Every day I’m celebratin’ 🎵 | Monthly Resilience Report: February 2021

The landmark that I organized to be lit up #Red4WED!

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:

How did this month go?

Have you ever tried to compress ~10 months of life into a single month’s worth of time?

Things uh, get a little chaotic 😅

As this month draws to a close and I find myself rushing yet again to pull together a relevant “Resilience Report”, I find myself chuckling. The reasons for today’s last-minute-end-of-month scramble could not be more different than previous months.

Last year, the cause was usually due to a lack of innate energy and brain power; this month, I’ve filled my schedule to the brim with too many to-do’s, most of which I’ve actually capably managed. Well, I should clarify: it depends on what measuring scale we’re using.

Did I make up for all 10 months of my 2020 life lived on standby? No.

Did I make more headway than I could have ever imagined while dealing with an inflamed brain? Heck yes! No exaggeration—what I did in February 2021 would easily have taken 3x as long through most of 2020 while I was relapsing. While there’s still recovery left to go, I couldn’t be more grateful that I celebrated my birthday this month with the best gift of all: healing.

Now, for some AE-related highlights…

Where Are My Pillows Podcast

22 podcasts in 22 days. That was the challenge I set for myself in order to raise awareness of encephalitis in the lead up to World Encephalitis Day, February 22.

It turned out a little rough around the edges, particularly as most days were recorded on the fly and the narrative bounces around somewhat. Additionally, about a quarter of the episodes were recorded back in January, before my hospital stay/massive recovery.

But I left everything as is and without much polish, serving as a snapshot in time of what the beginning of 2021 has been like for me. It’s perhaps one of my favourite things I’ve done in the past year, mostly because of what it represents for me personally:

  • Recording short daily episodes, each 5-10 minutes long, would have been the type of task I’d need to organize my ENTIRE day around while relapsing. This month, it was something I crammed in on top of a series of other more urgent things that day.
  • Perfectionism (my general pre-encephalitis attitude) be damned. One goal with this challenge was to simply prove to myself that I can “show up” consistently, and I am happy with myself for doing just that! I had fun in the process, and learned to more readily embrace some of my perceived flaws.
  • It was devastating to lose some of my communication capabilities through the course of dealing with autoimmune encephalitis, even moreso because that’s how I used to make a living. I got paid to not only write, but to also flex my verbal communication skills as the Communications Manager for a real estate developer. To lose that, then make the decision at the top of 2021 to put something like this out on the internet before I knew I would recover (even if listening back to some of the episodes make me cringe, lol)—excuse the self-adulation here, but I’m proud of myself!
  • The feedback I received was quite positive, and I know it was directly meaningful to at least a handful of fellow AE warriors out there. Perhaps I’ll expand my voice and maybe video efforts to raise awareness in the future….

And now for the product: here’s a link to the podcast series here: Where Are My Pillows PodcastI discuss a multitude of things ranging from AE’s impact on my life, to dealing with doctors, to self-advocacy, to mental health.

A snapshot of some of the past month’s Instagram + podcast fun.

World Encephalitis Day (WED), WED Conference, and Associated Activities

The Encephalitis Society based out of the UK has been coordinating an array of awareness activities for Feb 22, World Encephalitis Day, since 2014. This was my first year taking part, and it blew me away to see how many others raised their voices on social media this year and went #Red4WED!  They put together a delightful overview for the occasion here: 22 Highlights from World Encephalitis Day 2021. 

There’s far more awareness out there about encephalitis now vs. when I first got sick in 2014, and the day’s events really emphasized that to me. To hear more thoughts including why I’m hopeful about the future of this field, listen to episode 22 of the podcast here: S1E22: Conclusion: There’s hope out there. | Anddd that’s a wrap on World Encephalitis Day 2021!

A couple days before WED, on Feb 20, five of the major encephalitis non-profits worldwide came together to host a superb conference with a mixture of patient stories and talks from experts. It’s incredibly heartening to see the quantity and quality of research groups world-wide who are studying encephalitis, some of whose perspectives I highlight in episode 20 of the podcast here: S1E20 2021 World Encephalitis Day Conference Highlights | Get ready for LIGHTS, CAMERA, ACTION on Feb 22!

This emotional post captures more of the spirit of the activities and my personal recovery this month, moreso than I feel I could do justice to in this report.

Where Am I Now?

As for my recovery details: I continue to experience gains after the plasmapheresis, IV steroids, and tocilizumab I received in January. There’s variance day to day, but I’d peg my capabilities at about 80-85% of my baseline level of functioning. Next month I should be receiving some maintenance therapy, as well as undergoing some testing to objectively monitor my gains. Fingers crossed I’ll also squeeze in some time for a more meaningful return to my blog writing, beyond these monthly reports 🤞

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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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