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.


  1. Thank you so much for your post, and for the energy you used to write it! I too am a first time blogger. When feeling well, I could write easily, but with ME/CFS it took me hours, over the course of 3 days, to write just a short blog post. So frustrating!!! All the best to you.

  2. I hardly ever run into anyone whose onset was prior to mine...1980. I was 31. CONGRATULATIONS.

  3. Thanks Pat. I'm sorry you've had it so long also. I guess by congratulations you mean I've survived this long and have adjusted to a new way of living. As you know, it's not easy. I continue to adjust as each new symptom, flare-up comes along. And I hope for a cure. And if not a cure, then an effective treatment.
    I wish you the best on your journey with this as well.

  4. Kari, I can't remember if I answered your post.
    Thank you - for taking the time to read and to comment. All the best to you also.
    You do understand how tiring and brain-draining it can be to write. That's one reason I haven't posted another entry. I hope to get to it this week. Thanks again.