Juchti<p>Ich möchte euch noch auf die Arte-Doku "Chronisch krank, chronisch ignoriert" hinweisen, die die Schwere der multisystemischen Erkrankungen <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> und <a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> thematisiert, aber auch die Zusammenhänge zu den Erkrankungen <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a>, <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a>, <a href="https://mastodon.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a>, <a href="https://mastodon.social/tags/FQAD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FQAD</span></a>, <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> etc. </p><p>Die Doku ist auf YouTube und in der Arte-Mediathek und zeigt eindrücklich das Leid der Betroffenen. </p><p>Wann passiert endlich etwas?<br><a href="https://youtu.be/YnnDSHPaAsY?si=aSaNk1Mrt0TOyo6i" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">youtu.be/YnnDSHPaAsY?si=aSaNk1</span><span class="invisible">Mrt0TOyo6i</span></a></p>
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#eds
2 posts · 2 participants · 0 posts today
Broadwaybabyto<p>When you’re healthy you believe you’ll always be healthy. That if you get sick it’ll be a temporary slow down & you will be back to normal after a few days.</p><p>When you learn that isn’t true, when you come face to face with the reality of how quickly you can lose your health, you become cautious.</p><p>This caution is part of protecting your baseline, and it’s a necessary survival skill when chronically ill. </p><p><a href="https://www.disabledginger.com/p/maintaining-a-baseline-means-everything" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">disabledginger.com/p/maintaini</span><span class="invisible">ng-a-baseline-means-everything</span></a></p><p><a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://zeroes.ca/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a> <a href="https://zeroes.ca/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://zeroes.ca/tags/pots" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pots</span></a> <a href="https://zeroes.ca/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ableism</span></a> <a href="https://zeroes.ca/tags/health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>health</span></a></p>
Tom Kindlon<p>(Worcester, Massachusetts)<br>Healthy Controls and people aged 12+ with ME/CFS, <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a>, <a href="https://disabled.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a>, long Covid, etc sought for research study</p><p>Image is from MassME April Newsletter</p><p><a href="https://www.massmecfs.org/newsletters/922-2025-04-april-newsletter" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">massmecfs.org/newsletters/922-</span><span class="invisible">2025-04-april-newsletter</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a><br><a href="https://disabled.social/tags/PosturalOrthostaticTachycardiaSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PosturalOrthostaticTachycardiaSyndrome</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/pots" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>pots</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/fibromyalgia" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>fibromyalgia</span></a></span><br><a href="https://disabled.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibromyalgia</span></a> <a href="https://disabled.social/tags/Fibro" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibro</span></a> <a href="https://disabled.social/tags/FMS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FMS</span></a> <a href="https://disabled.social/tags/FM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FM</span></a></p>
Steph (they/them)<p>I actually had no idea I was hypermobile until my partner (a former sports scientist) started pointing out that my range of motion is abnormal and I bend in ways I shouldn't. </p><p>Then we started noticing other things, like the fact that I am not losing any flexibility with age, my ankles are pronated, my joints click and crunch like crazy, I don't like standing for long periods of time (hurts!) but I can walk FOREVER, I bruise easily, I get dizzy when I stand up and tire quickly despite being quite fit, my knees are AWFUL, I have very long fingers and toes, I've had digestive issues my whole life, I have like no face wrinkles but my hands look like a 60yrold's...</p><p>And then I realised that the weird horrible feeling I get in my hips and shoulder joints sometimes, like they're out-of-joint and unstable, is because THEY ARE. They're subluxating.</p><p>And now I suspect my migraines are partially caused by joint instability. Specifically, my neck. I have an orthopaedic pillow and a cervical traction device and those help a lot.</p><p>Not a huge surprise. <a href="https://hachyderm.io/tags/ADHD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ADHD</span></a> and <a href="https://hachyderm.io/tags/hypermobility" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hypermobility</span></a> are co-morbid. However, I haven't been officially diagnosed. Crucially, I don't have a positive Beighton score: my hypermobility is primarily in my arms and legs. So I don't know if I'd be taken seriously. I also wouldn't consider it disabling. Annoying, maybe. I clearly got a milder case. I know a lot of folks with <a href="https://hachyderm.io/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a> who really suffer!</p><p>So maybe I'll get properly checked one day? For now I'm just working on strengthening my muscles to support my shitty joints. And also on trying to pop my left collarbone back into place, because it's sticking out right now for no good goddamned reason...</p>
This Account Kills Fascists<p><span class="h-card" translate="no"><a href="https://beige.party/@farah" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>farah</span></a></span> Thank you. I've been trying to, yanno, live a life, but I think it just got a hundred times harder. And it wasn't all that easy to begin with. Fucking <a href="https://mastodon.social/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a></p>
This Account Kills Fascists<p>Apparently, I'm a gremlin - do not feed me after midnight. In my case, I get dysautonomia-induced high blood sugar.</p><p>I love chronic illness!</p><p><a href="https://mastodon.social/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a> <a href="https://mastodon.social/tags/ehlersdanlossyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ehlersdanlossyndrome</span></a> <a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a></p>
This Account Kills Fascists<p>I have to keep reminding myself that I'm allowed to rest even when crazy shit is going on around me. The movement will go on, and when I am able to come back, someone else can take a break. </p><p>But right now I have bronchitis, so I need to sit the fuck down and shut the fuck up.</p><p><a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://mastodon.social/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a> <a href="https://mastodon.social/tags/ehlersdanlossyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ehlersdanlossyndrome</span></a></p>
JulieR<p>and...I completely forgot to watch my neck posture until halfway through, so that'll be like three days of headaches. </p><p>I mean, the misery of how I feel afterwards is a large part of why I struggle to make it a habit. Just saying. But, I need some movement or I hurt.</p><p><a href="https://wandering.shop/tags/dysautonomia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>dysautonomia</span></a> <a href="https://wandering.shop/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a></p>
Anke<p>There's a tracker app designed for people with chronic health problems who'd like help with pacing!</p><p>I just heard about it from a blogger I follow on Tumblr, and thought I'd spread the word.</p><p>Blog entry: <a href="https://thebibliosphere.tumblr.com/post/774126670579908608/visible-activity-tracking-for-illness-not" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thebibliosphere.tumblr.com/pos</span><span class="invisible">t/774126670579908608/visible-activity-tracking-for-illness-not</span></a></p><p>App website: <a href="https://www.makevisible.com/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">makevisible.com/</span><span class="invisible"></span></a></p><p><a href="https://social.scribblers.club/tags/chronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicIllness</span></a> <a href="https://social.scribblers.club/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://social.scribblers.club/tags/fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fibromyalgia</span></a> <a href="https://social.scribblers.club/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a>, <a href="https://social.scribblers.club/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a></p>
This Account Kills Fascists<p>Today I need to:</p><p>Clean common spaces for a guest<br>Make some more bujo pages<br>Sort amazon returns<br>Find UV lamp<br>Do self-tan</p><p>Yesterday I was too fatigued to do much more than breathe, and at times even that was a struggle. <a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> is such a pain in my ass, literally and figuratively.</p><p><a href="https://mastodon.social/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a> <a href="https://mastodon.social/tags/ehlersdanlossyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ehlersdanlossyndrome</span></a> <a href="https://mastodon.social/tags/todolist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>todolist</span></a></p>
Broadwaybabyto<p>New here? Struggling with Long Covid or think you might have Long Covid? </p><p>I’ve written a series of guides about two of the most common and difficult to diagnose comorbids: POTS and MCAS.</p><p>If you’re newly diagnosed or undiagnosed, if you’ve been told it’s “all in your head”… read on! 🧵 </p><p><a href="https://zeroes.ca/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCOVID</span></a> <a href="https://zeroes.ca/tags/covidisairborne" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>covidisairborne</span></a> <a href="https://zeroes.ca/tags/covidisnotover" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>covidisnotover</span></a> <a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://zeroes.ca/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a> <a href="https://zeroes.ca/tags/pots" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pots</span></a> <a href="https://zeroes.ca/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://zeroes.ca/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Dysautonomia</span></a> <a href="https://zeroes.ca/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ableism</span></a></p>
JulieR<p>Does anyone with <a href="https://wandering.shop/tags/arthritis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>arthritis</span></a> or <a href="https://wandering.shop/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a> know a trick to opening clam shell containers? They cause me terrible pain, and today I pulled a finger joint of place trying to open one.</p>
Broadwaybabyto<p>A few years ago I caved and bought a cheap Robo vacuum. </p><p>I had resisted for years - scolding myself with gaslighting comments like “your condo is so small - you SHOULD be able to vacuum yourself”</p><p>I was so mean to myself that I refused an accommodation tool that would help me</p><p>This is a common experience for disabled people. We often struggle to ask for the help we need. We feel bad about requiring assistive devices or items that will make life easier. </p><p>We see them as a “frill” because other people have taught us we don’t “deserve” them </p><p>I bought the cheapest one I could find and it still sat in a box in my apartment for months before I finally set it up. </p><p>It sat in the corner taunting me. Reminding me that I shouldn’t have wasted money, that I’m pathetic for not being able to clean my own floor </p><p>This tiny little tool that most people buy without a second thought caused me so much mental anguish. </p><p>Why? Internalized ableism. </p><p>It was the same thing with a shower chair. I resisted for years because I felt it meant I was “lazy” or “giving up” </p><p>Imagine a non disabled person thinking that way? They wouldn’t. </p><p>When you’re non disabled you’re taught that you DO deserve all the nice things.</p><p>You need help with something? Cool! You earned it!</p><p>You want a Robo vacuum to save you time? Go get it you worked hard for it! </p><p>It’s capitalism and ableism all rolled into one. </p><p>This idea that if you’re economically active and healthy, you are entitled to all the great things. </p><p>If you’re not? Sit down and accept whatever scraps the world throws at you and be grateful for them </p><p>It’s harmful and it results in people pushing themselves to the point of harm</p><p>I passed out in the shower and dislocated my shoulder before finally getting a chair</p><p>I face planted while vacuuming and ended up black and blue.</p><p>For what? To appease some outdated notion of worth? </p><p>I firmly reject our societal conception of worth. </p><p>We all have worth. A person shouldn’t have to work or have good health to be considered deserving of help, accommodation or love. </p><p>So I set up my Robo vacuum… and something incredible happened </p><p>I fell in love with it. He became my best friend. This tiny little device brought me more joy than I ever thought possible. </p><p>With the touch of a button my entire floor was cleaned and I didn’t have to exert or risk my health </p><p>My mast cells improved because I was able to stay on top of dirt and dust better. </p><p>My POTS body appreciated not spending days in a horrible flare after an attempt at vacuuming that didn’t do half as good a job as my Robo pal. </p><p>He broke the other day - and I’m not embarassed to admit that I cried. </p><p>He served me faithfully for years … and had clearly been tired these last few months. </p><p>But when he made his final sad little “meep meep” noise… I shed a tear </p><p>I cried for the loss of my little buddy, but also for everything he gave to me. </p><p>He represented the beginning of my journey to lean into my disabilities. Start accepting and accommodating my body instead of fighting it. </p><p>It was a huge gift. It relieved me of an enormous load I didn’t even know I had been carrying. </p><p>Now I have various bathroom safety tools, I’ve baby proofed parts of my home, I have a carer help me with showers and other difficult activities of daily living. </p><p>I know now that I’m worth it - and in a weird way my Robo helped teach me that. </p><p>We are all worth it - and we need to do whatever we can to remind ourselves (and each other) of that fact every single day /14<br>The world can be a hateful place with many people looking to tear us down.</p><p>Never forget your worth isn’t about what’s in your bank account, how healthy you are or what your job is. </p><p>It’s about YOU. Who you are and what you bring to the world</p><p>You are loved. Just as you are.</p><p><a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ableism</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://zeroes.ca/tags/disabilityjustice" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabilityjustice</span></a> <a href="https://zeroes.ca/tags/accommodations" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>accommodations</span></a> <a href="https://zeroes.ca/tags/acceptance" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>acceptance</span></a> <a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://zeroes.ca/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a> <a href="https://zeroes.ca/tags/pots" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pots</span></a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://zeroes.ca/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://zeroes.ca/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a> <a href="https://zeroes.ca/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a></p>
UnCoveredMyths<p>Tired.</p><p>Had a doctor appointment this morning. Far too early. </p><p>My hands hurt, and I can barely type.</p><p>What do other people with <a href="https://autistics.life/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a> recommend for finger tip pain control? </p><p>The joint closest to the fingernail is the one that keeps bending both ways. I can no longer type without pain. It is in two to three fingers on each hand.It is almost impossible to use the microwave, or flush the toilet in the normal way.</p><p>This has been may major health issue in the last month.</p><p>I have been using sticky ace bandages around each of the fingers, and they provide a little support. However, taking them off to wash my hands, go to the bathroom, etc, gets exhausting.</p>
Broadwaybabyto<p>If you’re looking for resources to assist someone new to Long Covid, ME/CFS, POTS or MCAS - I’ve been slowly building guides that I hope will assist patients, caregivers AND healthcare workers who are willing to read them. </p><p>I’ve completed a three part series on MCAS and a separate three part series on POTS which I’ve compiled into a mega thread I will link below. </p><p>People have already provided great suggestions for a follow up series - including things like how to regulate temperature, how to handle dating and/or sex, how to discern which condition is driving which symptoms, how to talk to doctors in a way that will get them to understand, and how to cope with being a parent to a kiddo with these conditions. </p><p>If anyone has other suggestions - please reach out! I’m also working on a series about EDS which I hope will tie some of these topics together. As they say - when you can’t connect the issues think connective tissues! </p><p>Also - if you’re a parent to someone with any of these difficult to manage conditions and want to provide feedback, suggestions or contribute - please get in touch. I would love to connect!</p><p><a href="https://zeroes.ca/@broadwaybabyto/113615351711064251" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">zeroes.ca/@broadwaybabyto/1136</span><span class="invisible">15351711064251</span></a></p><p><a href="https://zeroes.ca/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://zeroes.ca/tags/pots" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pots</span></a> <a href="https://zeroes.ca/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a> <a href="https://zeroes.ca/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a> <a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://zeroes.ca/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a> <a href="https://zeroes.ca/tags/covidisairborne" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>covidisairborne</span></a> <a href="https://zeroes.ca/tags/covidisnotover" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>covidisnotover</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a></p>
Broadwaybabyto<p>I’m struggling with whether I have the spoons and emotional bandwith to write an article on Assisted Dying policies. It is such a complicated issue and people have big feelings about it (understandably). </p><p>While I debate this in my monkey mind - I’m going to share a post I wrote on another social media site to explain why as a disabled person in Canada - I have concerns that medical assistance in dying has become dangerous. </p><p>People outside of Canada are unaware what our program has turned into - so I hope this will shed some light on it and help others recognize WHY I’m so torn on this issue:</p><p>I’m going to tell the story of “Kat” - a young woman with EDS (which I also have) living in British Columbia. She needed pain management, palliative care and a family doctor - but was unable to access these basic medical options. </p><p>She finally applied for MAiD thinking it would open up treatment options - because an ethical program would do just that. I know it sounds strange to apply for death as a means of getting treatment - but in Canada our law says ‘all options must be exhausted before MAiD’. Many people with treatable conditions apply thinking that if approved to die - our system will expedite the care needed to live. </p><p>What’s worse - her death was then misrepresented and romanticized in a video advertisement about the benefits of MAiD. The fact that she wanted to live and was denied medical care that could have saved her was conveniently left out. </p><p>Why do we need to romanticize assisted death? People who are trying to silence disabled voices should ask themselves that question. Most people agree letting a patient in unbearable suffering choose when they die is compassionate. It shouldn’t NEED a PR push.</p><p>Perhaps it’s because the powers that be are trying to inoculate the public so they won’t notice when more and more people with treatable conditions and disabilities start dying? So they craft a narrative about how peaceful and joyful it is? </p><p>No amount of PR or softly lit videos can change the fact that people with disabilities are dying who don’t WANT to die. People are fighting for years for medical care - being denied and left to suffer - and then presented with MAiD as the “solution”. </p><p>I’m in no way suggesting we not allow people the right to die - but we MUST centre the voices of those most at risk of harm and abuse. We can’t keep dismissing the concerns of disabled people just because we MAY want the option when our time comes. </p><p>The lack of outrage over deaths like “Kat” show how little respect there is for the lives of disabled people. How many people think we’re “better off dead” and are certain if they became disabled - they wouldn’t want to live </p><p>You can’t possibly know what you would want until it happens to you. Many people think disability is worse than death - until it happens to them. Then they realize that we can and do have full lives and WANT to keep living them. </p><p>Until you’ve gone through it - you shouldn’t presume to tell us how to feel about it. I don’t judge others for wanting the option - don’t judge me for calling out the ways it puts me at increased risk of coercion, loss of medical care and premature death.</p><p>We must hold the system accountable. If someone can be helped - we have a moral responsibility to at least TRY and help them before shepherding them to their death. </p><p>If more people realized the dangers of coercion - and cared about disabled lives - there would be more outage.</p><p>Please listen, learn & put aside your hypothetical scenarios - we must deal with what is currently happening We have to find a way to protect people like me. People like “Kat”. Those deemed “undesirable” or economically inactive. If we don’t - more of us will die.</p><p>I support the right to die - but let’s make sure we’re also providing people the right to live.</p><p><a href="https://bc.ctvnews.ca/easier-to-let-go-without-support-b-c-woman-approved-for-medically-assisted-death-speaks-out-1.5937496" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bc.ctvnews.ca/easier-to-let-go</span><span class="invisible">-without-support-b-c-woman-approved-for-medically-assisted-death-speaks-out-1.5937496</span></a></p><p><a href="https://zeroes.ca/tags/MAiD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MAiD</span></a> <a href="https://zeroes.ca/tags/assisteddying" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>assisteddying</span></a> <a href="https://zeroes.ca/tags/euthanasia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>euthanasia</span></a> <a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ableism</span></a> <a href="https://zeroes.ca/tags/discrimination" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>discrimination</span></a> <a href="https://zeroes.ca/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eds</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://zeroes.ca/tags/disabilityrights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabilityrights</span></a></p>
Ruth Cheesley (she/her)<p>Super grateful to the lovely folks at Elmy Cycles in Ipswich for their fantastic bike fitting service! </p><p>Took my new-to-me <a href="https://mastodon.online/tags/Specialized" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Specialized</span></a> road bike in to get everything set up for my <a href="https://mastodon.online/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a> body, and was super impressed with the thorough workup. </p><p>Everything from cleats to saddle to handlebars checked, tweaked and even added extra padding to support my broken wrist side which can get a bit sore over time.</p><p>Even had the mechanic give it a once-over and fix a couple of small issues.</p><p><a href="https://mastodon.online/tags/Cycling" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Cycling</span></a> <a href="https://mastodon.online/tags/Ipswich" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Ipswich</span></a></p>
Anya<p>Re-Introduction Thread:</p><p>Hi! My name is Anya.</p><p>I am a 38 year old, <a href="https://eldritch.cafe/tags/disabled" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabled</span></a>, <a href="https://eldritch.cafe/tags/autistic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autistic</span></a>, <a href="https://eldritch.cafe/tags/trans" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>trans</span></a> woman living in the UK.</p><p>I have <a href="https://eldritch.cafe/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a>, <a href="https://eldritch.cafe/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a>, <a href="https://eldritch.cafe/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibromyalgia</span></a>, <a href="https://eldritch.cafe/tags/perniciousanaemia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>perniciousanaemia</span></a>, <a href="https://eldritch.cafe/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a>, <a href="https://eldritch.cafe/tags/ChronicMigraine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicMigraine</span></a>, and <a href="https://eldritch.cafe/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicPain</span></a>, and likely many others.</p><p>I am unemployed and ultimately unemployable, and I am back living with my parents after my life kinda collapsed.</p><p>I, unsurprisingly, have depression, trauma, PTSD, etc.</p><p>All of this shapes and informs my posting quite heavily. So if any of that bothers you, probably best to not follow.</p><p>I started <a href="https://eldritch.cafe/tags/SexWork" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SexWork</span></a> in 2021, and still have a Fansly available, but due to my disabilities I don't really have the energy to keep up with it, as much as I want to return.</p><p>Things I like (and will also post about) :</p><p>- Gaming<br>- Movies & TV<br>- Horror<br>- Zombies<br>- Maps<br>- Assassin's Creed<br>- Resident Evil<br>- Silent Hill<br>- Zelda<br>- Control, Alan Wake, and the RemedyVerse<br>- History<br>- Sci-Fi & Fantasy<br>- Post Apocalyptic Fiction<br>- Probably a lot more that I'm forgetting</p><p>Other things I'm likely to post about:</p><p>- Trans Rights<br>- LGBTQIA+ Rights in general<br>- Disability Rights<br>- Sex Worker Rights<br>- Basically Human Rights & Equity<br>- Politics<br>- World Events<br>- So many other subjects that I cannot predict</p><p>EDIT:</p><p>Other things I like and will post about that I can't believe I forgot and nobody reminded me:</p><p>- Tangled (the Disney Princess film & franchise)</p><p>- Making Shitty Memes On My Phone</p><p>- Making Headcanon Timelines for fictional media</p>
Inner Visioner<p>Mornin’ Masto massive.👋😎</p><p><a href="https://mastodonapp.uk/tags/3goodthings" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>3goodthings</span></a> <a href="https://mastodonapp.uk/tags/ThreeGoodThings" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ThreeGoodThings</span></a> </p><p>1 - It was sunny, bright and dry yesterday. In November. In Northern England! 🌇</p><p>2 - Good appointment at <a href="https://mastodonapp.uk/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a> physio. Very kind, very knowledgeable woman working in the NHS. 🙆♀️</p><p>3 - Enjoying doing research and taking action to detach from tech bros in my life. Takes a lot longer than expected, but feels worth it. ⛓️💥</p>
Emily Johnson<p>Hi friends — I updated my neurosurgical fundraiser with a few posts explaining unfortunate recent care setbacks, extra expenses, financial updates</p><p>Please donate or share if you can, thank you ❤️ <a href="https://disabled.social/tags/DisabilityTwitter" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DisabilityTwitter</span></a> <a href="https://disabled.social/tags/Neurosurgery" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Neurosurgery</span></a> <a href="https://disabled.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> <a href="https://disabled.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> <a href="https://disabled.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pwME</span></a> <a href="https://disabled.social/tags/CCI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CCI</span></a> <a href="https://www.gofundme.com/f/help-emily-get-medical-care" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">gofundme.com/f/help-emily-get-</span><span class="invisible">medical-care</span></a></p>
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