#spooniechat — Public Fediverse posts

I'm so embarrassed and so sorry. 😖
#NEISvoid #hEDS #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #spooniechat #fibromyalgia #chiarimalformation #tetheredcord #mutualaid

RE: https://plasmatrap.com/notes/amt3jiihdr

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

@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.

@Aaidanbird I'd love to do that. I miss our weekly #SpoonieChat on the birdsite.

20/
“My Spoons Are Precious/Honor How I Use Them

Spoon theory is a metaphor used to describe the amount of mental or physical energy a person has available for daily activities and tasks. A spoon represents a unit of energy allocated to each exertion. I must use each spoon (unit of energy) wisely so that I don’t run out before the end of the day”

@spoonies #spoonie #spoonies #SpoonieChat #spoonielife #spooniesupport #spooniecommunity #chronicillness

@bennessb Good idea! I've been missing the disabled community here. #SpoonieChat and all those friends.

I've got a couple of pinned posts, but I'm still not sure how to introduce myself.

In the #NEISvoid context, I've been coping with fibromyalgia, chronic fatigue, sleep apnea, and some other autoimmune since my early teens 30ish years ago. I try to make the most of what's going right, but these days I'm short on spoons and hope. Still, supporting others and being heard means a lot.

@cavar I really appreciate(d) the spaces #ActuallyAutistic, #StopTheShock, #NEISvoid, and #PwME hashtags facilitated on Twitter. I also (every now and then) participated in the weekly #AutChat and occasional #SpoonieChat discussions.

@cavar I really appreciate(d) the spaces #ActuallyAutistic, #StopTheShock, #NEISvoid, and #PwME hashtags facilitated on Twitter. I also (every now and then) participated in the weekly #AutChat and occasional #SpoonieChat discussions.

@cavar I really appreciate(d) the spaces #ActuallyAutistic, #StopTheShock, #NEISvoid, and #PwME hashtags facilitated on Twitter. I also (every now and then) participated in the weekly #AutChat and occasional #SpoonieChat discussions.

@cavar I really appreciate(d) the spaces #ActuallyAutistic, #StopTheShock, #NEISvoid, and #PwME hashtags facilitated on Twitter. I also (every now and then) participated in the weekly #AutChat and occasional #SpoonieChat discussions.

@cavar I really appreciate(d) the spaces #ActuallyAutistic, #StopTheShock, #NEISvoid, and #PwME hashtags facilitated on Twitter. I also (every now and then) participated in the weekly #AutChat and occasional #SpoonieChat discussions.