@trekhausen
Am I being too cynical to suggest this is a trial balloon to test possible official responses to a looming disability crisis?

#LongCovid #PEM #pacing #MECFS #Covid #CovidIsNotOver #CovidIsAirborne #SpoonTheory #Spoons #Disability #DisabilityJustice #LongCovidJustice

Just had one of my worst experiences since having #LongCovid - I felt so poorly this morning too after a bad night sleep, but dragged myself to an online video group chat with the NHS Long-Covid Hub. Basically the facilitators said a load of shit about how the symptoms aren't often based on anything actually being physically wrong and there is often no lasting damage (yeah, they said that with confidence) and that it is about "reframming" the brain and its response to symptoms when doing various activities. They tied this into Somatic tracking etc. I was the only one in the group that spoke out on this by saying that I was concerned they were suggesting the symptoms are in our mind rather than being the physical reality they are - for instance, they were citing that tests often say we are fine or the fact symptoms fluctuate as evidence for what they were saying. They responded by coopting terms like #PEM and #pacing but the message was for the majority of people with Long-Covid there is nothing to really worry about as it's not physically harmful and rather about retraining the brain.

I was so mad and angry and felt so isolated. Then the facilitators spent the rest of the session periodically saying things that seemed directly related to me challenging them, for instance this included: "[to the group] I am so glad you have taken it on board and seen it for what it is." "It is neuroscience" "Not going to resonate with everybody" "we are providing evidence based options". Sadly noone else spoke out and backed me up and actually people in the group backed them if anything about how useful it was (I know this will sadly include people that are new to this shit and won't know the history of this well documented by the ME/CFS community). It just added to the sense of isolation I felt. Horrible experience.

This is something I haven't experienced at the Long-Covid Hub before and seems to clearly tie into the government's agenda around Long-Covid and how they want people with Long-Covid to get back into work, as they argue being out of work for longer makes it worse etc. Retrain and reframe those symptoms at work to see the "benefits" of being a "productive" part of the system kind of BS. Oh and of course, the main facilitator has had Long-Covid and they said they used these techniques/approach to recover from it.

In sum, it was all about promoting individualistic approaches and psychologizing Long-Covid. It's the exact same thing many have been doing to people with #MECFS for years; for instance, see here I found from a quick search: https://www.healthrising.org/blog/2019/11/11/somatization-myth-chronic-fatigue-syndrome/

I am glad I said something but sad I was the only one. I also feel gaslighted. And the Hub is the main source of support I get as someone who has had Long-Covid for 3+ years. Thankfully, but also sadly, I know that there are a lot of people here on Mastodon that understand how I feel and why I feel this way.

#Covid #CovidIsNotOver #CovidIsAirborne #SpoonTheory #Spoons #Disability #DisabilityJustice #LongCovidJustice

#spoons , I have none. Sofa, book, phone, nap. Repeat. Bedtime soon.

Fixed a fallen curtain rail. Walked to local shops. Now out of #spoons. Had planned blackberrying, jam-making, cooking. Maybe after lunch...
#PKD
#anaemia
#SoTired

@jjtbsomhorst Mooi als jij altijd de energie er voor hebt. Maar laten we alsjeblieft er ook begrip voor hebben als iemand er even klaar mee is.

Minderheden hebben vaak ook andere shit waar ze mee moeten dealen, dus de #spoons kunnen ook een keer op zijn.

Laten we dan niet zelf ineens onze kont keren naar rechtvaardigheid (dan doe je zelf wat je de ander verwijt: slachtofferrol).

@AAT_transcribes @academicchatter what a fantastic service for #academia #AudioTranscription and those in need of #accessible fair work. Bookmarked for #spoons time!

I hope it's just the hot weather here but I've realized my spoons have been reduced to one class and maybe one other major activity. Still not really too bad, but I huge drop in the last few months

#Spoons #Heat

#Afternoon.

My brain farted and now it’s somehow the middle of the day. Not sure how that happened.

Am in the middle of a complex work task but my brain is scrambled and this whole week has just been a blur. I don’t know if it’s tiredness, exhaustion or what but it’s resorting to reading, playing music and watching YT videos - i can’t do anything else because the #spoons are not there.

I need to eat some lunch at some point so need to feel like I did work and then I’ll eat.

And now I feel guilty for not having the spoons. I went for my guitar lesson yesterday and I think that was all the #spoons I had for doing anything extra.

I don’t know if it’s general overwhelm, laziness or something else.

Someone has stolen all my #spoons
One of these guys:
#PKD
#LiverCysts
#prostate
#radiotherapy
#TongueCancer
#anaemia

"The Three Laws of Thermodynamic Autistic Motion", also known as "Spins, Spoons, and Splines".

https://www.corbden.com/2013/10/splines-theory-spoons-metaphor-for.html

#ReticulatingSplines #Autism #Aspergers #SpoonTheory #Inertia #Spins #spoons #Splines

@audhd I got a surprise today! There are real people out there who have signed up for my Low-Spoonz Newsletter off of www.BZBrainz.com after my April release. I have not yet sent out a newsletter, but I will within Quarter 3. It's titled the "Low-Spoonz Newsletter" for a good reason! You won't hear from me often, only if I have something to share and as I have spoons to share them. #chronicallyill #actuallyautistic #adhd #spoons #spoontheory

Note here that most people agree that too much chicken fat leads to a too-soft bar, but lard makes a pretty solid bar, so a mix of the two is a good idea anyway.
I don't do anything fancy, in part because #spoons, in part because this was meant to save money, not lead to more expenses, but also because this results in a perfectly lovely white bar of soap as is.
No fragrances needed - it will cure to something that smells distinctly of "soap" and not much else.

This pretty much relates how the past while has been for me.

So much new stuff, then going out at the weekend being overwhelmed and ill in a theatre. Increase in optical migraines, flare ups with arthritis, then new scary symptoms that made me go to the doctor. Resulting in now having to wait for tests.

So yeah, not much of anything is making sense at the moment. My spoons are almost gone and the blocks are everywhere.

#MentalHealth #Autism #ADHD #Arthrits #Fibro #Spoons #Overwhelmed

I can't believe I ran out of #spoons before noon...

I'm going out for lunch today. At least I hope I am. I still need to shower and dress. The way I feel that's a lot of #Spoons. Last weekend, I had a flare-up, and I'm still rebuilding my strength. But I don't get to go out to lunch much, and a friend is driving over to see me, so I want to. So if anyone has any spare spoons, please send them my way x
#Fibromyalgia #MeCfs #LongCovid #ChronicPain #NEISvoid #CfsMe

So the friend whose event I missed in Saturday (lack of #spoons) still hasn’t texted me back despite a few messages from my side. I feel so guilty but also know I did the best I could on that day :blobfoxcry2:

You know that amazing feeling of waking up with extra #spoons one day and the next being completely run down...

I dont think they were extra spoons, just normal spoons. But being used to operating on survival mode will have you thinking normal is over the top.

Currently paying for my overtly use of spoons yesterday.

Not sure why but doing chores (and everything else, really) takes so much more effort these days... :bunblanketsleep: Who took my #spoons ???

Today I ran out of #spoons before a social event and had to cancel. Do I feel guilty? Oh heck yeah. But I’m choosing to be kind to myself in spite of it.