Friday, January 21, 2011

I'm a veteran.

I may be a beginner at blogging, but I'm a veteran at CFS/CFIDS/ME (different names for the same disease).  I caught what the doctor thought was the flu in 1973.  It wasn't the flu.  And I haven't been the same since.  I went from being an athlete (tennis, soccer, softball, hiking, and biking) to being bed-bound to using a cane to coping with limits to stretching limits.  With relapses along the way.

Probably the hardest part has been what this misunderstood, discounted, minimized illness has done to my brain.  I was a writer/editor who could write and understand poetry, proof read a book, write a newsletter, and read for hours.  In the span of three years I could no longer understand the lyrics to songs or what a poem meant or understand what was in my mail or get well cards.  Fortunately I'm not there now.  I'm so grateful to be able to read again.  But it's not the same.  Reading and writing takes much work, and I can only do it in spurts. 

That's enough for now (It's taken me a long time to learn limits!).  More later about cognitive problems.  For example - a good day means I use words with more syllables.  And this much writing in one day means it's been a relatively good one.

More on symptoms.

I'm a beginner.

I'm a first time blogger.
What prompted me to start a blog was a notice on Facebook about establishing blogs to let others know what it is like to have CFS (Chronic Fatigue Syndrome) - a misnomer if there ever were one.
I've heard this fatigue compared to regular fatigue is as a stick of dymamite to a match.  Maybe that's not even enough.
The other reason for the blog is to make the public aware of new advances in working on the causes of this disease and to speak to the reports doubting the scientific work carefully done and waiting to be replicated.
That's all I have the brain power for now - but I'll be back....

Here's a link to xmrv studies.