My one incision from surgery almost a year ago is all of a sudden thinning out and growing in size. Here I thought I avoided the EDS incision struggle. It’s no big though. I’m just curious it healed okay and then started going weird after 8 months.
I’ve recently started wearing compression socks for poor circulation which are really comfortable and they help me a lot but when I take them off after a few minutes my feet get really cold a go sort of blue? Is this normal for people with bad circulation? Or is it something to do with the socks?
I recently saw a pain scale with the caption “if you can still talk, your not at a nine” and it really really bothered me. One of my doctors (who works extensively with teenagers with CRPS) said that one common theme he sees in his patients is a complete lack of reaction to pain. He told me that when he performs procedures and tests that are objectively extremely painful, often the teenagers will be smiling and cracking jokes, even though he knows that they are in excruciating pain. At nine I can carry on a conversation (not very well, because at this point things start to get really cloudy for me, but still a conversation). During my nerve conduction study (If you’ve ever had one you know how awful it is, and if you haven’t, it involves a six inch long eighteen gage needle stabbed deep into your muscles over and over while you clench and relax them as instructed.) i chatted with the nurse and played games on my phone. It wasn’t that I wasn’t in pain, it was just I was also outside of it. For teenagers with chronic pain a disassociation from themselves and their bodies is common, even expected. If I “grounded myself”, saw myself as In my body and of my body and nothing else I don’t know how I would survive. In order to live, to get out of bed or wash my hair or put on pants I have to separate ME from my body. It’s how I can pop my shoulder out of socket and put it back in during a conversation. It’s a matter of survival. And I’m tired of people saying that my pain isn’t real or valid because of it.
used to be I hated my body cause I thought it looked ugly, now I hate my body cause it’s the functional equivalent of a 1998 Honda Civic with 200,000 miles, questionable brakes, temperamental AC/heating, and terrible gas mileage that’s liable to break down at any moment in the middle of the fucking road. and the seats aren’t even comfy
The problem with chronic illness is that no matter how badly you need or want a break, there is no way for you to get one. You can’t take a vacation and leave it behind like a stressful job or annoying family. You carry it with you and have to accommodate it every day for the rest of your life. And it’s so debilitating and exhausting knowing that you will never, ever get a break from it.
Today I pulled into a grocery store parking lot and an old lady was in the car behind me. I pulled into a handicap spot (the only one open), and when I stepped out of the car the old woman was idling behind me with her window rolled down. She looked at me and said “I needed that more you know. You’re young.”
I literally just looked her in the eyes, said “fuck you” and walked into the store. You can see my cane and my limp. Old people who are ableist to young people bc “you’re too young to be disabled” can go to hell.