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#spoonies

3 posts3 participants0 posts today
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datum (n=1)

Hey! Are you in the USA, near-ish to Virginia? Do you (or someone you know) have any of:

  • hypersomnia
  • complex sleep disturbances
  • postural orthostatic tachycardia syndrome, or POTS?

Trials are open for treatments for these symptoms!

Those interested in participating in the trials can contact the clinic for screening to see if they are eligible. The team can be reached via email at covidtrialsuva@uvahealth.org, or by phone at 434-243-4008 or toll-free at 855-882-5334.

and they seem like good folks:

“We see patients coming in who are frustrated because they look fairly normal, but they cannot fully function and are not being believed,” she said. “So, for those people, I want to say this is truly a disease and you are not imagining anything.”

#COVID19#COVID#LongCOVID
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Sp4rkR4t :yes_scotland:

My daughter has a #wordpress site to act as her art #portfolio and prints shop through #printify. This is a bit heavy & slow way to do things but I wasn't well enough to build her anything custom.
I'm now a bit better at my #pacing so was thinking about building her a new static site that plugs into her printify shop.
Anyone have ideas about what toolkits have wordpress import, handle image compression well and integrate with printify? #webdev #spoonies #mecfs

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Valerie Roney

Ermahgawd!!!
I found the OG article that started "spoon theory." I hadn't seen this in years. Am so jazzed.
butyoudontlooksick.com/article
#spoonies #spoonTheory #spoonie #spoons #butYouDontLookSick

But You Dont Look Sick? support for those with invisible illness or chronic illness · The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illnessPlease take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. Click HERE to download “The Spoon Theory” in PDF format. The Spoon Theory by Christine Miserandino www.butyoudontlooksick.com My best friend and I were in the diner, talking. As usual, it was very …
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Kymberly

Quarterly appointment season right now is seeing me spend many, many hours in waiting rooms. So, I started a simple rib sock to keep the anxiety down.

The cute little project bag is the best thing paired with that D ring on the bag. I can’t drop it or fumble too much when called in to see the doc. And bamboo circulars means the yarn doesn’t slip off too easily.

Yarn is old Lana Grossa Meilenweit sock, needles are Takumi Pro by Clover, fav bag is an old ESO messenger from Bethesda before quality went downhill, project bag is handmade - cute kitty fabric from Australia ❤️

So I can get my stitches in for #The100DayProject around the post appointment crashing.

A black cotton small bag with a wide cream stripe that features cute black cats is looped through a D ring on the front flap of a dark brown leather messenger bag. Yarn snakes up out of that project bag to a sock in progress on bamboo circular needles (purple, white and dark grey stripes) that sits on the top of the messenger bag. Leaning behind is a second cloth bag full of medical documentation - quite ridiculously thick. The bag rests on a bench in front of a heater, ready to go to the next appointment.
The sock project bag tucks away inside the dark brown leather messenger bag - it can’t be dropped, and the yarn can’t come spilling out - as the drawstring of the project bag is looped securely through a metal D ring on the front of the messenger.
#knitting#spoonies#Chronicillness
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Valerie Roney

I'm struggling in the comfortable but bone weary state I think might be healing, but it's hard to relax into, because survival. 🤷‍♀️

I continue to yearn for something like long covid recovery homes.

I think things would shift for a lot of people if they could just get a chance to rest deeply and be well nourished for a few months in a row.

#longCovid#brainFog#burnout
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Tom Kindlon

🧵
"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"

eurekalert.org/news-releases/1

Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@lupus @mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #MEcfs #CFS #PwME
1/

News Release 2-Mar-2025 Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds Peer-Reviewed Publication University of Cambridge
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Batichi

1/ Thought folks might find this useful #ADHD #Neurodivergence #Spoonies

youtube.com/shorts/OP3FwBByt78

This took me a long time to figure out because my task brain works the same way. This includes things like cooking, exercising, etc. You really have to find the -actual- smallest chunk, because:

1. Not all tasks have to be done daily so it's important to separate
2. Writing the list out of tasks should be the first task
3. It's best to keep goals to 5 tasks and no more unless you feel up to it

YouTubeUltimate ADHD hack? #adhdprobs #adhd #adhdbrainBy ADHD Love
Replied in thread
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Karen Strickholm

@sunumbral

Here comes TMI!!

Yes pred is a bit of a beast. My body doesn't make enough cortisol, due to an injury to brain from a pituitary tumor. Am seeking the ideal therapeutic dose, aka the "sweet spot"... somewhere around 10-12mgs. The closer I get, the slower I have to go.

Trouble is, when I get sick (am usually hospitalized), must double++ my steroids. Then start taper again, takes me 3-4 weeks. This time I tried to speed it up. Lesson learned! 😊

#DisabilityMatters
#Spoonies

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Karen Strickholm

Here I am! Smile on my face under that mask. 😊

Pharmaceutical situation - Sharp steroid titration down. Must take in some capacity to stay alive (treats Secondary Adrenocortical Insuffiency and NTBI).

Apparently not enough! Went 20mg prednisone > 17mg, been symptomatic all day. Thing is, it's hard to realize sometimes. Ex. Just clicked for me now - nodding off, weakness, fatigue, stomach ache, respiratory, painful joints.

Just a little window into my disability!

#DisabilityMatters
#Spoonies

Me with a nebulizer mask on, vaporizing medicine for my lungs, dark blond hair in a ponytail, blue and white shawl draped over the shoulders
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