Beth Morton | MigraineChat
Brianneplz RT!
in light of [everything], shall we do a little #NEISVoid intro thread?
if you’re looking for more chronically ill / disabled mutuals, reply here with a short intro & maybe let us know who you want to chat with!
Amiee@bennessb glad to see familiar faces here. I'm in Northern CA and have multiple autoimmune disorders and ME/CFS. Suspect hEDS but no official diagnosis. Currently relearning my energy for work schedules and recovery time.
sameerhello!!
my name is samir and I am a disabled transmasc creative and zine maker. I am currently in music school and am interested in adaptive music lessons and devices.
I am a migraineur and neurodivergent (dyspraxic, adhd, autistic)! Would love to connect with any other disabled/chronically ill folk, especially those interested in music!
SmudgiesMom
Jan Droid@smudgiesmom @bennessb hi! hEDS and MCAS etc here. So glad to find the void again.
I'm probably going to bring OhTWIST over here too, shortly.
shannon harvey@bennessb 👋🏻 I’m on Gadigal land in “Australia”, keen to connect with folks with #IBD #UlcerativeColitis and HSD/hEDS. It’s been 3yrs since my IBD diagnosis and still searching for an effective drug that is doesn’t give me weird side effects, always helps to come to the #NEISVoid community.
Hannah@bennessb hi everyone! I’m Hannah.. I’ve been ill for four years now, ME (and endometriosis). I’m an artist and love gaming and reading too.. Would love to follow people with similar interests + ME.
Mermaid HairHi Hannah 👋
I have ME along with a few other connected issues, and I've hopped over here from twitter to find some community as well
I'm Kim btw.
alisonborealisHello! I'm alison, a migraine and IIH -haver (looking forward to celebrating rare diseases day with you all!) who's currently in an extended migraine-exhaustion haze thanks to my intense sensitivity to weather systems and changes in air pressure - la niña is a beast!
I'm here for discussing and boosting accessibility, equity, and disability rights... And pushing for greater support and disability literacy amongst medical and policy decisions, like Canada's MAiD fustercluck.
@bennessb
P.S. thanks for doing this, Brianne!
P.S. thanks for doing this, Brianne!
Paul-Gabriel Wiener@bennessb Good idea! I've been missing the disabled community here. #SpoonieChat and all those friends.
I've got a couple of pinned posts, but I'm still not sure how to introduce myself.
In the #NEISvoid context, I've been coping with fibromyalgia, chronic fatigue, sleep apnea, and some other autoimmune since my early teens 30ish years ago. I try to make the most of what's going right, but these days I'm short on spoons and hope. Still, supporting others and being heard means a lot.
Hulk Smash COVID@WearsHats @bennessb I feel ya. Also have struggled with autoimmune issues-- pretty much my whole life-- but in my late 20s is when it really kicked up. It's so hard to know how you're gonna feel, or make plans. I've been trying to stay y connected to my body more instead of ignoring it... Trying to listen to it, but it's tough bc I want to do stuff! ...Mind-body wars..
Roquentin
Persephone@cultofmany I'm in Massachusetts also. Since the weather turned in early November, I've felt like a whole different person. I really get why people become snowbirds to escape the winter.
Englien@bennessb Hi! I’m in the US, and I have a lot going on. Just diagnosed with Adrenal insufficiency, which has been quite difficult to cope with.
I have a lot of autoimmune issues: lupus, type 1 Diabetes, RA, Hashimoto’s, and more.
I also have chronic pain from some spinal issues that has left me in constant pain for over 20 years. Add in migraines, exhaustion that never goes away, and neuropathy in my legs and hands.
Whew! I feel 100 sometimes.
jtonline@heather_RN @bennessb sorry to hear you've added Adrenal insufficiency to your list of issues. Hope you've got it under control now.
@heather_RN @bennessb hopefully there's good support in the US. The #AddisonsDisease Self-Help Group have been brilliant in the UK.
https://www.addisonsdisease.org.uk/
https://www.addisonsdisease.org.uk/
Nikki S@bennessb Hi! I live in Vancouver,BC and am coming up on 3 years with Long Covid. I’ve also been diagnosed with POTS and suspected ME. Mostly housebound so I watch a lot of TV (I’m lucky my energy envelope allows this) and read books. Happy to reconnect with this community again as they were instrumental in helping me when I was first got sick.
@NikkiCutes I grew up just south of you in Washington!
Going on 3 years for me, too, regarding LC. Only figured it out recently, though, because I blamed my symptoms on another condition (suspected RA) until I figured out that most of them only came after the virus. So in some sense it's kind of new for me.
Jess the Dessert Geek@NikkiCutes Vancouver is awesome and I miss BETA5 with a PASSION so I hope you can get some of their treats for the best home reading days! (Seattle is so close, and yet, so far for the chocolate.)
@DessertGeek I’ve never heard of Beta5 before. I’ve got a severe nut allergy so my options for sweet treats are very limited. I will def send my non allergy chocolate loving related there though, they look amazing!
@NikkiCutes Which totally fair! Nut allergies are no joke, and I totally understand.
(Though have you talked to Kasama Chocolate over on Granville then? I'm pretty sure they're nut free, and they're all such nice folks!)
@DessertGeek I haven’t. I will have to look into them!
@NikkiCutes Have fun! They have some intense chocolate flavors, like strawberry and durian! But since they're on Granville Island proper I'd be curious about how they prevent cross-contamination for sure.
Noa@bennessb hi!
I have dysautonomia, specifically IST but I may also have POTS (my next appt is in A YEAR so who knows?). I’m also being tested for lupus among other things. I deal with severe cold urticaria.
I also have chronic pain. I was recently diagnosed with arthritis in my lumbar/coccyx spine area.
I’m queer and nonbinary. I use they/them. I’m Jewish. I’m probably an Angela Chase.
I’m a writer and I love movies, music, and video games. I have three rescue cats. I LOVE Buffy.
Siyeh@noagrey
Oh hi new pal!
Oh hi new pal!
@pandemoniumcrutch well hello!
Jill duh@bennessb
Hey, ME/CFS, Epstein Barr, cervical &L spine garbage, neurological stuff, neuropathy, autoimmune stuff sorry brain is not cooperating
Why is everything broken?
Thank you for the thread and community
Jill of the Duh in so Cal
Helen Metcalfe (she/her)@bennessb hi 🙋🏻♀️ I'm Helen, a scientist with ME/CFS, I'd love to build more community here and I'd be particularly interested in other spoonies trying to navigate the world of academia and/or science
@hmetcalfe I wish I could be in academia. That's my happy zone. I'm just an armchair scholar these days, but I love to follow people like you who post about their work.
@nicedragon that was me for a while, slowly built back up to work, but do it all from home. It's certainly nice to follow what others are doing on here when there's no chance to meet in person.
Alex BThanks for doing this, @bennessb!
👋 Hi all! I’m Alex, a chronically ill and disabled graphic designer living in southeastern Michigan. I have EDS, POTS, suspected MCAS, PTSD and ADHD. I have moderate to severe neuropathic pain, chronic musculoskeletal pain and migraines.
I’m interested in disability advocacy, accessible design, and I want to learn all the things.
Bendy~HEDS & Co 🥄👩🏻🦼😷@bennessb
👋What's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISVoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx
👋What's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISVoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx
RANTO Rantogethernow
Christine Sykes@bendyhedsandcoawareness @bennessb Thanks for posting. Raising awareness for lesser-known conditions like EDS is important.
siren ⟡@bennessb Hi, I’m Siren! I’ve been intermittently active on mastodon for about 2 years and am excited about the start of a #NEISvoid community here.
I have #hEDS, #POTS, #MECFS and suspected #MCAS. Been too sick to work or study for soon 3 years and am mostly housebound.
I spend my time on music, podcasts, tv series, fashion and crafts. I like talking about politics, sociology and psychology. Also very fascinated about the human body and like learning about it, including my own conditions.
Looking forward to see you all around! 
LeicesterFox 🦊@bennessb Hey there! I’m new to the community as I was hit by a virus in London on the weekend of the Queens funeral (we just happened to be there) and that has triggered something horrible. We are working on a theory of RA the moment but my mobility has been severely reduced and I’ve now got a second hand mobility scooter for pottering around when I feel up to getting out!
@bennessb I spend a lot of time #reading and #knitting or #crocheting as the pain in my hands allows. I have 4 children, 2 dogs and 2 very disdainful cats :) I live in Wiltshire in the #UK
Teagan Buckley@bennessb hi I'm an artist with a disability (CP) enjoying being *a little* silly and vibing on here. Movie fan with an education in film, doodler and animation and odd music fan.
Domando Al Lobo 🐺@bennessb maybe I don't know your faces but I know #NEISvoid 😊 My nickname is 'Taming the wolf' (Lupus). I'll write my diseases in Spanish, sorry 🙏 #Lupus Sistémico, #EncefalomielitisMialgica, #fibromialgia, #Sjögrens, #POTS, #raynauds, #migrañas,... and +. Disable, homebound, bedbound. #brainfog makes difficult to continue with my blog and team projects but trying my best. Likes: awareness, built support communities. Dislikes: rude people, just complaning (take action). Big hugs
spark@bennessb Hello Brianne & #NEISvoid! 👋🏻 I'm Leah, and I've been living with POTS and a good few GI and autoimmune comorbidities for over a decade. I'm not well enough to work and mostly bedbound.
I love to chat about tips, tricks, symptoms, research, and disability justice. Otherwise, I post about my hobbies! I just love learning and so am interested in most things. I read a lot. And I try to stay in touch with nature in small ways, like houseplants & bird cams. Nice to meet y'all.
sophygurl
dynamicallydisabled@bennessb hi! I'm Em, I'm a disabled nonbinary person living on unceded Abenaki land. I'm studying public health and medicine and health equity stuff. I'm autistic and have EDS&co (POTS, tethered cord, migraine, cervical instability etc etc) and potential long covid. I'm interested in anything health equity, history of medicine/science, communication rights...basically anything disability justice, neurodiversity, intersectionality. I love new friends! Tell me about your interests!
Esther (she/zhe) ♿️@bennessb Hi y'all and thanks for doing this, Brienne!
I'm Esther, and I'm here with ME/CFS, POTS, a rare genetic bone disease, a host of GI issues, neurodivergence, and more.
In addition to being disabled, I'm queer and genderfluid. I wear a lot of creative hats and dabble in the worlds of spirituality, meaning-making, podcasting, tabletop RPGs, and game design. Excited to meet more folks here!
Hospital Mom@bennessb Hi, all! I’m a Neurodivergent homebound ME/CFS and POTS formal diagnosis seeker with a CHD and medically complex kiddo. I’m a fan of all things cool - music, art, nature, science, books, spirituality, philosophy, poetry. If it’s cool, I can dig it. So glad to see the Void here! Your work has been life changing and I’m so grateful for all of you in this community!
Nos
Jhanne@bennessb
Me Jhanne, elderly, long time sick, last years housebound, not bedbound anymore.
dx ME but B12 deficiency , hypermobility and MCAS explain it better.
have taught myself to knit and crochet and live a solitary life due to...well everything. Hope to be able to read books again, due to side effects of meds more foggy then usual. Hope it'll pass now that I've stopped those pills.
Me Jhanne, elderly, long time sick, last years housebound, not bedbound anymore.
dx ME but B12 deficiency , hypermobility and MCAS explain it better.
have taught myself to knit and crochet and live a solitary life due to...well everything. Hope to be able to read books again, due to side effects of meds more foggy then usual. Hope it'll pass now that I've stopped those pills.
Eaton HamiltonAlways looking for more chronically ill/disabled mutuals.
I'm an author and painter living on the west coast of Canada keeping up with my own personal lockdown.
Kat Strega@bennessb
Hi everyone! I’m Kat (38 she/her) queer, neurodivergent (ADHD, GAD, panic attacks, MDD, PTSD, Insomnia,) chronically ill (MECFS, POTS, MCTD, Migraine, IBS, ILD +) and living off of SSDI- which is a STRUGGLE. Looking for others who are in similar situations and/or need help navigating this chaotic existence. 💜
Hi everyone! I’m Kat (38 she/her) queer, neurodivergent (ADHD, GAD, panic attacks, MDD, PTSD, Insomnia,) chronically ill (MECFS, POTS, MCTD, Migraine, IBS, ILD +) and living off of SSDI- which is a STRUGGLE. Looking for others who are in similar situations and/or need help navigating this chaotic existence. 💜
Ri@spooniestrega Hi Kat, not many spoons right now to write a lot, but it's nice to meet you.
@skippingmoonrocks same here, very nice to meet you! 🥄🥄🥄
@bennessb #NEISvoid well, I'm Ri. Mastodon user since 2019. Main issues are ME/CFS, POTS, Brainfog and Autism, there are a lot of minor/related conditions too, but I lack spoons to name them all.
I blog (when brainfog allows it) about autism and me/cfs in Dutch, I write poetry and fiction on random moments. I am known for reading very many books.
Emily Johnson@bennessb Hey y’all! Chronically ill, disabled, immmunocompromised with EDS, Mito, POTS, MCAS, MECFS, PCOS, clotting issues, spinal issues and more. I’m a mod at disabled.social on here. I have a service animal who’s disabled too. Still over on Twitter with the same handle as this account, emily_rj. Also on the NEISvoid discord. Interests in my bio. Nice to see familiar and new faces.
Miriam@bennessb I followed you on the bird site!
I'm Miriam and I've got rheumatoid arthritis, chronic migraines, IBS, and all the other "fun" stuff that accompanies autoimmune diseases.
Elric Wolfsbruder ✡️♿🇺🇦@bennessb Hi Everyone I'm Elric, I have been dealing with fibro and ME/CFS for over a decade, and thanks to covid POTS. It is day 1041 of longcovid, I miss taste and smell.
Nina Cano@bennessb just be nice to chat with folks that understand the issues of disability and the obstructions we face daily😌❤️
SugarCunt (they)Hello VoidFellows! I'm Sugar, a Disabled/mentally + chronically ill writer, horror enthusiast, tech and game dork, space nerd, eclectic witch, and sex educator/writer/worker living in the PNW.
I've got a party pack of mental illnesses (I write most often about my #BPD & #CPTSD), #fibromyalgia, IBS + GERD, and am working with a professional to dx #MCAS. I'm Autistic and ADHD.
I use a cane and Rollator to help me get around on the reg.