There’s a wonderful story well-known by people with chronic illnesses that I encourage everyone to read.
In summary, a woman with a chronic illness explains to her friend how much she
can do in a day using spoons to represent various tasks and explaining how each
day provides only a certain number that can be used. The whole story is
definitely worth the read, especially if you’ve got a “spoonie” in your life.
It’s a humbling experience to have your body betray you. No
matter how many wonderful ideas you have, no matter the good intentions and
positive mental energy that want to come pouring out of you, your body can just
shut down and say “NOPE! All you’re going to do today is lie in bed and binge watch Leverage!” It’s hard
to not become bitter as you realize how many of your aspirations you’ll never
achieve, something which after years of therapy still find having trouble with.
I have a backlog of articles half-written and a longer list
of ideas and inspirations that I want to post, but unfortunately my mind and my
body are not cooperating with me. Since my last entry I’ve had two MS flares,
fallen down a flight of stairs, and had surgery, amongst other things. I’ve had
my disability hearing and, because the judge and I were apparently living in
parallel universes, was denied, so I’m working on that appeal. (Quick rant:
Every single thing written by my regular doctors, some I’ve been seeing for six
or more years, she “afforded little weight” to, but she “afforded great weight”
to the two social security doctors I’d never even heard of before I sat down to
read the judge’s ruling. Grrrrrrr.) In good things, I’ve been doing some
awesome work with the Access Mob, I am now a board member for Accessible
Dreams, and I’m working to build a new Center for Independent Living in
Pittsburgh. My love and I have traveled several of times and otherwise had a
fantastic year.
So be patient with me, dear readers. I will start this going
again, providing my body cooperates with my fervent desire to do so. Only so
many spoons in a day, after all…
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