Tuesday 8 May 2018

Stranded - M.E Awareness Week 2018

Stranded - M.E Awareness Week 2018

By Casey Douglass

© 20th Century Fox

Well, it’s M.E Awareness Week again and this time, I actually found out on the day it started, which was yesterday I believe. I usually miss it. CFS/ME is a horrible illness, and one that sees sufferers thrown on the rubbish heap by pretty much any institution they approach for help. The main symptom, for me at least, is the mind-numbing exhaustion. There are days I can’t read more than a few words before having to rest my eyes, and others where holding my head upright for long, or following a conversation, is beyond me. I have some better days, as in, not so shit, but these are rarer than a kind comment on a news article. Oh, and there’s no cure or effective treatment either, just to add some spice to the situation.

I’m a massive fan of The Martian. I love the film, and recently, have been enjoying the audiobook. If you only know the film, I recommend the audiobook/book as far more happens in greater detail. Anyway, Mark Watney is stranded on Mars and has to engage in much problem solving and using-your-own-manure-potato-growing to stand a chance of surviving long enough for NASA to rescue him. He draws great comfort from knowing that NASA, a multi-billion dollar space institution, is doing all it can to bring him home.

I feel a lot like Mark Watney, except in my case, “NASA” has decided that one life isn’t worth the cost, and has basically said “We can’t help you, but let us know if there is anything we can do!” A message I have heard time and again from the doctors I’ve seen about my illness. I had a few blood-tests (to exclude other things) and got my diagnosis, pacing advice, and that’s it. A diagnosis of CFS/ME is another way of saying “You’re ill, but we’ll be damned if we know what’s wrong.” So, worthless in many senses of the word.

I wonder if I was a Royal, say Prince Harry... If he was being treated on the NHS, I’d be willing to bet that they would exhaust a few more avenues before lumping him with a catch-all diagnosis that means very little. Time and again stuff happens that means it’s hard not to feel that my life doesn’t matter, that I’m a nobody and just not worth helping. CFS/ME has taken almost everything from me that made life worth living, and 18 years on (Yes, 18 fucking years), I find myself still reliant on my parents for shelter and food, and my so-called writing career earned me about £10 in the last 5 months. And can I get any help from anywhere, with my health, my work, or anything? Can I fuck.

Having the illness has led to much depression and anxiety about my life, stuff that no amount of CBT, self-help or medication seems to be able to dent. So the picture of Mark Watney sitting on his rock above resonates with me strongly. In his case, he has hope, no matter how small, that he might make it. My hope is gone, blown away by the winds on Mars. Here I am, sitting, waiting for my last breath, and for the struggle to end.