A Day in the Lyfe: Symptoms
Today provided me the unfortunate opportunity to document "a day in the life" of chronic Lyme disease.
It starts with waking up more times than usual during the night. Up until the last few years, I was a very sound sleeper and, once awake, I was thoroughly awake. On days like today, sleep comes in fits and starts, especially towards morning. I wouldn't characterize this insomnia as "extreme," but for me it is out of the ordinary.
I fall back asleep quickly, but with each awakening there is a growing awareness that something is "off" - I am more tired than I should be for that time in the morning, and my brain isn't snapping out of its fugue. The world is hazy, and the prospect of trying to move from bed is like trying to throw off a weighted blanket with jello muscles.
There's a light headache behind my eyes. My sinuses are pressurized and sensitive to touch.
Once out of bed, I feel nauseated and a full-body ache. I exercised yesterday, so there is some soreness in the mix, but that's distinct from this type of tense, clenching nausea in my gut and chest. My skin is sensitive to the touch, and I'm cold, so I throw on my standard fleece-lined hoodie. I sway when I stand because my body has lost some of it sense of equilibrium and it's more effort to hold myself upright. In the past, I've measured the drop in blood pressure that comes from standing on days like today.
I get the birds up, feed them, and dig in to my cornucopia of pills and supplements. I force warm saline water through my sinuses to ward off sinusitis.
I have no appetite in the morning, so I skip breakfast. I'm mentally evaluating what tasks and meetings lie ahead for me in my job, and whether I can accomplish those. Thankfully, today I only have a one-on-one with my manager, and I can manage that. God's already demonstrated to me more times than I can count that he's taking care of orchestrating the events of my life around my illness, so I don't need to worry.
The birds are screaming now, and there is a physically unpleasant quality to the cries, as though they are undergoing an alchemical reaction with the blood in my ears to produce a swarm of bees in my brain. Light causes discomfort to my eyes, so I turn off all the lights I can.
I'm trying to think about how to approach the day, strategize what I'll be able to accomplish, but I'm fighting to keep the eyelids of my brain open. I probably look like someone who's falling asleep where they stand but, from experience, I know that I couldn't sleep right now. I'd just lay there in a half-awake state, meditating deep in my soul - the only layer of me that can still function normally.
On a hunch, I check my temperature: 100°F. The low-grade fever is common, and I suspect is behind a lot of the other head-centered symptoms.
Possible reasons I feel this way:
I exercised yesterday for the first time in several months.
I've been ramping down my supplemental hydrocortisone. I'd increased it while battling COVID-19, but since I've cleared the majority of those symptoms, I'm working back down to my baseline so I can up it again during the next infection.
I've had a lot of exertion over the past couple of weeks as I've devoted a lot of time and mental energy to working on the blog.
I wasn’t very good about maintaining a low-carb diet over the past few days. We ate Thai takeout (lots of rice), and had leftovers for the following couple of days.
My symptoms move in cycles that do not always seem to be clearly tied to particular events or activities. For example, I felt poorly on Sunday, not so much yesterday (Monday), but I've often noticed it takes around four days to come back from a crash.
As a masterful hedger of bets, I'm spreading my money across all five, with an emphasis on #1. It's part of the reason I've held off exercising as long as I have: I'm not totally sure how significantly it impacts me, but evidence suggests that it's one of the heavier-hitters.
Writing is a lot harder today, which does complicate the attempt to "write a blog" about the experience of PTLDS. I struggle to keep my brain on a train of thought long enough to come out with a fully-formed sentence. Typically, descriptions of things just parade right out of my mind, almost unbidden. These sentences are hard; I'm having to start and restart 4-5 times, lose my train in the middle, hop back on, and will myself to focus long enough to finish. It's easier when I'm writing about things that I understand instinctually. If I'm trying to describe something that I haven't previously put words to, or am exploring conceptually for the first time, then it's like pulling a stuck shoe out of a bog.
I'll stop for now, but it's been fun. Maybe we'll do this again someday far too soon.
