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My first introduction to M.E. is probably like most other people, through the media and their stories about "Yuppie Flu". Little did I know however when reading these stories that M.E. was going to play such a big part in my life, nothing could have prepared me for it, as the only way to know exactly what it is like, is to suffer from it yourself. There you are just going along and getting on with life, when all of a sudden it all stops and comes crashing down all around you, and the worst of it is, is the fact you don't know why. There's no reason for it as far as medical opinions goes, it just happens, and there are those of us who are just unlucky enough for it to happen to.
My story is much the same as many others who have M.E. One day I did not feel very well, the 1st of June 1992 to be precise though I remember it just like it was yesterday. On a day off work taking a wander among the shops in my town, when I suddenly got very feverish and sick feeling, my legs were like jelly and my only thought at that time was to get home and lie down. When I got home I was sick and suffering from diarrhoea, fair enough I thought! I've obviously got some sort of stomach bug, so I'll just drink lot's of liquids and not eat anything for the rest of the day, and I should be alright come tomorrow.
Well tomorrow came and I still felt hellish, but I had work to go to, so I left home and got about twenty yards from my house when my legs just went like jelly and I felt sick again. Obviously I couldn't get to work so I just went home. not feeling any better a good 4 hours later my Dr came to see me and suspected possible food poisoning, so I was signed off work for a week, told to rest and I should be fine in a week. That week came and went and I again made off to work the following Monday. I felt hellish through the whole walk to work, but I got there only to be told to go home as I looked awful. I had to arrange for someone to give me a lift home in their car as I knew there was no way I would ever get home if I had to walk.
What was wrong with me ? I had never felt like this in my entire life, not that I was ever one for being ill at all, the odd cold in winter perhaps but nothing major. I was one of those annoying people who just didn't get sick, had never been in hospital in my life except for the day I was born, I only saw my Dr a couple of times in ten years and then it was for minor complaints rather than any sort of illness. But yet here I was, I could barely walk, I was having giddy spells, and was getting a worrying pain in my chest.
Another appointment to see my Dr, and the only explanation he could give me was that whatever I had, was just not clearing up as quickly as it should be. Whatever it was it was not food poisoning as this had been proved negative from some samples taken the week before. A week later I still felt the same, the chest pains were getting worse, the sick feeling was still there, being giddy now seemed common place. Back to the see the Dr weekly over the next month, lots of blood tests, an E.C.G. but everything was coming back negative. I thought that the best thing for me was just to get out and about in the fresh air and have a walk, probably the first thing that most people would think of doing, (I later found out this was probably the worst thing I could have been doing) but each day I was walking less and less, as the effort was too much. Around late July my Dr asked me If I had ever heard of M.E. I laughed and said "What Yuppie Flu ?", he smiled and said yes but we don't call it "yuppie flu". He then went on to explain about it and said that it was possible that I may have it, though he was using the term Post Viral Fatigue Syndrome at that time
I stupidly thought at the time that it wouldn't last long, and that I would just have to let it pass, and then I would get back to work and on with my life. Little did I know what lay ahead. My condition deteriorated, I had given up on trying to walk anywhere, I had no appetite, I was getting bad headaches, my chest pains were getting more severe. Constant stomach and bowel problems, I was losing my strength, I could no longer drink alcohol, it had the same affect on me as poison would, so the chances of "drowning my sorrows" were none exist'ant. My confidence was beginning to wane I felt very much alone, even though friends and family were being supportive. I knew nothing about this illness and did not know where to begin looking, apart from that I did not have the willpower to look. I just wanted to lie in bed, I had no energy whatsoever, I was in pain and it was all beginning to get on top of me.
Around October that year my Dr admitted me into hospital to try and get to the bottom of it all. I was in there for a week getting every possible test under the sun, unsurprisingly they all came back negative. While there I came upon my first Dr who does not believe there is such a thing as M.E. thankfully he was the only one I came across, and I treated him with the contempt he deserved, every other Dr and nurse could not have been more supportive, but at the end of the day I came home with no answers only the reassuring words that "it's nothing fatal". unfortunately on coming home from the hospital my condition again deteriorated.
It was from that point on, that my wife took control and started to look for more information about M.E. Books from the library, clippings in newspapers, a phone number here, a fact-sheet there, and slowly we began to get information, and found out that I was not alone.
Since then I have still had the same problems, some days are worse than others of course but it is ever present. I have been in hospital twice since that first time, again nothing was found and it's just attributed to my M.E. I have had numerous Outpatient appointments, again all coming to nothing, Dentist appointments are frequent as I have had nothing but trouble with my teeth and gums since I have had M.E. But the Dentist is in some way like the Dr's, he can find nothing wrong with either my teeth or gums so again it must be caused by the M.E.
A combination of pills help to keep my condition stable, not for the M.E. but for the sickness, the headaches, the pains, etc.
I rarely get out of the house, not because I don't want to, just the harsh fact that my legs wont carry me any distance, that and the fact that I just don't feel well enough to in the first place. I hope that one day things will improve but until then every day is taken one step at a time.
Bill Scott
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