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.

5 years have passed and millions are affected globally All are still waiting for a cure #LongCovidAwarenessDay

Such upsetting news. Ondine worked so hard to fight for all of us. Whenever we crossed paths, she was always such a kind and wonderful person to work with. She was a big voice and an integral part of our community. I admired her greatly, such a strong and articulate woman!

Please can all UK #HCW with #LongCOVID please complete this survey regarding keyworker compensation. Info from this will be shared with #DWP it is is really important that we complete this 🫶 Please share widely surveymonkey.com/r/D3HJH5Z

If anybody else was dropped by Bond Turner last week & hasn't already reached out to me, please can you contact me. I have info & don't want to miss anyone. If you know anyone please send them my way 🫶🙏 #LongCOVID #COVIDIsAirborne #CleanAir #PPE

Just realised that the wall I lean on at hospital appts, where I look out at the city I used to spend all my free time in & grieve = the COVID Memorial Wall. I knew it must be nearby, but I’ve never had the energy or mobility to explore #coviddayofreflection #LongCOVID

Shocked to hear so many healthcare workers having their #LongCovid cases dropped by their legal teams. We hope that these decisions can be appealed or reconsidered & those affected will be properly considered going forward by the appropriate bodies. #keyworkerspetition

I’m so, so sorry. This isn’t ok

Disappointing & hurtful news today RE - Bond Turner solicitors dropping many #HCW cases: If you have been dropped today (or ever) by Bond Turner please share/reply with info e.g. date infection/ job role/ when dropped #LongCOVID #LongCOVIDAHPs #COVIDIsAirborne #COVIDIsNotOver #CleanAir

Well, this was a punch to the gut when it popped up this morning! Sadly, it turned into a never ending nightmare! Just 2 weeks into mydream neurorehab job, I caught #covid & it changed my life. I can't believe it's been 5 years! 💔 #LongCOVID #POTS #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

UK PM Starmer to Zelensky: "You are very, very welcome here in Downing Street. As you heard from the cheers on the street outside, you have full backing across the United Kingdom. We will stand with you and Ukraine for as long as it may take."

Made some Welsh cakes, I'm going to do it every #StDavidsDay in honour of my Grandma 🏴󠁧󠁢󠁷󠁬󠁳󠁿 Burnt a few which didn't make the pic but still taste 👌. First time doing it without Grandma guiding me = not bad Now have migraine so going to 🛌....life #LongCOVID #POTS #Migraine #PwME #MECFS #NEISVoid

Also, my other thought this morning. The new episode is Severance is perfection! It hit me in all the feels 🥹😪💔. One of the best series I've ever watched! I'm obsessed. #Severance

Had a mad start to the day yesterday, woke up with a bee in my room. Think it flew in the day before. Not a great way to wake up when you have #POTS but I've found out that it's a sign of good luck & new beginnings 🙏 (🐝 is free) #LongCOVID #POTS #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

2 years ago I left my neurorehab job..the "memories" on my phone sure sting when life has been ruined by #chronicillness #LongCOVID #POTS #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

Another day, another appt. It's always strange & surreal being a patient in the hospital I've worked at on and off for about 16 years! #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #MECFS #MCAS #TeamClots