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#chroniclife

Cosmic CollectiveCosmicCollective
2026-01-07

For those of us who are disabled, the struggle is so often between "Do I do these tasks/errands now, even though my pain and fatigue is high and I don't know if I'll be able to complete them, or do I put it all off until tomorrow but risk the distinct possibility that I will feel even worse, still not be capable, then wish I'd attempted the things today."

Irish ME/CFS AssociationIrishMECFSAssociation@mastodon.ie
2025-12-31

(Not ME-specific)

"Cost-of-disability payment a priority for 2026, says social protection minister"

"Dara Calleary said he wanted to see a budget proposal provided to him before the summer"

irishexaminer.com/news/politic

#Disabled
#Disability
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Tom Kindlontomkindlon@disabled.social
2025-12-27

Bateman Horne Center's "'Coffee'" with a Clinician: Pacing for Holidays and Special Events"

Recording
youtube.com/watch?v=BNZ563Uktaw

Slides
batemanhornecenter.org/wp-cont

Transcript
batemanhornecenter.org/wp-cont

I haven't watched it but slides seem sensible

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

"Coffee" with a Clinician: Pacing for Holidays and Special Events Bateman Horne Center 16k subscribers Subscribe 14 Share Save Clip 244 views 17 Dec 2025 Holidays and special events can be especially challenging for people living with ME/CFS, Long COVID, and other infection-associated chronic conditions. In this December "Coffee" with a Clinician session, occupational therapist Amy Mooney, OTR/L, and physical therapist Melinda Maxwell, PT, DPT, share practical, compassionate strategies for navigating these moments while protecting your health. This conversation explores how pacing, planning, and prioritizing can help reduce post-exertional malaise (PEM) and support meaningful participation, whether that means attending part of an event, connecting briefly with loved ones, or finding alternative ways to stay engaged. In this session, we discuss: • Why holidays and special events increase physical, cognitive, sensory, and emotional exertion • Breaking events into manageable pieces and identifying your “golden nugget” • Planning rest as a therapeutic, non-negotiable intervention • Recognizing early signs of pushing beyond your energy envelope • Communicating boundaries and needs with family, friends, and providers • Coping with grief, loss, isolation, and emotional exertion during the holidays • Strategies for rest, regulation, and recovery before, during, and after events
Chronic Illness Humor FunnyChronicIllnessHumor
2025-12-16

9 am [a tetris board and the tall rectangle shape is about to fit perfectly in the tetris board] 5 pm [the tall rectangle shape lands on top of the blocks next to the hole instead]
Tom Kindlontomkindlon@disabled.social
2025-12-07

See post #2 for a vaguely related comment from me on orthostatic intolerance

#POTS @pots #OI #OrthostaticIntolerance #chronicillness #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid

1/

When my chronically ill friends and I finally meet in person. Image of lots of women in white gowns lying down on marble slabs at a party or something similar
Tom Kindlontomkindlon@disabled.social
2025-12-07

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

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

The Unseen Holiday Energy Drainers When Living With Chronic Illnesses @AwarenessforPOTSies Sensory overload Waiting in long lines Preparing meals Traveling to gatherings Sitting for long periods of time Managing invisible symptoms Triggering conversations Reminders of losses and grief Temperature fluctuations
Tom Kindlontomkindlon@disabled.social
2025-12-01

#chronicillness

#chroniclife

#ChronicPain

#Spoonielife

#hiddenillness

#invisibleillness

#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

#ChronicIllnessMemes

Chronic illness awareness Dear Santa, This Christmas I would like a doctor that understands my Chronic Illness Image of Santa
Tom Kindlontomkindlon@disabled.social
2025-12-01

Opinion piece on the word "journey" as a problematic euphemism for chronic illness.

"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."

statnews.com/2025/11/25/chroni

Screenshot from latest Science for ME weekly update

#LongCovid @longcovid #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

STATNews I have long Covid. Don't call my chronic disease a 'journey' Opinion piece by professor emeritus Peter Swensson on the word "journey" as a problematic euphemism for chronic illness. "Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."
Chronic Illness Humor FunnyChronicIllnessHumor
2025-11-30

absence of a diagnosis does not guarantee the absence of an illness - mamoru - if someone you know has oeen been suffering yet a doctor says nothing is wrong, which has happened to a majority of chronically ill people at some point, you have a choice. you can either believe doctor that you probably never met, or the person suffering. and I cannot emphasize enough how absolutely damaging it is for a sick person to not be believed. the believe
Tom Kindlontomkindlon@disabled.social
2025-11-29

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs @longcovid
#LongCovid #POTS @pots

 Cat Lady's Quilt. catladysquilts +Chroniclllness 06/28/25 This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all.
Irish ME/CFS AssociationIrishMECFSAssociation@mastodon.ie
2025-11-27

Irish Examiner letter from one of our members

She highlights

-difficulty she had in obtaining a payment

-she gets less money because she is means tested both her and her husband's income/assets
(sadly this issue is not specific to Ireland)

irishexaminer.com/opinion/your

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Disabled
#Disability
#neisvoid
#chronicillness
#chroniclife

Letters to the Editor: Disability allowance system has let me down A reader says an internal audit needs to be carried out on the disability allowance sector Letters to the Editor: Disability allowance system has let me down Unlike jobseeker’s benefit, disability allowance is means tested. Thu, 27 Nov, 2025 - 01:00    In response to Paul Hosford’s article — ‘Disability allowance appeals surge as thousands of rejected applications later approved’ ( Irish Examiner, November 25) — I too would love to see an internal audit carried out on the disability allowance sector regarding their appeals process.
Malka BethBrahmaBelarusian@regenerate.social
2025-11-25
Scarlet 💋 {$28/100}hotwifescarlet.bsky.social@bsky.brid.gy
2025-11-21
Chronic Illness Humor FunnyChronicIllnessHumor
2025-11-20

ripeteeth on tumblr - i simply need everyone to to understand that i am tired all of the time. literally at all moments. if i ever go somewhere and do something, it is not because i am somehow full of energy, but instead that i have carefully stored up all of of my little bits of energy like a dragon collecting jewels, and am now vaporizing them all at at once
Chronic Illness Humor FunnyChronicIllnessHumor
2025-11-19

spiderman in his bed with medicine and water on his beside table - wastin' away again in chronic illness-ville - searchin' for my lost prescription of pills
Chronic Illness Humor FunnyChronicIllnessHumor
2025-11-18

"Chronically ill people like 4-5 usable hours in a day" [the you guys get meme where the kid is like wtf and it says 'you guys get usable hours?' MyBodyIsTryingToKillMe.com You Guys Get Usable Hours?'
Chronic Illness Humor FunnyChronicIllnessHumor
2025-11-18

The human body is incredible. It's like, "oh, you're fatigued & shaky? Here, enjoy this anxiety and depression too." MyBodyIsTryingTokillMe.com
Chronic Illness Humor FunnyChronicIllnessHumor
2025-11-16

@allietrann - Someone said this illness is like Life in a glass coffin where you watch the flowers people give you dwindle down to zero.
Chronic Illness Humor FunnyChronicIllnessHumor
2025-11-15

Had one good day, and now everyone thinks I’ve been gaslighting them
Chronic Illness Humor FunnyChronicIllnessHumor
2025-11-15

>>Satire - This Asshole Doctor Says Exercise & A Healthy Diet Could Help Lessen Symptoms - pic of doctor and patient - mybodyistryingtokillme.com

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