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Managing post exertional malaise
Post-COVID Recovery & COVID-19 | Last Active: Aug 16 8:38pm | Replies (43)Comment receiving replies
Thank you all for sharing your experiences! I appreciate your support and advice. I had been pacing myself fairly well since I had the crash that prompted me to reach out to this community, but I am back in another (albeit milder) crash that started yesterday. I think this time it was triggered by driving - I was in the car for about 2 hours driving back/forth to appointments. I really find driving to be very exhausting because it’s just constant focus.
It’s really frustrating to accept that this is my life now, and really scary to not know how long it will last. Up until yesterday, I was feeling pretty good. Pacing myself for sure, but also functioning fairly well within those constraints. I had even convinced myself that I was improving and would be back to normal soon. The crash this week has made me realize that I am not out of the woods, that I am still vulnerable, and it scares me.
Replies to "Thank you all for sharing your experiences! I appreciate your support and advice. I had been..."
driving is a big deal for me. I haven't driven more than 1 1/2 hours since November 2020. We don't realize how much 'brain work' is involved. If I am going to do something taxing I plan nothing the day before and after. Normally I cross out 2 days a week for recovery; no appointments, errands, detailed/complicated brain work. It's what I need to be able to function the other 5 days a week. If I don't feel well I cancel my plans for the day.
It's a yo-yo life and taken 3.5 years to find my balance and where my boundaries are. There are far less things I really HAVE to do than I thought-sometimes I WANT so much to do something that it feels like a need, but it really isn't. Prioritizing, pacing and pivoting are my key words. Your balance is not the same as anyone else's. The longest I have gone without a crash is 4 weeks-I just keep forgetting to manage myself and revert to pre-covid expectations.
PT, OT, Speech made a big difference in figuring out how to do things differently.
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I was a cereal breakfast person but after 2 covids I crash near 4-5 hours to last 6-7 I have to have a substantial Bft and a nap and a snack midmorning to get to 1PM. If i'm planning on going shopping I have to skip BP meds till I get back.
So goes the battle for 3 yrs. However I'm 86