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corona with a twist of lyme

by Jun 2, 2022

I don’t want to unintentionally ghost or be all secretive about this indefinite sabbatical; I just don’t have energy, the story is long, and my mysterious illness is awkward, especially knowing that everyone has their own complicated stuff.  That said, it appears whatever this is will be sticking around and I’ll be MIA for quite awhile. Currently, the best case scenario is that I may have long Corona with a twist of Lyme? I give it a 3/10 — do not recommend — real weird, but it could be worse. For those with patience, time, and curiosity…

PREFACE: I’m fully aware that if anyone has been playing a particularly morbid game where they have a list of ailments and need to match each with a friend most likely to carry– I would obviously be designated Lyme. One just can’t go out gallivanting in the woods and tent camping all 48 contiguous states without risking tick encounters! and I’ve encountered more than a few in my years! I’m not even exactly sure what sent my system into this spiral — but for these purposes — it started around quarantine…

2020:  The world is at the start of a deadly pandemic. Our society is crumbling as we watch system after system fail. Most of the population is in the throes of an existential crisis and the rest are hoarding TP. I cope with long walks, native gardening, and Everlore on repeat. Just before everything shuts down, both my teens get back to back rough cases of mono while I start getting a new reaction to bug bites– basically, they swell up into these massive, hot, painful welts that make me queasy, feverish, and take weeks to go away — accompanied by severe head, back, and abdominal pain — that we assume are all unrelated. My allergist, GP, chiro, and gyne treat me as best they can — I don’t feel well at all — but we also never really leave the house and I tell myself that most people don’t feel great amidst this chaos.

2021:  As the world starts to reopen, I go cautiously back to Kelcam and a little normal life, excited to see people, but for some reason, everything is strangely exhausting and disorientating. The weight of my camera hangs like an actual albatross, especially with the continued head/back/abdominal pain. I assume that I am just out of practice. And getting older. And quarantine changed me. And that is okay!! I upgrade to lighter gear. I plan my jobs with more recovery between. I extend my editing time. I only accept projects and activities that spark joy. But what used to be naturally easy and fun for me all feels weirdly hard.

SUMMER 2021:  The family wants an old-school adventure together. My absolute favorite. We decide on a train to the west-coast. I contentedly sleep and listen to The Magicians and watch the blur roll by for days. Off the train, we hike and explore and the kids laugh because usually I’m leading the “forced death marches” but instead, “Mama V is sitting on a boulder two mountains back”. I push through, take more breaks, and bow out regularly to sleep –all while joking about being old and out of shape– but I know that what I have doesn’t feel like being out of shape. It is more like an unabating flu: I’m beyond exhausted and my body aches down to every muscle, bone, and nerve. I’m mentally hazy, dizzy, clumsy, intense waves of vertigo, and my vision is real wacked; it hurts my brain to look at a screen, book, camera… or even be in a well lit room. The migraine that has been my on and off companion since middle school is taking more and more meds to even dull. We get back, I visit ALL my doctors — and everything is normal — it must just be an innate stress response or 45 or validated depression with the dystopian world. I decide to heavily limit all extras so that I can make it through my Kelcam busy season, but then I’m going to be in tune with my body and rest and hibernate. No exceptions.

WINTER 2022:  As soon as my life-mate goes back to the classroom after winter break, I get covid; and I get it bad. I’m one of those people who strongly believes that the 3 vaxes saved my life. I don’t remember anything from the first weeks except the extreme and unsettling pressure in my chest, brain, and eyes. Nerve pain. Tremors. Everything is super sensitive:  light, sound, touch, temp, emotions. I sleep way more than I’m awake. My body and mind feel like lead. I can’t follow shows or books or even a conversation. After a month, I finally test negative, but I never really recover — taste and smell eventually come back, but different. I rally just to take a shower or walk up 4 steps or look at my phone. Each time I try to push through and do something, even easy things that I really want to be doing, my symptoms get worse; So I chill in my comfiest clothes, learn how to play Animal Crossing, and go to more and more specialists.

DIAGNOSIS:  So far, all of the labs, tests, and scans are still normal — with the exception of a different Lyme test. On the Western Blot, I have 8/10 IgG bands. It is explained that I definitely had Lyme in the past, so it may be a complicating factor, but technically, the Lyme isn’t currently active, so this could be a combo of any number of things:  chronic lyme or long-haul covid or autoimmune or neurological or something else entirely. It could go away on its own or stay like this or flare or keep getting worse. I spend a few weeks on Doxy and then a few more weeks with a PICC line for IV administered Rocephin. It’s not fun and apparently with this sort of thing, often it does get worse before it gets better. I’ll keep going to specialists, but in the meantime, I’m embracing my inner granola — we all knew it was only a matter of time. I’m resetting, eating clean, and reducing my toxic load while trying herbs, fungi, and earthy stuff to see if any of that helps.

CURRENTLY:  My body and mind are still in a rough spot — and at times — it is all hard, especially the neurological and cognitive parts.  The pain and inflammation are somewhat managed as long as I’m on meds and really resting– but that is such a small window. I’d love to be able to see people someday! or leave the house!! or respond to texts!!! For now — as ridiculously pitiful as it seems — everything is too much. Feel free to email me ideas or thoughts or stories or recommendations or good vibes or just check-in!  But please please please try not to take it personally when I don’t respond. Sometimes I can and other times I just can’t.

The good news is that (for the most part) my soul is sincerely okay!!!! I enjoy the time on my patio watching nature do its thing. I don’t mind routinely falling asleep before sunset. I have a new appreciation for my own garden and home and art and Spotify. I love my required daily stroll with a rotating family member. And meditating! I can meditate for hours (some in the house call it napping). Truth be told, it seems that my family might prefer this slower version of me — and if I’m being especially self-reflective, sometimes… I do too.

It is taking some adjustment because this is really not the original plan for this stage of my life — but I don’t need anything. My housemates genuinely treat me like their queen — and I will be spending the indeterminate future contentedly getting my Animal Crossing island to 5 stars while convalescing in my real life MCM suburban split-level. And maybe I’ll hear whatever it is I’m supposed to in this season of compulsory stillness.

until whenever:  may you be safe. may you be healthy. may you be happy. may you live with ease. I’ve got 3 of 4 right now, and I’ll take it.  Peace & Love Always–
Traditional suffixes, but they have my own meaning:  BC=Before Covid / AD=After Disease 🙂