Mastodawn

Just realized the weight ive recently put on might actually be muscle??? Crying bc no other reaction feels to quite fit this emotion im experiencing/failing to name

I havent been trying to gain or lose weight, just doing range of motion and flexibility stuff plus the odd dance movement with a fancy French name... i have a few what feel to me both modest and extravagant dance aspirations, so in some ways this development makes sense, its just so incredibly alien to me to actually detect progress toward those goals!!

For context: ive been #chronicallyill since at least 2012, and was fully bedridden for at least seven of those years. Im still rather severely mentally ill but my body has been doing somewhat better lately (ongoing problems notwithstanding), for which im endlessly grateful and going to make the most of while I can, whatever that ends up looking like

Random snaps my partner took of me the other day, for attention and bc i look fantastic 🩷

#ChronicFatigue #ChronicPain #mecfs #fibromyalgia #hypermobility

W_Dräger 🦉Mar 26

As a #disabled #gardener…it is really frustrating when the weight of tools is not listed online when purchasing ⛏️

#gardening #HEDS #fibromyalgia #hypermobility #badback

Morgan ⚧️Mar 26

Any guitar* players on fedi with EDS or painful hypermobility? Do y'all have advice on how to cause less pain when I practice/perform? So far I've been switching sides, which seems to help with the long-term pain of always playing "right-handed," but I still end up in pain on whichever side of my neck/shoulders the fretboard was on.
*Or bass guitar, banjo, pretty much anything on a guitar strap

#askFedi #duckDuckFedi #musician #disabledMusician #guitar #hEDS #eds #hypermobility #chronicPain

Daisee (she/her)Mar 18

#3GoodThings

1. Shoes
2. Crutches
3. Walking

#Walking #Mobility #Hypermobility

Strfnurfn Mar 10

ok but in this bold new age of biometric logins, no one's talking about accessibility for those of us with weak-ass fingerprints. #hypermobility #teamWonkyCollagen #mostlyKidding

Show thread

Kirsty Mar 2

They have responded to public outcry 👍

Health New Zealand has removed controversial recommendations that people suffering from a rare connective tissue disorder not be given certain treatments.
It follows criticism from patients and advocacy groups.

https://www.rnz.co.nz/news/national/588410/health-new-zealand-removes-some-new-advice-about-ehlers-danlos-syndromes-and-hypermobility-spectrum-disorder

#EDS #POTS #MCAS #Hypermobility #Hypermobileehlersdanlossyndrome #ChronicIllness
see above post

Health New Zealand removes some new advice about Ehlers-Danlos syndromes and hypermobility spectrum disorder

The new guidance published last week, and described as a review of current evidence, has been criticised by patients and advocacy groups.

RNZ

Kirsty Mar 2

I have many friends who live with #EDS #POTS #MCAS #Hypermobility #Hypermobileehlersdanlossyndrome and related #ChronicIllness conditions.
The conditions are not easy to live with.

News like this does not help 😣
https://www.rnz.co.nz/news/in-depth/588334/official-advice-about-ehlers-danlos-syndromes-and-hypermobility-spectrum-disorder-labelled-incredibly-damaging

Official advice about Ehlers-Danlos syndromes and hypermobility spectrum disorder labelled ‘incredibly damaging’

Doctors are divided over treatment for a rare disorder, but some living with it say the official advice is misleading.

RNZ

Oh Joy Sex Toy Feb 17

https://www.ohjoysextoy.com/wrestling-with-my-body-inam
Inam discovers Play Flighting in their explorations with their disability and desires.

Become our Friend With Benefits on https://patreon.com/OhJoySexToy Your support directly pays the artists we commission to create these original comics just for our site.
#Webcomic #Hypermobility #EhlersDanlosSyndrome