4/

“It’s almost impossible, but remember to take care of yourself, too. You won’t be any use to the person(s) you’re taking care of if you crash or worsen.”

#longtermillness #caring #mecfs #cfs #pwme
@mecfs

8/
“Sloan’s study similarly found higher rates of healthcare avoidance and of underreporting symptoms “from distrust and fear that symptoms would be disbelieved and misattributed again,” the researchers wrote.”

#neisvoid #longtermdisease #longtermillness

@lupus @eds @fibromyalgia @ibs @mecfs @longcovid @chronicillness @spoonies

Today is #LongCovidAwarenessDay.

In the lack of having a good macroblog or similar, I tried to publish it on my Friendica.

I reposted it here, so you might get it double? Not sure how a Friendica post-share actually shows in this system (if it gets cropped or not?) so thats why I did the double share.

#postcovid
#longcovid
#longtermillness
#disabiliity
#longcovidawareness

https://friendica.world/display/84b6ef2b-2067-d5db-1b65-b90155356905

Johan Moir (Friendica)

Today is #LongCovidAwarenessDay. Tomorrow marks 5 years since I got sick. As a patient, you often need to stay focused in the present, adapting your days an...

10/
“The problematic conversations that transpire between clinicians and patients often involve specific words and phrases—termed the “never-words [6]”—that can leave patients feeling upset, angry, fearful, confused, and demoralized”

#LongTermIllness #chronicallyill
@mecfs @longcovid @chronicillness #mecfs #longcovid

2/

2. When You Need to Cancel or Change Plans

3. When You’re Unable to Keep Up With Your Kids

4. When You Depend on Others and Feel Like a ‘Burden’

5. When You’re Unable to Work and Contribute Financially to Your Family

#spoonie #longtermillness #chronicdiseases
@mecfs @longcovid @chronicillness @spoonies @disability @fibromyalgia @pots

5/

“Focus on what is within your control

Many aspects of an incurable chronic illness are outside your control, and that can feel overwhelming. Find the things that are within your control and try to focus on those. (contd)”

#chronicallyill #longtermillness #chronicillness #chroniclife @mecfs
#MEcfs #CFS #PwME #LongCovid @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FM #POTS

More than 500,000 under-35s in UK out of work due to long-term illness

Experts link 44% increase in four years to a growing mental health crisis and underinvestment in health services

The Guardian
Hi Ren
I may have posted this b4 but just shakes me when I hear it. Amazing piece of great art.
https://open.spotify.com/track/0FLwYQoXvX8q5iRZnFX59u?si=ArKRNAUtSZyi-ypoxvxk2A
CW for the song's content: #bipolar #longtermillness #LimeDisease #neurodivergent #depression #InnerVoices
But so much existential power. (Sorry, another edit, absolutely fucking brilliant lyrics.)
> Ren · Song · 2022
Hi Ren

Ren · Hi Ren · Song · 2022

Spotify