Just meandering through the marathon of chronic illness life | Monthly Resilience Report: July 2020

 

chronic illness is a marathon
Sometimes I use stock images. Because my own personal photo files are a mess. Much like my meandering travels through adulthood with encephalitis.

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Maybe you’re just here because you’ve heard me complain about relapsing, and want to find out if my Rituximab has kicked in yet. In that case, skip down to the last section.

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Once upon a time, I got paid to write.

But these days—after brain injury—writing and speaking serve a different function: they’re a barometer of how well my brain is doing.

Can I hold my own in normal conversation? Do I end up quiet and flustered? How’s my grammar? What’s my energy level after an hour of writing?

It’s been another few weeks of treading far from baseline, before my autoimmune encephalitis (AE) diagnosis. Don’t get me wrong—I’m grateful to have healed enough to be able to convey this. At my worst, spells of catatonia rendered me fairly noncommunicative. But I state this because it’s hard to judge progress without making an honest assessment of where I am today. We’ll expand on this in a later section.

As a consequence, it takes me several days of effort to write a single post. Between having recalcitrant standards as a former copywriter and now dealing with post-encephalitis language issues, it’s been hard for me to muster the energy and willpower to blog consistently. Yet I want to.

So here’s my solution: monthly updates, which I’m dubbing “Resilience Reports”, where I’ll be attempting to let my hair down a little and meander.

Read a transparent account of life with autoimmune encephalitis as it unfolds. Find some ideas for living well after brain injury. Realize you’re not alone. Indulge me as I experiment with a less polished voice. Forgive me if I get a little unhinged.

This first month is a test-drive, but I anticipate publishing a post in this style at the end of every month. And with that, let’s see where this thing goes!

canada day, fireworks
Once upon a time I took this photo, in what feels like a far away land from where I exist currently. AKA the best place to be on July 1 each year. AKA one of many places blocked to Americans right now. AKA home.

Where did I start the month?

First, let’s bring you up to speed.

My post-encephalitis OCD brain would be happier if I had started these Resilience Reports back in May. That’s the month I received my Rituximab treatment, after relapsing from seronegative autoimmune encephalitis (AE) in March. You can read about that here.

Word of advice: have a contingency plan if everything goes wrong shortly after moving across the continent. I mean, I’m not beating myself up for failing to predict that a worldwide pandemic would sweep the world and stymy my access to healthcare. But for throwing caution to the wind and believing I achieved permanent recovery, only months after reaching stable condition? Maybe just a little… But it’s more complicated than that. You’re not really inclined to look backwards once you finally “feel like yourself again” after being sick with 5 years of a mysterious illness.

But here’s a quick summary anyway, for the sake of clarity:

Come the beginning of July, I had pretty high hopes.

The first couple days of the month were positive, leaving me hopeful that I had reached a turning point in recovery. Maybe that was just the metaphorical liquid courage afforded to me by my maple syrup roots—there’s never been a Canada Day (July 1 🇨🇦 ) where I’ve been more proud to hail from the land of beavers, snow, loonies, and ketchup chips. Not long after, I had some of my worst days since receiving May’s Rituximab treatment.

Encephalitis has a funny way of knocking me off my feet when I’m not expecting it. More about that here. I went from pushing ~60-65% of my baseline levels of functioning at the start of the month, to ~40% at some low points (note that these are pretty loose estimates rather than some tidy, measured calculation).

pandemic times, social distancing, coronavirus, covid19
My 2020 in a single picture.

What did I do?

On keeping a journal

I wouldn’t remember much of what happened if it weren’t for keeping a journal. Partly due to the monotony of quarantine life and partly due to worsened memory post-AE, it’s become a stretch for me to remember the trivial day-to-day details of the past several months. But it’s important to keep a record of the things that go on when you’re in recovery, to chart progress and identify patterns of which treatments and behaviours result in which outcomes.

I would HIGHLY, highly recommend doing this, even if it’s only to document fluctuations in symptoms. It helps with the inevitable moments of brain fog at doctor’s appointments, and guiding the course of your treatment plan.

Daily habits

I have a daily checklist of 10 things on a Trello board that I aim to do everyday. The past couple months it’s included: journal, smile, visualize my ideal future, take my supplements, read for 20 minutes, and some others.

Yes, these are super basic things that in an ideal scenario I would accomplish without needing to bat an eyelash. But this system really, really helps me. When you have executive functioning issues, it helps to have the single directive “just read the checklist and accomplish one thing at a time” instead of needing to think through “what am I supposed to do now? How would ‘normal me’ take care of myself again?”

Also, I have much less going on now compared to the type of schedule I had when I was healthy. Yet it’s interesting how the days can pass by quickly when you’re without constraints, and especially when your brain isn’t functioning properly. My sense of time is warped. Having a checklist and knowing that “even if I felt like I didn’t do much today, at least I kept up with my habits” helps to provide structure to a life that otherwise feels like a mess.

Generally, my level of functioning tracks to how easily and how quickly I get these habits done. Sometimes I realize it’s 10PM and I only got to 3 items. Other times I can be finished everything by 2PM. In any case, I think I’d feel like more of a slug than I already do, if I didn’t follow this system. Not that being a slug is strictly bad. Sometimes that’s what you need to allow yourself to be, in order to achieve healing.

Yoga

This new habit has firmly earned a spot on my Trello board! My husband and I ordered yoga mats last month as a way to keep us active during quarantine life. I had somehow forgotten how restorative yoga has been to me in the past (read more here), but I am glad to have reawakened the practice.  It’s humbling to reconnect with my body and remember that many parts of it are still wonderfully mobile, even if my mind tries to convince me otherwise.

It typically takes me awhile to get going in the morning and shake my mind awake. Training myself to turn on Yoga with Adriene on YouTube has helped change that. Even if I just lay there inactive for the first few minutes, I find that her kind, unpretentious soul gently sparks me awake. Maybe it’s the innate desire to mirror who we see—my body starts thinking, “hey, I want to do that too,” and I find myself moving from the couch onto the yoga mat.

I’ve been following her 30 day yoga series titled “Home”, which has been a relaxing and non-intimidating way to get into the habit of moving my body in the morning. Occasionally I feel like doing more, and find more YouTube videos from her or other teachers. There’s something nice about the feeling of making linear progress though, which is why I keep returning back to her series.

Texas Children’s Hospital Autoimmune Encephalitis Family Day

For the past 2 Julys, the Texas Children’s Hospital in Houston has held an event that brings together those touched by AE. This year the event moved online to Zoom, and included presentations from a handful of healthcare professionals involved with managing recovery in the pediatric population.

Though this illness hit me in adulthood and some of the discussion did not directly apply to my situation, it was nice just to have something to put on my non-existent social calendar. Haha, just kidding 😉 . But only sort of.

AE is an isolating disease in part due to its bizarre effects on cognition and behaviour. It can’t be described in a tidy, all-encompassing, easily understood way. That tendency lends itself to withdrawing from social situations involving people who don’t know you well—at least for me.

I think if this were early on in my illness, I’d want to run away from reminders of AE and not look back. But I’ve spent nearly 6 years with this unreliable brain. I’m in a much better spot now that I’ve been diagnosed with seronegative AE (last year) and have a sense of what recovery methods are helpful for me, but I’m still left without the certainty of a future free of recurring impact from encephalitis. So I’ve tried to head in the other direction during the past year—embracing AE and its indelible impact on my life, along with the community that comes with it.

So far, so good.  I mean, maybe I’ll feel differently a few months from now and find myself steering away from this mindset. But as far as I can tell, this seems to be a reasonable strategy for buffering myself against the threat of a radical encephalitis earthquake, which have historically toppled my emotional state. Finding friends in the AE community and integrating the understanding that AE is part of who I am (without letting it become my identity) has given me a sense of internal peace that was sorely lacking just a year ago.

Which isn’t to say that I’m a calm cucumber. I still have times of existential instability too, but they don’t shake my core quite as profoundly.

One thing I found myself thinking during the AE Family Day event: whoa, there are medical centres with healthcare professionals working in TEAMS to bring patients back to good health? Not a disparate patchwork of individuals you have to hunt down yourself—but neurologists, rheumatologists, rehabilitation specialists, psychiatrists, and psychologists TOGETHER? How ingenious and groundbreaking!

That might be a bit sensationalized; I’m guessing parents still end up intimately involved with steering the ship of their child’s recovery process there, expending considerable energy to advocate in order to achieve the best outcomes. That’s just what this illness demands. Still, it offered an exciting glimpse into how progressive centres are starting to manage this disease.

It left me daydreaming about a future where AE is given the appropriate care and attention it deserves, one where patients and caregivers can focus on recovery from the disease itself instead of being sidetracked in recovery from medical trauma. Moments like this fill me with a lot of hope for the future of this field.

The discussion and chat during the event reinforced to me how many families are being challenged by this journey. But it’s inspiring to see how resilient and strong this community is becoming, helping to motivate me during this time of relapse and continue to provide a patient voice to this illness.

On just existing

I mentioned earlier that this past month I experienced some of my worst days since May. Those days really threw me off, since they occurred right around the time I expected to be seeing gains from Rituximab.

I ended up cranking the dial up on my idea of rest after this happened, completely freeing myself of expectations for the next 5 days and allowing myself the full amount of sleep + sideways pillow life that I craved. This meant some days of getting up past noon, then falling back into slumber for a couple hours—sometimes when I hadn’t even spent a couple hours already awake. It also meant not falling asleep until well past midnight every day.

Past me would have felt guilty about this. This time, I couldn’t bring myself to care or judge myself. I just felt emotionally depleted and wanted to numb out a bit, self-soothing my naturally productivity-minded brain with the justification that “maybe my body just needs time to exist, with zero stress, in order to recover.”

Was this helpful? Hard to say. I wish I could run a control on myself, seeing how the past version of me that would have kept trying to keep up with daily habits + goals would fare. There’s so much random variation in my levels of functioning that I am wary of drawing strong cause and effect associations based on single instances.

But I don’t regret it. And by the end of the 5 days my body was longing to return to its natural habits and engage in more day-to-day activity, rather than wanting to continue to slug out. 

slug life
If you want to be a good sport, you’ll humour me as I tell you about the trials and tribulations of my slug—not snail—life. Please refrain from reminding me slugs don’t have shells, or I will have a lethargic spirit animal identity crisis. I got the memo too late in life.

What did I think about?

This post is getting longer than I expected—and I already editorialized a lot above—so I’ll try to make this section shorter.

Neuroplasticity

I’ve been slowly learning more about the brain’s ability to undergo change and rewire itself. Books such as The Brain’s Way of Healing by Norman Doidge have provided a nice primer on the subject.

I have a hard time remembering the material I consume, so I’m not sure whether these thoughts stem directly from the Doidge book or a different source. But in a general sense, learning about the expanding field of neuroplasticity has given me much food for thought as to how to heal from brain injury.

I used to think of my mental functioning as being entirely at the mercy of my biological state. Indeed, I’ve gone through periods where it seemed regardless of how much I attempted to take healing into my own hands, very little could budge the needle. Eating paleo for ~6 months, engaging religiously in exercise, and stints of meditation seemed to amount to nothing. I would continue to worsen.

In hindsight, I think my body was just too far past the tipping point for these complementary measures to have an impact. They were like trying to poke a walrus awake with a chopstick—ineffectual compared to the enormity of what you’re up against. The root of the problem had grown too large (5 years large) for anything but heavy-hitting medications.

With the belief that I’ve halted disease progression with Rituximab and the knowledge that brain structures remain dynamic over your lifetime, I am more convinced of the impacts of things like emotions, stress, habits, and self-discipline on physical healing.

Let’s consider emotional state. Live with a chronic illness for several years, and you can get to a point of convincing yourself that misery is tolerable. Negative emotions can become so continuous and familiar that instead of confronting them, you let them set up a permanent residence. Or you’re so focused on getting through to the stage of biological renewal that you tell yourself the emotional healing can wait. 

However, research is mounting to indicate that this is a false dichotomy. Changes in stress, belief, emotions, and thought pathways seem to impact how your physiology functions, and not just in a tangential way. Your emotional landscape turns on DNA pathways that impact your body on a cellular level. As such, my interest has been renewed in things like yoga—things which help promote inner peace and healthier modes of mental existence.

I’m still early on in understanding how the mechanisms of neuroplasticity work, and wish I could speak to them here with greater conviction. But I suspect I’ll write more about neuroplasticity and what I learn in a future blog post.

Finding my recovery toolkit

On days of greater lucidity, I’ve been trying to think through strategies I can use to augment my wellbeing while my autoimmune system corrects. I really like the following quote by James Clear (author of Atomic Habits):

“You do not rise to the level of your goals. You fall to the level of your systems.”

Currently I’m working on creating “recipes”, which take away some of the need to rely on my varying levels of executive functioning. I alluded to this above: I use a Trello board extensively, for much more than just habits. Every day gets its own list, with a list of small tasks I hope to accomplish. At the end of the day, the untouched tasks are evaluated, with some being reassigned to a day in the future.

I forget to do too many basic things without this system (like start our noisy dishwasher in the morning while my husband is still sleeping and can’t complain 😁 ). It’s hard to imagine life before I used Trello boards—maybe I’ll feel differently once I recover and have my full executive functioning back. But these days, it helps to batch the executive functioning brain work together; the rest of the time, when I’m flailing about without much internal direction, I can rest assured by knowing all I have to do to get back on track is visit my Trello board.

Taking this systems thinking further, I’ve also been evaluating what simple changes I can implement to create a more recovery-friendly environment. This is a good idea in any scenario; but in particular, when it feels like you have a post-AE brain that makes you more sensitive to what’s going on around you. The emotions of others impact my internal environment more, as does general atmosphere, sounds, and lighting. Or for yesterday’s example, having to listen to Capital One’s hold music. I found the easygoing, ambling nature of it so perplexingly delightful I now keep humming it, much to my poor husband’s chagrin.

So I’m more careful about what I let into my awareness, and more critical of what I am “programming” my body with. I’m putting a more concerted effort into optimizing my inputs for functioning cognitively and emotionally well.

Obvious things are suddenly not so obvious with AE. So I’ll list some specific examples of things I now do:

  • Open the window shades wide and leave them open the whole day. My body feels better with warm, bright lighting conditions.
  • Stand outside on the patio when I first wake up, to take in some natural light and look out at nature.
  • Use an ergonomic desk setup. I didn’t realize how much happier my neck would be with a laptop stand to elevate the screen to eye level, and a cheap bluetooth mouse which is easier on my hand.
  • Use a cheap bluetooth keyboard. This gives me the flexibility to write from a comfier position than sitting upright in my chair.
  • Keep my desk clear of clutter, to prevent adding clutter in my mind through osmosis.
  • Make playlists of videos on YouTube, organized by the way the video makes me feel. For example, if I want motivation to write, then I’ll watch a motivation playlist. If I need to feel less anxious, I’ll watch a different playlist geared at promoting calm.
  • Pikachu makes me happy. Lol. So I have not one but TWO bright Pikachus stuck on the wall above my desk.
  • We’ll stop here before I embarrass myself further. Pre-encephalitis me would be cringing.

pikachu is the best
Here’s the Pikachu that jumps into the dried wedding flowers behind my laptop. Why yes, I AM a grown adult. At least by chronological age.

Where am I now?

The other day I realized “wow! I haven’t started my morning off by reading Reddit for a few days.”

Not that there’s anything objectively wrong with starting your morning that way—but in my case, that inclination tends to correlate with being more on the dysfunctional side. Instead, I’ve felt like getting my body moving with yoga as early as possible, and indulging in less mindless tasks than I did before. Progress? I give it a hearty “maybe!”

If Rituximab recovery Round 2 were to unfold in the same manner it did in round 1, that would have meant experiencing noticeable and significant remission in cognitive symptoms mid-month. Instead, I had the breakdown I wrote about here.

Whereas in Round 1 I knew recovery was occurring between 7-8 weeks post-infusion, at the time of posting this I’m now ~10 weeks past Round 2 treatment without a definite sign of remission. However, I THINK there’s some early signs (such as the Reddit one) indicating that this ship is starting to course-correct.

For the past week my mind has seemed a tad sharper, words are coming a bit easier, and my memory seems a bit improved. In conversation with my best friend she remarked “you’re talking faster, and sound more with it.”

What does that look like in less hazy terms? Well, rather than fluctuating around 50-60% of my baseline levels of function (like in May and June) I’d peg the fluctuations the past week between 65-70%. Again, this is a messy estimate and really depends on which snapshot in time and which dimension of cognition we’re looking at. Still, to me those numbers mean the difference between losing hours down the drain, and steadily chipping away at small tasks that add up to attaining meaningful goals.

All in all, it’s been 4 months of having consistently sh*tty cognitive functioning. I’ve experienced so much in the past 6 years that I hesitate to call things one way or the other just yet; but it’s been invigorating to notice these recent spikes in brain activity. I’m optimistic.

Glimpsing what it’s like to feel normal again: that’s a solid win that I’ll take and (carefully) run with. Afterall, that’s the type of thing that fuels the gas tank when you’re enduring the marathon of chronic illness life.

Liked this style of monthly posting? Didn’t care for it? Let me know in the comments below or on Facebook, Instagram or Twitter.

2 Comments

  1. Jo
    July 28, 2020 / 2:51 pm

    [removed]

    • wherearemypillows
      Author
      July 28, 2020 / 2:57 pm

      I am not sure what accounts for this, and wasn’t aware that any were going out. Did you follow me with a wordpress account at one time? Can you unfollow?

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The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with chronic illness. It is for general informational and entertainment purposes only, and does not serve as a substitute for consulting with your own healthcare professionals or conducting your own research. It is not intended to serve as medical advice, or to be used to diagnose, treat, cure, or prevent any disease. While every effort is made to provide accurate information on the subjects discussed, no responsibility is assumed for any errors or omissions in the content. Always seek the advice of a qualified healthcare professional to assess and guide your medical care.

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