tomkindlon, to chronicillness
@tomkindlon@disabled.social avatar

🧵
"17 Things I Don’t Admit on Bad Days With Chronic Fatigue*"

https://themighty.com/topic/chronic-illness/hidden-truths-of-what-chronic-fatigue-feels-like/

*Note that she clarifies "people with many illnesses experience chronic fatigue, but it should not be confused with / , a distinct diagnosis that also includes as a symptom."

@chronicillness
@spoonies




1/

nuz, to mecfs

real footage of me rolling out of bed at almost 7pm: :cat_roll:​

some people might think sleeping all day is lazy, but i call it :birb_love:​

(i overexerted myself yesterday and needed the extra rest to make up for it :cozy:​)

nigelharpur, to opensource
@nigelharpur@musicians.today avatar

@libreoffice @GIMP
@inkscape

Just a shout out of gratitude to the wonderful open source coders that make it possible for me to publish the (also wonderful) Verity Red books of Maria Mann and produce the artwork for my own music releases too. Bravo! Bravissimo!!

https://mariadelamann.co.uk

InayaShujaat, to me
@InayaShujaat@paktodon.asia avatar

My (physician) husband read an article last night about a medication that’s been around for decades and used to treat , but is now being looked into to treat / . It gives a person energy. Can you believe it? Not feeling so damn fatigued all the time?

He’s going to read up about it more. InshAllah, I’ll let folks know what he finds out.
@mecfs @MECFSMedEd

dyani, to animals
@dyani@social.coop avatar

👋🏻 Hi, my name is D'yani! (cisfem, she/her) time!

I'm a thoughtful , very into and real .

I'm afraid I suck at making friends? Despite unshakable deep loneliness. So pls if you think we could be friends, throw me a lifeline 😊

herbstlavendel, to random German

Warum Zeitmanagement bei mir an Arbeitstagen einfach nicht funktioniert will ich bitte mal wissen. Und wie soll man überhaupt all so Dinge wie vorher duschen, kochen, Haushalt, und im besten Fall auch noch was für sich tun, schaffen, wenn die spoons für den Tag eigentlich nicht mal komplett für die Arbeit ausreichen.

FakePlasticDunk, to random

For anyone out there also navigating the treacherous Long Covid/Chronic Fatigue/ME landscape

(e.g. @Coachmark ?)

"For some long COVID patients, exercise is bad medicine" (National Geographic, April 27th, 2023)

https://archive.is/2023.04.27-185140/https://www.nationalgeographic.com/premium/article/long-covid-patients-exercise-bad-medicine

podkaynelives, to random

I seem to be out of breath from (checks notes)... getting back into bed.



scrappedbadnik, to transmasc

I can't bind because of chronic pain, and trans tape isn't holding my tits because it's heavy, I can't do surgery either because it takes more than morphine for me to not suffer, what should I do? I'm lost.

jo, to disability

I'm really thankful to the person who bought me a box of 30 packets of Maggi noodles. Having them available to eat when hit me means that I don't have to find the energy to get to the shops sooner - cos I've been caught low on groceries atm. Hopefully I'll have my mojo back tomorrow or Thursday and can stock up a bit more then. Thanks for your kind support.

Norobiik, to random
@Norobiik@noc.social avatar

We should have known. It took a deadly pandemic to wake us all up.

This view of and their potential long-term impacts may lead to research that will also help people with other little understood conditions, such as syndrome and , which experts believe might be triggered by viral infections, Al-Aly said.

: Like , can also lead to lingering symptoms
https://www.nbcnews.com/health/health-news/long-flu-long-covid-influenza-can-also-lead-lingering-symptoms-rcna129787

InayaShujaat, to mecfs
@InayaShujaat@paktodon.asia avatar

Living with means doing all you can to "save" what little energy you have. You have to very carefully choose what you do, knowing that any little thing can wipe you out completely.

I spend my days just sitting, and waiting until I absolutely HAVE to do something, because I cannot "waste" my energy doing things I WANT to do.

It. Fucking. Sucks.

dkozlov, to random
@dkozlov@mstdn.games avatar

Just slept for eleven hours in a row, and now I'm finally feeling reasonably rested after the past week's assorted mishegas. Sometimes the urge to sleep a whole lot is pure and simple exhaustion, totally aside from any depression going on (and depression is exhausting too, TBH), so I've slowly learned to give myself permission to sleep long and not further upset myself by worrying about it.

podkaynelives, to mecfs

Said this to my equally exhausted spouse just now: It's better to be tired with each other than tired of each other.






ChronicIllnessHumor, to random
@ChronicIllnessHumor@mastodon.social avatar
RamenCatholic, to random

Y'all ever recover from a nasty or whatever, and feel so good that you fuck yourself by overdoing shit?

Friday night, Hannity the finally settled into his current home; I did THREE whole chores, then on Sat I picked up a shift at work.

Now I'm paying for my ambition and spending Sunday in bed. I'm bummed - we were gonna have SNACKS at the mid-morning before worship & share our stories.


blog_bleistift, to mecfs German

I want to send 50 postcards to people who have ME/CFS or Long Covid. To let them know they are not alone.

Please help:
Order a postcard for a friend of yours who is affected: https://ko-fi.com/annalenakoenig/commissions

You can choose the price and I will forward the donations to https://sgme.ch/

ninahatfield, to mecfs

Currently accepting applications for Co-Resting cohorts beginning during the first two weeks of April

In response to feeling isolated by chronic illness and appreciative of remote access to community, I host online Co-Resting Groups. They provide a way to gently socialize and rest in community.

Interested or know someone who might be? Please have a look and share!

https://www.co-resting.org

AceyAngel, to trans
@AceyAngel@disabled.social avatar

Emergency aid for disabled individual;
$180/600 groceries/eye appointment/ Visa app fees

$50 for eye appt at minimum
$200 for weekly groceries
$350 cost for new Visa application

Anything helps. Please boost / share 🔁

https://www.paypal.me/addriannawing1
https://cash.app/$AceyAngel



ninahatfield, to mecfs

Currently accepting applications for an every-other-Monday cohort for people with energy-limiting conditions, starting January 15th, 2024

In response to feeling isolated by chronic illness and appreciative of remote access to community, I host online Co-Resting Groups. They provide a way to gently socialize and rest in community.

Interested or know someone who might be? Please have a look and share!

https://www.co-resting.org

amberlove, to cfs

"scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.

Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy."

https://www.npr.org/sections/health-shots/2024/01/09/1223077307/long-covid-exercise-post-exertional-malaise-mitochondria

podkaynelives, to animals

Today is my Two Year Anniversary 🥳

I'm not going to lie: it's been challenging dealing with major fatigue, brain fog, pain, breathlessness, random flare-ups, and an ever growing assortment of medical and mobility aids.

I'm not saying this as a pity party, but rather to remind you that every time you get , it's another chance to join my Long COVID Cool Kidz Club, and you really don't want to be a member. The dues are too high, theres no easy way to cancel your subscription, and the service is terrible!

Thank you Mastodon and the Fediverse for the laughs, conversations, connectedness and the cat photos..... Sooo many cat photos. You really put the social in social media, you adorable weirdos. ❤️






dkozlov, to random
@dkozlov@mstdn.games avatar

The CrankyBod has decreed that today be a low-energy flat-brainwave day - minimal cooking, maximal goofing off in my favorite MMO. And so it shall be.

CazimodoCreative, to mecfs

Analysis of the recent questionnaire answers from the UK DecodeME study can be found here if anyone would like to read them.

@mecfs

https://openresearch.nihr.ac.uk/articles/3-20/v4

essie_is_okay, to disability

Having chronic fatigue means you feel like someone came and drained your life force in the night. I feel as if a vampire sucked me dry but leaves just enough for me to survive.

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