“Hope Lies in the Darkest of Places”

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, climb Mount Kilimanjaro and 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, “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

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