EDS – When Pain is the Order of the Day

By: JANA GREENE

Hello, dear readers.

The past week has been a pain-fest. There have been times I’ve just laughed hysterically at the notion that I’m supposed to live day in and day out in this level of pain. Ha!! I mean REALLY??
So I write about it, because it’s the ONLY way I can deal with any of it. Thank God journaling is an outlet.
The truth is that I am slowly losing my mobility, and in awful pain while doing it.
This is life with Ehlers Danlos.
This morning, I subluxed my thumb out of joint, picking up a stack of papers. I bent down to clean litter boxes and the pain in my “good” knee brought me to tears. I waved at someone the other day and had to ice my freaking shoulder that night. It’s not just big movements that cause injury anymore. I can dislocate fingers opening a jar. I can’t hang laundry in the closet anymore because I have to reach too high to hang Bob’s shirts. Stairs are murder on my hips and knees. I AM ONLY 53 YEARS OLD.
I am really starting to feel by body slipping. I no longer have “a good knee” or “a good shoulder.” The mutated collagen holds my joints together is getting more lax. My skin is getting stretchier by the day because it doesn’t have proper collagen to hold it together. Falling asleep is excruciating because no matter how I lay, there’s pressure. Pain wakes me up from my sleep.
When my husband hugs me, I frequently ask him to hold me tighter so that it feels like my shoulders aren’t coming out of the sockets. I wake up and decide what I need to brace for the day – I have a “wall of braces” in my closet. I hadn’t had to use my cane since I lost the 40 lbs, but I’m having to use it again. One day I’ll need a wheelchair. Normally, I bitch about these things and move on, but it hasn’t subsided long enough for me to take a breather between flares lately. This of course this takes a toll on the whole family. Then guilt kicks in. Lather, rinse, repeat.
My Instagram and TikTok handles are “unbreakableJBG,” because I may be fragile, but this won’t break me. Oh hell no. I’m too damn stubborn. (But please pray for me, if you think of it.) ❤️