iiinova — where your digital self keeps evolving

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 · 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 · 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

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

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

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 · 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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Helen/OT_Skiff @otskiff.bsky.social · 11/04/2026

First 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

A flat lay of medical supplies on a wooden surface, including a pack of non-sterile gauze swabs, a 70% isopropyl alcohol wipe, a syringe in sterile packaging, a capped needle, and a small brown glass ampoule of injectable medication.

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Helen/OT_Skiff @otskiff.bsky.social · 10/04/2026

Ticagrelor 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

Pink blossom trees in full bloom line a residential street with brick houses and parked cars under a grey, overcast sky.

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Helen/OT_Skiff @otskiff.bsky.social · 02/04/2026

After 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

A handmade thank-you card on brown kraft paper sits on a wooden surface next to a small pack of iced biscuits wrapped in clear plastic. The card features a bouquet made from small colorful paper flowers (yellow, pink, purple, and white) with drawn stems and a silver ribbon bow. “Thank you” is handwritten at the bottom. The biscuits are round with white icing, thank you is written in the centre with a heart at the bottom and a small label on the clear packaging that reads “Handmade with love.”

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Helen/OT_Skiff @otskiff.bsky.social · 27/03/2026

Goodbye clopi, hello Ticagrelor. Hoping for benefits,minimal side effects & nothing scary! 🙏 #LongCovid #POTS #MCAS #Migraine #TeamClots

Three boxes of medications arranged on a light patterned surface. At the top is a white box labeled “Brilique 90 mg (ticagrelor)” by AstraZeneca. In the middle is a white and blue box labeled “Apixaban 5 mg film-coated tablets” by Sandoz. At the bottom is a yellow box labeled “Aspirin 75 mg gastro-resistant tablets” containing 28 tablets. The medications are stacked vertically and appear unopened.

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Helen/OT_Skiff @otskiff.bsky.social · 19/03/2026

I 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

A screenshot of a reflective written post on a light grey background. The text describes the author’s involvement in the Long Covid Physio Covid Inquiry team for Module 3, which focuses on the impact of COVID-19 on healthcare systems. It explains that the work has been a significant and difficult undertaking while being unwell. The post reflects on the release of the Module 3 report, expressing mixed emotions—particularly disappointment, though not surprise. It highlights validation in seeing criticism of infection prevention and control guidance, while also acknowledging the pain of “what ifs” and how different policies might have changed the author’s health outcome. The final paragraph notes the emotional timing, as it is nearly six years since the COVID infection that changed their life.

A continuation of a reflective written post on a light grey background. The text expresses frustration and irony that the report’s findings are being released while similar public health mistakes are happening again, referencing a meningitis situation in Kent. It questions whether lessons have truly been learned.
The post acknowledges some positives, including a dedicated chapter on Long Covid and recognition of affected healthcare workers, but highlights disappointment that Long Covid was not included in the main recommendations. It describes feelings of being sidelined and the emotional toll following Long Covid Awareness Day, noting a lack of wider engagement and the sense of speaking into an echo chamber.
The final section mentions small positives, such as references to prevention measures like HEPA filtration in healthcare, but ends with skepticism about whether these changes will actually be implemented.

A continuation of a reflective written post on a light grey background. The text acknowledges small positives in the report, such as references to prevention measures like HEPA filtration in healthcare, but expresses doubt that these will be implemented. It highlights frustration with Recommendation 10, which focuses on supporting healthcare workers with burnout and PTSD, while questioning the absence of support for those with Long Covid—especially those unable to work or whose lives have become significantly limited.
The tone reflects mixed emotions, balancing recognition of some progress with feelings of exclusion and disappointment. The post ends on a reflective and compassionate note, remembering patients and colleagues who have died, and expressing solidarity with others living with Long Covid, many of whom have become close friends.

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Helen/OT_Skiff @otskiff.bsky.social · 15/03/2026

Every tablet in this photo tells a story about what Long Covid has taken from my life. #LCAD26 #LongCOVIDAwarenessDay #LongCovidHeartbeats #EveryHeartbeatCounts

A collage of eight photos arranged in a grid. In each image, a hand is held open with different groups of tablets, capsules, and supplements resting in the palm. The pills vary in size, shape, and colour, including white, cream, pink, blue, and black tablets, as well as clear and white capsules. Some photos show just a few pills while others show larger mixed groups. The background appears to be a pale patterned bedsheet. The sequence of images illustrates multiple sets of medication taken throughout the day, highlighting the large number of tablets required to manage chronic illness.

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Helen/OT_Skiff @otskiff.bsky.social · 11/02/2026

Oooh I've just received this & I have a lot of feedback to give about this particular appointment 🙈 #LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

Screenshot of a text message on a dark background inviting the recipient to complete a 3-minute outpatient experience survey, with a link provided to give feedback to help improve care.

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Helen/OT_Skiff @otskiff.bsky.social · 10/02/2026

Had my long-awaited endocrinology appt yesterday and it felt deeply minimising. Woke up to the clinic letter today and realised I wasn’t imagining it. #LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

Screenshot of a clinic letter with most text obscured by blue scribbles. The visible sentence at the top reads: “She is pretty certain all her medical issues started after covid infection.” The rest of the letter content is deliberately hidden to protect privacy.

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Helen/OT_Skiff @otskiff.bsky.social · 14/01/2026

Registration is now open for @uoftcovidrehab.bsky.social 2026 International Forum on COVID Rehabilitation Research rehabcovidnetwork.med.utoronto.ca/news/registr... @kellyobrien25.bsky.social #LongCovid #SafeRehab

Flyer for the “2026 International Forum on COVID Rehabilitation Research” at the University of Toronto, Friday April 17, 2026, 10am–5pm EDT, hybrid (Zoom and in-person).

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Helen/OT_Skiff @otskiff.bsky.social · 05/01/2026

Started triple therapy today 🙏 Already been on apixaban & aspirin for years, now adding clopi 💊 Feeling nervous but hopeful, praying for benefits, mild side effects and nothing scary 🤞🤍🙏 #LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

Three boxes of medication stacked on a wooden surface: Aspirin 75 mg gastro-resistant tablets on top, Apixaban 5 mg film-coated tablets in the middle, and Clopidogrel 75 mg film-coated tablets at the bottom, indicating triple antithrombotic therapy.

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Helen/OT_Skiff @otskiff.bsky.social · 25/10/2025

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. 🧵👇

A collage of nine photos showing life with PoTS (Postural Orthostatic Tachycardia Syndrome).

1. Colourful weekly pill organisers filled with medication.

2. A pulse oximeter showing SpO₂ 89% and heart rate 152 bpm.

3. Helen sitting on a mobility scooter outdoors, carrying shopping.

4. A backpack resting on a four-wheeled walker.

5. A smartwatch alert reading “Abnormal High Heart Rate Detected.”

6. Two boxes filled with prescription medications and bottles.

7. A pulse oximeter reading SpO₂ 99% and heart rate 141 bpm.

8. Helen v unwell at an appt, lying on a medical examination couch, having her heart rate & blood pressure checked.

9. A fitness tracker graph showing heart rate data throughout the day, with peaks around activity.

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Helen/OT_Skiff @otskiff.bsky.social · 17/10/2025

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

A peaceful garden in autumn with bright pink roses in full bloom surrounded by green foliage and plants. Behind them, trees with orange and brown leaves show the change of season. A wooden bench sits to the left, creating a calm, reflective scene.

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Helen/OT_Skiff @otskiff.bsky.social · 09/10/2025

Also, my mum is the sweetest, she made me this to cheer me up earlier 🙈💛

A white mug with the words “A big hug in a mug for Helen” printed on it, placed on a red checkered tray beside a small cupcake topped with white icing and chocolate chips arranged in a smiley face.

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Helen/OT_Skiff @otskiff.bsky.social · 06/10/2025

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

A travel brochure from “Exodus Adventure Travels” titled The Collection 2026 | 2027, featuring images of people hiking in the mountains and a scenic street view with a yellow archway and volcano in the background.

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Helen/OT_Skiff @otskiff.bsky.social · 01/10/2025

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

Two screenshots. The top image is from the Garmin app, showing HRV data from September to October. Green circles mark “Balanced,” orange squares “Unbalanced,” and red triangles “Low.” A label “start Pred” points to where HRV rises after beginning prednisone, and a label “stop Pred” points to where HRV falls after stopping. The bottom image is from the Visible app, showing a “Morning Stability” score of 1.

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Helen/OT_Skiff @otskiff.bsky.social · 01/10/2025

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

Three blood sample tubes inside a sealed biohazard transport bag, placed on a wooden surface. A yellow absorbent pad is visible inside the bag.

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Helen/OT_Skiff @otskiff.bsky.social · 27/09/2025

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

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Helen/OT_Skiff @otskiff.bsky.social · 24/09/2025

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

Silver blister pack of Prednisolone tablets on a pink blanket, with six small white tablets placed in front of it.

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Helen/OT_Skiff @otskiff.bsky.social · 19/09/2025

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

Chart of 7-day averages from 23 Aug to 19 Sept. Values start within baseline, then drop below baseline—shifting from balanced (green) to unbalanced (orange) and finally low (red) by mid-September.

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Helen/OT_Skiff @otskiff.bsky.social · 18/09/2025

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

Two boxes of Prednisolone 5mg tablets on a green and white pharmacy bag.

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Helen/OT_Skiff @otskiff.bsky.social · 12/09/2025

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

A health tracking app screenshot. At the top, large numbers show: Stress 86% (High, in red), Energy 21% (Low, in orange), and Health 100% (Resilient, in green). Below is a graph with green circles (Balanced), orange squares (Unbalanced), and red triangles (Low) plotted across dates from 16/08 to 12/09, showing a decline from balanced into unbalanced and low.

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Helen/OT_Skiff @otskiff.bsky.social · 28/08/2025

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

Bright rainbow in a cloudy sky over rooftops and trees, with a faint second rainbow visible to the left.”

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Helen/OT_Skiff @otskiff.bsky.social · 17/08/2025

Well, this made me cry all over again! We've been messaging & she's been sharing lots of pics/vids which has been lovely. Just gutted I couldn't be there and celebrate! So tired of watching everyone live from the sidelines 💔 #LongCovid #PwME #POTS #NEISVoid #MCAS #ChronicMigraine #TeamClots

A screenshot of a WhatsApp message white background with "Honestly haf the best day. Only thing missing was you!" written in black text

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Helen/OT_Skiff @otskiff.bsky.social · 15/08/2025

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

A health and wellness dashboard displaying three metrics at the top: Stress at 85% (labeled "Taxing" in yellow), Energy at 26% (labeled "Low" in red), and Health at 100% (labeled "Resilient" in green). Below is a timeline chart from July 19 to August 15, showing a decline in wellness scores. The chart uses colored symbols: green circles for "Balanced," orange squares for "Unbalanced," and red triangles for "Low." The graph shows a transition from mostly green circles to orange squares, and then to a series of red triangles, indicating a progressive drop in overall balance or wellness.

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Helen/OT_Skiff @otskiff.bsky.social · 13/08/2025

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 💚

A Participant Activity Diary from the University of Salford titled 'Exploring the real-world experience of adults with Long-Covid in Salford: a feasibility study.' A small orange and black ActivPAL4 activity monitor rests on the paper, with a bright pink padded envelope partially covering the diary

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Helen/OT_Skiff @otskiff.bsky.social · 10/08/2025

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

The image shows a health tracking app dashboard with three key metrics at the top:

Stress: 97% – labeled "Very high" in red.

Energy: 14% – labeled "Shortage" in red.

Health: 45% – labeled "Vulnerable" in yellow.

Below, there’s a line chart from 14/07 to 10/08 tracking daily scores. The chart uses:

Green circles for "Balanced" days,

Orange squares for "Unbalanced" days,

Red triangles for "Low" days,

Gray background band showing the baseline range.

The trend starts in the balanced range but gradually declines over time, moving into unbalanced and then low levels near the end of the period.

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Helen/OT_Skiff @otskiff.bsky.social · 28/06/2025

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

A small bunch of bright yellow sunflowers with dark centers arranged in a pale cream metal jug, placed against a plain light purple wall. The flowers are slightly tilted and vibrant, with green leaves adding contrast.

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Helen/OT_Skiff @otskiff.bsky.social · 27/06/2025

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

Entrance to a Clinical Research Facility, showing a stairway with metal railings and a platform lift for accessibility. The words "CLINICAL RESEARCH FACILITY" are displayed above the entrance. The interior beyond the glass doors is well-lit with a visible clock and posters on the wall.

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Helen/OT_Skiff @otskiff.bsky.social · 10/06/2025

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

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Helen/OT_Skiff @otskiff.bsky.social · 06/06/2025

I found this pic which made me laugh. I was given the red socks. Something I have given to patients or helped them put on countless times over the years. Another weird moment of how something so small can be linked to so much grief 💔💚 #LongCOVID #POTS #PwME #MCAS #TeamClots

Person lying in hospital bed but only foot of bed in view & zoomed in on feet. Person is wearing red hospital grippy socks.

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Helen/OT_Skiff @otskiff.bsky.social · 06/06/2025

I don't even have a sore throat so im taking it as a win. The only evidence I have is sore hands from being a pin cushion. #LongCOVID #POTS #ChronicMigraine #VestibularMigraine #Migraine #PwME #MECFS #MCAS #TeamClots #NEISVoid

Bruised hands on a pink barbie blanket. Two beaded bracelets are on each wrist

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Helen/OT_Skiff @otskiff.bsky.social · 08/05/2025

They did some thorough testing and surprise it actually showed something including nystagmus. And she feels it is most likely #VestibularMigraine but also could be damage to the vestibular system due to #COVID_19 & is most likely a mix of both. #LongCOVID #POTS #PwME #MCAS

A letter that says: "We had a long conversation about these results which are compatible with both migraines dizziness and also dizziness related to a vestibular insult typical of COVID-19.

A Report showing:

Videonystagmography - showed mild first degree right beating gaze nystagmus to the right measured at 6 degrees/s and fully suppressed with fixations

Cervical vestibular evoked myogenic potentials - are present bilaterally although slightly delayed. Responses are absent at 85DB in both ear

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Helen/OT_Skiff @otskiff.bsky.social · 21/04/2025

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

A phone notification saying "congratulations you have been migraine free for 1 week"

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Helen/OT_Skiff @otskiff.bsky.social · 22/03/2025

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

A collage split into two sections titled "Pre 2020 - 'old Helen'" and "Post 2020 - 'new Helen'."
The top half shows two images of "old Helen": one of her skydiving with an instructor through the clouds, and another of her smiling on the Brooklyn Bridge in summer attire.
The bottom half shows "new Helen": one photo of her sitting on a mobility scooter in a park, dressed warmly and carrying shopping bags, and another close-up of a smartwatch screen displaying a warning that says "Abnormal High Heart Rate Detected.

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Helen/OT_Skiff @otskiff.bsky.social · 15/03/2025

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

The image contains a handwritten message on a beige or light brown background. The text is written in different colors, including blue and green. It reads:

**"I THINK OF GRIEF FOR MY OLD LIFE.
I keep getting clots on my lungs despite blood thinners, I'm exhausted, I have POTS and migraines. The symptoms are relentless.

#LongCOVIDAHP

Helen"**

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Helen/OT_Skiff @otskiff.bsky.social · 15/03/2025

We need research/treatments & I'm so grateful to those out there who are trying! But it has been half a decade of gaslighting & neglect. More people continue to develop #LongCovid. We need action! #POTS #MECFS #PwME #ChronicMigraine #VestibularMigraine #POTS #TeamClots #MCAS

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Helen/OT_Skiff @otskiff.bsky.social · 15/03/2025

I don't think there is a minute of any day that I'm not feeling some sort of discomfort or symptoms. It is slow and prolonged torture. I spend my life reclined & barely leave the house. #LongCovid #POTS #MECFS #PwME #ChronicMigraine #VestibularMigraine #POTS #TeamClots #MCAS #BerlinBuyers

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Helen/OT_Skiff @otskiff.bsky.social · 15/03/2025

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

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Helen/OT_Skiff @otskiff.bsky.social · 09/03/2025

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

A view of the Houses of Parliament across the River Thames on an overcast day. In the foreground, a stone wall and paved walkway line the riverbank. Bare tree branches frame the top of the image, adding to the somber atmosphere. The perspective is from the COVID Memorial Wall (the plain side)

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Helen/OT_Skiff @otskiff.bsky.social · 05/03/2025

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

A Facebook memory from five years ago featuring a story post. The image shows a wooden table with a bouquet of tulips in a white vase, a 'Sorry You're Leaving' card with colorful stick-figure drawings, and a glass of sparkling wine. The overlay text reads: 'Start dream job on Mon!' with the song 'Celebration' by Kool & The Gang playing in the background

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Helen/OT_Skiff @otskiff.bsky.social · 01/03/2025

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

A plate of freshly made Welsh cakes, golden brown with a dusting of sugar, sits on a wooden table. Behind them, a cream-colored enamel jug holds a bouquet of bright yellow daffodils, some in full bloom and others still in bud form.

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Helen/OT_Skiff @otskiff.bsky.social · 20/02/2025

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

A garden entrance on a cloudy day, with a paved pathway leading into the green space. The garden features grass, trees without leaves, and some flowering plants. Three short stone bollards line the roadside in the foreground, separating the pavement from the street. There is an information board near the entrance, along with a bench further in. The scene suggests late winter or early spring.

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