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Helen/OT_Skiff

@otskiff.bsky.social
2K followers 2.9K following 484 posts

Occupational Therapist (neurorehab) on pause due to #LongCOVID, #POTS, #PwME, #ChronicMigraine, #VestibularMigraine #HSD, #MCAS & #TeamClots 🫁 Swiftie 🫶, F1 🏎, cricket 🏏 fan London, UK

PostsRepliesMedia
Helen/OT_Skiff @otskiff.bsky.social · 07/08/2026
Praying 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 🙏
A photo of two migraine medication boxes stacked on a wooden surface. On top is a white and orange box of Aquipta (atogepant) 60 mg, containing 28 tablets for oral use, manufactured by AbbVie. Underneath is a white, teal and purple box of Vydura (rimegepant) 75 mg oral lyophilisates, containing 8 doses. Both boxes have braille on the packaging and are positioned neatly one on top of the other.
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Helen/OT_Skiff @otskiff.bsky.social · 03/08/2026
28 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.com
Leslie Knope (Amy Poehler): Everything Hurts And I'm Dying
Alt: Leslie Knope (Amy Poehler) on Parks & Recreation, saying "Everything Hurts And I'm Dying"
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Helen/OT_Skiff @otskiff.bsky.social · 19/07/2026
Blood 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.com
Sick Duck
Alt: Sick animated duck in bed, puts head under the blue blanket
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Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026
Highly recommend these Hotteeze ones, they stay warm for ages! Sending healing vibes 🫶
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Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026
I had awful chest and rib pain & a migraine last night, now this. So exhausted from being on pain all the time 💔
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Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026
I'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🤞🙏
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Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026
And 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 🫠💔
A close-up photo of a bright pink Hotteeze Heat Pads packet being held in someone's hand while they are sitting down. The packaging states that the heat pad is made in Japan and provides up to 14 hours of heat. Text on the front lists uses including temporary relief of muscular aches and pain, period pain, joint stiffness and backache. It also highlights that the pad is air-activated, self-heating, slim and lightweight, odourless, eco-friendly, and sticks to clothing rather than directly to the skin.
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Helen/OT_Skiff @otskiff.bsky.social · 18/07/2026
Mad 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 😂
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Helen/OT_Skiff @otskiff.bsky.social · 10/07/2026
Yesterday 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.com
Max Greenfield (Schmidt) Dry Heaving
Alt: 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
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Helen/OT_Skiff @otskiff.bsky.social · 10/07/2026
Blobs/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.com
Annie Murphy (Alexis Rose): I've Done It Before
Alt: 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".
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Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026
Sending 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 🫶💚
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Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026
I'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.
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Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026
Sometimes I wish my body could have one straightforward, obvious problem instead of being so cryptic 🙃
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Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026
I'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.
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Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026
So, 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 🙄
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Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026
I 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 🤷‍♀️
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Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026
This 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 🙈
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Helen/OT_Skiff @otskiff.bsky.social · 06/07/2026
Well, 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! 😱
Screenshot of a laboratory sputum culture result on a patient portal. The heading reads "Resulted Orders – Sputum - Culture and Sensitivities (C&S)." Under "Culture result," it states: "Growth of Pseudomonas aeruginosa (A)." The result is displayed in a table with columns for Result, Value and Reference Range.
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Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026
So 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 🙈
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Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026
I'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.
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Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026
I 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.
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Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026
The 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 🦠
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Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026
I'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
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Helen/OT_Skiff @otskiff.bsky.social · 02/07/2026
A beautiful garden visitor today. Thank you for brightening up my day 🦋💜🫶
A vibrant peacock butterfly with striking red wings and blue eye spots rests on a cluster of pale pink buddleia flowers in a sunny garden. The background is softly blurred with green foliage, making the butterfly and blooms stand out beautifully.
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Helen/OT_Skiff @otskiff.bsky.social · 30/06/2026
It'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 😬🙏
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Helen/OT_Skiff @otskiff.bsky.social · 30/06/2026
With 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 😬
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Helen/OT_Skiff @otskiff.bsky.social · 30/06/2026
Mission 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🤞
A collage of two photographs. The top image shows a white specimen pot wrapped in white tissue being held in a person's hand, ready for transport. The bottom image shows a box of co-amoxiclav 500 mg/125 mg film-coated tablets by Milpharm, with the label stating that it contains amoxicillin and clavulanic acid and noting that it contains penicillin.
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
For 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 🫶🧊❄️
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
It'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 💚
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
It'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 💚
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
Despite 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.
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
I 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.
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
I'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.
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
Anyway, 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 🙈
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
I 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.
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Helen/OT_Skiff @otskiff.bsky.social · 26/06/2026
Resp 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.
Close-up of a hand holding a white and green pharmacy paper bag that reads "100% Recyclable & Compostable" against a bright summer scene with lush green trees, grass, colourful flowers, and blue skies.
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Helen/OT_Skiff @otskiff.bsky.social · 05/06/2026
Still 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
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Helen/OT_Skiff @otskiff.bsky.social · 05/06/2026
6 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 #Migraine
static.klipy.com
Schitt'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
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Helen/OT_Skiff @otskiff.bsky.social · 13/05/2026
Wish 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
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Helen/OT_Skiff @otskiff.bsky.social · 13/05/2026
Feeling 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
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Helen/OT_Skiff @otskiff.bsky.social · 22/04/2026
Coughed 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 #TeamClots
media.tenor.com
a 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"
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Helen/OT_Skiff @otskiff.bsky.social · 18/04/2026
Dont 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
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Helen/OT_Skiff @otskiff.bsky.social · 18/04/2026
It really is 🫂🫶
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Helen/OT_Skiff @otskiff.bsky.social · 18/04/2026
FFS 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
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Helen/OT_Skiff @otskiff.bsky.social · 18/04/2026
I’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.
Screenshot of a heart rate variability (HRV) app showing a 4-week view (22 March–18 April). A graph displays 7-day averages with early data points in green (balanced) around the low 30s, gradually increasing and turning orange (unbalanced) from early April onwards. The baseline range is shown in grey. Recent values reach around 41 ms and remain in the unbalanced zone. Overnight averages show 37 ms during sleep and 36 ms while awake. The latest entry (18 April) shows a 7-day average of 41 ms and an overnight average of 40 ms.
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Reposted by Helen/OT_Skiff
Helen The OT @helentheot.bsky.social · 17/04/2026
We need better recognition, better research, and collaboration to move this forward. Patients deserve better. #LongCovid #PwME #MECFS #SafeRehab #TeamClots
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Reposted by Helen/OT_Skiff
Helen 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
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Reposted by Helen/OT_Skiff
Helen The OT @helentheot.bsky.social · 17/04/2026
But 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
A presentation slide titled “Take home messages.”
The slide lists key summary points:
Patients with Long COVID and ME experience post-exertional malaise (PEM), where symptoms worsen with exercise
Mitochondrial alterations have been widely described in Long COVID
Different factors may drive reduced exercise capacity (“fatigue”) versus PEM, with the underlying cause still unknown
Skeletal muscle changes after strict bed rest differ from those seen in post-viral conditions
Microvascular changes may be useful for diagnosis and for understanding disease mechanisms
International collaboration is important going forward
On the right side, there is a small inset image of a speaker standing at a podium.
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Reposted by Helen/OT_Skiff
Helen The OT @helentheot.bsky.social · 17/04/2026
Big 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
A presentation slide titled “Microvascular dysfunction in long COVID & ME.”
On the left, bullet points describe key features:
Reduced lumen space
Endothelial activation and dysfunction
Basement membrane thickening
Reduced metabolite removal and reduced oxygen (O₂) and nutrient delivery, predisposing to fatigue
In the centre, there is a diagram of a small blood vessel (capillary). It shows narrowed vessel walls, a cluster resembling a clot or obstruction, and red and blue blood cells moving through a constricted space. The illustration suggests impaired blood flow and exchange.
At the bottom, a question reads: “Does local perfusion deficits and local hypoxia cause mitochondrial dysfunction, or vice versa?”
On the right side, there is a small inset image of a speaker presenting at a podium.
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Reposted by Helen/OT_Skiff
Helen The OT @helentheot.bsky.social · 17/04/2026
Leading to: ⚠️ Poor oxygen & nutrient delivery ⚠️ Poor waste removal = A perfect storm for fatigue and symptom flares. #LongCovid #PwME #MECFS #PEM #SafeRehab #TeamClots
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