Helen/OT_Skiff @otskiff.bsky.social · 07/08/2026Praying to the migraine God's that this new plan works 🙏 I nearly ended up in A&E yesterday as I've been in agony & finding it difficult to eat/drink. But new meds have arrived. I've been taking rimegepant as a rescue for awhile now. But atogepant is my new preventative 🙏 050
Helen/OT_Skiff @otskiff.bsky.social · 03/08/202628 out of the last 30 days have been migraine attack days (incl today). I'm in migraine hell. Thankfully, today was my long awaited appt with migraine Dr and we have a new management plan in place. Just have to wait a few days for the meds to arrive. Hope that it helps 🙏🙏🙏static.klipy.comLeslie Knope (Amy Poehler): Everything Hurts And I'm DyingAlt: Leslie Knope (Amy Poehler) on Parks & Recreation, saying "Everything Hurts And I'm Dying" 010
Helen/OT_Skiff @otskiff.bsky.social · 19/07/2026Blood results are in, ferritin has shot up but everything else in the panel has ⬇️ I'm still in migraine pain. Over the last 15 days, I've had a migraine on 11 of them 🤯. No wonder I'm exhausted. On top of the resp issues and chest pain and everything else, I'm so fed up 😤static.klipy.comSick DuckAlt: Sick animated duck in bed, puts head under the blue blanket 011
Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026And just like that, everything changes. I think I've been upright for a bit too long because I'm now paying for it with horrendous neck and occipital pain. So, it's back to bed I go, with a heat pad and fingers crossed it takes the edge off 🫠💔 250
Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026Mad weekend plans = blood test ✅️ (left the house for the 1st time in weeks 🥳) I've been able to enjoy a bit of peace in the garden while the noisy neighbours are out🤫🙈 Another beautiful 🦋 paid me a visit, I even had a chat with it, a sign I've been stuck 🏡 too long 😂 050
Helen/OT_Skiff @otskiff.bsky.social · 10/07/2026Yesterday I felt sick all day because of a migraine from hell. Thankfully, that attack is over. But today I'm feeling incredibly nauseous, I'm assuming due to the heat 🤢 as it happened a few weeks ago when it was hot too. (No advice please, just moaning)static.klipy.comMax Greenfield (Schmidt) Dry HeavingAlt: Max Greenfield (Schmidt, New Girl), white man with dark hair Dry Heaving, putting his hand to his mouth as if he is about to be sick 000
Helen/OT_Skiff @otskiff.bsky.social · 10/07/2026Blobs/haemoptysis update - I have a plan. The antibiotics havent worked. Agreed with consultant that we'll watch & wait for a few more weeks/month & if still ongoing then a bronch (again, had one last year). If anything drastically worsens then bronch will be sooner.static.klipy.comAnnie Murphy (Alexis Rose): I've Done It BeforeAlt: Alexis from Schitt's Creek with long golden brown hair, wearing a denim jacket, smiling saying "Ive done it before and I can do it again". 000
Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026Well, I must admit, after working in a cardiothoracic transplant centre for 11 years, this result popping up over the weekend gave me a bit of a jumpscare! 😱 110
Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026A beautiful garden visitor today. Thank you for brightening up my day 🦋💜🫶 121
Helen/OT_Skiff @otskiff.bsky.social · 30/06/2026Mission accomplished! 🫡🧫 Today's mission was to hand in my sputum sample and it's officially done! Now the waiting begins. I'm really intrigued to see what the results show and hopefully, they'll finally give us some answers🤞 100
Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026Resp update - so yday was pretty awful, to be honest! 🥵🥴🤢 This heat is not agreeing with me at all & each day seems worse than the last. I've been feeling incredibly nauseous, finding it difficult to eat and drink 🤢 and also very woozy. 100
Helen/OT_Skiff @otskiff.bsky.social · 05/06/20266 years in and I'm still developing new symptoms. Over the last few weeks I've developed restless legs, except it's actually my whole body, not my legs. Because apparently sleep just wasn't difficult enough already 🙃😴 #LongCovid #PwME #POTS #MCAS #Migrainestatic.klipy.comSchitt's Creek: David Rose's 'Lucky Me'Alt: David Rose from Schitt's Creek a tall man with dark hair wearing a black jumper with 2 dogs on it saying "oh lucky me" sarcastically 170
Helen/OT_Skiff @otskiff.bsky.social · 13/05/2026Feeling wiped atm (more than usual)😴. The coughing up bloody blobs is beciming more frequent pretty much daily now. I've been in touch with resp team, Dr replied within 2 mins and I've received an appt for 6 weeks time 📅 #LongCovid #POTS #MCAS #TeamClots #Migraine 220
Helen/OT_Skiff @otskiff.bsky.social · 22/04/2026Coughed up another bloody blob today = 2 in 4 days 💔 I actually predicted it yesterday because the chest pain was so bad. Same symptoms, same pattern as last year, think it might be happening again 🫠🫁😭 #LongCovid #POTS #PwME #MCAS #Migraine #TeamClotsmedia.tenor.coma man from schitt 's creek says " i 'm feeling this "Alt: David from Schitt's Creek (a tall man with dark hair wearing a grey and black jumper) standing in a shop in front of a white door expressive moving his hands saying "I'm feeling this like deep aching sense of dread" 110
Helen/OT_Skiff @otskiff.bsky.social · 18/04/2026FFS just coughed up a bloody mucusy blob. This happened pretty much weekly for most of last year, had to have a bronch and then CT showed GGO's & mucus plugging. Hope thats not all starting again 💔 really cba, feel like I'm falling apart atm! #LongCovid #TeamClots #POTS #MCAS #PwME 230
Helen/OT_Skiff @otskiff.bsky.social · 18/04/2026I’m just a girl, looking at my HRV and wishing it would go back to green 💚 Since starting ticagrelor it’s been consistently “unbalanced”, likely from the heart rate changes and presyncope. Fatigue and that post-B12 dip/reversing out probably aren’t helping either. 030
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026We need better recognition, better research, and collaboration to move this forward. Patients deserve better. #LongCovid #PwME #MECFS #SafeRehab #TeamClots 0102
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026📣 So please, stop reducing complex, life-changing conditions to: “just deconditioning” It’s inaccurate. And it’s harmful. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1112
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026But we do know this: - Long COVID & ME/CFS are different to deconditioning - PEM is real - The biology is measurable #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1104
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026Big unanswered question: Is poor blood flow causing mitochondrial dysfunction or the other way around? We don’t know yet. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1113
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026Leading to: ⚠️ Poor oxygen & nutrient delivery ⚠️ Poor waste removal = A perfect storm for fatigue and symptom flares. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 192
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026There’s also microvascular dysfunction: - Altered capillaries -Reduced lumen space - Endothelial dysfunction - Basement membrane thickening #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1122
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026At a cellular level: Abnormal mitochondria have been observed in Long COVID & ME/CFS. Energy production is impaired. Fatigue here is biological, not behavioural! #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1145
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026PEM is the key. Symptoms worsen after activity. So pushing exercise without careful, individualised screening & guidance? Can make patients worse 🚫 #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 182
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026Physiology shows: - Impaired oxygen utilisation - Circulatory issues So no, patients aren’t just “out of shape.” Their bodies are struggling at a fundamental level. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1102
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026Muscle findings: ❌ Not typical atrophy ✅ Mitochondrial dysfunction ✅ Fiber-type changes This is not “just being unfit.” #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1102
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026Yes, reduced exercise capacity is seen. But that does not = deconditioning. Same outcome, completely different biology. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 191
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026Patients might “look well” in clinic. That snapshot means nothing. What you don’t see is the crash that comes after. Clinicians must screen for and consider the impact of PEM. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 181
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026Long COVID & ME/CFS are NOT deconditioning. Let’s be very clear about that. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1123
Reposted by Helen/OT_SkiffHelen The OT @helentheot.bsky.social · 17/04/2026Really enjoyed listening to Prof Wust @UofTCOVIDRehab Forum. Thought I'd share some of the key messages 🧵 #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots 1166
Helen/OT_Skiff @otskiff.bsky.social · 12/04/2026B12 update - feeling wiped today & have spots on my face which is a side effect 👌 Also woke with a migraine but that's pretty normal for me. So perhaps the grogginess is migraine but it feels worse than normal. Dr Klein did say worse before better so I'm prepared. But siiiigh.media.tenor.coma close up of a cartoon character with icanhasgif.com at the bottom of the imageAlt: a close up of a cartoon character, Boo from monsters inc. A little girl with dark hair in bunchies looking very sleepy, struggling to keep eyes open 020
Helen/OT_Skiff @otskiff.bsky.social · 11/04/2026First B12 injection done 💉 Was a bit nervous about drawing it up, but it went fine. It stung a bit as I injected, think I went too fast, so lesson learned! No bleeding (win), but fully expecting a bruise as I'm covered in them atm Small wins, but quite proud of this one 💚 #LongCovid 270
Helen/OT_Skiff @otskiff.bsky.social · 10/04/2026Ticagrelor update: HR still a bit low & some lightheadedness, but better than last week, so I’ll persevere. Frustrating after getting it somewhat under control, chronic illness life 🙃 In brighter news, I love looking at this tree 🌸 #LongCovid #POTS #PwME #TeamClots 140
Helen/OT_Skiff @otskiff.bsky.social · 03/04/2026FFS had abdo pain all week put it down to side effect. It seemed to settle yday but worsened overnight. Now have constant raw abdo & back pain, FML ?UTI or ? interstitial cystitis. Or maybe as my ANS has been so affected maybe the nerves are just all inflamed. So done! 🤬 #LongCovid #POTS #TeamClots 100
Helen/OT_Skiff @otskiff.bsky.social · 02/04/2026Tica update - I'm still lightheaded but it isnt as bad as it has been over the last few days. Dr advised I stop & see if things settle. But as there is a little improvement today I'm going to keep going. If it gets severe again I'll stop/tweak meds. #LongCovid #POTS #TeamClots 181
Helen/OT_Skiff @otskiff.bsky.social · 02/04/2026After a pretty 💩 week this made my day today 🥹 A LC friend sent a thank you for helping with the covid inquiry, so sweet! It really is the little things that mean so much 🫶 I've met so many lovely people through this hellish experience! #LongCovid #POTS #TeamClots 090
Helen/OT_Skiff @otskiff.bsky.social · 01/04/2026Another bad day, trying to stay conscious and not pass out even at rest just sitting in bed with feet up, thanks Ticagrelor 👌💔 #LongCovid #POTS #TeamClots 141
Helen/OT_Skiff @otskiff.bsky.social · 31/03/2026So 5 days in to Ticagrelor and it isnt going well. The side effects include dizziness and fainting. I struggle with this every day anyway but this has made it much worse & my legs are shaking everytime I move & I feel faint pretty much constantly. #LongCovid #POTS #TeamClots 131
Helen/OT_Skiff @otskiff.bsky.social · 27/03/2026Goodbye clopi, hello Ticagrelor. Hoping for benefits,minimal side effects & nothing scary! 🙏 #LongCovid #POTS #MCAS #Migraine #TeamClots 130
Helen/OT_Skiff @otskiff.bsky.social · 26/03/2026I'm so excited that I can finally watch The Pitt 🎉 000
Helen/OT_Skiff @otskiff.bsky.social · 25/03/2026Finally, I've had a little energy to look at my @amaticahealth.bsky.social RNA results. And, how validating! It really fits my clinical picture and confirmed my thoughts. After years of "normal" blood tests, nice to have some data to back it up. #LongCovid #POTS #Migraine #PwME #TeamClots 161
Helen/OT_Skiff @otskiff.bsky.social · 24/03/2026💔 Siiiigh! Triple update. So about a month ago I had a blood test to check if I respond to clopi, as quite a few people have a gene that means it doesn’t actually work for them. And of course, I’m one of them 🙄 #LongCovid #POTS #MCAS #PwME #Migraine #TeamClots 110
Helen/OT_Skiff @otskiff.bsky.social · 22/03/20266 years since the Covid infection that turned my life upside down. Woke up feeling fairly okish (for me) but this afternoon I seem to be having the worst POTS episode I've had in awhile, went from lying to sitting and havent felt right since. Feel woozy, clammy and sick. #LongCovid #POTS #PwME 1185
Helen/OT_Skiff @otskiff.bsky.social · 19/03/2026I don't have the energy to write this out again as a 🧵 Please see pics for my thoughts on the module 3 report. I am proud to have been part of the @LC_Physio inquiry team & have mixed feelings about the report. Mainly disappointed but not surprised #LongCovid #CovidInquiry #Covid19 #LongCovidAHPs 0123
Reposted by Helen/OT_SkiffLong Covid UK @longcoviduk.bsky.social · 19/03/2026Six years on, too many people are still without the care and support they need. We are calling for urgent action to address these ongoing failures. Read our full response: www.longcovid.org/impact/news/... 2/2longcovid.orgLong Covid SupportTo learn more visit LongCovid.org 0113
Reposted by Helen/OT_SkiffLong Covid UK @longcoviduk.bsky.social · 19/03/2026Today’s Covid-19 Inquiry Module 3 report laid bare serious failures in healthcare and in the response to Long Covid. #LongCovid #CovidInquiry 1/2 42311
Reposted by Helen/OT_SkiffLong COVID Physio @longcovidphysio.bsky.social · 17/03/2026Here is one of our members, Nicola Ritchie, explaining the impact of living with #LongCovid at the Covid Inquiry Nicola is available to speak with the media after the release of the Module 3 Report on Thursday 257
Reposted by Helen/OT_SkiffLong COVID Physio @longcovidphysio.bsky.social · 17/03/2026Does the CSP @thecsp.bsky.social have any plans to cover the release of the Module 3 report from the Covid Inquiry on Thurs? We would love to have your support @jonryancsp.bsky.social @ashjames10.bsky.social @robyeldham.bsky.social @abihend.bsky.social @tolanahp.bsky.social Press release below 155
Reposted by Helen/OT_SkiffLong COVID Physio @longcovidphysio.bsky.social · 17/03/2026@mrjamesob.bsky.social @lbc.co.uk Are you planning on covering the release of the Module 3 report from the Covid Inquiry? There are at least 2 million people living with LongCovid in the UK. Many of us have lost our jobs and careers in healthcare Please find our press release below👇 195
Reposted by Helen/OT_SkiffLong COVID Physio @longcovidphysio.bsky.social · 15/03/2026Before their Covid infection, our members were free to choose how they used each heartbeat. Now, #LongCovid limits what they can use each beat for. The change from before to after is obvious #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts 2/ 12115