rosasericea | The Hours

When it gets this bad, panic starts to set in. I'm doing everything I can to stay calm, but it literally feels like my muscles are tearing themselves apart.

It's like my quads and triceps are Steve Rogers-ing all day long. After awhile, my brain starts worrying that they'll never stop. I don't have many tools to intervene. I don't have meds that work, my PT is on hold til we identify the cause and heat/aromatherapy/self-massage is all well and good but it offers very temporary relief. 30 minutes of treating myself yields maybe five minutes of release.

When I sneeze now I just scream in pain. Not ideal for heading into the office. It's funny--I have the ridiculous range of motion characteristic of EDS-ers, but my muscle tone and spasticity/stiffness are completely abnormal and weird.

Anyway, I'm pretty isolated in the real world. I don't have anyone really to talk to besides my husband, who's going through his own stuff right now and I don't want to make that worse. My only other friends are across the country, and my family, while they are nearby, isn't... I called my mom today and she almost had a borderline meltdown and attacked me because I explained why I didn't bother pushing my ophthalmologist to acknowledge that I was there for eye pain and migraines, not just blurred vision. (It was clear from her demeanor that she wasn't going to listen and at this point I don't waste energy on doctors who are going to dismiss, deride or dispute me on my own experiences.) My mom had a migraine herself, and when she's not feeling well she regresses completely into Selfish Abuser Mom, who interprets anything but calm, mild deference as a violent personal attack and responds with disproportionate meanness. (Usually with a sprinkling of gaslighting or boundary violation, even now.) I really wish I had a support group or something, because it's hard to carry all of this. There aren't many groups in my area, though, and the ones that exist are either group therapy, which I'd have to pay for, or focused on fibromyalgia and ME, which I do not have and to which I really can't relate.

It's probably weird, but right now I'm trying to stay calm by watching Mindhunter again with the lights out. What can I say? Serial murder dramas are relaxing...