I'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

Hey sleep disorder friends, I need advice and I’m looking for other folks’ experience. Pls boost? #SpoonieChat #SleepDisorder

I have a REM movement disorder and wake up a lot in the middle of the night. Gabapentin helped a lot, but also made me dumber so I had to discontinue.

Doctor recommended looking into Requip (ropinirole). Looks like it’s a dopamine agonist and often works for a short while and then makes the problem worse?

This interview with actor/activist Matt McGorry about Long Covid & everything we could be doing better to protect disabled people is simply excellent.

(Minus some copy editing errors on the Guardian's side, *gros soupir*)

The way Matt talks about the cognitive effects, the physical ones, are so intensely familiar. I've been, I am, exactly where he is.

"As an able-bodied person, you trust that your doctor is going to steer the ship if something pops up. But if I were to wait for them and not be proactive, my health would have continued to decline. So, for me, it looks like reading studies, following people who are at the forefront of the science, and cross-referencing with other people in the [long Covid] community. (…) We share resources and talk about what’s working and what’s not working, and how to navigate the systems.”

Link: https://www.theguardian.com/wellness/ng-interactive/2024/dec/02/matt-mcgorry-long-covid (Archive: https://archive.is/Z2eIb)

#Covid19 #LongCovid #MECFS #ChronicIllness #Spoonie #SpoonieChat #CovidIsAirborne

Spoonie // chronically ill friends, particularly #pwME, if you've ever been on Risperidone I'd be grateful to hear about your experiences.

I have moderate ME/CFS and my psychiatrist and I are considering Risperidone for my insomnia and depression that are comorbid with refractory OCD.

#actuallyOCD #spooniechat #medicine

@JessTheUnstill It did seem a bit too far when we started the group chat on Twitter's weekly #SpoonieChat a couple of years ago. But I came around to it. You're called lazy when you're actually just recognizing your own limits and conserving your spoons.

In any case, I fully agree that it's the moral responsibility of a wealthy society to provide everyone with basic human necessities.

I've never had pain that feels like burning before, but my left side feels like it's ON FIRE. That could be my Endo, right? I'm scared my Endo is getting worse, but I'm even more afraid I'm developing yet another illness or comorbidity.

Such a pleasant way to be woken up in the middle of the night 🙃

#Endometriosis #SpoonieChat #NEISvoid #Painsomnia #ChronicPain