Over the last week or so I’ve been feeling a bit more hopeful 🙏 I’ve been using nurosym all year & think I’ve finally found the right settings for me. I’m not cured, still in bed most of the day but I haven’t been feeling as awful #LongCovid #PwME #MCAS #TeamClots #Migraine

'mRNA vaccines seem to boost the effectiveness of an immune therapy for skin and lung cancer.' @maxkozlov.bsky.social @nature.com 'COVID-19 mRNA vaccine acts like a siren and activates the immune system throughout the body - programming a response to kill the cancer.' www.nature.com/articles/d41...

Today is #PoTSAwarenessDay 💜 I have #PoTS as part of my #LongCovid — and it’s given me my most debilitating symptom: constant lightheadedness & presyncope. For the last 5 years, I’ve felt like I’m going to pass out every time I move. It’s been hellish. 🧵👇

Hospital appointment yesterday. I've thankfully had a quiet appt spell but they're kicking off again. Whilst waiting to be picked up, I took a tiny stroll through The Healing Garden. #LongCovid #PwME #POTS #MCAS #Migraine #TeamClots

Today is #AHPsDay in the UK. I’ll admit, it stung a little when I saw it pop up on my phone. 💔 #LongCovid #LongCovidAHPS

👁 Update: the antibiotic ointment worked really well, my eye’s no longer red or swollen. Still have a small bump (?chalazion) which can take months to go… great! Not painful now, just itchy, like there’s something in my eye. #LongCovid #POTS #PwME #Migraine #TeamClots #MCAS

Just lovely.

A productive but tough appointment yesterday. After years on HRT hoping to reverse any damage from my work acquired COVID infection in 2020, it’s looking like early menopause is more likely. Not confirmed yet, but I think I need to start accepting it #LongCovid #POI #Menopause

Ouch! This arrived today & not sure whether to laugh or cry. I signed up when I turned 30, just 2 months before I became unwell in 2020. I’d planned to travel & go on walking holidays but never got the chance 💔 Grief 😭 #LongCovid #POTS #PwME #MCAS #Migraine #TeamClots

👁 update: ended up speaking to GP yesterday as it got more swollen/red. He was great as always (shout out to my fave GP 🫶). Got antibiotic ointment & strict A&E instructions if it worsens/fever hits 😬🙏 #LongCovid #POTS #ChronicMigraine #MCAS #PwME #TeamClots

Ahhh just what I needed - a stye on my upper eyelid, making my eyelid swollen, painful, and bright red. Perfect. The cherry on top of a great week so far 🫠🙃😴👌 #LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

In other news, yay!..another crash & migraine brewing Pleased I don’t feel as awful now steroids are out my system. Weirdly, even though they totally wiped me out, steroids seemed to help my HRV 🤔 #LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

Yesterday, I had my 2nd blood test of the week 💉 this time for @amaticahealth.bsky.social RNA study It is on it's way 🩸and I hope that there are some clues in there🔎 Thanks @jackamatica.bsky.social for all that you do 👏🫶 #LongCovid #PwME #POTS #ChronicMigraine #MCAS #TeamClots

I’ve written so many positioning guidelines over the years as a neuro OT, yet here I am with a pressure sore/friction blister on my pinky toe from too much bed rest 😭 The OT in me is mortified…the human in me is just 😴 #LongCovid #POTS #MCAS #PwME #ChronicMigraine #TeamClots

Small wins count - no migraines this week thanks to steroids (the only positive side effect!). Sleep is still awful and I can feel one brewing, but I wanted to recognise this rare achievement. #LongCovid #POTS #ChronicMigraine #MCAS #TeamClots #PwME

Day 7 of steroids & still feeling awful, like an absolute zombie! Last dose today, small joy in that 💊 My team won’t extend as there’s been no benefit, so we’ll rethink next steps for 🫁 at clinic in a few weeks #LongCovid #POTS #MCAS #ChronicMigraine #TeamClots #PwME

Still in a crash and steroids have made me feel awful. Total zombie, no energy at all and despite spending all day yesterday trying not to fall asleep....hello steroid insomnia. Day 2 of steroids = not fun. 🙏 it's worth it 🫁 #LongCovid #POTS #MCAS #ChronicMigraine #TeamClots

CT scan gave answers bronch didn’t 🫁 validation = 👏 Starting steroids, nervous given past experience, but 🙏 they’ll ease symptoms & this crash. Lungs have been through a lot with clots, so no wonder they’re inflamed #LongCovid #POTS #MCAS #ChronicMigraine #TeamClots

Day 2000 of #LongCovid for me today. Rather fittingly I've been in severe pain for nearly 2 weeks leading to a crash & I feel awful 💔 #LongCovid #POTS #MCAS #ChronicMigraine #PwME #TeamClots #NEISVoid

After a rough few weeks, my house is finally covid free and I didn't catch it which feels like a huge win 🙌 All of them were positive until day 10. #COVIDisAirborne #covidisnotover #LongCovid #POTS #MCAS #Migraine #TeamClots #PwME

Day 11 of near solitary confinement with covid in the house 😷 I’m the last one standing & feeling pretty fed up with it all & life in general. But then I saw this rainbow 🌈 so beautiful the pic doesn’t do it justice. #LongCovid #POTS #MCAS #PwME #TeamClots #Migraine

Sooo like the last set, botox worked for about a week. Now back to daily migraines....great! I guess they'll stop botox when I speak to the team next month. Soooooo fed up 😡🤯😱 #LongCovid #POTS #MCAS #ChronicMigraine #TeamClots #NEISVoid

When your bestie is getting married in Santorini today and you facetime 🥹😪🥹😪 Absolutely gutted I can't be there to celebrate with her 💔 #LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots #NEISVoid

Still in a crash, it's been over a week now 😴😴😴but looks like HRV is slowly starting to increase. #LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots #NEISVoid

Excited to take part in #OT research exploring real world experiences of people living with #LongCovid. This study uses an activity diary & movement tracker to understand how energy, rest & activity shape daily life. I also had an interview in 2024. Lived experience matters 💚

I'm in a pretty bad "crash" 💔😴 Think it's to do with everything that's going on in my 🫁 . And I had the audacity to do 2 tiny things spread out over 2.5 weeks. I've been in bed all week but HRV just ⬇️🤷‍♀️ #LongCovid #PwME #PESE #POTS #ChronicMigraine #MCAS

Was chuffed today that I manged to watch the cricket 🏴󠁧󠁢󠁥󠁮󠁧󠁿🏏 pretty much all day on/off. I now have awful vertigo...thanks #VestibularMigraine Think the next few days are going to be hideous 😱🥴 #LongCOVID #POTS #PwME #MCAS #Migraine #TeamClots

Weird week this week. - Daily #Migraine - Struggling in heat 🥵 - And it's 5 years since I was sent home from work for the first time after nearly collapsing....can't believe how much worse I am now & how much I've lost since then 💔 #LongCOVID #POTS #PwME #MCAS #Migraine #TeamClots

If you're in the UK, please sign this petition from @ukpots.bsky.social petition.parliament.uk/petitions/70... #POTS #LongCOVID #PwME #MCAS #Migraine

After the week starting off with some not so great encounters with people, my taxi driver surprised me with these yesterday..Faith in humanity restored (a little bit) 💛🫶🌻 #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

I'm wiped after a 7 appt week thankfully only 2 were in person but I'm 😴 & will be in bed for the next week at least. Today was an exhausting but interesting day completing an initial visit as a participant for research investigating dizziness & #vestibularmigraine

A day full of appts and 💩 comments from people. Sometimes I dread appts because I bump into old colleagues & 1. It makes me sad, ahh grief 💔but 2. 1 person will say something ignorant/ableist/💩 #LongCOVID #POTS #ChronicMigraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

Praying that these new meds work as #VestibularMigraine preventative Also hoping for little to no side effects 🙏 Please work 🙏 I realised today that I've only had 3 migraine free days in the last month 🤯😱 #LongCOVID #POTS #ChronicMigraine #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

Day 3 post bronch and GA and on the whole better than expected just very sleepy but that isnt hugely different to my normal. Still have a migraine it's been over a week 💔 #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

I'm alive & survived bronch 🫁today & I'm back home now. Today has involved ticking many things off my I never want this ever list Bronch ✅️ GA ✅️ Theatres/Recovery ✅️ #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

At the end of last year I developed pretty severe vertigo. GP initially thought labyrinthitis but although it calmed down a little, but it didn't go away. I spoke to a different GP and said I thought I had #VestibularMigraine #LongCOVID #POTS #Migraine #PwME #MCAS #TeamClots

Pleased that the paper on #TCM and #Microclots and blood stasis with @resiapretorius.bsky.social preprinted at preprints.org/manuscript/2... has just been accepted for full publication. #TeamClots

A 🧵 on #MedicalGaslighting I received a clinic letter last night stating that my clotting/vascular issues are "unrelated" to #LongCOVID and #COVID_19 infection 😱🙄 #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

Just caught up with ep 2 of #TheLastOfUs and I'm an absolute mess 💔😪

I can confirm that normal service has resumed and I'm on day 2 of migraine....woken up in the same pretty bad level of pain I was in went I went to sleep....👌

Anyone with #LongCOVID has/had recurrent haemoptysis? Not looking for medical advice, I'm well supported & a/w bronchoscopy 🫁 but just wondered if anyone else had had this & what the cause was? (I have many theories 🙈) #LongCOVID #PwLC #TeamClots #NEISVoid

This feels like a huge achievement! I've had a tough, "crashy" week 💔😴🛏 But this just flashed up & yay! Can't remember the last time this happened. Thanks botox & ?LDN 🤔 #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

I was doing a bit better over the last week & now I'm wiped 😴 Is it: -new meds - sodium cromoglicate capsules. Did it make anyone else v drowsy? - ⬇️ in barometric pressure - did I overdo it? Relentless 💔 #LongCOVID #POTS #ChronicMigraine #PwME #MCAS #TeamClots #NEISVoid

Fellow OTs please sign this open letter from the wonderful @AbleOTUK opposing disability benefit cuts 💚 affinot.co.uk/2025/03/21/o... #AbleOTUK #DisabilityRights #CoProductionNow

@longcovidphysio.bsky.social is pleased to support this essential campaign by @longcovidkids.bsky.social Better assessment, care, funding and research are urgently needed for the millions of adults and children living with Long COVID and M.E. #LCandME #FundOurFuture #FundThePlan

Today marks five years since I first got COVID. Five years since my body changed in ways I never could’ve imagined. Five years of surviving what many still don’t understand. #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

Sending solidarity to everyone in a flare today after ⬆️ screen & social media time for #LongCovidAwarenessDay......hello #PESE Well done & thank you to everyone! 🫶🫂 #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

Such a moving start to @longcovidsupport.bsky.social community strategy launch event. I'd like to thank the kind person who made my piece for the banner as I've just been too unwell and had too much going on. Thank you, you're a ⭐️🫶 #LongCovid #LongCovidAwarenessDay #LongCovidAwareness

Today is #LongCovidAwarenessDay and next Saturday that will mark 5 years since I developed covid symptoms and my life completely changed. Thanks for the poster #BerlinBuyers #LongCovid #POTS #MECFS #PwME #ChronicMigraine #VestibularMigraine #POTS #TeamClots #MCAS

🚨 Mythbusting #LongCovid with Dr Amir Khan🚨 Long Covid is real. It’s serious. And it’s affecting millions. On #LongCovidAwarenessDay, #DrAmirKhan joins us to bust harmful myths. Watch, learn, and share—because the more we talk about Long Covid, the harder it is to ignore.