User:LynwoodF/ME/CFS – my experience

This is a slightly revised version of an article written for the Richmond & Kingston ME Group newsletter, Autumn 2002.

I remember where I was when Kennedy was shot, but I am unsure of the date. Tuesday 13th July 1965 is much more clearly fixed in my mind. I was working in Paris, it was the eve of a public holiday, and I had never felt so ill in my life. I later learned that I had a particularly nasty variety of glandular fever and, although I soon got over the acute infection, I have never been fully well since. I have had a host of symptoms, but the most persistent are a sore throat, muscle pains and a lack of stamina.

By 1988, with the medical profession pronouncing me fit, I thought I should go to my grave an undiscovered medical curiosity, but then, by chance, I saw a television programme in which a man described the illness he had had for 20 years. He was describing in detail the illness I had had for 23 years. I joined the ME Association and discovered how many of us there are.

In the early 1990s I was given a diagnosis of CFS, which was initially disappointing, but served well in getting me my benefits.

Three careers have collapsed and the fourth is part-time and unpaid. However, over the years I have learned what I can and cannot do, how to pace myself and what sort of diet suits me.

I have little specific advice to pass on. Much of what I discovered for myself is common knowledge in the world of ME. What I would say is that if you cannot do what you want to, life is more enjoyable if you learn to like what you can do. I go to the theatre and concerts. I have carefully paced days out. In 2002 I gave a lecture on my special historical interest and I appeared on a radio quiz show. Mind you, I came last, but it was an interesting experience.

I have been relatively lucky. I never got round to marrying, but my family have been supportive. And being ill soon teaches you who your real friends are.