By: Revanche

Living in the time of pandemic: COVID-19 (115)

August 15, 2022

Year 3 of COVID in the Bay Area.

Year 3, Day 143: This bit resonated so strongly with me from: Laziness Does Not Exist; But unseen barriers do

“She was busy with therapy and switching medications, and all the side effects that entails. Sometimes, she was not able to leave the house or sit still in a classroom for hours. She didn’t dare tell her other professors that this was why she was missing classes and late, sometimes, on assignments; they’d think she was using her illness as an excuse. But she trusted me to understand.

And I did. And I was so, so angry that this student was made to feel responsible for her symptoms. She was balancing a full course load, a part-time job, and ongoing, serious mental health treatment. And she was capable of intuiting her needs and communicating them with others. She was a fucking badass, not a lazy fuck. I told her so.”

I hesitated to disclose my physical illness to any bosses for exactly the same reason: fear I’d be seen as my illness, fear I’d only be judged by my worst days. I’d seen this happen over and over for other people making mistakes, why wouldn’t it happen when I had a mysterious health condition that didn’t even yet have a name?

*****

This Monday is especially hard. Two kids home with me, PiC working on site, my work carrying on as usual, a school Zoom conference in the evening at dinnertime.

My stress levels are peaking: school starting soon, we’re making an attempt to register JB for much in demand swim classes at the local pool (cross your fingers for us, please?), Smol Acrobat’s daycare to start in less than a month has me entirely frazzled.

I’m worrying about disease, of course (all of which Smol will bring home to me), and Smol’s experience. I really hope they are open to being social with the teachers and kids at daycare without us. I hope they don’t have separation anxiety every dropoff like some of the kids I remember when dropping off JB. It broke my heart when those little toddlers were released by their parents who had to go. The sobbing little bundles would crawl up on my lap, any lap would do at that point, for comfort. JB, across the yard playing while I sat there patting little Toddler’s back, would occasionally notice I was still there and wave but otherwise they were happily busy. I hope for an experience closer to JB’s for Smol.

*****

This frog made me smile but I looked at it too long and now I’m mildly creeped out and I do not know why:

HES SO COOL pic.twitter.com/lFNpkuBdhN

— glurpo (@glurpo) August 7, 2022

Year 3, Day 144: My subconscious is really flipping after seeing my family. I’ve had family related dreams for a solid week; last night it was my big cousin telling me he’d buy my books at the bookstore and desperately trying to pick a second book in time, only to fail and find out I’d missed dozens of text messages from friends expecting me at a funeral I was now late for. I have no idea how to unpack this latest.

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This article struck so close to home: Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

I’ve been fighting with CFS for ten years and didn’t really know what it was until last year. Without knowing about the PACE study, I replicated their theories in my life, assuming I just needed to build up my stamina by forcing myself to get out and exercise regardless of how I felt. The results were generally consistent: when I didn’t feel up to it, it made me feel worse. When I did feel up to it, I came back more tired. That elusive second wind I remembered from my teens after a good run never occurred. This past summer it finally struck me that maybe it’s a one way street between my fitness and my health. Meaning: even if I am fit in the sense of being capable of the walking, and have stamina, that still doesn’t help when my health is damaged. On a poor health day, I gasp for breath with every step and on an ok health day, I can walk without too much effort. My stamina is always impacted by my health and not the other way around. I always blamed myself for being out of shape but it makes more sense that it’s simply not how I can function with CFS.

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Related: it’s kind of a bummer that last week and this week have been every bit as hard, and more, as I was braced for.

I was hoping to be proven wrong. But I’m absolutely dragging after 7 days of JB home during the workday plus Smol Acrobat at full steam and lots of days where PiC wasn’t around for Smol support.

JB goes back to school tomorrow. I hope that’s going to be a net gain for me in terms of energy.

*****

This is so cool!

PPS. In tonight’s session, I recorded Elsie when I asked her to lie down and be quiet. pic.twitter.com/Cg1bO5ArPV
— Mary Robinette Kowal@🏡 (@MaryRobinette) August 8, 2022

Year 3, Day 145: Yuck. I felt like garbage this afternoon. I don’t know what’s up with my electrolytes but the more water I drank, the worse I felt. I snacked a lot too, for the salt, but it didn’t do the trick. The full body weakness and nausea segued into a pounding headache by dinnertime. Bodies. So unreasonable.

OTOH, at dinner, Smol ate a whole slice of pizza with most of the toppings for the first time! Normally they reject everything but the crust so I’d feel terrible about their lack of nutrition but today was a relatively decent food day. They had oatmeal, granola and raisins for breakfast, yogurt for snack, fried rice for lunch, and pizza and grapes for dinner with minimal food waste and minimal coaxing. It’s generally the food waste that gets my goat, and the exasperating rapid fire rejections of any and all foods on offer, just eat something! I’m partly worried they’ll wake up unbelievably early hungry but also just generally annoyed by the experiment. There was less of both today.

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This tweet led me down an interesting path of rain garden and conservation links. Not that I have time for it right now but it’s good to know.

*****

It’s striking and scary for my version of ME/CFS to only be considered mild. I’ve definitely lost more than 50% of my function and that’s only MILD.

Today is #SevereMEAwarenessDay
Today we pause and remember those lost to Severe ME. Those who are suffering with no treatment. The 25% 💙 We NEED research. We NEED treatment. We NEED to raise awareness. Please RT.#MECFS #MyalgicEncephalomyelitis#SevereME #SevereMEDay pic.twitter.com/sP7LMswxzD

— Rachel Curtis 🌍 ♿ 🌹 🇪🇺 (@RachelCurtis82) August 8, 2022

Year 3, Day 146: As much as I enjoy the ritual of back to school shopping, this article wasn’t us this year. At least not for JB. It helps of course that only one of ours is school age right now. Our spending will probably look different in five years. The majority of school shopping we did was for our Lakota folks and for local schools: Back-to-school shopping takes ‘a major financial toll’ amid high inflation. Here’s how to save on supplies for the fall

Our own school runs a huge fundraiser annually and pays for all the school supplies out of that pot, so the teachers ask parents to supply a small list of optional items. This year that list is: tissues, paper towels, wipes and prize items. That approach does seem more sensible. They can shop the sales and buy in bulk all at once.

We did buy JB a lunchbag this year, and they’re reusing a backpack that they were gifted two years ago.

On the other hand, having saved on the school supplies (minus the $150-200 contribution we’ll make the school’s various fundraisers), we’re spending on my old car next. The battery is shot(?), one tire has a slow leak, and we need a battery backup thing. We borrowed a friend’s trickle charger and used it to confirm our alternator isn’t bad. I’ve been on the hunt for a jump starter for a few months. I wonder if they might also have a trickle charge function because that’s handy at home. I think we can have EITHER a trickle charger OR a jump starter, though. I suppose we do the former for home and the latter for the road?

Update: the car battery is not shot. Yay! The trickle charger finally revived the battery enough to be usable again.

Year 3, Day 147: Sera made a local friend! She got to play with a puppy that was just adopted by our neighbors. It was great. Also I got puppy kisses so life felt pretty good.

While it was a happy morning treat, we’d also gotten out the door really early for school drop off. It was an hour of socializing by the time we detached from the multiple people we encountered after dropping JB off. That’s about 45 minutes too much for me mentally and physically first thing in the morning. The next two hours of Smol time were the longest hours of my life. Excruciating. I had to stay conscious and upright, and get them into their crib for their one nap of the day so that I could then cram in a full day of work into their unconscious period. Phew. Struggle.

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I’ve been muddling around in my feelings a LOT lately.

The first week of school is done as of today annnnnd we also just got our first COVID exposure notice. It’s been three days with no pooled testing and no mask mandate. Who’s surprised? Anyone? Anyone? Bueller?

Other things pushing my anxiety buttons deet-doot-deet: Smol’s upcoming daycare start and related separation anxiety. We have to put together daycare approved supplies: toothbrush, sunscreen (nut free which, for some reason, includes coconut even though I have argued for four years that coconuts aren’t actually nuts), boots, hat, blanket, water bottle … what else? I don’t want to wait until the week before and scramble to get their things together.

Holiday planning because I already have to be working on ALL THAT right now and it’s hugely complicated.

I need to make some packing cubes and need to buy super long zippers. This isn’t actually stressful. I simply lack the decision making power by the time I get to this end of the list to actually do the thing.

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