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 · 18/07/2026Highly recommend these Hotteeze ones, they stay warm for ages! Sending healing vibes 🫶 010
Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026I had awful chest and rib pain & a migraine last night, now this. So exhausted from being on pain all the time 💔 010
Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026I'm really hoping this isn't the warning sign of migraine number five this week. I've started noticing that the occipital pain often appears before the migraine itself 🤯 Roll on my headache specialist appointment in a few weeks. I'm really hoping they have some answers and a plan that helps🤞🙏 120
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 · 06/07/2026Sending love and healing vibes to anyone else who feels like they're stuck in an endless cycle of waiting for answers. You're not alone 🫶💚 020
Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026I'm feeling pretty fed up. It feels like all I do is jump through hoops & every time I think I've reached the finish line, someone moves it even further away. 110
Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026Sometimes I wish my body could have one straightforward, obvious problem instead of being so cryptic 🙃 110
Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026I'm feeling really frustrated. This has been going on for 4 years now and has become much worse over the last 2. I'm not particularly worried, and I do understand the clinical reasoning, but I just want an answer. I just want to know what's causing it so we can do something. 110
Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026So, I guess it's a bit of a watch & wait situation while we see how I respond to my current abx, except this bacterium isn't even sensitive to them🤦♀️ Considering I've been coughing up mucus for the last 3 days & finish the abx tomorrow, so they haven't made much difference 🙄 110
Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026I haven't had a proper convo with anyone about it yet, but from the letter, I get the impression my Dr isn't convinced this is what's causing my current mucus/haemoptysis issues. It may simply be colonisation rather than the cause of my symptoms 🤷♀️ 110
Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026This definitely wasn't on my bingo card for my sputum sample result. I had those mixed chronic illness feelings, relief that there might finally be an answer & maybe even treatment for this notoriously difficult to treat pathogen 😬 But nope, as always, it isn't that simple 🙈 120
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 · 02/07/2026So if you don't hear from me for a while, I'm okay, I'm just taking a little break. And if I haven't replied to your message, that's why. Does anyone else reach that stage where absolutely everyone & everything gets on your nerves? Because that's exactly where I'm at today 🙈 010
Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026I'm also trying to be better with my phone because I can tell I'm at that point where I just need a break from the world. The tricky part is that it's hard to switch off when you're waiting to hear from your GP and waiting for hospital test results. 100
Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026I managed to spend an hour or so in the garden this afternoon & was greeted by this beautiful butterfly🦋💜 It genuinely brightened my day when I really needed it. I'm definitely trying to spend a little time in nature each day when I can. 100
Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026The positive is, since the abx, I've definitely been feeling less mucus'y and haven't been coughing up as many blobs, so maybe I really have had a chest infection all this time. I guess the sputum results will reveal all 🦠 100
Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026I've been feeling really down & grumpy today. I don't really know why, probably a combo of things as always: PEM, an uncomfortable interaction that's been playing on my mind, waiting for sputum sample results, grief & just generally feeling v tired & not great ?the antibiotics 100
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 · 30/06/2026It's so hard to know whether it's just my normal symptoms or whether I'm reacting to the antibiotics, so I'm keeping a close eye on things. Fingers crossed it's nothing and they'll do the job 😬🙏 010
Helen/OT_Skiff @otskiff.bsky.social · 30/06/2026With the sample handed in, I started my antibiotics this afternoon. About 20 minutes later I started feeling dizzy and my chest has felt a bit tighter than usual. My mouth also feels like it's burning 😬 100
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 · 26/06/2026For now, I'm lying down with my neck fan on and my Shark fan on and misting and will be here for the forseeable future! Sending cooling vibes to everyone who's struggling in this heat 🫶🧊❄️ 010
Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026It's the garden I jumped out of a plane to help raise money to build when I worked there, long before all this happened and I became a patient myself. It was lovely to see patients enjoying it 💚 100
Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026It's the garden I jumped out of a plane to help raise money to build when I worked there, long before all this happened and I became a patient myself. It was lovely to see patients enjoying it 💚 100
Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026Despite all of that, it was really nice to sit in the shade with my fan in my fave spot while waiting to be picked up. Looking out at the garden brought back lots of memories. 100
Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026I also think it's going to take me a little while to recover from this heatwave and I don't really want to add antibiotic side effects into the mix when they always make me feel worse anyway. 100
Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026I'll be honest, I'm not totally convinced it's an infection, but I guess we have to start somewhere, so we'll see what happens. I'm going to wait until I've done the sputum sample before starting the antibiotics, as that makes the most sense to me. 100
Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026Anyway, the Dr thinks perhaps a chest infection could be causing the blobs. He has prescribed antibiotics and also wants me to do a sputum sample, so I've been given a pot to cough a little gift into and take back for the lab 🙈 100
Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026I somehow made it through the appointment, drenched in sweat and feeling faint. Tbh, I have no idea what I actually said because I felt like I was on a different planet. I was so busy concentrating on not throwing up or passing out that having a conversation was difficult. 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 · 05/06/2026Still in a bit of a flare up. Absolutely wiped atm and I think it's related to whatever is going on with my lungs 🫁 The bloody blobs are still most days and alongside PEM and grief, I guess it's all adding up. So I haven't been online much recently. #LongCovid #PwME #POTS #MCAS #Migraine #TeamClots 030
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 · 13/05/2026Wish it was sooner but I remember when I worked in outpatients their clunic was so overbooked so I understand and have been here before (last year) not particularly worried it's just annoying! #LongCovid #POTS #MCAS #TeamClots #Migraine 200
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 · 18/04/2026Dont worry, it's not my first rodeo. Was an ongoing saga for about 10-11 months last year and wasn't any of those things. Will see if it keeps happening or if it's a one off 010
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