Wobble here, wobble there | Monthly Resilience Report: April 2021

I feel like I’m wandering through a patchwork of cactuses and bluebonnets.

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:

Each month usually has a general direction or theme that I can speak to; not so much April, however. It’s been a month of everything: healing, setback, haze, peace, struggle, stress, and growth. I’m not making a beeline from A to B, that’s for sure.

Despite the detours and the weird place I find myself today, I do have faith that I’m slowly making it through to where I want to be. But it’s going to take some time. Maybe this is the “adjusting to the new you” and “learning to pick up the shattered pieces of your life” phase that some AE survivors talk about once they’re past the worst of their symptoms. You’d think there’d be 1 year worth of pieces to represent the year it’s been since my relapse started; but somehow, it feels much closer to 6. How would life been different had I not fallen sick back in 2014? Not a particularly fruitful question to ask, but the mind does wander…

Sometimes the events of the past 6 years sits on me as a giant, overwhelming mess; other days, I’m grateful for every bit that’s happened. It’s been an all-over-the-map type of month. I’m going to keep doing my best to embrace this season as one of flux and transformation though, optimistic that this is just the hard emotional part you go through to get to the better days ahead.

One bright spot this month was seeing some fruits of my writing labor ripen. I published This is what it took to lift me out of an autoimmune encephalitis relapse, a story that took a lot out of me emotionally but has resulted in some meaningful conversations with those a bit earlier than me in their healing journey. My dark days lighten knowing that someone else has benefited from seeing my story, a unique privilege I wouldn’t now know had I never met AE.

As for my usual numerical report: this past week I’ve felt myself functioning at about 80-85% of my baseline. Earlier in the month, lower—presumably due to stress? I had certainly hoped I would’ve continued to inch upwards in my recovery; however, things do seem to be stagnating… I guess time will tell where things are ultimately headed.

In the meantime, there’s so many things I’d like to be doing with my renewed cognitive capacity; yet a dear friend recently reminded me that I’ve got to prioritize stabilizing my own health first. And that includes actively reducing stress, a nebulous factor I had never perceived as having a real impact on my health the past 6 years—that is, until the past several weeks. Or maybe the stress is merely highlighting a vulnerability from latent AE, threatening to rise up? I don’t know! No one knows right now! GAH! Ok. Stress scream released. Back to rebalancing the deep work with periods of self-care and tranquility. More to come in the weeks ahead…

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:

Leave a Reply

Your email address will not be published. Required fields are marked *

The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with a long-lasting 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.

%d bloggers like this: