About me and M.E.
Fatigue as a word doesn’t begin to describe the horror that they casually call Chronic Fatigue Syndrome or M.E. (Myalgic Encephalomyelitis).
I was 14 in 1980 when I contracted a virus known then as glandular fever. I was seriously less than chuffed… I was an 800 meter runner. I was a member of my town swimming club, doing competitive swimming and planning to do scuba diving training (I desperately wanted to be a Marine Biologist). I played hockey and went on my bike to the athletics club on a Saturday. I had a lot to do, but I had friends who had had the illness, a cousin who had been very ill and had had a long recovery over some weeks, so we knew what to expect, and I wasn’t too worried.
I had a high fever and then a low grade fever and felt really rotten and it simply didn’t go away. It’s such a simple thing to write down but the reality was and is horrific for my family as well as for me.
I was finally diagnosed with M.E. (myalgic encephalomyelitis) when I was 22 years old. In the intervening time I had had nearly two years off school. I got O’ levels, at 16, doing two year’s work in a year but was then so poorly during my 6th form that I largely blew my ‘A’ Levels at 18. I spent some time in the metabolic unit at my local hospital as they tried to work out what was wrong, with no success. It was frightening and disappointing for me, and for my family. I was so ill, exhausted, confused and miserable that I couldn’t even fill in the university applications never mind thinking of packing and going.
A pattern developed which has persisted until now, forty years later. I would start to rebuild my life out of the illness and then catch a bug or even just overdo it a little and be destroyed by it. The illness seems to be something to do with a defunct immune system. Some bugs, colds, flus etc. I catch and get over the same as other people, some I catch and it’s like my immunity fails. I can’t get rid of the bug and the symptoms persist for months and months. In my body it feels like the immunity starts to triumph in one part of the system, but is overwhelmed in others. Like chasing dry rot round an old house. The painful joints start to feel better and then it flares in my digestive system and I have nausea and other digestive symptoms. Or the headaches die away and I feel so physically weak, I can’t stand steadily, lift a kettle, turn a tap on, hold a pen. Not just tired, but sore and stiff and lacking control. I have had long periods of being incredibly fatigued cold and hungry. Mind numb, sluggish, forgetful, time concertinas, days, weeks pass in weird disjointed forms, sometimes I can barely speak. Summer days spent in low light indoors with two duvets and a hot water bottle, the central heating on, the fire lit, still freezing cold.
Every year or two something happens which knocks me down into bed for months, sometimes years. After the initial illness the convalescence is unending. I have described it as being like the worst flu and hangover you have ever had combined and lasting for months – the problem with this description is that I don’t think it really explains it, people don’t really remember what that level of awfulness feels like. The brain has a gift for not really storing the memory of physical symptoms – pain discomfort etc. We remember as an intellectual exercise not as a visceral experience. Even if you can vaguely put together a sensation of what that might be like it doesn’t really scratch the surface. (Try thinking of what a strawberry tastes like – really imagine it, hard as you can. Now eat a strawberry. See?)
The terror of finding you can’t roll over in bed on your own, the humiliation of having to have your personal care taken care of by someone else, the days when all the radios in the world are on in your head, all light is too bright, all sound is too intense, the indignity of being questioned like a criminal in benefits offices and doctors surgeries. I think I can now write openly about all of this because I have nothing left to lose.
I have always tried to hide the damage the illness does particularly to my mind because I was afraid of a diagnosis of mental illness. I had an acquaintance who had the same symptoms as me when we were in our twenties, she ended up on a ward in our local mental hospital. They took her drawing materials away from her. They wouldn’t let her write. I fear this kind of thing more than anything.
I have not been idle. I have not been a scrounger. I have a tiny website design business. I work as much as I can always from home and now employ talented freelancers. I am a self taught artist and designer and love my work when I can do it and I do it as much as I can. Just at the moment that isn’t very much. But I live in hope.
I don’t have any children. We sat down and thought about it. It seemed that to bring a child into a house where their mother could spend long periods unable to look after them was a bad thing to do. We made the choice some years ago and given how my health has been subsequently we were right. We made an adult choice and we live with that every day. It doesn’t mean it wasn’t and isn’t painful. I say ‘we’ but my marriage broke up after 23 years due in no small part to the effect of my illness. When we married I was 25 and the prognosis was that the illness would lessen and in at worst 7 years it would be gone. I’d grow out of it.
I wrote this because I felt awful, my hands were aching, weariness and anguish throughout my being. The brain fog is ghastly and I felt so alone and isolated. The birthdays come and go. I have not learned to scuba dive. I didn’t become a marine biologist. In some ways it would not be over dramatic to say this illness has ruined my life. Certainly it has ruled it, changed it, made it unpredictable, difficult, at times nearly unbearable.
I saw a child on the TV the other night, recently diagnosed with ME/CFS, he is lying there, another little grey shape in a bed (we all go that way) and I saw the desperation in his mother and recognised myself and my mother. The silent scream of horror I had at seeing it all happening again to someone else was real.
We are all in this together #MEAwarenessHour
That the scream was silent is partly because I don’t have the strength to scream and partly because I have no words. It is not just me – the English Language has not got the words.
I had a really bad flare which put me in hospital unable to walk in Oct 2018 and I’m still housebound/bedbound dealing with the consequences. Applied for disability benefit got a home visit and didn’t score a single point even after 40 years I am not believed. Too ill to fight for it and terrified about the future.
The grotesque horror of #LongCovid has been heartbreaking. Watching history repeat itself, seeing young people struck down unable to get up again like me is awful. Compounded by a proportion of the media and the medical profession claiming it is idleness or benefits scrounging again. The good news seems to be that this is such a large disabling event that the research is starting to happen and with the adjustment in the NICE guidelines and the work being done to raise awareness there may be a glimmer of hope on the horizon.
I paint when I can as an escape. Colour and line and forms of loudness rollicking their way out into the world with passion and clout is what I like to think I would have done had life not got in the way.
Every week I use a piece of my art as a backdrop to the digital flyers announcing #MEAwarenessHour on Twitter. This is tiny persistent activism, attempting one tweet at a time to get the weakest of voices heard we tweet #ME news and advice and now frequently include #LongCovid as it is abundantly clear that these Post Viral illnesses are the same kind of debility from a common route.
Originally Written September 2012. Added to in 2015 after my marriage broke up. Updated July 2018 and again Feb 2020. Reposted July 2020 to send to @OxMEDiscovery Reposted now because I’m supporting #meawarenesshour on twitter.