“You Can’t Know Until You Try”

Visiting Florida, my then-partner and I talked about our plan to go to Universal Studios next. My grandmother got out a faded technicolor photo album from her trip to Disney World in 1970.

I got the hint.

“Do you want to come with us?” 

“Let me think about it.”

                …

“If I go with you, I’ll need a wheelchair, and then we’ll get to go to the front of all the lines.”*

At Space Mountain, if I recall correctly, signs warned that the ride — Raiders of the Lost Ark? — was intense.

“Are you sure you want to go on this one? It won’t be too much for you?”

“You can’t know until you try.”

It was a little too much for me, but not for her. I have such happy memories of that day, because my grandmother had such fun.

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The Long Covid learning curve is a never-ending thing. Would it be too much for me to go to my cousin’s diving meet? 

Diving rounds, it turned out, ran simultaneously with swim heats. There was a lot of cheering, whistling, clapping, and general exuberant happy college student energy bouncing off the walls. I found a seat at the back, put in the earplugs, started taking photos.

I watched the various dives, recalled my own brief period of diving lessons, wondered what might happen if I tried a back flip now. When the dull roar crescendoed into deafening rumpus I put my hands over my ears. I was having a good time. 

After 30 minutes I stood up to leave. My stomach threatened revolt, my legs were weak, my balance was shot; I took the stairs carefully, gripping the rail. Back home, I staggered in the house and dropped into bed.

Catherine, bringing me tea: “was it worth it?” 

I don’t know. 

I’ve been working an hour a day, maybe two, trying to finish editing a book. I try to pace myself carefully: if I push myself too hard, I can’t work the next day. Or days. Or weeks. My eyes don’t focus. My short-term memory, gone. I can embiggen the type, and read the letters and the words. I can follow a short sentence. Anything longer, my brain runs out of memory buffer. I can’t hold on to it, so I can’t process it. 

The rest of today is shot. Tomorrow? I won’t know until I get there. 

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* Not a scam. My grandmother could stand, and she could walk. But she couldn’t stand in line for an hour or two, and she couldn’t walk miles around the park all day. Even the distance from the parking lot to the main gate would have wiped her out.

See someone who looks like they can do stuff, sporting a handicap tag? You have no idea what they’re carrying. Don’t judge.

Some Metacognition

I started keeping a log of activity and fatigue levels several days ago, and it got me thinking.

The idea was to see if any patterns emerge so maybe I can organize my life a little bettter. Turns out the answer is always the same: stuff happens. Before Long Covid, I’d roll with that Stuff and just keep moving, but now, Stuff Happens means something else doesn’t happen, and probably I still end up so exhausted I’m shaking. Pacing, ha ha.

Well, anyway, I ended up with some insights into how my brain works, and how it … doesn’t.

from “On Fire,” K. C. Greene

For my whole ADHD life, my brain has been like a ping pong ball catapult capable (look! alliteration!) of firing hundreds of rounds a minute. I was pretty good at catching some of the good ideas and making notes about things to think about later while swatting away or dodging everything else.

Turns out cognitive processing speed is much slower in people with Long Covid than in those who never got infected, or did, but recovered. The idea that slowed processing underlies everything wrong with my brain seems completely plausible.

Because I can’t multi-task any more.

Coming up with words — and spelling them! — while operationalizing syntactic rules of a language to form coherent sentences, working simultaneously bottom-up, top-down, front-to-back and back-to front, requires heavy-duty multi-tasking. 

Writing, same deal. It’s just a little less stressful because no one is watching while I struggle. Instead, I spend, well, sometimes hours, googling words and phrases to try to find the word I want. (“Plausible,” for instance.) Sequencing ideas and making sentences coherent, with brevity and maybe even wit, feels like hauling boulders.

Putting leftovers in a bowl and then in the microwave, food I’m not eating back in the fridge, and empty containers in the dishwasher? Multi-tasking. Before Covid Me wouldn’t even have remembered thinking about it; Long Covid Me gets wires crossed. (BCM? LCM? Hmmm.)

“On fire,” continued

The ballista keeps on launching. (“The Money Keeps Rolling In” from Evita ping-pongs to mind; nah, it doesn’t scan.) A news headline pisses me off (that’s its job now?), there’s a fawn in the neighbors’ yard, my mom sends a text (or five), a social media post gets me thinking, one of the dogs wants attention. Occasionally, the actual phone actually rings. So many decisions, so many ping-pongs to forget.

I try to write everything down. Seriously, everything. Yesterday Catherine noticed on her way out the door that the garbage truck hadn’t come yet and asked me to bring the can to the curb. I didn’t write it down, or do it immediately, and I didn’t think about it again until I heard the truck pulling away. Damn.

Last night, I made a note: “calendar the things.” This morning: What things? Uh-oh.

Alternatively, my mind latches onto some idea and won’t let go and … well, it’s interesting, and it’s important, but I need to spend my energy on other things, but I start looking things up and writing things down and looking up words and suddenly it’s two hours later and I have a headache and look, that almost-full cup of coffee is stone cold and I forgot to eat breakfast again. 

Sometimes forgetting seems like the less disruptive dysfunction.

Cooking is harder than laundry, also because thinking, slow thinking. I keep wondering why the physical demands of doing the laundry don’t take more out of me and why cooking hits me so hard, harder than it seems standing with peripheral neuropathy should be.

Slowed cognitive processing. I might follow a recipe or make it up as I go along; either way, I’m chopping and stirring, measuring carefully or eyeballing, trying not to forget anything, and still batting away ping-pong balls.

My big accomplishment the other day: I soaked a cup and a half of brown rice, drained it, measured water, started the stove, brought the pot to a boil, turned it down, cooked the rice until the water was gone, left it for a few more minutes, and then stirred it. Ye gods. If I ever *thought* about cooking rice before, it was 45 years ago. Now: so many steps. So many timers (an unexpected bonus of Apple watch). 

If I forget I’m doing laundry, maybe stuff gets a little wrinkled. I did laundry last weekend and there are still sheets and pillowcases in the living room. I’ll get to them, eventually.

If I forget I’m cooking? Things burn.

“On fire” concludes

Post Exertional Symptom Exacerbation: Don’t Blame the Sick Person

Man, did I need this today. 

Often post-exertional symptom exacerbation (PESE) is not triggered by overactivity. Showering, getting dressed, walking, loud noises, busy environments, or multi-tasking is not overactivity. Saying post-exertional symptom exacerbation is like a Boom-and-Bust cycle is patient blaming and unhelpful.

One of my hardest Long Covid symptoms is fatigue. It’s not like doing a long bike ride or a hike, a triathlon or a road race, or even pulling out all the stops to write an article or a syllabus, and then needing to rest up. 

It’s more like I do a little too much of basic normal activity and then I feel like I’ve been walloped by a giant wave. All I can do is wait out the days — usually four — until I revert to post-covid “normal.”

Yes, absolutely, I have been blaming myself for PESE, more commonly called post-exertional malaise, even if no one else does. The word “malaise” lingers in my head like a bad earworm. It makes me feel like a helpless, fainting stereotype of romance fiction. 

When I was diagnosed with Long Covid, I was referred to a physical therapist, who was very friendly and encouraging, but like most people, didn’t have much experience with Long Covid. She assigned balance and strength exercises, and to avoid over-exertion, told me to track my heart rate carefully: stop immediately if it went over 130, and rest after every set until it went below 90.

My balance improved and I stopped needing the rolling walker. But the brain fog — lousy short-term memory, struggling for words, toiling to come up with whole sentences, difficulty reading academic books and articles, and very wonky vision — was fierce.

The individual exercises didn’t feel hard, especially with so much rest between them. But the thing I didn’t understand about PESE is that it doesn’t emerge until many hours after exertion. Cognitive fatigue hits me immediately and hard, but the fatigue from exercise doesn’t appear until the next day.

Only months later did I stumble across an article about the problems with Graded Exercise Therapy.

Exercise was making me worse.

It finally dawned on me to stop.

The brain fog started to lift. Slowly. Too slowly. More cognitive energy turned out to mean crashing even faster, having to be even more careful. Academic writing, serious reading, a conversation about something I used to teach every year — 45 minutes in, and I’m stuttering, struggling for sentences, freezing up.

After some sedentary weeks, I started back on exercise at one minute. Yeah. ONE MINUTE. I’ve worked back, most days, to a ten-minute walk with the dog (she sniffs many things and makes sure I take lots of breaks) and ten minutes of yoga, mostly seated and prone poses. 

The RECOVER research protocol for the Long Covid fatigue sub-group calls for a baseline of 10 minutes or less, depending on ability, of aerobic activity. It also warns, strongly, that people in the trial should stop exercising if they get PESE. 

Reading that gave me a lightning-bolt shock of relief. 

I’m better at sitting down when I start getting light-headed, or stopping when I’m trying to write an email (or a blog post) and I start to feel the clamp around my head, or not exercising at all if I feel worn out. It’s a work in progress. 

It was so helpful to see the written words that say I’m not pushing myself too hard, but — 

the basic activities of everyday life are too hard for me.

Deep breath.

I have not been able to recover from Long Covid through sheer force of will. 

It’s okay.

Nope, Can’t Do It All

I can’t do it all. I can’t even do most of it. I am trying so hard to figure out how to make that work. 

The Atlantic’s long covid coverage is really good; a key observation for me was that people who are depressed don’t want to do anything, but people with chronic fatigue have a whole long list. It’s not that I’m too depressed to do things. I am sad because I can’t.

My brain doesn’t want to hold on to anything, so I’ve outsourced short-term memory and scheduling to my phone. I keep rearranging the lists to make more of the things happen, but it’s not working. Naaatch.

“No social media before breakfast” keeps me from doomscrolling. But writing is the easiest way for me to communicate, and the socials keep me connected with friends and family. Not to mention the news.

Actually seeing friends, on the other hand, is … really hard. I have trouble coming up with words and shaping sentences. Listening is even harder. I’m working so hard to remember what someone is saying that I miss the next thing, or I’ve forgotten some crucial part and I can’t understand what comes next. Group conversations? Forget it. 

When I write, I can go back and edit. I can google* to try to find a word. And man, I have been giving google a workout.

Exercise makes me feel better, as long as I do it carefully, with plenty of rest after every set. This means that a weight workout takes an hour and a half. Before Covid Me alternated arms and legs and finished in 20 minutes. 

Yoga also make me feel better, because that bike crash (the bad one, in 2017) left me with a damaged spine and hip, and pain that makes it hard to get out of bed in the morning. 

Walking Stella is good for me physically, though it tires me, and having her in the house keeps the deep dark black pit a lot farther away.

All the balance exercises, eye exercises, smell training, music, meds, and supplements are supposed to heal my brain. But if I did them all every day, I would have no time left to rest. If I don’t rest, I crash. If I crash, it takes anywhere from days to weeks before I recover. 

Plus, you know, I just got married, and I’d REALLY like to be a half-decent wife and at least clean the kitchen after Catherine makes us fabulous meals, maybe do some laundry, keep the place a little tidy.

So I’m at a loss. 

My newest strategy: A little is better than none. Just one eye and balance exercise every day, instead of all ten or so, mornings and evenings. A set of squats, a couple stretches. 

That might leave me time for half an hour of email triage and 45 minutes of academic writing, which is all I have the energy for anyway. Somehow, I have to find a way to be okay with that, and try to avoid asking the universe if this is going to be the rest of my life.

Any ideas? Do let me know.

__________

* Actually I have switched to Ecosia, which promises not to sell my data and to plant trees every time I use their browser. Because yeah, I AM still a tree-hugger.

Everything is Harder, the Tuesday Edition

Is it Tuesday? No, I think it’s Wednesday. But I haven’t gotten to the one thing I wanted to do yesterday, and I’m all out of energy again.

I think this scene in the saga starts on Sunday, when we got three inches of water in 20 minutes and spent then next hour running around trying to keep our garage from flooding. 

Is it Wednesday? Yes, it’s Wednesday. And I’m still tired.

This morning I sent a couple of emails to members of a couple of committees I’m on saying I’m probably going to have to resign, and do they want me to resign now or wait until the end of the cycle. Writing is easier than talking, but I’m still worn out by the time I find all the email addresses and send both messages. In addition to the cognitive issues, it’s emotionally hard to send these messages, because the committees do important work, and I want to be able to contribute.

Then I talk through the portal to the provider for one of my medications. Talking is hard to begin with, but talking with dropouts because the wifi signal is weak (my end or hers? I’ll never know) is even harder.

I look at social media. Why does that always turn out to be a mistake? Someone has posted an FYI: CVS has the new covid vax! I want it as soon as possible, because there is anecdotal evidence that getting revaccinated can help with long covid, and I don’t want to get covid again.

I call the local CVS. The recorded message says they have the vaccine in stock. I try to get through to a human, to see if this is really true, but fail, because that’s the way the world is designed right now, because why let a human do a job you can farm out to AI? Shitty AI, if you want my opinion.

I run off to CVS. They don’t have the vaccine. I tell them the recorded message says they do. They know. I try to explain that I don’t have energy to run around like this, because I have very little energy, and misinformation is actually harmful to me. Do they get it? I don’t know if they get it. Talking is hard. Talking when I am already tired.

Then I have to drive to the doctor’s office to pick up the papers for the disability application. At school, Catherine comes out to meet me at the car to take them to HR.

Home. Lunch. Crash.

Meds, Cognition, and Time

I think I have finally found a way to manage all the meds that doesn’t take a ton of cognitive energy, which I have so little of, all day.

Between all the medications and supplements, there are sixteen pills. Then there are the two inhalers, one  I snort up my nose, one that gets added to food, and one that has to be dissolved in liquid. It usually goes in my morning coffee and—thankfully—has no taste or texture.

I have to remember to take two as soon as I wake up. There’s a hefty handful each with breakfast and lunch, and few more at dinner and at bedtime. 

I’ve had reflux for years, and meds have never helped it, so for a long time I’ve had to be careful what I eat, and when. Adding all these pills to the mix was a process of trial and error to make sure anything that might bother my stomach goes in relatively early in the day and with food. Rolaids and occasionally Pepcid come in if I screw up.

Sometimes I dread eating breakfast because I know it means I have to choke down six more pills.

Before Covid (BC?), I had a hard time keeping track when I all I had to take antibiotics four times a day. Organizing and remembering all of the stuff I’m on now, mostly for brain and lung damage, for which it provides some welcome relief but not nearly enough, has been pretty overwhelming, and it has taken me many weeks to find a system. And remembering if I took a pill or used an inhaler? Yeah, right.

After much searching, I found a pill organizer that is actually big enough for the breakfast and lunch doses. Bonus: the daily inserts come out of the organizer, which makes them so much easier to fill and empty than the kind where everything is connected.

And I’ve finally figured out how to use the iPhone “tasks” app effectively. I’ve divided up the day into two-hour intervals and I can check everything off when I do it, and then uncheck at the end of the day to be ready for the next day.

But, you know, I’m supposed to be finished with breakfast and all the morning meds (plus three full glasses of water) by 10 am. I just took the morning meds and I’m still working on the third glass of water and I’m an hour and a half late. I am trying to give myself the grace not to stress about that.