I’m in for my 9th Ocrevus infusion and struggling for an original photo. #MSChat #MultipleSclerosis #Ocrevus #Ocreluzimab

Every time we come to Woolacombe I attempt to walk the length of the beach to Putsborough (2 miles). Sometimes I make it, sometimes I have to turn back because of nerve pain. Today I made it. #MSChat

MS-Selfie is a great resource for the MS Community. #MSChat #MultipleSclerosis https://open.substack.com/pub/gavingiovannoni/p/ms-self-management-ms-selfie-microsite?r=p10sv&utm_medium=ios&utm_campaign=post

Hi @Samantha72 That doesn’t sound good. Hope someone can help you. #Lupus #MSChat #MultipleSclerosis #Autoimmune

https://open.substack.com/pub/gavingiovannoni/p/nhs-changes-how-to-access-covid-19?r=p10sv&utm_medium=ios&utm_campaign=post For those in England and Wales the process for accessing covid-19 antivirals is changing. #MSChat

Has anyone got any experience of MS effecting their sight? #MSChat #MultipleSclerosis

For those on #Ocrevus https://open.substack.com/pub/gavingiovannoni/p/should-i-switch-from-ocrelizumab?r=p10sv&utm_medium=ios&utm_campaign=post #mschat #MultipleSclerosis #Ocreluzimab

This is great news. #multiplesclerosis #mschat https://multiplesclerosisnewstoday.com/news-posts/2023/04/10/ebv-vaccine-ebv-001-may-enter-clinical-trial-2024/

Very exhausted & can't manage standing up to cook from scratch. Sticking to microwaved oats & bananas. Had to cancel a sleepover because I don't have the battery juice for it. So heartbreaking to miss out on time with dear friend & her daughter 💔

I'm sad that #MS means cancelling plans with friends.

Iam truly exhausted. It's so not fun.
#MSCHAT #multiplesclerosis

Me everytime #MS says hello 🙈
#MultipleSclerosis
#MSChat
#Spoonies
#CreativeChronicBlocks

Trying to get on an approved treatment 4 MS has been a thoroughly dispiriting affair. Every stage has required chasing the NHS by written letter. Every part of the prep as per the NICE guidelines has had to be suggested by me. Every best practice, from me including pointing out issues surrounding my age ("gosh yes that's a good point, we should do that test).

The fact that everyone I've met employed by the NHS have been lovely does not mitigate the shit show that is our health system

#MSChat

Earnest post, asking if/how mastodon #MS peeps have noticed meditational practices helping #livingwithMS ? Anyone here spiritually practicing Buddhism or any other tradition? Or building their own spiritually unique practice & mythologies?

---

Background:
I'm new here & with MS. Several years of mysterious symptoms that escalated just 4 months ago. Rn only have GP support/access & on a long wait list for Neuro appt for diagnosis process. It's a mind-blowing soul-crushing state of limbo as a lone migrant w no family support.

I first noticed that I would lose balance during Tai chi, veer sideways when taking nature walks in 2019. Now I've stopped doing Tai Chi at the parks & only do restorative yoga in my room. I used to join Sufi chanting/head-banging & whirling but I'm home bound & get dizzy when I try it at home lols

Breathing is my only doorway atm. I'm doing Prayanam & incorporating spiritual elements from my heritage, chanting & having a dialogue w all the elements in me.

Awareness, being Just-Is, having unobstructed flow have helped me to stay sane.. I'm noticing the traffic inside the circuitry and I observe tightness, freezing, woodening, firing & much more.

Being Neurodivergent, I grew up absorbing so much for example a quiet room in a library is noisy to me. I hear & feel a lot. It was the 80s, growing up in the global south, i had no choice but to cultivate some peace in a noisy world. I went within.

Not having medical support, the same practice that helped me cope w cPTSD & Autism is also helping me with MS.

The hardest struggle for me is balancing the philosophical/spiritual aspect that I am not my body when my body really demands my advocacy..

Being mindful & meditative is effortless but the traffic/flow that rushes through my system is heavy & I'm exhausted.

I turn to poetry, philosophy, a confluence of science and Non-Dual spirituality from various traditions in my heritage. Adrienne Maree Brown & the Emergent Strategy movement have fueled me too. Recently found Sophie Strand's work bridging self constructed mythology, philosophy and disability.

I'd love to hear how others are finding practices that helps them face the abyss ✨🕳️

#multiplesclerosis
#mschat
#spoonies
#buddhism #esoteric #mysticism #sufism #spirituality #philosophy #sophiestrand #adriennemareebrown

Look what my children have given me @janestegerlewis #MSChat

@magdelenehall "A life in pieces: I felt like Alice tumbles down the rabbit hole into a strange world where even her body keeps pulling surprises on her. That became a model for me. The question that the caterpillar asked Alice: Who are you? Is also the question I had to repeatedly asked myself..""It isn't a metaphor as my legs refuse to respond to the signals my brain was sending..." "I fell onto the curb, my arms and legs up in the air like Kafka's beetle."

#multiplesclerosis #ms #mschat

Delivery person had to withhold my med order because the system doesn't recognize my foreign photo ID. Luckily, they're a fan of my home country & a sister :solidarity:, said they'll come back around after finishing other orders 🙏🏽

Really hope so, bcos I can't travel to the chemist in this condition.

#bordersarenotreal
#multiplesclerosis
#mschat

@sburall @tal 🙏🏽 Thanks! I just joined Mastodon. Following #MSChat #multiplesclerosis helps build comfort and lessen the grief & fear. Good to know there are great resources in the UK. I'm from Australia & will check out MSAus website & local support group too.

It’s Ocrevus day. I’m snuggled up waiting for my pre meds. There’s a chatty crowd in the infusion centre today, so the time should go quickly. #MSChat #MultipleSclerosis

@OcreJulia great! Nice to have it done. X #MSChat

Home from MRI. Quite like having them really early. Found it much easier to dose. #MSChat

...and I have my driving licence renewed; 3 years this time. 🚗 #mschat #multiplesclerosis