#neisvoid — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #neisvoid, aggregated by home.social.
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I wonder if it'd be worth it to try and fundraise for a new cushion, backrest, and a power assist for my wheelchair. The new one isn't going to come in until January or later & I still gotta get to school in the meantime, but also $$$.
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💔 Today is Friday, and my children went without their Friday meal. There is nothing left on our table
Please, don’t let them sleep hungry. 🙏 Even €1 can help us put food on the table today. If you can’t donate, please share.
#Palestine #HelpGaza
@mutualaid @mutual_aid @MutualAidVisibility @disability @blackmastodon @edendestroyer
#MutualAidRequest #disabilitycrowdfund #disabledmastodon #HelpFolksLive2026 #NEISvoid #blackmutualaid #emergencycrowdfund #disabilityaid
https://chuffed.org/project/178829
🫶🫶❣️ -
💔 Today is Friday, and my children went without their Friday meal. There is nothing left on our table
Please, don’t let them sleep hungry. 🙏 Even €1 can help us put food on the table today. If you can’t donate, please share.
#Palestine #HelpGaza
@mutualaid @mutual_aid @MutualAidVisibility @disability @blackmastodon @edendestroyer
#MutualAidRequest #disabilitycrowdfund #disabledmastodon #HelpFolksLive2026 #NEISvoid #blackmutualaid #emergencycrowdfund #disabilityaid
https://chuffed.org/project/178829
🫶🫶❣️ -
Really looking forward to Thursday. I get to test drive a power assist for my wheelchair. If I like it, the occupational therapist is gonna go to bat with my insurance for it to be covered, and then I'll be able to use my wheelchair to go to school.
I have enough upper body strength for short trips, or long trips with a long rest, but not daily, but having my chair will save a ton of my energy and pain levels, esp if I could get a power assist
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RE: https://vis.social/@lia_pas/116920216340348395
Unbound is now available to watch on YouTube! https://www.youtube.com/watch?v=mxK6UKtWuLc
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RE: https://vis.social/@lia_pas/116920216340348395
Unbound is now available to watch on YouTube! https://www.youtube.com/watch?v=mxK6UKtWuLc
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nocturnal activities continue..
My fucking brain has apparently decided that sleep before 5 AM (except for brief naps in extreme cases) is banned. Most of the time it’s not due to anything I’m doing, it’s just…spinning. And it refuses to shut the fuck up. That and I can’t get comfortable until I’m so exhausted my body gives out and I fall asleep in whatever crazy position I happen to be in. Moonie has taken it upon herself to shove her wet face into my everything at 4 AM exactly, as well, regardless of whether or not I am trying to sleep, so she’s contributing to the problem. Why it’s always 4 AM I have no idea. I have no problem giving her attention AT ANY OTHER TIME OF DAY. Yet this cat chooses EXACTLY WHEN I’M TRYING TO SLEEP to seek attention from me and QUITE LITERALLY STICK HER FACE IN MINE. This calico child has zero concept of personal space or boundaries and I love her dearly but this is an increasingly aggravating issue. So here I am at 1:40 AM, a better time to try and be in my everything, bitching about the sleep issues that plague me and she’ll likely try to insert herself into my skin in about an hour and a half. What the fuck.
Yeah. Anyway, wish me luck.
-Allēna
#insomnia #NEISvoid #SliceOfLife -
For more information about this film, including cast names and bios, see director Sara Nesson's website:
https://www.saranesson.com/unbound
I've also attached an important disclaimer (see image) from the website.
2/2
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For more information about this film, including cast names and bios, see director Sara Nesson's website:
https://www.saranesson.com/unbound
I've also attached an important disclaimer (see image) from the website.
2/2
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"Unbound: Illness is not the end of dance"
A short film
(about 6 1/2 minutes)"Twenty bodies. One thread of movement. Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality."
https://www.youtube.com/watch?v=mxK6UKtWuLc
For blind or visually impaired viewers there's an audio track with descriptions of the movements.
1/2
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"Unbound: Illness is not the end of dance"
A short film
(about 6 1/2 minutes)"Twenty bodies. One thread of movement. Unbound is a short dance film created by individuals living with ME/CFS and/or Long COVID, exploring the tension between constraint and expression, stillness and vitality."
https://www.youtube.com/watch?v=mxK6UKtWuLc
For blind or visually impaired viewers there's an audio track with descriptions of the movements.
1/2
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RE: https://vis.social/@lia_pas/116920216340348395
Unbound premieres in one week!
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RE: https://vis.social/@lia_pas/116920216340348395
Unbound premieres in one week!
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A beautiful essay on Unbound from a health humanities perspective
https://medicalhealthhumanities.com/2026/07/20/grace-under-constraint-unbound-as-health-humanities/
Join us for our film premiere on July 29
https://www.eventbrite.com/e/unbound-global-premiere-live-qa-tickets-1990987249459
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A beautiful essay on Unbound from a health humanities perspective
https://medicalhealthhumanities.com/2026/07/20/grace-under-constraint-unbound-as-health-humanities/
Join us for our film premiere on July 29
https://www.eventbrite.com/e/unbound-global-premiere-live-qa-tickets-1990987249459
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What if movement didn't have to be big to matter? Unbound is a film woven from 20 bodies, 20 stories, and 1 thread of connection.
Join us for the premiere on July 29th at 6:30 PM ET. https://www.eventbrite.com/e/unbound-global-premiere-live-qa-tickets-1990987249459
A reflection on my process for this film on my blog: https://liapas.com/2026/07/11/unbound-a-dance-film/
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What if movement didn't have to be big to matter? Unbound is a film woven from 20 bodies, 20 stories, and 1 thread of connection.
Join us for the premiere on July 29th at 6:30 PM ET. https://www.eventbrite.com/e/unbound-global-premiere-live-qa-tickets-1990987249459
A reflection on my process for this film on my blog: https://liapas.com/2026/07/11/unbound-a-dance-film/
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Ugh I do not have spoons to shower, and yet if I am not showered for all of tomorrow's errands I am going to be incredibly depressed, and I leave too early to put it off til then.
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Ugh I do not have spoons to shower, and yet if I am not showered for all of tomorrow's errands I am going to be incredibly depressed, and I leave too early to put it off til then.
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Please share, if you can. I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund
RE: https://plasmatrap.com/notes/aoctlai1vp -
Please share, if you can. I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund
RE: https://plasmatrap.com/notes/aoctlai1vp -
I've been doing surveys on a site called Prolific & just signed up with Cloud Research & Paid Viewpoint today. It's not a lot, but it's how I made it thru June. There are AI tasks but you can ignore/filter them out. Figured I'd put it out there
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In my feels about the weird ways people react to chronic illness stuff and often just don't believe that you not being available the way they want when they want is a snub, so then they start snubbing you.
There's just so much loss... #NEISvoid
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In my feels about the weird ways people react to chronic illness stuff and often just don't believe that you not being available the way they want when they want is a snub, so then they start snubbing you.
There's just so much loss... #NEISvoid
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I came across a new BPSM term today - 'neuroplastic' (as in 'MCAS is neuroplastic') - not really a new term, but new in this context. Another way of saying you can think yourself better.
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Friends in the #PwME circle, I was trying to find an article but I'm drawing a blank. It was about why normal sleep hygiene doesn't work for someone with ME/CFS, and was written by a medical ME expert I think? If anyone knows what I'm referring to, please drop the link!
#NEISvoid #LongCovid -
Please sign this petition to prevent the NHS from killing another very severe ME patient by their ignorance and lack of empathy and respect for their patients and patients' carers/loved ones. It must be stopped. #PwME #VerySevereME #NEISvoid #LongCovid #CCI
Sign the Petition -
Please sign this petition to prevent the NHS from killing another very severe ME patient by their ignorance and lack of empathy and respect for their patients and patients' carers/loved ones. It must be stopped. #PwME #VerySevereME #NEISvoid #LongCovid #CCI
Sign the Petition -
Shedding Light on FIRE Syndrome: An Overview of a Novel Condition in Eosinophilic Esophagitis [2025]
https://www.mdpi.com/2076-3417/15/11/6375Like this redditor - I'm triggered by inhaling VOCs
https://www.reddit.com/r/EosinophilicE/comments/1cjbdld/fire_like_reaction_from_something_inhaled/If I get exposed to VOCs, my reactivity to food increases - so not exactly like the OP on the reddit thread.
#EosinophilicEsophagitis #NEISVoid #AirPollution #EnvironmentalHealth
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Overdid it cleaning yesterday & getting my kid together this morning, so now I'm stuck downstairs 😭 at least there's food, and my computer, which I moved downstairs so I could have an easier time studying when that time comes. Sucks to not be able to walk around much
#disability #disabled #NEISvoid -
CW: Health/vision neg
I'm 57 years old, and I can't read normal print worth a damn anymore, much less fine print, even with glasses.
I used to be able to by concentrating, but not anymore. Sometimes holding it close under a very bright helps, but not always.
If there's something I have to read, I often end up passing it to Jalan to ask what it says.
My progressives are some years old at this point (5?), but my visual clarity seems to have lost a lot in just the past few months.
And my severe #MECFS would hardly tolerate a vision exam, much less something like cataract surgery (if that's the issue -- I know I've had them growing for years).
Fuck.
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"What changed was not the existence of invisible illness.
What changed was the number of people experiencing it all at once.
Once millions of previously healthy people began experiencing chronic exhaustion, cognitive dysfunction, and functional instability simultaneously, the limitations of the healthcare system became far harder to dismiss."
#MEcfs #LongCovid #CovidIsNotOver #ChronicIllness #InvisibleIllness #NEISvoid #Healthcare