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Carol

@tickedoffcodess.bsky.social
15 followers 12 following 14 posts

Life on pause. 💻 Codess & 🐶 Fur-Mom #ChronicLyme | #hEDS | #HyperPOTS | #LongCovid | #MCAS | #SevereME | #SFN | 👶 SCL ✈️ MIA ✈️ ONT ✈️ SEA ✈️ SJC TickedOffCodess.com

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Carol @tickedoffcodess.bsky.social · 15/03/2026
My daily med schedule: 9 AM — 23 pills 12 PM — 9 pills 1 PM — heart racing from walking to the bathroom 3 PM — 7 pills, then crash 6 PM — 12 pills, dinner in bed 9 PM — 14 pills 65 pills a day. This is not laziness. This is Long COVID. #LongCOVID #LongCovidAwareness
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Carol @tickedoffcodess.bsky.social · 15/03/2026
Long COVID by the numbers: 400 million people affected worldwide 200+ documented symptoms 10–26% of COVID survivors develop it 0 FDA-approved treatments 6 years and counting Read that last one again. #LongCOVID #LongCOVIDAwareness #MillionsMissing
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Carol @tickedoffcodess.bsky.social · 15/03/2026
People say "you don't look sick." That's because you don't see the 23.5 hours I spend in bed to get those 30 minutes sitting. Long COVID isn't invisible. You're just not looking. #LongCOVID #InvisibleIllness #ChronicIllness
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Carol @tickedoffcodess.bsky.social · 15/03/2026
March 15, 2020 → March 15, 2026. 6 years ago today, COVID took my health. I still haven't gotten it back. Today is International Long COVID Awareness Day. 513+ landmarks are lighting up teal tonight worldwide. I'm still here. We're still here. #LongCOVID #LongCOVIDAwareness
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Carol @tickedoffcodess.bsky.social · 07/03/2026
The blog post is 28 minutes long because getting out of rolling PEM deserves depth. If you have ME/CFS, please pace your reading. Bookmark it. Come back when you’re ready. It’s here whenever you need it.
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Carol @tickedoffcodess.bsky.social · 07/03/2026
This is my story, not a prescription. ME/CFS is not one-size-fits-all. Not everyone can pace — many face barriers like lack of support, income, or accessibility. I share this in solidarity with everyone fighting this illness.
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Carol @tickedoffcodess.bsky.social · 07/03/2026
And also: ♿ Mobility and accessibility aids 🏥 Managing comorbidities (POTS, MCAS, migraines) 📋 The PEM Avoidance Toolkit 📝 Symptom monitoring 💊 Low-dose Abilify 🔄 Breaking down tasks to do them supine
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Carol @tickedoffcodess.bsky.social · 07/03/2026
What helped me: 🫀 Heart rate pacing 🛏️ Aggressive rest therapy 📊 HRV tracking 🧠 Calming the autonomic nervous system 🤝 Asking for help and delegating 🚫 Setting boundaries
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Carol @tickedoffcodess.bsky.social · 07/03/2026
How I got out of rolling PEM with severe ME/CFS. It wasn’t one thing. It was a combination of strategies practiced consistently over months to break the crash cycle. Part 2 of 3 breaks down every strategy. 🧵 tickedoffcodess.com/how-i-got-out-of-rolling-pem-part-2/
tickedoffcodess.com
How I Got Out of Rolling PEM: Part 2 - Ticked Off Codess
How I got out of rolling PEM with very severe ME/CFS through aggressive rest, symptom tracking, pacing, and managing comorbidities--real strategies that worked.
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Carol @tickedoffcodess.bsky.social · 06/03/2026
If you’ve ever been stuck in rolling PEM — crash stacking on crash with no end in sight — I see you. You’re not weak. You’re not lazy. And you’re not alone. I wrote this series for you. tickedoffcodess.com/how-i-escaped-the-horror-of-rolling-pem-part-1/
tickedoffcodess.com
How I Escaped the Horror of Rolling PEM: Part 1 - Ticked Off Codess
In these blog posts, I will tell you how I got into rolling PEM and what it did to my health and well-being (part 1). I will share how I managed to get out of
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Carol @tickedoffcodess.bsky.social · 06/03/2026
But that low point became my turning point. I realized I needed a completely different approach to pacing — one grounded in physiology, not guesswork. Part 2 shares the strategies I used to get out: tickedoffcodess.com/how-i-got-out-of-rolling-pem-part-2/
tickedoffcodess.com
How I Got Out of Rolling PEM: Part 2 - Ticked Off Codess
How I got out of rolling PEM with very severe ME/CFS through aggressive rest, symptom tracking, pacing, and managing comorbidities--real strategies that worked.
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Carol @tickedoffcodess.bsky.social · 05/03/2026
I lost my ADLs — mobility, grooming, toileting, dressing, feeding. My partner became my full-time caregiver. I was bedridden, in excruciating pain, and verging on very severe ME/CFS. I felt hopeless and isolated.
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Carol @tickedoffcodess.bsky.social · 05/03/2026
Rolling PEM is when you don’t recover from one crash before the next one hits. Everything triggered it. Walking 30 steps to the bathroom. Sitting up in bed. Even the vibrations of our dogs on the mattress. No beginning. No end. Just nonstop symptoms.
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Carol @tickedoffcodess.bsky.social · 05/03/2026
By the summer of 2021, I was trapped in rolling PEM. Crash after crash with no recovery in between. Long Covid had pushed me into severe ME/CFS. I was desperate. But I wasn’t done. This is Part 1 of 3. 🧵 tickedoffcodess.com/how-i-escaped-the-horror-of-rolling-pem-part-1/
tickedoffcodess.com
How I Escaped the Horror of Rolling PEM: Part 1 - Ticked Off Codess
In these blog posts, I will tell you how I got into rolling PEM and what it did to my health and well-being (part 1). I will share how I managed to get out of
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