I really need support [long post, housebound w/spine issues]

I have EDS and Ive had POTS since I was 9. I'm 25 now, and have multilevel degenerative disc disease and nerve damage in all my limbs. I caught COVID multiple times between 2019-2023 and each time, it made my symptoms worse, and worse, and worse.

I've spent the past several years realizing and then denying that I have Long COVID and experience PEM. I kept pushing myself to go to school, do my internship, go to in person appointments, go to physical therapy, and socialize with friends. I've had to stop doing all of those things now because I was no longer able to stay conscious, or I'd end up horribly ill from it.

I've driven myself absolutely crazy wondering why I keep feeling so sick when I do "the right things," and feel much better when I rest as much as humanly possible. I don't have help, so I still have to push myself to do my laundry, care for myself, as well as my cat, but even that leaves me rolling PEM. I've lost 70lb since Jan 2025, though some of that was exacerbated by mental health issues too (which are getting better thankfully).

I'm really struggling with accepting all this, especially without having an explicit diagnosis. My EDS doctor also specializes in POTS/MCAS, and I assume ME/Long COVID. He put me on Vyvanse to help my blood flow better and reduce crashes that way, and that did help my POTS. Not by much compared to how bad it is, but enough to make me happy about it. It definitely helped my ADHD though, ahah.

But he also prescribed me PT for my spine and nerve damage, and I don't know if I can do it. The EDS specializing PT is literally across the street. It is right outside my window, I shit you not. Ive been spending the past month and a half trying to get out of rolling PEM for long enough to go without making myself worse. I keep failing. I'd hang out with my friend upstairs, and crash. I'd do my laundry, and crash.

I keep declining hang outs now, and it feels absolutely dreadful. I don't know how to just rest. It feels like just existing is exerting myself. I can't even lay down for a prolonged time because my spinal muscles will spasm. Some days, I wake up violently, systemically ill from it (probably spinal instability). Even when I go to the ER, I'm just sent back home and told it's just chronic pain. The symptoms stop when my spine is properly supported.

My head hurts now so I'm going to calm down somehow. I'm sorry for posting such a long windy message, I'm just really overwhelmed and at a total loss. I just feel crazy every time I have to explain to people why I can't do something. A lot of the time they ask questions that imply I'm being overdramatic, or just outright say it.

I hope anyone who sees this experiences something good today, no matter how small. Take care of yourselves - I'll try to do the same. Goodnight 🫂