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#spoonies

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Aurora<p>Frage an fellow <a href="https://zirk.us/tags/Spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonies</span></a> und andere chronisch kranke und/oder behinderte Menschen.</p><p>Vernissage aber so barrierefrei wie möglich, beste Uhrzeit, damit man noch Löffel, wenig Schmerzen oder Medi-Nebenwirkungen, Kraft etc. hat.</p><p><a href="https://zirk.us/tags/Vernissage" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Vernissage</span></a> <a href="https://zirk.us/tags/ChronischeErkrankung" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronischeErkrankung</span></a> <a href="https://zirk.us/tags/BarrierefreiheitIstMehrAlsEineRampe" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>BarrierefreiheitIstMehrAlsEineRampe</span></a></p>
Sp4rkR4t :yes_scotland:<p>My daughter has a <a href="https://mastodon.scot/tags/wordpress" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>wordpress</span></a> site to act as her art <a href="https://mastodon.scot/tags/portfolio" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>portfolio</span></a> and prints shop through <a href="https://mastodon.scot/tags/printify" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>printify</span></a>. This is a bit heavy &amp; slow way to do things but I wasn't well enough to build her anything custom.<br>I'm now a bit better at my <a href="https://mastodon.scot/tags/pacing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pacing</span></a> so was thinking about building her a new static site that plugs into her printify shop.<br>Anyone have ideas about what toolkits have wordpress import, handle image compression well and integrate with printify? <a href="https://mastodon.scot/tags/webdev" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>webdev</span></a> <a href="https://mastodon.scot/tags/spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonies</span></a> <a href="https://mastodon.scot/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
Tom Kindlon<p>(US) Telehealth Update</p><p>Image from Massachusetts ME/CFS &amp; FM Association March 2025 e-newsletter:<br><a href="https://massmecfs.org/newsletters/919-2025-03-march-newsletter" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">massmecfs.org/newsletters/919-</span><span class="invisible">2025-03-march-newsletter</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener noreferrer" 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 noreferrer" 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 noreferrer" target="_blank">@<span>disability</span></a></span><br><a href="https://disabled.social/tags/neisvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>neisvoid</span></a><br><a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <br><a href="https://disabled.social/tags/chroniclife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chroniclife</span></a> <br><a href="https://disabled.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicPain</span></a> <br><a href="https://disabled.social/tags/Spoonielife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonielife</span></a> <br><a href="https://disabled.social/tags/hiddenillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hiddenillness</span></a> <br><a href="https://disabled.social/tags/invisibleillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>invisibleillness</span></a> <br><a href="https://disabled.social/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllnesses</span></a> <br><a href="https://disabled.social/tags/Spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonies</span></a><br><a href="https://disabled.social/tags/Spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonie</span></a><br><a href="https://disabled.social/tags/ChronicallyIll" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicallyIll</span></a><br><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> <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/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <br><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></p>
Tom Kindlon<p>🧵 <br>"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical &amp; mental wellbeing, study finds"</p><p><a href="https://www.eurekalert.org/news-releases/1074887" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">eurekalert.org/news-releases/1</span><span class="invisible">074887</span></a></p><p>Research on people with autoimmune diseases but people with other conditions will sadly be able to relate</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener noreferrer" 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 noreferrer" target="_blank">@<span>spoonies</span></a></span><br><a href="https://disabled.social/tags/neisvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>neisvoid</span></a><br><a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <br><a href="https://disabled.social/tags/chroniclife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chroniclife</span></a> <br><a href="https://disabled.social/tags/hiddenillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hiddenillness</span></a> <br><a href="https://disabled.social/tags/invisibleillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>invisibleillness</span></a> <br><a href="https://disabled.social/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllnesses</span></a> <br><a href="https://disabled.social/tags/Spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonies</span></a><br><a href="https://disabled.social/tags/Spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonie</span></a><br><a href="https://disabled.social/tags/ChronicallyIll" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicallyIll</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/lupus" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>lupus</span></a></span> <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><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> <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> <br>1/</p>
Heather :chickadee:<p>I've been feeling really crummy the last few days, so here's a solidarity selfie with other <a href="https://comicscamp.club/tags/spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonies</span></a> having trouble. Lots of love, everyone. You're not alone. :hearthands: </p><p>[Marked sensitive for eye contact.]</p><p><a href="https://comicscamp.club/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NEISvoid</span></a> <a href="https://comicscamp.club/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllness</span></a> <a href="https://comicscamp.club/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p>
Tom Kindlon<p>Support Group Recap: Self-Compassion Amidst Chronic Illness February 11, 2025<br><a href="https://batemanhornecenter.org/wp-content/uploads/2025/02/20250211-Support-Group-Recap.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">batemanhornecenter.org/wp-cont</span><span class="invisible">ent/uploads/2025/02/20250211-Support-Group-Recap.pdf</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener noreferrer" 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 noreferrer" target="_blank">@<span>spoonies</span></a></span><br><a href="https://disabled.social/tags/neisvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>neisvoid</span></a><br><a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <br><a href="https://disabled.social/tags/chroniclife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chroniclife</span></a> <br><a href="https://disabled.social/tags/Spoonielife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonielife</span></a> <br><a href="https://disabled.social/tags/hiddenillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hiddenillness</span></a> <br><a href="https://disabled.social/tags/invisibleillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>invisibleillness</span></a> <br><a href="https://disabled.social/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllnesses</span></a> <br><a href="https://disabled.social/tags/Spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonies</span></a><br><a href="https://disabled.social/tags/Spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonie</span></a><br><a href="https://disabled.social/tags/ChronicallyIll" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicallyIll</span></a><br><a href="https://disabled.social/tags/ChronicIllnessMemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllnessMemes</span></a><br><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> <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> <a href="https://disabled.social/tags/Migraine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Migraine</span></a> <a href="https://disabled.social/tags/migraines" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>migraines</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/migrainechatgroup" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>migrainechatgroup</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/migrainechat" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>migrainechat</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>
Valerie Roney<p>☝️also, there literally is no law saying you can't vote in your pyjamas. <br><a href="https://disabled.social/tags/spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonies</span></a> <a href="https://disabled.social/tags/democracy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>democracy</span></a> <a href="https://disabled.social/tags/vote" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>vote</span></a> <a href="https://disabled.social/tags/ontarioElection" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ontarioElection</span></a> <a href="https://disabled.social/tags/ONpoli" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ONpoli</span></a></p>
Tom Kindlon<p>"Support Group Recap: Using Boundaries to Improve the Illness Experience" (January 21, 2025)</p><p><a href="https://batemanhornecenter.org/wp-content/uploads/2025/01/20241221-Support-Group-Recap.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">batemanhornecenter.org/wp-cont</span><span class="invisible">ent/uploads/2025/01/20241221-Support-Group-Recap.pdf</span></a></p><p>Hashtags:<br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener noreferrer" 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 noreferrer" target="_blank">@<span>spoonies</span></a></span> <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> <br><a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <br><a href="https://disabled.social/tags/chroniclife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chroniclife</span></a> <br><a href="https://disabled.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicPain</span></a> <br><a href="https://disabled.social/tags/Spoonielife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonielife</span></a> <br><a href="https://disabled.social/tags/hiddenillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hiddenillness</span></a> <br><a href="https://disabled.social/tags/invisibleillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>invisibleillness</span></a> <br><a href="https://disabled.social/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllnesses</span></a> <br><a href="https://disabled.social/tags/Spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonies</span></a><br><a href="https://disabled.social/tags/Spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonie</span></a><br><a href="https://disabled.social/tags/ChronicallyIll" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicallyIll</span></a></p>
Kymberly<p>My first ever darn-as-if-it-is-knitted is done (where both fingers are). Not perfect with the ridiculously high pain levels today, but should be wearable.</p><p>Now to keep knitting and finish this beast - never use a fine yarn for your first knitted garment. </p><p>Further updates on other projects will be up for patrons soon. </p><p><a href="https://old.mermaid.town/tags/knitting" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>knitting</span></a> <a href="https://old.mermaid.town/tags/The100DayProject" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>The100DayProject</span></a> <a href="https://old.mermaid.town/tags/spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonies</span></a></p>
🔥Cassandra🔥<p>Maybe for <a href="https://ottawa.place/tags/spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonies</span></a> specifically?</p><p>Two weeks ago, I had a very busy day that caused my body harm.</p><p>I was out of my apartment for six hours, which is unusual for me. I had a high-stress appointment and walked over 10 km and did an hour of yoga and barely ate anything.</p><p>I was taught to push through using my body's reserves: work first, eat later (/never). This is unhealthy, I know, especially when my reserves are already so low.</p><p>Symptoms I noticed on that day included being freezing and being clumsy. Since then, I've noticed in particular my hair thinning.</p><p>What I'm wondering is if I could *still* be recovering from that very bad day, two weeks later. Is it naive to believe recovery is even possible?</p>
Tom Kindlon<p>5/</p><p>Table 1. Never-words, their impact, and suggested alternatives</p><p>from</p><p>Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders</p><p><a href="https://www.mdpi.com/1660-4601/22/2/275" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">mdpi.com/1660-4601/22/2/275</span><span class="invisible"></span></a></p><p><a href="https://disabled.social/tags/neisvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>neisvoid</span></a><br><a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <br><a href="https://disabled.social/tags/chroniclife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chroniclife</span></a> <br><a href="https://disabled.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicPain</span></a> <br><a href="https://disabled.social/tags/Spoonielife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonielife</span></a> <br><a href="https://disabled.social/tags/hiddenillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hiddenillness</span></a> <br><a href="https://disabled.social/tags/invisibleillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>invisibleillness</span></a> <br><a href="https://disabled.social/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllnesses</span></a> <br><a href="https://disabled.social/tags/Spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonies</span></a><br><a href="https://disabled.social/tags/Spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonie</span></a><br><a href="https://disabled.social/tags/ChronicallyIll" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicallyIll</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> <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> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>chronicillness</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/spoonies" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>spoonies</span></a></span></p>
Book<p>I love seeing value-neutral disability in popular media.</p><p>We don't want to be pitied. We just want to be accommodated. </p><p>The disabled don't want platitudes. We want to live as well as we can: As well as you can.</p><p><a href="https://beige.party/tags/manga" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>manga</span></a> <a href="https://beige.party/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://beige.party/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllness</span></a> <a href="https://beige.party/tags/spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonies</span></a></p>
Continued thread
Public
Tom Kindlon

2/

Table 1. Never-words, their impact, and suggested alternatives

from

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

mdpi.com/1660-4601/22/2/275

#LongCovid #MEcfs @mecfs @longcovid @chronicillness
@spoonies
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

Table 1. Never-words, their impact, and suggested alternatives. Never-Words Explanation and Impact Alternative “You don’t look sick”. Many patients may appear healthy, but feel very sick with various symptoms, including fatigue and pain. Please refrain from commenting on their appearance. “You need to stay positive”. Saying this to patients with debilitating symptoms with limited treatment implies that the patient did not stay positive or that the patient’s attitude is to blame for feeling or staying sick. “I know it can feel discouraging to feel so sick, and especially for so long. We will work on this together”. “At least it’s not cancer”. Minimizing symptoms and disabilities is not well-received by patients who are suffering with non-terminal, but debilitating, and disabling conditions. Comparing diseases to make a patient feel better is a strategy that is best avoided, since it usually has the opposite impact.
Public
Tom Kindlon

From Australia:

‘Devastating’: Australians lift lid on life-threatening national medical crisis

Zoe Simmons writes of her own and others' experiences with ME/CFS & medical gaslighting. "This dismissal isn’t just devastating. It can cause long-term health impacts when symptoms are ignored & conditions go untreated."

news.com.au/lifestyle/health/h

#MEcfs #CFS #gaslighting @mecfs #medicalgaslighting #chronicillness @chronicillness #spoonie #spoonies @spoonies

Public
Tom Kindlon

This is in the US. It would be great if it was available in other countries too as means testing of payments mean many people with chronic illnesses and disabilities really struggle financially.

ablenrc.org/what-is-able/what-

#disability @disability #chronicillness @chronicillness @spoonies #spoonie #spoonies #mecfs @mecfs

ABLE National Resource CenterWhat are ABLE Accounts? - ABLE National Resource CenterAbout ABLE Accounts An ABLE account is a savings and / or investment option for people with disabilities who qualify. It falls under Section 529A of the Internal Revenue Service tax code. The ABLE Act allows a person whose disability began before age 26*, to save money in the ABLE account without affecting most federally funded benefits based on need. The money in the account may be used to pay for qualified disability expenses (QDEs). Any growth in the account from investments is not taxed and does not count as income if the funds are used for QDEs. View a...Read More »
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Valerie Roney

Ok, last lil toot before I got nap:

We've just been discussing how rest is a skill, and different than doing nothing, and often hard to allow ourselves to do and whatnot.

So for some peer mentoring / idea sharing / rest celebrating I propose a #restMode tag (I have apparently been using a bit already).

Use it to share your moments of rest, your strategies of rest, the ways you are resting, and lurk for new ideas and framing.

#spoonies#longCovid#burnout
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