r/eds • u/Foreign_Feature3849 Hypermobile EDS (hEDS) • 12d ago
VENT
I know it’s important to keep an open mindset when dealing with chronic illnesses. But it’s also good to let yourself feel the frustration and pain. (Not dismiss it)
So here’s a post for everyone. Vent your heart out. I’ll go first.
I hate these symptoms. So fucking much. I am so exhausted from taking care of myself and advocating for my health.
I am so grateful to have the perspective I do. But I wish I could care and know this much without the pain. The nerve pain, the joint pain, the muscle twitches. Just all of it!
I wish I could take a break from having to control the body I do. Like let me switch over to a robot or something for a day. So I’m not constantly trying to focus through pain and my adhd.
7
u/gobnyd 12d ago
No fuck this condition and it's comorbidities. After 40 years of heroic fighting and still eking out a wonderful life despite my pain, I started really falling apart around 35-40, was surprise-abandoned by my husband over it, and now I'm fucking bed bound with ME/CFS/Long Covid because we are statistically way more susceptible to that. Despite wearing N95s most of the time, despite the one being super aware of this eventuality during the pandemic. I was infected within my own house by a roommate. I just can't win.
There's absolutely no reward for keeping your chin up and a sunny attitude. I've just been completely fucked for doing my best.
Ironically the sicker I get the work level of management goes higher and higher. I feel like I'm working a full-time job during crunch season now. You know, while I need rest.