(un)Diagnosed: Day 398, Week 57, Month 13: Making Progress


This month actually still looks a lot like last month, still very much good days and bad days, although some significant things have happened. The good days are better, and the bad days aren’t as bad as they once were. I have a new specialist, a neurologist. They say, oh, yeah, I DEFINITELY have dysautonomia! They added POTS. This gives me what has been appearing as an unholy trinity of diagnoses that have been cropping up among many of my friends and social media acquaintances: joint hypermobility (like EDS); mast cell issues (autoimmune and MCAS especially); and POTS (or other forms of dysautonomia). Yay, I joined the club? Or not so yay.

The neurologist had a list of things people can try to feel better, and which patients sometimes discover on their own. I was doing most of them already (examples: salt loading, increased fluids, sleeping with a raised head of the bed, taking breaks where I elevate my legs, neuro rehab, compression stockings, and more). It seemed to surprise them that I was already doing so many. Since I wasn’t doing everything, we’re adding the rest and doubling down on interventions which are low cost, low risk, and offer a big bang for the buck. Compression stockings are shifting from knee high to thigh high. Adding an abdominal binder, which you can think of as a medicalized corset. Even more salt (a LOT of salt!). And fluids. Specifically electrolytes. I’m up from a half gallon a day to a gallon, at least half of which is oral rehydration fluids (like Pedialyte, although I’m using TriOral). It’s amazing. It has really cleared out a lot of the brain fog. I have a fair amount of experience powering through brain fog because of having celiac, and I’m also pretty good at ‘faking’ feeling okay when I’m not. The idea that the tunnel vision feeling I have been living with will just vanish if I drink a pint of electrolytes? MAGICAL!

An example good day: With the brain fog cleared out, I could successfully do many of the things I’ve been struggling with. I could also better manage actually taking breaks appropriately instead of slipping into brain fog and hyper focus. I’m also getting better at recognizing when the brain fog is starting, and taking action to head it off, like electrolytes and raising my legs. Last Saturday was the best day I’ve had since before the pandemic started. I have for many years tried to follow the National Poetry Writing Month practice of writing a poem a day during April. Last year didn’t go so well, but trying again this year. Here’s an excerpt from the happy sonnet I wrote for last Saturday in my poetry blog.

“A day almost like beforetime, when I
could walk if I wanted and still breathe, twirl
as if music is lilting or play twister
and not fall. The luxury of an airway
uncluttered, muscles not withered, and hey…”

PF Anderson, Singing, #NaPoWriMo 2021 Day 10.

There are still bad days, too, and they seem to be triggered by a combination of things. We know that maintaining personal hygiene still seems to trigger crashes. Doing too much does also. Not taking breaks. Etc. Last week the inaugural COSMO conference happened, and I was on the planning team, so, yeah, I did too much and didn’t rest enough. I also had lab tests for the neurologist and to test whether the vaccines actually triggered antibody production, since having COVID didn’t. Crashes for me come in waves — there are immediate crashes during activity, delayed crashes at 18-24 hours after activity, and even more delayed crashes at 3 days out. I read about someone who has crashes at 5 days after their triggering activity, and that must be really hard to manage. So the trip to the blood draw and the extra COSMO activity were 2 and 3 days before the now weekly shampoo, and these three combined to ill effect. The good news is that boosting electrolytes helped reduce the impacts of that crash. Here’s my Facebook post from Sunday describing how that day worked.

"I didn't like seeing my friends. It wore me out. Everything was hard for me: having a conversation, focusing, not being tired. I had to prep before they came over, sleep and store up my strength." Image shows a grayscale pencil sketch of two young women talking while a third stands smiling in the doorway behind them.

Today I read PARENTHESIS by Élodie Durand. It was very strange to read. I don’t have brain cancer, but her description of her life feels so much like mine in some ways.

Yesterday was a good day. Probably the best day I’d had since before COVID19. Today was not a good day. The worst crash I’ve had in a couple months.

I felt fine when I awoke. Started a load of laundry. Took my meds and the first quart of electrolytes. By 9:30am the chills had started, but I hadn’t eaten yet, so kiddo helped me make a bowl of cereal, and I made myself eat it before I lay down.

By 10:30am I was back in bed, covered with the weighted blanket and a few more. By 11am I’d passed out. When I woke at noon I couldn’t talk or lift my arms. I tried, but I didn’t make sense. I couldn’t remember the words I needed. I couldn’t construct a sentence. I couldn’t ask for the help I needed. I would say the same word over and over, frustrated that kiddo couldn’t figure out what I needed. Later, when I could talk again, we agreed that the next time this happens he should record it to we can show the doctors.

A few weeks ago I started to see a new specialist for the post-COVID dysautonomia, a neurologist who has other #LongCovid patients and who specializes in autonomic disorders. He has added POTS to my diagnostic collection. He was surprised & pleased how many of the things they recommend I was already doing. So he bumped things up.

Some of the things he added: 8 grams of salt a day (that’s a lot!). A gallon of fluids, half electrolytes, half water. In a few weeks I have an appointment to fit an abdominal binder, which is kind of a medical corset, and thigh high compression stockings. He says these will all help with suspected pooling of blood in the gut and legs. He said the reason for the brain fog is that blood is actually not getting to the brain.

I’ve been finding the electrolytes are having an amazing impact. Drink a quart, and the weakness just fades, the brain snaps into focus, I feel more like myself. So today, when everything went away, I tried to get kiddo to bring me electrolytes.

Usually I just bottoms-up and guzzle a whole quart. Today I couldn’t lift the bottle. He had to get a small cup, pour some into it, help me with it. After the first cup, I could handle the second cup, with both hands. After the second cup, I could pour my own, and could finish the bottle.

So, that was noon. It was a couple hours before I could sit up without help, or stand up to go to the bathroom (because QUARTS of fluids!). I couldn’t read a book because I couldn’t hold it open.

I finished two quarts (yes, that’s an extra, but I seemed to need it today). And, voilà, I’m back! I could make a simple lunch. I can’t stand long, but I can get up and do short activities. Yesterday I did three loads of laundry, a load of dishes, and walked around the block and felt okay. Today, nah. Let’s not.

But I did get to where I could hold a book again. We use TV dinner trays to hold the pedialyte bottle, a cup, the book. I can prop the book up so it isn’t as tiring to hold. It was an amazing book. A bit gutting to have so much of it resonate so tightly.

And tomorrow, I’ll feel fine. How much you want to wager? Well, fine-ish. Enough to sit at a computer and people will think I look normal.

One response to “(un)Diagnosed: Day 398, Week 57, Month 13: Making Progress

  1. Pingback: (un)Diagnosed: Day 429 (14 Months, 61 weeks) Better, and Better, and … | Emerging Technologies Librarian

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