Fatigue as a word doesnât begin to describe the horror that they casually call Chronic Fatigue Syndrome or M.E. - Myalgic Enephalo Myelitis
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 wasnât too worried.
I had a high fever and then a low grade fever and felt really rotten and it simply didnât go away. Itâs 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 Oâ levels, at 16, doing two yearâs work in a year but was then so poorly during my 6th form that I largely blew my âAâ 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 exhausted, confused and miserable that I couldnât 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 itâs like my immunity fails. I canât 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 canât 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 sickness 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 â the problem with this description is that I donât think it really explains it, people donât really remember what that level of awfulness feels like. The brain has a gift for not really storing the memory of physical symptoms â 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 doesnât really scratch the surface. (Try thinking of what a strawberry tastes like â really imagine it, hard as you can. Now eat a strawberry. See?)
The terror of finding you canât 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 think I had 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 wouldnât 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 two people part time. 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 isnât very much. But I live in hope.
I donât 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 doesnât mean it wasnât and isnât 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 am writing now because I feel awful, my hands ache the tears of weariness and anguish are running down my face. The brain fog is ghastly and I feel so alone and isolated. My next major birthday I am 54. I have not learned to scuba dive. I didnât 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 was from the depths of my being.
That the scream was silent is partly because I donât have the strength to scream and partly because I have no words. It is not just me â 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 Iâm still housebound/bedbound dealing with the consequences. Applied for disability benefit got a home visit and didnât score a single point even after 40 years I am not believed. Too ill to fight for it and terrified about the future. My incredible Mum stepped in again to take care of me when this latest flare happened. I have no words to express my combined gratitude and shame for being this kind of endlessly needy daughter. l when, at this age I should be taking care of her.
Originally Written September 2012.
Header Artwork originally by me aged 15.
Added to in 2015 after my marriage broke up.
Updated July 2018 and again Feb 2020 for #MEAwarenesshour on Twitter every Wednesday share relevant content with the hashtag to help raise awareness.
Reposted July 2020 to send to @OxMEDiscovery
