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thomascytosis.bsky.social
Oily Fish (he/they)
@thomascytosis.bsky.social
19 followers 28 following 37 posts
Navigating the misery of chronic illness.

I got my jewels and most of my marbles but I ain't got any spoons!

In CO, from CA, wish I was someplace tropical.

Only kindness matters.
#longcovid #mecfs #autism
Posts Replies Media Videos
thomascytosis.bsky.social
"I've been thinking about showering for 17 days."

#PEM #MECFS #CHRONICILLNESS #LONGCOVID

youtu.be/Q44Wov6-VXA?...
Are you thinking about showering today?
YouTube video by Long Covid Musings & Moments
youtu.be
August 25, 2025 at 6:02 AM
thomascytosis.bsky.social
David made his channel official!

youtu.be/XqP4vucCdHs?...

#longcovidmusings #longcovid #chronicillness #invisible #PEM #mecfs
Long Covid Musings & Moments Trailer
YouTube video by Long Covid Musings & Moments
youtu.be
August 13, 2025 at 6:55 PM
thomascytosis.bsky.social
Thank you, Hollis!
solveme.bsky.social Solve M.E. @solveme.bsky.social · Aug 8
In this video, Solve M.E. Lived Experience Taskforce (LET) member Hollis Mickey talks about why it’s important that the language of blame be avoided when discussing #SevereME.

#UnitedForME #SevereMEDay
August 9, 2025 at 3:09 AM
thomascytosis.bsky.social
Hope is hard.
Another video from #longcovidmusings

#MECFS #longcovid #chronicillness #PEM

youtu.be/emMFdkHXpeA?...
My Biggest Chronic Illness Challenge: Holding on to Hope
YouTube video by Long Covid Musings & Moments
youtu.be
August 8, 2025 at 8:38 PM
thomascytosis.bsky.social
I don't know if this has been shared, but I just discovered this [video](youtu.be/5LUox41bP94?...)

#mecfs #MECFS #chronicillness #longcovid
Hollis Mickey on Pacing with Severe M.E.
YouTube video by SolveME
youtu.be
August 6, 2025 at 10:30 PM
thomascytosis.bsky.social
"I have stockholm syndrome with myself" 😆

Gold that came out of therapy today. Tickles me everytime I say it.

#therapy #mecfs #chronicillness #autism #longcovid
August 5, 2025 at 7:51 PM
thomascytosis.bsky.social
What if we paid local taxes for the city to throw a party/event for every citizen who died? The burden no longer on the family but on the community.

What an interesting culture and community that would be!

#alternateuniverse #showerthoughts #PEM -thoughts #chronicillness
August 2, 2025 at 7:50 PM
thomascytosis.bsky.social
Seems like lately all I post are repost videos. But this is a good one!
#mecfs #ME/CFS #chronicillness #longcovid #Long-Covid

youtu.be/_P35ezoIQfM?...
Finding Purpose in Life with Long Covid: Price vs. Payoff
YouTube video by Long Covid Musings & Moments
youtu.be
July 15, 2025 at 10:03 PM
thomascytosis.bsky.social
When the constant nightmare finds you in your sleep.

youtu.be/MUuxduD5rCo?...

#mecfs #ME/CFS #longcovid #chronicillness #ChronicIllness #Long-Covid
The Long Covid "Nightmare" and Nightmares
YouTube video by Long Covid Musings & Moments
youtu.be
July 10, 2025 at 9:10 PM
Reposted by Oily Fish (he/they)
admiringbog.bsky.social
Pacing has forced me to become a connoisseur of fatigue when I just want to ignore it. #ME/CFS #PEM
July 3, 2025 at 11:31 PM
Reposted by Oily Fish (he/they)
smettb0.bsky.social
Truly astounding that the "move too much and you might die" illness also comes with "skeleton wants to go zoomies" symptoms

#mecfs #neisvoid
June 30, 2025 at 4:35 PM
thomascytosis.bsky.social
I'm tired of pacing, but it's all I got. youtube.com/watch?v=-qlm...
#mecfs #chronicilllness #ME/CFS #PEM #longcovid #pacing #spoons
Recipe for Success Becomes Recipe for PEM
YouTube video by Long Covid Musings & Moments
youtube.com
June 30, 2025 at 9:03 PM
thomascytosis.bsky.social
The torture cycle of not being able to do impacting emotions impacting mental impacting doing repeat.
I spend energy not getting emotional to save on spoons.
#mecfs #ME/CFS #longcovid #chronicillness
youtu.be/A00bXgA85DY?...
DON'T cross that (or that or that... ) off the list
YouTube video by Long Covid Musings & Moments
youtu.be
June 16, 2025 at 7:18 PM
thomascytosis.bsky.social
I'm glad this guy is making videos.
Are there anyone else making videos and sharing our struggle?
#mecfs #ME/CFS #longcovid

youtu.be/gJXyG3lKJZU?...
A Lifelong Bad Habit Succumbs to Long Covid
YouTube video by Long Covid Musings & Moments
youtu.be
June 9, 2025 at 11:34 PM
thomascytosis.bsky.social
Bare with me, this is a vibe more than logic.

If doing the work to accomplish a goal allows you to have hope that you will achieve it.

Then, the hope that life will be better for someone suffering from chronic illness, perhaps the suffering *is* doing the work.

#therapy #mecfs #ME/CFS
June 3, 2025 at 7:50 PM
thomascytosis.bsky.social
Looks in the fridge for something to eat.
"Nothing looks good."
Thinks for a moment.
"Nothing never looks good."
Thinks again.
"Nothing ever looks good?"

Wtf english!

#English #language #showerthoughts #indecision #food #autistic
May 19, 2025 at 5:54 AM
thomascytosis.bsky.social
Why can't I use the energy to not piss myself, to get up and go pee!?

#mecfs #ME/CFS #PEM
May 12, 2025 at 10:28 PM
thomascytosis.bsky.social
"Am I in PEM? How about now?"

I have these times when I'm negative baseline, feels like borderline PEM, but not.

It is not always clear to me if I've crossed into PEM.
Contrast with when it's acute, it's obvious because I can't talk anymore.

Thoughts on the fringes of PEM?

#mecfs #ME/CFS #PEM
April 30, 2025 at 7:25 PM
thomascytosis.bsky.social
I frequently describe how my brain feels as:
"Its like my brain is badly sunburned; it feels raw, it hurts and stings when I use it."

Because our symptoms are so hard to put words to.

Anyone have an interesting way they describe a symptom?

#mecfs #ME/CFS #longcovid
April 8, 2025 at 11:56 PM
thomascytosis.bsky.social
I love this artist so much!
#music #igorrr

igorrr.bandcamp.com/track/adhd
ADHD, by Igorrr
track by Igorrr
igorrr.bandcamp.com
April 3, 2025 at 5:19 AM
thomascytosis.bsky.social
"Don't you have negative thoughts about yourself?"

I couldn't say or think of any at the time, so I thought I didn't have any. But surely everyone does.

Today, I got angry with myself.
If I think, say, or do something that goes against my core philosophy and feelings.

#selfcare
April 2, 2025 at 8:16 PM
thomascytosis.bsky.social
"A window pane of shattered glass."
One of the first ways I described how my brain feels.

The effort to think;
"brushing fingertips across the surface and feeling the cracks, the sharp edges, and the web of branching glass fragments."

#mecfs #ME/CFS
April 1, 2025 at 7:12 PM
Reposted by Oily Fish (he/they)
exceedhergrasp1.bsky.social
Here are a few things I've made!

1. Concise Clinical Review in Mayo Clinic Proceedings (me + Mayo Clinic Rochester physicians, @grachstephanie.bsky.social et. al)

A quick-yet-thorough introduction to #MECFS; you can take it to your doctor. 🧵

www.mayoclinicproceedings.org/article/s002...
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant...
www.mayoclinicproceedings.org
March 30, 2025 at 9:01 PM
thomascytosis.bsky.social
Coming up for air after about a two day #PEM state. I gotta say, it sucks!
Also crazy how time starts to blur, and memories of the past flash in your mind. Things and feelings you haven't thought about.
I swear I was a teenager again for some of it.
Weird.
#mecfs #ME/CFS
March 31, 2025 at 6:28 PM
thomascytosis.bsky.social
You know that feeling you get at the back of your throat when you hold your breath too long and your body wants to breath? Is that feeling called suffocation?

I often feel that feeling in #PEMs and sometimes on an average day #ME/CFS, and I'm breathing perfectly normal.

Is it just me?
#mecfs
March 29, 2025 at 10:50 PM