Helen/OT_Skiff
@otskiff.bsky.social
Occupational Therapist (neurorehab) on pause due to #LongCOVID, #POTS, #PwME, #ChronicMigraine, #VestibularMigraine #HSD, #MCAS & #TeamClots 🫁
Swiftie 🫶, F1 🏎, cricket 🏏 fan
London, UK
Swiftie 🫶, F1 🏎, cricket 🏏 fan
London, UK
I’ve spent the rest of the day in bed, still processing it but feeling seen and cautiously hopeful.
It’s been a long wait but definitely worth it. I really hope this is the start of a new chapter of this rollercoaster 🎢✨
#LongCovid #PwME #MCAS #TeamClots #Migraine
It’s been a long wait but definitely worth it. I really hope this is the start of a new chapter of this rollercoaster 🎢✨
#LongCovid #PwME #MCAS #TeamClots #Migraine
November 7, 2025 at 6:05 PM
I’ve spent the rest of the day in bed, still processing it but feeling seen and cautiously hopeful.
It’s been a long wait but definitely worth it. I really hope this is the start of a new chapter of this rollercoaster 🎢✨
#LongCovid #PwME #MCAS #TeamClots #Migraine
It’s been a long wait but definitely worth it. I really hope this is the start of a new chapter of this rollercoaster 🎢✨
#LongCovid #PwME #MCAS #TeamClots #Migraine
A great reminder that it is not "brain fog" but #cognitiveimpairment. Here is a paper I wrote with @kirrabrean about this very topic
journals.lww.com/cptj/fulltex...
#LongCovid #PwME #MCAS #TeamClots #Migraine
journals.lww.com/cptj/fulltex...
#LongCovid #PwME #MCAS #TeamClots #Migraine
journals.lww.com
November 7, 2025 at 6:05 PM
A great reminder that it is not "brain fog" but #cognitiveimpairment. Here is a paper I wrote with @kirrabrean about this very topic
journals.lww.com/cptj/fulltex...
#LongCovid #PwME #MCAS #TeamClots #Migraine
journals.lww.com/cptj/fulltex...
#LongCovid #PwME #MCAS #TeamClots #Migraine
I also got my cognitive assessment results, which showed difficulties in a few areas. She’s recommending cognitive rehab, oh the irony, since I used to be a specialist neuro OT helping others with exactly that 💚 #OTWeek25
#LongCovid #PwME #MCAS #TeamClots #Migraine
#LongCovid #PwME #MCAS #TeamClots #Migraine
November 7, 2025 at 6:05 PM
I also got my cognitive assessment results, which showed difficulties in a few areas. She’s recommending cognitive rehab, oh the irony, since I used to be a specialist neuro OT helping others with exactly that 💚 #OTWeek25
#LongCovid #PwME #MCAS #TeamClots #Migraine
#LongCovid #PwME #MCAS #TeamClots #Migraine
After years of deliberation, it looks like I’ll be adding another antiplatelet, so I’ll be on triple anticoag therapy 🙏
Dr Kane also suggested some other treatments/theories and I'm still processing it all 🤯
#LongCovid #PwME #MCAS #TeamClots #Migraine
Dr Kane also suggested some other treatments/theories and I'm still processing it all 🤯
#LongCovid #PwME #MCAS #TeamClots #Migraine
November 7, 2025 at 6:05 PM
After years of deliberation, it looks like I’ll be adding another antiplatelet, so I’ll be on triple anticoag therapy 🙏
Dr Kane also suggested some other treatments/theories and I'm still processing it all 🤯
#LongCovid #PwME #MCAS #TeamClots #Migraine
Dr Kane also suggested some other treatments/theories and I'm still processing it all 🤯
#LongCovid #PwME #MCAS #TeamClots #Migraine
And today I had my first appointment with @binitakane.bsky.social at #TheLongCovidClinic and it did not disappoint!
It was so validating. She was incredibly kind, understanding & really joined the dots in ways that made everything make sense.
#LongCovid #PwME #MCAS #TeamClots #Migraine
It was so validating. She was incredibly kind, understanding & really joined the dots in ways that made everything make sense.
#LongCovid #PwME #MCAS #TeamClots #Migraine
November 7, 2025 at 6:05 PM
And today I had my first appointment with @binitakane.bsky.social at #TheLongCovidClinic and it did not disappoint!
It was so validating. She was incredibly kind, understanding & really joined the dots in ways that made everything make sense.
#LongCovid #PwME #MCAS #TeamClots #Migraine
It was so validating. She was incredibly kind, understanding & really joined the dots in ways that made everything make sense.
#LongCovid #PwME #MCAS #TeamClots #Migraine
I share my story so future patients, maybe you or someone you love, won’t have to face the same battles.
People with PoTS already have enough to deal with.
Getting help shouldn’t be this hard 💜
#PoTSAwarenessDay #PoTS #LongCovid #DisabilityAwareness
People with PoTS already have enough to deal with.
Getting help shouldn’t be this hard 💜
#PoTSAwarenessDay #PoTS #LongCovid #DisabilityAwareness
October 25, 2025 at 3:06 PM
I share my story so future patients, maybe you or someone you love, won’t have to face the same battles.
People with PoTS already have enough to deal with.
Getting help shouldn’t be this hard 💜
#PoTSAwarenessDay #PoTS #LongCovid #DisabilityAwareness
People with PoTS already have enough to deal with.
Getting help shouldn’t be this hard 💜
#PoTSAwarenessDay #PoTS #LongCovid #DisabilityAwareness
So thank you for reading this 💙 and to everyone who’s supported awareness and petitions I’ve shared.
I speak up because PoTS is life changing and debilitating and deserves far more understanding and support than it gets.
I speak up because PoTS is life changing and debilitating and deserves far more understanding and support than it gets.
October 25, 2025 at 3:06 PM
So thank you for reading this 💙 and to everyone who’s supported awareness and petitions I’ve shared.
I speak up because PoTS is life changing and debilitating and deserves far more understanding and support than it gets.
I speak up because PoTS is life changing and debilitating and deserves far more understanding and support than it gets.
A 24-hour ECG showed my heart rate hitting 166 bpm while I was just at work, yet the consultant wrote “no abnormality detected.”
That error delayed my diagnosis by a whole year.
That error delayed my diagnosis by a whole year.
October 25, 2025 at 3:06 PM
A 24-hour ECG showed my heart rate hitting 166 bpm while I was just at work, yet the consultant wrote “no abnormality detected.”
That error delayed my diagnosis by a whole year.
That error delayed my diagnosis by a whole year.
It’s exhausting having to explain what #PoTS is at almost every appointment and often being met with disbelief.
Getting diagnosed was a battle, I was told I was “stressed” or “anxious.”
One GP even said:
“Everyone working in the NHS is stressed and tired.”
Getting diagnosed was a battle, I was told I was “stressed” or “anxious.”
One GP even said:
“Everyone working in the NHS is stressed and tired.”
October 25, 2025 at 3:06 PM
It’s exhausting having to explain what #PoTS is at almost every appointment and often being met with disbelief.
Getting diagnosed was a battle, I was told I was “stressed” or “anxious.”
One GP even said:
“Everyone working in the NHS is stressed and tired.”
Getting diagnosed was a battle, I was told I was “stressed” or “anxious.”
One GP even said:
“Everyone working in the NHS is stressed and tired.”
Living with PoTS also makes you realise just how little accessible seating there is in public spaces, not that I get out much these days anyway.
October 25, 2025 at 3:06 PM
Living with PoTS also makes you realise just how little accessible seating there is in public spaces, not that I get out much these days anyway.
I take multiple meds to lower my heart rate & manage symptoms.
I drink litres of fluids daily, add salt, wear compression, and keep my feet up because it’s hard to tolerate having them on the floor.
I use a walker so I can sit when I feel faint.
I drink litres of fluids daily, add salt, wear compression, and keep my feet up because it’s hard to tolerate having them on the floor.
I use a walker so I can sit when I feel faint.
October 25, 2025 at 3:06 PM
I take multiple meds to lower my heart rate & manage symptoms.
I drink litres of fluids daily, add salt, wear compression, and keep my feet up because it’s hard to tolerate having them on the floor.
I use a walker so I can sit when I feel faint.
I drink litres of fluids daily, add salt, wear compression, and keep my feet up because it’s hard to tolerate having them on the floor.
I use a walker so I can sit when I feel faint.
Here’s what I deal with daily:
💫 Feeling faint
💜 Blood pooling / acrocyanosis (hands & feet turn purple)
🔥 Overheating / temperature dysregulation
💓 Palpitations
😴 Fatigue
🍽️ Gastro issues
💥 Pins & needles
💆 “Coat hanger” pain
⚡ Migraines
…and more.
💫 Feeling faint
💜 Blood pooling / acrocyanosis (hands & feet turn purple)
🔥 Overheating / temperature dysregulation
💓 Palpitations
😴 Fatigue
🍽️ Gastro issues
💥 Pins & needles
💆 “Coat hanger” pain
⚡ Migraines
…and more.
October 25, 2025 at 3:06 PM
Here’s what I deal with daily:
💫 Feeling faint
💜 Blood pooling / acrocyanosis (hands & feet turn purple)
🔥 Overheating / temperature dysregulation
💓 Palpitations
😴 Fatigue
🍽️ Gastro issues
💥 Pins & needles
💆 “Coat hanger” pain
⚡ Migraines
…and more.
💫 Feeling faint
💜 Blood pooling / acrocyanosis (hands & feet turn purple)
🔥 Overheating / temperature dysregulation
💓 Palpitations
😴 Fatigue
🍽️ Gastro issues
💥 Pins & needles
💆 “Coat hanger” pain
⚡ Migraines
…and more.
PoTS (Postural Orthostatic Tachycardia Syndrome) means my autonomic nervous system — the one that controls things like heart rate, digestion & temperature, doesn’t work properly.
It affects almost everything in my body.
It affects almost everything in my body.
October 25, 2025 at 3:06 PM
PoTS (Postural Orthostatic Tachycardia Syndrome) means my autonomic nervous system — the one that controls things like heart rate, digestion & temperature, doesn’t work properly.
It affects almost everything in my body.
It affects almost everything in my body.
I joked that I’d only agree to another bronch if I could have propofol again. He said yes.
Wild how I used to fear general anaesthetic, and now it’s the only time my body gets a break from itself.
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
Wild how I used to fear general anaesthetic, and now it’s the only time my body gets a break from itself.
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
October 17, 2025 at 5:23 PM
I joked that I’d only agree to another bronch if I could have propofol again. He said yes.
Wild how I used to fear general anaesthetic, and now it’s the only time my body gets a break from itself.
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
Wild how I used to fear general anaesthetic, and now it’s the only time my body gets a break from itself.
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
But I left feeling heard, supported, and grateful, which makes all the difference 🌿
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
October 17, 2025 at 5:19 PM
But I left feeling heard, supported, and grateful, which makes all the difference 🌿
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
We had a really good chat about my 🫁. I’ll need some more tests and possibly another bronchoscopy… fun times 😅 He said if I have another bronch i'll be his 1st ever patient to have 2 in 1 year...lucky me 😬😱
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
October 17, 2025 at 5:19 PM
We had a really good chat about my 🫁. I’ll need some more tests and possibly another bronchoscopy… fun times 😅 He said if I have another bronch i'll be his 1st ever patient to have 2 in 1 year...lucky me 😬😱
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
The appt actually went really well. I saw my wonderful consultant/ex colleague which was such a lovely surprise 🫶
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
October 17, 2025 at 5:19 PM
The appt actually went really well. I saw my wonderful consultant/ex colleague which was such a lovely surprise 🫶
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
I still love autumn though 🍂 The changing colours always have a way of grounding me, even on the hardest hospital days.
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
October 17, 2025 at 5:19 PM
I still love autumn though 🍂 The changing colours always have a way of grounding me, even on the hardest hospital days.
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots
#LongCovid #PwME #POTS #MCAS #Migraine #TeamClots