Taking breaks from writing literally every 5 minutes because if I don't I'll fall asleep again. Up to ~200 words for the morning, somehow. #ChronicFatigue #BrainFog #SpoonieLife
Taking breaks from writing literally every 5 minutes because if I don't I'll fall asleep again. Up to ~200 words for the morning, somehow. #ChronicFatigue #BrainFog #SpoonieLife
"'Twirl With Me, Mama!' by Melissa Beardall & Rebecca Nichols is a moving children’s book that shines a compassionate light on families living with #chronicillness ."
https://hazymaybooks.com/about-the-book/
See next post for more information on this book
@chronicillness
@spoonies #parenting #chroniclife #ChronicPain #Spoonielife
#hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots
1/
Recap of professionally-facilitated support group "Surviving Invalidating Relationships & Experiences"
https://batemanhornecenter.org/wp-content/uploads/2025/03/20250311-Support-Group-Recap.pdf
"by becoming sick with a #chronicillness we become a minority...based on the prevalence rate of these conditions"
#Spoonies @longcovid
#LongCovid @mecfs
#MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots @chronicillness
@spoonies
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
Awww! Ich hab seit heute einen Spoon mehr! Kam heute als Überraschung mit der Post, sehr sweet!
Huargh. Nächsten Sonntag Geburtstag. Wann ist das passiert?!
Irgendwer sollte diese Wohnung noch putzen und aufräumen und ich crashe ständig, weil diese ganze Augen-Laser-OP-in-Klinik-fahr-und-ums-Kind-drumrum-plan-Geschichte mich fertig macht. Mir ist schwindlig und elend und ich will am Sonntag doch nur nett und distanziert mit lieben Leuten Tee im schattigen Hinterhof trinken und köstliche Dinge fressen.
(Sorry, not sorry für #Mimimi - ihr müsst damit leben mein Ventil zu sein. Kussi auf Bauchi.)
6/
“It will mean a lot to your friend if you can be adaptable and creative about how you connect with them, stay in touch and provide support.”
#chronicillness #spoonie #spoonielife #chroniclife
#mecfs #longcovid
@mecfs @longcovid @spoonies @chronicillness
Blogpost giving some tips on how to maximise the usefulness of appointments with doctors.
https://www.carermentor.com/p/how-to-close-patient-doctor-disconnects
#DoctorPatientRelationship @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
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.
#chronicillness #chroniclife #Spoonielife #hiddenillness #invisibleillness #Spoonies @chronicillness
@spoonies
@disability
@longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots #dysautonomia @dysautonomia @mecfs
#MEcfs #CFS #PwME
1/
An example of the thoughtless or insensitive comments people with chronic illnesses can sometimes hear
From a blog post by an Irish woman with ME who has become a published writer
https://solongasicanbreathe.wordpress.com/2025/04/14/walking-ambling-stumbling/
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@chronicillness
@spoonies
@disability
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@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
"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"
Image is from April 2025 AMMES Newsletter
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC @chronicillness
@spoonies
@disability
@disabilityjustice
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
"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
I suspect very few people appreciate how much patience and discipline it takes to rest.
To do nothing.
To allow yourself to be bored.
To let socializing wait.
To ignore your to-do list.
To tell yourself over and over again:
'I am not doing nothing I am resting. Resting IS a verb, and it is the thing I most need to do right now."
#spoonieLife #burnout #restIsAVerb #selfCare
Mit Partner und Kind unserer Bürger*innenpflicht nachgekommen und unsere antifaschistische Haltung öffentlich zum Ausdruck gebracht.
Haben uns natürlich direkt zu Anfang eine alte, weiße Querdenkerinnen-Frau (TM) eingetreten, die mit uns über Frieden und unseren Hass (Hä?) auf sie diskutieren wollte. Mehrfache laute, freundlich formulierte Aufforderungen, mich und mein Kind bitte in Ruhe zu lassen und auf Abstand zu gehen, ignorierend. Nach eigener Aussage Lehrerin (ich hoffe verrentet und nicht weiterhin übergriffig Kinder belehrend). Ansonsten war es cool, die Musik war gut und nach und nach kamen immer mehr Leute.
Welp. Thought I would emerge from my lair again today, take my car to the drive-through lube etc place, catch a little fleeting sun, reward myself with some takeout dinner... but the CrankyBod decided the two previous days of activity were plenty and pitched a fit, so now I'm at home listening to my knees and shoulders whine as I drink coffee and screw around on the internet. Oh well.
Morgen früh Arzttermin und ich bin schon seit 2 Tagen durch.
On the home front: I thought I could get a couple of chores in today, but the CrankyBod<tm> has emphatically responded negatively, so I am relieved said bod is more merciful than my brain.
(US) Telehealth Update
Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:
https://massmecfs.org/newsletters/919-2025-03-march-newsletter
@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@longcovid #LongCovid #MEcfs
@mecfs
February 18, Support Group on When Things Get Tough – Managing Guilt and Shame with #chronicillness
Recap
https://batemanhornecenter.org/wp-content/uploads/2025/02/202050218-Support-Group-Recap.pdf
@chronicillness
@spoonies
#neisvoid
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
@longcovid
#LongCovid @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #Migraine @migrainechatgroup @migrainechat @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM