#spoonie

1 day ago

Rise and shine, furriends! Embrace the pawsibilities of the day ahead. Take a moment for self-care and don't furget to pawsitively start your day with your meds, meow! Wishing you a fabulous day filled with purrs and joy!
#morning #morningall #spoonie #positivity #canary #MOTD nya~

#DrivebyPhotography #river #spoonie #SpoonieLife #QueerSpoonie #AtmosphericRiver #oregon

2 days ago

First official photo with the new phone, and the camera is obviously not where it was on my old one RIP. The newbie is also a bigger, heavier slab of phablet, so I need to work a little harder to stabilize the thing with my sometimes cranky hands. But in any case: here's what the local big river looks like after being dumped on by the recent atmospheric river.

The blurry tip of my finger can be seen on the left, photobombing this shot of a tree-lined riverside bike path, where the leaves are off the trees and the river is running full, fast, and muddy under a sky full of rain clouds.

yes, it's me, liza 🇵🇷 🦛 🦦

3 days ago

REAL #Spoonie #chemo TALK
today i spent the day on shenanigans because, as a #chronicPain #IBS sufferer, am trying to process what am feeling since i started taking the Omeprazole.

for years i've complained of stomach related pains; but i rarely have reflux. it's all been swelling & distention, most specifically the area right at the diaphragm.

am now convince this should be considered reflux even if there's no discernible backwash. i should have this Rx years ago... /1

Shiny Amygdala, ph.D

3 days ago

Landlord came in today with maintenance. Saw the mold and blamed us for it being there even though there's a leaky gutter on the other side of the closet wall. Our closet was tidy. I keep my mobility scooter in there and we store one of the children's extra medical supplies in there, protected inside black plastic garbage bags. The landlord saw what was in the bags because two of them were open and the medical supplies were inside. He literally called our belongings "trash" and that the mold was there because of all our "garbage" (medical supplies and my mobility scooter)

The maintenance man had to saw a hole in the wall and and look around.

He covered it with plastic and left.

We aren't hearing word back about when they are finishing the repair or what to expect.

We need to file a claim with our renters insurance because we had to throw out all the families shoes and winter boots, 4 coats and $300 worth of medical supplies that we were storing in there, because it was all covered in that mold.

The landlord called our belongings trash, all while tossing our things out of our closet (our belongings that were stored in there are ruined from mold)
We video and audio recorded the entire interaction

Here's what our wall looks like now, and we are expected to clean up the drywall and mold mess they left behind

#LandLords #Michigan #rent #HousingCrisis #disability #discrimination #CivilRights #Housing #ChronicIllness #Spoonie #Section8 #Families

View of inside entryway closet shows a large square hole cut into drywall
Dust and dirt are on the floor beneath it.

The hole is covered with clear plastic

#Spoonie #Spoons #spoontheory #China

5 days ago

🍇 https://www.twitch.tv/chronicallykiki 🍇
Final Fantasy XIV
#kikistreams #spoonie #live2d #vtuberuprising #bunnyvtuber #twitchaffiliate #smallstreamers #envtuber #vtuberen #indievtuber #vtuber #finalfantasyxiv #ffxiv #finalfantasy14 #ff14 #viera #viqote

Lightning Duck

5 days ago

You can save your spoons by using one that won’t fall in your soup

Lightning Duck

5 days ago

The Chinese were clever enough to invent a spoon that won’t slip into your soup

#China #Cooking #spoonie #spoons

Lightning Duck

6 days ago

Ugh, I want to get up, have breakfast and get my day going but the first item on my schedule is Tai-Chi or Yoga, followed by a shower, and I really don't want to move to do either yet...so I'm sorta stuck in limbo

#spoonie #procastinate

𝔙𝔬𝔦𝔡 🏳️‍🌈🧿

6 days ago

Living in the south sucks.

#fibromyalgia #fibroproblems #disabled #chronicallyill #spoonie #depression

For the past week and a half, I've been really low energy due to how rapidly the weather has been changing here in Florida. One moment it will be a roaring 80-90 degrees and the next it will be a comfortable 52.

My body cannot handle such sudden changes, so I keep inside as best I can ( aside from doctors visits and walking Pabu ) and try to manage my health.

Aside from that, I've been watching horror movies and gaming. ( I found I can sit through anything now and not be really phased. Not sure if that is something to be alarmed about or the testosterone finally reached my brain and I'm just in that space of "oh this is a neat horror movie." or "This isn't real." )

I'm kind of just trying to enjoy life as best I can while I deal with my health issues.

6 days ago

Good meowning, nya'll! Wake up with a purr and a smile, knowing that today holds nyumerous opportunities for growth and nyappiness. Take a meowment to prioritize self-care and don't furget to take your meds, meow! Wishing you a day filled with nyappiness, love, and endless purrfection!
#morning #morningall #spoonie #positivity #canary #MOTD nya~

#spoonie #SpoonieLife #QueerSpoonie

I got it! I got one of the ADA units in the affordable housing co-op! AAAAAHHH!!! Now all I have to do is sign papers, drop some $$ to hold my place, and then ... pack and move. Ugh! I feel like that proverbial dog who actually catches the truck it was chasing: "Yay! Um, but what do I do now?" 🤣

#DrivebyPhotography #rain #spoonie #QueerSpoonie #SpoonieLife

Out and about on a dank rainy day for an important errand; attempting to calm my nerves with coffee (ha!), a bagel, and some nature at my favorite accessible riverside hang. I actually do like rainy misty days - just don't tolerate getting myself wet and cold as I once did. But at least it's not snowing down here like I understand it was doing up in the Cascades.

A tree-lined riverside bike path viewed through a rain-streaked vehicle window. Pretty much all the leaves are off the trees now, and the layer of orange and yellow leaves on the ground are losing a little of their brightness under the soaking from the steady rain. River is grayish brown, sky is totally overcast.

https://www.independent.co.uk/life-style/health-and-families/me-symptoms-wheelchair-dancing-b2450860.html

"Woman told exhaustion was just ‘A-level stress’ overcomes debilitating diagnosis: Elizabeth Hope, who was diagnosed with ME, has since overcome her adversity to become an award-winning wheelchair dancer"

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #chronicillness
#chroniclife #Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
@chronicillness
@spoonies
@disability
#Disabled #Disability #DisabilityArt

Stephanie Burgis

Today, the air in the house is so cold that I'm tucked up under a lap blanket, wearing my warm, fingerless gloves...but I'm so happy to be writing again after having to take yesterday off because the M.E./CFS was so bad. I'm actually ahead on my writing goals right now, so I didn't feel any deadline panic on the day I couldn't write - but I love my characters so much that I hated having to take time off from hanging out with them!

#ChronicIllness #Spoonie

Fjord In Progress

Booster flu jab, acquired. Three months since the first one. #immunocompromised #spoonie #life

Nyamaste, furriends! As the sun rises, embrace a new day full of endless pawssibilities. Prioritize self-care and remember to nourish your body and soul. Take your meds, meow, and let the world see your pawsome shine. Have a blissful and pawsitively zen day! Nya!
#morning #morningall #spoonie #positivity #canary #MOTD nya~

Regina Granat

#fibromyalgia #chronicillness #chronicpain #flare #spoonie

We’re over 2 weeks into this flare. God I look awful and old. I have next to no strength and my brain has been full of fog for weeks. This week I’ll mostly spend in bed to try and get my mind and body back. I could cry every day. My stomach keeps growling but I can’t ingest a lot of food. Doctor appointments are less than a month away. I just want to be better. Idk how much longer I can take this.

Waving Goodbye To Test Servers
https://twitch.tv/chronicallykiki
Final Fantasy XIV
#kikistreams #spoonie #vtuber #indievtuber
#finalfantasyxiv #ffxiv #aura #auri #finalfantasy14 #ff14 #cloudtest #cloudtest01

November 25th 2023
https://youtu.be/IOrFOIN0WZs
Final Fantasy XIV - Roulettes 'n' Chill
#kikivods #vtuber #spoonie #ffxiv #finalfantasyxiv #finalfantasy14 #ff14 #viqote #viera #spooniegamer #vtuberuprising #vods #envtuber #vtuberen #indievtuber #twitchaffiliate #smallstreamer

November 25th 2023
https://youtu.be/H0lKm_3AO0Q
Final Fantasy XIV - Cozy No Brain
#kikivods #vtuber #spoonie #ffxiv #finalfantasyxiv #finalfantasy14 #ff14 #viqote #viera #spooniegamer #vtuberuprising #vods #envtuber #vtuberen #indievtuber #twitchaffiliate #smallstreamer

November 18th 2023
https://youtu.be/bTEE4DexLUA
Final Fantasy XIV - Gotta Get Down On Friday [Part 2]
#kikivods #vtuber #spoonie #ffxiv #finalfantasyxiv #finalfantasy14 #ff14 #viqote #viera #spooniegamer #vtuberuprising #vods #envtuber #vtuberen #indievtuber #twitchaffiliate #smallstreamer

November 18th 2023
https://youtu.be/607qhlEDFZ8
Final Fantasy XIV - Gotta Get Down On Friday [Part 1]
#kikivods #vtuber #spoonie #ffxiv #finalfantasyxiv #finalfantasy14 #ff14 #viqote #viera #spooniegamer #vtuberuprising #vods #envtuber #vtuberen #indievtuber #twitchaffiliate #smallstreamer

Purrlightful meowning, furriends! Embrace the day with open paws and a heart full of gratitude. Take time to care for yourself, both physically and mentally. Remeowmber to take your meds, meow, as they are an important part of your well-being. Wishing you a purrific day filled with joy and contentment!
#morning #morningall #spoonie #positivity #canary #MOTD nya~

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #spoonie @spoonies #chronicillness #disabled

A Finnish newspaper writes about a man with #severeME, who is bedbound & had to move in with his mother. Yet he has been rejected for benefits & has been declared fit for work.

Google English translation:
https://www-iltalehti-fi.translate.goog/kotimaa/a/ed8757bf-b8c6-4a43-a17a-8055bfd33f9a?_x_tr_sl=fi&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

Irish ME/CFS Association

@chronicillness
@spoonies
@disability
@disabilityjustice @mecfs @longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#Disabled
#Disability

Disabled People Demand The Irish Government: Scrap the Green Paper on #DisabilityReform

More info: http://beacons.AI/ScrapTheGreenPaper

Disabled People Demand The Irish Government: Scrap the Green Paper on
Disability Reform

- The Irish Government’s Green Paper on Disability Reform, written
without disabled people & our DPOs but currently under public
consultation, is fundamentally ableist. It suggests that the
government can know everything it needs to about the lives and
experiences of disabled people in order to categorise us by our
ability to work, when a diagnosis worthy of any assistance is often
expensive and can often only be acquired through the private system or
by going abroad.

- The Green Paper may force as many as half the people currently on
disability off their payments and into work, and another third
pressured into finding and entering into part time work.

- The Green Paper will waste HSE money. The process to receive
disability payments right now is long & difficult. The government
assumes the limited things they can know about disabled people through
medical assessments are the only things they need to know. Forcing us
to prove every aspect of our lives as disabled people in order to be
left alone to care for our conditions puts us back through the process
of gathering even more diagnoses and documents and scans in order to
be categorised by our capacity to work. This is an ableist idea.

Rise and shine, furriends! Embrace the pawsibilities of the day ahead. Take a moment for self-care and don't furget to pawsitively start your day with your meds, meow! Wishing you a fabulous day filled with purrs and joy!
#morning #morningall #spoonie #positivity #canary #MOTD nya~

🍇 https://www.twitch.tv/chronicallykiki 🍇
Final Fantasy XIV
#kikistreams #spoonie #live2d #vtuberuprising #bunnyvtuber #twitchaffiliate #smallstreamers #envtuber #vtuberen #indievtuber #vtuber #finalfantasyxiv #ffxiv #finalfantasy14 #ff14 #viera #viqote

Leonie Jonk

#MastoArt #artistsonmastodon #watercolor #selfcare #spoonie

These gentle florals represent things that helped me a lot during burnout recovery and in everyday life with chronic pain & fatigue. A gentle reminder for selfcare in the form of a gentle botanical watercolor print 💖

A video filled with shots of closeups of watercolor floral prints being delicately embellished with gold ink. A pink magnolia, a purple lavender, a blue hydrangeas, a yellow rosebud.

Meowning greetings, everypawdy! May your day be filled with sunshine, purrs, and nyamazing adventures. Take care of yourself and remeowber to take your meds, mew! You're purrfect just the way you are. Have a pawsitively pawsome day!
#morning #morningall #spoonie #positivity #canary #MOTD nya~

Anna

#MEAwarenessHour
#PWME #MECFS #ChronicIllness
#NEISVoid #Spoonie #Disability #MedMastodon #ChronicPain #Endometriosis #LongCovid

NOBODY WILL HELP ME.

WHAT DO DOCTORS WANT TO HEAR?
WHAT ARE THE MAGIC WORDS YOU WANT TO HEAR?

I’M BEING LEFT TO ROT.

HELP ME. 😭

@mecfs
@chronicpain
@chronicillness
@endometriosis
@medmastodon
@longcovid

Anna

#MEAwarenessHour
#PWME #MECFS #ChronicIllness
#NEISVoid #Spoonie #Disability #MedMastodon #ChronicPain #Endometriosis #LongCovid

NOBODY WILL HELP ME.

WHAT DO DOCTORS WANT TO HEAR?
WHAT ARE THE MAGIC WORDS YOU WANT TO HEAR?

I’M BEING LEFT TO ROT.

HELP ME. 😭

@mecfs
@chronicpain
@chronicillness
@endometriosis
@medmastodon
@longcovid

Pawsome meownings, furriends! Remeowber to start your day with purrs and nyanful moments. Take care of yourself and don't furget to take your meds, meow! You deserve a meowvelous day!
#morning #morningall #spoonie #positivity #canary #MOTD nya~

#DrivebyPhotography #SpoonieLife #rivers #spoonie #QueerSpoonie

Out and about at my favorite accessible riverside hang, catching coffee and bagel and outdoor vibe on a surprisingly sunny mid-autumn day.

A tree-lined riverside bike path with most of the leaves off the trees and carpeting the ground in orange and yellow. The dark leafless trunks and branches, large and small, make a lacework against the sky, which is currently mostly cloudy but with a big patch of blue at upper right of shot.

Fjord In Progress

You are not alone. You are welcome. You belong. To all my #spoonie and #trans peeps out there who need to hear an encouraging message.

Two foxes made of orange and red flamed laying curved ends out and tail wrapped around, with heads and paws overlapping. Like embers glowing. Captioned with the phrases:
Hurt is not the same as hopeless. No amount of sadness or sickness can swallow the light inside of us.
From the Rise Above daily affirmation calendar, day November 21, 2023, as created by Kate Allan

@spoonies @chronicillness @mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #chronicillness
#chroniclife #ChronicPain #Spoonielife
#hiddenillness #invisibleillness #Spoonies
#Spoonie #ChronicallyIll

The South African news site IOL reports on "SICK Pride", a pyjama picnic for people with #chronicillnesses.

Co-founder Mlindeni Gabela said the goal was to make “invisible illnesses” visible in South Africa."
https://shorturl.at/fzGMR

DaxAeterna ✨ (witchandry)

#MutualAidRequest #DisabilityCrowdFund #mutualaid

SSA messed up with my check this month and Medicare still hasn't reimbursed me for an appointment in August, leaving me around $900 short of what I should have and rent is due tomorrow. I need about $550 before tomorrow right now.

If you have a dollar to spare, I would appreciate it! Thank you 💜 💜 💜

Venmo: DaxAeterna
Paypal: dax@dax.codes

#disability #spoonie #crowdfunding

DaxAeterna ✨ (witchandry)

#disabilitycrowdfund #disabled #spoonie

#MutualAidRequest So the SSA messed up somehow with taking out my Medicare premiums since my state decided to take me off of Medicaid because ... reasons????? And so my SSDI check was like $600 less than I was expecting it to be. Medicare also is 3 months late in reimbursing me for a doctors appt I had to pay out of pocket for in August that was nearly $300, and between those two things I do not have rent money and it's supposed to be withdrawn on Monday... I am about $600 short for it.

If anyone can spare a dollar or two, I would appreciate it.

paypal: dax@dax.codes

Jessie (they/she)

#Disabled and #spoonie folk of Mastodon:

I had #COVID in September, and it wiped me OUT. That being said, I recovered OK after a week & felt fine.

But I've noticed over the last 3 weeks that whenever I get fatigue... It feels so much more difficult to push through?

I'm sleeping way earlier, I'm napping way more too. I never used to sleep before 2am, now? Thats normal. I never used to nap. Now? Every other day I'll nap, and still need to go to bed early.

Could this be #LongCovid ?

https://www.hachettebookgroup.com/titles/letty-cottin-pogrebin/how-to-be-a-friend-to-a-friend-whos-sick/9781610392846/?lens=publicaffairs

"How to Be a Friend to a Friend Who's Sick"

I saw this book being recommended by somebody who cares for someone with ME.

I don't know anything more about it.

#Illness #chronicillness #hiddenillness #invisibleillness #Spoonies #Spoonie #ChronicallyIll @fibromyalgia @chronicillness
@spoonies
@disability
@longcovid
#LongCovid @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

How to Be a Friend to a Friend Who's Sick
By Letty Cottin Pogrebin

Description

Everyone knows someone who’s sick or suffering. Yet when a friend or relative is under duress many of us feel uncertain about how to cope.

Throughout her recent bout with breast cancer, Letty Cottin Pogrebin became fascinated by her friends’ and family’s diverse reactions to her and her illness: how awkwardly some of them behaved; how some misspoke or misinterpreted her needs; and how wonderful it was when people read her right. She began talking to her fellow patients and dozens of other veterans of serious illness, seeking to discover what sick people wished their friends knew about how best to comfort, help, and even simply talk to them.

Now Pogrebin has distilled their collective stories and opinions into this wide-ranging compendium of pragmatic guidance and usable wisdom. Her advice is always infused with sensitivity, warmth, and humor. It is embedded in candid stories from her own and others’ journeys, and their sometimes imperfect interactions with well-meaning friends. How to Be a Friend to a Friend Who’s Sick is an invaluable guidebook for anyone hoping to rise to the challenges of this most important and demanding passage of friendship.

Genre:

Nonfiction
Family & Relationships
Friendship

Jessie (they/she)

Catherine Rowan Jones/Ivy Fox

whew. Today is a baaaaad dysregulation day. Gonna try and take it easy, but theres so many deadlines on the horizon 😔 #ActuallyAutistic #Spoonie #Disability

#AuDHD #ADHD #ACTUALLYAUTISTIC #spoonsTheory #spoonie

#Introduction
Hello again, Mastodon :) I've just changed #instance following a 3-day mystery outage at the old place and a warm welcome here. Thank you for great help, @jippi
Most people know me as Ivy Fox, hence the new scientific name mash-up.
I enjoy learning, listening (to radio, #podcast episodes, people), and making with #wool .
IMO the least interesting thing about me is chronic illness #spoonie & limited mobility so I tend not to mention that.

Dwight (DB) 🤔

4 weeks ago

Having an understanding of how many spoons you have, how many should normally be required for the day, and what to expect and what may be required should unexpected circumstances result in a shortage of spoons... is not being negative.

Wanting and planning for the best possible outcome with the tools you have is positive and affirming action.

#spoonie

Lyssa Chiavari

4 weeks ago

I made this to remind myself, now let's see if I actually listen to myself 😅 #Spoonie #ChronicIllness #Embroidery #FiberArts #Loomscrolling

An embroidery sampler featuring purple flowers stitched around the phrase, "Slow progress is still progress"

thegrumpyenby

1 month ago

Question: Should I be putting a spoon under my pillow at night? Is that how you magically wake up with spoons? 🤔

https://www.statnews.com/2023/10/23/chronic-illness-meghan-orourke-reforming-medical-system/

1 month ago

STAT Meghan O´Rourke on a medical system not built for #chronicillness - and the 'invisible kingdom' that could spur change

Interview with Megan O´Rourke, journalist and author of the book "The invisible kingdom". She talks about society's resistance to #chronicillnesses and the need for recognition and investment in these conditions.

@chronicillness
@spoonies
#neisvoid
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#Spoonies
#Spoonie
#ChronicallyIll

ahimsa

1 month ago

For folks who use electrolyte drinks:

Normalyte, a brand of powdered Oral Rehydration Salts (ORS), will include a free lapel pin with any $50 order. It shows up in your cart after you add enough merchandise.

See attached image to see what the pin looks like.

https://normalyte.com/products/lapel-pin-salty-and-low-on-spoons?_pos=1&_sid=315baa8f1&_ss=r

Note: I have no connection with this company. I'm a customer so I got an email promoting this giveaway.

#POTS #Dysautonomia #MEcfs #Spoonie #Giveaway

Ariel Kroon

#spoonie #SpoonieLife #CanCon2023

I also am a little "hungover" from yesterday evening. Not from alcohol, just that fun chronic fatigue. Know that I find the long paused between words when I speak as annoying as you do. Apparently my brain is having a hard time parsing the excellent input from every direction here and it's slowing down my cognition significantly.

#DrivebyPhotography #SpoonieLife #RoseGarden #QueerSpoonie #spoonie

Out and about to my current favorite accessible park hang, to grab some fresh air and sunshine before the next bunch of rain blows in. Said sunshine has that almost preternatural brightness I've noticed before in advance of a front moving in. I love watching weather (as long as I'm not stuck in it! 🤣 )

An arched metal trellis covered in climbing rose foliage and pink blooms, in bright sunshine against a sky full of active clouds.

Hannah Wolfram

#disabled #disability #DisabledCommunity #disabilitycommunity #spoonie #spooniesupport #spoonielife #chronicillness #chronicillnesswarrior #mentalhealth #mentalhealthmatters

Hello #spooniecommunity ☺️
My name is Hannah; it's good to be here with y'all!

I can't wait to meet some amazing people here. Introduce yourself?

Cetraria

I love the weather this time of year. I can feel cooler weather coming in on the breeze, and it feels lovely. I don't really enjoy the up and down in my functionally, level, but the cooler weather should sort that out soon enough. #PNW #spoonie #NEISVoid

NothingLeftOfMe

2/2 It's clearly not a question of if the accommodation could have been made. We proved it was possible. Only now, the majority felt it is no longer worthwhile or needed for themselves! Let's be honest that they could choose to be inclusive, but they have chosen not to be. Here is the link:
https://www.washingtonpost.com/education/2023/10/03/loudoun-corbo-lawsuit-dismissed/
#discrimination #disability
#virginia #DMV #ADA #spoonie #fatigue #lymeDisease #CFS

@chronicillness
@spoonies
@mecfs
#MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #neisvoid
#chronicillness
#chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

A great initiative being organised by Julie Rehmeyer.
https://docs.google.com/forms/d/e/1FAIpQLSeWgCCEpr5p9b7I0RuvB9LmvQcC6rm1dx_CgCYBzU9VtTBj6A/viewform

I'm on there already. I will probably give my codes to this initiative.

Incidentally, you can find my social media channels including on #bluesky here
https://me-pedia.org/wiki/Tom_Kindlon#Online_presence

BlueSky Invites for the Chronic Illness Community
Please fill out this form if you're the chronic illness community and you'd like to either (1) donate invite codes or (2) request an invite.
Sign in to Google to save your progress. Learn more
Do you want to donate an invite code or request a code?
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Badass Britt :mastodon_lgbt:

TW: Mild discussion of chronic health issues and grief.

I really miss being able to play MMO's, especially #WoW. I cannot cognitively keep up with worlds like that anymore and it makes me sads.

Everything feels like a job, a chore, a huge undertaking. When I can only spend about an hour a day playing a game (thanks, health)... that's just not it for me anymore. No more long play sessions.

Does anyone else out there feel this sort of grief related to #Illness?

#ChronicIllness #Spoonie

#chronicillness #Spoonie #Hiddendisabilities #Invisibledisability
@chronicillness @spoonies @disability @mecfs @longcovid

10/

"Those with #disabilities face hurdles every day the able-bodied cannot fathom. If you are concerned that the #disabled are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but please don’t act on it."

#chronicillness #Spoonie #Hiddendisabilities #Invisibledisability

9/

"4. If someone would like to help those with #disabilities, there are better ways to do this than by leaving notes on someone’s car or making disdainful comments... You can spread the word that many disabilities are invisible and learn more about why disability and illness are often considered “invisible.”..."

@chronicillness @spoonies @disability @mecfs @longcovid

#Butyoudontlooksick #Invisibledisability #Spoonie
@chronicillness @spoonies @disability @mecfs @longcovid

6/
"When someone leaves a note on a car or makes a comment, they are making rash judgments about someone they’ve never even met and enacting a gross injustice on someone who faces daily obstacles already.

This needs to stop."

https://themighty.com/topic/disability/what-to-know-about-getting-a-disability-parking-placard/

🧵
"To Anyone Afraid to Get a Disabled Placard Because You're Worried About Judgment"

@chronicillness
@spoonies
@disability
@mecfs
@longcovid

#chronicillness
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
#Butyoudontlooksick
#Invisibledisability
#Disabled
#Disability
#Hiddendisability
#Hiddendisabilities

1/

Disability
To Anyone Afraid to Get a Disabled Placard Because You're Worried About Judgment

Stefani Shea •
Follow
Last updated: May 27, 2022

@chronicillness @spoonies @mecfs @longcovid #ChronicIllnesses
#Spoonies
#Spoonie

6/

"But when those plans involve other people, the stress and guilt felt by having to tell them you don’t feel well enough to participate can be overwhelming."

@chronicillness @spoonies @mecfs @longcovid #Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

5/

"Spoon delegation isn’t always about the things you have to get done on your task list. Sometimes it’s about making the decision to put those spoons toward an activity you enjoy for your mental health — even if it means you’re going to be a little smelly — that’s what deodorant and body sprays are for!"

#chroniclife #Spoonielife #Spoonie @chronicillness @spoonies @mecfs @longcovid

3/

"Now that I’m living with #chronicillness, I have to put serious consideration into much of what I choose to do throughout the day because it will have an immediate effect on Current Leslie, as well as risk having an impact on Future Leslie."

#chronicillness #chroniclife #Spoonielife #Spoonies #Spoonie @chronicillness @spoonies @mecfs #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid #LongCovid #PwLC #postcovid #postcovid19 #LC

2/

4. Deciding how to respond to “I hope you feel better soon!”

5. Deciding if you’re actually able to do ‘The Thing.’

6. Deciding how much social interaction you can handle.

7. Deciding when to ask for help.

#chronicillness #chroniclife #Spoonielife #Spoonies #Spoonie @chronicillness @spoonies @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC

🧵

"7 Challenging Daily Decisions When You
Live With Chronic Illness
https://themighty.com/topic/chronic-illness/challenging-daily-decisions-with-chronic-illness/

Here are the 7 headings. The article itself expands on these

1. Deciding if you’re going to take a shower.
2. Deciding where to spend and save your spoons.
3. Deciding how to answer “How are you?”

1/

Chronic Illness
7 Challenging Daily Decisions When You Live With Chronic Illness

Leslie Kiszka •
Follow
Last updated: August 24, 2023

Fjord In Progress

@GottaLaff @sollat CVS has already updated their site to schedule #Covid19 2023/24 booster vaccination appointments (doses to be administered beginning on 9/18). Appointment has been set for spouse and self! Checking with Rheumatologist to see if I should modify the timing of my upcoming immunosuppressant injection. I want this booster to be as effective as it can be.

#disabled #spoonie

Evie (SleepyCatten)

What game from my Steam games backlog should I start playing this coming Tuesday to mark my return to #streaming?

#Twitch #queer #trans #transgender #TransWoman #TransFem #LGBTQ+ #LGBTQIA+ #neurodivergent #ActuallyAutistic #ADHD #AuDHD #spoonie

#chroniclife #hiddenillness #invisibleillness @chronicillness @spoonies #Spoonie #ChronicallyIll #MEcfs #postcovid

5/

“I thought you were getting better?” can hit like the pointy end of a very sharp sword sometimes. It feels accusatory. Like we’re being accused of not trying hard enough, that not getting better is somehow a personal failing, or even that we’re maybe just pretending that we’re as bad as we are for that imaginary #disabled bonus that many non-disabled people believe to exist."