My deepest sympathies to the loved ones of #StephanieAston, whose far-too-soon passing illuminates how #WomensPain and #InvisibleIllness are dismissed by medical professionals the world around.

https://www.nzherald.co.nz/nz/stephanie-aston-death-eds-sufferers-call-for-change-after-doctors-accused-woman-of-faking-illness/VX4Q6CAWRVH25I6OCKGQ4KTW4M/

While I have a less lethal form of #EDS than Aston, I have experienced firsthand the shock, surprise, and denial that my symptoms elicit from providers. Without greater awareness about this rare disorder, more women will suffer and die.

#WomensHealth #hEDS #Hypermobility

3🪡 I'm surprised at how many people balk at the idea that their road trips would be hampered by frequent and lengthy charging sessions. As someone with #hEDS and #ChronicPain, this style of #SlowTravel suits not just my moral sensibilities but my physical needs. Getting up to stretch every two or three hours just feels better.

Plus, charging gives time for the kitties to get out of their carrier before we hit the road again.

#CatsOfMastodon

[Automatic repost https://twitter.com/dystobot/status/1648544548660862976]

RT @Aaleayha: My daily struggle:
#hEDS, #CCI, #Chiari, #seizures, #Dystonia, #Dysautonomia, #POTs, #IIH #migraine, #asthma, C1-L5 herniated discs, spinal cord compression, #neuropathy, muscle spasms, #chronicpain #sciatica, #incontinence, #RheumatoidArthritis, stiffness, #IBS, #gastroparesis

[Automatic repost https://twitter.com/dystobot/status/1648271440796319744]

RT @sinclair_jojo: Fun words in bad times
Eds=jelly baby 🪼👶
Dystonia=jitter bug 🎶🐛
AAI=slippittydoodah neck 🧊🩻🦴☠️

Feel free to add your own
#heds
#EDS
#neisvoid @AnonsInTheVoid

Natürlichen freue ich mich über Hinweise auch in bezug auf die Erkrankungen, die ich habe. Aber nicht ausschließlich! Ich möchte auch über andere Zugänge und Bedürfnisse lernen und in einen Austausch gehen.

Insbesondere der Austausch über Yoga und Hypermobilität ist enorm wichtig!

Gerne aus #Berlin aber auch darüber hinaus!

#EDS #hEDS #ADHS #neurodivers #POTS #LongCovid #PostVac #MCAS #mecfs #mecfs_de #fatigue #Schmerzen #hypermobility

Natürlichen freue ich mich über Hinweise auch in bezug auf die Erkrankungen, die ich habe. Aber nicht ausschließlich! Ich möchte auch über andere Zugänge und Bedürfnisse lernen und in einen Austausch gehen.

Insbesondere der Austausch über Yoga und Hypermobilität ist enorm wichtig!

#EDS #hEDS #ADHS #neurodivers #POTS #LongCovid #PostVac #MCAS #mecfs #mecfs_de #fatigue #Schmerzen #hypermobility

Und dann wurde noch V.a. #Somatisierungsstörung aufgeschrieben weil ich mich zu viel.mit.meinen Krankheiten beschäftige. Lol einfach bei Krankheiten, die niemand von alleine sieht, diagnostiziert, behandelt oder die meisten davon Null Plan haben. Ist halt überlebensnotwendig für mich! #EDS #hEDS #POTS #mecfs

Depression hab ich leicht erhöhte Werte gehabt aber keine Diagnose weil sie da sehen, dass es eher eine Krankheitsfolge ist wie ich das beantwortet habe.

6/6 None of this is helped by the fact that I’m still healing from last week’s colposcopy/biopsies. My family doesn’t know that happened (my partner does). Navigating medical events in this family is a minefield (although seemingly only for me). If it turns out to be something, then I’ll tell them. But for now, I’m just exhausted and scared and sore and bleeding and healing, and my fuse is just a little bit shorter than it normally is. So I’m struggling.
#NEISvoid #hEDS #CancerScreening

New strategy- just sleep through as much of the next few days as possible. Trying to give that good ol’ #EDS “poor wound healing” as much help as possible.

#NEISvoid #DisabilityMastodon #hEDS #ChronicIllness #CancerScreening

Okay, but really, I’m going to need my jaw to go back where it belongs. This is a bad one. I’m taking some extra cyclobenzaprine tonight. Hopefully that’ll get everything to calm down and let go enough for me to ease it back in without hurting myself (or, fingers crossed, it’ll work itself out overnight).
#EhlersDanlosSyndrome #hEDS

Fun fact about hypermobile Ehlers-Danlos syndrome: laxity varies, but it’s possible to dislocate or subluxate nearly every joint with little/no trauma. A lot of the time, we can self correct. Honestly, it’s usually safer to do that than go to an ED (I can elaborate if there’s interest!).

Anyway, the right side of my jaw has been subluxated for about 24hrs & I can’t close that side of my mouth & the other side’s nerves are going haywire & I can’t seem to fix it & it’s awful. #hEDS

The cold weather is really affecting my pain levels at the moment so after out-of-the-house jobs this morning we've been staying in and trying to keep warm. I've built two more bags of my #Lego Santa's Visit set; I may be finished by #Christmas, who knows 😅

Really hoping this cold spell is over now as I need at least a half-functioning body next week to make sure I finish the 3rd chapter of my #PhD thesis as planned before I finish for Xmas.

#EhlersDanlos #hEDS #EhlersDanlosSyndrome #AFOL

Helpful tips for Baking with Brain Fog, so sorely needed over here as I struggle to remember where I am in recipes, timing for multi-step cooking, and (embarrassingly) whether or not I actually added a particular ingredient 🤷‍♀️. Spoiler alert-the answer is usually no I didn’t.

https://www.kingarthurbaking.com/blog/2022/06/22/tips-for-baking-with-brain-fog

I hope some of you find it helpful.💗
#MeCFS, #ChronicIllness, #hEDs, #Fibromyalgia, #Disability, #LongCovid

Hi! I’ve never done something like this before, but it’s #IDPwD so why not? My name is Kathleen, and I’m disabled. I’ve got #hEDS (that acts suspiciously like vEDS), #POTS, #MCAS, #SevereAsthma, #CSFLeak, essential tremor, occipital neuralgia…the list goes on and on. You can read about my recent neuro/vision struggles in the Nerve Block Saga link in my profile. This is an Amazon wishlist (also in my profile), mostly for #disability related products, if you’re so inclined: https://www.amazon.com/hz/wishlist/ls/19RHSTWOMQDQ0?ref_=wl_share

Here in the US it’s Thanksgiving. And I’m so thankful for all of you. Mastodon is an incredible platform that has allowed me to find a community of unique, talented, amazing people whom I would otherwise never had the pleasure of knowing.

I’m especially thankful for all you #ChronicIllness, #LongCovid, #MeCFS, #MCAS, #Zebra, #hEDs
and other invisible illness people. Whether quietly observing or loudly advocating for change, your very existence is inspirational. Thank you for being you. 💗

Still getting my head around this world...& Mastodon for that matter!
I'll be sharing #research updates & news from my world as an MSc qualified Reg. Nutritional Practitioner & the world of #nutrition #ehlersdanlossyndrome #EDS #hEDS #HypermobilitySpectrumDisorder #HSD that also crosses over into #POTS #AutonomicDysfunction #Gastrointestinal issues #ChronicPain #ChronicFatigue #MSK issues & much more ...stay tuned y'all. Hopefully this new platform will meet new & interesting connections 👋

Ich stelle mich mal vor.

Ich bin behindert und habe verschiedene Erkrankungen. #EDS #hEDS #POTS #Dysautonomia #MCAS #hardofhearing #Walker #wheelchairuser

Seit dem Booster habe ich #PostVax und würde es wieder tun! Als Risikopatienten_in gibt es in der Pandemie und der immer geringer werdenden Rücksichtnahme nur schlechte Optionen.

Ich bin auf der Suche nach einer Ärzt_in in Berlin, die mir die 4. Impfung und #Paxlovid im Infektionsfall ermöglichen. Meine Hausärztin checkt es irgendwie nicht.

Tossing a few hashtags of things that are relevant in my world out there to maybe make connections. We shall see..
#hEDs , #MECFS, #LongCovid, #nativeplants, #Permaculture, #Visiblemending, #foodie, #naturephotography