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#NEISvoid

1 post1 participant0 posts today
Belle (she/her)<p>Alright <a href="https://kind.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllness</span></a> and <a href="https://kind.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISvoid</span></a> friends. It is time. <br>Please hit me with your wheelchair recommendations, avoid list, and things to research. <br>I think I am interested in a manual active chair with a focus on foldable/portability. <br>Feel free to boost.</p>
Naga<p>Severe <a href="https://weirder.earth/tags/PEM" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PEM</span></a> today.</p><p>Wish I'd done something fun to earn it.</p><p><a href="https://weirder.earth/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> <a href="https://weirder.earth/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISvoid</span></a></p>
eladnarra<p>Okay, weird question: does being physically cold make anyone else feel depressed or anxious?</p><p>Sometimes I get super sluggish and feel suddenly depressed, and warming up by sitting outside or taking a shower seems to help. I know both those things can positively impact mood in general, but it feels related to temperature... But not season (it's summer here, I'm just in AC).</p><p><a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a> <a href="https://disabled.social/tags/dysautonomia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>dysautonomia</span></a> <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISvoid</span></a></p>
Irish ME/CFS Association<p>⬆️ Content warning: suicide attempt</p><p>Mary previously said we could describe it as follows:</p><p>A fictionalisation of the struggles of a woman with <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> (ME), and the obstacles she faces on a daily basis as a wheelchair-using mature student.</p><p>In Irish with English subtitles</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span><br><a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>chronicillness</span></a></span><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/spoonies" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>spoonies</span></a></span><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/disability" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>disability</span></a></span><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/disabilityjustice" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>disabilityjustice</span></a></span> <a href="https://mastodon.ie/tags/neisvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>neisvoid</span></a><br><a href="https://mastodon.ie/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillness</span></a> <br><a href="https://mastodon.ie/tags/chroniclife" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chroniclife</span></a> <br><a href="https://mastodon.ie/tags/Spoonielife" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Spoonielife</span></a> <br><a href="https://mastodon.ie/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllnesses</span></a> <br><a href="https://mastodon.ie/tags/Spoonies" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Spoonies</span></a><br><a href="https://mastodon.ie/tags/Spoonie" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Spoonie</span></a><br><a href="https://mastodon.ie/tags/ChronicallyIll" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicallyIll</span></a></p><p><span class="h-card" translate="no"><a href="https://mastodon.ie/@marytynan" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>marytynan</span></a></span></p>
ahimsa<p>One more quote:</p><p>"The sorry saga of ‘The Salt Path’ has been very revealing of our ideas about chronic illness and exercise, and we can only hope that people will be learning from it. The message I want to get across is that exercise is not a panacea for all ills. </p><p>… Just don’t assume that exercise is always good for everyone, or overestimate its ability to heal any ailing body."</p><p><a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllness</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PEM" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PEM</span></a> <a href="https://disabled.social/tags/Disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Disability</span></a> <a href="https://disabled.social/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISVoid</span></a></p>
ahimsa<p>"What does the fallout from the ‘Salt Path’ saga tell us about our society’s ideas about chronic illness and exercise?"</p><p><a href="https://bjgplife.com/what-does-the-fallout-from-the-salt-path-saga-tell-us-about-our-societys-ideas-about-chronic-illness-and-exercise/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bjgplife.com/what-does-the-fal</span><span class="invisible">lout-from-the-salt-path-saga-tell-us-about-our-societys-ideas-about-chronic-illness-and-exercise/</span></a></p><p>"But the problem is that individual stories are taken up and generalised and widely applied beyond where they should be, especially if they appear to confirm pre-existing cultural biases."</p><p>"Our societal bias that exercise can only ever heal, never harm, is incredibly pervasive."</p><p><a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllness</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PEM" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PEM</span></a> <a href="https://disabled.social/tags/Disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Disability</span></a> <a href="https://disabled.social/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISVoid</span></a></p>
Naga<p>Handy wallet card for people with chronic illness. It resonates for me with <a href="https://weirder.earth/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a>, but is hardly limited to that.</p><p><a href="https://weirder.earth/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISVoid</span></a></p><p>(No attribution available -- it's meme-style that my wife clipped for me from Facebook, and has probably long made the rounds in one form or another.)</p>
Tom Kindlon<p>From Jaime Seltzer on the blue site:</p><p>Learned earlier this evening that the <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> Collaborative Research Center at Columbia's funding was restored... it's a huge relief to know that their work will move forward. Congrats to the whole lab! 🧪</p><p><a href="https://disabled.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISvoid</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
NagaChronic illness again, vaguely morbid (again)
NagaChronic illness, shit keeps getting shittier (5/5)
NagaChronic illness, shit keeps getting shittier (4/?)
NagaChronic illness, shit keeps getting shittier (3/n)
NagaChronic illness, shit keeps getting shittier, bodily waste (2/n)
NagaChronic illness, shit keeps getting shittier (1/n)
Rainbow (plural system) 🏳️‍⚧️Selfie, eye contact (supplementary to the main post, which is about a free mobility aid resource in Oregon)
jonny (good kind)Chronic illness things
Anna<p>Well, not the happiest intro but I’ll cut/paste this here while I still remember then add a proper intro spoons allowing..⬇️</p><p>Please <a href="https://zeroes.ca/tags/boost" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>boost</span></a> and share to other platforms spoons allowing.</p><p>Seems I’m desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.</p><p>My story: <a href="https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thecanary.co/global/world-anal</span><span class="invisible">ysis/2024/05/03/me-cfs-anna-australia/</span></a></p><p>More info on how to help:: <a href="https://buymeacoffee.com/halcionandon/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="">buymeacoffee.com/halcionandon/</span><span class="invisible"></span></a><br>Beem: Halcionandon</p><p>I’ve tried every level of government and they simply won’t help. <br>- Please ask people if they have a spare room or somewhere to go. Maybe you have somewhere? <br>- Is anybody a <a href="https://zeroes.ca/tags/DisabilityAdvocate" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>DisabilityAdvocate</span></a>? <a href="https://zeroes.ca/tags/SocialWorker" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SocialWorker</span></a>? Need help.</p><p>Please don’t give me contacts for domestic violence orgs. They don’t help disabled people with housing &amp; only offer counselling. Also, that list of disability advocates going around for <a href="https://zeroes.ca/tags/Melbourne" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Melbourne</span></a> <a href="https://zeroes.ca/tags/Australia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Australia</span></a> (where I am) is outdated - there aren’t any in my catchment. So I’m looking for volunteers with some background.</p><p>Thanks for reading</p><p><a href="https://zeroes.ca/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://zeroes.ca/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://zeroes.ca/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> <a href="https://zeroes.ca/tags/Hypothyroidism" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Hypothyroidism</span></a> <a href="https://zeroes.ca/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllness</span></a> <a href="https://zeroes.ca/tags/Neisvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Neisvoid</span></a> <a href="https://zeroes.ca/tags/NacissisticAbuse" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NacissisticAbuse</span></a> #<a href="https://zeroes.ca/tags/Housing" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Housing</span></a> <a href="https://zeroes.ca/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Dysautonomia</span></a> <a href="https://zeroes.ca/tags/SocialWork" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SocialWork</span></a> <a href="https://zeroes.ca/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MedMastodon</span></a> <a href="https://zeroes.ca/tags/PWLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PWLC</span></a> <a href="https://zeroes.ca/tags/MutualAid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MutualAid</span></a> <br><a href="https://zeroes.ca/tags/HumanRights" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>HumanRights</span></a> <a href="https://zeroes.ca/tags/Press" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Press</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" target="_blank">@<span>mecfs</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>chronicillness</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/neisvoid" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>neisvoid</span></a></span> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/disability" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>disability</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/disabilityjustice" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>disabilityjustice</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/socialwork" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>socialwork</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mutualaid" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mutualaid</span></a></span> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>chronicillness</span></a></span></p>
Belle (she/her)<p>Nobody tells you how quickly being in pain gets boring. Like oh, excruciating pain again? We did that yesterday, could you come up with something different? I’ve got plans. <br><a href="https://kind.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISvoid</span></a> <a href="https://kind.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicPain</span></a></p>
Belle (she/her)<p>Me every month: oh cool, I think this month my sciatica isn’t as bad, maybe the birth control is finally helping.<br>Also me every month the next day: FUCK, never mind!<br><a href="https://kind.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISvoid</span></a> <a href="https://kind.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicPain</span></a></p>
NagaMorbid, personal, -health, somewhat gross
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