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Blessed To Be's avatar

There you go! A supper club DOES sound nice!

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Blessed To Be's avatar

Have you thought of starting a zoom support/club, or something for people who suffer with this?

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mad mayday's avatar

There are so many! I have considered joining one but talking about it isn't really helping nowadays -- there is a LOT of noise and so many studies and new medical journal articles, and "have you tried this or that supplement?" and I can't keep up anymore. I'm trying to figure out ways to remove myself from the internet firehose and slowly add activities, work on small house projects while I feel up to is -- there are endless projects to do because this place is about 90 years old, and needs so much tlc.

Also I read that as "supper club" at first and thought "oh that sounds nice!"

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A. Potentilla's avatar

I was going to "heart" this, but I'm not sure that is the right emoji. Nevertheless, I hope that a treatment becomes available for everyone in your situation that is actually effective.

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mad mayday's avatar

Thank you, I do too. Even if there isn't it would be nice if our loved ones took this seriously and did a little reading so we can move on from "you should xyz." The Ed Yong article in the footnotes is a good start. Apart from my partner, who sees me on the good and bad days, most family interactions have been exhausting because this condition doesn't cooperate with normal ways of healing and rest.

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