So I come to the hivemind:

do any of you all have any recommendations or favorite things that you have used on your own person to help keep you from accidentally injuring yourself?

Not just hands/fingers/wrists. But also arms/elbows, shoulders, knees and ankles.

#eds #Hypermobility #hsd
3/4

New research from EDS Chiari Center!

#EDS linked to multiple disabling syndromes like Chiari Malformation, Tethered Cord, #POTS and Dysautonomia, Mast Cell Activation Disorder #MCAD, Styloid Hypertrophy, Myalgic Encephalomyelitis-Chronic Fatigue Syndrome #MECFS

https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1484504/full

There's a tracker app designed for people with chronic health problems who'd like help with pacing!

I just heard about it from a blogger I follow on Tumblr, and thought I'd spread the word.

Blog entry: https://thebibliosphere.tumblr.com/post/774126670579908608/visible-activity-tracking-for-illness-not

App website: https://www.makevisible.com/

#chronicIllness #MECFS #fibromyalgia #POTS, #EDS

So! Some things you might hear me talk about here:

#WorldOfWarcraft #TTRPG #FountainPen #Art #ShitpostCalligraphy #History #Nature #Cats (a lot of cats) #Costuming #Sewing #CrossStitch #Cooking (lots of cooking) #Sourdough and other #Bread #Handwriting #Letters #Journaling #ArtJournal #Planner #Hobonichi #Sticker #Stationery #Photography #Pets #Cute #Religion #Druidry #MentalHealth #Disability #EDS #Bipolar

And basically literally anything else. If you're interested in it, I probably am too.

Another batch of birdsite folks, so I'll do #introduction again in case they're looking for their people and I'm their people.

I am a #queer #disabled #SFF #author. She/they.

I speak #English and a little #Español, #ASL, and #Csharp and #python.

I have fairly severe #EhlersDanlos / #EDS, #POTS, #migraines, #ChronicPain.

I am a #socialist organizer with #DemSoc, most interested in #feminism and #MutualAid.

I enjoy #punk, #ska, #FolkPunk, and lately I'm on a #metal kick.

I do #VisualArts, #FiberArts, and #FireSpinning, though these things are somewhat dialed back because my bones suck.

***

I will do my best to post accessibly, including image descriptions and avoiding flashing lights.

I will CW for things like violence, nudity, and hate speech.

I will not CW for cursing, food, politics, or eye contact. If you need CWs for these things, it's okay not to follow me! I just do all of these things a lot, so you wouldn't see most of my posts anyway.

If I see you, and you make interesting original posts, I might follow you. If you post a lot of sexually graphic content, I probably won't. It's not personal.

Hope to see you around

I generally post about #Disability, #MCAS, #EhlersDanlosSyndrome, #EDS, and #Celiac.

Due to EDS, I use a #PowerChair.

I also enjoy #Writing and #Reading. I will occasionally mention when one of my books are free on Amazon. If you need a copy, please let me know.

I am #DeafBlind, and write about #Accessibility.

Things I miss: Gardening, Sewing, Crafting, Crocheting, Cooking, Baking, Knitting, Walking, Hiking, Exploring.

Photos are rare, as words are easier to use to explain concepts.

#IntroPost married. Mixed race blended family with 2 teens still at home. Mixed #EDS types so wheelchair or pure luck and stubbornness getting anywhere. Knit, read, mostly avoid reality TV. Interests include history, engineering and science. I have two border collie puppies named Blue (he's not) and Drake (not a duck either). Pretty random in everything. Feel free to say hi

'Coming Out'​ of the (Multiple #ChronicIllness) Closet : My 'Ensemble Cast'​ of Conditions

(It's a VERY similar closet & settle down, I'm the daughter of 2 Queer mums )

I don't define myself *solely* by my invisible chronic conditions (I'm so much more) but it's a huge part of my life.

How I deal & how it informs life & work

https://www.linkedin.com/feed/update/urn:li:activity:6792528248510275584

#introduction

Hi, I'm Max (he/him)! I'm a #queer #trans #SoftwareDeveloper who mostly does #FrontEnd work but loves the whole stack, and loves #SemanticHTML #CSS and has a lot of experience with a bunch of languages.

I'm also an #ActuallyAutistic #ADHD #TransMan who spends his free time #knitting , #crocheting , #gardening , sometimes a #watercolor #painter . Also a big fan of #DnD .

I am multiply disabled, with #EDS , #MCAS , #POTS , and most recently a dx of Stage 3a #CKD . I talk about my own health stuff and experiences a lot.

come say hi!

Hashtag, cross server intro:

Hi I'm Tuttle. I'm a #nonbinary and #queer #semispeaking #AAC user.

I used to work in #math K-12 education, specifically in actually providing access to education to disabled students. I still care a lot about this but need to participate differently.

My hobbies include #knitting #crochet and other yarn crafts, currently learning #spinning

My interests also include #DisabilityJustice

I am #ActuallyAutistic with chronic #migraine and the #EDS #MCAS #POTS trifecta

hoi, I'm mana!
I noticed that a lot of others are making #introduction posts, so I thought I'd follow suit.

I like cute things, girly fashion/femme aesthetic, video games (mostly #acnh & #ffxiv), anime/manga (#magicalgirls are my favorite), and idols from southeast asia (why yes I am a big #kpop and #jpop nerd).

I like #sewing and #crochet, and am into designing my own clothes. I love anything pastel, girly, glittery, & soft. I also enjoy trying out new #skincare & #makeup products.
I have #rheumatoid_arthritis and I suspect I might have #eds, bc I have a lot of symptoms of hypermobility. Either way I live with #chronicpain & an #invisibleillness.

I spend a lot of my time playing video games & keeping busy with sewing projects when I have the energy, but on bad days I like to lay in bed and read #manga or watch #anime. Some of my favorite manga are #sailormoon, #cardcaptorsakura, #luckystar, #achannel, and #nichijou. As for anime, I really enjoyed #steinsgate, #madokamagica, and #demichan.
On my good days, I tend to game a lot, and that means #ffxiv, though I also enjoy #stardewvalley, #neptunia, and #touhou_project games.

my main interests though, are idols. I started out as a #jpop girl group stan and became interested in #kpop when the hallyu wave really hit in 2011 or so. some of my favorite japanese groups are #helloproject groups, #akb48, #eribon, #nananiji, #dempagumi, #wasuta, and #babymetal.

as for korean groups, I like #wjsn, #kep1er, #loona, #blackpink, #twice, #gidle, and #izone.

if you like asian dramas, comfy anime/manga, kpop/jpop gg, ffxiv, or cozy games, then let's be friends! I'm also on tumblr & am looking to migrate off twitter. ​​

nyaisu to meet you～! ​​