......On vacation May 2000. I may appear OK, but don't be fooled.
My ME/CFS Story
It all started back in 1988. I was a happy guy in my late thirties. I had a great job. A happy long term relationship. I enjoyed socialising. I really loved swimming and playing squash. I had done every kind of DIY job you could imagine, and got great satisfaction from everything physical be it fixing the car to laying concrete.
I sort of took my health for granted as you do. I had, had paralytic Polio as a child, which I luckily came through unscaved except for some weakness in my right arm. Apart from the usual childhood illnesses and some lingering, although quite chronic throat infections in the seventies, I never would have expected to become a victim of a chronic life-altering illness like M.E.
In the Spring of 1988, my partner (at the time) had caught flue, she was off work for 2 weeks. By the second week I got the same infection. I tried to soldier on but finally had to take time off. It wasn't the worst flue I'd experienced, although I didn't know what a milestone it would later become. After 2 weeks I appeared to be well enough to return to work. I noticed I felt really washed out, quite normal after flue, but this Fatigue never subsided. I found I had no energy, and felt quite poorly. This seemed to be different to how I'd ever been after flue before, where you normally notice your energy and well-being pick-up.
After months of working but nothing else I saw my GP, who said I should get on with my life, go swimming etc. I told him I wanted to but felt so fatigued that I couldn't. In fact I knew that any exertion was making me worse. I had several blood tests at the clinic at my local hospital, which were all negative. My friends couldn't understand why I wasn't socialising.
Almost in the blink of an eye I felt good again. My energy was OK. End of story, I thought. This 3 month experience was quickly forgot, and I got on with my life. I had 12 wonderful months swimming, football and socialising. when I got a nasty stomach flue. Nasty is an understatement, I think its the worst thing I ever had. I was ill in bed for over 2 weeks, lost a lot of weight, and of course quite washed out when the thing subsided. I soon noticed that as the infection left I felt very fatigued the same as I had felt the year before. Again this awful fluey achy feeling worsened the more I tried to do, which was very little. I was going to work, by car, and sitting at a desk.
Again I saw my doctor, again blood tests were negative and again my friends couldn't understand not seeing me at get togethers. I was going to work, and that was all, I had no energy for much else. I took lots of Vit C, Zinc, and tried everything to give my body a fighting chance, but nothing helped. Mysteriously after 3 months everything changed instantly I was well and I resumed my life. My mother had seen an article in a women's magazine about 'M.E' she said these symptoms sound exactly like yours. When I discretely mentioned M.E at the hospital, I was told that, yes, they did know about it but only came up with this diagnosis after ruling out everything else. As I had got better again I had little interest in what had caused me so much grief and just wanted to get on with living.
In the summer of 1990, I was made redundant. The recession had hit the construction industry. I wasn't bothered I'd been working quite hard and looked forward to a break, and was quite confident of finding a new job. At my last job interviews I was offered all three jobs. I really liked where I was, but looked forward to a change. I decided to take time out, a chance to do up the house. I started landscaping the garden, which had resembled a bomb site. Remains of a concrete base, tons of rubble areas of root-bound grass. It entailed a lot of digging, breaking up and lifting bags of broken concrete, taking them to the local tip, plenty of cold beers and watching the world cup. It was hot and sunny, I was in my elements. As much as I enjoyed designing and surveying buildings this was a welcome change. after the garden I proceeded to completely renovate all the sash windows in the house, not a quick bodge, everything stripped back where required, even glass panes removed and frames repaired. I must confess to being a bit of a perfectionist, and did an A1 job. By the autumn when the windows were not completely finished, I noticed after going for a swim, I didn't feel good, I had pains in my back, I couldn't do things without feeling awful. Again I felt unwell, again any exertion made me much worse. I realised this damn illness had come back.....the difference this time it didn't follow an infection, it just suddenly appeared.
Oh well, I thought, bit of a shit but hopefully it will soon pass. Wrong, this time it was much worse I ended up spending many weeks in bed unable to do much except rest. After some time I thought this is crazy I must see a specialist to get it sorted out, I'm wasting my life away. I got a list of consultants from the M.E Association, or possibly Action for M.E and asked my GP to refer me. By the time I attended the Chelsea and Westminster clinic in 1991 I was having remissions and relapses each lasting about a month. After several visits and negative blood tests they told me I was probably susceptable to Virus's (because of my background with Polio) and my regime of doing things when able to, and resting when unwell was correct, and there was no need to attend the clinic on a regular basis. I was pleased not to have to make the journey as the travelling was making me worse. Interestingly although they never actually said to me "You've got M.E", they wrote to my GP stating "That his M.E was getting better"
I struggled on with a pretty restricted lifestyle, I went for some job Interviews when feeling better, but each time the well-being soon subsided and the reality was that I wasn't yet able to get back into work.
In the Autumn of 1992 I remember a relapse, and I thought OK I'll have to wait a boring month till it passes. I ticked off the days in my diary like a man in a cell. One month came and went, so I thought perhaps this time the relapse will be longer. Three months went and I was still the same. I had some days here and there feeling better but no remissions like I had in the past. And to this Day, almost ten years on I still haven't had a lasting remission.
By 1994 my condition had worsened to the point where I could hardly walk at all. I needed to claim sickness benefit as there was no way I could work. My GP had retired. The replacement Doctor said she couldn't sign a certificate as she didn't agree that M.E existed. I saw another GP in the same practice, for perhaps some more understanding. He said " How old are you" "You don't work" "You don't have a girlfriend" "What do you do all day" oh and "Have you ever seen a Psychiatrist" I could see where he was coming from. I changed practices, my new Doctor said she didn't believe my problems were due to depression, she said I was motivated, and that people who were depressed lack motivation.
Today 2001 I'm still unwell. I get a few days here and there when I feel human, have energy, but generally I'm 'shitty'. My muscles feel like they are borrowed from someone else, they are stiff and achy, and feel poisoned. My muscles have wasted considerably, where I was always 10.5 stone, I now am 9 stone! incredible for my 6 foot height. I get terrible brain fog and an aching from my brain that permeates my whole body. One could write a book describing the symptoms of M.E, but I recently saw one sufferers account, and he said, he could give up the physical loss painful as it was, as he'd been very active before becoming ill, but what he couldn't live with was the awful brain fog, sometimes having to use all your mental capacity just to stand still, when you brain is shot. I definitely agree.
Well its not all doom and gloom. When you are suffering from a long-term illness, you sort of have to accept it. It becomes normal. You stop grieving for the things you can't do. The trouble with this particular illness is it keeps changing, you start to feel better, and your mind says I'm OK, I can think about work, I'm over it. Then you get really awful and your mind is polarised in the other direction and you think there's no hope. I, like many other M.E sufferers do have hope that one day we will find the answers. Don't give up.
© copyright .........................Home page .........Ginger