#spoonies — Public Fediverse posts

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Changing clothes largely means putting on my clothes on in the morning and taking them off at night, along with washing. I try to avoid it as much as possible apart from that as I try to avoid wasting energy.

I already did it sitting down.

#PwME #Spoonies #MyalgicEncephalomyelitis
#mecfs #longcovid @mecfs @longcovid

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It falls disproportionately on people with conditions that have no definite biomarker or diagnostic test, are frequently misattributed to psychological causes, involve fluctuating symptoms and affect populations underrepresented in clinical research.

#mecfs #pots #longcovid #spoonies #chronicillness
@mecfs @longcovid @pots

Energy Points Chart

https://ltcovh.prod.acquia-sites.com/sites/default/files/2024-02/Energy%20EnvelopeENG.pdf

Modified from BE Ainsworth et al. Compendium of physical activities: An update of activity codes and MET intensities.

#MEcfs #LongCovid #PwME #CFS #Spoonies #Spoonie @mecfs @longcovid

One perk of a mobile home is everything is so close.

Now here on holidays for a full week and no days with over 1000 steps. Includes Saturday where lots of family here for day so had lots of trips to bedroom for 30-minute rest breaks.

My discipline paid off as no significant post-exertional malaise. 🙂

#PwME #MEcfs #longcovid #spoonie #spoonies #chronicillness @mecfs @longcovid

"Navigating Clinical Uncertainty: Practical Tips for ME/CFS and Long COVID Caregivers" by Kim Moy

https://www.caregiverwisdom.net/post/navigating-clinical-uncertainty-practical-tips-for-me-cfs-and-long-covid-caregivers

Her focus in general is on caregivers but most of this article is also relevant for patients

#MEcfs #LongCovid #Spoonies #Spoonie #ChronicallyIll @mecfs @longcovid #POTS @pots

(Not specific to any one disability or illness)

EquipOT has some videos of disability hacks/tips:
https://www.youtube.com/@EquipMeOT/playlists

#disability #chronicillness #spoonie #spoonies #disabilityaid

🧵
"How to Apply For—and Receive—Your SSDI: Long COVID makes it tricky. Know the rules"

https://longcovidmd.substack.com/p/you-may-qualify-for-ssdi

Blog with linked video recording.
Most of the advice is specific to SSDI rather than more generally useful internationally

Also useful for other spoonies

#LongCovid #MEcfs #Spoonies
#Spoonie #POTS @pots #PwME #ME #MyalgicE
@mecfs
@longcovid

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Any other spoonies have a very specific indicator that they're worse than usual?

For me, it's when my elbows ache. The rest of me can ache and it's "fine", but if my elbows are achy, I absolutely need to rest.

#ChronicIllness #spoonies

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

https://liegenddemo.de/#termine

#GoFundMECFS #spoonies #Flensburg

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

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Includes subsections under the category of "Failures in medical training that promote medical gaslighting" with the following headings:

• Insufficient preparation for chronic illness
• Common and serious diseases are neglected in medical training
• Psychosomatic illness
• Inability to accept uncertainty

#MedicalGaslighting #Gaslighting #MedMastodon
@longcovid @mecfs #chronicillness #spoonies #NEISvoid #chronicillnesses #hiddenillnesses

🧵
"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

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"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

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

:boost_requested: Please boost!

Genuine question for the Spoonies, mobile devs, and FOSS people of the fediverse:

I'm currently sitting on an Android project that is ~85% ready for release to the public. It's a medication tracking app. Scheduling, refill reminders, notifications, etc.

- fully FOSS
- no AI involvement
- no account creation
- no unnecessary permissions
- doesn't harvest your data

The intent is to make it available for free. I would happily accept tips and donations toward support and maintenance, or a Pay-What-You-Want model. So the question is, what would you be willing to do to support?

#Android #AndroidDev #Spoonie #Spoonies #FOSS #IndieDev

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“When capacity is finite (& always it is, for everyone, whether we admit it or not) every small demand carries weight. What looks trivial on the surface becomes consequential underneath. Saving a small amount of energy in one place can mean having a little more available somewhere else”

#mecfs #longcovid #spoonie #spoonies
@pots @longcovid @mecfs

As much as I rate #ZenInternet as a ISP, talking to them about a slow connection and getting them to understand my health means I can't be unplugging things on my network and also I wouldn't be phoning them if was just a device on the network or something connected over wifi because that would be dumb is frustrating to say the least.
I thought I had a few spoons to play with today but they are all gone now, retreating back to the bedroom, but the engineer is coming out Friday. #spoonies #mecfs

News Release 9-Mar-2026

Telemedicine remains popular, but who uses it varies widely

https://www.eurekalert.org/news-releases/1119321

“Telemedicine is no longer just a pandemic workaround—it has become a routine part of care delivery,”

#chronicillness #Spoonie #ChronicallyIll #ChronicIllnesses #Spoonies

Years of scapegoating rhetoric has led to ‘envy & resentment’ of those with blue badges, research finds

Note: blue badge = UK name for disabled parking permit

https://www.disabilitynewsservice.com/years-of-scapegoating-rhetoric-has-led-to-envy-and-resentment-of-those-with-blue-badges-research-finds/

Screenshot from AMMES March 2026 Newsletter

#Disabled #Disability #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots

“I really can’t recommend systemic sclerosis as a preventative.”

I was explaining how SSc messes with collagen and causes fibrosis inside and she made the link with far too much wonder and glee “that’s why you have no wrinkles!”

#SystemicSclerosis #autoimmunedisease #spoonies #ChronicIllness

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From: "The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life

#Spoonies #ChronicallyIll #Disabled #Disability
#Chronicillnessblogger #Chronicillnessquotes
@mecfs @longcovid @pots

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"assistive devices, adaptive equipment, whatever term you prefer, they’re not evidence of decline. They’re evidence of a body trying, and of a person choosing to keep living on their own terms."

#Spoonies #ChronicallyIll #Disabled #Disability
#Chronicillnessblogger #Chronicillnessquotes
@mecfs @longcovid @pots

"Rather than holding onto the idea that the only life worth living is one without disease, consider expanding your definition of hope to include connection, purpose, & meaning under any circumstances"

From:
Recap: Support group: Coping with Depression & Emotional Overload
https://batemanhornecenter.org/wp-content/uploads/2026/02/20260217-Support-Group-Recap.pdf

#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

🧵
"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

https://onelifelivedwell.substack.com/p/the-quiet-art-of-extending-a-life

Another thoughtful post from this OT who specialises in ME/CFS & long Covid

She calls such devices "capacity extenders".

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#MEcfs #CFS #PwME
@mecfs @longcovid
#LongCovid #POTS @pots
#Disabled
#Disability

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