It's Time to Throw Away the 'Coulda, Woulda, Shouldas' and Practice Radical Rest When you're chronically ill you can't push your body the way non disabled people do. You have to learn to rest. There's few words more damaging to us than the 'coulda, woulda, shouldas'

If you’re struggling to disconnect and protect your peace right now… my article on radical rest might help.

When you’re chronically ill you must learn to rest. You either do it voluntarily, or the body will find a way to force you.

This skill will be extra important in the coming weeks:

New research article by @ruhoy.bsky.social & others finds that people w/ hEDS have a higher frequency of unique musculoskeletal comorbidities that require surgical intervention, as well as a higher frequency of concurrent conditions (MCAS, gastroparesis, POTS etc)
www.frontiersin.org/journals/neu...

chronically ill people tend to downplay their symptoms because being honest about them tends to weird people out.

chronically ill
#chronicallyill #chronicillness #autoimmune

for every action there is an equal and opposite health flare

chronic illness flares
#chronicillness #chronicallyill #chronicillnessmemes

A Great starter pack for us Zebras
#Hypermobility
#hEDS
#HypermobileEhlersDanlos
#PoTS #Dysautonomia

go.bsky.app/GcGzAae

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Norris Lab Finds HEDS Gene: Kallikrein – EDSAwareness.com Chronic Pain Partners is excited to share a significant breakthrough from the Norris Lab regarding hypermobile Ehlers-Danlos Syndrome (hEDS). After a long wait, the research, spearheaded by Dr. Cortne...

The @Norrislab at MUSC unveiled their genetic finding in June 2024 behind some #hEDS patients: a Kallikrein gene. (Not a collegen defect!) Still needs peer review, but it may explain some comorbidities too:

buff.ly/4cj40El

#EDS #HSD #MCAS #Genetics #NEISvoid #Zebras

New Research Study Finds Everything is Connected, As Many Patients Suspected – EDSAwareness.com New hypermobile EDS research shows insurers the costly data behind unrecognized patient care.

New Research Study Finds Everything is Connected, As Many Patients Suspected

https://buff.ly/3YLItPq

#EDS #hEDS #Hypermobility #HSD #Fibromyalgia #POTS #Dysautonomia #IBS #MCAS #MCD #MedEd #MedTwitter #Doctors #Nurses #NEISvoid #Chiari #CCI #Zebras

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Research News: Could a Blood Test for hEDS & HSD Be Possible? – EDSAwareness.com Italian researchers publish a study with the support of the EDS Society, potentially finding a protein that could lead to a blood test for hEDS and HSD. More research is needed, but it's a hopeful…

Research news: Could a blood test for hEDS and HSD be possible? It sure looks like it…

https://buff.ly/3XEDS1c

#EDS #hEDS #HSD #Hypermobility #NEISvoid #MedEd #Genetics #Science #Zebras #Doctors

Woman in a wheelchair in a hallway. Spooniesky written find your people.

If you are chronically ill and want to connect with other Spoonies or just support Spoonies add #spooniesky to your posts.

REPOST for traction.

#ihstrong #iih
#chronicalyfabulous #chronicillness #addspooniesky
#spoonies #spooniesky
#blacksky #brainpain #invisibleillness #disabledsky

I am feeling great today. Official sources state that this is false and misleading

chronically ill
#chronicillness #chronicallyill #chronicillnessmemes

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4 panel comic 1st panel: santa with a little girl on her lap and she says 'for xmas I want a dragon!" 2nd panel: santa says 'be realistic' 3rd panel: girl says 'i want to have a healthy body with no pain' 4th panel: santa says 'what color do you want your dragon' girl says 'red' while crying.

Art by Dami_Lee on Tumblr
#chronicillness #chronicallyill #chronicillnessmemes

Recommended Books- Living and Coping with EDS and Related Diseases Recommended Books provides a listing or books and other reading resources for those living and coping with EDS, MCAD and other comorbid diseases. A must see and read list of books!

A growing list of books on the Ehlers-Danlos Syndromes & Hypermobility:

ohtwist.com/eds-resource...

#EDS #HMS #fibromyalgia #meded #FOAMed #doctors #nurses #autism #MCAD #NEISvoid #fibro #ChronicIllness #zebras #EhlersDanlosSyndrome

Chronic Illness/Disability Stop making me feel bad for being unable to keep up with you. -I did not choose this -I did not want this - I did not make this happen -I'm not faking this -I'm not asking for sympathy Please understand that I'm doing the best that I can.

chronic illness and disability
#chronicillness #chronicallyill #disability

Comorbidities Common with Ehlers Danlos Syndrome Comorbidities (unofficial) listing of diseases and syndromes that are commonly found in people with Ehlers Danlos Syndrome.

Patients with #EhlersDanlos or #Hypermobility Spectrum Disorders can spring CSF leaks anywhere along their dura and from noses & ears

ohtwist.com/about-eds/co...

#EDS #HSD #meded #FOAMed #doctors #nurses #medstudents #MedTwitter #NEISvoid

Find Answers Faster: The EDS411 Living Library – EDSAwareness.com The new hyperlink hub of resources enables Ehlers-Danlos syndrome (EDS) patients to take control of their health with access to searchable, credible insights by keyword or category. Knowledge is a…

Find Answers Faster via The New EDS411 Living Library - here to help you wade through the vast sea of EDS information to be found on the internet and social media:

https://buff.ly/3XzMcQF

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #MedEd #NEISvoid #Zebras

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*whispers* Glasses are a disability and accessibility aid. They've just been normalized so people don't generally think of them as such. Now, imagine if all other aids were just as destigmatized and normalized.

Resistance to local anesthesia in people with the Ehlers-Danlos Syndromes presenting for dental surgery People with the Ehlers-Danlos Syndromes (EDS), a group of heritable disorders of connective tissue, often report experiencing dental procedure pain despite local anesthetic (LA) use. Clinicians have b...

Resistance to local anesthesia (seen) in people with the Ehlers-Danlos Syndromes presenting for dental surgery 2019 Schubart, Schaefer, Janicki et al
buff.ly/2wEJ4co
#EDS #hEDS #Hypermobility #HSD #fibro #Fibromyalgia #NEISvoid #MedTwitter #Dentistry

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