Mastodawn

Hello Mastodon ! 🌞
Après une nuit très difficile et prise d'antidouleurs j'ai fini par annuler le rdv kiné de ce matin 😔
Du coup, c'est repos dans le canapé et recyclage des chutes de feutrine pour de futures créations de jolies choses...dans un meilleur moment 💪🏼
#fibro #douleurschroniques

Tom Kindlon 6d ago

New from Italy:
Case Report: The intersection of psychiatry and medicine: diagnostic and ethical insights from case studies

Free:
https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2025.1576179/full

Looks look sympathetic and interesting on a quick skim

@chronicillness
@spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Frontiers | Case Report: The intersection of psychiatry and medicine: diagnostic and ethical insights from case studies

Frontiers

Chronic Illness Humor Funny Apr 17

#chronicillness #fibro #autoimmune #chronicillnesshumor

Tom Kindlon Apr 16

I found this blog post interesting.

The research found 3 themes relating to loneliness in chronic illness.

It then mentions a writing exercise one can do to analyse these in your own situation.

https://www.psychologytoday.com/ie/blog/chronically-me/202504/the-link-between-loneliness-and-chronic-illness

#chronicillness #chroniclife #Spoonielife #hiddenillness #invisibleillness #Spoonies @chronicillness
@spoonies
@disability
@longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots #dysautonomia @dysautonomia @mecfs
#MEcfs #CFS #PwME

The Link Between Loneliness and Chronic Illness

A recent study does a deep dive into the painful intersection of loneliness and chronic illness.

Psychology Today

Tom Kindlon Apr 15

"Sleeping Well with Chronic Illness" by Ciara Breen. This was organised by the Irish ME Trust

Recording here:
https://youtu.be/15SuEe5UlUY

Slides here:
https://1drv.ms/p/s!AoHfldspRkWU14MZ3X5c8Vz4gr5-VA?e=Pm6gIx

My informal notes:
https://1drv.ms/b/s!AoHfldspRkWU14MsVPPzR94Y4UmWqw?e=d5pKRg

#Sleep #chronicillness @chronicillness
@spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Sleeping Well with Chronic Illness

YouTube

Tom Kindlon Apr 13

@chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Tom Kindlon Apr 12

(Worcester, Massachusetts)
Healthy Controls and people aged 12+ with ME/CFS, #POTS, #EDS, long Covid, etc sought for research study

Image is from MassME April Newsletter

https://www.massmecfs.org/newsletters/922-2025-04-april-newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#PosturalOrthostaticTachycardiaSyndrome @pots @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

2025-04 April Newsletter

Massachusetts CFIDS/ME & FM Association

Tom Kindlon Apr 11

"Cards2Warriors has a special program called Happy Mail, where they send snail mail cards to those [who are ill] who need encouragement & cheer"

Links:
https://www.cards2warriors.org/
https://www.cards2warriors.org/happy-mail

Image from Institute for Neuro-Immune Medicine e-bulletin

#chronicillness @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Cards2Warriors

People who are suffering from chronic pain, illness, and rare disease can sign up to receive cards of encouragement and hope.

Cards2warriors

Arend (they) 🏳️‍⚧️🍉Apr 8

I gotta make recording easier for myself, especially with my spoons these days. Most days #fibro wears me out before I can get started.

As much as I love capturing guitar and voice at once, I think I gotta start doing more overdubbing of the two separately, and I'm struggling against the shame of doing so as a folkie. I'm sure I'll get over it.

Fellow #DisabledMusicians, please drop your tips for music-making.

#disabled #DisabledMusician #DisabledArtist

FibroJedi Apr 7

Hi All, I don't normally leave it this late to get back on the socials after a Sunday. But my pain levels are terrible.

One of the main reason is that the pharmacy has...three times failed to get the right slow-release medication to us.

I take set doses of pain and muscle-relaxing meds through the day. But I also have slow release ones that work between the doses (which are not effective after 2½-3hrs).

The slow-release one is strong so, currently I'm struggling to ignore the #fibro #pain.

Tom Kindlon Apr 16

I found this blog post interesting.

The research found 3 themes relating to loneliness in chronic illness.

It then mentions a writing exercise one can do to analyse these in your own situation.

https://www.psychologytoday.com/ie/blog/chronically-me/202504/the-link-between-loneliness-and-chronic-illness

Show thread

Tom Kindlon Apr 17

2/‬

‪“The study authors underscore that we wrongly tend to see loneliness as an individual problem that can be corrected solely through individual behavioral changes. Rather, they assert that loneliness occurs due to intertwining individual and societal factors.”‬

‪#chronicillness‬ #spoonies
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

Show thread

EdibleFuchsia Apr 17

@tomkindlon @chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs Well that seems like a truly unsurprising finding?!?

Show thread

EdibleFuchsia Apr 17

@tomkindlon @chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs but no, it's a very interesting and uplifting paper- very validating of our situation in life.

Full text here: https://www.sciencedirect.com/science/article/pii/S0277953624000406

Show thread

Tom Kindlon Apr 17

3/
"Theme 1: Loneliness as invisibility of self"

From:
"The Link Between Loneliness and Chronic Illness: A recent study explores the intersection between loneliness and chronic illness."
https://www.psychologytoday.com/ie/blog/chronically-me/202504/the-link-between-loneliness-and-chronic-illness

#Spoonie #ChronicallyIll
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

The Link Between Loneliness and Chronic Illness

A recent study does a deep dive into the painful intersection of loneliness and chronic illness.

Psychology Today

Show thread

Tom Kindlon Apr 17

4/
"Theme 2: Loneliness as being left behind"

#Spoonie #ChronicallyIll
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

The Link Between Loneliness and Chronic Illness

A recent study does a deep dive into the painful intersection of loneliness and chronic illness.

Psychology Today

Show thread

Tom Kindlon Apr 17

5/
"Theme 3: Loneliness as being a spectator rather than a player"

#chroniclife #Spoonies
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

The Link Between Loneliness and Chronic Illness

A recent study does a deep dive into the painful intersection of loneliness and chronic illness.

Psychology Today

Show thread

Tom Kindlon Apr 17

The full paper that is cited in this blogpost can be read for free here

“There but not really involved: The meanings of loneliness for people with chronic illness”
https://www.sciencedirect.com/science/article/pii/S0277953624000406

#chronicillness #loneliness
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

Show thread

Tom Kindlon Apr 17

7/
From full paper:

“The fluctuations of chronic illness meant that self- and social-identities were continuously in flux, with participants feeling caught between communities of illness/disability and wellness.”

#chronicillness #spoonies
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

Show thread

Tom Kindlon Apr 17

From:
“There but not really involved: The meanings of loneliness for people with chronic illness”
https://www.sciencedirect.com/science/article/pii/S0277953624000406

#chronicillness #chronicallyill
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

Show thread

Tom Kindlon Apr 17

From:
“There but not really involved: The meanings of loneliness for people with chronic illness”
https://www.sciencedirect.com/science/article/pii/S0277953624000406

#chronicillness #chronicallyill
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

Show thread

Tom Kindlon Apr 18

10/

From:
“There but not really involved: The meanings of loneliness for people with chronic illness”
https://www.sciencedirect.com/science/article/pii/S0277953624000406

#chronicillness #chronicallyill
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

Show thread

Tom Kindlon Apr 18

11/

From:
“There but not really involved: The meanings of loneliness for people with chronic illness”
https://www.sciencedirect.com/science/article/pii/S0277953624000406

#chronicillness #chronicallyill
@chronicillness @spoonies @disability @longcovid @fibromyalgia @pots @dysautonomia @mecfs

Show thread

ImmedicableME Apr 18

@tomkindlon My partner was recently gone for 7 weeks to care for her elderly mother. In that time, I spent about 60 minutes in the presence of another human being. It did a lot of damage to feel so completely isolated and alone. I watched my physical and mental health decline. I have been fortunate so far to have people supporting me through my illness, but this time alone made me realize how serious it is to leave people in isolation. We have to figure out ways to help each other.

Show thread

Tom Kindlon Apr 18

@ImmedicableME Very sorry to hear that. Good point.