Wenn alles klappt, schaffe ich es morgen das erste Mal selbst zur #Liegenddemo seit Erkrankungsbeginn vor 8 Jahren. Wer kommt mit? 👀

https://liegenddemo.de/#termine

#GoFundMECFS #spoonies #Flensburg

Ok #spoonies I need to pick brains about daily routine/pacing.

I used to have a good rhythm of getting up about the same time, coffee and meds until I got going, then be active (brain or body or errand, depending on functioning) then focus on rest.

The switched from prednisone to hydrocortisone has me waiting for the morning cortisol to kick in. I don't want to push when I'm blarg, but going back to bed feels like a loss of rhythm.

How do you use behaviour cues to run body cycles?

Hi there,

I just wanted to surface a Reddit post here on the fediverse. A very severe/extreme ME/CFS sufferer is currently in a precarious situation and needing financial support.

Her name is Ali and you can read more about her situation on Reddit here:

https://www.reddit.com/r/cfs/comments/1t11zip/fundraiser_for_ali_veryextremely_severe_me/

Thanks.

#MECFS #MyalgicEncephalomyelitis #CFS #MyalgicE #ChronicIllness #ChronicFatigue #ChronicFatigueSyndrome #spoonie #spoonies

Gluteus medius is a pain to have cramped and become inflamed, and to have had physio on, with referred twinges around and through the hip into the thigh. It was clear where the edges gave way to the piriformis though - those too familiar sciatic tendrils reached toward the ankle. But those only get angry when poked.

Most of the physios at the reha zentrum have magical hands, and I’m grateful they have space for chronic treatments, and not just joint surgery recoveries - their primary clientele.

#spondyloarthritis #spoonies

🧵
"How medical training promotes medical gaslighting" by K. Johnstone

https://mecfs.substack.com/p/how-medical-training-promotes-medical

This is not illness specific.

#chronicillness #hiddenillness #invisibleillness @longcovid
#LongCovid #MEcfs
@mecfs #ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

1/

"Medical gaslighting is serious, harmful, and out of control: I’ve been working through what medical gaslighting is, how we should talk about it, and how it should be dealt with. Here’s where I’m at." by K. Johnstone

https://mecfs.substack.com/p/medical-gaslighting-is-serious-harmful

#MedicalGaslighting #neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

An 80cm loom is a massive workout for the upper back and arms when you’re short like me (arm span is 1.5m), and wrists when using a tapestry beater to tighten everything up.

The jersey rag run has begun - two sheets worth of rags to go. This was all I could manage today though before my spine started saying nope.

Glad to see progress on a project started years ago. It got wider than anticipated!😄

#weaving #FiberArts #spoonies

Quilt is bound (hand stitched the top binding with various multi-coloured cottons. Nothing is straight or even, so the puffiness hides a lot of that - I don’t want to completely flatten it.
I’ll add slow ‘big stitch’ quilting (a la sashiko) with fine perle cottons gradually, at least in the big border, to tone down and anchor some of that wooly puffiness before it gets de-furred and washed and properly photographed.

But for now, I can use it as a big warm blanket.

#SlowQuilts should be a tag for #spoonies :-)

#quilting #patchwork #FiberArts