Category Archives: M.E from the other side

“Angus, Thongs and Perfect Snogging”

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.

Faith Evans.

 

*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 film “Angus, Thongs and Perfect Snogging”
 All content listed through the site is copyrighted. Unauthorised use, duplication or republication may result in legal action

“Glory Days” – a www.samandme.org production

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

 

*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 “Glory Days” by Bruce Springsteen.
 All content listed through the site is copyrighted. Unauthorised use, duplication or republication may result in legal action

“Sisters Are Doing It For Themselves”

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.

 

 

Sam & M.E: The Podcast

It’s the first ever Sam & M.E Podcast! Click the link below to listen

 

Sam & M.E Podcast

 

*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.
 All content listed through the site is copyrighted. Unauthorised use, duplication or republication may result in legal action