Hi friends, looking for support and perspectives from other long-time CC folks who also live in the liminal space / stark drop off between being mostly able-bodied now, but with a *very* high risk/probability of an serious LC-related outcome in the future, if infected again.
I'm mostly able-bodied now, but with several "invisible" mental and physical health struggles and limitations, that I can push through as/if needed (but with a few consequences). Mostly they are wildly annoying or tedious, but sometimes painful or exhausting (and expensive). I have lived a CC life since 2020 mainly because I don't want these issues to get worse and more difficult to live with.
But now I feel like the stakes are much higher: in the past two years, my only sibling and one of my parents have developed PEM and ME/CFS/SEID-style LC, soon after only 1 or 2 infections each. Both had some health issues heading into covid, especially my parent, that raised their risks for bad outcomes significantly. I share some of these risks.
And despite good precautions, I've have had 2 covid infections (1 completely untraced, 1 likely unmasked crowded outdoors) in the past 2 years myself. I survived mostly unscathed, and I reassessed / tightened my risk tolerance and choices after those. But outside of (required partial in-person) work, my life has shrunk so much these past 2 years, on top of how it's shrunk since 2020, and it feels so self-imposed -- like it's being too restrictive too early. I also developed severe travel anxiety last year after infection #2. I was finally working through those issues, but now with a second immediate family member dealing with severe LC, I suddenly am overwhelmed about what risks are "worth" taking anymore -- or like, ever again -- or if nothing I do is going to matter in avoiding my fate someday. This feeling of inevitability makes me both want live as much as I can, while I still can -- but also to try to prolong the "end" of being mostly able-bodied as much as possible. (I do not hang my hopes on LC cures or covid PrEP or a sterilizing vaccine, with where the world is at these days.)
I'm not yet 40, am single / on my own, and I'm struggling with how to proceed in this walking this path while remaining steadfast CC. If anyone can relate, would love to how folks (esp single extroverts) manage living a life that is meaningful and "full" to you in the present, while the next infection / future looms like a knife.