#pots

Aus POTS fam, the Australian #POTS Foundation has a webinar coming up called "Living with POTS Community Q & A". If you sign up as a member (for free), you can get a 100% discount on the webinar tickets, so that's also free. And they're going to email recordings out after the webinar, so there's no stress about missing it if you're having a bad day. https://potsfoundation.org.au/ to become a member. Hopefully you would get an email about the webinar but if not, maybe check in with the foundatio ?

"I look fine, but dealing with chronic illness is my full-time job" https://www.publicsource.org/pots-long-covid-navigating-invisible-illnesses/ "My illnesses don’t show up on lab tests, nor do they affect my appearance. Some people think this makes them less real, but a few strong supporters keep me going." @mecfs@fedigroups.social @longcovid@fedigroups.social#LongCovid #MEcfs #POTS #ChronicIllness #InvisibleIllness #Disabiliity

I am exhausted and limp and overheating, but I have finally taken a SHOWER. For days, our main bathroom has been inaccessible due to mold remediation, and I wasn't up to cleaning the dead bugs out of the shower in the backhouse. Today there was a final application of chemicals, and when I came back home, the vapors had dissipated enough for me to finally spend a few minutes back there. Now I'm damp and clean and moisturized and wearing pajamas for the first time in a week. Things will really be better when we can sleep in our bed instead of on living room furniture, but this feels like a nice step. Hey disease twins, is it POTS that makes you want to puke and pass out after a shower? Because something sure does. #ChronicIllness #IIH #POTS #Fibromyalgia #migraines #DiseaseTwins

Hey, we are low on SNAP and we live more than 20 miles of driving from the nearest SNAP EBT compatible store. We need to get a few top up items without having to drive that far, from a more local store, and have some money left for car charging. Can anyone offer some $$$? Some of this is also for essential saline electrolyte drinks to treat @Kuniti_shino@pounced-on.me 's POTS, a syndrome in which the body gets rid of electrolytes it needs to keep and so needs them topping up pretty much every day, otherwise it becomes very weak, dehydrated and sleepy. If so, please send to: https://Ko-fi.com/athakitsune https://Paypal.me/athamanatha Cashapp $athamanatha Or Wise @danield4726 #mutualaid #unpaid #food #medicalhelp #POTS #Buslife #lifestabilization #fedihelp #moneyhelp #currency #fuckcapitalism #fuckinflation #helpfolkslive2026 #helpplease #queermutualaid #transmutualaid #medicalmutualaid #disability #otherkin #otherkinhelp #otherkinmutualaid #LGBTQIA2S #lgbtq #queer #trans #mountainliving #keepingsafe #braceyourselves #winteriscoming #winter #preparation #bureaucracy #driving #car #EV #charging #electriccar #offgrid #offgridliving #science #biology #medicine #gatorlyte #bodyarmor

Therapy via Messaging https://chroniclivingtherapy.com/insights-text-based-therapy/ Screenshot from latest edition of the Chronic Living Therapy email bulletin #MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness@mecfs@fedigroups.social @longcovid@fedigroups.social #POTS @pots@fedigroups.social

You guys wanna see some #pots? #pottery #ceramics #clayart

From the US 🇺🇸 Plasma Cytokine and Caspase-1p20 Profiles in Pre-Pandemic and Long COVID-Associated Postural Orthostatic Tachycardia Syndrome https://www.mdpi.com/2227-9059/14/7/1605 Screenshot from Science for ME weekly update #LongCovid #POTS @longcovid@fedigroups.social @pots@fedigroups.social

Ik dacht dat “chronisch zieken moeten oppassen met hitte” te maken had met dat je al ziek bent en dan sneller uitgedroogd raakt en zo. Mais non! Het gaat niet om het water. Het gaat niet om de warmte. Het gaat om de complete anarchie in het kansloze bosje neuronen dat ooit een prima zenuwstelsel vormde. #LongCovid #pots #dysautonomie

Je cherche #CestPourUneCopine (vraiment) un'e cardiologue dans la région de Grenoble (jusqu'à Lyon) qui connaisse un peu la dysautonomie, ou au moins ne répète pas comme un perroquet "déconditionnement à l'effort" devant à peu près tout. Et qui prenne de nouvelleaux patient'es. Si iel connait un peu le SED c'est un plus. Boosts appréciés 🙏 #Grenoble#Lyon#Cardiologue#Help#POTS#Dysautonomie#SEDh

RE: https://disabled.social/@tomkindlon/116640578558884764 Quote: "Long COVID did not create medicine’s discomfort with invisible illness. It exposed a preexisting pattern that millions of patients had been navigating for decades. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, dysautonomia, POTS — these conditions share remarkable clinical overlap with Long COVID, and they share something else too: a history of being dismissed, minimized, and inadequately researched" @mecfs@fedigroups.social @longcovid@fedigroups.social#MEcfs #LongCovid #POTS #MedMastodon

Please share, if you can. I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖 #NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund RE: https://plasmatrap.com/notes/aoctlai1vp

Pelvic venous disorders and orthostatic intolerance: A systematic review of diagnostic associations and treatment outcomes. - Abstract - Europe PMC https://europepmc.org/article/MED/42372331 #POTS

🆘 Een vriendin van mij heeft hoogstwaarschijnlijk ook post/long-covid met POTS en PEM. Ze wordt van het kastje naar de muur gestuurd en als er al hulp is (zoals een kliniek), dan kan ze dat bij lange na niet betalen (want armoede). Van al dat geregel is ze elke keer dagen van slag. De hittegolf van laatst voelde voor haar alsof ze aan het doodgaan was. Ze kan het huis ook niet koel krijgen, wat ze ook doet (incl. airco). Mogelijk nieuwe hittegolf kan echt fataal worden. Ze vraagt nu vooral iemand die met haar kan nadenken over wat te doen. Ik zelf heb er geen verstand van en kan alleen praktische dingen doen. Dus als mensen ideeën hebben, laat het me weten. Ja dit is een hulpvraag. 😢 🙏🏻 Volkskrant: *Nergens plek voor ernstig zieke postcovidpatiënten: ‘Ik voel me een onbestelbaar postpakketje’* "Linda Nugteren (39) en Nicole van Keulen (45) hebben allebei al ruim vijf jaar ernstige postcovid. Ze hebben 24 uur per dag zorg nodig, maar er is nergens plek omdat hun ziekte formeel niet blijvend is." https://www.volkskrant.nl/kijkverder/v/2026/postcovid-longcovid-patienten-revalidatie-ziekenhuis~v3102909 (🆓 https://archive.is/hIzqm)#PostCovid #LongCovid #Covid #POTS #PEM #MutualAid #Hulpvraag

The Irish ME Trust organised a webinar on disability and carer payments in Ireland. Recording: https://youtu.be/y0ST_NreH8I Slides: https://1drv.ms/p/c/94454629db95df81/IQAr_iArcGVGRasX28RXs0neAcuhHj90wY4Sn_fXmQrbPvU?e=Ea5hLu My updated notes after they were proofread by somebody (file also includes all slides) https://1drv.ms/b/c/94454629db95df81/IQC6O8ZIzpiaQ6a-OSgEIJmCAYuOUAN7dDfsxhjzou5QFc0?e=ktErgx #MEcfs #PwME #LongCovid #POTS @mecfs@fedigroups.social @longcovid@fedigroups.social @pots@fedigroups.social #chronicillness #mastodaoine #spoonie

Mijn favoriete onderdeel van winkelen is plat op de grond liggen en zeggen “niet schrikken, is zo over” #pots

If you have #POTS and/or other types of dysautonomia and you take Corlanor aka Ivabradine, there’s a recall, check your pills:

🔥 psa for anyone taking quercetin on a regular basis 🔥 this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked! (and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary) i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay take care people and good luck #MCAS #POTS #hEDS #LongCovid #allergies

RE: https://toot.wales/@alexisbushnell/116443842047664326 People with #PoTS - is this standard for that? It was actually 2 hours I was on the floor. And then yesterday it happened again but 2 hours laying in bed with shortness of breath, body twitching, out of it. #ChronicIllness