Bumps in the Road | Monthly Resilience Report: March 2021

This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

This time, the trainwreck ain’t encephalitis!

All things considered, I reaaaaaally don’t have much to complain about.

That’s one major advantage of coming out the other side of a major medical issue as a young adult: recover, and the magnitude of most life issues dramatically diminishes compared to how you might have perceived the same life issues had you never gotten sick at all. Your baseline level of gratitude increases. After being embroiled in a multi-year fight to gain back the primary apparatus with which you experience the world through (i.e. your brain), most conceivable first-world problems pale in comparison.

At least, that’s the story I’m telling myself this fine spring evening 😶

It’s my usual rush to crank out my end-of-month Resilience Report, but this time it comes amidst a sea of personal chaos (can we consider it progress when the state of my health is not my primary concern, for once in the past year? 😅). Turns out my ambitions to get back to blogging will be delayed a little while longer yet.

Despite my earlier posturing, the fact of the matter is that humans are messy creatures—and I’m no exception.  The last thing I want to be doing is complaining, when I’m keenly aware of the good fortune I have of even being in recovery from autoimmune encephalitis in the first place. How many people out there are desperate to see themselves or their loved one experience the level of brain health I’m enjoying these days? Lots; I know. Your direct messages and the conversations I hear in AE support groups demonstrate as much.

But it’s been an exhausting month. I’m run down. And with that, I’ll stop publicly yet cryptically beating myself up for struggling through some challenges and simply vow to do better next month. I guess that’s how you say you’re struggling with your mental health, without outright saying you’re struggling with your mental health. Really though, I’m going to be fine. Even if I don’t sound that way right this second.

Speaking of exhaustion…

My sleep hasn’t been great. That’s the one encephalitis symptom I’ve been actively struggling with since my hospital stay in January, and it’s impacting my general functioning more than I’ve appreciated in the past. Whether that’s because it’s receiving more of my attention now that my other symptoms have decreased OR because it’s legitimately worsened, I’m uncertain.

Fresh out of my hospital stay, the odd sleeping pattern was hardly notable. Waking up in the middle of the night and getting up after 5-6 hours of sleep was fine when the 5 days of IV steroids were fresh in my system, providing me with an energy boost. I woke up energized through February, with energy to carry me through the entire day. Now, most nights I wake up in 3-4 hour intervals and get up feeling unrefreshed after maybe 6-8 hours of sleep, occasionally needing to take a nap mid-day. That’s a pretty loose generalization though; it varies depending on the week.

When I type that out, it really doesn’t sound that bad… and it’s not. It’s quite manageable overall—just not my ideal state. Prior to 2014 when I first got sick, I’d regularly get 5-7 hours of deep sleep and sustain relatively high alertness throughout the day.

Turns out sleep disorders are pretty common in encephalitis, as this recent paper discusses.

While I’m not claiming to have a sleep disorder, I do want to note that sleep issues are currently a lingering effect of my AE in order to provide concrete details about my recovery progress. I know it’s still early in the game and I’m optimistic for improvements down the road; but for now, I do feel that the cumulative effect of worsened sleep is slightly dampening my cognitive stamina and mental sharpness through the day.

Where am I now?

My cognition and mood regulation have remained in a pretty solid place, inching upwards slightly since last month. Again however, the sleep issues impair some of those individual capacities… as does the underlying feeling of emotional exhaustion.

Overall, I’d say I’m functioning around 82.5-87.5% of my baseline levels of functioning. The best I’ve been at in over a year—but still room for improvement! This upcoming month’s efforts will be geared towards taking steps to improve my mental health, which I imagine will bump those percentages up even higher. I could use some good wishes, so feel free to send em’ my way if you’re up to it 🙃

This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

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