The day things changed - 50 years on



This is a piece which I prepared for publication on Facebook on the 50th anniversary of the onset of my illness.

Tuesday 13 July 1965 was the day my life changed. I lived in Paris then and worked for Lloyds Bank. That day was the eve of a public holiday, the fête nationale - they don't call it Bastille Day there. The office closed at midday, as several of the public holidays lasted for a day and a half. Whether they still do I know not. I was one of the last to leave the building and as I went down the back stairs, I felt so dreadful that I didn't know how I could stand the journey home. Just as I reached the staff entrance, a taxi drew up immediately outside and the lady passenger paid off the driver. The fashion house Nina Ricci was right next door and she might have been going there. I dived into the cab and it took me straight home.

For several days I stayed in, too ill to go out or to eat. My landlord and his wife were on holiday and I had no access to their part of the flat, and so I could not use their phone to let anybody know. At the weekend I managed to go out and eat a light meal in a local café. Then on the Monday morning I set off for work, but I felt pretty awful on the Métro. As soon as I walked into the office, the boss looked up and said, "You're going to the clinic." Apparently I was deathly white. The diagnosis was a viral liver infection and I later learned that it was a particularly nasty variety of infectious mononucleosis (glandular fever) which was going round Europe at that time and affecting mainly younger people. About a year later the cellist Jacqueline du Pré had the same disease, going on to develop MS and dying in her forties. I suppose I was relatively lucky, as I went on to develop ME and am still here to tell the tale.

After some time I had not fully recovered from my illness and I was finding life tough. So I decided to retreat back to England. For 23 years the medical profession could find nothing wrong with me and each time I had an identifiable ailment, I hoped that the treatment would deal with the long-term problem. However, the underlying syndrome persisted. Then in 1988, by sheer chance, I saw a television programme in which a man described in detail the syndrome from which he was suffering. He might as well have been describing my condition. I now had a name for it and I joined the ME Association. They were unable to tell me anything about living with ME beyond what I had worked out for myself over the preceding 23 years, but at least I had found some people who knew what it was like.

Now at a very early stage in my illness I had come to realize that I had a persistent viral disease and this was one of the theories that was put forward in the television programme. The alternative theory that the condition had a psychological or psychiatric origin seemed laughable to me. It still does, and my scepticism as to the value of CBT was confirmed when someone I know discontinued the therapy on the advice of the therapist. GET always struck me as downright dangerous, given the variability of the condition from day to day.

My earning capacity was greatly reduced by the illness and I eventually retired shortly before my 50th birthday. One consolation was that my income actually increased when I reached 65. Having been retired for nearly a quarter of a century, I have no idea how I ever found time to go to work, but I have had a number of voluntary jobs over the years. I still have five, but only one of them is at all onerous and it is by no means full-time. My leisure activities have been greatly curtailed in recent years, but I still have a lot of good friends, many of them people I met because of my illness. And throughout my 50 years of ill health I have had the support of my family.

AFJ


 * Link to older piece
 * Creatine/creatinine ratio and ME/CFS


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