Today, I went out for about three hours with a friend. I really enjoyed my time with them, but when I got home, my body shut down. Fatigue set in, and as much as I wanted to resist taking a nap so late in the day, I felll asleep anyway.
Now it’s late at night, and my body is complaining about me going out and doing things. I can’t sleep because I napped earlier, and my joints are in misery. I needed to tell someone, but I didn’t know where to go. So I’m here. Talking to people on the internet that I’ve never met before because I trust them to treat my condition with more respect than my IRL friends.
I hate the fact that I have to spend so much money on braces instead of nice clothes. When I went on a trip out of town for a few days, I had a whole bag filled with knee braces, a back brace, compression socks, elbow compression sleeves, compression gloves, and ring splints, plus my cane. It still wasn’t enough to keep me together, and now I have to go searching for ankle and shoulder braces.
I’m tired of living like this, and as lovely as my friends are, I know that they can’t understand how much I perform to look healthy enough in front of them to be accepted. It’s that or slipping into social isolation, which I can’t risk doing for my unstable mental health.
I want to be able to go out and do fun things on a whim without having to consider my current pain level. I want to not have to purposely schedule large chunks of downtime into every single day so that my body doesn’t collapse on me. I want to not have to deal with deciding whether I need my cane enough to stomach the ableism that will come my way or if I can suck up the pain enough to avoid any comments.
I don’t really know where I’m going with this, so I’ll stop now and try again to get some sleep. #EDS #HSD #Osteoarthritis