Sleeping is no good for me. If I sleep on my side, my back gets all messed up and hurts. If I sleep on my back, my knees hyper-extend and hurt for days. So I’d just like to give up sleeping.
Joints that are in pain today: left sacroiliac and right shoulder. Sacroiliac is generally unstable and shoulder subluxed in my sleep. Isn’t Ehlers-Danlos Syndrome fun?
A question for other people with Ehlers-Danlos Syndrome (or Hypermobility of some other type): Can you recommend a good, comfortable pair of shoes?
I value comfort over looks and heels are out of the question. Plus, I live in Scotland so they need to be at least marginally water-resistant.
Do any of you have really good comfortable walking shoes that don’t make your feet feel like every tiny bone in your foot is dislocating when you walk?
It turns out that the thing where I pass out in hot weather is probably POTS related to my EDS. I was hoping that would be one of the features that I wouldn’t get. At least it’s pretty mild so far. And I live in a country where summer is only a couple days in July, so most of the time I’m okay.
I’ve posted about my disability a lot lately and that makes me think about it and think about why I talk about it.
So I’m going to make one super long gut-wrenching post about it and be done with it.
My right index finger keeps hyper-extending when I knit. I should probably get a ring splint. But, money.
Me: My thumb hurts.
Me: Cause it bends all funny and it's wobbly.
H: Is that your, um, thing or whatever or are you just being weird?
Me: I don't know. THESE ARE THE ONLY HANDS I'VE EVER HAD AND I DON'T KNOW HOW HANDS ARE SUPPOSED TO WORK.
Remember when I used to be an awesome artist and I could draw or paint just about anything and I won first prize in the school art show? No you don’t. Because that was a very long time ago and now my wrists and my fingers don’t move right anymore and I can’t draw at all.
I was supposed to be a great artist. Or at least a cartoonist. Now, just the few crappy sketches I included in my last book were a struggle. And I have people writing me fan mail and telling me how much they love my drawings and my art that I haven’t been able to do properly for 10 years.
It makes me feel useless and broken. I want to draw, and I literally can’t. I make excuses about not having the space to set up a good drawing area. Or not having any of my old favorite paints or brushes. But the truth is that the part of the equation missing is me. My hands just don’t work that way anymore. I think losing that hurts more than most of the physical pain.