Rook 🏳️⚧️Asking your parents (who are in their 70's) to get a shower stool for their bathroom.
Not for themselves, but for when you're visiting...
#JustDisabilityThings #POTS #HypermobileEhlersDanlosSyndrome #heds
W_Dräger 🦉
Morgan ⚧️Any guitar* players on fedi with EDS or painful hypermobility? Do y'all have advice on how to cause less pain when I practice/perform? So far I've been switching sides, which seems to help with the long-term pain of always playing "right-handed," but I still end up in pain on whichever side of my neck/shoulders the fretboard was on.
*Or bass guitar, banjo, pretty much anything on a guitar strap
#askFedi #duckDuckFedi #musician #disabledMusician #guitar #hEDS #eds #hypermobility #chronicPain
Sherri Koehler (she/her)Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).
An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).
Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!
The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.
Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.
I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls
Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.
*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.
starryeyesI'm really struggling with chronic pain due to my genetic disorders, am not able to afford meds, & I'm *not* okay.
If anyone can help, that would be so appreciated, but no one has to! I'm sorry I'm even asking. I need $70. I hate asking for help, I feel like a jerk, but I don't have another option.
PayPal paypal.me/motleychick
Cashapp $izzi6
Venmo @egdirbretla
#NEISvoid #hEDS #EDS #MECFS #chronicpain #chronicillness #spoonie #spooniechat #longcovid #marfansyndrome #POTS #disabled
I've had enough. Time to be that bitch!
Fallon the chronic gremlin
Having some disability grief about how I had to quit guitar because my hypermobile fingers couldn't hold down the strings without pain. I didn't know it was a disability at the time. I just thought it was the pain everyone felt playing guitar, and that I was uniquely bad at tolerating it. #HEDS #NEISvoid #ChronicIllness
illmarks2026_2_16 “Botox for Migraine” Injection Set #2, and 5 Hour Drive to/from Appt
https://www.illmarks.com/2026_2_16-botox-for-migraine-injection-set-2-and-5-hour-drive-to-from-appt/
#2 #art #bodyHorror #bodyMapping #bodyart #bodymapping #chronicIllness #chronicIllness #chronicmigraine #disability #disabilityart #DisabledArtist #eds #healthcare #heds #longCovid #longcovid #mcas #medart #medical #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme #queer #QueerArt #QueerArtist #SciArt #SciComms #trans #transArt #TransPride
VarceptiousIts starting to get warmer out and my body is hating it. This winter was fun while it lasted in the sense of cool weather so im able to do more without passing out. My #POTS is already starting to kick my butt with the small temp increase we've gotten. Guess im going to have to go back to being accessed all the time and doing fluids everyday so I can do really anything besides being horizontal. Hopefully my meds my specialist gave me can make a difference too. Otherwise now that its warmer ill be horizontal and staying indoors doing nothing. I also have at least another month for physical therapy to help me understand my body better with my #hEDS Guess its gonna be a lot of hand held gaming and reading for a while