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@lovesgreys

The back & forth has been going on for several months. The first time I thought it was over, then I felt terrible again. I had hope again the next time I started to feel better. Now I know better, and just enjoy the reprieve. After all this time, it feels so good to have a few sort of normal days.

Just like you, I pretty much don’t go anywhere. I don’t know when I’m going to crash, and feel safest being at home. When I do go out, my husband drives me because I’ve gotten stuck, and can’t drive myself home.

One thing y’all are really helping me with is hearing you say how people are responding to you. It’s hard enough to be feeling so bad all the time. It’s terribly upsetting when friends don’t quite believe me, and keep pushing me to do things I’m unable to do. I get so tired of having to explain why I can’t go.

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Replies to "The back & forth has been going on for several months. The first time I thought..."

You are absolutely right, or its all the advice on what to do to make you feel better like you haven't tried everything already. So like you I feel safer at home 🥺

Yes, I hear you! It would be so much easier if we had a visible problem such as a broken leg! I began feeling significantly better after taking Qi Gong!

This is so hard, and I’m so sorry. It is crazy-making, not knowing HOW you’ll be from day to day, minute to minute.
I think you can find all different experiences— some improving over time, others not. I recently ( finally) found an immunologist who is proactive about my treatment, BUT— this is after having it for ‘awhile’ ( March 2020! ) and realizing I was getting worse every flare up— until I stopped having breaks between flare ups. Now it’s one continuous yuck. My dr also said I had some autoimmune issues prior to Covid; but Covid has mangled all systems.