halcionandon, to chronicillness
@halcionandon@disabled.social avatar

Unsure how common this is in other affecting cognition, but when you have the writing errors you’re almost guaranteed to make are:

  1. Double the same word
    or
  2. Exclude it altogether
    Or do both!

So frustrating & the sicker you are the worse it gets. You simply can’t see mistakes! Other problems too ofc but I’ve found this is the most common error made by

I did both when composing this!

I miss my old brain!
😩

@mecfs @longcovid @chronicillness

britt, to cfs
@britt@mstdn.games avatar

The elusive good night sleep. 😴

I get one of these once every 3 months, maybe?

I shall compound my interest and make today a rest day. Onward to binging Netflix.

Fury, to scifi
@Fury@mastodon.au avatar

Got a new idea for a novel. Pre-industrial society on nameless planet. Disabled people sometimes disappear and come back “fixed”. It’s the aliens. The kicker is they’re purifying the gene pool and replacing the people in synth bodies. I know this might trigger some disabled people, but what I wouldn’t give to be in a non disabled body with the same mind…

Fury,
@Fury@mastodon.au avatar

Character arc… someone who is able-bodied wants the synth body, gets into an “accident” but doesn’t get chosen and has to live with their injuries. Acceptance is one of my strongest character arcs. Sometimes there is no fixing. I can’t wait to put my PhD to rest so I can write fiction again!

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

"Long COVID advocates hammer Biden over ‘minimal funding’ in budget request"

https://thehill.com/policy/healthcare/4682533-long-covid-advocates-hammer-biden-over-minimal-funding-in-budget-request/

"According to a Centers for Disease Control (CDC) report from September of last year, around 18 million adults reported dealing with long COVID as of 2022."

@longcovid

WillardHerman, to random
@WillardHerman@mastodon.social avatar

My doctor finally figured out what has been wrong with me for seven years.

I felt like saying “I told you so.” But I was just too tired. And why bother saying that?

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
programmablecat, to random
@programmablecat@post.lurk.org avatar

i think the hardest thing about becoming inflicted with a debilitating chronic illness in your 30’s is having to reset your understanding of your own body, your capacity, your energy, and learning to be even more understanding, forgiving, and kind to yourself

and giving yourself time to grieve the person you used to be

i’m still there in that space.

i’m also still convincing myself that my dreams and goals don’t have to change. its the steps i’m taking to achieve them is what has to change.

ahimsa_pdx, to books
@ahimsa_pdx@disabled.social avatar

"Ten new books about Long Covid, chronic illness, and disability"

https://thesicktimes.org/2024/05/21/ten-new-books-about-long-covid-chronic-illness-and-disability/

"Here are ten recently published books on Long Covid, Myalgic Encephalomyelitis (ME), chronic illness, and disability."

britt, to medical
@britt@mstdn.games avatar

My new med for RA finally arrived by delivery courier. This is after 6 weeks of talking to the drug manufacturer, 2 speciality pharmacists, doing paperwork, intake phone calls, and finally scheduling a delivery.

The med is covered under a provincial ‘compassionate care’ program because it costs $6,200 USD / month out of pocket.

I share because it’s important to know what we go through. We don’t choose to be sick. We don’t want this. We just want to be well. 💜

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting May 13:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-533010/

This two part news summary includes articles, videos, research, advocacy, coming events, and more

@mecfs @longcovid

Dynamicallydisabled, to random
@Dynamicallydisabled@spore.social avatar
Dynamicallydisabled,
@Dynamicallydisabled@spore.social avatar

Not Quite a Ghost 📚 In this middle grade book, the main character simultaneously deals with a spooky presence in her new house, and a confusing new . The author does a great job portraying some struggles common to and : the discombobulating nature of symptoms that fluctuate, shifts in friendships when pals don’t believe/judge you, not being believed by doctors, and some very accurate descriptions of . Plus, the suspense makes it a great audiobook.

StillIRise1963, to random
@StillIRise1963@mastodon.world avatar

“Woe is me” is NEVER an acceptable frame of mind.

anne_twain,
@anne_twain@theblower.au avatar

@justafrog @StillIRise1963 In my lifetime of seven decades I've learned that it's not possible to gauge someone else's level of pain, and for that reason no-one is in a position to tell another person how to respond to or express pain.

Both emotional and physical pain can be crippling.

I suggest you stop judging others and pay attention to how you live your own life.

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting May 6:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-531761

The news summary includes articles, videos, research, advocacy, coming events, and more.

Note: A transcript from the CDC's May 6th ME/CFS webinar is now available:

https://www.cdc.gov/me-cfs/pdfs/23-sec-cdc-program-update-5-3-24.pdf

@mecfs @longcovid

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
vlrny, to mentalhealth
@vlrny@disabled.social avatar

Following up on a side chat, what are folks doing for lazy food hacks when yer too tired to cook but don't want to eat junk?

Share yer ideas so others can steal 'em!

#spoonies #chronicIllness #longCovid #chronicPain #mentalHealth #selfcare

Kencf618033,
@Kencf618033@disabled.social avatar

@vlrny
Tuna, flax seed oil, and a few drops of ghost pepper sauce.

#spoonies #chronicIllness #longCovid #chronicPain #mentalHealth #selfcare

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

As we approach May 12, ME/CFS International Awareness Day, it's important to remember those with severe ME.

Many of them are so sick that they are on social media either very rarely or not at all 😢

This video from Anil van der Zee, The Prison of ME, explains the agony of severe ME:

https://www.youtube.com/watch?v=yLRateIQdzc

About 12 minutes. Subtitles in multiple languages.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Screenshot of the video summary. See the image if you can't read the text.

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting April 29:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-530486/

The news summary includes articles, videos, research, advocacy, coming events, and more.

⭐️ One highlight: The Time100Health list includes several people working on ME/CFS and Long Covid (Jaime Seltzer, Avindra Nath, Ziyad Al-Aly, Akiko Iwasaki, and others) ⭐️

https://www.s4me.info/threads/time100-health-jaime-seltzer-postviral-patient-advocate.38357/

@mecfs @longcovid

britt, to random
@britt@mstdn.games avatar

More pokey pokes today … hopefully the last lab tests and vaccines before I get to start on my immunotherapy.

2 week countdown let’s go!

britt,
@britt@mstdn.games avatar

Fun fact: RA doesn’t just affect the joints… and it’s not just an ‘old person’ disease…

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
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