Helen/OT_Skiff

Screenshot of an Instagram “Memories” page showing a story from six years ago. The story image shows a table with a vase of colourful tulips (purple, pink and yellow), a glass of champagne, and a leaving card that reads “Sorry you’re leaving.” Overlaid text on the story says “Start dream job on Mon!” and a music sticker shows the song Celebration by Kool & The Gang.

This memory pops up every year & it always takes my breath away.

6 years ago I was about to start my dream job in neurorehabilitation. I had an active social life, went to the gym regularly & was even looking at houses to buy. Life was great!

#LongCovid #PwME #POTS #Pacing #OccupationalTherapy

Long COVID Web Webinar Series- Highlighting the Current Landscape of Rehabilitation in Long COVID YouTube video by Long COVID Web

In September 2024, I was invited to speak at another webinar, this time for @longcovidweb.bsky.social

youtu.be/v8qf78lehpU?...

#LongCovid #PwME #POTS #Pacing #OccupationalTherapy

Pacing YouTube video by Long COVID Physio

In the Summer of 2023, I played a small role in the making of the @longcovidphysio.bsky.social Pacing episode in their video series.

youtu.be/USLg5FT86TQ?...

#LongCovid #PwME #POTS #Pacing #OccupationalTherapy

In March 2023, I was honoured to speak at a webinar hosted by CAOT called “Long Covid & Episodic Disability: Considerations for Rehab” with Prof @kellyobrien25.bsky.social

caot.ca/site/prac-re...

#LongCovid #PwME #POTS #Pacing #OccupationalTherapy

Day 2 - Workshop: Daily Activities and Work YouTube video by Long COVID Physio

Throwing it back to September 2022 and the @longcovidphysio.bsky.social International Forum.

I was part of the planning committee for this event & also had the privilege of Chairing the Daily Activities & Work workshop.

youtu.be/cw0Ltg1NyPI?...

#LongCovid #PwME #POTS #Pacing #OccupationalTherapy

Blog "Bring It On" — Long COVID Physio Occupational Therapist Helen provides updates on her experiences of crashing, pacing, acceptance, returning to work, boosters, and why we need to count Long COVID.

Number 5 in my “Things I’ve Been Involved With” series 💚

Another blog for @longcovidphysio, this one titled “Bring It On”.

longcovid.physio/blog/bring-i...

#LongCovid #PwME #POTS #Pacing #OccupationalTherapy

Helen - PoTS UK Hi, my name is Helen & I’m 31 years old. My PoTS symptoms started when I was unwell with Covid in March 2020. I remember feeling faint, having palpitations and my chest felt tight. I put all of this d...

Number 4 in my “Things I’ve Been Involved With” series 💜

www.potsuk.org/stories/helen/

In the summer of 2021, I was diagnosed with POTS.

#LongCovid #POTS #PwME #chronicillness #OccupationalTherapy

Episode 37 - Long Covid and Me

Number 3 in my “Things I’ve been involved with” series 🎙️

This one was another podcast, for the OT & Chill series.

open.spotify.com/episode/5kxx...

#LongCovid #POTS #PwME #chronicillness #OccupationalTherapy

A white screen with the Long Covid Physio logo at the top (a blue circular virus-like symbol with a person icon in the centre). Below it, the date “14 Feb” appears. Large bold black text reads: “Should I stay or should I go?”

The next advocacy piece I was involved in was a blog for @longcovid.physio titled "Should I stay or should I go"

longcovid.physio/blog/should-...

#LongCovid #POTS #PwME #chronicillness #OccupationalTherapy

Graphic for the Long Covid Physio Podcast. On the left is the Long Covid Physio logo and text reading “The Podcast – Helen: ‘Navigating Pacing’” with the handle @LongCovidPhysio and social media icons underneath. On the right is a simple line illustration of a studio microphone. Video length shown as 50:11.

Thought I’d start sharing links to podcasts & webinars I’ve been involved in over the years.

Starting with the very first one!

It began with a tweet about spoons, which led to a chat on the @longcovidphysio.bsky.social podcast.

#LongCovid #POTS #ChronicIllness #Pacing #OccupationalTherapy

And behind the scenes, I’m in the preparation phase of setting up my own independent OT practice, with hopes to launch in the next few months 💚

Grateful for these opportunities and for the small sparks of purpose returning 🙏

#occupationaltherapy #LongCovid #PwME #chronicillness

An exciting start to 2026 so far 💚

In Jan, I was appointed joint Specialism Lead for ME/CFS & Long Covid in the @thercot.bsky.social Long Term Conditions Network.

#occupationaltherapy #LongCovid #PwME #chronicillness

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.

Oooh I've just received this & I have a lot of feedback to give about this particular appointment 🙈

#LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

To add salt in the wound this all happened at the very hospital I was working in when I caught covid in the first place...nice to see that absolutely nothing had changed

#LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

💯 it is astounding!

It really is 🫶

So confusing!

Thank you, that means a lot 🫶

The medical student nodded when I said all my issues started after Covid. The consultant just looked at me like I was mad. Maybe there’s hope for the future after all 🙏

#LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

I left feeling like I’d been in a fight for 15 minutes. Grateful tests are happening, but being believed shouldn’t be this hard.

#LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

Somehow further tests were still ordered, minimising and investigating, which is such a confusing mix.

#LongCovid #PwME #POTS #MCAS #ChronicMigraine #TeamClots

Repeatedly questioned whether I was “really” well pre-Covid (at least 5 times), asked to justify my #POTS diagnosis & 🫁 clot history & abnormal blood results (the reason for referral) brushed off as “stress”. It felt like an interrogation.

#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.

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

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).

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

Sounds wonderful!

Thank you so much & happy belated birthday 🫶

Thank you!

Still crashy from Christmas & started triple last week but feeling hopeful for 2026 🙏

Last week I was appointed as Specialism Lead for Long Covid in the RCOT Long Term Conditions Network & I was also invited to peer review a paper, made me feel like an OT again 💚🥹

36 today 🎂✨
The last few weeks I’ve been freaking out & feeling like a loser, life looks so different to what I imagined. I’ve had #LongCovid for all of my 30s (and typically spent my last night at 35 with a migraine from hell 🙃).
#POTS #PwME #MCAS #ChronicMigraine

I'm on a lot of meds for everything. I'm on loratidine, famotidine, ketotifen & sodium cromoglicate for MCAS and these seem to have really helped partivularly the latter 2