Mastodawn

4/
“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

Sp4rkR4t

6d ago

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

Tom Kindlon Mar 10

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

Tom Kindlon Mar 7

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

Kymberly Mar 6

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

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

#systemicsclerosis #autoimmunedisease #spoonies #chronicillness

Show thread

Tom Kindlon Mar 2

3/
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

Show thread

Tom Kindlon Feb 28

2/
"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

Tom Kindlon Feb 28

"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

Tom Kindlon Feb 28

🧵
"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

Tom Kindlon Feb 28

🧵
Another thoughtful blog post from this blogger:

"Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong). It’s complicated!" by K. Johnstone

https://mecfs.substack.com/p/some-people-feel-validated-by-an

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