My truth about ME/CFS

I never thought there was anything I couldn’t do that I wanted to. It may take hard work and perseverance but if I wanted to be a sound artist, a singer, a dressmaker, a scientist, then I could do those things. I can’t do those things. These are the things that give me a reason to live and feel fulfilled and I can’t do them, at least to the level I want. The first three are hard, the last one is heart breaking.

My heart has been broken this year, truly broken by the realisation that having ME/CFS is damaging my brain and body so much that I can’t go back to being a scientist, not now and maybe never. I can bob along being a medical writer and it’s hard as fuck at times but I find a workaround when it is. And why should I complain, it pays me well and I can do it part time and mostly from home. Why should I complain. But being a scientist to me is the same as being an artist or a singer or a dressmaker, it’s not what I do, it’s who I am. I can’t be me.

Having ME has robbed part of me and coming to terms with that is devastating. I am devastated by this especially because part of the reason I wanted to go back in to science is knowing that I have an inflammatory brain disorder and knowing how I can contribute to understanding, and hopefully alleviating, that. This is the subject I know best, this is what I studied and published papers on, this is what I have a masters, a doctorate and post-doctorate experience in. But that knowledge, and the means to action it, is on the highest of high shelves and currently I have no means of climbing up to get it down again.

So I try this drug and that drug and this diet and that one. I try exercising, I try relaxing, I try drinking and not drinking, going out and staying in. And yes, I’ve done CBT and dug deep into my soul to discover if I have a form of Victorian hysteria caused by masking my emotions and that actually I want to be ill and it’s all just a manifestation of me not being able to come to terms with some past trauma I can’t remember (seriously, this is almost all of what’s currently offered on the NHS). And so far nothing, not one thing in 9 years, has really worked, some things have helped, but I am not yet better and I don’t know if I will ever be that person who ran a half-marathon, cycled 14 miles a day, swam, did yoga, danced with abandon, was able to be in love.

I am almost unbelievably pissed off about this on a daily basis and trying to accept that the rest of my life may be spent feeling like a jet-lagged, hungover half-life with a cold is very, very hard to bear. I bear it, but fuck me, it’s very, very hard. I cry a lot, most days.

I get pleasure, truly great pleasure from so many things. Music, friends, art, a fine day, a rainy day, TV, radio, film, food, sex, reading, walking when I can, not doing anything when I have to, creating. You see me out and that smile is real, beautifully real, and you may not know that I am in pain and am keeping standing, or even sitting, with a huge amount of effort because I don’t want you to know it, I want to live that lie for a night. I don’t want to always answer “how are you doing?” with “I feel like a jet-lagged, hungover half-life with a cold.” I am not someone who actually wants to be ill.

I consider myself lucky, so many people with ME have a life confined to the bedroom and for those I weep. I am lucky to have a form of this medical condition that only confines me to the sofa some of the time, that only sees me lying on the floor in the loos at work or when out socialising some of the time, that only means I miss things I’ve bought tickets to occasionally. The last bit sounds like I’m complaining (I probably am) but I am also aware that I do more than most. I live my life to a high degree and am grumbling that I can’t sustain that but I do want it all. I want to go out when I can, make what I want, sing more and more, but above all else, I want to go back to being a scientist, I want to go back to being me. Fuck you ME, fuck you.