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   Michael Mathews (micmath@fosstodon.org)'s status on Sunday, 18-Jun-2023 04:23:29 JST Michael Mathews

   • Thomas 🔭🕹️

   @thomasfuchs I will add “exercise” to the list. I guess exercise might help some people, for me it was impossible. And I emotionally beat myself up for not being able to. I don’t think I am unique in that way.

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     Ken (knwlkr@universeodon.com)'s status on Sunday, 18-Jun-2023 08:01:33 JST Ken

     • Thomas 🔭🕹️

     @thomasfuchs Was shocked and dismayed after my wife’s diagnosis to discover this nonsense exists for cancer victims, too.

     Gently explaining this to well-meaning friends who share snake oil hopes with you is one of the many new indignities we discovered along the journey.

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     SewBlue (sewblue@sfba.social)'s status on Sunday, 18-Jun-2023 10:26:37 JST SewBlue

     • Thomas 🔭🕹️

     @thomasfuchs You do need a balance though, without the hard science available yet. I'm an engineer, and the woo-woo stuff drives me nuts. So much BS out there

     My story. Long covid made me bed bound for months. I could not stand more than a minute or two, and they looked at giving me oxygen. I was living and working from bed.

     Over time, I found that a careful diet avoiding carbs and sugar controlled it. If I cheated the fatigue would return like clock work, along with heat palpitations. I absolutely hated it but it worked.

     Metformin has been shown to help reduce long covid risk by controlling insulin, so it is likely I hacked my way there. Who knows yet. The science can't happen fast enough.

     I then got covid again and it cleared out my long covid. I like to think my diet helped but who knows.

     I hate the randomness of this disease.

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     SewBlue (sewblue@sfba.social)'s status on Sunday, 18-Jun-2023 14:06:49 JST SewBlue

     • Thomas 🔭🕹️

     @thomasfuchs Personally I think there are several underlying causes, which is why diet and meds work differently in different people.

     Antihistamines for mast cell activation did squat for me, but work wonders for others.

     But in retrospect for me, every measure I took that helped control my insulin levels helped, while others failed. Most of my symptoms aligned with hyperglycemia, down to the incredible thirst, 130 oz a day. But without the high blood sugar or A1C.

     Covid left my lungs scarred so I will never be what I was, but that is easier to deal with than that fatigue.

     Edit: adding missing word