Forget whether it should ME or CFS. I have a new name for it - TED, the Trial and Error Disease.
How many other conditions revolve so much around the patients working out their own treatments? Would a cancer patient be told 'well we don't know you'll have to try it yourself and see'? I think not.
Maybe we don't help ourselves, or I should say, we help ourselves too much. The kind of people who are predisposed to getting ME are the kind of people who are going to try and sort it out for themselves. They are the kind of people who won't sit around doing nothing, even though that is all they have the energy for.
But, although this wouldn't be my condition of choice, give me something with pills and definitive tests, I'm proud to be one of those who won't metaphorically sit back and not help myself and my ME friends through Trial and Error.
PS feels like more error and lots of trial this week!
2 comments:
Like it, Ruth! So true.
Yes, I identify with this - much trial and many errors here too.
In my more desperate moments I feel angry that the docs can do nothing for me. Then I remember all the times their drugs have made me feel even worse and realise I'm probably better off being offered nothing.
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