Autoimmune Encephalitis Recovery, Part 1: A Look Behind the Scenes of Emotional Breakdown

autoimmune encephalitis, sawtooth pattern of recovery

Meet the Sawtooth Pattern of Recovery

You’ve made it past the danger zone.

The one that left your mind spiralling down through reality into a freefall of darkness. The one that sent doctors scrambling to untangle your bizarre mess of neurological symptoms, before you were lost for good. The one that left your levels of consciousness so unstable, you’ve retained no recollection of the work performed to revive you.

You’ve been pried away from the precipice of eternal sleep. You have your autoimmune encephalitis (AE) diagnosis, you have your medications, and you’ve been wheeled from the hospital bed to the starting line of long-term recovery. Hurrah!

The starting pistol fires just as friends and family let out an enthusiastic cheer for your success. The only problem is, you fall flat on your face with the first steps forward you take.

It’s okay, you hear people assure you. You just survived a serious illness, and recovery is going to take time.

But after the first several weeks, it certainly doesn’t feel okay. You keep getting up, only to fall back down again. Some days you actually make it farther than you expect, raising your hopes that you’ve finally hit your recovery stride. Other days, you wake up far behind the line that you thought you remembered progressing to the day before. Days later, you finally crawl your way back to the summit you had briefly made it to the week before.

You’re on what you’ve heard others call a “sawtooth pattern” of recovery—interspersed with periods of standstill, backslides, and tentative advancement. It’s disordered and erratic, rather than the steady incline of improvement you once thought the word “recovery” conveyed.

The Challenges of Today

That’s all just a fanciful way to describe the general aftermath of autoimmune encephalitis (AE).

And that brings you up to speed, more or less, on where I am today. Actually, I should clarify that I’m a few steps beyond this; I recovered to ~95% after I first beat AE, then suffered a relapse this spring. So this is my “Round 2” of being in the post-Rituximab recovery zone.

Many days feel like I’m re-experiencing Round 1. Same symptoms, same setbacks, same doubts and uncertainty—just at an older age.

Frankly, I haven’t felt like writing much during the past few weeks. Scratch that—when have I ever felt like writing? Not since before my relapse, despite the trickling blog output from the past months that might suggest otherwise. I mean, a passing inclination WILL strike periodically—but die down as soon as I remember oh yeah, encephalitis crippled my verbal fluency.

Imagine starting a sentence and losing your train of thought before you can complete it. Every. Single. Time.

Imagine you’ve lost your natural grasp of grammar.

Imagine running around through a complex array of connect-the-dots just to string together the words of a sentence in a logical, linear fashion.

Imagine that it takes you up to an hour just to compose a single paragraph that captures the spirit of what your mind would like to convey.

All the while, the faint memory of your former career as a copywriter and communications expert stews in the background. This is not a particularly fun feeling for me to confront.

My natural tendency is to avoid writing altogether, to avoid the crushing reminder of former capabilities I have lost  have yet to recover. But when I’m feeling a little daring, I’ll pull up a blank page and see what words I can hammer out. It’s painstaking work, but satisfying once complete. Plus, kind comments, the knowledge that my writing is helping others, and encouragement provides additional motivation to keep at it 😉 .

thunderstorm, emotional turbulence

Let’s Talk Mental Health

Back to the past few weeks: I broke down on a few separate occasions, filled with utter despair over the current state of my existence. Generally I’m averse to writing at length about this state, because the energy cost of writing this type of post seems to outweigh the return I might get for it. I feel like I devolve into unproductive complaints about my condition, rather than writing something of value that others would want to read. Who wants to hear anxious, meandering ramblings about living through the pains and struggles of encephalitis?

Turns out: I do.

During one frustrated moment, I found myself typing something like “emotions of encephalitis recovery” into Google. None of the results spoke to me. Factual information written from a detached, clinical perspective exists; but I couldn’t relate with any of it on an emotional level.

Later, I realized what drove this search query: I just wanted to hear from another human being, who has lived through this experience, what it feels like to fall apart. To feel a little less like an intrinsically neurotic, flawed individual; and more like a human being whose emotional surface is being challenged by the depths of encephalitis. To internalize that I’m not alone in succumbing to the whirlpool of despair every now and then.

While I couldn’t find what I was looking for, my hope with writing this post is that you will. That unsteady, confusing, overwhelming gamut of emotions you’ve felt on your journey of encephalitis? I’ve felt everything along that spectrum, too. You’re in good company here.

The Emotional Breakdown

Please note that the next section is a peak behind my curtain of vulnerability into a land of emotional chaos. So please be kind 🙂 . If you’re in a delicate place, you may want to proceed with caution over the next 2 sections.

alone in pain, anguish, mental health

July 13, 2020, 1AM

Freaking out internally right now. Just laying alone but feeling heart beating fast in my chest, thoughts in my head aren’t even thoughts, can’t catch any train of thought, inept, just so unsure…what’s happening? Mind in a weird place, anxiety making it worse, lost in spirals of confusion and wondering if I’m relapsing hard or just WTF is happening in my head.

Despair. Not sure where I really am cognitively, things being taken away random at any moment, little faith in where I’ll be tomorrow; if I’ll be okay or what my mental capacity even is….

Existence is exhausting. Everything unravelled. Scared to exist. Rather than a “nothingness” numbed feeling, striking negativity and despair. WTF is happening to me.

This isn’t actually what appeared in my journal that evening; but it’s a rough approximation of what I imagine would be there, had I been able to muster the energy to type and translate the amorphous activity in my head into actual words. Not pretty, with lots of half-baked half-thoughts, with an undercurrent of suffering overlaid upon a foundation of generalized disorientation. Less dramatic, in part due to how slowly the feelings took grip—over a period of ~20 minutes, versus the seconds it takes to read the entry. But enough to terrify me to an unusual degree.

I ended the night with 5mg of melatonin, attempting to retreat into sleep as quickly as my mind would allow.

That’s not a coping mechanism I would have ever thought to indulge in, pre-encephalitis. **Note that I DO NOT condone this; please don’t look to me as a healthy example to follow here.** I don’t run away from problems, but I admit that shadows of that tendency have crept into my life now and then when the energy burden of AE has maxed me out. Usually I just let my mind rest with relaxation through something like meditation, yoga, or binging on a show.

This time, the element that pushed me over the edge was recognizing that I couldn’t track the evolution of my thoughts, whether logical/coherent or otherwise. An unwelcome stream of incoherence I can at least tolerate (in private, at least); nonsense and I are more than well-acquainted. Instead, it was like any step forward led to the disappearance of the ground immediately behind me. Glance backward and nothing was there.

Every ten seconds felt like the moment when you wake up feeling groggy, before you can even think to orient yourself in time and space. A new wave of disorientation washed over me as soon as I became aware that the disorientation existed in the first place.

Maybe I had some sort of panic attack? I don’t know. I didn’t have anxiety before this illness, it’s usually mild to non-existent, and it’s never been given more than passing attention by my AE docs. And I’m okay with that. Not to detract from the significant and debilitating psychiatric issues that can accompany encephalitis, but in my case it’s my cognition that I’m focused on trying to regain in recovery… huh, maybe that’s why I’m struggling to keep myself from overly intellectualizing a post aimed at providing a raw look into the emotional ugliness of this illness 😶 .

Encephalitis at its Worst

Let’s return to the headspace of AE-spawned mental anguish.

A study from earlier this year concluded that the high occurrence of pathological tearfulness after limbic encephalitis “reflects abnormalities in networks of emotion regulation” [1].

Overall, encephalitis causes inflammation in areas of the brain, such as the hippocampus and amygdala—which are involved in processing and experiencing emotions. So it’s not surprising if your feelings have gone haywire post-AE.

For me, it feels like encephalitis has spattered emotional chaos everywhere. The internal ups and downs often lack correlation with external events or inputs, the way you would roughly expect them to for the average healthy person (and in my own life prior to 2014). It’s not all bad though, and the lability is something I’ve learned to manage.

Things get nasty, however, due to the uncertainty involved with AE recovery:

  • When are your medications going to kick in?
  • What deviations from what’s expected (and boy, will there ever be elements of the AE experience you don’t expect) are cause for concern?
  • How soon do you make the call whether or not your treatment plan needs to be readjusted?
  • How can you tell if an uptick of symptoms is a relapse, or just natural fluctuation?
  • How do you know if your doctor is treating your symptoms aggressively enough?
  • When will you feel “normal” again?

There’s a lot that weighs on your mind, with a lot more questions than answers. Simply put, the course of recovery is ill-defined. And it sucks!

How do you move forward in life when the field ahead of you is constantly evolving? Most people do not need to wake up guessing which mental and physical faculties will be available to them that day—let alone consider whether they’ll encounter wild variations variations each hour. Even if they’re not in the best condition, most have the relative ability to know what to expect from their raw capabilities over the short- to medium-term.

The implications of this uncertainty makes thoughts of the future incredibly distressing. Do you accept that social invitation? Take that trip? Apply to that college program? Aim for that career?

You can hope for the best, and tell yourself you’ll simply make adjustments as setback comes along; but if you’re like me, you’re going to become worn down by how flaky AE makes you.

In the past 6 years of this illness, I’ve had to drop out of a competitive university program twice, bail last minute on friends—countless times—due to unpredictable fatigue, pull out of commitments where people were relying heavily on me, and try to explain away inconsistent job performance. It can become a discouraging, cruel dance of ups and downs that shapes your behaviour into one of avoidance, unless you actively work to override it.

General long-term goals—such as resuming my career and having a family—remain;  but zoom in closer, and the contours of the map change with each glance.  Rolling hills one moment; a desert of quicksand the next; a sudden, enduring mountain; followed by the occasional lake of restoration. I’m constantly needing to reassess the specific action steps required to traverse through unpredictable terrain.

It’s comical just how far the uncertainty stretches the depths of negativity, and amplifies the spirals of anxiety. I can usually catch this as it unfolds and temper the barrage; but sometimes I’m powerless to do anything, other than let the feelings run their course. At my emotional worst, the mental chatter becomes:

  • Why is today so awful? Everything seems random. I feel like a foreigner in my own skin.  Why should I even trust my body anymore?
  • Every effort ends in disaster. I feel like my life has become a disaster. Why is everything a disaster? What is the point of all this struggle?
  • My brain is just moulding away into nothing. I can’t do anything with it. I don’t know how I’m supposed to deal with this anymore. My life is over.
  • Why do I feel this way? I know I’m being irrational. I know festering in my negative emotions isn’t doing me any good. But why can’t I stop? Why do I feel so out of control?
  • I guess shit happens; then you just die.
  • FML I’m lost and have no idea what to do.

The anguish swirls around and stays awhile, but does eventually leave. If you’re reading this while in the midst of emotional crisis, that’s the one takeaway I’d like you to remember. This too shall pass.

pretty sky, rainbow, recovery, this too shall pass

Coming to Terms with Recovery Turbulence

I wrote this post in small chunks over the past week—most while in a much better state of mind than the agonizing evening that prompted this. So I’m not sure that I captured the raw ugliness of having my internal domain shattered by the aftermath of encephalitis.

I’m actually tempted to reword the last part of the previous sentence, as the phrasing strikes my currently serene mind as too embellished. But I know the games that encephalitis plays. Doing so would be doing an injustice to the topic.

Earlier on in my illness, before I was diagnosed, I’d have remission periods where I’d look back and think, “it really couldn’t have been that bad, could it?” In these brighter times I basically gaslit myself into thinking that I had a weak character—one that had problems handling the normal demands of everyday life, the same ones that everyone else has to. But the extreme cognitive dysfunction kept recurring. And the accompanying despair would roar back with a vengeance.

Between going through this cycle countless times and speaking to fellow AE survivors about recovery, I now know not to dismiss the severity of AE-induced distress.  Not everyone gets it so bad, but some of us legitimately do. In my case, I’ve learned it’s better to let it wash over me and pass—rather than run away from it in denial, and have it chase me around instead.

I try to look at these emotional challenges as another symptom of AE, rather than a reflection of my character.  Sometimes you can alleviate them; other times you just have to endure them. 90% of the time I feel somewhere between neutral and joyful, so I’d say I’m doing pretty okay. But If the negativity predominates your disposition, there’s no shame in exploring what tools a mental health professional might have to augment your journey of healing.

In short: don’t beat yourself up if you find yourself incapacitated by negative emotions. It’s a normal feeling that many encephalitis survivors go through. And if you’d like to talk about it with someone who knows exactly what it feels like, join an encephalitis support group. There’s plenty of them around.

———-

Find Autoimmune Encephalitis Recovery, Part 2: The Day-to-Day Emotional Challenges here.

Sources:

  1. https://n.neurology.org/content/neurology/early/2020/01/23/WNL.0000000000008934.full.pdf

2 Comments

  1. Donna
    August 23, 2020 / 6:58 am

    Good morning, thank you for writing this article.
    My long term boy friend has been diagnosed with this.
    I want to support him as best as possible to help him in recovery and just us learning to live together and understand what he experiencing.

    I pray for your recovery

    Donna

    • wherearemypillows
      Author
      August 23, 2020 / 2:28 pm

      Thank you for your comment and kind thoughts This illness is so tough on not only our bodies but on our relationships, too. I am so grateful for those that exercise compassion, patience, and empathy during the tough times and I sense that you are approaching the situation with your boyfriend with this type of attitude. That’s a great foundation to heal with. May he respond well to treatment and find his footing back to a good recovery ❤️️

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