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How ME/CFS has affected me
I have had ME for over 7 years now, though there have been many ups and downs, and those 7 years have not been all bad.Over the course of my illness my major symptoms have included:
  • Exercise-induced muscle fatigue - I find I often have to sit down after 20-30 minutes of standing in one spot

  • Post-exertional malaise - a really awful feeling of total exhaustion, which usually kicks in the following week

  • Minor muscle aches and muscle twitches or fasiculations in my leg and arm muscles

  • Nausea - one of the worst symptoms when I am really bad as I don't seem to be able to function normally, I don't feel like eating and I find it difficult to remove the feeling.

  • Memory problems - I can't work out whether this is due to M.E., excessive tiredness or old age (I'm 30), but what was once a really good memory now has problems with remembering what my house-mates told me an hour ago

  • Very cold feet - this is caused by a problem in the autonomic nervous system. It seems that the sensory nerves are being incorrectly regulated by the brain stem and the blood vessels in the extremities get constricted when they shouldn't be

  • Extra requirements for sleep - I frequently find that I need an extra hour of sleep in the afternoon as well as the normal amount at night. This can be a major problem in terms of lifestyle as it means that the sufferer cannot be away from their bed for more than 5 hours

  • Dizziness and lack of concentration - occasionally I have been watching TV when my whole vision starts to move from side to side. Very odd!

  • Strange sensations - acheing joints and prickly feelings on my arms and legs.

  • Worsening of symptoms when catching infections - I'm usually worse in winter and I think that this is because I catch more bugs which put a strain on my immune system



I initially became acutely ill in April 1994. Though I have never found out what caused my illness it seemed to me as though I had caught some nasty virus because I remember getting up in the middle of the night and nearly passing out. My lymph glands in my neck were enlarged and within a month I was totally bed-bound. I had blood tests which showed that I had had a viral infection, but the test for glandular fever came up negative. To this day the mystery remains, but one puzzling fact is that one of my colleagues at the lab that I was working in at the time also contracted a strange bug which resulted in him suffering from ME/CFS as well.

I was forced to go and live with my parents because I simply could not cope on my own. They were very supportive towards me (and always have been) and it was a relief to have a secure base where I could recover. After 15 months I felt able to return to my former employment on a part-time basis, but unfortunately the pattern of the illness that persists today started to manifest itself. I would have periods of a few months when I would feel quite well and then suffer relapses as a result. Naturally this has made life very difficult as the occurence of relapses at unforeseeable times has meant that planning ahead is virtually impossible without making sacrifices.

I suppose that I have accepted the fact that my ME will follow a relapsing/remissing course as this pattern tends to have repeated itself over many years. I was very well for 15 months in 1997-1998, when I worked full-time as well as studied for some very demanding accountancy exams. There are still times when I feel very capable of doing things, and overall I am a pretty optimistic person. I believe that I have the capability, given suitably flexible circumstances and understanding people, to do something really constructive and worthwhile with my life, even if this means at a much reduced level to previosuly when I was heealthy.

The one important lesson that ME has taught me is that if I have a good mental attititude then I can enjoy life and I can regain control over my situation. The most demoralising aspect of any chronic illness is the fact that the control of your life is taken out of your hands. To my mind the one thing that makes human beings unhappy, stressed and despairing is finding that their lives are mapped out for them. In my "Help Yourself" section I suggest ways to regain some control over your body.



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