Having M.E./CFS

niceguypaulSun 27/03/11 15:04

This is partly a rant because I am so sick of being sick and partly an attempt to educate people about this condition which is so little understood and so widely misunderstood. I know there are other outers who suffer from it and I am not asking people to feel sorry for me.

OK, I have had the condtiion for 11 years. It has ruined my life and forced me to retire at the age of 53. It began with a very severe bout of flu which I did not fully recover from. I found that I kept getting colds all the time and was falling asleep at my desk. After 6 months of this my gp referred me to Professor Findlay (one of the top experts in the world on the condtiion) who diagnosed it.

It means that I get tired very quickly and not just ' oh I need a sit down ' sort of tiredness but extreme exhaustion which may last for days, especially if I have been out. Mental confusion is another and especially unpleasant symptom especially if you are a university lecturer as I was. At time it was like the early stages of Alzheimers but this has greatly improves since I started taking fish oil. ME is a disorder of the central nervous system and I get pins and needles in my legs and feet all the time. There are other symptoms but I will not list them all.

In practise having ME means my whole life has to be constructed around it. For example I cannot do two things in one day e.g. go to the supermarket and have lunch with a friend. If I do go out socially I have to make sure that I keep the day before and the day after free so that I can conserve my energy. I have most energy in the mornings and have to have a nap in the afternoons, evening activity is very restricted. This means that I cannot go to many out events as they are mostly in the evenings. Also my nervous system cannot tolerate alcohol very well so meeting for drinks is a bit pointlless. Most of the time I spend at home, alone. I read a good deal but can only do so for short periods. The rest of the time I watch tv or mess around on the internet.

I do manage to do things though, theatre and cinema trips are good especially daytime ones. I enjoy museums and galleries although they leave me totally exhausted. I even manage to have the occasional date and (even more occasionally) sex. I go on holiday but am prone to pick up infections on planes ( it also affects the immune system) so long haul flights are out. All of these things have to be carefully balanced so as to be within my available energy resources.

So that is what life is like with M E. There is no cure, nor is there likely to be one in the near future. No one knows what causes it although last year an associated virus was discovered. It is NOT all in the mind.

Thanks for reading this rather long piece and if you know someone with the condtion try to remember how difficult and isolated their lives can be. If you feel you may have it yourself go to your gp and REST, REST, REST.