Introduction

At the end of August 1999, when I was supposed to be on holiday with Frood, we decided to go on our first long distance walk. I was really looking forward to it. On the second day we did 10 miles in the morning, and I was paralysed. The pain in my back was intense, I was running a fever and I was very, very ill. We went back home the next morning and I spent the next two weeks and then some suffering from a sore throat, dizziness, nausea, falling over, visual problems, deafness in my left ear, fluid in my left ear, and not being able to eat. I was told I had an ear infection and was given first a course of antibiotics and then some decongestants. I continued to deteriorate and started suffering from cognitive impairment and other neurological symptoms. For weeks I was crying from sheer frustration and fear.

The doctor told me eventually that he thought I had migraines, and gave me beta-blockers and valium. At this point I finally got to see a consultant - a gastro-enterologist for some reason, not the neurologist I wanted. He diagnosed chronic fatigue, but said I could have an MRI just to be sure. I watched my foot reflexes fail entirely (Frood spent about an hour the other night playing with my feet because they won't react any more) and decided I couldn't wait for an MRI.

In the meantime, I read up on ME at the web site of the ME Association and in their literature. I kept a symptom diary, which is really more of a protracted ranting whinge full of disgusting self-pity and none of the black humour that should be in there. I told myself that ME is a serious illness that could account for all of my symptoms, even though I found it difficult to believe.

Cats sit on people who don't like cats. ME afflicts those who think it only happens to fluffy yuppie people.

I'm not terribly good at being introspective, and I didn't enjoy keeping the diary, but it was better than whinging to people about things all the time. Also, the one thing I can't do for the early entries that were written long-hand, short of scanning the pages, is show the variation in handwriting and numbers of spelling mistakes. I took them out for some reason when I put it into html, but the sentence structure is the same. I was making notes, not writing prose. I keep the prose for my other notebooks.

By June 2000 I still hadn't been tested for FMS, but you can bet your shiny arse that I don't have ME. My gym regimen put paid to that idea. Finally I was tested for FMS late 2000, after changing my GP, and told that I did have it. I was then sent to see a psychologist, who attempted to get me to undergo a course of Cognitive Behavioural Therapy. The leaflet told me nothing I didn't know already. After arguing with said psychologist about the mechanics of it all, and working out that she thought it was just stress, I gave up on the medical assistance and decided to sort it out myself.

It can be done. Once you make that decision to take control of your illness, possess it, accept it, and do something about it, things get easier. At the end of the day, if the doctors can't help you, then it's up to you. They are only human, they don't know everything. They may have undergone years of training and be experts, but they don't live with the symptoms, and no matter how many patients they have seen, they can't understand what it is like to have this disease unless they have suffered themselves. I haven't met a doctor who has. If what they are telling you doesn't feel right, don't do it.

One thing they told me that has turned out to be true is that it doesn't matter, at the end of the day, what is causing the problem. What is important is finding a solution, finding a way to cope. In finding a solution you may well work out what it is that is causing the problem. It's also important to remember that everyone is an individual and reacts differently. If you find something that makes you feel better, go for it. It doesn't matter whether or not this has worked for others in similar situations.

Here you will find details of how I manage, how I have turned things around and got myself back on my feet. I cycle 120 miles or more each week, I go to the gym, have a fairly high-pressure job and am healthier than most of my colleagues. I have to work at it. I can't relax and do whatever I want to do, eat whatever takes my fancy, or stay in bed all day. I have to be careful not to overstretch myself - but this doesn't mean I can't push myself and get better and better.

Everybody, whether they have a disease or not, has to work at keeping fit and healthy. People who have FMS just have to be more aware of this part of their lives. The most important thing you will ever learn in managing this illness is how to listen to what your body is telling you, how to be aware of its needs, and how to provide what it requires. Once you learn that, you don't need a doctor to advise you.

I hope someone, somewhere finds this useful, even if nothing that has worked for me works for them. If all this part of my site does is provide inspiration for people to go and find their own solutions, I will be a very happy hippy.