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6 posts6 participants2 posts today

Belle (she/her)New thing to add to the list of shit I’m not allowed to do until my POTS meds kick in: cut a loaf of sourdough. <a href="https://kind.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#POTS</a> <a href="https://kind.social/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISVoid</a>

AnyaMigraine again.Again.Again Again Again.<a href="https://eldritch.cafe/tags/chronicmigraine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicmigraine</a> <a href="https://eldritch.cafe/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a>

AnyaDuring migraine days, or high pain/low energy days, where I'm essentially stuck in bed with very little to occupy me beyond my own lewd thoughts, my YouTube Watch Later playlist has become somewhat of a life saver.My Watch Later hit up to 50+ videos recently.Scrolling my subs and recs feeds, adding videos to the list because they've interested me, but I didn't quite want to watch them right then.I arrange the list by video length (a sorting option I wish they'd add so I didn't have to do it manually).I now only have 4 videos on my list.The silver lining of my inability to leave my bed and/or look at anything brighter than a low-light phone screen, is that I can hit "Play All," flip my phone over so the screen is hidden, and just listen to the videos while I lay in darkness.Just in case anybody wanted a small tip for ways to survive being bed bound for long periods.<a href="https://eldritch.cafe/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a> <a href="https://eldritch.cafe/tags/Spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Spoonie</a> <a href="https://eldritch.cafe/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fibromyalgia</a> <a href="https://eldritch.cafe/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MECFS</a> <a href="https://eldritch.cafe/tags/ChronicMigraine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicMigraine</a>

SingsongRaptorI love having chronic, untreatable vertigo, I love literally not being able to walk straight because I didn't sleep enough combined with incoming rain, this is great, this is perfect, fuck my need to eat or do anything today. And I need FOOD but nobody cares. <a href="https://mastodon.art/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disability</a> <a href="https://mastodon.art/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a>

Goose is eyeballing you<a href="https://spore.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicIllness</a> <a href="https://spore.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a> folx: have you either created or purchased a clothing storage solution that doesn’t require much bending over?There were floor-to-ceiling shelves in the little closet where I last lived, and it was so nice not to bend over too much to obtain the daily necessities. Kept the least needed items closer to floor level. Just pulled out a plastic bin to get what was needed. Can't build-out much in a rental, but would love ideas if you have 'em. Thanks!<a href="https://spore.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a>

Belle (she/her)Second day this week that I’ve woken up before my alarm in awful pain. I think it’s more weather related than anything, but it’s super frustrating. <a href="https://kind.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a> <a href="https://kind.social/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISVoid</a>

genXcrone (she/her)Has anyone done a trauma narrative? What did you think about it? Did you feel like it helped you in any way?My therapist who specializes in trauma and who I've been with for years suggested I think about it. I'm just not sure how I'd do it.I don't feel like I'm no longer traumatized, you know? I am being traumatized daily by [don't want to talk about personal life] so how would I even address that? So in broad terms I'm asking how it went, I guess. Did you like it? <a href="https://fandom.garden/tags/TraumaNarrative" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#TraumaNarrative</a> <a href="https://fandom.garden/tags/MentalHealth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MentalHealth</a> <a href="https://fandom.garden/tags/CPTSD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CPTSD</a> <a href="https://fandom.garden/tags/Trauma" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Trauma</a> <a href="https://fandom.garden/tags/Therapy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Therapy</a> <a href="https://fandom.garden/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISVoid</a>

ahimsa🚨 Call to action! 🚨<a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAction</a> has written a letter to NIH demanding full funding for the ME/CFS Research RoadmapAnd they've asked folks to sign on to this letter:<a href="https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form</a>From the letter: "NIH budget for ME/CFS is $13 million for fiscal year 2024/25– the lowest in comparison to its disease burden of any disease monitored by NIH"Even if you don't sign please boost 🙏Thank you! ❤️<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISVoid</a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicIllness</a> <a href="https://disabled.social/tags/Disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Disability</a>

SingsongRaptorEpiphany hit me last night that I might have hypoparathyroidism. It would explain the worsening of some of my problems (POTs, fibro, muscle spasms & weakness, etc) & why my mouth is so damn dry lately. I need an Endo, just fighting the executive dysfunction to call <a href="https://mastodon.art/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#spoonie</a> <a href="https://mastodon.art/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disability</a> <a href="https://mastodon.art/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a>

John RefiorMay is EDS awareness month in Massachusetts <a href="https://ctdnewengland.org/2024/05/16/proclamation-for-eds-awareness-month-in-ma/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://ctdnewengland.org/2024/05/16/proclamation-for-eds-awareness-month-in-ma/</a><a href="https://hachyderm.io/tags/eds" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#eds</a> <a href="https://hachyderm.io/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISVoid</a> <a href="https://hachyderm.io/tags/hctd" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hctd</a>

SingsongRaptorThyroid ultrasound report came back. Nodule on the remaining thyroid is a little bigger but otherwise everything is unchanged and looks good 😊 <a href="https://mastodon.art/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#spoonie</a> <a href="https://mastodon.art/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disability</a> <a href="https://mastodon.art/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a>

SingsongRaptorTop tier spoonie fashion accessory (no worries, was getting my first follow up ultrasound of my remaining thyroid half since I had the partial thyroidectomy last year. Gotta do it every year)<a href="https://mastodon.art/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#spoonie</a> <a href="https://mastodon.art/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a> <a href="https://mastodon.art/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disability</a>

Bob K Mertz :distressedUS:<a href="https://kind.social/@RavynWitch" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@RavynWitch</a> 🫂 I hate when those days just show up out of nowhere. Hope you have good pain days in the very near future!<a href="https://techhub.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a> <a href="https://techhub.social/tags/hypermobility" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hypermobility</a> <a href="https://techhub.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a>

Belle (she/her)The whiplash of going from several good pain days and the imposter syndrome that comes with it… To a day where everything hurts so bad I can barely walk. Ugh. <a href="https://kind.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a> <a href="https://kind.social/tags/hypermobility" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hypermobility</a> <a href="https://kind.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a>

AnyaThe minor surgery & recovery from the minor surgery have given me a strong reminder of just how high my pain tolerance actually is (alongside a reminder of just how few people either believe me about my chronic pain, or forget about it).Everybody telling me before, during, and since the surgery that I'll have a lot of pain for weeks, that I'll need to take paracetamol to help with it, etc.I won't deny that my toes hurt. But compared to everything else my body is constantly going through? No, I don't need to take paracetamol for them.Then reminding people that the pain in my toes literally isn't registering for me when compared to everything else (unless I focus on whatever my toes are feeling), it's usually met with "Oh yeah" or "Really?"<a href="https://eldritch.cafe/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a> <a href="https://eldritch.cafe/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fibromyalgia</a> <a href="https://eldritch.cafe/tags/Spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Spoonie</a> <a href="https://eldritch.cafe/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a>

Deer Witch Nyx<a href="https://mastodon.online/@catnip" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@catnip</a> echoing what <a href="https://mastodon.art/@secretsloth" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@secretsloth</a> <a href="https://mastodon.art/@RussSharek" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@RussSharek</a> <a href="https://disabled.social/@vlrny" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@vlrny</a> said re: <a href="https://kind.social/tags/lonelinesscorps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#lonelinesscorps</a> !and offering a couple discord options. If anyone wants an invite to either lmk:- the <a href="https://kind.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a> discord is for people with chronic illness/pain - the Long Covid Community discord which was spun-off from the Body Politic slack both have health and non-health interest chat channels, and many community members with ME/CFS and other energy-limiting conditions

Belle (she/her)This is a whole mood this week. <a href="https://kind.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a> <a href="https://kind.social/tags/hypermobility" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hypermobility</a> <a href="https://kind.social/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a>

Ashley HalliwellIf y’all are ever like “Lēna, you’re such a genius”, please note that I just called my spouse panicking about “not having enough hands for this”.The task in question? Replacing the ball on my nose piercing. Surviving a massive stroke ain’t all fun and shitposts. -Allēna #NEISvoid<a rel="nofollow noopener noreferrer" class="hashtag u-tag u-category" href="https://opensorceryy.co/tag/neisvoid/" target="_blank">#NEISvoid</a>

Anya5am.Pain has been flaring all night.Tired, exhausted, but just can't sleep past the pain yet.<a href="https://eldritch.cafe/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fibromyalgia</a> <a href="https://eldritch.cafe/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISvoid</a> <a href="https://eldritch.cafe/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicPain</a>

maloki 🍍:ghostbat:Reminder, your can always stop earlier! The timer is to stop you from overdoing it! <a href="https://rage.love/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NEISVoid</a> <a href="https://rage.love/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MECFS</a>

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