As today is M.E Awareness Day one of the Sam and M.E committee members, Lynsey Murray, takes a look back at every lotion, potion and treatment she has tried over the last 4 years of living with M.E.
Over the last 4 years I have become a Guinea Pig for the Sam and M.E support group. Willing to try everything and anything (well apart from that, God no one wants to do that) in the hope that one day I will be cured and be able to live a healthy life again. Today I have decided to reflect on my experiences.
As advised by medical professionals:
1. GET- Graded Exercise Therapy.
Helpful? Pfft No not particularly. Most exercise exasperates condition. Could be helpful though if going back to basics like learning to use legs again for example. But not so helpful during a flare up.
2.CBT- Cognitive Behavioural Therapy.
Initially I thought, “I do not have a behavioural issue”, however as ever I was willing to give it a go. Mainly focused on pacing techniques and management of symptoms. Helpful? In some ways but only regarding how to deal with having M.E not how to control or alleviate symptoms. This is not a treatment or a cure for M.E and should not be billed as one. It helped me accept my condition that is all.
3. Pain Management-Standard Pain Medication.
Can be helpful-although some days not so much.
4. Citalopram- for anxiety/ mild depression.
As with many sufferers becoming unwell continuously affects mental state-understandably. Helpful on a day to day basis of coping with the illness. Doesn’t feel particularly helpful on a bad day.
As advised by myself, word of mouth and the internet:
Very understanding and helpful practitioner but expensive. Helped with stretching of muscles which in turn helped with spasms and pain. Was shown some techniques for back etc. Spent around £650 over a two year period! Worth it?
2. Nutritionalist- diet, gluten free suggested.
Tried faithfully for around 6-8 weeks. Possibly helped with energy. However not enough for me to carry on. Can be time consuming and expensive- if had seen a definite improvement I would have continued.
3. Acupuncture- Had 4 Sessions.
Did not feel any difference at all-that I can remember.
4. Aloe Vera Gel.
I have never in my life and I am 30, tasted anything so repulsive! Cannot even begin to explain this vile creation, and the aftertaste is even worse. Again because I am so determined to try anything I managed to take this about 8 times. Which is incredible considering how disgusting it actually is. If you have a strong stomach this is apparently good for inflammation.
5. Juice plus capsules.
Currently trying these, not for diet control purposes but for well being and possible improvement of immune system.
Tried several years ago and felt the practitioner was shite is that PC? Tried again a few months ago with a different practitioner and she is fantastic! I found this technique helps initially and lasts around 1-2 days. Normally tired afterwards however sleep well at night and feel a bit more energetic- a wee spring in my step. Would be good if have big plans the next day ie full day wedding, holiday, party. However not long lasting and expensive around £30 per session.
Low impact exercise when feel physically strong enough. Helpful on a good day. Not helpful on bad days. Light stretches soothe aching muscles and relaxation helps with sleep. And remember the Sam and ME Yoga Class takes place on the 3rd Wednesday of every month @7pm in the Pivot Centre in Moodiesburn (yes that was a plug).
Extremely helpful if joints and muscles are particularly painful. Deep massage lasts longer. Again though not long lasting and pricey.
To support immune system. Took for around 3 months, seen/felt no evidence of improvement.
10. Support Group.
Best treatment so far. With people who completely understands the brain fog, the concentration issues, the pain, the extreme never ending tiredness and so on. Why not come along to ours!
Next on my hitlist. Fingers crossed.
*Please keep in mind above are my experiences of certain “treatments” and under no circumstances should any of it be taken as Gospel.
Tags: Chronic Fatigue Syndrome, Lynsey Murray, M.E, M.E Awareness Day, ME, ME Awareness Day, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Someone once told me the best place to start a story was at the beginning – so here it goes.
In the beginning God made Heaven and Earth. He started sometime Monday morning, worked right through to Saturday night, had a few too many drinks to celebrate his newest creation and so had to take Sunday off to “rest”. Now this is a couple of thousand years before the start of the story I’m referring to, therefore, I’ll miss out the stuff about Adam, Eve, the Romans and how one shouldn’t covet thy neighbours house, wife, manservant, maidservant, ox or ass and jump straight ahead to Spring 2008.
If this was movie, the title sequence would start with the camera sweeping across a clear blue sky on a warm summers day, it would then pan down and the audience would be transported back to 2008. I would be driving Marty, my 11 year old Ford Fiesta (that due to a faulty exhaust, emitted a bang that sounded like a gun shot every time I drove over a bump) whilst listening to some Bruce Springsteen at top volume and singing along at a pitch only dogs could hear, “Cause baby we were born to run”. Unfortunately, this isn’t some big budget Hollywood production with a highly paid actress being cast in her greatest role to date as the wonderful Samantha McInnes.
I was 20 years of age and the girl who was most comfortable in skinny jeans, a band t-shirt and red converse topped off with the signature biker jacket and scarf. Due to my hair always being a mess and the fact I liked to dress to like 1970s homeless punk, I regularly looked like I was auditioning for a role in a an all female Ramones tribute band. I imagine they’d be called The Romanellas. Due to my 5 ft 10 stature I feel the only band member I could portray realistically would be Joey Ramone, plus I could so pull off a pair of those glasses. Every one of my days had a soundtrack, I lived on music from the past; Bob Dylan, The Band, Joni Mitchell, Springsteen, Patti Smith. Most days I could be found dancing around to these legendary artists. I say dance but I don’t know if you can really class my moves as dancing. It looked more like I was having an upright epileptic fit. Now and then, I would even retrieve a mop from the kitchen and pretend to be performing on stage to a stadium full of my hardcore fans, who just couldn’t get enough of my epic miming abilities and spasm dancing.
I had just finished university with a degree in Politics, or as I prefer to call it, a colossal waste of three years studying a subject that commented on what changes should be made to make the world a better place, rather than actually doing something about it. The first signs of the recession where showing, Heath Ledger had been found dead in his New York apartment and Katy Perry was taking over the world and promoting Lesbianism with her hit song “I Kissed a Girl” and apparently she did like it. To celebrate never having to pretend to be interested in Social Contract theories ever again, my good friend Jennifer and I decided to spend our summer inter-railing around as many European cities that would could fit in with very little money, surviving on nothing but water, bread and on very special occasions, packets of tortilla chips that we would dip into some very questionable chocolate spread.
As Jennifer is likely to be mentioned as much as myself throughout this tale of the unexpected, I should probably tell you a bit about her. Jennifer and I met at 16 when we were both slaving away in the same clothes shop. We are like two sides of the same coin, similar in many respects but vastly different in others. For instance both of us enjoyed partying, going to see many a shit band that thought they were going to be the next big thing, and getting free drinks. However both of us had very different methods to get said drinks. Jen being blessed by Mother Nature in the breast department used them as a tool for a cheap night out. Big Mamma however was not as kind to me, instead I got height which meant two things; one, small men would get intimidated by me and feel the need to belittle every word out my mouth to prove their own masculinity and two, tall men bought me drinks due to my very long legs. With Jennifer you get something that is a rarity, complete and utter honesty, many have called it a harshness, I prefer to believe these people just can’t handle the truth as I tend to agree with 90% of the things that come out her mouth. She hates the pretentious intellectual types who start off every introduction with “Hi, I’m Eugene and I have a joint PHD in the mating habits of bed bugs and the effects of furniture polish on the IQ of household cats, What do you study?” as they judge her as being an idiot because she never felt the need to continue studying after she was no longer forced to. The irony is that Jennifer may be one of the most intelligent people I know; she just doesn’t feel the need to force it down everyone’s throat. And despite being a big boobed, harsh, hater of the highly educated, she is one of my best friends.
After travelling around Europe and returning to Glasgow, like many graduates who finished university, I realised that throughout my time in the education system I along with many of my peers was lied to by authority figures who repeatedly told us that going through further education, working hard and getting a degree would practically guarantee us all a job (lied to or my teachers never realised the economic downturn that was around the corner). Instead I went full time job working in the clothes shop. Not only did this teach me that if you wear green and red together you will look like either an elf or a Christmas tree, I earned enough money to keep partying it up like I was still a student (I would like to take the time to point out, without the use of illegal drugs). Now this may seem like my life at this time was just all work and drinking, I am not going to lie that did take up the majority of my days, along with my hallway dancing, but I was also very outdoorsy and active. I ran for an hour every second day, regularly went hiking, camping and was ready to take on the world and all its challenges. The only health complaint I had was every now and then I would suffer from migraines and sickness which one Christmas did lead to me being sick over my friend’s room mate whilst ice skating. However, he wasn’t that pissed off with having to clean puke off his trousers and the sickness and migraines never usually lasted very long or happened frequently enough to cause me any concern.
One day in May, after working all week I decided to do my usual, head out with my friends, dance until my feet bled and shot tequila like a gay cowboy trying to forgot his pending nuptials to the boss’s daughter. It’s true what the song says; it really does make you happy (I would like to take this time to point out that under no circumstances do I recommend binge drinking, unless it’s a Saturday, then is practically the law). Now, I do not remember this weekend for the wild partying and the copious amounts of alcohol consumed, what I do remember was the morning after the night before. Instead of waking up with the usual dry fuzzy mouth, sore feet and memory lapses you get after a night of tequila, I awoke to find my mouth full of blisters. Needless to say not the kind of look I was going for. My first thoughts were not “OMG there is clearly something wrong as I have awoke to find that I have leprosy of the mouth”. It was actually “Oh shit I have now drank so much tequila that my brain thinks my mouth is a foreign entity and is trying to reject it”! I immediately got up, dressed and headed to pharmacy where I purchased any product that had the words “throat” and “mouth” on it, I didn’t care what the hell they were for, I just thought that if I sprayed enough of them in my mouth it would return to its previous non-diseased state. Over the course of the next few weeks no matter what I used nothing would shift what I had now became convinced was the result of an airborne toxin that had accidently been released from a secret underground lab. Concerned that the mouth leprosy may be getting worse, I decided it was time to see the doctor.
When I entered the GPs surgery I was surprised to see a young student doctor I had never met before behind the desk. Being a girl in the prime of her life I did what any normal girl would do when faced by a young, hot soon to be doc, I tried to act cool and sophisticated – well as cool and sophisticated as one can be when they have a mouth full of boils. I never took in much of what this perfectly formed specimen in front of me was saying, as I was too busy trying to psychically convey how ethics and boundaries did not need to come into play in our doctor/patient relationship and it would be totally appropriate for him to ask me out on a date. The brief parts I did manage to catch were; it was probably nothing, I was just run down from all that hardcore working and partying I was doing, but just to be on the safe side he was going to send me for some blood tests. As I then got up to leave, trying still to impress the hot doctor by smiling and giving him the eye, I tripped and fell head first out the door.
After my fall my health started to deteriorate, at first I thought it was just a by-product of the embarrassment I felt, but common sense kicked in when I was unable to get halfway through my shift without my body giving up and refusing to do anything. I was suffering from really sore heads, but not the usual spewing whilst ice-skating migraines that I was used to. I had that crappy feeling you get right before you get a severe case of flu or the shits and was just generally exhausted. A week after my initial consultation with the hot doctor I received a phone call from the surgery asking me to make an appointment straight away with the head Doctor, Dr Gregory. The disappointment of not being able to redeem myself from my trip out the door with the hot student doctor was displaced by the worry I felt about what was actually wrong with me.
When I returned Dr Gregory told me that overall my blood was a bit shit The general “ingredients” that make up your blood such as your Iron, Vitamin B12, ferritin etc were all alarmingly low. So to find out why that was, more tests were needed. I was tested for anything and everything that you can possibly be tested for: Coeliac Disease, Pernicious Anaemia, Diabetes, Crones Disease, Aids (now I don’t know if they actually did check for that last one but with the amount of tests they ran I wouldn’t be surprised). Throughout this time I started feeling worse, the exhaustion took over me completely, I awoke in the middle of the night with severe muscle cramps in my legs and no longer felt like I was about to get the flu, I now felt worse than I had with any flu or virus I’d ever experienced. After all the test results came back negative, I was referred to the hospital to meet with a lovely Gastroenterologist who was ever so kind as to stick a camera up my ass and down my throat (and no it was not the same camera), but yet again the same results – nothing wrong. After a few months of taking iron supplements and vitamin B12 injections I started to feel better and my blood count normalised. So thinking that this was all just some freak abnormality and that everything would be fine, I stopped going to see my doctor and went back to my normal daily routine. What I didn’t know was that this “freak abnormality” was actually one bastard of a virus and this would be the start of my relationship with M.E. I use the word relationship here as to me having this illness is like having a really crappy boyfriend. One of those guys who keep fucking you over time and time again, but for some reason you just can’t seem to dump him.
Being a bit of a geek I refer to my pre M.E self as Anakin Skywalker, young and full of potential, and the post M.E me as Darth Vader, basically fucked. Over the course of the next year and a half, things started to change. I would go through phases of feeling just like my old Anakin Skywalker self again, ready to take on the evils of the universe. Whilst other times I would feel terrible, I had no energy left at all and would feel as if the dark side had literally consumed me, “Luke I am your father”. During these times I would go and see the Doctor again and get my blood checked, thinking that it had to be something to do with that, but each time they came back with the same result; all within perfect ranges. I grew to think I was just getting older because it’s perfectly normal to feel like that at 20!
After a while I started running again, but a few months into it I had to stop as instead of doing my usual and spending an hour running several miles I struggled to leave the borders of my small town housing estate. I stopped going out as much. I was no longer the Tequila loving Sam. Instead I was one Tequila, two Tequila, now someone has to pick Sam up off the floor and put her to bed as she has just passed out AGAIN! As time went on exhaustion took over, my friends would phone and make fun of the fact that I was in bed at half 6 having came home from an 8 hour shift at work, but it all happened so gradually that it took me a long time to notice the vast change in my energy levels or the fact that I never really felt well. Looking back, I think that maybe I didn’t want to have to admit to myself that something was wrong. After a while, feeling ill just felt normal.
Then came 2010…
*Please note that all names have been changed to a character or celebrity pseudonyms to protect identities.
* Title taken from “The Catcher in the Rye” by J.D Salinger.
*All material on the Sam and M.E site and Blog is copyrighted. Unauthorised use of any material will be not tolerated.
Tags: Chronic Fatigue Syndrome, Jennifer Garner, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
To some, this particular Blog may seem as if I have totally lost my mind. To those of you who do think that, I would just like to reassure you that I lost my mind many years before I succumbed to the “Dark Side”.
We all know that “Do you believe in life after love” are lyrics from the 1998, Grammy award winning, auto tuned to the max, number 1 in 23 different countries, hit song “Believe”. Yes ladies, gentlemen and those in between, this blog is about thee one and only Cherilyn Sarkisian. More commonly known as Cher. Now if I didn’t think I would get sued from the women herself, as you read this blog I would have “If I Could Turn Back Time” playing automatically in the background.” So as I am unable to do that, I would ask you all to open your ITunes, click on a bit of “If I Could Turn Back Time” and get in the Cher mood.
Everyone knows of Cher as a singer; with her hit singles such as ‘I Got You Babe’, ‘If I Could Turn Back Time’ and ‘Believe’, an actor; whether it’s playing a single mother in ‘Mermaids’ or her Oscar winning performance in ‘Moonstruck’ as an unlucky in love Jewish New Yorker, or simply a women who has a very eclectic taste in clothing. Whether you love her or hate her, for the past 5 decades Cher has worked her ass off to become one if the most successful women ever in the entertainment industry. However what many people don’t know about Cher is she has also had her very own turbulent relationship with M.E.
In the late 80’s Cher was diagnosed as having the Epstein – Barr virus. EBV is a virus which like the common cold sore is of the Herpes family and is estimated to affect 90% to 95% of American adults. In most cases symptoms go unnoticed and cause no on going problems as most individuals gain adaptive immunity towards the virus. However in a small number of cases the effects of EBV can be more severe causing fatigue, swollen nymph nodes, rashes, flu like symptoms and glandular fever. This in turn can then lead to Chronic Fatigue Syndrome. This my friends, is exactly what happened to Cher. Cher became so ill due to M.E that in 1992 she was forced to 3 years off from her career to rest, recuperate and get back to her kick ass self. When asked by the BBC about this period Cher said “Boy, it was devastating for me…I wasn’t able to work for almost three years…my experience was it was really a physical illness but it does make you depressed as well”. Thoughts many others in the M.E community have echoed time after time.
“Now what the hell has this got to do with the price of milk?” I hear you say. Well my point is this: Cher is now a 64 year old woman who has just became the first ever person to have a number 1 in 5 different decades, she makes movies where she sings and dances like a woman half her age, she trains like a marine who is just about to go on a covert operation to the opium fields of Afghanistan, she still goes out wearing her practically non existing outfits and for the past 3 years she has done over 200 shows at Caesar’s Palace in Las Vegas. All this from a woman who had to take a three year break as she was suffering from Chronic Fatigue Syndrome. Now what I have taken from this (and what I think that all other M.E suffers should too) is that if Cher can kick this illness where it hurts and go on to accomplish all that, then I am pretty confident that with a bit of strength, determination and time I can follow in her foot steps and also overcome it. Who knows? Perhaps after that I may also get my own show at Caesar’s palace, with over 22 costume changes and a pyrotechnic display that would make Guy Fawkes proud.
Nah. I think that’s going a bit too far. I’d better just concentrate on my own covert operation of combating my body’s very own terrorist – M.E.
* Title taken from “Believe” by Cher.
*All material on the Sam and M.E site and Blog is copyrighted. Unauthorised use of any material will be not tolerated.
Tags: Cher, Chronic Fatigue Syndrome, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Being Scottish the festive period is not about Santa, presents or the Baby Jesus. It’s about the one night a year where us Scots can do what we are best at, drink! That night my friends is the 31st of December more commonly know as New Years Eve or if you’re in my neck of the woods, Hogmanay. My theory for Hogmanay has always been: How you bring in the New Year foretells how you spend the rest of that year. For example if you spend the bells sitting in the corner, crying over your ex boyfriend and his new girlfriend that looks like Megan Fox, then you will spend the rest of your year doing exactly the same thing. Now if this theory of mine were correct I would have spent 2010 dancing about in the snow to bagpipes with my good friend Courtney; who has a love of alcohol, cigarettes and fun times. And a crazy Australian named Elle, that Courtney befriended in our local sandwich shop. This may seem slightly random but to those who know Courtney the bringing along of randoms to various events is a common occurrence. I once turned up to meet her at a gig only to get there to find her with a middle aged depressed divorce who she met on the bus and felt that the perfect thing to do was to invite her along to join us in the mosh pit.
Needless to say, this is not how I spent my year.
At the end of 2010 I was starting to feel, well let’s put this technically – shit. What I failed to mention is that during this time I was also an addict. A Lucozade addict. We all know that one of the main symptoms of M.E is severe exhaustion. So to combat this I used to drink 6 250ml bottles of that sunshine yellow stuff every day (another few years of that and I think I may actually have turned sunshine-yellow). I loved it. I loved the first fizz of the bottle when you opened it, I loved the smell of it first thing in the morning, but most of all, I loved the taste. The taste, which is unlike anything else in existence. To me the makers of Lucozade, GlaxoSmithKline, are sheer geniuses who deserve some kind of Nobel Prize for creating this marvellous and unique drink (And no, I haven’t been paid by them to say that). The worrying thing is though, even after drinking 6 bottles of “The Zade” and was still exhausted, I never thought anything was wrong.
At the start of 2010 the feeling of shittyness continued to get worse no matter how much Lucozade I drank. Still I ignored it. That was until May, when the shit literally hit the fan. Well not literally but you know what I mean. Things got so bad that walking down the street made me feel as if I was going to pass out. I would avoid walking up stairs, as by the time I got to the top of them I had no energy left to do anything the rest of the day. During this time the soundtrack of my life became “Running on Empty”. I could regularly be seen pottering about the shop singing it under my breath like a mental patient who’d just lost his wife and believed that singing their wedding song every minuet of everyday would bring her back. My head was so sore that I couldn’t concentrate on anything for longer than a couple of seconds, my speech was slurred and I sounded like I had been drinking 4 bottles of vodka a day for the past 6 months (I hadn’t). At points I sounded like I had a speech impediment, I just couldn’t seem to be able to get the right words out. I remember serving a customer who wanted directions to the coat department, I just stood for approximately 5 minuets trying to speak but nothing came out. The women looked at me with those sympathetic eyes as if to say, “oh how cute these big shop folk have hired a poor girl with a bad stutter to make up their disability quota”. I just wanted to shout in her face “I CAN SPEAK!!! I AM JUST SO TIRED MY BRAIN WONT LET ME”. As I couldn’t, in the end I just gave up and pointed in the general direction of the outerwear department. My whole body ached as if I had been severely beaten in some kind of gang initiation the night before and for an entire month I had constant pins and needles up and down my arms and legs but the final straw that made me realise this was not right for a normal 22 year old, was when my face went numb for 2 weeks. I finally booked myself an appointment with a doctor.
My own doctor had no appointments left, so I booked in with another one of the Doctors in the surgery so I could be seen sooner and in hope that the hot student doctor I seen two years previous was now qualified and back in the surgery and I could redeem myself. Unfortunately not, my appointment was with a man I have now Christened Dr WTF. My first appointment with him actually went well. Dr WTF said that I was totally right; this was no way for a normal 22-year-old girl to be feeling. He said he would run some tests and told me to come back and see him in a week. But over the next week I started to feel even worse. I couldn’t get out of bed, my muscle aches increased tenfold, even moving position in my bed left me in agony. My sore head had became unbearable and I was so tired I felt like I hadn’t slept for 40 days and nights. I was actually looking forward to going back to the doctors to finally get some help.
Oh, if only I knew then what I know now perhaps I wouldn’t have gotten my hopes up. When I returned he said that all the tests came back negative (which I already expected since I they have all been done like 40 times in the past year to no avail) but I thought well maybe now he can do something else or refer me to specialist, someone who could give me some answers as to why I am feeling like this. Obviously I was being too optimistic. Here is how our conversation went:
Dr WTF: Tell me Miss McInnes do you get sad?
Me: (caught off guard) Well, everyone gets sad at some point don’t they? But I wouldn’t say that I am the kind of person who gets sad unless there is a reason behind it. I mean I am not breaking down and crying on the kitchen floor over there being no Pasta for my dinner.
Dr WTF: Hmm. Do you tend to be moody or have mood swings?
Me: (slightly confused) Eh, not really. I get grumpy sometimes when I’m tired but that’s nothing new. In fact I think it’s possibly a family trait because if my mum is on nightshift and you flush the toilet and wake her up, you may as well emigrate.
Dr WTF: Tell me do you feel exploited by your work place?
Me: (laughing) No, I’m not a child labourer. DO YOU?
Dr WTF: Miss McInnes what I think is wrong with you is that you’re depressed and stressed. What I think you need is to be signed off work for a couple of weeks and take these weeks to do things you don’t normally get the chance to do such as see friends, go to a movie. Perhaps even go for a run.
Me: (pause) A run? A run? You want me to go for a RUN? I am struggling to walk from my bedroom to the fucking toilet and you want me to go a run? My theme tune to life is “Running on Empty” and you what me to stick on my running shoes and go for a LEISURLEY JOG? What kind of medical school did you go to? Or did you just buy your medical license on eBay along with a signed copy of Cliff Richard’s Millennium FUCKING Prayer?
(As an avid Cliff Richard despiser it made sense to me as this doctor was being a massive prick, he had to love the Cliff.)
But as a good woman with manners raised me, I never actually said that last part. I wanted to but I didn’t. Instead, I said:
Me: I really don’t think you understand. I am not depressed, in fact apart from feeling like crap most of the time I am a really happy, positive person. I am also not stressed. I really have nothing to be stressed about. And if I was depressed how the hell does that explain why I haven’t been able to feel my arms, legs and face for the past month?
Despite my protestations, there was no convincing this man otherwise. He had decided that was what was wrong with me and he was writing it on my sick note. I grabbed that bit of paper and I got out of there as soon as was physically possible for someone whose energy levels were practically non-existent and when every movement caused great pain. So it took me about 20 minuets.
When I got home I burst into tears. I was furious and upset that this so called doctor was basically saying there was nothing wrong with me and it was all in my head. Not that there is anything wrong with having a mental illness like depression but I knew people who were actually depressed and compared to them I was bloody Reece Witherspoon (now, I don’t know if Reece Witherspoon is actually a genuinely happy person but to me she always seems to be, so for this purpose she is thee happiest person in the world). I knew for certain what Dr WTF was saying wasn’t the case and was annoyed that he was unwilling to do anything to make me feel normal again.
Ironically, the trip to the doctors actually had a negative effect on my health. It threw me further into Darth Vader mode by doing nothing at all to help me. It wasn’t just me that this was hard on, it was hard my mum as well. She had watched her lively fun-loving daughter, who never used to home as she was always out doing something turn into a drained and weak shadow of her former self. Yet according to an “expert” there was no explanation for it, it was all in her head. There are many things that my mum is: crazy, a chocoholic and blunt are to name just a few, but she also doesn’t like being wrong. And a few weeks previous she to this she had mentioned something called M.E and was pretty confident that I had it. She said, “Samantha, take the time off Dr WTF has given you, and if after that time you are still not feeling right we will go back and see Doctor Gregory again. I’ll come with you, we’ll explain everything that’s happened and make sure he knows this isn’t right and it’s not some kind of depression”.
For the next couple of weeks I spent most of my time resting in my bed and attempting to watching seasons 1 to 7 of The West Wing, which I have now done on more than one occasion. This is firstly, because when I tried to watch them the first time I was slightly zombiefied so don’t remember much of it and secondly, because it’s AWESOME!! During this time my mum also changed my diet, including cutting out my beloved Lucozade. I am not going to lie – it has been hard. I miss it everyday but I know I could never go back that way of life, unless I was willing to live life being sunshine-yellow or you know, diabetic.
A few weeks passed and although I was feeling slightly better due to resting all this time I still wasn’t 100%. In fact, I probably wasn’t even 50%. Demi and I (That’s what we will be calling my mother from now on) headed on up to the doctors again, not to see Dr WTF but to see doctor Dr Gregory. We explained everything and he agreed that it didn’t seem like some kind of depression. He concluded that it most probably related back to a few years ago when my blood’s “ingredients” were all a bit rubbish and Demi was right, it probably was ME. However he referred me to another doctor at the hospital, just to make sure.
The hospital appointment couldn’t come quick enough. The doctor there told me that the blood episode a few years back was most probably a virus and this Chronic Fatigue Syndrome or M.E was the aftermath of it. He didn’t know how long it would last, some people get over it in 2 -3 years, and others it takes 15 and some never recover. He also stated they didn’t know what caused it and so in turn didn’t know how to treat it, what works for one person may not work for another. What is important he said is a healthy diet (Demi had already sorted that one) and that the only thing that there was evidence of helping M.E suffers was something called Graded Exercise (although he never properly explained what graded exercise actually was).
I left the hospital that day and I was ecstatic, which seems like a very odd response for someone one who has just been told that they have a chronic illness, which could make them feel like shit by doing the smallest thing, and there was nothing that could really be done about it. But none of that crossed my mind. I was happy because there was now a name for what I had and no one could ever again say it was all in my head.
There are however still some small-minded people out there who still think M.E is a mental illness. To those people I say in 1992 The World Health Organisation changed the classification of M.E to a disease of the nervous system. So if you still think it’s all in my head then you are either a complete idiot or still stuck in the 80’s when people thought you could get aids by being in the same room as someone who has it. Choose which one you want to be?
Mostly I was happy because even though I knew it all along, Dr WTF was wrong.
*Please note that all names have been changed to a character or celebrity pseudonyms to protect identities.
* Title taken from the Belle and Sebastian song “My Wondering Days are over” .
*All material on the Sam and M.E site and Blog is copyrighted. Unauthorised use of any material will be not tolerated
Tags: Chronic Fatigue Syndrome, Lucozade, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Recently, through the power of social media, I made a new friend. Her pseudonym shall be Shakira for no other reason than that’s what I want to call her and I have a funny feeling her hips don’t lie. Shakira was telling me how she works with people aged 11 – 18 who have long term conditions including M.E. She said she could recommend my blog to the older ones but couldn’t to the younger ones due to my use of foul language. At this point I totally felt like Eminem, coming with a parental advisory warning. Lock up your kids, Sam’s Blog is about! I even considered starting to dress like a rapper to keep up my bad ass rep. In the end, I decided against it as although we are in a recession, the price of Gold is still increasing and I don’t think I could afford one of those medallions they all wear. After I got over my very brief fling with the American Hip Hop scene, I decided instead of sending them a censored version of my Blogs. I would write them their very own PG rated Blog about living with a long term illness and send it to them through Shakira. Here it goes:
Being a teenager is hard. You have all these hormones running through your veins making you crazy and kids tend to be horrible at that age for no apparent reason. Along with that, you need to worry about exams, how you’re going to cover up that massive spot on your chin, getting into Uni and how you’re going to sneak back into the house at the weekend without the rents smelling Mad Dog 20/20 off you. At school I was weird. I used to walk around with one multi coloured fingerless glove on, ‘The Band’ written on my wrist, my other hand covered in red ink so it looked like blood and every word out my mouth was laced with sarcasm. Surprisingly, I actually had friends. I should really have had my head flushed down the toilet on a daily basis but I think people may have found the craziness an endearing quality. But I can only imagine how hard it is to be a teenager and having to cope with a long-term illness.
I probably should have started this blog with what I call “all that David Copperfield kinda crap”. My name is Samantha McInnes, but please call me Sam. I am 23 years of age, which to most of you will seem ancient as I remember being 14 and thinking people at 23 should be collecting their pension or at least married (I am neither). I am a massive Superman fan, I love music (seriously guys go out and buy your self a ‘The Band’ album – it will change your life for the better), I am a mind of useless information, I love travelling and I also suffer form M.E.
My M.E started after I got a virus in 2008 and since then I have been battling what I call my body’s very own terrorist. However I wasn’t officially diagnosed with M.E until summer 2010. Sorry, off point for a second. I am listening to my iPod while writing this and Abba’s ‘Chiquitita’ has just come on! God, I’m so cool. Now it’s changed to the Foo Fighters that must win back some credibility surely. No? Anyway, back on point. I read somewhere that being diagnosed with a long term illness is much like the grieving process you go through when you lose a loved one.
The first part of the grieving process I went through was denial. Not denying that I had M.E, I knew that for sure. What I denied was the fact that this was a long term illness that I would have to learn to live with. I foolishly thought that I was going to be the only person in history to be diagnosed with M.E and be cured by the diagnosis alone “Yes, Miss McInnes, you have M.E but now that I have told you that, you’re cured!” So after I was diagnosed, instead of taking it slowly, I decided to put my body into gear and go full speed ahead. Needless to say, I didn’t last long. I crashed and burned faster that you can say Chronic Fatigue Syndrome. And this foolishness threw me head first into the next stage – Anger.
Of course I was angry. Why shouldn’t I be? I had M.E. It made me feel like crap most of the time and it had ruined so many of my plans. I mean, I’m 23. I wanted to move out, travel the world, meet new people, climbMount Kilimanjaroand do something with my life and instead I am stuck in Moodiesburn, unable to do anything because I am not too ill. This had to be one of the worst phases through out my entire relationship with M.E. By no means were my symptoms at their worst at this point, but being angry doesn’t help you at all, it just throws you further into the dark side and uses up energy that – let’s face it – no one with any long term illness has to spare. But unfortunately many people get stuck this stage unable to see beyond having M.E. I was one of the lucky ones. I got out.
Finally – acceptance. It took me about 6 months from being told I had M.E and 2 and a half years form when I first fell ill to get here, and it wasn’t easy. I almost felt as if I was failing myself for not fighting back against it. As if I was just lying down and being like “OK M.E, just walk all over me, that’s fine but if you don’t mind could you please take your heels off first?” I don’t know why M.E is wearing heels, I have never seen a terrorist before going about in a pair of 6in Jimmy Choos! Anyway, that’s not the point. The point is, with an illness like this you can’t just power on and push your way through it, all that’s going to do is set you back. It’s about finding a balance and realising that you have to work your life around it not the other way about.
When I was at Uni there used to be set of stairs that took you from the main entrance up to the where all the exams where held. Written on the wall in chalk here was “hope lies in the darkest of places”. Yeah, you’re not going to be able to run any marathons anytime soon and your going to have times were you feel like crap and can’t get out your bed or even walk, but if while you’re having these bad times you have hope that one day, even if its several years down the line you will get better and you’ll climb Mount Kilimanjaro and you will be able to go a road trip down route 66 and that because of all you have been through you’ll appreciate it all that bit more. It will make those hard times a bit more bearable.
I was going to write here that I am sorry to hear that you have a long term illness but I actually hate when people say to me, “Oh sorry you have M.E”. I am like, ‘What are you sorry for? Did you give it to me? ‘Cos if you did I am going to have to kill you in the most painful way possible.” But most of all, I don’t want their pity. Yeah, so I have M.E and yeah, it makes me feel terrible. My legs don’t work, my speech get slurred and some days I can’t get out my bed. But do you know what? M.E doesn’t make me who I am and one day I am gonna kick M.E’s ass!
*Please note that all names have been changed to a character or celebrity pseudonyms to protect identities.
* Title taken from a wall in the University of Glasgow.
*All material on the Sam and M.E site and Blog is copyrighted. Unauthorised use of any material will be not tolerated
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Every year on the 27th October (the day after my birthday) I perform a solemn ritual – listening to The Cure’s song ‘Inbetween Days’ purely for the lyrics, “Yesterday I got so old I felt like I could die, yesterday I got so old it made me want to cry.”
When you’re a kid, birthdays are great. You get presents, cake and everyone has to be nice to you. When you get older this happens too. However, every birthday after the age of 21 serves as a dismal reminder that you are another year closer to retirement (and subsequent death) and that you haven’t even came close to achieving the goals you set out for yourself. For instance:
Age 21 – Win first Oscar (Best Supporting Actress)
Age 22 – Achieve Prime Ministerial status
Age 23 – Become the greatest singer/songwriter theUKhas ever seen, with the exception of Lennon, McCartney and Mel C aka Sporty Spice. Incidentally, Mel C is actually the 2nd the most successful song writer in British history – Lennon and McCartney being the first, based on record sales world wide.
I didn’t think that was too much to ask for.
But when I turned 23, instead of being upset over my failed acting, political and song writing careers, I was in my bed ill due to M.E. To get to that however, we need to head back to the “Stupid Bitch” phase.
After my epileptic dancing at Blink 182 and only feeling ill for a week (ONLY!) I decided, “Fuck it, I can do what I want, M.E isn’t going to stop me”. So I did. Over the month of September I did everything any normal 22 year old would do: I went to work, I went to the pub, I hung out with friends, I even went on a day trip to Rosslyn Chapel (Yes that is the one from the Da Vinci Code and yes I do realise this is not a normal thing for a 22 year old to do) and ignored all the warning signs M.E gave me.
At the beginning of October, when some of my friends decided to go camping, I thought to myself, “Yeah, I can do that!” (Chant with me now folks “stupid bitch, stupid bitch”). In October 2010, Sandra Bullock, Cook, Emile Hirsch, Mr Bean, and myself all headed off to our very own LostIsland. Unlike most people, my friends and I don’t go camping in the local field or in each others gardens, instead we get a Viking with long flowing locks of blonde hair to pick us up on his barge and take us to his island in the middle of Loch Lomond for a few days (I imagine Americans would love this shit). When I described the island before as the Lost Island, I wasn’t joking. I mean, there are no polar bears, black smoke and nor is there a computer in a hatch which demands the input of certain digits every 108 minutes and the only ‘Others’ are The Viking and his family whose house is on the opposite end of the island. But it’s still rather creepy and there are strange goings on. You can also see an Island of Wallabies from it. I mean, we’re in Scotland, why the hell are there Wallabies jumping about?
After wasting several hours in Tesco buying food (I want to point out that even though we were going camping I was still eating really well – no tins of beans for me – at least I was listening to M.E in that respect), a boat ride out to the Island and putting up the tents, it was time to sort out some wood for a fire and for Cooks outside oven, so he could realise his dream of becoming the next Jamie Oliver. Cook also being the ‘Jack’ of the group (I am more of a Sawyer girl myself) came prepared with a chainsaw. I had never used a chainsaw before, but I had seen lumberjacks on television with their checked shirts and it looked pretty straight forward, so I stepped up. Bloody hell, it was hard! Not only did you have to use all you strength to lift the thing, but it was also vibrating like I was attached to an electric chair. After 20 minutes I had not sawed further that 5 cm. Needless to say, I quicky decided Lumberjacking wasn’t really my thing and returned to camp where I sat and did nothing for the next couple of days.
Just like any other group of 20 somethings, when we go camping there tends to be a lot of drinking involved and usually I am the first one in there with a bottle of tequila. Although I was still going full speed ahead at this point, there were certain things I scaled back on. Drinking was one of them. I mean, I drank that weekend but when all the drinking games started I sat back, relaxed and watched Sandra Bullock get drunk enough for both of us. While the rest sat drinking, Cook decided it was time to build his outside oven in which he was going to cook a whole chicken. Now, from the first day he suggested this, I thought this is destined to fail. Either that or we were all going to get the shits on an Island we had no way of getting off of. This would inevitable force us to hijack someone’s tent and turn it into a ‘toilet tent’ where everyone could go and relieve themselves and then be sick as they were standing in everyone else’s crap. Much like you see skanks do at festivals. But after watching Lost for 6 years religiously, I should have known better to doubt our very own Jack. I don’t normally post pictures here but I am still so impressed by Cooks efforts I want to share with you all his outside oven made with wood and moss he found in the forest, and a bit of duct tape! We all ate it and I am pleased to say we are all still alive. Inspired by Cook’s impressive outdoor cooking, Mr Bean and Emile Hirsch tried to replicate it using the camp fire. Emile decided his dish of choice would be pork joint. To cook it he wrapped it up in tin foil and placed it under a rock in the fire. It actually worked out OK. Mr Bean however, decided to try something more commonly purchased by Glaswegian students after a night of hard partying. Chips and Cheese. 2 days 4hrs and 16 mins after the chips were places on the camp fire they were finally ready. After the day’s Master Chef Competition, we were all ready to sit back, relax and enjoy our last evening.
The next morning when the Viking came to pick us up on his long boat and took us back to the main land.
Once off the Island , it was time to head back to my day job (which surprisingly is not Blog writing). It was the week before my birthday and the day after it I was meant to be heading off to Alton Towers to be abused by some more mean rides (in an actual Theme park this time) and to celebrate my good friend Kevin Costner’s 30th birthday. Unfortunately for me, M.E had another idea. It was time for the Landslide to bring me down. After already spending four days at work, I got up to go in for the fifth day and realised I was more tired than usual (1st sign). By the time I got to work, I was starting to get a dull headache (2nd sign). By mid day, I was reminiscent of a zombie from Michael Jackson’s “Thiller” video. I couldn’t do the dance though (3rd sign). By 4pm, I was Darth Vader (myself, having missed all signs went straight passed GO, not having collected £200). I went home and retreated to a place that had become all too familiar; my bed. I tried to convince myself that this was would just be a weekend thing and by the time it came to Monday I would be fine, when deep down I knew that wouldn’t be true.
Monday came and went and Darth stayed with me. Wednesday was my birthday and Darth decided he wanted to help me celebrate. His present to me being: muscle aches, headaches, fatigue and a general feeling of shittyness. I spent all day resting in preparation for the evening as I was having a birthday dinner with Demi Moore, Posh Spice and Jack Branning (My older sister and future brother in law), Rumour Willis and her boyfriend (This is my younger sister, you may think I called this purely because her mother is Demi but she does actually look like her) and Courtney Love. After dinner, Faith Evans and Hilary Duff also joined us. Sitting having dinner and chatting doesn’t seem like it would take a lot of effort, but to someone with M.E who is in the middle of a relapse it feels like your running a marathon and your using up that little energy that you body has stored. I knew I was lucky to have all these wonderful people around me to help me celebrate my birthday (even if I did look like a corpse) and couldn’t really make conversation, but part of me couldn’t help but blame myself for me feeling like this. No, I didn’t give myself M.E, but I did carry on for weeks before like nothing was wrong, not thinking of what was most surely going to happen. I had forgotten the most important rule that Jonathon Kent taught Clark- actions have consequences.
When you have M.E that lesson becomes more apparent than ever.
*Please note all the names of people in my blog have been changed to their celebrity or fictional character counter part to protect their identity. Under no circumstances should this be a reflection of the named celebrity or fictional character.
Title taken from the song “Landslide” by Fleetwood Mac
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Tags: Chronic Fatigue Syndrome, Lost, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Since I have been diagnosed with M.E (and subsequently spent a shit load of time unable to walk and in bed) many people have said to me, “Do you not just think, why? Why out of every one has the big man upstairs chosen you to have this?” To this, I always reply with the same thing – “No.” And here is why:
At the end of November, my two oldest friends – Hilary Duff and Faith Evans – joined me on a trip to Scotland’s 2nd largest and 2nd best city (no offense to any Edinburghers out there, but to me Glasgow will always be the greatest city in our small country) to soak up some of the Christmas atmosphere that Edinburgh sweats out at that time of year. After waiting for what seemed like a decade in the snow, we finally managed to get on a train packed out like pre-pubescent teenagers at a Justin Bieber concert and eventually, we got to the ‘Inspiring Capital’. Now, as we had a bit of a journey to get there, we quickly decided that the first stop of the day would be to refill our energy stores and have some lunch.
This lunch was no different to any other lunch the three of us usually have. It started off with Miss Duff asking a rather exasperated waitress twenty different questions about what she would recommend and eventually deciding that she wanted the chicken, but with the side from the lamb, the dressing from the beef, the salad not the fries and, if it was possible, could the waitress serve it while she did the Macarena? No matter how many times Faith and I have sat through this pre-lunch ritual of Hilary Duff’s, every time is even more amusing than the last. After finally choosing what we were going to eat, we then moved on to our usual topics of conversation: work, when Adam Levine was going to ask Faith Evans to marry him (it happened in April 2011), contraceptives and jobbies. Now for those of you who aren’t Scottish and don’t know what a jobbie is, a jobbie is another word for a shit. Don’t ask me why, as I have no idea, but ever since we were about fifteen every time the three of us are in a room together the topic of conversation always some how gets on to our bowel movements. Many people may find this a rather strange topic of conversation for three 23 year old females to talk about, but for me it would be stranger to have lunch and for this topic not to come up. For the record Faith’s and mine were normal. Hillary however was having a bit of trouble with hers.
After the usual topics of conversation were over, we moved on to my health – or to be more precise – the lack of it. We talked about how M.E had changed the way I lived my life now, how hard it had become for me to do simple everyday things and about how this was impacting on my dwindling social life. Then Hilary Duff said something that made me think. She said, “…but do you know what Samantha?” (Hilary and Faith are my only two friends who refuse to call me Sam. They both state that as they have known me practically from birth they have to right to call me by my full Christian name) “…I was thinking the other night, out of the three of us you’re really the only one who can handle and deal with something like this. If this happened to me or Faith we wouldn’t be able to cope.”
So ever since then I have known why I am fighting this illness. I am fighting it not only for me, but for Hillary and Faith, for my family and friends. But most of all I am fighting this because God, Allah, the superior aliens in the sky or whatever greater power you want to believe controls things, decided that out of all the people I know, I was the one strong enough handle this, and that one day I would be able to conquer it.
*Please note all the names of people in my blog have been changed to their celebrity or fictional character counter part to protect their identity. Under no circumstances should this be a reflection of the named celebrity or fictional character.
Title taken from the song “Get by with a little help from my friends” by The Beatles
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Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME Blog, Sam McInnes, Samantha McInnes
Unfortunately when you are ill with M.E, it means that sometimes you are unable to attend …. that otherwise you wouldn’t have missed for the world. After returning to work in November, I had another M.E relapse in December which meant I was off work sick until the beginning of January. During this time, one of the most vulgar and hilarious women I had ever worked with found new employment. Unable to party the night away with her to grieve her leaving, I decided to write her a speech instead.
So here it goes:
My darling Joan Rivers,
I have decided to write speech for you leaving today, as most likely the last time someone wrote one for you was on your wedding day and you were too fat and pregnant to enjoy it. Probably the best thing would be to go back twenty odd years and give you a speech about contraception, but unfortunately my time machine is quite ready yet, so you’ll just have to make do with this.
I had actually wrote another speech for you, in fact it was more of a performance, where I compared you to a prolapsed womb that hung below a women’s knees dragging her ovaries along the ground like an apes knuckles. After that, I compared you to the matron of a nursing home, who smeared shit in residents’ faces, but it required a lot energy which I don’t have right now.
Anyway Joan Alexandra Molinsky Sanger Rosenberg Rivers, we are all gathered here to say a mournful farewell to your slightly psychotic ways. Jean Paul Richter (a German Novelist) once said “Mans’ feelings are always purest and most glowing in the hour of meeting and farewell.” So Joan – this is from the heart.
Over the course of the past four years, we have shared many good times together; such as the time we decided it was a good idea to dismantle a set of monkey bars or the time you invited us all around to your house and myself and Cheryl Cole drank the whole bottle of your £70 champagne and then Colin and Justine ended up being sick all over house. Or the time you got divorced to that plonker who used to all always phone and say in a stuck up voice, “Mr Rivers here, can I speak to Joan?” However, there were also some not so good times. Like when your daughter moved to Australia or when you fell over banged your head, ended up in hospital and we all thought you were going to die. But through both good and bad times you have kept us laughing in both joy and disgust and left us in a constant state of soiled underwear.
I can honestly say I have never met anyone quite like you in my life and doubt very much I ever will. You are one in a billion Joan and all I can say is if you bring half as much joy to the lives of you new co-workers, they will be very lucky people. I shall miss you “like the desert misses the rain” and I wish you good luck in your new job and any other employment venture you fall into after it. But most of all, from the bottom of my heart I wish both you and the Welsh man all the joy and happiness in the world for your future together.
I was going to end this with something memorable. I thought perhaps the last line from “Breakfast at Tiffany’s” would be appropriate. but that happened to be “Cat! Cat!” So I decided to go for something from Tom Petty instead, “You and I will meet again when we’re least expecting it. One day in some far off place I will recognise your face. I won’t say goodbye my friend, for you and I will meet again.”
Needless to say she loved it!
*Please note all the names of people in my blog have been changed to their celebrity or fictional character counter part to protect their identity. Under no circumstances should this be a reflection of the named celebrity or fictional character.
Title taken from a Joan Rivers quote.
All content listed through the site is copyrighted. Unauthorised use, duplication or republication may result in legal action.
Tags: Chronic Fatigue Syndrome, Joan Rivers, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
WARNING: This is not my usual light hearted Blog
Today is the 25th January 2011. It was my first day back at work after being off for a period of six weeks due to another M.E relapse. When you are fit and healthy, having six weeks off your work seems like you have won the rollover jackpot in the Euro Millions. However, when you’re feeling like you have just woken up from being in a coma for over a year after being ran over by Military Battle Tank several times, those six weeks off feel more like you have been sent to hell to be tortured by demons as punishment for a crime to horrifying to speak of. Hence, when those six weeks were up, I was actually really looking forward to going back to work. I thought I was feeling well enough. I thought would be able to handle going back. I thought if I took it easy and didn’t try and do too much that everything would be ok.
I thought wrong.
I have realised now that it has become way to easy for me to pretend to everyone that everything is fine by put on a smile, laughing it off when I feel as if I am going to pass out after walking up set of stairs or to ignore the fact that my arms and legs are aching to such an extent that all I really want to do is sit down and not move them for a minimum of seven years. This however, is only a short term solution. In the long run, it doesn’t quite work like that. In the long term, the more I try and pretend that everything is ok, the more apparent it becomes that everything is far from being alright.
After my first day back at work (on reduced duties I would like to add) I came home feeling as shit as I did at the start of those six weeks of hell. I am not ashamed to say that when I came home I cried. I cried because I was exhausted and wanted nothing more than to sleep for the rest for this year and the next. I cried because at 23 I couldn’t even do a single days fucking work without feeling like absolute crap. I cried because I was annoyed that I would have to go through everyday feeling like shit, uncertain as to when I would start to feel normal again. But what I cried for most of all, is that this stupid fucking Myalgic Encephalopathy or Chronic Fatigue Syndrome or what ever the fuck you want to call it has changed me and changed my life to such an extent that I am no longer living life, I’m just existing. And there is fuck all I can do about it.
Title taken from “Breakfast at Tiffany’s” By Truman Capote
Tags: Chronic Fatigue Syndrome, myalgic encephalomyelitis, myalgic encephalopathy, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
When I was 16, I was lucky enough to take part in a World Team Challenge trip to Tanzania. This was how I met my good friends Sandra Bullock and Jennifer Aniston (Jennifer, you haven’t been introduced to yet, but I feel it’s only a matter of time). During this trip we worked in an Aids orphanage, went on Safari, climbed Mount Meru and spent some time relaxing in Zanzibar. Through out our 5 weeks in Tanzania, the one piece of advice we were given over and over and over again was not, “Don’t get eaten by an animal” or “Don’t wonder off on your own” or even, “Don’t take a malaria tablet before you got to your bed with no water as it will burn your oesophagus and you will have to go to the hospital where a fat man will lean on your neck” (advice I could have been doing with). No. It was in fact “Under no circumstances get the shits”. Now until this point in my life the shits had not really been my main concern but after all this fear mongering, I went out my way too make sure I never caught the terrible condition that inspired this song:
“It comes out your bum like an automatic gun – diarrhoea, diarrhoea
I was walking to the chippy and I fell on something slippy – diarrhoea, diarrhoea
When you think your friends are joking but your pants are brown and soaking –diarrhoea, diarrhoea”
It wasn’t until January 2011 that finally got over this fear.
My older sister Posh Spice is getting married to the Soap Awards sexist male in summer 2012. Now most brides to be tend to be slightly scary – and by that I mean bloody psychotic. Posh Spice however, is the complete opposite. She is so relaxed about her pending nuptials and the organising of her wedding I am starting to think she may know something we all don’t. In all honesty, this works better for me as I am the maid of honour and if she started freaking out and becoming a bitch about it all I would have to slap her across the face extremely hard. It’s not just brides that are crazy when it comes to weddings it’s also people in the wedding business. We went dress shopping once – and only once as it is an experience I would like to never repeat again in my life. So much so, if I ever get married I am considering walking down the aisle in my jeans, Bruce Springsteen T-shirt and a pair of Converse. One shop we went into every single person who worked there shouted at us in what I can only describe as a Glaswegian neddy high pitched whine, “When’s the weddin’?”
I actually thought I was under attack and so jumped to the ground and took up the foetal position. Another shop we entered made Posh Spice try on dresses that made her look like a 56 year old drug-using prostitute, who to escape life on the streets decided to marry one of her “customers”. Now this is in no way a reflection of my sister. Posh Spice is by no means a drug-using prostitute and certainly does not look 56. In fact she is actually very good looking and I am not just saying this because she looks like me. What this is a reflection of is how crazy people in the wedding business are. So when the mother of the bride (who is one of those psychotic wedding people) decided we all had to go to The Bothwell Wedding Show, to say I wasn’t looking forward to it was an understatement.
At this point I had been back to work for two weeks and although M.E was kicking my ass slightly (as you may have seen for my other blog) I had taken it easy, had the whole weekend off and thought I would be well enough to walk around the wedding show and ignore all the crazy people. Life, however, had other plans. On the Friday after coming home from work and taking to my bed, I was really warm. Normally I am always freezing, even if the central heating is on full I am still walking about with about 16 layers on and a blanket, so this was strange to me. On this night I was so warm I thought that I had final managed to bend the space time continuum and transport myself to theCaribbean. When I opened my eyes though, I was still in my bed room in Moodiesburn and extremely disappointed. On the Saturday when I woke up, I was wasn’t feeling great but I thought to myself, ‘It’s fine it’s just because I it had been back at work and just need to rest’. So that is exactly what I did until 4am in Sunday morning.
At 4 am on Sunday morning I awoke suddenly with terrible abdominal cramps and had the thought, “I really have to get to the toilet.” An hour and a half later I returned from the bathroom, after losing half of my bodily fluids, and went back to bed. An hour later the same thing happened and this then continued through out the rest of the morning. By the time Posh Spice came I looked like a heroin addict who was attempting to come off an opium high that I had been on for the last 10 years. Due to being gaunt and ill a lot I tend to always look like a bit of a junkie (which I prefer to call heroin chic) but this was taking it to a whole new level. There is way no I was managing to leave the house never mind walk around a wedding show full of the mentally insane. So while Posh Spice and Demi headed off I sat in my room hoping to God this was not another symptom of my M.E and seriously gutted about missing the wedding show (not).
Luckily I had booked a doctors appointment with House the previous week to discuss something else. The next day I headed off to see him, dreading that he would say, “Oh this is just your M.E. You are going to have to put up with this from time to time”. I really didn’t think my intestine could have handled that. When I got to the doctors, still looking like a detoxing drug addict, House greeted me in his usual friendly and concerned manner. After checking me over he came to the conclusion that I had caught a stomach bug that would pass in a couple of days. I was handed a prescription for antibiotics and sent on my way. When I left the doctors I was ecstatic. I, Samantha McInnes, who has this really crappy illness that no one knows jack about, was sick like normal everyday people. I had the shits and I had never been so happy because I knew that after a couple of days I would be fine. I actually wanted to scream at the top of my lungs, “I have the shits. YAS!” but I thought I may get locked up in some institution where there were likely to be a lot of ex-wedding planners, so I held it in and screamed in my head. After I left the doctors I had to phone my work to tell them I was sick again. When I phoned at first I think they thought I may have won the lottery. I was so happy to be phoning and telling them I had the shits I would get over it in a couple of days!
And that, Ladies and Gents, is how I got over my fear of the shits!
Title taken from The Tanzania Motto meaning Freedom and Unity
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Ever since Sandra Bullock passed her driving test when we were 17, we have been on many a road. From our very first one over the Campsies and up to Stirling Castle in her black mini, there have been unwritten rules of a road trip. These are as follows:
1) The first rule of a road trip is you don’t talk about the road trip! Hang on, that’s the rules to my Fight Club…
2) A good soundtrack. Like a good movie soundtrack, the songs played on a road trip will set the mood for the entire journey. A soundtrack can make or break your 3 hour drive to god-knows-where. Anthems are what are needed, songs to sing to. It is also important to mix up the genres to match the different personalities within your vehicle. What is not appropriate is obscurity, no one wants to sit for three hours listening to album tracks of a band that they don’t know or care about. Some essential tunes always on my road trip playlist are: ‘Free Falling’ by Tom Petty, ‘You Oughta Know’ by Alanis Morrisette, ‘Perfect Gentleman’, Wyclef Jean, ‘9 to 5’, Dolly Parton, ‘Africa’ by Toto and ‘Always’ by Bon Jovi and finally ‘Belle’ from the hit Disney musical ‘Beauty and the Beast’.
3) You must bring munchies! There is nothing worse than having a road trip and dying of starvation before you reach your destination. However, be very aware of how much you drink through out your time in the car. No one wants to stop every 5 minutes for you to pee.
4) YOU ARE NOT ALLOWED TO FALL ASLEEP. If the driver fell asleep everyone would be dead. Don’t be selfish and fall asleep while they are trying to stay awake.
5) No reading materials. Reading is a solo activity and if you read while driving you are isolating yourself from the Road Trip bonding…and it’s rude.
6) Bring with you topics of conversation to avoid times of awkward silence. Some of my favourites are; who would play you in a film about your life? What is you theme tune to life? And who would you like to be your celebrity granddad?
7) Wear deodorant and do not fart. A car is a confined space and bad smells travel quickly. I carry these rules with me still today.
So when I embarked on a car journey to Manchester for a conference in February, I came prepared. At 6am on Tuesday 8th February Posh Spice, Kylie, Tyra Banks and I embarked on our 3 hour journey to the land of Oasis, The Smiths, Coronation Street and United. As usual I was prepared for the journey ahead. I had one of the best playlists I have ever made to date, munchies in the form of Percy Pigs and I smelt as fresh as a daisy. Now any M.E sufferer knows that a good night sleep is essential to having a good day and so getting up at 5am is not the wisest thing to do, but I thought, ‘I am sitting on my ass most of the time, I will be fine’. By the time we got to Manchester, sitting in a car as small as a dodgem didn’t do my legs any good. In all honesty, does that do any one’s legs any good? They were aching and sore but this was not unusual so I just shrugged it off and attempted to get on with my day.
After lunch we were taken into a cinema hall for a presentation. Through out the day the aches and pains in my legs had started to get a lot worse however it wasn’t until this point that they started to become unbearable. Sitting next to Kylie, I tried my hardest not to show I was in agony. I either didn’t try hard enough or the pain was just too much to handle because straight away Kylie noticed my pain stricken face and attempted to clear some space in an extremely crowded cinema hall to allow me to stretch my legs. After the conference finished the road trip back to Scotland was not the usual pleasant experience. Not even Percy Pigs or singing “Always” at the top of my lungs helped my legs. I naively thought that all I needed was to go home and go to my bed and that by Friday, when I was back at work again, everything would fine.
By the time Friday came I could barely walk. I was however, still determined to get to work even though now looking back I have no idea how was going to stand on my feet for 8 hours serving customers. When Posh Spice came to pick me up, I wasn’t able walk out to the car without her holding onto me and supporting my weight. At least one of us has common sense, as at this point, Posh decided that the only place I would be going was to the hospital. You know the advice that you should always wear matching underwear just in case you are in some kind of accident? Well this is advice I should really have listened to. When you go into hospital reporting numbness, pins and needles, weakness and aches in your legs there are certain tests they have to do to rule out spinal damage. One of these tests is for the doctor to stick their finger up your ass to make sure you still have control of it. So when the doctor said this would be the next test she would be performing my immediate reaction was not, “Oh god I really don’t want a finger up my ass” it was in fact, “This was a really bad day to wear my superman pants!” After running numerous tests the doctor came back and said it’s probably just an M.E flare up and I should just make an appointment with my GP and at that, she left Posh Spice to struggle to get me out of the hospital and get me back to the car by practically carrying me.
The ironic thing is that 2 weeks prior to this I had been watching one of those programmes where people want to move abroad and some blonde women helps them find a job and a house. This particular couple were moving to Spain for a more relaxed pace of life as the wife suffered from M.E and was unable to walk without being aided by a walking stick. I remember so very clearly thinking at this point, “I am so lucky, I may have M.E also but at least I don’t need help to walk”. As soon as we were in the car I phoned to get an appointment with House and was told I would have to wait until Thursday and all they could offer me was a phone appointment even though I stated that I hadn’t been able to walk for almost 3 days now. At this point, I felt totally helpless and I would be in a state of Limbo for the next 6 days…
Title taken from a quote from “Fight Club”
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Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Road Trip, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam McInnes, Samantha McInnes
‘The Bodyguard’ is a romantic thriller starring Whitney Houston and Kevin Costner that was released in 1992. After its release, due to its hugely talented protagonist, the soundtrack went on to become the best selling soundtracks of all time. Its signature track, “I will always love you” became the best selling single by a female artist in music history and won a Grammy award. I was 5 years old at this time and remember this soundtrack vividly as Demi purchased it and Posh Spice and I regularly danced about the living room to “Queen of the night”. When Whitney performs this particular number during the film, her fans become over-excited by her Cleopatra-like hair and start rioting. At this point, Kevin rushes in, picks Whitney up and carries her out of the club and to safety. Little did I know that one day I would be playing the Whitney role in this scene – only without Cleopatra hair, the club and the wild fans.
After my 6 days in Limbo waiting for my phone appointment with House, my legs had gotten worse. I could barely walk and I could only manage to walk small distances by holding on to furniture. I was like a baby learning how to use their legs for the very first time. Even the smallest movement felt as if a ten ton weight was being dropped on them. House phoned at 10am and this is how the conversation went:
House: Hello Samantha?
Me: Hi House how are you?
House: I am good. How can I help you today?
Me: Well it’s my legs. They kind of stopped working.
House: (Confused) What? They stopped working?
Me: (calm and collected) Yeah I went to Manchester for work and they got really sore and then they became really weak. I went to the hospital but they sent me home and told me to make an appointment with you but since then they have gotten a lot worse. I can barley walk and to move them even the slightest is extremely painful.
House: (serious tone) I think you have to come into the surgery as soon as possible and I am going to get one of the other Doctors to look at you straight away. This isn’t right. You know Samantha, I know I have said this many times but my door is always open.
Me: (Still calm and collected) Thanks House.
Now what I never realised at this point was that getting to the surgery would prove to be extremely difficult. I mean I could have phoned a taxi but the last time I checked, taxi drivers don’t tend to come out to your house and carry you out to their car. So I phoned Ross Kemp (My dad) but unfortunately he was working at the time. I then thought, ‘It’s fine, I’ll phone Demi she will come home from work and take me’. However I quickly remembered that Demi is 5ft 4 and (even though I weigh practically nothing) there was no way in hell she would be able to carry me out to the car. Luckily I had one other idea left. Jennifer Garner and Kevin Costner were off work and doing some couples bonding. I decided to interrupt them and ask if they could possibly drive through and escort me to the doctors – and by ‘escort’ I meant carry. Without hesitation they said yes.
Kevin drove so fast to get to Casa del McInnes that he put the theory of relativity to the test and he and Jen arrived ten minutes before I had actually called them. After explaining to me why they were there, it was time for my Whitney moment. As Kevin scooped me up, rushed me out of the house, into the car and up the Doctors, Jen sang “Queen of the night”, while Ben the dog played the role the rioting fans. Now at first getting to play the role of Whitney in this iconic film was a dream come true. However once we got to the surgery and Kevin also had to carry me in like a 3 yr old child who had hurt there knee in front of at least 25 people, the novelty of being Whitney kind of wore off. When my name was called again, Kevin had to lift me into the doctor’s office with Jen in tow (she had stopped singing “Queen of the night” at this point though). I have surmised from the look on this guy’s face that not many people get carried in to him very often. As soon as he seen this he said, “Ok, I think we better just get you to the hospital”. At that, Kevin was left to do his Bodyguard routine yet again. I was bundled back to the car and taken to the Hospital where Demi was waiting to meet us.
Once in the Hospital, Mr Costner was given the chance to rest his arms before he put his back out and we were given use of a wheel chair. Unfortunately, after a short wait I had to say goodbye to my bodyguard as only family where allowed past stab, bullet and bomb proof doors that are a regular fixture within Glasgow A&E departments. As Kevin and Jen left in true “Bodyguard” style I did sing “And I-I-I-I-I-I-I-I-I-I- always love you!” However the stab, bullet and bomb proof doors were also sound proof so I don’t think they heard me. After this there was a lot of waiting about, during which I drank a lot of water to make sure I kept hydrated. Looking back I wish I hadn’t. When you’re in the hospital and you can’t walk and you need to pee there is no Kevin Costner to come and carry you to the toilet (not that my Kevin ever did this) and due to health and safety they can’t let you drag yourself there and hope you make it without falling and breaking something or knocking yourself unconscious. Instead, they wheel out a chair called a commode and make you pee in a paper bowl in the middle of a busy ward with only a curtain to protect your modesty. Now, ladies and gents, I suffer from something known as ‘pee fright’. Much like stage fright, when there are people about I find it difficult to perform. I believe this is due to living in a house with all women who do not understand what personal space is and just burst into the bathroom whether you are on the toilet, in the bath or just hanging out. What made this time even more difficult is a nurse coming in every 2 minutes being like, “is that you done Samantha?” 20 minutes later, after closing my eyes putting my hands over my ears and singing to myself “Penny Lane” I finally managed to empty my very shy bladder and returned to a very uncomfortable hospital bed traumatised.
It wasn’t until 5 pm that and finally seen a doctor and was told that I was being admitted much to my disappointment. I really didn’t want to have to pee in one of those god damn chairs again! And so began my first night in hospital with only Truman Capote’s “Breakfast at Tiffany’s” for entertainment. For those of you who haven’t read “Breakfast at Tiffany’s” it’s a novella which basically means you can start and finish in about 40 minuets. As much as I love this particular novella, there is only so many times I could read it in a 12 hour period.
Title taken from the film “The Bodyguard”
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Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
I once foolishly went on a ghost walk through what the BBC once described as “The most haunted place in Britain”, The Edinburgh Vaults. Now I am someone who likes answers. I don’t like not knowing the who, what, when, where and why’s and for that reason the unexplained and so called supernatural going ons scare the shit out of me. Jennifer Garner will vouch for this as she was also on this trip and for the entire evening I never once let go of her arm, as I was scared that if I did, some kind of evil spirit would steal me away to the after life. I also love the TV program “Supernatural” as it teaches you how to defeat various types of supernatural beings and I feel this information will come in very useful one day, but I refuse to watch it after the sun goes down as that is when all the scary shit goes happens. You never hear of folk seeing ghosts at 3pm, its always after dark. Due to this completely rational fear of the unexplained, I hate anything concerning death. So a hospital was the perfect place for me.
As soon as I had settled into my bed for the first evening of my hospital vacation, I noticed that the bed across from me had all the curtains drawn. I thought to myself “they have the right idea. It’s so bright in here god knows how anyone could get some rest”. I then settled down to read my book for the 16th time. Now the last time I had peed was at 4:30pm it was now 12:30am and during that time I had possibly drank my weight in water (I was really thirsty). This was only my second time ever being admitted to hospital, the first being when I got my tonsils out, aged 7, so I didn’t really know how things worked. If you can’t walk do people come and ask you if you need to go pee or do you shout or press the big red button, or is that just for emergencies? When I started needing to pee at 9:30, I thought “its fine, I’ll just hold it in, the nurses seem really busy and I really don’t want to have to pee in that god damn commode”. One hour later the need to empty my bladder had increased ten fold. However at this point the nurses were doing their drug rounds down the other end of the ward and I really didn’t want to have to press the buzzer as it made a really annoying sound. In all honesty I still wasn’t really sure if that was purely for emergencies or not. By 11:30pm I was like, “if I don’t tell someone I need the piss chair out now, then I am going to pee the bed and then possibly drown in a tidal wave of my own urine as there must be at least a loch’s worth of liquid in my bladder”. Just as I was about the press the button, everyone’s fluid stained cubicle curtains were shut over and all the staff seemed to be running around like something was going down, my first thoughts, “Perhaps a gang shooting?” My curtains were not fully shut over, however. There was a small gap between where the two curtains met. I, clearly being a nosey bitch and hating not knowing what was going on, looked out of that gap and what I seen scared me for life. Two men were wheeling a trolley with an empty black bag into the cubicle across from me; the cubicle whose curtains had been drawn the whole night. I now realised why they were shut. The old woman who I assumed was “sleeping” was actualy DEAD!
Now not only was I trying not to pee myself, I was also trying not to hyperventilate at being the closest I had ever been to a dead body in all my 23 years on this planet. I had visions of this woman’s spirit leaving her dead body and trying to possess the nearest living one, which just so happened to be mine. Much like what happened to Phoebe in “Friends”, I would have to show her every goddamn thing before she would leave my body and I didn’t know of any lesbian weddings happening anytime soon. I then started looking for salt to scatter around me to ward of unwanted spirits (a must for anyone wanting to protect themselves from the supernatural). During this panic to find the salt I foolishly glanced in the direction of the dead woman’s cubicle again to make sure her spirit wasn’t floating on over. At this exact moment, the curtain opened slightly and as it did I saw the Nurses busily prepping the dead body to be taken to the morgue and at that very moment, a dead arm fell off the bed. Now I am not going to lie, the shock of seeing a dead woman for the first time, even though it was only an arm, made me let a little bit of pee out. I mean it wasn’t enough to be classed as me peeing myself but it was enough to make me stop panicking about the dead women’s spirit entering into my body and refocus my energy into not flooding my bed with urine. As soon as the woman’s lifeless body was wheeled out of the ward, I pressed that button and begged for the commode. And for the 2nd time that day, I had to go through the humiliating experience of peeing into an adult potty, like an extremely tall 2 year old child. This time I did not need to close my eyes and sing “penny lane” to allow my shy bladder to empty. It did it all by itself, just like a big girl!
Now, if this was only my first few hours in hospital god knows what the rest of the stay was going to be like.
Title taken from the mind of Samantha McInnes
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Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Before I actually knew anything about Chelsea Handler, I already had a preconceived opinion of her; a dumb blonde, female comedian on the E network? The channel that is responsible for intellectually challenging television such as “Keeping up with the Kardashians”. I thought this has got to be an extremely unfunny women talking crap about self destructing celebrities no one even cares about, taking the piss out of peoples fashion faux pas and putting herself on some kind of self-built Hollywood pedestal. I was right about Chelsea’s show consisting of people talking crap about self destructing celebrities. What I was wrong about was that Miss Handler was stupid and unfunny. I found out during my 5 day stay in hospital that Chelsea was actually a highly intelligent comedy genius, who’s extremely honest and blunt approach to life was just the answer to all this celeb culture crap that I had been looking for.
After my first delightful evening on a haunted ward, I was desperate to be discharged. It was also a Friday, which meant if I wasn’t discharged that day, I would be in over the weekend and God only knows when I would get out or how many other dead bodies I would find myself in close proximity to. This caused me great concern as the following week was the Glasgow Film Festival and they were showing, for the first time ever in a cinema, Superman 2: The Richard Donner Cut (this will be explained in a letter post). Even if Kevin Costner had to carry me into Cineworld in a hospital gown with my ass hanging out, I was not missing this epic moment in Superman history.
That morning I was offered the chance to wash the smell of death from me. When you’re in hospital and don’t have use of your legs, again for health and safety reasons, the Nurses don’t let you do what I had previously been doing to clean myself; sitting on the side of the bath tub, throwing myself in and hoping to God I didn’t bang my head and drown, then getting Demi to help me back out. Instead I had to get a Nurse to help me undress, put me in a gigantic bath tub, help me back out, dry me and put my clothes back on again. Many people have said to me, when you go to hospital you lose all dignity, but I feel this is an understatement. Being a 23 year old who had to be washed and dressed by a Nurse, is definitely a memory that will stick with me for the rest of my life, as a low point. If this was a film, this exact moment would be the point that changed the course of the movie. Under no circumstances was Darth being allowed to control me like this again. This was the moment I swore to myself that no matter what, M.E would never again put me in that situation again. All that coupled with the fact my hair has a natural curl to it and I had no hair straighteners, meaning I had to sit looking like and an extremely bad Susan Boyle impersonator, pissed me off even more! I couldn’t wait until visiting hours.
Just before my visitors were due, a lovely Physio came to see me. She was Irish so from now on she will be called Lois Walsh. Louis seemed to be the most clued up person I had spoken to with regards to why my legs just stopped working. She said that over the past 6 months, on and off, I had spent about 9 weeks in bed not well and not moving my legs. That coupled with the severe muscle aches, led to my legs (which once ran 4 miles everyday) to waste away to practically nothing. She followed that with, “I can’t help your M.E but what I can do is help build up your legs again without sending you to the point of exhaustion.” I was referred for Hydrotherapy and was shown basic exercises I could do; wrapping a towel around my feet and using my arms to lift my legs, to try and get them moving again. To this day I still continue to do these exercises three times a day, although I no longer need a towel or the use of my arms.
Visiting arrived at 2:30pm and with it came Demi, Posh, Rumor, Jennifer and Kevin. Just as they walked in the door, an orderly, armed with a wheel chair, came to take me away for an MRI scan. I couldn’t believe it. I had just went through one of the worst days of my life and the one thing that had kept me going was knowing I would soon see some familiar faces and now even that was taken away from me. Two hours later I returned and my visitors where gone. Left in their place, however, was Jennifer’s Kindle. Now before this I had never been particularly enthusiastic about the Kindle, but after turning it on and reading “1984”, I was hooked. I grew to love the Kindle so much, that only a few days after leaving hospital, Kevin Costner turned up to my house to gift me my very own, Thank You again Mr Costner. The Kindle also helped me keep my sanity when the doctor returned and told me, that due to it being Friday, the results of my MRI would not be made available until Monday and that I would have to be kept in over the weekend.
During that evening’s visiting hours, Ross Kemp showed up with a portable DVD player and seeing as I am a massive Audrey Hepburn fan, he also brought me “Breakfast at Tiffany’s” on DVD, which I had been dying to see again since reading the book 600 times in the past 24 hours. I later texted Jennifer to thank her for saving my mental health by leaving me her Kindle; it was going to be my best friend over the weekend. Yes I do realise that you are not meant to use your phone in a hospital but I thought that since the only critical patient on the ward was already dead it would be OK. She replied to tell me to read Chelsea Handler’s books as they would cheer me up. As I said before, I wasn’t that sure aboutChelseabut thought, “I have already been bathed by a women today, so what have I got to lose?” This was the best decision I have ever made.
When a book is entitled “Are you there Vodka? It’s me Chelsea” and one of the first stories you read, is about how Chelsea gets arrested for a DUI and ends up in a state penitentiary for identity fraud, being pursued by a women who just murdered her boyfriend, then it’s right up my street. I was hooked. For the rest of the evening, I sat, laughing out loud at the ridiculous situations Miss Handler had gotten herself into over the years, while my fellow inmates, sorry, I mean patients, looked at me while thinking “clearly the psychic ward is full”. Soon I was trying not to pee myself again, but this time due to laughing so hard.
Thank You Jennifer and Chelsea, you both brightened up my extremely shit day.
Title taken from “Are you there Vodka, its me Chelsea” by Chelsea Handler
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Tags: Chelsea Handler, Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
I can’t remember the first time I met my friend Sandra Bullock. If I was to guess, I would say it was in one of the many dark, paint-peeling, sick smelling corridors of our Charter Marked High School. To this day I am still unsure as to what a Charter Mark actually is. I imagine it has to be something pretty damn impressive, as not only was it written all over every letter, hand book and many of the teachers foreheads, there was also a massive banner, the size of six double Decker buses, hanging outside of the main entrance. Not only to advertise this prestigious award to those walking by but to those astronauts who inhabit the International Space Station. I may not remember the first time I met Sandra but I do recall the first time I decided she was going to become a life long friend. We were in the gymnasium of our “Charter Marked” school training for our trip to Africa. Being adolescent girls who longed for adventure and had the attention span of gnat, the current game of rounder’s didn’t seem to entertain either of us, so we decided to ascend to the top of the climbing frame and serenade those below with our very own version of the Shania Twain classic, “Man, I feel like a women”. I knew that this coupled with her extreme honesty made Miss Bullock an ideal candidate for my “crew”. Since this day, Sandra has tried many times to faze me out, including going to the extreme of travelling to the other side of the world to escape my eccentricities. She has yet to succeed and unfortunately still holds the position of being one of my closest friends. She performed this duty well by bringing me back to reality and causing me to almost wet myself yet AGAIN, during my final days of incarceration.
Day 2037459 (or what felt like) of my hospital stay began just like the others. I opened up the rucksack of clothing Demi had brought with her the previous night to change into something clean and a little fresher smelling. To my dismay, along with my favourite Idlewild hoodie, Demi had also packed a pair of silk spotty Pyjama bottoms. Now those of you who regularly spend a lot of time in bed wearing silk PJ bottoms will know two things:
1) They make your ass sweat profusely.
2) Due to your ass sweating profusely they tend to ride up and stick to your derrière like Lycra to a fat man.
I also hadn’t been able to shave my legs for over two weeks by this point due to not being able to move them. This was not a service offered by the nurses who gave me my daily scrub. This meant that when the silk PJ bottoms slid up and stuck to my sweaty ass, it revealed legs that resembled a Yeti’s. Not the sexiest of looks. After changing into my new “Extreme Tramp” look, the Physio returned to try me out on a Zimmer Frame. I know what you are thinking, not really the must have fashion accessory for Spring/Summer ’11. It would be very unlikely to see Kate Moss walking around the streets of LDN clutching a black Zimmer with a diamond encrusted skull protruding over the front. Yes, but it did mean that I no longer had to pee in the bloody commode and although it took me 40 minutes to walk the 10 feet to the bathroom, I was finally able to pee on an actual toilet again.
While I was busy day dreaming about peeing on a toilet pan; getting to lock the door behind me so no one could just pop in and ask how I was getting on, the feel of the cold porcelain toilet seat on my bare ass, being able to flush after I had urinated, I failed to notice an Adonis of a doctor enter the ward to do the daily rounds. It wasn’t until a shadow was cast over my bed and I heard him say my name that I looked up to see the hot doctor, who looked like a love child of Johnny Depp and Jake Gyllenhaal, (due to this we will now call him Deppenhaal). My first thought was “thank god these sheets are covering up my sweaty, silk PJ stuck, ass. If only I had another to put over my head and cover up my Susan Boyle hair”. At that Deppenhaal said “Well Miss McInnes I see the Physio has been in today. Why don’t you show me how your walking with the Zimmer frame is coming along? At this my heart sank. In my head I was cursing God, “Why, oh why, are you doing this to me? Did you get so sick of watching the re-runs of Friends on E4, that I have become your daily source of entertainment? Is it not enough for you that I have nearly peed myself 6 times since I have been here, that you have to humiliate me in front of this part time model/ part time doctor? ” No matter how hard I tried to pull the PJ bottoms out of my ass, by the time Deppenhaal helped me to stand up in front of the Zimmer frame the silk was once again attracted back up to the sweat fest and showing off my Yeti legs, which ironically matched the Susan Boyle hair. After Deppenhaal left, I texted Sandra Bullock to tell her about God’s cruel joke and ask her if she still thought I was in with a chance. To which she replied “In all honesty Sam, I think you lost him at the “stick to your ass PJ’s” never mind the hairy legs, Susan Boyle hair and the fact you were using a Zimmer frame”. At this I quickly gave up on the dream of marrying Deppenhaal and raising his beautiful children with unruly locks of hair and laughed so hard that I nearly added pissing myself to the “con’s” list.
That evening Posh Spice and Jack Branning came to visit, bringing with them the classic hospital game Jenga! What more do old dying people need than to have a heart attack every time someone knocks over the tower, as they think they are back World War 2 and that the Nazi’s are once again bombing their fair city. Luckily for the frail old people of the ward, when Monday came, a doctor (not Deppenhaal unfortunately) arrived to tell me that they were now sure this was an M.E flare up and as soon as the Physio returned to present me with what would be my must have accessory for Spring Summer ’11, two walking sticks, I was free to go. You know what that meant? Superman 2: The Richard Donner cut, HERE I COME!
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Richard Donner is an American Film director whose work includes The Omen, Lethal Weapon, The Goonies and one of my favorite films, Superman. Donner was originally commissioned to film both Superman and Superman 2, and so filmed many scenes for both films simultaneously, which meant that when the filming on the first Superman wrapped, its sequel was almost complete. However, due to disagreements with the producers about the direction in which they wanted this follow up to go, after Superman was released around the world, Donner was replaced by a British Director named Richard Lester who re-shot many of Donner’s scenes to enable him to take the Director’s credit. In 2001, whilst Michael Thau was working on restoring and releasing to DVD, Superman and Superman 2, he came across the original Donner footage for Superman 2 in a vault in England. After prolonged pressure from fans around the world, in 2005 Michael Thau and Warner Brothers agreed to create Superman 2: The Richard Donner Cut using footage from screen tests to fill in the gaps that were left by Donner’s replacement and it was released to DVD in 2006. In February of this year The Glasgow Film Festival in collaboration with Cineworld Cinemas decided to screen The Richard Donner Cut on the big screen for the first time ever and for one night only, with an introduction from Mark Millar, the creator of Wanted, Kickass and Superman: Red Son. Ladies and Gentlemen, it’s my pleasure to tell you that for this historic event in Superman history, I was there, sitting in the front row like the crazed Superman geek that I am.
Getting to the cinema is not an easy task when ones legs refuse to work properly. Yes, I now had my new best friends, “The Sticks”, to lend a helping hand but it was still extremely difficult to stand up and walk from my living room to the bathroom never mind around the City Centre of Glasgow to get to the cinema. Mr Costner, my own personal Bodyguard agreed to come and pick me up and drop me right outside the cinema. However, some inconsiderate lorry had over-turned and blocked the road across both lanes, resulting in the traffic coming to a standstill and Kevin being blocked in. This left me with two options; I could either wait way for Kevin and hope to God that Strathclyde Police had the brain power to unblock the road in the next two hours or phone a taxi to take me on a different road into the city and to the cinema. I hadn’t spent the last week in hell only to get out and risk missing my stairway to heaven as a result of some nonchalant police officers, so a Taxi it was. Unfortunately this also came with some risks. For example, when it took me 15 minutes to walk the 3 meters out of my driveway and into the car, instead of offering me a helping hand, the driver picked up a newspaper and continued to read that days Dear Deirdre column. I suspect this was because he was either; a closet homosexual, having an affair with a white witch who threatened to curse him and turn his penis green if he ever tried to end it, was considering having a sex change or all of the above. When I then tripped and fell into the taxi, the grunting noise he made was clearly due to his dismay at Deidre’s ill-conceived advice and had nothing to do with the fact that he was a knob. Jennifer Garner met me at the cinema and it took us only 30 minutes to walk the 10 yards from where the taxi dropped us off to Europe’s tallest cinema complex. Luckily for me there was a lift.
As I have worked in retail for several years, I have seen many videos on disability discrimination. Every time I watch one and they show footage of how not to talk to those classed as disabled, I always think to myself, “who the hell does that?” After my ride up in the great glass elevator, I knew. Just as Jennifer and I entered the lift we were joined by a woman who appeared to be an extra from the kids TV program Balamory, due to her choice of primary coloured clothing, cheery manner and the fact that she was a patronising bitch who spoke to everyone like they were a 3 year old child. Hence now she has been nicknamed Balamory. Balamory on seeing me with my new must have fashion accessories for Spring/Summer decided to try and befriend me. Whilst I was standing there in pain she proceeded to patronise me about my choice of Superman bag, (I already told you I was a geek), like I was a child who had ventured out with her new Dora the Explorer bag for the first time. She followed this by then trying to have a conversation with me about disabled toilets. Now by this point had only technically been classed as disabled and out in the “real world” for a day, so I knew nothing about disabled toilets. As my legs were now killing me by this point, I just smiled politely and waited patiently for Balamory to vacate the lift, besides I had just been released from one prison, there was no way I was being admitted to another for breaking Balamory’s skull with “The Sticks”. As she left the lift Jennifer summed up my feelings about this experience in one sentence, “Just cause your legs don’t work, it doesn’t mean you are a retard”. I now knew that she was the reason why year after year I am made to watch disability discrimination videos.
Once on our desired floor we noticed a massive queue had started to form as all Superman fans from across Scotland gathered to worship there God. Now ladies and gentlemen, I never use my M.E as an excuse for anything but there was no way in hell I was getting a shit seat in the cinema or having to walk up 300 million steps to sit down after having already walked more in the past hour than I had done in the past week, so Jennifer went and spoke to the head usher and did what she does best with the males of the species; she turned on the charm and flashed a bit of cleavage. She returned with the news that due to her sex appeal and the fact that I had “The Sticks” we would now be the first people let into the screening. And what did this Usher get in return? A glittering email about how good his customer service was in my hour of need sent to his bosses at head office. I think he would have preferred Jennifer but by that time Kevin Costner had managed to escape the scene of the accident. You win some, you lose some.
Throughout Mark Millar’s introduction and Superman 2 the way Richard Donner imagined it, my legs ached beyond comprehension and I was ready to not move again until at least 2039, but all that didn’t matter, as for those 115 minutes I forgot about M.E and all the shit that comes with it. For those 115 minutes I was invincible and the only thing that could stop that feeling was the end credits.
Title taken from the film “Superman 2: The Richard Donner Cut”
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes, Superman
Today we have a very special post. This post had been written by the wonderful Faith Evans and is the first in our M.E from the other side series
When Sam, Hilary and I were 13 years old, we held (and indeed perpetuated) many teenage misconceptions:
• Oral sex meant phone sex
• Breaking your ‘VL’ was an essential rite of passage
• Dying in a fire was preferable to being seen in ‘Hi-tech’ trainers
During one of our many girly sleepovers, in between scoffing pizza and popcorn, we’d discuss what the future held for us. Hilary would inevitably go on to be a top model, given her flowing blonde locks and beautiful eye make-up. Me, being the home-bird, would do the whole ‘job, marriage, 2.4 children, retirement, death’ routine. Finally, Sam would travel the world for years, living like a nomad, enjoying amazing and colourful adventures. Little did we know, these musings were nothing more than adolescent fallacy.
For those of you who do not know Sam, she is an extremely unique person. She has 100,000 friends from many different places. She does not like to do anything that people would consider ‘normal’. She is obsessed with Superman. She loves tattoos. She is a dreadful car owner. She is the most loyal person I know. She is energetic and loves to keep fit. A few years ago, it was not uncommon spot Sam jogging past in her converse trainers, barely breaking a sweat. It sounds cliché, but she’s the last person on earth I could’ve imagined this happening to.
Sam’s birthday arrived in October 2010. Hilary and I headed down to her house, pressies in tow, to celebrate her 23rd year on this planet. My first thought was, ‘Who is this corpse and what has it done with my friend?’ No offense intended Sam, but you looked so incredibly ill. Everyone continued to make conversation, expertly ignoring the massive elephant in the room – Sam’s ailing health. We’ve all known her long enough to understand that she is a proud individual who does not like to draw negative attention to herself, so we quietly respected her unspoken wishes.
A few weeks later, I popped into Sam’s work for an impromptu visit. I was met by her good friend Jennifer Gardner who explained that Sam had been taken to hospital that afternoon after taking a bad turn. I wasn’t even surprised that I found out in this manner as – in typical Samantha fashion – she never burdens other people with her problems. I immediately called Hilary to let her know. We exchanged worried conversation and tried to call Samantha – no reply. Sam eventually got in touch saying that her legs ‘were feeling a bit rubbish’ (euphemism anyone?) and that she was being kept in for tests.
The next time I saw Samantha, she was using crutches. Crutches. My fun-loving, energetic, weird, adventurous friend could barely walk. I didn’t show how I was feeling that day, but if I’m honest, I felt sick. I wanted to cry. She could barely put one foot in front of the other. It took about 5 minutes to walk 20 metres. Helpless – the only word that sums up how it feels to watch your closest friend succumb to a chronic illness. No amount of fluffy slippers and ‘Get Well Soon’ cards can make any real difference. You feel like a moron when you let it slip that you’re feeling particularly ‘knackered’ that day. You can’t even bring delicious junk food or choccies to cheer your friend up because of their dietary needs (Demi Moore would go spare!)
So Sam, you’re not travelling the world, Hilary is not modelling and I’m moving away from Scotland. Clearly, life had different plans for us. But I ask you, is this necessarily a bad thing? We are all heading down extremely distinctive, exciting and daunting paths. M.E may have taken away your physical health, but it has not conquered your spirit and amazing personality. You have an incredible ability to transform negatives into positives. You’ve actually used your illness to offer support and encouragement to others. I could burst with pride when I think about your achievements. We’ve been by each other’s sides through thick and thin over the past 20 years, and I will always be there to offer you unwavering support. You’re currently facing a massive hurdle, but never forget that your friends are right behind you, waiting give you a leg up!
Love you a ridiculous amount.
Title taken from the film “Angus, Thongs and Perfect Snogging”
Tags: Chronic Fatigue Syndrome, Faith Evans, Jennifer Garner, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
On the 2nd May 2011, after almost a decade of looking, the United States finally managed to track down and terminate their number one Most Wanted terrorist Osama Bin Laden. On a more personal note, another major historical event which was scheduled to happen in May was my good friend Cheryl Cole was turning 21. To celebrate this momentous occasion, she had rented out a penthouse apartment in the City Centre for a one hell of a party. I have been friends with Ms Cole since she was 15 and so have attended many similar celebrations, for instance, for her 16th birthday we went to Laser Quest in a kids play area, so to be honest a “normal” party in a penthouse was a bit of a let down after that. Anyway I decided to get past the fact that Miss Cole opted for a more grown up shindig and attempted to drag Paul and Jane (that’s what I have named my sticks) and myself there.
Now when you walk with two walking sticks, you start to become very self conscious. This is due to the fact that the general population of the world like to stare at things that are not classed as “Normal”, Whether that be people with two heads, people with two sticks or people who are just fortunate to live in Glasgow and not look like they are a junkie or have had a hard life. So as I was going to have my first ever moment where I walked into a room and everybody stopped and stared, I thought I better be looking my best for it. I decided the best way to go about this was to make sure I looked healthy. I have learned that when you resemble a corpse, the most favourable way to do this is to get yourself a tan. However, as I live and Scotland and we have about 1 hour of Sun a year I decided that instead of booking a holiday to the sun that I couldn’t afford I would get that golden brown sun kissed look by faking it.
3 days before the party I started my “Fake Healthy look” ritual. That way if my tanning took a turn for the worst it still gave me sufficient time to fix it, but more likely, I could add another layer if needed whilst still keep it looking natural instead of turning out like an Oompa Lumpa. I got in the bath and I am like “right I need to shave the legs before I do the tan”. If being in the hospital has taught me anything it’s that gorilla legs are not sexy and that you could bump into the next Steppenhaal at any time. Now as you can probably imagine shaving your legs when they aren’t working properly is bloody hard, so I paused for a minute and thought long and hard about what would be the best way to do this. Eventually my thought process took me to lifting my leg out the bath, propping myself up with one arm and my head and using my razor in my spare hand. With great difficulty and a hell of a lot of time, I managed to get the 1st leg done (Yes, I know I should have just got them waxed but hindsight is wonderful thing). Thinking I was on a roll I decided to use the same technique on the 2nd leg which I thought went and took a bit less time, until I realised upon closer inspection that I had actually missed an area the size of a small country around my ankle. So again, I propped myself up with one arm and my head and with my razor in the other I went to shave “Congo”. However, something went wrong. What the exact cause was is still being investigate but what we do know is that I somehow slipped in the bath, causing my head to fall upon my leg, the razor to dig deep into the heart of the “Congo” rainforest and take a massive chunk of skin out my leg. It’s as if the bath is not designed to allow you to prop yourself up using your head. I am not joking when I say that the blood squirting out was like a scene from ER. I expected George Clooney to run in at any moment to stitch me up or suggest amputation. Unfortunately he didn’t.
If that wasn’t enough I then had to struggle to get out the bath with my dodgy legs and blood going everywhere; all over the bath mat, the walls, the bath, the towels and I don’t know how but also in the toilet. It was like a scene from Saw 1 or Saw 2 or 3 or 3901 but this time there was no little mean clown man that made me do it as punishment for the way I was living my life or an ability to get a key so I could escape. Most people at this point would have given up but I felt I had gone to too much effort already to pack it in without getting my tan and faking the healthy look. I then tied a towel around my ankle, put the pain to one side and with shitty legs and blood dripping through the towel and onto the floor, I continued on my missions to be tanned. Again without the use of ones legs, putting fake tan on is bloody hard but I kept my mind focused and 1 hr 20 minutes later I finally emerged from the bathroom feeling like I had just ran a marathon and looking as if I had changed ethnicity. Now not only was there blood everywhere but there is also fake tan. Just as well Demi enjoys cleaning.
After my epic beauty session I was exhausted so I took to my bed and spent the rest of the night dreaming of a world were I could fly and Lucozade was classed as a healthy drink. When I awoke in the morning to realise that it was all just a dream, disappointment took over but I thought don’t worry Sam we have a party to go to and have semi-successfully managed to look healthy. Then as I tried to move, I felt a searing pain shoot up my arm, through my neck and down my back. When I tried to put any weight on my arm to enable me to stand up, the pain grew in severity to the point were I considered calling up Mr Clooney and asking him to remove my arm this time instead of my razor slashed leg. As I have stated about a million times before, my legs are shit, which means I rely on my arms to take most of my weight and with the aide of Paul and Jane, get me from A to B. So when one of my arms causes me crippling pain any time I try to put weight on it, I am as screwed as Heather Mills would be if Sir Paul paid someone to steal her peg leg and then beat her good leg to a pulp with it. This injury may have been a product of my ingenious way of shaving my legs but I feel I may have done it in my sleep while I believed I could fly, after all I did wake up in a Superman style pose. Either way, I still had two days left before the party, plenty of time for my arm to sort itself out, or so I thought. The morning of the party came and unfortunately went as the arm was no better. This meant that whilst, anyone who was anyone, got their place in the history books at Miss Cole’s 21st, I was in my house having a few choice words with the big man upstairs. I can distinctly remember what I said, “Excuse me God, I don’t really know what your deal is here but to be honest I think you need to cut me some slack. First the M.E, then my legs and now you steal my place in the history books by buggering up my arm. You seriously better have a lottery win in store for me, and I don’t mean the UK lottery, I am talking Euro Millions here. I want to get myself one of those Islands like Richard Branson, so I am gonna need at least 16 million.”
A couple of days later my arm went back to normal. I am still waiting for my lottery win though.
Title taken from “Get the London look” by Rimmel
I have always been a terrible driver. From the day my driving instructor, Hugh Grant, handed me my pass certificate and let me go off on my own, to 6 weeks later when I crashed into the back of a car driven by a pregnant women, to the last time I stepped in a car (don’t worry the pregnant women was okay, Demi wasn’t however, as I wrote off her car). There are many reasons why I shouldn’t be allowed on the road, just some of which are; I am too easily distracted, I am not good at judging distances, I can’t reverse park (One time outside Jennifer Garner and Kevin Costner’s flat, I reversed into a lamp post), I care more about what’s on my iPod than what’s on the road and I have a need for speed. Along with my shit driving skills, I also drive incredibly shit cars, (I am no longer allowed to drive Demi’s after the incident with the pregnant women). First there was Marty, the 11 year old Ford Fiesta mentioned in the very first Blog who used to let off a banging noise when you drove him. After Marty was sent to the big scrap yard in the sky came Joni, a 6 year old green Peugeot 206, (named after the great Joni Mitchell as she wrote a song called little green about a daughter she gave up for adoption). Just like the real Joni this car was slightly temperamental. At random intervals her horn would sound for periods lasting about 10 minutes or more; to combat this, I had to shove a bit of cardboard into the steering wheel to wedge it into a position that allowed the horn to be eternally silenced. Unfortunately this also meant that my horn could not be used to warn other drivers of my presence or to beep at Hillary Duff when she drove past in her Daewoo. For some reason, people were always fascinated by this structure upon entering my car, which I preferred to call modern art. She also had issues starting, firstly to do with her battery and once that was fixed, her starter motor stopped working. Meaning, on more than one occasion, my friends or randoms on the street, were called upon to give her a push and get her going again. Oh and her exhaust fell off, TWICE! This is why I should get to go on Top Gear and get a shot in the reasonably priced car, as Jeremy Clarkson would love to hear this story. In conclusion, me and anything that has wheels on it does not go.
When you can only walk to the bottom of your (not so long) street and back, it kind of limits what you can do and where you can go. To enable me to get out and about more, Demi spoke to the legendary House and got me a wheelchair to use. When you used to be fit, healthy and able to walk, having to get pushed about in a wheelchair is soul destroying. It also made me regret every time I ever said, on passing a child in a buggy, “Oh I really wish some one would push me about”. Well Sam in the words of Gabriel, “Dreams can come true” but perhaps you should have been careful what you wished for. But if it meant I could leave my street I and get out and see what the world had to offer outside Moodiesburn, then I was just going to have to suck it up.
My first adventure with the chair came when Demi and Posh decided to take a trip to Livingston Designer Outlet to see if Demi could find an outfit for Posh and Jack’s nuptials which were a decade away. We all piled into Demi’s tiny Yaris, me in the front, Demi driving and Posh squashed in the back, up against the wheelchair. Good thing Demi was driving, if it had of been me, we would have been likely to crash and Posh would have succumbed to death by mobility aid. After reaching our destination and releasing Posh from her wheelchair cell, we were ready to hit the shops. Before I go on with this story, there is something I should tell you about Livingston, its right next to Bathgate, the hometown of thee one and only Miss Susan Boyle. Susan is also a regular at the Livingston shopping centre. I know this because my friend Zooey Deschannel used to work in a department store there and regularly told me stories of her visits. Including one where Miss Boyle burped in a staff members face. So I was tres excited at the prospect of perhaps seeing my hospital hair twin.
One thing you should all know about Demi is that she is extremely impatient. So having a wheelchair slowing down her normal sprinting walking pace is not ideal. To combat this, her solution was to abandon me and the chair whether it be outside shops, in the middle of walk ways, even in the Marks and Spencers sale and continue shopping. While I struggled to pull myself about using the fixtures and fittings, Demi would be off trying on shoes and rummaging through rails of reduced clothes. But as I already told you, my driving skills are at best, questionable. This lead to me crashing into many displays, pulling down many fixtures and almost taking a few people out. Luckily for me I had Posh. Every time Demi tried to lose me in some obscure corner of a shop, Posh would hear the crashing of clothes rails I had just knocked over, and come to my rescue. After about an hour of this, it was decided that it was probably best if Demi refrained from her pushing duties and Posh took over permanently.
Another thing people don’t tell you about being a wheelchair user is that you can’t see shit. I am 5ft 10 and have been since I was about 14, which means I have been used to seeing over everything and everyone. So when you go from that to sitting in a chair unable to see over anything, your day consists of your view being blocked by one fat ass after another. You just need to watch those asses don’t get too close. The last thing you want is a fat ass on your face. I have a friend, Kylie who is probably the smallest person I know. She is so small someone once asked her if she was a dwarf (she isn’t for the record). I once asked Kylie her height and she told me she was 5ft exactly but to be honest with you all I think she is more around the 4ft 11 mark and just tells people she is 5ft to make herself feel better. As I was being pushed around the shops all I could think was, “Bloody hell this must be all that Kylie sees day after day, one obese ass after another” and for a moment I considered buying her a pair of stilts so she was able to see what it was like to be a giant like me. Unfortunately my bank balance said no.
Hours past and with it came no sign of my hair twin Susan. I had admitted defeat in my search for her as we readied ourselves to head back to “MBurn Agro Yas Ya Bas” but in usual Demi style, she wanted to stop at one more shop before our journey home. Just as Demi walked into yet another shoe shop, my eyes were drawn to the Millie’s Cookie/ Ice Cream stand that protruded out of the shopping centres wall and there, in a Brown Biker Jacket, a pair of caramel Chino’s with wild wind swept hair, was the women I had been looking for all day, buying a double scope chocolate chip ice cream cone. The excitement took over my body, I was shaking and starting to hyperventilate, it was at this point that Posh realised who I had spotted and drew to a halt (Please note this excitement may be slightly over exaggerated). For a moment there was silence as we tried to take in this epic sight in front of us. Then Posh had an idea! “Sam I think we should wheel on up to her and ask her to sing you a tune to see if it will make you walk again” but I had already thought of something better. Not long before this sighting, Susan Boyle took part in Comic Relief along side Peter Kay’s alter ego Geraldine. Together they recreated the Elaine Page and Barbra Dickenson classic “I know him so well” from the hit musical Chess. So I thought to myself, why don’t Posh and I perform this number for her. For the next 3 minutes, Posh pushed me up and down the walk way, past Millies’s with my arms stretched wide as we both sang “Wasn’t it good? Oh so good! Wasn’t he fine? Oh so Fine. Isn’t it madness he can’t be mine?” Unfortunately our efforts were lost on Susan as she walked on oblivious to our out of this world rendition of a musical classic.
The next day Posh read an article in the paper about Miss Boyle and how she had given up Sweets and Chocolate. Hate to tell you Susan but you are doing a crap job of it with your double scope mint CHOCOLATE CHIP ice cream.
Title taken from the song “I dreamed a dream” from “Les Miserables”
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Road Trip, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes, Susan Boyle
In 2005 Jennifer Garner and I made what possibly could be classed as the biggest decision of our lives. Bigger than any marriage proposal or deciding to bring another life into this world, bigger even than choosing who your celebrity granddad would be (For the record, Jennifer’s is Martin Sheen. Whilst I would also like to have Jed Bartlet as the head of my family, Jen got there first, so I have to go with Robin Williams). So what is this important decision? What our theme tune to life would be? The song that you hear when you walk down the street, the song that is in the background of every dream, the song that gets you through both the good and bad times, the song that if someone ever decided to make a film about your life, would be played at some pivotal moment. Like when you realised that you wanted to become a Go Go dancer or that you were in love with your postman all along or after you got arrested for peeing in a public fountain in front 400 other people. After much deliberation we both finally settled on our ideal tune. Jennifer’s was “Shout”, the Isley Brothers version not Lulu’s. My own, “Don’t Get Me Wrong” by The Pretenders. Ever since this moment, I have had to have a soundtrack for everything, road trips (as you have already heard about), holidays, nights out, I have even made up a soundtrack for my own funeral. Some may think this is particularly morbid but I did not pull together such an awesome collection of music because I think I may die soon. Rather, I decided to put it together just in case something unexpected did happen as if it was left up to Demi, I would be lowered into my grave to either something by “The Boob” (aka Michael Bubble) or to her favourite housework song “What you waiting for” by Gwen Stefani. So far I have 60 songs on my funeral playlist so it should only last a couple of hours.
Everyday, come rain or shine, I go through the same routine of sticking on my converse, putting the hood up on whatever hoodie I have chosen to wear that day, putting on my biker jacket, fitting my iPhone into my jean pocket after turning on the iPod, sticking my headphones in my ears and the final and most important stage in this process, putting on my sunglasses. I don’t go through this process on a daily basis to just sit in my living room looking like some kind of rock star wannabe waiting to be discovered; I do it to prepare myself for my daily walk.
A few weeks after leaving hospital and following Louis Walsh’s (The Physio) instruction of doing the leg exercises everyday, I was ready to attempt my first walk outside. I knew that by not working my legs and building up there stamina and strength would lead to only one thing; they would get worse. On the other hand, pushing them too hard could lead me to relapse to an even worse state. So I had to find a happy middle ground. To do this I started off with what I thought I could manage. With the help of Paul and Jane, I walked a couple of metres out the house and back. I continued this everyday until the next week when I felt comfortable enough to up the distance by the length of a garden (I live in Moodiesburn, not Beverly Hills, so the length of most gardens here are about two metres not two miles). Every week since then I have continued to do the same. Between this and the hydro therapy (hydrotherapy) I have noticed more movement, strength and stamina in each of my legs and as long as I don’t have a “Winona” moment (This is code for crazy) and try and up what I am doing by ten gardens instead of one, I will not relapse. Yes, it’s a slow and boring process but if it enables me to walk a reasonable distance without Paul and Jane and not just down the street and back, then it will be worth it.
That’s the boring stuff out of the way, now onto the important things. As I said before I make up a soundtrack to everything. So my walk is no different. I needed songs that had a positive message, would keep me going or that I just generally loved. Below is my walking playlist:
1) Tomorrow – James
2) Don’t Stop Thinking About Tomorrow – Fleetwood Mac
3) El Capitan – Idlewild
4) Times Like These – Foo Fighters
5) Born to Run – Bruce Springsteen
6) Move Along – The All American Rejects
7) You and Me – Dave Matthews Band
8) The Middle – Jimmy Eats World
9) Save Me – Remy Zero
10) Lifeline – Angels and Airwaves
11) Johnny B Goode – Chuck Berry
I don’t really need anymore than eleven at the moment as I cannot walk that far yet but one day its going to be bigger than my funeral playlist!
The next important factor of my walk that perhaps needs to be explained is, why do I wear sunglasses all the time when I live somewhere that rains 99% of the time? Because ladies and gentleman, not only does it rain a lot here but it also gets hell of a windy. On one particular windy and rainy day, I went through my ritual (this was before I realised my need for sunglasses). I stepped outside the door and started strutting my stuff down the street, thinking to myself “how cool am I, even with these sticks”. Half way through my daily jaunt, a sudden gust of wind came out of nowhere. My first instinct was to protect my legs and try and not get knocked off my feet. So I grabbed Paul and Jane and with everything I had, dug them into the ground and held on for dear life. Unfortunately that meant that I could not protect any other part of my body and with it the wind brought lots of little particles of dirt which flew into my left eye. Out went my cool jaunt and it was replaced by a crazy stumbling fool who for some reason unknown to passers by kept winking. After finally managing to get home partially sighted, I promised myself I’d never leave the house again without protecting my eyes with my sunglasses, no matter the weather. I was asked once by a woman in the street why I was wearing my sunnies when there was no sun, to which I replied, “To hide my identity. I am actually on a really popular kids TV show and I don’t want them to see me like this as they all love me so much it could traumatise them”. HA HA SUCKER!
Do you have a theme tune to life? Why not tell us about it?
Title taken from “Don’t Get Me Wrong” by The Pretenders.
This is a post I wrote for Truth About Youth Scotland’s Blog The Patter. It was also published in one of their Sunday Mail supplements. To Read more posts by Young Scots wanting to change the negative perceptions of youth check out www.thepatter.org
Most people, if not all, have a perfect age. A year of their life that they have already lived through but it enjoyed it so much that if they had the option they would revert back to this point in time and never get older from then on. My perfect age would be 17. As this is when I went to University, discovered partying, had the world at my feet, let go of all my teenage insecurities and embraced life and all it had to offer with both hands, feet, ears, eyes, arms, legs and anything else of which I have two of. Some people, who in my opinion must have several screws loose, choose an age in their thirties. The excuse given for this is usually, “this is when I became wise and comfortable with myself”. What they usually fail to mention however is that with this comes cynicism, disillusionment, regret and the need to always say “the youth of today…” followed by some uppity, untrue comment about how unruly “kids” of today are, when they know perfectly well that apart from the fashion, hairstyles and the iPhone nothing about the youth culture of today is so extreme as to warrant that comment.
For some reason most people pick the age of 21. Why? Well that is a question I have no answer for as firstly, 21 is the age where hangovers become a reality. Before the age of 21 I could drink all night and all I would have to do is spew up my guts and I’d be ready to start the day and the partying cycle yet again – not that I recommend this of course. After I reached this milestone, hangovers lasted days instead of minutes. 21 is also the age in which you have to become, or at least pretend to become, a “proper adult”. A new term that has been coined by psychologists who tend to have too much time on their hands is “Quarter Life Crisis”. This tends to happen in the early twenties when one leaves University, goes out into the real world and then realises that throughout all those years in the education system, adults did nothing but lie to them about how by going to University you are guaranteed a job. This causes some young adults to become so disappointed that they have a nervous breakdown, yet another reason as to why 21 is the proverbial equivalent of a swift kick in the…somewhere that hurts. But for me the age of 21 sucked for yet another reason. As 5 months before my 21st Birthday, for which I dressed up as an 80’s punk by fashioning a dress out of a black bin bag, I caught a virus. And from the ages of 21 to 24, which I am now at, my health went down hill, through the earths crust, mantle, outer core and core until it reached the gates of hell where it paused for a moment before continuing on its journey to the deepest darkest depths of Satan’s hometown, all because that one virus left behind a little known condition by the name of Myalgic Encephalomyelitis (M.E) also known as Chronic Fatigue Syndrome.
For those of you who know nothing about this condition let me give you a brief overview. M.E is classified by The World Health Organisation (WHO) as a disease of the nervous system – I put this sentence in as during the 1980’s M.E received bad press which included that it was a made up disease for lazy people despite evidence to the contrary. Why? Most probably because a hell of a lot of papers back then were run by Rupert Murdoch and if we have learned anything in the past few months it’s that Murdoch is not the nicest or most moral man on the plant. Unfortunately this stigma – much like the stigma that all young people are disconnected yobs who organise riots on Facebook – is not only extremely inaccurate but also hard to kill. M.E’s main symptoms tend to be extreme fatigue, a general feeling of malaise, muscle aches and weakness along with cognitive dysfunction. This is how the medical profession describe it, I tend to prefer my own description; imagine the worst case of Flu you have ever had, you lay in your bed too ill to move, too weak to even lift your head from the pillow to eat and your body aching so badly that you never thought you would feel well again. Now multiply this by 100 and your half way to feeling how an M.E sufferer feels on a regular basis. Some people get over this chronic illness in a couple of years, other it takes longer and some never recover. It also affects people regardless of age, sex, race or social status. In conclusion it’s like the Katie Price of diseases, everyone hates it but for some reason it just won’t go away.
Lazy, crazy and a hypochondriac are just three inappropriate and false words that were used to describe me before I was finally diagnosed with this illness at the age of 22 (coincidently these are also words that are used on a regular basis to describe peoples perceptions of the young people today). So, what happens when not only do you face prejudice on a daily basis for being young but also because you have a chronic health condition? After all M.E is a disease that is affecting more and more young people across the UK. We are regularly told by books, films and TV that these are meant to be the best years of our lives yet many are trapped by their own bodies too sick to do anything and without any help from the authorities that are set up to help and protect them. This can lead to anger, sadness and the feeling of wanting to give up on everything. When I feel like this I go back to my perfect age. Not the drinking, partying and the need to go out and spend my entire student loan on DVD’s and CD’s, but to the positive feeling I had about everything and how I embraced life, when I looked at the world like nothing could stop me and barriers were looked up on as challenges to make the journey more fun and so we would have more appreciation for the final destination. Many teenagers who have M.E are unable to do this as this illness has stolen what could have potentially been their perfect age. But what we all have to remember is that as teenagers and young adults we have something that is lost by every extra candle added to our cake. Our hopes and dreams about the future. It just so happens that my future, just like many who suffer from M.E, is a bit further away than normal. We just have to hold onto the ideologies of youth to pull us through until our M.E free future becomes a reality.
To read more about my life with M.E check out my honest and light hearted Blog at www.samandme.org
Title taken from “Glory Days” by Bruce Springsteen.
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E Blog, Sam and ME Blog, Sam McInnes, Samantha McInnes, TAY, TAY Scotland, Truth About Youth, Truth About Youth Scotland
What some people don’t realise is that with M.E, a relapse can be brought on by the smallest of things. At the end of June 2011, my relapse was brought on by Cyndi Lauper and a trip Wagamama’s.
I have loved Wagamama’s ever since the first time Jennifer Anniston took Jennifer Garner and me there when we were 17. I had a Katsu Curry and fell in love with the Japanese noodle bar and ever since then it has become our favourite place to eat. So when Jen Garner and I had tickets to go and see Cyndi Lauper at the Royal Concert Hall, I thought why not start off our date by filling up on Ramen and Chicken Chilli Men. When Jennifer came to meet me at the Royal Concert Hall she asked a question that I probably should have said yes to, “Will we get a Taxi to Waga’s?” But foolishly I said no. Why? Because in Glasgow not all black cab drivers are polite and willing to help, I didn’t want to get in a taxi and have to listen to the taxi driver moan about taking us 300 metres down the street and then charge us a small fortune for it. So instead I insisted that we walk. I hobbled down the street with Jen there to catch me if I fell and after what felt like a decade we finally reached our food heaven destination. By this point I wasn’t feeling so bad, so when we had filled our stomachs and I was faced with the options of walking or taking a taxi, again I made the totally wrong decision. But hey, we learn from our mistakes don’t we?
After another jaunt we finally reached the Concert Hall and went in and took our seats. Once seated and finally giving my legs a rest, a strange man seated in front came to the attention of Jen and me. I don’t know if it was the fact he sat reading articles about Cyndi in various magazines, or that once he finished reading them, he then took out his digital camera to reveal pictures of himself at Cyndi Lauper concerts throughout the UK, or the fact the he had tickets for two seats but was alone, or his choice of Kappa track suit. Either way we both became slightly concerned for C’s well being. After all John Lennon was killed by a crazy fan, it wasn’t so hard to think that this guy could be Cyndi’s very own Mark Chapman? Concerned for the women’s safety Jen and I came up with a plan. When this man eventually made his move we would lift up one of my sticks each and strike him hard on the back of his head causing him to drop his knife, gun, grenade or whatever weapon he happened to have hidden underneath that navy kappa track suit. After he fell to the ground Jen and I would then perform a citizen’s arrest and keep him in our custody until the authorities came and took his ass to jail. Cyndi would have been so impressed and thankful for our efforts she would then allow us to do the dance from “Romy and Michelles’s High School Reunion” on stage while she sang “Time After Time”, as we did see Mark Chapman’s “True Colours”. It turns out that Mark may not have actually wanted to kill Cyndi. Marry, kidnap or perhaps touch inappropriately, but not kill. So Jen and my services were not needed that night and we were left to enjoy the show.
The next day M.E struck, and it struck hard. The headaches, more severe muscle aches and severe tiredness all severed as a reminder to me that I am sick and no matter how positive a person you are, to wish things to get better just doesn’t work. You have to listen to your body and when it says “yes I am hungry and would love a Wagamamas but I don’t think I can walk all that way” then you don’t walk. You have to work with it instead of working against it. I can’t lie to you and say as soon as I woke up and realised that I wouldn’t be leaving my bed for the next few days that I wasn’t disappointed. In fact disappointment isn’t a strong enough word. I felt like I had taken all the money and every possession my family had, put it all on black and the ball landed on red, leaving me with nothing and having to face the prospect of going home and telling my whole family that we were now going to be living in a card board box. But I had two options; I could wallow in self pity about having this shit illness that stopped me from walking and causes me to spend days in my bed sick or I could do something about it. I chose the latter. I decided to make myself up an activity guide. A point system that would allow me to know when I was doing too much by giving everything I do a certain number of points and having a maximum number of points I would use per day. Every two weeks the number of points I was allowed to use would increase by 1 allowing me to build up what my body could do slowly over time. I then put all this in an email and emailed it to every one of my close friends and family. I wanted them to understand what I could and couldn’t do and give them a better understanding of what it was like to live with this illness, as if I didn’t tell them, how would they ever know? This is what I wrote:
Hope you are all doing grand!
You are probably wondering why I am sending you this random email. Well folks after Jenifer forced me at knife point to walk to Wagamamas the other night, I haven’t really been at my best. Which is code for I feel worse than shit. So I decided to write up an activity guide that would allow me to plan better what I can and can’t do. I have attached this at the bottom of this email to help you all understand why I regularly say I am too tired to do things.
Sam’s Activity Guide
Working on computer for up to 30mins
Reading for up to 30mins
Conversation only for up to 1hr
Watching a mentally taxing film at home (i.e. one you have to concentrate on)
Anything over 20 and up to 40mins in a car (after 40mins increases by 1 point every 20mins)
Preparing a meal taking no longer than 20mins
Cinema or show trip not including travel
Lunching/Dining out not including travel
One way bus journey
Any other outing that lasting 4hours or more
Other points added:
2points added if an activity passes the time 9:30pm
5 points automatically added for disrupted nights sleep
5 points automatically added for a highly emotional or stressful situation
Maximum point usage per day to start with: 10
Title taken from “The Long Walk Home”.
Tags: Chronic Fatigue Syndrome, Cyndi Lauper, Jennifer Garner, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes, Wagamamas
Please enjoy the first ever Sam and M.E VBlog!
Thanks to the amazing Tony Downs at Black Circle films. Check out more of his work at http://www.blackcirclefilms.com
Tags: Black Circle Films, Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam and M.E, Sam and ME Blog, Sam McInnes, Samantha McInnes, Tony Downs
On the 28th of August 2011 my dear friend, confidante and one part of the SSM club left the rain covered streets of Moodiesburn to start a new life in a place where the sun doesn’t stop shining and where one can pick up many delightful knock off designer bags; Dubai. I have been friends Faith since primary school and even at a young age she was always the intelligent one. Unlike most children who find out that Santa isn’t real from their parents who can’t be bothered keeping up the facade anymore or a kid at school who is showing the first signs of becoming a sociopath, Faith at the age of five sat in her room and worked out that it was virtually impossible for a man with a sleigh and reindeers to deliver presents to every good boy and girl across the globe in one night. Now if this was my child I would have taken her to see some kind of specialist as this isn’t normal but Faith’s parents thought nothing of it and encourage the development of her rationality and intellect. At the age of 7 Faith, Courtney Love and I started our very own club in my wooden play hut in the back garden, the SSM club (named after our actual initials). Faith seeing an opportunity to turn our club into an organisation that could take over the world, (doing what I am not sure) decided we needed a corporate structure. As I owned the hut I was allowed to be the Boss, Faith appointed herself Manager and Courtney was left to be the employee. Which really meant the Faith and I would sit on our ass while we watched Courtney sweep the floor. It sounds cruel, yes but the hut was tiny so it didn’t take her that long to clean it. What I failed to realise is that Faith was teaching me my very first lesson in how to succeed in business; be ruthless. At 13 Faith demonstrated to Hilary and me how a tampon works with the use of a glass of water, I found this particularly useful as going to a Catholic school we never learned anything like that. All we were told is that men have bits, girls have bits if you put them together before marriage you will get a STD and die! A couple of years later Faith followed on our puberty lesson by teaching us about reproduction and then followed that by showing me how to play “Nothing Ever Happens” by Del Amitri. To this day as soon as I hear the lyrics, “Post office clerks put up signs saying position filled”, I am transported back to the make shift music studio her dad put together in their spare room. Faith was a straight A student whose intellect, thirst for knowledge, rationality and will to succeed at what ever she did, could have taken over the world but although she may have been ruthless while “managing” the SSM club she quickly grew out of that. Instead she decided to use her talents to inspire the next generation of adults. Just like she taught me many things through out our friendship, Faith decided to become a teacher and for this I will always admire her. As unlike most teachers I know, she never entered into this career as she couldn’t think of anything else to do with her degree, she became a teacher because she wanted to make a difference. This career option was the main reason Faith moved to Dubai. As a young adult I would have described Faith by a term her sister coined, “Patio Person”. This is someone who grows up in a small town like ours, marries their childhood sweet heart, buys a house with a patio around the corner from their parent’s house has some kids and that is basically their life until they die. However with the recession and the cut backs in the education system Faith never got to make her “Patio Person” dream become a reality as their were no jobs for newly qualified teachers, instead she had to move country to do something that she loves. I feel Faith and her fiancé Adam Levine are glad this happened as from their constant Facebook updates it seems like they are constantly going for brunch and having the time of their lives and . Anyway this Blog isn’t called Sam and Faith Evans, its called Sam and M.E so let’s get back to my story.
As Faith and Adam were leaving to start a new life in Dubai it made sense that had a proper send of. As they were also recently engaged they decided to put these two events together and have a “Leavegagement” party. Courtney invited me around to her flat before hand so I could prepare my “Fake Healthy Look”. This seemed like a sensible thing to do as she lived closer to the venue. When I got there I started to feel Darth Vader creeping over me, he was trying to gain control of over my body causing me to feel well shit. What I have learned from suffering from this illness for a while now is that when this happens I need to rest and do nothing for at least a couple of hours because if I don’t I end up ten times worse. But this time I wasn’t having any of it. No way was M.E getting in the way of one of my best and oldest friends leavegagment party when she was going to Dubai and god knows when the next time I would see her again. So I made a decision, not a very bright one, but one that would get me through the night. I was going to Red Bull it! Now there is a reason why people who suffer from M.E are told to stay away from energy drinks; the sugar briefly increases your energy levels so you are able to stay awake but once the taurine and sugar wears off your energy levels drop drastically causing you to feel 10 times worse than you did when you first drank the red bull. I felt this come down was worth it to see faith off, so I drank a whole can and readied myself for the night ahead.
Once there Courtney, I took our seats and waited for Hilary Duff to come. As per usual Hilary and her boyfriend Robert Pattinson turned up late. No matter what we have planned Hilary has not once been on time. Sometimes we tell her we are meeting half an hour before we are actually meeting to try and get her there in time and she is still late! Courtney still has not came to terms with probably one of the only flaws Hillary has but the rest of us all knew better and expect nothing more of her. Once we were all seated the drinks started flowing. These days I don’t drink. There is two reasons for this, firstly I already feel like shit most of time the last thing I need is a hang over on top of that. Secondly, not a good idea to get legless when you walk with a walking stick and considering my history of one tequila, two tequila, fall down it’s just not a good idea. I mean don’t get me wrong I am not going to be one of these sober people who judges anyone that steps within a 100 yard radius of a vodka bottle, I will drink again but I will have to be feeling 100 times better before I’m “back on it” as the people of Glasgow say. While everyone was ordering vodka, wine and many shots, I was faced with the option of what to get. I usually just drink water (a cheap date is what Courtney calls me) but the tiredness has started to get to me again and after much deliberation I decided to go for another Red Bull. Yes I know I shouldn’t have done it and I knew I was going to pay for it but I was already having to turn up to this party walking with a stick unable to dance, no way was I going home early to sleep, M.E wasn’t ruining this night. And it did keep me alert and got me through the evening without anything going wrong.
The party was awesome, even if I did only experience it from my table and the odd trip to the bathroom but it was defiantly a well deserved send off for two of my favourite people. By the end of it Hilary had opened the flood gates and to this day they haven’t shut. She goes through at least 3 boxes of hankies a day but don’t worry we are referring her to a specialist. I expected nothing less than the party of the year from Faith’s family as they are known locally as the Mafia- well what really happened is that someone set up a fake Wikipedia for our town, Courtney posted on it about how it was full of inbreeds and because there is so many “Evans” I came up with a story about how they “ran town” and were our own Corleone family punishing those who didn’t pay there “taxes” by attaching them to thousands of helium balloons and watching them fly off. It seems to have caught on- And we all know that there ain’t no party like a Mafioso party. After any of the Evans’ Mafia parties there are always an after party hosted at one of the many relatives houses. Unfortunately for me Midnight was already way past my bed time and I was knackered, so it was time for me to depart and go to bed. Was I gutted I couldn’t continue the celebrations like everyone else? Yes of course I was but if I went all I was going to do was sit in a corner exhausted and then wipe out any other chance I had of seeing Faith and being awake before she flew out the following week.
Once home and in bed the come down really kicked in. I felt like I had been on some kind of drink and drug binge for the past week, the room was spinning, my body was shivering because I was so cold which made my muscles ache more than usual, I felt like I was about spew up everywhere and although I was exhausted my ability to sleep was interrupted by the symptoms of my sugar come down. After an hour of this I actually thought to myself, no wonder heroin addicts find it so hard to get clean. If this is what I was like after two red bulls imagine what you would be like after 10 years of injecting Junk into your veins. I had a new found respect for those who managed to get clean. I realised at this point that becoming a drug addict was not going to be in my future along with Red Bull or any other energy drinks for that matter. After two hours of de-toxing I finally managed to get some sleep and was briefly relieved of the torment my body was going through.
However this was short lived as pretty soon it was going to be morning, I was going to have to get up and have to face the consequences of my Red Bull drinking and ignoring Darth…
Title taken from the song “I’ll be missing you” originally by Sting
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
For my 18th Birthday Jen Aniston and Sandra Bullock decided the best gift to give me would be to scar me for life. They took me to a tattooist that only a few weeks previous, had scarred Sandy with the Chinese symbol for hope, or whore, we are not really sure which one. Either way I am sure it made a statement on her travels to China. I however, decided to opt out of foreign symbols that would make me a laughing stock at the local take away and decided to embrace my inner Emo and get a single star tattooed just below my wrist. After about two years this single star tattoo craze as taken to new levels and before I knew it, half of the girls in Glasgow had a single star tattooed on their wrist. Unwilling to have the same body art as the wannabe cast of The Only Way is Glasgow, I returned to the tattooist. This time I opted to get one main star, followed by many small ones. Why? Because I was young, stupid and had no idea what else to get. Another year past before I realised that not only was this the worst idea for a tattoo since Sandra got whore tattooed on her back, but it was also done by a man who had no idea what stars actually looked like. No way was I spending the rest of my life looking like a rejected member of Avril Lavigne’s entourage. It had to go and in its place I got a dead tree. Many people over the years have asked me why I decided to get a dead tree going from my wrist up my arm, covering the mangled stars. My favourite answer to give is this: “Its like, to remind me that trees die and people die and like everything dies, one day even the earth will die, probably from the sun dying out and then turning into a black hole, sucking the earth in and squashing it to the size of a pee”. Is this the truth? Is it F***! I just like to see the reaction on people’s faces when I tell them this disingenuous and ridiculous story. So what is the reason for the dead tree on my arm? Well let me tell you.
After I decided that mangled stars where no longer my friends, I had to set about coming up with something unique, original and me. I spent hours researching possible options for my new tattoo; I wanted something I would not end up hating and wanting to chop my arm off to get rid of. After two months of Google searches and going through many tattoo books in Waterstones’; where I would sit in their coffee shop trying not to spill my latte on them so I wouldn’t have to pay for the book, I was still no closer to finding my perfect piece of artwork for my arm. One Saturday evening when I didn’t have enough money to go out and poison my system with alcohol, I was sitting in, watching some programme where a bunch of musicians came on and cover other musicians songs, talk out their arses about what that particular song means to them and where everyone in the audience look as if they have been given Valium on the way in. At the very end of what I can only imagine was a desperate attempt to steal viewers away from that night’s Match of the Day, The Magic Numbers came on and covered Dolly Parton and Kenny Rodgers, Islands in the Stream. As soon as they got to the chorus and started singing “Islands in the stream that is what you are. No one in-between, how can we be wrong” I had it! My next tattoo would be a flowing stream with the sun rising behind mountains in the back ground and a single dead tree hanging over the water. Over the course of the next few weeks, I realised that my wrist actually wasn’t big enough for this elaborate piece of artwork I had envisioned, so the sun rising behind the mountains had to go and then after another few weeks I had to also let go of the stream, all I was left with was a dead tree. Many people may laugh when they find out my tattoo was inspired by a Dolly Parton song but Dolly is awesome. Her look is inspired from the town prostitute and she isn’t ashamed to admit it, she started the imagination library, where kids under five get free books in her home state of Tennessee due to the high rates of illiteracy and its now active across the USA, Canada and UK. She also built Dollywood in the Smokey Mountains where her family lived, due to the high rates of unemployment there. She is an inspiration to us all and that is why I am proud to have my Dolly tree and also why on the day after Faith’s leaving night I had to go see her in concert.
The morning after Faith and Adam’s leaving night I woke up to what Courtney now calls my “juice hangover”. I call it living with M.E, but each to their own. Exhaustion, muscle aches and an extremely sore head were just a few of the symptoms that made up my juice hangover. I had no choice but to give into it and not leave my bed until 7pm came and it was time to go and say “Hello Dolly”. The last time I had planned two evenings out in a row, I was fit healthy and had money to squander on copious amounts of Alcohol, so needless to say a while ago. However when Faith and Adam organised their engagement party for the night before Dolly came to Glasgow I couldn’t just phone up Ms Parton and say “Hi Dolly, hows life? I know your doing this big world tour at the moment and are incredibly busy, but the date you have put down for Glasgow really isn’t suitable for me, so do you mind making it the week after?” I couldn’t do this for two reasons, firstly because I don’t have Dolly’s number, which is probably best for her, as I would harass her on a daily basis to become my adopted Aunt and let me come live with her in Tennessee, where I would force her to sing “Travelin’ Through” to me every night before I went to bed. Secondly, if I did happen to have her number and phoned and asked her this, she would likely to tell me where to go.
I didn’t move all day, I never even blinked just in case it used up the smallest amount of energy that I would later need to sing along to “Jolene”. But by 7pm the juice hangover, unlike everyone else’s normal hangover, had not subsided. I had two choices; give in and not get to see the Legend that is Dolly, or be influenced by a song on Dolly’s new album “The Sacrifice” and sacrifice all my energy for the next week and go and see the amazing Dolly Parton. I chose the latter; no way was I missing this concert. I got myself ready and very shakily walked into the concert hall, nothing was stopping me, and even if Courtney had to carry me, as long as I got there, I was happy. As soon as Dolly came out in her pink tasselled rhinestone outfit I knew I had made the right choice. Courtney even got me an ice cream cone on the break. Was I ill for the next week? Yes, but by the next Sunday, I had started to feel slightly better and was able to go and see off Faith at the airport. I even made a banner.
Now as an M.E sufferer, I know how important it is to pace yourself, doing too much; like going to an engagement party filling up on Red Bull, followed by going to see the wonderful Dolly, however great it may seem at the time, is not recommended. However, I would have been gutted if I missed out on either of these events due to M.E but this was a once off and I do not plan on repeating this again. Well unless Joni Mitchell decides to tour again and comes to Glasgow the day after Posh’s wedding.
Title taken from the song “the sacrifice” by Dolly Parton
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
I once went to the doctor and said these exact words, “I am willing to try anything to get better. If you tell me I have to strip naked and run around the streets of Glasgow, I am there!” Fortunately for the sighted people of Glasgow City Centre, this was not a treatment House recommended. Instead he said why not give Homeopathy a try?
Homeopathic medicine is a root many M.E sufferers go down when conventional medicine fails them. Before House even suggested this I went to see a private Homeopathic doctor (or Witch doctor as I preferred to call him). This witch doctor specialised in diet and how what you put in your body effects how your body works. The first time I went to see him I have to say it was a rather positive experience. He explained viruses, M.E and how they affect your body in a way any 21st century girl would understand; through war terminology. “Now Samantha, imagine your body is an American armoured truck patrolling the streets of Baghdad guarding inside ten men. As you continue to make your way through the derbies of the streets bombed by the air patrol the previous night, you fail to see a man run out into your path. This is no ordinary man; this man is a terrorist, a suicide bomber and is ready to detonate the bomb strapped to his chest at any moment. And just as you notice him, he presses the big read button. BANG! Your truck is thrown into the air and with it the ten men inside. The Officer of the patrol thinks there is no possible way all his men survived this attack but he would be wrong, most only had a few cuts and bruises. Once everyone comes around he discovered that the truck still runs but what he didn’t know is that there is extensive damage to the engine and although it may get the team back to the barracks, it will be never be the same again. That suicide bomber was a virus and the broken truck is now your body with M.E.” And yes ladies and gents I totally understood what this man was saying. I don’t know if that fact makes me just as crazy as the Witch Doctor or not, but either way I continued to go back to this man for about 4 months, but as I said before he focused on diet and I had already changed a lot of what goes into my body, making sure I eat only fresh food with nothing artificial at all, well apart from the odd chocolate bar I have now and then. So after 4 months and a hell of a lot of money with no results I stopped going and now whenever I watch BBC news and see any stories about Iraq all I can think of is the Witch Doctor and my very own armoured truck.
As I had already had this experience with a homeopathic doctor when House suggested going and seeing an NHS one I was slightly apprehensive, but as I had said I was willing to run about naked to get better and he explained that this Doctor was about more than just diet, so I thought, why not give it a bash.
My first appointment with this particular doctor was in January 2011, at a health centre I had never been to before. Once I arrived, I quickly realised why, as this health centre seemed to specialise in treating Junkies and alcoholics. I think it may be more probable that the area that the centre was in had a high percentage of alcohol and drug abusers and because of this it had no choice but to specialise in it, but hey that’s Glasgow for you folks, along with being Europe’s friendliest city it’s also a junkie’s paradise. I swear that apart from that it is awesome, I mean we have…like buildings and stuff? Oh and Soaves ice cream! Anyway back to the point in hand. After waiting among some seriously questionable people I was finally called in to meet for the first time, Dr Karl Brandt (yup that’s right I have named him after a Nazi war criminal). My first appointment with him was odd to say the least. When I first entered the room there was period of ten minutes where Dr Brandt never said a word and I just sat there uncomfortably. When he did finally speak, I felt like I had entered some kind of crap movie about Psychiatry were the doctor just continuously asks “And how does that make you feel?” No matter whether you had told him that you had just emptied your bowel in their ill kept public toilet, that you thought aliens were about to invade earth or that you where having chicken Kiev’s for dinner tonight, each question was then followed by a ten minute period of silence whilst he looked through a mountain of books in front of him, before returning to his previous line of questioning. I thought I had an appointment for a homeopathic doctor not a shrink! It made me long for the days of the Witch doctor and his war banter. The last question he asked was not “So how do you feel about this appointment” which I was gutted about as trust me, I had a few choice words to say about that. In fact it was “How do you like your eggs?” My Eggs? What the hell has that got to do with anything? If I like them fried, does that mean that there was a likely hood that I might one day decide to become a man and get a penis moulded from the skin on my stomach? Let’s face it, it’s not like I would have to change my name. But as I had already sat through almost an hour of this I decided to just answer the question, “I like them mashed up in a cup with a little bit of butter”. From the look on Dr Brandt’s face, I imagine he had never actually had that answer before. He then continued to look through some more books for another 10 minutes before finally writing me a prescription for something called Picric Acid, with the instructions of placing it under my tongue for 30 minutes once a day for three days and during those three days not brushing my teeth as the mint in the toothpaste can sometimes react with whatever the hell it was that this guy had given me. Had this man never heard of tooth decay? There was no way on earth that I was going three days without brushing my teeth, that’s disgusting. If I go 12 hours without brushing my teeth I feel revolting, never mind three days. I was willing to risk this odd reaction that could take place and I have to say apart from the fact that my tongue now glows in the dark, everything was fine. I took my prescription, followed his instructions and was told to return in a couple of months.
When I returned in May it was four months after leaving the hospital and I was walking very poorly with the use of two sticks. When I entered the room yet again there was a ten minute period of silence while Dr Brandt looked through one of his many books that I imagine were on the subject of how to cook the perfect egg. This was then followed by his first and only question, “So Miss McInnes, are you feeling better since the last time I saw you?” to which I replied, “Well considering the last time I saw you I walked in here unaided and now I am struggling to get through the door with two sticks, I think it’s safe to conclude that the answer is no.” At this he looked up, came and stood beside me, told me to stand up and then went back behind his desk, sat down and continued to go through one of his many books. After this he wrote me yet another prescription of some random acid that reacts to toothpaste and sent me on my way.
Not long after this appointment, I had my first ever support group, during which I was discussing going to see Dr Brandt. At this Lauren Becall, a woman who is now a regular at the group, told me that she had also been to see this particular Homeopathic doctor, who prescribed her the exact same thing. Concerned with what she was taking she left the health centre and went home and Googled Picric acid. To her horror she discovered this was actually an ingredient commonly found in explosives! Explosives??? What the hell? How is turning my mouth into a bomb going to help my M.E? I have heard a lot of crazy things about how you can cure your M.E but this took it to a whole new level. Not only that but I had kept it right next to my toaster. Could you imagine Demi one morning putting her toast in and getting her face blown off? No way was I going back to see Dr Brandt again, god knows what I would be given next, perhaps C-4. My relationship with Homeopathic medicine was over.
Now I in no way judge people who go down this road who have M.E. After all, if I hadn’t changed my diet myself, then I am sure I would have found the Witch Doctor very helpful and just because it didn’t work for me, doesn’t mean it won’t work for someone else, but I beg of you please be vigilant. I have heard one to many stories of people who have had there money taken by someone claiming to be able to help and then ended up no better and a couple of hundred pounds down. I understand that you want to get better, I almost ran around naked to get better, but there are also people out there who want to make a quick buck from vulnerable people desperate to feel “normal” again.
And if you have tried something and found it beneficial, good for you, why not tell us about by leaving a comment below.
Title taken from the saying “How do you like em eggs?”
I have always been a believer in fate, “what’s for ye, won’t go by ye” as my mother says. Perhaps I hold this belief as it gives me security; the thought that we are all here for a reason, there is a meaning to our lives, and that every person on this planet can make a difference for the better no matter how small, instead of the alternative, our existence being nothing more than coincidence; it just so happened that a bunch of particles came together and made the earth and some other random act of science enabled us to develop over time from apes to civilised human beings (well at least some of us are). How then do I account for all the evils of this world? Surely someone’s fate isn’t to become a criminal, murderer or as annoying and as much of an arsehole, as David Cameron? I believe that we are given choices, everyone is given the ability to reach their own potential destiny, however it’s through the choices we make throughout our lives that decides whether we actually reach it or not. The Universe places our path in front of us but it is our own choice to walk it (too corny?). My inability to believe in coincidences’ means that I sometimes think that the stupidest things are a sign; a song on the radio, a line in a film, sunshine on a rainy day and once a t shirt that was being worn by a homeless man. No matter how many ridiculous things may have came out of my trying to find meaning where there is none (mostly while under the influence), a high percentage of my belief in fate and signs from the Universe pays off.
During this Summer, Demi and I awoke one morning to find a letter posted through our front door from the Scottish Executive stating that the farm land behind our house was being petitioned to have its Green Belt status (meaning that due to it being an aesthetically pleasing part of the countryside nothing can be built on it) removed by the owners, to enable them to sell the land to developers to build houses on it. My first thought on reading this was, someone needs to tell these folk that we are in a bloody recession, hardly anyone is buying houses and the folk that are buying are most probably drug dealers, as the worse the economy gets, the greater the need for recreational drug use to enable one to forget about how they lost their business, house, wife and mistress due to investing all their money in Woolworths. My second thought was well, really the owner of the land has a good point because a chunk of land he sold to the government a few years ago now has a massive motorway running through it so I don’t know if you can still technically class it as Green Belt land when it looks right onto the M80.
I am against the Urbanisation of the country side; it’s so pretty, why do people want to ruin it by building new homes that all look the same or motorways that are ugly, noisy and encourage more people to drive, leading to air pollution and global warming? I watched Frozen Planet, I know about the kind of shit that will go down if we don’t start taking measures to prevent the ice caps melting. My idea to prevent us needing to use more land to build houses and subsequently reduce the amount of cars on the road, was to control our population size by taking inspiration from the Chinese and limiting the number of children per family to one, it would also save parents a hell of a lot of money at Christmas time. However when I brought this up with a few friends, it didn’t go down to well, maybe Scotland isn’t quiet ready for this particular Family Planning Policy. The government already won the war about building a motorway through the lovely view from my bedroom window, I would have to move out if they started building houses practically in my back garden. Which would mean no more of Demi doing my washing, cooking my dinner and generally looking after me. And possibly me starving to death as I don’t have money to move out never mind to move out and also eat. So when a leaflet was posted through the door explaining that there was going to be a town meeting to rally support against the proposal I thought, I’m there. Plus I love the Gilmour Girls and imagined it to be just like the Stars Hollow town meeting complete with our very own Miss Patty, Kirk and Taylor Doose.
On entering Moodiesburn’s very own town meeting it didn’t take me long to realise it was not full of the same quirky and eccentric people that filled the small Connecticut town were Lorelai lived. It was in fact filled with the same people that shopped in the local Co-op. Even though I was disappointed by this, I realised I wasn’t there to find the Sookie to my Lorelai, I was there to SAVE OUR GREEN BELT! At the end of the meeting I went up to speak to our local MSP Hilary Clinton, (this alias may make her seem a bit more important than she actually is), surprisingly, I didn’t speak to her about saving the Green Belt. A few months prior when I was starting up a support group for people with M.E in the local area I emailed all of our local representatives about it and she was the only one that got back to me, so I thought, why not go and introduce myself and thank her for being the only decent politician in the our area. After introducing myself and explaining who I was, she went on to tell me about how she was diagnosed with M.E in the early 90s but always felt there was something that the doctors were missing. Hilary explained, it wasn’t until she pushed to be referred to a thyroid specialist that they discovered there was something wrong. Your thyroid produces hormones called T3 and T4, what they mean I have now idea. In the UK when they take a blood sample to check your thyroid is working like it should, they only check the T4 levels. This is because the T3 hormone produces the T4 hormone so if the T4 is abnormally low or high then so should the T3 and if the T4 hormone is seen to be within the normal range, by logic so should the T3 levels. However, Hilary went on to tell me that the thyroid specialist she was referred to decided it was appropriate to check both levels during which she discovered that her T4 levels where fine while her T3 levels were considerably low (which as I said shouldn’t really happen). Upon discovering this, she was placed on thyroid medication. Not long after this appointment Hillary was scheduled to go away on holiday but due to how ill she was feeling she didn’t really want to go. After some persuasion from family she decided to go to the sun and take her new medication with her. After all, there are worse places to feel like shit than on the white sandy beaches of Cuba She left Glasgow Airport in a wheelchair, feeling worse than she had ever felt in her life and returned two weeks later having taken her thyroid medicine every day, walking and having never felt better.
Now when you have M.E you come across a lot of people who claim to have had M.E and have been cured by doing some of the most ridiculous things, like the women who only ate green food for a year. It also seems perfectly appropriate for people to send you links to crazy ass things like this and expect you to say “Right Demi, stock up on Cucumbers and lettuce as that’s all I’ll be eating for the foreseeable future”. You learn to take what people claim to have happened with a pinch of salt. Don’t get me wrong I was intrigued by what Hilary Clinton said but when I brought it up briefly with House, he said there is no evidence to support the fact that T3 levels can differ from T4 levels because they are connected. So I forgot all about T3’s and T4’s and focused on trying to get better.
A few months after this, I got an email from a friend who lives in New York with M.E, now because she is a New Yorker I feel I have to call her after a Sex and the City character, but I hate all of the Sex and the City Characters. When people ask me what Sex and the City character are you? I say none of them and I would never want to be a Carrie, Samantha, Charlotte or Miranda. Like all women in their 20s, I have obviously watched all 6 seasons but I would never in a million years want to be any of the characters or their friends for that matter. Take Carrie for instance, she is the most self absorbed bitch on the planet, her problems trump everyone else’s no matter how petty they are, “Guys I know you have just lost your whole family in a tragic boating accident but I have a date tonight with yet another arsehole of a business man and don’t have a new dress to wear! Even though I already have one billion and one outfits in my wardrobe I could wear out, I feel like I need something new as I am Carrie Bradshaw and I deserve it for being a self-centred Twat!” F*** off Carrie, no wonder you ended up with Big, he was also a twat. Samantha, I hate not only because she has tarnished my amazing name but I can’t help but think that if she lived in Glasgow, she would be riddled. Correct me if I am wrong but they do have Herpes, Genital Warts, Chlamydia and Gonorrhoea in NYC, so I feel there should have been at least one whole season dedicated to Sam Jones finding out what price her promiscuity has come at. She could have had a different STI for every episode. They would all meet at a Café for lunch and gather round talking about meaningless crap and at the end of their luncheon, Samantha would phone her local STI clinic, get put through to the results answer machine, put it on speaker phone so all the gals could hear as it said in its Stephen Hawkins voice, “Samantha Jones, today you have Syphilis” it would have been great viewing. Then you have Charlotte, little miss goody two shoes. If I was her friend I would send her a postcard everyday with an extremely crude curse word on it and then laugh to myself as she cried at the site of it coming through the door of her upper east side New York apartment. Last and most definitely least we have Miranda, the character that no one wants to be, why? Because she is shit and boring and this is all I have to say on the subject of her as she is shit and boring, (Ok Sam, calm down they are not real, they are only characters in a book, TV program and Film). Now as I said before I watched Sex and the City and I liked it, I just hated every single one of the main characters and for that reason I cannot bring myself to give my new friend from NYC such a stereotypical pseudonym. So instead I am going to call her after another famous, much cooler, New Yorker, Jay- Z.
A few months after my town meeting, I got an email from the lovely Jay-Z. In this email she told me how she had been to the doctor who felt it necessary to check her thyroid hormone levels and in doing so discovered, just like Ms Clinton, Jay-Z’s T3 levels were low while her T4’s were fine. She had been given tablets to take and although they didn’t take away her M.E, she did feel slightly better. The very next day I then seen an article (well it was really a FB post but article makes me sound intelligent and also gives the impression that I don’t spend all my time on FB looking through people’s pictures and following the arguments they are having with their other half), about how Thyroid UK were doing a section on the role of the thyroid in M.E at there yearly conference. Now ladies and gents I thought this can’t be a coincidence, partly because I don’t believe in them and partly because I had never told anyone apart from House about Hilary’s story. I thought to myself this has to be a sign from the Universe, I have to go and get this checked as I would be pretty bloody stupid not to. The following week I returned to House to tell him all about these Thyroid messages that were being sent to me from the Universe. He said it couldn’t hurt to test my T3 levels, took some blood and told me that if there was anything abnormal he would give me a call in a week’s time when the results would be in.
A week came and went and no phone call arrived which meant my results were fine. It was a good thing I never got my hopes up and imagined all the partying and running about I would be doing as soon as I got the magic pills Hilary got. However, it did make me think, why the hell did I get sent these signs from the heavens? I still don’t know but there has to be some reason for it. Perhaps it was just so I would have something to write about in this Blog.
I have a love of all things French; French Macaroons, French Pink Lemonade, Stripy tops, French Cinema, French Music, Berets and French men; Mathieu Kassovitz, Vincent Cassel and Gaspard Ulliel are to name but a few. I think I could quite easily pass for a “Frenchie” with my dark hair, gaunt face and protruding nose, either French or Jewish but I have tattoos and I discovered on a recent episode of The Big Bang Theory that Jews aren’t allowed tattoos as it’s against their religion to intentionally deface the human body, so I think that may count me out of converting to Judaism. Ironically, when I was at school I hated French class as when it comes to languages I am shit, and that includes English. I know a Hungarian girl who speaks better English than me and she has only been in the UK for 3 years. During our French lessons we were also regularly made to watch Jean De Florette and although I am a fan of French cinema and Gerard Deperdieu’s nose, I am more of a Jean Pierre Jeunet fan with his original quirky stories full of eccentric characters and his use of colour grading rather than a story about a man trying to block water from getting to his next door neighbours land. I know it’s meant to classic and has an 8.2 IMDB star rating but as a 14 year old being made to watch this film 20 times in a two year period was a torture equal to water boarding! And just like the many Guantanamo Bay detainees who developed a fear of water on re-entering the real world, I developed a fear of Jean De Florette and its subsequent sequel. I was predicted an overall grading of four by my French teacher in our final Exams, who I believe to this day still has a passionate hatred for me. However, that may be because my puerile friends at the time regularly wrote “Samantha McInnes” on every worksheet, book and aid given out in class. I was once asked by Ms Baguette if my name appeared regularly on her desk in great volume because I was an Egotistical maniac, my reply of uncontrollable laughter did little to quell this hatred. I can’t blame it all on my childish friends as I was extremely annoying but most teachers found this an endearing quality, not Ms Baguette though, as I think the women was on the verge of a nervous breakdown, she always came across as rather fragile and my constant aggravation only added to her delicate mental state. Ms Baguette, I truly am sorry for my bothersome behaviour during those years, however you were wrong with my predicted grade as I got a grade one and not just a one overall; a one in every individual part of the course. For those not familiar with the Scottish Exam system the marks go from 1 to 7, 1 was the best and 7 being the lowest or so I thought, until Jack Branning informed of this;
“Being from Airdrie Academy, I was around so much imbeciles I know the grades go from 1 to 9, 9 if u failed to attend exam, 8 if u attend and fail to write your name, and 7 if u attended and wrote at least one word on an answer paper. I know this because one imbecile asked the question before the exam because he did not want the embarrassment of an 8 or 9 but was happy with a 7”.
I do not believe I obtained the top grade through my own merit, as I said before I am shit at languages including my own. In fact the only phrases I can say in French are Je dois y aller (I have to go) and un ticket du autobus s’il vous plait (a ticket for the bus please). I didn’t cheat instead I believe that a distant French ancestor looks over me and possessed me during all four exams enabling me to attain top marks and leaving behind a love for all things French; with the exception of Jean De Florette.
Turning 24 has never appealed to me for many reasons but one of these reasons is that I would only have one more year left before I would qualify for the overs category on the Xfactor. Not that I am ever planning on entering, as I am tone deaf, but you can no longer call them the oldies if you are in that age range (Incidentally, if I did apply my audition song would be Janis Joplin’s Me and Bobby McGhee and I would rock it). I have seen my friend Sandra Bullock driven mad by this very idea and I prayed to God that this would never happen to me. Unfortunately, someone had other ideas, as on the 26th October 2011 I had been on this earth for 8765 days or 24 years for those of you who don’t want to do the math, but instead of dreading this mile marker I was actually looking forward to it.
I started my 24th year on this planet by being awoken rather early by the masses of Facebook Birthday messages that were posted on my wall by friends, colleagues and acquaintances, who I can only guess were on their way to work and making the most of their bus journey by checking out the great number of Facebook posts from people who supposedly suffer from insomnia, here’s a tip for those regular “It’s 3am and I can’t sleep” posters, stay the hell of Facebook and you might have better luck. As someone who regularly has interrupted sleep patterns I understand how frustrating it can be but the last thing I would think of doing at 4 am while I am lying awake is to pick up my phone and post about how “my body has been engulfed by the darkness but my mind is still in the light day” (this is me paraphrasing an actual wall post I once read). Don’t get me wrong I was overwhelmed by the response to my birthday in the virtual world, I just wish it wasn’t so early. However it did teach me a lesson; turn of Facebook notifications at night.
Once my mind and body found “the light of day” Demi Moore presented me with what may possibly be one of thee best presents I have ever received; an electric blanket. I am freezing cold 95% of the time, the other 5%, I am so warm I feel like I may pass out. To my bed I usually wear a tshirt, hoodie, thick men’s jogging bottoms and two pairs of bed socks. On top of that I have my duvet, two blankets and sometimes the dog and even then I feel like I am camped out in an igloo. An electric blanket was just what I needed to keep me warm at night and also to reduce the pile of washing Demi had to do. After I got over the excitement of the idea of being warm at night without the use of layers upon layers, I headed off to my weekly physio appointment.
I finished hydrotherapy at the end of August and since then my aim was to get into the Rehab class. Not substances abuse Rehab, lower limb rehab, where I would be in the gym with others whose legs were also not the greatest. I would be given my own exercise plan to work through every week with the aim of building up my legs to cope with everyday life. Throughout September and the beginning and middle of October I was told I wasn’t quite ready for this next step yet as I would struggle with certain exercises but on my Birthday of all days I left singing Amy Winehouse’s Rehab because eventually the Physio “tried to make me go to Rehab” and I said yes, yes, yes.
Physio does tend to make me tired and sore for the rest of the day but today was not a day to be disappointed at having to spend a few hours in bed, as I today I had my new electric blanket to keep me warm and I have to say it was a god send. I know some people are apprehensive about using electric blankets, mostly because they tend to be for old people and have been known to start fires. My friend Kylie once told me a story from when her sister Danni was younger and was having a sleepover at her Gran’s house with one of her friends. To keep them warm, Granny Minogue put on an electric blanket only for it to go on fire with Danni in the bed! Danni got out unharmed and they put the fire out without a problem. However, since I knew of this happening I decided to do some research just to make sure I wasn’t going to awake one morning to find my skin melted off and to my delight, discovered that Health and Safety has moved on in the past 10 years and electric blankets now come with precautions which means that once they get to a certain heat they cut out, so all is safe. I have been using it now for many weeks now and I have to admit that my legs have never rested better.
In the evening my family and Hilary Duff joined me for dinner. Demi made my favourite; Stew and potatoes and whilst Posh and Jack brought with them some Pink French Lemonade! After dinner Demi decided to pop some champagne Rumor had gotten for her 18th Birthday, to celebrate how far I had come. I couldn’t help but think whilst everyone was raising their glass of Champagne and I my glass of Pink Lemonade that yes, I had came an incredibly far distance already but there was also a hell of a long way to go yet. I don’t think this is me being pessimistic, I do believe that I will become M.E free but I have to be realistic about it.
Title taken from the song “Happy Birthday to me by Bright Eyes
Today we have another post from our M.E from the other side series this one is written by my sister Posh Spice.
Let me tell you about my sister. She is smart, adventurous, funny, moody, weird, interesting, passionate, generous, stubborn, eccentric, loving, super easy to get along with and she has M.E.
When we were growing up, whenever I left the house, Demi would always call out after me, “take your wee sister with you!” to which I would grudgingly reply “but mum, do I have too”. Needless to say the answer was always yes, as if it was ever in question. You see, when you are an eleven year old girl who is heading down to the street for a game of Kirby with the latest interest in your life, in this case boys you go to school with, the last thing you want is your eight year old tom boy sister, in a sweater shop jumper, cramping your style.
The thing was though, maybe I didn’t realise it at the time but she was, and still is a lot cooler than me, and I may have been jealous and didn’t want the boys to realise that too. She listens to rock bands and has deep conversations about politics, I on the other hand, listen to Take That and most of my conversations revolve around Cheryl Coles latest love interest. Furthermore, whilst I am a big woos, Samantha is fearless and often would let wasps crawl all over her face for the sole purpose of freaking me out. Unsurprisingly, she succeeded. This daring behaviour and bravery would grow to be a common factor in the next stages on Sam’s life.
When Sam was sixteen, she announced to a very worried Demi that she was off to Africa to begin her mission to see the whole of the world and help some people along the way. After Demi climbed down from the ceiling, her first words to me were, “you know what “our daft Samantha” (as she is known as at home) is doing now…, you know what she is like, she’ll get eaten by wild animals or murdered by the natives, I don’t think she should go”. However, as I mentioned before, Sam is very stubborn and has a tendency to fight for what she believes in. So after many tantrums and promises of calling home, Demi gave into her better judgement and signed the consent forms, so off Sam went to the other side of the world, as if there was any doubt.
Now after a week, Demi hadn’t heard anything from Sam, “she’s probably not near a phone or hiking up a mountain” she tried to convince herself, “she’ll call next week” she repeatedly told herself. After six weeks with no contact, her tone had definitely changed. Demi had stopped making excuses on Sam’s behalf and the most frequent comment changed to, “that wee shit, she has been away for six weeks and hasn’t even bothered to phone, I am going to kill her when she gets home”. Ironically, I am sure that the possibility of Sam getting killed was one of the main reasons why Demi was reluctant to let her go to Africa in the first place and now her impending death was going to be her welcome home gift. In the end, Samantha returned home safe and sound with many stories of her trials and tribulations without ever making that phone call home to reassure us that she was okay. Whilst we all got small memento’s of Sam’s time in Africa, Sam herself decided that the best way to remember her time there was to have a massive African tribal man dancing, tattooed, 2 foot tall down the side of her body. This perfectly sums up how independent and free spirited she is and M.E has tried its best to change that.
It’s hard watching someone you love being held captive by this disease. Especially an over active 23 year old who once disappeared to the other side of the world without even a thought for her wee worried mum at home.
You feel helpless and useless because there is nothing you can do to make them feel better and there is no way you can understand how they feel. All you can do is try to be normal and provide comfort and support when they need it. Samantha would never ask for help, but I will always be there should that day ever arrive.
Sometimes they have to push you away because they just don’t have the energy for you because M.E has used it all up, and it’s not their fault its just the way it works. You have to remind yourself that the funny, smart, eccentric genius is still in there somewhere; you are just going to have to wait a bit longer for it to come to the surface, and like all good things in life, Sam’s banter is worth the wait as I’m sure all the readers have found out for themselves
M.E has changed all of our lives, Demi has made it her personal mission in life to cure Sam of this disease, spending an endless amount of money on private doctors and Sam’s special M&S only diet. Not that I complain however, I often find any old excuse to pop round for dinner and sample Demi’s new found culinary delights. Certainly makes a change from the burnt pizza we grew up with and no Demi, tomato ketchup does not solve everything. Like when Samantha was in Africa, I know Demi lies awake at night worrying about “our daft Samantha” and what will become of her.
For me, I know that behind her new fashion accessories for spring/summer (“the sticks”) and the endless tiredness, my sister is the same determined 16 year old, who wanted to see the world and help a few people along the way. M.E hasn’t changed this and never will; she won’t let it, it’s just slightly limiting her geographically at the moment.
In the last few years M.E has tried to steal my sister away from those who love her the most but her courage and determination keeps drawing everyone closer to her as she battles to push M.E further out of her life. She continually inspires all of us in our own lives everyday. I am a very proud big sister.
So M.E, let me give you some advice from someone who has had there ass beaten by Sam many times; I’d back off if I was you, because she is determined, packs a punch and once she gets you in a head lock, its time to give up.
At the beginning of November 2011 Demi decided to take a break from work, bad weather and the stresses of everyday life and jet off to Egypt with the Gayle King to her Opera Winfrey. The last time she went on holiday, Posh and Jack were left with the job of looking after me, after all there is nothing cooler than being 23 and having babysitters or as I prefer to call them, my bitches. However all was not lost, as Posh took me out for lunch to this little café I love in Fintry, which will one day be where I reside as I love it there. I just need to win the lottery or marry a rich man to be able to afford a house in this prestigious area of The Campsie Fells (rich men or men who feel that within the next 10 years could possibly be able to buy me my dream house, whether it be through hard work, a large inheritance or something you would rather not disclose, should email their proposals to firstname.lastname@example.org). However in November, Demi felt that I was able to look after myself with help from my younger sister Rumour who’s usually is about as useful as a chocolate teapot. No offence Rumour, but it is true.
Before leaving I convinced my mother to put me on her car insurance so I could drive to the local shops or any appointments I needed to go to. Now I know what your thinking, that I, Samantha McInnes, before my legs got buggered, was a terrible driver and now I walk with a stick and even then I still cannot walk very far or very fast, so what in the name of God made me think that I could drive an automobile when I would struggle to press hard on the brake or may in fact drive somewhere and be stranded as my legs would be too painful and weak to drive back? I knew all this but I chose to ignore it. I had tried driving a few months earlier, Mary and I went to the local supermarket and by the time I returned my legs were in agony and experiencing spasms, after that I gave up on the dream but I thought enough time had passed to give it another try and Mary warily agreed. The prospect of driving again got me as excited as George W. Bush in a firearms factory, “shoot em up boys!” After I stopped running due to M.E, driving became almost a kind of escape for me, I loved nothing more than driving along with my music up full blast, singing at the top of my voice and catching people staring at me like I was a lunatic for performing as if I was on stage at the Royal Albert Hall when I was in fact in my car. Being able to drive was also about me getting my independence back instead of having to rely on others all the time. It was almost as though being able to get in a car and being able to drive wherever I wanted, was the first step in getting my life back after a rather shit year.
Excited by the prospect of driving, the day after Demi left I took the car over to my friend Elvis’. The ten minute drive there was manageable, were my legs slightly worse than usual? Yes but I had been expecting that. The drive home again made them slightly worse but I went straight to bed when I got in, rested up and the next morning the legs were still sorer than normal but it was a manageable pain. A few days later empowered by my trip to Elvis’ and slightly over confident, I decided I was going to drive into the city centre. With this new ugly motorway that intrudes on the lovely view of where I one day want to live, it only takes 20 minutes by car to get to the City Centre. It’s a straight road so it should have been relatively easy to drive there and back. That is if you weren’t me who decided to drive in during rush hour but in my defence, I hadn’t driven in over a year, I forgot rush hour existed. Drivers in rush hour are mental! They weave in and out of lanes like they are in Grand Theft Auto but without flame throwers and a mission from an underworld criminal that goes but the name of Fat Tony or Heavy Nuts Jungle Robba (this is what came up when I typed my own name into a gangster converter). These speed merchants cut out in front of you, not giving a damn if they have given you enough space to break in time. They don’t realise that all this does is cause more traffic jams as people are having to break to stop from crashing into these lunatics. All they want to do is get home as fast as possible, have these people not heard of patience? Because of this, by the time I got into the city centre my legs were trembling from the amount of stopping and starting that I was forced to do but it was not over yet, as the city provided yet another obstacle that would impact on my legs; pedestrians with a death wish. Here’s a tip for you all, see that big button you press that turns the red man to green, its there so I don’t knock you down. Would you run out in front of a train? No, well don’t run out in front of my car then! Did these people not know I was having trouble with my legs?
When I finally stopped at my destination, not only were my legs killing me but my nerves were shot to pieces by the lunatic drivers and pedestrians with a death wish. I had to go into Posh’s work and sit down for a bit to get over it all. “What doesn’t kill you makes you stronger”, this is what I text to my friends to tell them about this massive achievement but when I finally managed to get home I didn’t feel proud or happy, I felt devastated, as my legs ached beyond belief and continued to do so for the rest of the week and with that I knew that my dream of driving and getting some of my independence back was over.
On the day of Demi’s homecoming, there were chores that needed done around the house to stop her ritual moan about how untidy and dirty the place was compared to the vision of beauty it was when she vacated it. Her favourite complaint was always the worktops. The worktops in our house are impossible to clean unless you have a PHD in kitchen cleaner. It seems that the more you try and get them to shine like a Dettol advert, the dirtier and greasier they look. The fact that I never manage to get them to sparkle pisses Demi off and she ends up just re-cleaning them all over again. By the end of it, they are so clean you could perform surgery on them. For this reason I thought I would appoint myself on washing machine duty, an easy job that doesn’t require the use of much energy and the only way you can mess it up is if you stick something pink in with the white and luckily no one really wears pink in this household. After sitting down and watching the previous nights Chelsea Lately, I thought it was time to start my only chore; I went into the bathroom and picked up my first pile of washing and as I turned to exit I noticed something black down the toilet pan. My first thought on seeing this was puzzlement; I thought long and hard and did not remember emptying my bowels at any point during this day and anyway my jobbies (this is a poo for those who don’t speak Scots) are not that big and I always flush. I was then disgusted by the fact that someone had done a massive jobby in the pan which had now grown into something that closely resembled the Shit Demon from Dogma but on a much smaller scale and had left it there as a present for the next person. I emptied at least half a bottle of bleach down the pan and flushed expecting it all to just disappear but when it didn’t budge and instead seemed as if it was starting to increase in size, I started to freak out. I did the only thing I knew how to in these situations; I phoned Posh Spice. In a panic these were my words to her: “Ahhhh there is something big and black down the toilet! It’s either a Shit Demon that will soon grow to the size of a full grown man and smother me with faeces or some kind of massive toilet loving rodent that likes to bite peoples bums as they go to pee”. Her request for me to stick my hand down and pull whatever it was out was met by a statement so full of curse words that if it is ever repeated, statues of the Virgin Mary across the world will start to cry, this left only one option, Posh was going to have to come over and fish it out herself. While awaiting Posh’s arrival I got a phone call from her Fiancé Jack who had been online Googling animals that come up the toilet and comparing it to the photograph I had sent him. After a long conversation of whether this was a sewer rat, a rodent that climbed up the brick work into the bathroom and then fell into the toilet or indeed a shit monster, we realised the only way we would find out would be for me to build up all my courage and stick a hanger into it. The sensation I described as the following “imagine if Ben the dog was down the toilet and you poked him with a stick that’s what it feels like” (Please note that it was not Ben the dog in the toilet pan) but at least it ruled out the Shit Demon. Sticking the hanger into the toilet sickened me so much that I hobbled out the bathroom as fast as I could, leaving the hanger in the toilet and shutting the door behind me, refusing to go in again until Posh got here. When Posh arrived, after what felt like a decade but was probably more like 20 minutes, I was distraught, between this thing in the loo and my driving fiasco I had been sent over the edge. Posh unscathed by the possibility that she may be eaten by the giant panda down the toilet (yup it got more extreme with every minute that passed) went in to inspect and sent me for a bucket to put this creature in. As posh reached in to pull it out, I shut my eyes tight, unable to look at whatever it was that had terrified my life for the past half an hour. I only opened them again when I heard Posh’s screams of “You stupid F***ing idiot”, it was then I seen the actual culprit in Posh’s hands; a pair of black thermal socks from the washing pile I had picked up to put in the machine.
Title taken from the name for a shit demon as seen in Kevin Smiths Dogma
Tags: Chronic Fatigue Syndrome, Dogma, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
To be honest with you all, I am suffering slightly from writer’s block. If this was a cheesy musical, at this moment in time I would start speaking in a shockingly bad Camden Town twang before I tried to encompass the talents and cool exterior of Just Jack whilst singing,
“ I get this writers block,
it comes and quite a shock,
Now I’m stuck between a hard place
and the biggest rock.”
However, before I would even get to the chorus, I would be knocked down by the barrage of Buckfast Tonic Wine bottles that would be thrown in my direction for acting like a massive twit, (twit with an A instead of an I). As much fun as it would be to burst into song and dance to celebrate defining moments of our day, such as ordering your ham, cheese and tomato panini, there is no place for it in the real world as it would just make people bloody annoying! So instead, I sit in my room, covered with my Superman blanket for warmth (don’t laugh, my Superman blanket was a gift from my amazing friend Kylie, who’s now dead. Nah only kidding she is still very much alive, I just love my blanket and don’t want people to take the piss out of the fact that I am 24 and have a superman blanket). As I sit and ponder about why I can’t think of anything to write I realise that unlike Just Jack this hasn’t actually came as that much of a shock as the period I am trying to write about is December and January.
Since last February I had seen a massive improvement in my legs on a week by week basis, however, after November things seemed to change. It may have been the fact that the more I did, the more I wanted to achieve, I no longer needed to use my stick in the house so I assumed that it wouldn’t be long until I was walking outside without it too, I had been able to start to do more socially so thought it wouldn’t be long until I could do something all day, everyday and not get one bit tired from it. However, it seemed that over the months of December and January progress seemed to stagnate. I may now have been walking to the local shop during my daily exercise but trying to surpass this proved to be too much, it was beyond frustrating. I wanted to get back on track and to do that I needed to progress, not just stop and take a break in the middle ground for the foreseeable future and so for the next few weeks frustration and dissatisfaction consumed my time.
It was only after spending weeks in this mind set and getting extremely tired of it (I missed the positivity) that I took a step back and realised that my progress had actually not stagnated at all but that I had forgot to appreciate the smaller things I was achieving. I remember when my legs first buggered up and I started tapping my feet to the music again for the first time, seems small but it was a massive achievement at the time but now instead of appreciating every new feet tapping moment, I was trying to run.
That’s the thing with M.E, you make a lot of progress so feel like you should then be back on par with how “normal” folk recover, but it’s not like that. Its small steps every bit of the way and its important more than ever for me to appreciate every single one of these moments, no matter how minuscule they seem.
Next time on the Sam and M.E Blog: Sam makes a triumphant return!
Title taken from the song “Writers Block” by Just Jack.
I realise in my last blog post, I wrote that this weeks Blog would be about my triumphant return, however I don’t feel I have given you all a full insight into how I have spent my year out of the working world. Yes you guys know all about my trials and tribulations, how I stopped walking after a trip to Manchester, my run in with Susan Boyle, how I think socks down the toilet are mythical creatures or mutated rodents etc, but what you guys don’t know is how I spend a large part of my day while resting. Now this isn’t something I am proud of so please do not judge me on it. This is as shameful as those pathetic men who never leave their house and live their lives online, spending 23 hours of the day watching hard core Russian porn, while marrying a stranger and managing a hat shop on Second Life. Ladies and Gents while I am lying down resting, I pick up my phone and use it for one thing and one thing only, Facebook! From the very moment Mark Zuckerberg sat down in his dorm room and wrote code that would one day become the site that we all couldn’t live without, my fate was sealed. I am a Facebook addict and I hate myself for it.
In the world of FB, your closest friends consist of people you would actively avoid if you seen them in the flesh. I know this because I am a regular dodger of so called “friends” in the street, at local shops and on public transport. Earphones in, head down, scarf and hood up, you may look like a rioter or terrorist but at least you won’t have to talk to your fellow Facebooker. If I wouldn’t talk to these individuals in the flesh, then why the hell do I care what they post on a social networking site? Because like all of you, I am a human being and what makes us top of the food chain is our thirst for knowledge. It has taken us from Cavemen running around trying to make fire to the debt ridden, war hungry people we are today. Unfortunately this thirst for knowledge not only allows us to invent cool shit like the iPhone but it also makes us incredible nosy, so much so that we befriend people on the internet we haven’t seen since 1999.
Another thing that makes me hate my addiction to Facebook and subsequently myself is some of the crap people post on it. Some classics are;
- The tagging of you and your partner in bed to give the impression that your about to have a wonderful evening of love making. When in fact it’s going to be anything but as you are lying in your bed on Facebook tagging shit!
- The constant changing of your relationship status between in a relationship, single, it’s complicated and I am now asexual. If you change your relationship status more than twice in one week than you are either attention seeking, in an imaginary relationship with someone mentally unstable or your relationship is dead so give up on it.
- The attention seeking posts. Here are examples of just a few;
“Now I know who my REAL friends are!!!!!!”
“Why do I even bother?!?!?!?!?!?!?!?!?”
“My life is shit (Insert an emoticon of small poo)”
“Why can’t people just accept we are together I know we are brother and sister but is that illegal?” (Yes)
“Think I may have murdered someone LOL”
These posts are then usually followed by a million and one comments asking what’s wrong, messages to PM (private message) someone or what’s supposed to be inspirational reassuring comments. Then the original poster usually has the cheek to say “I don’t want to talk about it”. If you don’t want to talk about it, don’t post it on the bloody internet in the first place. That would be like me saying, I write a Blog about my life with M.E but I don’t really want to talk about it, but PM me :-D.
- Attention seeking posts about how shit your life is, followed 20 minutes later by a post about how good your life is. Make up your bloody mind!
- Healthy people who post about how they are “dying and so sick” and that evening post about how pissed they are accompanied with 576 pictures of them at the dancing. If you were that sick you wouldn’t be out drinking your weight in alcohol would you? I have a lot of friends who have various long term health conditions on Facebook and most never post about how shit they are feeling on a daily basis and those who do, don’t then go out to clubs, get pissed and post photos of themselves snogging some random dude. Why? Because they can’t, as they are actually ill.
- Family or relationship fights played out for all to read on Facebook. People, there is a time and a place. You should not be arguing about how your boyfriend slept with your best friend, your sister’s cocaine habit or about how your great aunt is a pensioner’s prostitute and you’re her pimp, on the net. Come on folks, privacy.
- The regular insomnia poster. You know my feelings about this already folks.
- Posing duck faced photos. Pouting your lips and taking thousands of photos of yourself in front of your mirror with your phone in shot is not cool, it isn’t a “sexy pose” no matter how many horny 16 year old boys comment underneath it that it is.
- Poking! What the hell is even the point in this?
Now don’t get me wrong, I may have posted one or two similar statuses to this in my time, but it wasn’t my great aunt who’s pimp I was, it was my great grand aunt. I may have also inadvertently offended the odd person with my rather warped sense of humour but even though Facebook and many other Social networking sites anger me on a regular basis, I can’t give them up as I am a weak individual. This Ladies and Gents is how I have spent a large part of my year.
The computers really are taking over the world and I am letting them.
Title taken from the film “The Social Network”
Tags: Chronic Fatigue Syndrome, facebook, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Being someone who doesn’t particular like to live in what my older sister calls “The Real World”, I tend to imagine scenarios that the so called “normal” among us don’t care to waste their time thinking about. One of these common scenarios is, what to do in apocalyptic type situations? I have different action plans depending on what danger may be causing the human race to face its impending extinction. For instance, in the case of a zombie apocalypse, one needs to grab as many supplies as they can possibly carry on there back (including a tent) and head out of highly populated areas as fast as your legs can carry you. Now this is where the majority of people make a mistake when they have zombies running after them, there weapon of choice tends to be a gun. What’s wrong with this? Yes it’s fast and the zombies drop like flies but the noise of gun shots attracts even more zombies and before you know it, you have two thousand of the walking dead coming at you and no bullets left to shoot them in the head with. In this situation, what you need is a crossbow. It’s fast, doesn’t make a noise and you can re-use your arrows. My next apocalyptic type situation is nuclear war. This is totally different as you have less control and if it’s you against a nuclear bomb, you are going to lose. If you’re within ten miles of where the bomb hits you have no options as your life was ended as soon as some government monkey typed in the activation code and pushed the Big Red Button. Up to about 50 miles, you may not die straight away but the electromagnetic radiation from the nuclear fallout will rapidly destroy your cells one by one until there is nothing left for you to do but sit tight and belt out the Pixies, Here Comes Your Man,
“I know the nervous walking,
I know the dirty beard hangs,
out by the box car waiting,
take me away to nowhere plain”.
If you happen to be over 50 miles away, you better hope that the weather is in your favour and get your ass as far away from ground zero as possible. 300 miles should do it. Under no circumstances should you eat anything from the ground before the 300 mile mark as all it’s going to do is poison your ass. Once you have reached the safety zone, you then need to get together a band of merry men, train hard, build up an army and wait for the ideal moment to infiltrate and take down the bastards that did this in the first place (incidentally, the last part is also what you do if some evil dictator takes over your country and tries to wipe out the majority of its population). Another situation that I have mentally prepared for is the earth being struck by an asteroid. The first step here is to reach high ground to avoid the tsunami’s, then once they have passed, find somewhere under ground to live with a shit load of supplies until the ash cloud that chokes out the sun has settled and we can once again live above ground. Perhaps if the dinosaurs had followed this plan, we would now be going to Edinburgh zoo to visit a T-Rex instead of two pandas who can only be in the same room together on the two days a year the female is ovulating or they would kill each other. My last plan is inspired by my favourite comic book hero. What to do if a Planet called Apokolips comes hurtling towards earth drawn by the force of Lord Dark Side? In this scenario there is only one person who can help us…Superman! I always imaged that I would be one of those people who would strive in such situations, however, since I have been taken over by my own personal Dark Side, M.E., I have came to realise that I may not be able to carry out my well thought out plans in times of pearl, in fact I have became part of the vulnerable section of society; but not for much longer.
After Christmas passed I was focused on one thing and one thing only; getting back to work. People tend not to realise how much work relates to your own sense of independence. Not only do you get to be earning your own money again but you have a purpose once more. Even if that purpose may seem menial to others, for someone who has been unable to do the most basic of jobs for over a year, For me, it’s equal to becoming a neurosurgeon, NASA scientist or waking up one morning to discover your actually President Obama. After getting the all clear from House that it would be plausible for me to go back to work for three hours, three days a week, spending only 30 minutes on my feet each day and building it up over time, I was ready.
The excitement of returning however was dampened by reservations I had that was causing me some anxiety. It had been a year since I had been in the working environment and although I was returning to the same type of work but with less responsibilities, I couldn’t help but worry that I no longer remembered how to do even the basic parts of my job. Would all those years I worked my ass off now be for nothing and I would be starting from scratch once more? Although I was going stickless in the shop, I walked at a very slow pace. I couldn’t help but wonder what customers would think. I really didn’t want to have to explain my situation to a random all because they thought I was taking the piss as I wasn’t rushing to serve them. As you have probably summed up from reading my blogs over the last 11 months, I am a bit strange but I like to think in a good way. However, when you are working with people that don’t know you particularly well or even at all and the one word they would use to describe you is “odd”, that’s not really a good thing. I used to be able to filter out the madness when first meeting people but I have spent the last year around people who I know extremely well and people who I didn’t have to filter out the ridiculous things that enter my brain with. During this time I have never needed to make small talk and because of this I have kind of forgotten how to do these basic skills of socialising, meaning I say stupid things and put my foot in it a hell of a lot. It’s amazing to be able to say to people “Yeah finally I am going back to work” but it’s extremely hard to explain to them the worries and anxieties that you feel on top of the excitement. I also understand what it must be like for people who have never been in that particular situation, to understand and empathise with it. After coming to terms with the apprehensions and reservations I had, I knew that I could overcome them and went back to being rapturous about getting a large part of my old life back.
In February 2012, almost one year to the day off my memorable trip to Manchester, I awoke at 8 am, washed, got dressed, made some porridge, picked up my stick, walked down to the bus stop listening to Bruce Springsteen, got on a bus to Glasgow and made my triumphant return to the work place and the first step to getting myself ready again for any apocalyptic type scenarios that may cross my path.
Title taken from DC’s Superman
Tags: Apokolips, Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes, Superman
On my third week back at work my morning started as usually. Over the years I have tried and tested many ways to wake me from my slumber mostly with music, first off there was some The Clash, I fought the Law, however that made me wake up in a state of shock every morning, then came Jeff Buckley’s Grace but that was so relaxing I always fell back asleep. After that came an alarm clock, Jen Garner bought me with a helicopter top that would shoot off, fly around my room and emit a high pitched squeal until I caught it and placed it back on its docking station this lasted about two weeks as one, it required too much energy for early mornings and two I was fed up being hit in the face by a plastic toy helicopter propeller. After this I returned to my music to help revive me after a night of sleep and for a while I thought I had nailed it with Jason Mraz’s and Make it Mine, the starting lyrics “Wake Up Everyone” made me open my eyes with a smile on my face however after 3 months of listening to this song everyday I grew to hate it, actually not hate, despise! When ever it was played on the radio I turned into one of those brain washed CIA killers who once they hear the magic words turn into animals and murder intended targets without even knowing they were doing it. My teeth would clench, I’d start to foam at the mouth and my body would shake uncontrollably. Realising this wasn’t good for my mental health I went back to the drawing board. I needed a song that didn’t wake me up with a bang but didn’t make me fall back asleep and most importantly I wouldn’t grow to hate after a couple of weeks of hearing it non stop and then like Superman himself whispered in my ear I had it, The Superman Theme tune by John Williams. Not only does it start off slow and relaxing and after about 30 seconds starts to kick in allowing me to awake peacefully but not fall back asleep, waking up to the Superman Theme every morning empowered me.
After I awoke feeling ready to fight for “Truth, Justice and the American way”, I picked up my phone and put on the BBC news app. I do this every morning as I am concerned I may wake up one day forget to do it, get dressed and walk out my front door to see that we have been invaded by aliens and then get incinerated by one of their laser beams. I then checked my emails, sent off some replies while pondering how much longer I could stay in bed without risking missing the bus to work, this thought was soon interrupted by my dog scratching to get out the back garden for his morning pee.
I got out of bed, opened my bedroom door, stepped into the hall way and suddenly someone pressed the slowmo button on my life and I lost control of all my actions. My legs gave way from underneath me, I fell to the ground with a thud, landing on my side with my arm taking most of the impact. The next thing I remember is my head continuously hitting off the ground and Rumour entering the hall and shouting on Demi. As gradually started to regain control of my motions and Rumour and Demi helped me back up and into bed. After about 25 minuets I finally felt ready to try and get up again as I was determined to go to work despite protestations from Demi.
Yes, yes, yes I know what you’re thinking, stop pushing yourself you stupid fool, this has never happened before perhaps you should go and get it checked out but I only work for three hours, spend most of it sitting in an office, I had only been back for three weeks and to be honest I wasn’t particularly concerned by this funny turn, I was more concerned by the carpet burn that was left on the side of my face by my head continuously hitting of the carpet in the hall way. I got ready, attempted to cover the new feature on my face, had some porridge, Demi gave me a lift to work and completed my shift. Was I tired, had a headache, sore all over and my legs were worse than usual? Yes but I sat down for the whole three hours and didn’t push myself. During my shift Posh phoned to see if I was OK, Jack had to go up north to check on a project he was working and Posh decided to get up and half 5 in the morning on her day off to go with him (can not think of anything worse to do on my day off). From whatever Highland village they had stopped at she asked as this had never happened before should I not go and see the doctor? But I knew exactly what would happen, I would phone up be unable to get an appointment for 3 weeks, go and see house explain what had happened and although he would be so nice and understanding about it I would be told since it hadn’t happened again it was probably just be my M.E and there was nothing they could do about. I think sometimes I could turn green and someone along the way would say “Oh don’t worry about its just your M.E”. So I didn’t even bother.
I had the next day off to rest and by the following day I was back to my normal self and touch wood this funny turn hasn’t happened again.
Title taken from the song “Make it Mine” by Jason Mraz
Our second Vblog by Black Circle Films.
For more videos by Black Circle Films check out his website at http://www.blackcirclefilms.com and follow him on twitter @blackcircle26
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
It’s the first ever Sam & M.E Podcast! Click the link below to listen
Tags: Chronic Fatigue Syndrome, Faith Evans, Hilary Duff, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
I usually start my blogs by writing a long-winded monologue about some random crap that seems to have nothing to do with the message I am trying to portray. But today is going to be different. Today I would like to start by showing you what my handsome and amazing brother in law wrote, to nominate me to run with the Olympic Torch.
“When I seen this opportunity, only one person came to mind. My sister in law Sam is the inspirational symbol you are looking for and her story is sure to enlighten everyone who hears it. Sam was an extremely active teenager and has climbing Mount Meru, to add to her list of achievements. However in the summer of 2010, Sam after a long period of illness was diagnosed with M.E. Whilst this may stop others, and has indeed reduced Sam to walking with sticks, she has tackled this head on and is fighting to beat this misunderstood disease. Sam has now defied belief and has started an online Blog to tell people her story and share her experiences. This has further led to her starting her own local support group and has appeared in local papers, magazines and radio stations to air her thoughts and broaden her ever widening audience. The feedback received is exceptional and with the support of her new found friends, is striving towards beating this illness. She has helped many people already, inspired many more, and is loved by all. The Olympic creed suggests the most important thing in life is not the triumph but the struggle, and Sam is living this fight. I hope that you share my views of this outstanding individual but should you need more convincing, please visit her blog, samandme.org” – Jack Branning
Not liking to do things by half, I decided once I got back from visiting Faith in Dubai, I was making it my mission in life to not just carry the Olympic Torch, but to run with it. I thought how good an ending to a rather shit time in my life will that be? M.E took away my ability to walk but after a year and a half of Physiotherapy and hard work and determination, I would close this chapter by running with the Olympic Torch a symbol of overcoming struggle to triumph. Only one problem I couldn’t actually run yet.
I used the rest of April and beginning of May to mentally prepare myself for this feat. Then two weeks before my “Moment to Shine” I decided it was time to face the truth. Did I have the ability to run for the whole 6 mins it would take me to pass on the Torch or was I going to be carrying the torch looking more like I was going a leisurely stroll down a busy duel carriage way? There was only one way to find out. I put my short shorts on, stuck on my running shoes for the first time in three years, put my headphones in my ears and started to jog. I ran down the street and out along the crescent and thought to myself, “you know what? I am doing not to bad here”. In my head I was just imagining the shock on all my friends and families faces when as the Olympic flame was being passed to my torch I started to run. It would be just like the “miracles” you see on American TV when some crazy possessed looking man who is chanting shit about the devil, brings up a poor cripple boy, slaps him across the face and suddenly he’s cured. I was thinking people would be fainting by how epic this was going to be.
But just as I was getting into my stride I noticed a car I recognized coming up the street, it was Courtney’s mother, Sharon. Wanting it to remain a secret and surprise everyone on the day with my amazing accomplishment I only had one option. Dive behind a bush. Except there was no bush, so the only option I actually had was to dive into a ditch that was full of stones. And although slightly battered and bruised, I evaded Sharon’s eyes and continued on my epic miracle journey. After five and a half minuets I entered the field behind my house, which looks down into a valley. As I came to the top of the hill, I stopped to take in the view of the Campsie Hills, as I did this Joni Mitchells “Both Sides” came on ipod and it suddenly hit me. I Samantha McInnes who a year and a half ago could not walk had just ran, YES RAN for 5 whole minuets. I felt a sudden wave of emotion coming over me and my eyes started to fill up with tears of utter joy, as if the hand of God had just slapped me across the face. I was taken aback by the emotion hitting me all at once, how it felt when a trip to Manchester resulted in my legs packing in, having to be bathed as a grown women, by a nurse in the hospital, needing to use a wheelchair to go anywhere that wasn’t two steps away, missing out on amazing experiences with my friends because my body was so shit and now I had overcame that and was bloody running. When I realised I had started to cry, I did want any self respecting Glaswegian would do. I stopped, dropped to my knees and shouted at the top of my lungs, “FUCKING YASSSSS!!!”. I imagine it would have been a much better Hollywood film moment without my Tourettes-esque out burst and the fact the valley the hill over looked was actually a motorway.
On June 9th 2012 I got up, dressed in my all white slightly see through Olympic Tracksuit, bleached my teeth, got in Jacks car and went to Clydebank where the Olympic Torch Relay bus picked me up and took me to my starting position on Garshake road, Dumbarton. Where not only did I carry the Olympic flame but I ran every step of the way, surrounded on either side by all my friends and family who have supported me, all through out my time with M.E.
Then I went home and slept for a long time.
Title taken from the song “Both Sides Now” by Joni Mitchell
Tags: Chronic Fatigue Syndrome, Faith Evans, Inspire a generation, Jack Branning, London 2012, London 2012 Torch Relay, M.E, ME, Moment to Shine, myalgic encephalomyelitis, myalgic encephalopathy, Olympic Torch, Olympic Torch relay, Olympics, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Everyone remembers firsts; the first time you rode a bike, your first kiss, your first love, the first time you get got drunk on a bottle of vodka your crazy friend Courtney, got delivered to some randoms door which then led to you being escorted from that randoms house, falling down a rather large hill, ripping your new jeans and then having to go home and explain to your mother that this wasn’t a drank souvenir it was in fact you trying to make a fashion statement. Ok the last one may have just been me but you get the point.
I consider myself to be a person of extremes, I am either so laid back I give the air of not giving a shit about anything or unbelievably hyper and excitable that many people have suggested sedation. Now having ME and having been not well for a few years caused me to embrace my laid back side, as excitability just takes up too much energy. However in the summer of 2012 things changed. My health started to improve, beyond what 18 months previous, I thought was unimaginable and when my health started to come back so did Mad Hyper Sam. And I was lucky enough to get to experience what it was like to do things for the very first time again. In 2012 I once again got to experience coming of age, in my year of second firsts.
29th May 2012 – The first time I went for a run
23rd June 2012 – The first time I had a drink to celebrate my sister and Jack’s wedding.
2nd July 2012 – The first time I could drive a reasonable distance without my legs feeling like they were going to fall off.
17th July 2012 – The first time I went for a bike ride and god it was bloody hard.
25st July 2012 – The first week I had without going for any Physiotherpay as thanks to the good people at Glasgow Royal Infirmary I was well enough to be discharged.
26th July 2012 – The first time I danced till my feet hurt at Faith and Adams wedding.
14th August – The first time I went hiking with my good friend Sandra Bullock, even if she did have to drag me kicking and screaming. But you know what? I was slightly tired the next day but nothing I couldn’t handle.
2nd Sept 2012 – The first time I done a bungee to raise money for the Sam and M.E support group.
28th Sept 2012 – The first time I actually turned up to a graduation ceremony and never just got the certificate through the post. To celebrate completing my COSCA Counseling skills Certificate at Caledonian University.
26th October 2012 – The first time I never spent a birthday unwell
27th October 2012 – The first time I went to a theme park
14th November 2012 – The first time I got proper wrecked and decided it was a good idea to walk from Glasgow to Moodiesburn. Luckily I had a friend who decided this was not a bright idea
And you know what it felt like? It felt like for the first time in years I was living and not merely existing and I enjoyed every minute of it.
Title taken from the song “First day of my life” by bright eyes
Tags: Bright eyes, Chronic Fatigue Syndrome, first day of my life, first kiss, first love, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Today we have a new post from a guest blogger. Todays post was written by Laura AKA Patti Smith, a long time M.E Sufferer and Board Member of the Sam and M.E Support Group. Laura has been coming to the group from day one and is an integral part of the running and organising the group along with being at the forefront of our campaign for charity status.
I was inspired to write this after receiving a message from a fellow M.E. /C.F.C sufferer and a member of my support group let’s call her calamity Jane.
I received a text message saying “Help I am the designated driver at a night out and I’m Knackered”
My first thought was to ask where night out was happening, (as this would determine where it would be possible to go for a nap). I consider myself an authority on napping as I have been M.E/C.F.S napping since 1998. Turned out a dance in a hotel Ok, so there would not be a bed with coats on to hide under and have a nap (this I will explain later). So I then advised her to approach her friends and tell them you are going to the car and when they needed a lift home to come out to the car. I then said go to the car turn the engine on (to prevent her from freezing as your body temperature drops when you fall asleep) and recline the seat and using a coat to cover you have a nap while you wait for everyone else to finish having fun.
So here are a few tips on how to achieve a nap no matter where you are.
- House party: the coats on the bed (as mention before)are a great place to nap because it is comfortable muffles the noise from the party and when everyone is leaving they will find you under the coats and wake you up to go home.
- Weddings: find out which room the bride and groom have booked for their honeymoon (watch out for petals on the bed) and have a lie down in there. You will be awakened in good time to catch the organised bus home and you won’t miss the bride and groom leaving!
- Workplace: now there are a few depending on where you work!!!!
Sales Rep, Clothes Boutique, Office, or House person.
I myself had a perfect set-up (or so I thought) of how to have a nap while I was employed as a field sales rep. I would find myself in need of a nap suddenly as anyone with ME/CFS will understand so I would need to find a parking space ASAP. This time I parked in a housing estate found a place where I thought looked like it was not busy without any double yellow lines. Here is what happened;
I had napped in this way many times so I had tried and tested a few methods and found this particular one perfect!!!!!I got my folder out and opened it up, balancing it on the steering wheel then placing my elbow on the window edge (not the arm rest as in the past I realised that when I nodded off and my hand slipped from my chin I duntted my head off the window ouch!!!!!!) So elbow on the window edge and placing my palm under my chin this held my head up even when I nodded off and if my boss passed by It would look as if I was working on my folder……This particular day I had set myself up as described above. It was a bit chilly so left the car running and turned the heater up; I nodded off in my “perfect” position. But with heater on I must have fallen into a deep sleep I was suddenly woken by a chapping on the window lifting my head off the steering wheel with slobbers running down my face I saw two wee old ladies with distressed looks on their face I rolled down the window and they looked at me and said “ you’re not dead” I looked at them and rather indignant said “no I was sleeping” I realised that the little old ladies must have approached the car terrified maybe they were neighbours telephoning each other and plucking up the courage to see if someone had committed suicide at their front door… here was I just having a ME Nap!!!!!!!
- Workplace clothes shop; This relates to another fellow M.E. sufferer and member of the support group let’s call her Lady Gaga (this is Sam Btw). My suggestion for having a nap here would be to tell your manager/work colleges that you have to do a stock take and you will be unavailable for an hour. Go to stock room find the sales items which are due to go out (they will already be creased so won’t matter if you lie on them) and make a nice bed with them and have a nap. Now after your nap return to shop floor and become irate at being unable to sort the stock room out and make everyone take a turn to sort it out. Adding those sales clothes really need fixed.
- Workplace office; (Using similar method to number 3 above) Position a book /folder on your desk and balancing your had on your chin have a wee nap making sure you do not have a hot coffee cup nearby just in case you do the sleep nod and spill the coffee scalding yourself.
- House person; You might think this would be the easiest of all naps to take but a everyone knows being at home your work is never done!!!!!! Also we do not want to been seen to be lazy…. So in order to get a nap in the house it must be a precision operation this comes with two options.
(a) No kids; You need to make sure you have the bottom floor of the house tidy for when hubby/partner comes home (the male species notice only the route to the telly, fridge and toilet so make sure this area looks tidy). Take all mess upstairs to a room and close the door make sure there is a coffee cup or tea cup all ready for his/her return and remote is to hand. Then you can go to the luxury of your own bed set the alarm for 15 minutes before he/she returns and have your nap. When he/she comes through the door allow him/her to get his tea/coffee and sit in front of the telly then wander down stairs with a pile of clothes saying” oh! I haven’t stopped all day” and put a washing on. Sorted!
(b) With Kids; This is a bit trickier as we all know if a kid knows a mother is around they will just shout and shout until they get a response. So! you need to set the hubby/partner up with remote control, kids need to be sat in front of a DVD/game console with enough supplies of crisps and juice for at least 30 min’s and then you say you’re going for a bath (this will give you 20 min’s tops of peace if you’re lucky!!!!) Make sure the bath is not too deep (prevent drowning) then get a bath pillow and prop your head up and take a nap you will not need an alarm for this nap as husband/partner will stir when programme is having an advert and kids will run out of supplies so your guaranteed not to drown or over sleep.
I know 6 (a) is a bit sexist but hey these are tried and tested and it will work with all partners of any gender I promise.
The following are not tried and tested but think they might work.
- Cinema; Easy 1hr and a half nap (fanbloodytastic) make sure you don’t sit next to a chatty person!!!!!!!!
- Church; As above!!!!
- Old folks home; No one would notice having your nap as most of the residents will be having a nap too so you will blend in he he!
10. Bed shop; I like this one would the sales assistant dare wake you up? The way I see it would be a great advert for their beds when other shoppers come in.
Ok now as you can see there are many places and situations where us M.E/ C.F.S can get a nap without disturbing or anyone noticing you’re doing it.
So let’s go we can nap anywhere, anyhow, anytime…
*All material on the Sam and M.E site and Blog is copyrighted. Unauthorised use of any material will be not tolerated.
Tags: Chronic Fatigue Syndrome, Lady Gaga, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
On Monday Laura and Lynsey were at the meeting for ME/CFS NHS Review representing Sam and ME, below is a report that contains information given at the meeting.
We would just like to say getting a bunch of people including a GP representative, ME/CFS sufferers, and Lanarkshire NHS together was a step forward for sufferers. We are getting noticed and acceptance of this debilitating illness is a step in the right direction. We look forward to seeing the report for changes that are needed to help us.
ME/CFS review event Kirkland hospital medical education training centre fallside road Bothwell
The purpose of this meeting was to work with the ME/CFS NHS commitment, The role of the GP, the patients experience and to work in groups to capture the current care provisions available to Lanarkshire patients seek to understand and improve where possible.
We heard from Kenny Small NHS director of human resources, interim lead south Lanarkshire community health partnership
Ageing population, increasing incidences of long term conditions, public health challenges owing to lifestyle choices, workforce pressures, and constrained resources
He outlined their commitment to ME/CFS suffers as follows
- To circulate the Good Practice Statement to all GP’s and relevant specialist services in Lanarkshire
- To review the current support available to people diagnosed with ME/CFS
- To map these against the Scottish good practice statement 2010
- Consider any gaps and shortfalls in services
- Work with key stakeholders and informants consider what improvements we can make to how we currently support patients.
The NHS quality Strategy 3 quality ambitions
- Person – centred – Mutually beneficial partnership between patients, their families, and those delivering healthcare services. Partnerships which respect individual needs and values and which demonstrate compassion, continuity, clear communication and shared decision- making.
- Safe – NO avoidable injury or harm from the healthcare they receive, and that they are cared for in an appropriate, clean, and safe environment at all times.
- Effective – The most appropriate treatments, interventions, support, and services will be provided at the right time to everyone who will benefit, with no wasteful or harmful variation.
DR Chris Mackintosh Associate medical director south Lanarkshire community health partnership/GP lead for neurology.
He told us of what is going on in NHS Lanarkshire
- Estimate of at least 0.2-0.4%
- Anyone, Woman aged from 35-55 years NHS Lanarkshire 1000-25000
- The Who; Myalgic Encephalomyelitis (ME) including post viral fatigue syndrome (neurological diseases) ICD 10 G93.3 (code)
It is helpful to create a list of all current symptoms as ‘ Polysymptomatology’ is a significant diagnostic clue.
- Exclude: other possible causes of fatigue
- Enquire: about travel, tick/insect bites, unusual infections, drug and alcohol use
- Review: Current prescribed medication
- Height & Wieght (obesity, glandular disorders)
- Standing and lying blood pressure (Addison’s disease)
- General medical and neurological examination
- Medication – from GP
- Medication – Following advice
- Cognitive Behavioural Therapy
- Graded exercise therapy
- Relationship with GP practice
What’s going on in NHS Lanarkshire?
- For assistance with management where there is diagnostic doubt
- Pathway to diagnoses
- Will need to be modified appropriately by NHS boards, to take account of local services development and provisions.
Tony Fitzpatrick change and innovation manager interviewed 8 ME/CFS sufferers to find out the following:
- When they first became ill
- How they were investigated and diagnosed
- Who made the diagnosis
- What support has been available to them
- What helps and what doesn’t
Our aim was to:
- Listen to patients from across Lanarkshire
- Learn from their experiences
- Share learning
- Compare their experiences against the Scottish good practice statement on me/cfc (nov 2012)
- We asked GPs (Lanarkshire ME support Group) to identify patients willing to be interviewed
- We made appointments to meet patients in their homes
- We wrote down their stories
- We asked them to check that we got it right
What we learned
Each patient’s experiences are unique – there are similarities and differences.
ME/CFS has a major negative impact on quality of life – the condition affects daily activity, employment, relationships, self esteem…….and more.
But we didn’t learn anything about diagnostic practices since the good practice statement was issued in 2010
We also learned
Some people do not agree with the Scottish good practice statement on ME/CFS (Nov 2010)
- Having a supportive GP makes a difference
- Patients become experts
- Patients progress to self management
- Patients access complementary and alternative medicines.
- Good practice statement on ME/CFS (Nov 2010)
- To what extent do these experiences reflect good practice What are the gaps and shortfalls
- What improvements can we make to how we currently support patients
- We all split up into groups to discuss the good practice and experiences with NHS
- What currently exists
- What works well
- What doesn’t work well
- What does not exist/is not available to people in Lanarkshire (possibly provided as a tertiary service in NHS greater Glasgow & Clyde)
What improvements can we propose to how we currently support patients
Headlines form group feed back
- GP awareness is essential
- Clinic for sufferers
- Early diagnosis
The information gathered today and writes up a report of the workshop to reflect our current provisions any gaps and improvement proposals
Present the report to NHS Lanarkshire modernisation board.
Tags: Chronic Fatigue Syndrome, M.E, ME, ME/CFS NHS Review, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & M.E Blog, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
Today I am in a reflective frame of mind. Possibly because I have just realised it’s been exactly three years since that fateful trip to Manchester that resulted in my legs giving up on me.
It’s strange because looking back now, it seems as if it all happened to someone else. Don’t get me wrong, I still remember vividly what it was like to struggle to walk the shortest distance to the toilet, relying on walking aids and wheelchairs, the muscle pain that became all too familiar and the pitiful look in strangers eyes when they seen a young girl with walking sticks struggle down the street. But now my life is so different. I get to live life instead of just getting by, and I mean LIVE. I don’t do things my half and take full advantage of every opportunity presented to me. I work full time in a job that I love, which at times is very physical and touch wood so far I have been fine.
Last year for 6 months I took a job in a Call Centre, as I wanted to work full time but not be on my feet 24/7. Anyone who has ever worked in a call Centre will know how soul destroying it can be. I hated it. And I was very vocal to many of my friends about it; to the point they were all like, “Sam I think you are over exaggerating just how bad this place is.” But to me the issue wasn’t sitting on the phone all day pretending to be nice to folk who were arseholes with no manners. It was the fact that I had worked so hard to get back on my feet, and I hadn’t given everything I had, to then spend the next few years doing something when the only passion I had for it, was hate. So I got out faster than a speeding bullet, took the risk of doing something more manual and it paid off. And to top it all off in September I am starting another degree relating to my new chosen career, as I said I don’t do things by half.
I get to go out with my friends, party and do crazy adventures stuff and not have to think all the time, “ will this put me in my bed for a couple of months?” and my legs are feeling better than they have ever been. The pain has gone, I exercise and I don’t mean low impact gentle stuff, I run, hike, swim, do yoga, fly. Well I don’t actually fly I just wish I did. Anything a healthy person does I can do, my life is once again limitless. Well that’s not technically true, I probably couldn’t be a drag queen seeing as I don’t have a penis but you get what I mean.
I wouldn’t say I no longer have M.E it still rears its ugly head now and then, especially when I over do it but its now very mild. It’s all about “everything in moderation, even moderation”. I listen to my body, slow down when needed and if I need to stop and rest, I don’t just push through.
A lot of people ask me, “Sam what’s your secret? How are you now doing so well?” and honestly I don’t have one, I just consider myself extremely lucky to have amazing friends and family that helped me through the bad times. I met I boy I knew from school in the summer, whose mum has ME and he said to me, “You may be doing great now but is a relapse not eventually inevitable?” The thought that I could go back to how poorly I once was, scares me everyday. Every time I am overly tired, my body aches or are I am just feeling under the weather, I think is this it? I know I was very positive and coped extremely well the last time, but I am under no illusions that if it all happened again my positive, can do attitude would not be there to push me through a second time.
But you can’t go through life worrying about what may or may not happen. I could get hit by a tram before my ME ever has a chance to floor me again or I could be one of the few a sufferers who continue to get better until one day they don’t have ME anymore.
A few months ago I bought a new car, after having it for 3 weeks I was driving on a country road singing along to Adele at the top of my voice when a stone came up and cracked my windscreen. When I told my mum about this she said, “Jesus Samantha! You must be the unluckiest lassie I know. I swear if it wasn’t for bad luck you’d have no luck.” I remember at the time thinking that’s strange, because thinking back to where I was and knowing where I am now, I feel like the luckiest girl in the world.
Tags: Chronic Fatigue Syndrome, M.E, ME, myalgic encephalomyelitis, myalgic encephalopathy, Post Viral Syndrome, Sam & M.E, Sam & ME, Sam & ME Blog, Sam and M.E, Sam and M.E Blog, Sam and ME, Sam and ME Blog, Sam McInnes, Samantha McInnes
- Please can any suffers take a few minutes to fill this in :) in fact, it might only take 30 seconds. Thanks. http://t.co/GcBPi0ScaW, 12 mins ago
- RT @DoctorChristian: 2) robust evidence to show it is a physical disease with significant abnormalities to brain, muscle and immunity. More work needed though!, 5 hours ago
- RT @DoctorChristian: 1) Distinct changes in immune systems of patients with ME/CFS, inc increased cytokine levels in early stages of the disease have been found., 5 hours ago
- Interesting article, definitely worth a read http://t.co/fzbMJdVHKx http://t.co/cMuRzgl28Q, Feb 28