Sunday, August 2, 2009

Words to Live By

"Life may not be the party we hoped for,
but while we are here we might as well dance!"
While I'm not one of those who believes that CBT will "cure" CFS, I do think that some people with CFS would benefit from counseling to learn to cope with the changes wrought by the illness.
Many of us were very active people – hikers, marathoners, even professional/Olympic athletes – before getting sick.  Sitting down is simply not in our nature, much less lying down, so it's especially tough for us to get a disease like this that brings life to a screeching halt.
In my youth, I was a dancer.  We did a lot of performances at nursing homes, where the audience participation portion was a challenge because of the various debilities of the patients.  Fortunately, our group had a lot of creative minds who figured out there are ways to dance even if you're in a wheelchair, as well as ways to be danced with.
I've seen wedding photos where the father-daughter dance was performed with the daughter sitting on dad's lap while he propelled his wheelchair around the floor, as well as with the bride perched on the armrest while the groom wheeled them around.
So, put your mind to it and figure out alternate ways of having fun.  It may be finding some exercise that can be performed lying down, or something like yoga that keeps you flexible without exhausting you.
As I've had to explain to many people, if they'd asked my hobbies before I got sick, I would've mentioned things like volleyball, baseball, and hiking in the nearby mountains. Now, they're watching other people play baseball, listening to music and reading.  I do a bit more physical activity than I probably should (walking and housework), and pay the price for it afterward, but that's the best compromise I can make.
Similarly, my ultimate career goal is now out of reach because of my health, but I found something else to do that fulfills my need to succeed.  One of our most prolific CFS activists is entirely bedridden and dependent on others.  Just be creative and figure out how to make the best of your situation.

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