Helen/OT_Skiff
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otskiff.bsky.social
Helen/OT_Skiff
@otskiff.bsky.social
1.9K followers 2.9K following 360 posts
Occupational Therapist (neurorehab) on pause due to #LongCOVID, #POTS, #PwME, #ChronicMigraine, #VestibularMigraine #HSD, #MCAS & #TeamClots 🫁

Swiftie 🫶, F1 🏎, cricket 🏏 fan

London, UK
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otskiff.bsky.social
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.
October 25, 2025 at 3:06 PM
otskiff.bsky.social
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.
October 17, 2025 at 5:19 PM
otskiff.bsky.social
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.
October 9, 2025 at 7:09 PM
otskiff.bsky.social
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.
October 6, 2025 at 5:06 PM
otskiff.bsky.social
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.
October 1, 2025 at 10:46 AM
otskiff.bsky.social
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.
October 1, 2025 at 10:44 AM
otskiff.bsky.social
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
A phone notification that reads: “Congratulations! You have been migraine free for 1 week.” The message is displayed in a rectangular banner with an icon of a purple-haired woman’s face in profile on the left.
September 27, 2025 at 10:52 AM
otskiff.bsky.social
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.
September 24, 2025 at 1:39 PM
otskiff.bsky.social
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.
September 19, 2025 at 6:36 PM
otskiff.bsky.social
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.
September 18, 2025 at 10:57 AM
otskiff.bsky.social
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.
September 12, 2025 at 11:52 AM
otskiff.bsky.social
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.”
August 28, 2025 at 6:44 PM
otskiff.bsky.social
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
August 17, 2025 at 11:17 AM
otskiff.bsky.social
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.
August 15, 2025 at 11:29 AM
otskiff.bsky.social
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
August 13, 2025 at 5:02 PM
otskiff.bsky.social
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.
August 10, 2025 at 11:16 AM
otskiff.bsky.social
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.
June 28, 2025 at 7:20 PM
otskiff.bsky.social
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.
June 27, 2025 at 7:21 PM
otskiff.bsky.social
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
A box of medication - flunarizine
June 10, 2025 at 7:23 PM
otskiff.bsky.social
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.
June 6, 2025 at 10:52 AM
otskiff.bsky.social
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
June 6, 2025 at 10:52 AM
otskiff.bsky.social
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
May 8, 2025 at 9:05 AM
otskiff.bsky.social
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"
April 21, 2025 at 11:23 AM
otskiff.bsky.social
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.
March 22, 2025 at 1:39 PM
otskiff.bsky.social
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"**
March 15, 2025 at 2:26 PM