November 29, 2012

Tug o’ War

Posted in Journey, ME/CFS tagged , , , , , , , , , , , , , at 9:27 pm by Reva

Tonight I was skimming through the latest internationally accepted criteria for diagnosis of ME.  I haven’t read it in detail but a funny thing struck me.

I was reading through the checklist of symptoms for diagnosis, and I thought, “Yep I still have it”, then I didn’t know whether that was a good thing or not.  I mean, it sounds ridiculous to be happy to have a chronic debilitating condition that has no known cure.  But what if I don’t have it? Then what’s wrong with me?

Pictograms of Olympic sports - Tug of war. Thi...

I remember feeling the same confusion when I first was diagnosed.  After years of being unwell, tests and not knowing what to call what I had, I finally had a name for what I was experiencing. Yay. But it will never go away.  Not so yay.

I’ve been in a lull with my treatment for the last few years.  I’ve just been riding the storm I guess.  Every now and then I read about a new test or theory and I think, “maybe I should try it” followed quickly by “but will it achieve anything”.  Things I’ve tried in the past have been costly but I haven’t noticed any change but taking them.  I’ve probably become a bit lax in some of my management stategies.

After seeing a psychologist a few years ago I decided that I couldn’t let ME/CFS wasn’t going away, so I couldn’t let it control my life. I took back that control but maybe a little too much so.  I have too much caffeine and alcohol, not enough fluid.  I don’t pace myself as well as  I used to.  This past few weeks have been pretty chaotic, and I’ve consciously tried to change some of these things.  But I’ve also been thinking, maybe it’s time to take a stand and start looking after myself a little better.


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