I’ve been meaning to write this since May, but other issues intervened. A friend asked me to contribute a piece of work to an exhibition raising awareness of “ME”.
Interesting: I have endured 2 bouts of ME, the first lasting 4 years, the second 6 years. That’s 10 years of my adult creative life, yet I could only offer 1 painting on the subject.
ME, short for “Myalgic Encephalitis” (‘muscle-pain associated with inflammation of the brain’), is a nasty and controversial disease. Most doctors, including most consultants treating the illness, deny its existence. To make it easier to deny, it’s been lumped together with a bundle of lesser conditions into a syndrome: “Chronic Fatigue Syndrome” (CFS), the defining symptom being tiredness.
The current treatment is to tell patients to go to bed on time, eat proper regular meals, and do something enjoyable every so often.
The first attack was in 1982, before the term “ME” had been coined, still less the umbrella “CFS”. It was the end of my first degree year, I’d been having trouble sleeping and was feeling exhausted, but I really wanted to go along to the Stonehenge festival after my exams.
I was ill-prepared for the scorching heat, with only a tiny water-carrier to fill from the single stand-pipe, at which there were permanent 1 hour queues. The first day was a continuous round in the water queue –fill the container, drink as much as I could, drench myself, return to the back of the queue …
The first night, after Hawkwind, a chapter of Hell’s Angels turned up at 3.00 am and proceeded to tune their bike engines outside my tent. I just packed up, walked away, and hitch-hiked to my girlfriend’s parents in Lancashire. When I got there, exhausted, heat-stricken, I went down with ‘flu contracted from a fellow water-queuer.
A week later, as the fever lifted, I still wasn’t well – I couldn’t wake up properly, sleeping 16 hours a day; all my muscles ached; and conversations stopped making sense after a few minutes; when I tried to read a book or watch telly, I’d start getting panicky, my pulse would start racing, and I’d have to put the book down, or leave the room. Even radio was only bearable for about 10 minutes. I found I couldn’t walk far – a couple of hundred yards and I’d be desperate to return home and go to bed. I was suddenly intolerant to several foods: bread, butter, cream, liver pate, all made me feel suddenly, and extremely, ill.
Initially the doctors were saying: “it’s just a virus, it’ll get better in time, take it easy for a few weeks”.
So I did, and as University term started, I was well enough to go to lectures again. But by mid-afternoon, all the symptoms would be returning – aching muscles, feelings of panic, extreme tiredness, inability to think straight or communicate effectively.
I was treated as a head-case. After a year, the doctors were recommending I visit the psychiatrist, family were suggesting anti-depressants (I was depressed, as I never had enough energy to go out evenings or weekends), girlfriend was telling me to pull myself together.
The symptoms gradually abated over the next 3 years, until I was back to climbing mountains and going down pot-holes, and was thinking straight enough to be researching for my doctorate.
Then it all happened again, 4 years later – on a cycling holiday: again I wasn’t sleeping properly, fiercely hot day, not enough water, bad heat stroke, rounded off with a dose of ‘flu. Stupidly – insanely – decided to cycle home: Cambridge to Oxford.
By this time, “ME” was widely known, and I’d met other sufferers. There was even an ME society in Oxford. But I never joined – the members seemed to define themselves through their illness, whereas I defined myself through my love of nature, people, and creative work.
Which is why I never used the illness as a subject. The one painting I did was just a sketch, a bit of life-drawing/self-portrait practice. I just added the “energy flow” in at the end, as a kind of afterthought.
Research into ME: Outbreak in Iceland – Polio virus implicated; Outbreak at Royal Free Hospital – “Mass Hysteria”; Organophosphate (insecticide and nerve gas) poisoning implicated; NLP: self-obsession, because the letters m and e spell me; psychiatrists: a form of depression; virus contracted from mice recently implicated; acupuncturists: lack of elemental fire. Only treatment that actually speeds recovery: rest.
