Animated GIF. William Shatner as Captain Kirk screaming CANE in place of KHAN.

Thursday, September 8, 2016

Tired of Being Tired, Sick of Being Sick

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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