Since we all know EDS and skin issues tend to be very hand-in-hand, does anybody else have issues with what is essentially really bad diaper rash? Any time I can't let my skin just breathe all day (meaning, going commando and wearing loose cotton pants), I wind up with a sore behind and groin. I did a 5K walk today (GO ME! also, not the wisest decision ever, but I'm too stubborn for my own good) and there was just enough warm air and humidity for me to be slightly sweaty. By the end, I felt like my underwear was made of razors and basically every part of skin covered by my underwear was on fire. My skin was so chapped that it was open and bleeding for a while too.
I HATE that on the list of things EDS does to my body, humiliation in the form of literal pains in my ass has to be added to the mess.
On the plus side, my legs are finally starting to do better from my braces. I went through weeks of itching, scarring, bleeding, repeat, before the scarring was a bit more callus like in that it's protecting me now. While I'm not thrilled about scars, I'm glad that my legs don't bleed or feel like they're on fire so much anymore. And the braces are really making a remarkable difference in my balance and leg pain.
Now I just have to deal with the back/neck/shoulder pain that seems to want to stick around and be besties and the sciatica that I can't ignore any longer (it's one thing to notice it once a month or so, it's another entirely when it's at least 50% of each day). And of course the dysautonomia "flare up" that seems to like me the last couple weeks - I'm going to ask my about possibly finding a potassium supplement that would help with that though, as it seems to be the cause of most of the issues....if I drink a bucket of Gatorade and eat bananas, I fare better than when I stick to water and clear soda, and we've already noticed that my potassium runs on the low end, which might be enough to be setting me off.
There's always more to say, but I'm tired. My nap earlier didn't quite help the yuck feeling I got from being outside half the morning. Good night's sleep is the cure I'm hoping for.
Until next time, hugs and spoons to everyone!
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