Thoughts on Acceptance, Recovery, and Finding Quality of Life

Photo by the author - orange, yellow, and brown autumn leaves are seen on green grass

As I write this, I’m fighting through layers of grief and embarrassment as I grasp awkwardly for accurate words - like a toddler might thrust their entire clumsy body through the sticky heat of a dark summer night, trying to capture a single elusive firefly with swooping, open arms. Finding words is hard especially on days I have worked or had big exertions, and trying to capture the phrases I intend to is an uphill battle I often lose or forfeit these days. It’s taken probably 6 writing sessions over 4 weeks to finish this.

I’ve been having a rough Long COVID flare for awhile, probably the worst I’ve felt since my post-reinfection setback about 18 months ago. It’s been so bad that my Long COVID specialist asked me at our recent appointment if I think I could have gotten reinfected again. We decided this seems highly unlikely due to limited exposure and for a number of reasons I won’t get into, yet it’s also impossible to rule out since 49% of COVID cases are asymptomatic. Despite there being no evidence of an acute infection recently, so many of the telltale Long COVID/post-COVID symptoms have been in rare form - including feeling like my body’s battery is never more than 30% charged, my nervous system in overdrive, and my brain processing in slow motion while the pace, volume, and demands of the world just keep growing.

This flare is also landing really hard. Like the setback after my reinfection last year, it’s coming after a period of improvement where I started to feel almost human again for a few months. Not nearly 100% my pre-COVID self, but maybe 60% there instead of the 30-50% capacity where I’ve been for most of the last 4 ½+ years. Perhaps you’d think the flares and crashes get easier to deal with over time. If so, dear reader, you’d be very wrong. Or I haven’t yet mastered the ability to tolerate the ups and downs in a way that makes the crushing grief and slide back into greater disability any easier. The Long COVID rollercoaster is not a ride I would wish on anyone, and I imagine many with chronic, misunderstood, or mysterious medical conditions can relate.

I had very good intentions to be writing more here, but even when things improved for a little while, that “extra” energy was going toward catching up on life and so many things that I’d fallen behind on with a very limited baseline that allows only for a very, VERY bare minimum. More on that in a bit…

While I was feeling better, I contributed some “professional insights” to the community on TurnTo, an app where people with Long COVID and ME/CFS can support each other, share their lived experiences, pool knowledge, and give/ask for tips on how to manage certain aspects of living with these conditions. One of the questions I fielded was about my perspective on balancing acceptance of an illness while also believing in recovery. While I think “balance” as it’s presented to us is often a myth (see also: work/life balance), I do believe that at least resisting the either/or and trying to make space for both acceptance AND hope for improvement is a really pivotal part of making life with a chronic illness sustainable.

Please accept said video below as an offering after so much radio silence.

A little sidebar in the interest of transparency: I hesitated to share this video here/outside of the app for a number of reasons.

First, it’s so common for people to think “Oh, well you look physically ok! You must not be that sick.” because they cannot see the 5 or 6 previous attempts to record an answer that was coherent and articulate enough to get across what I meant. Nor all the takes for each of the 7 other questions I answered. Or the absolute non-verbal fog I was in each evening after recording 2-3 videos responses a day (and only on days I didn’t also work or have any major exertions). Or the full-day complete crash I had after finishing all the video recording - sleeping 11 hours and then still needing to be horizontal for most of the day. (And this was an “easy” crash when I was feeling “good”...unlike my setback the last couple months.)

Or, maybe I don’t come off as “ok” and it’s really apparent how much I’m struggling. I shared a snippet of one video on my business’s Instagram story back when these went live on the app, and a friend I haven’t seen in years responded to tell me it was nice to see my face…and to let me know that it looked like I was “barely holding it together”. Mind you, that was a brief 1-minute segment from the best of 4 or 5 takes I did of that video.

Whether I come off as seeming like I’m doing pretty well, or not doing well at all, there are often microaggressions that follow. There’s so often some criticism waiting: either I’m too sick/disabled, not sick/disabled enough, ought to be trying harder, shouldn’t be trying so hard, need to be more positive, shouldn’t talk about that, etc.

In reality, I did these videos as a bit of exposure therapy for myself to resist some ableist, perfectionist narratives that contributions and ideas aren’t worth sharing unless they are polished, eloquent, have no verbal fillers or “ums”, or are otherwise fit for a TEDTalk. And what’s most important is that the intended audience for these responses was appreciative and found them valuable.

But the biggest reason I questioned whether to share this video is because this crash has me in a place where it gets hard to stay close to my own words and the conviction behind them, despite only being recorded weeks ago. There’s certainly a part of me that still believes in what I’m saying, but tapping into and hanging onto it these days can feel as elusive as those fireflies to a fumbling toddler.

I don’t want to accept this. It’s an awful half-life existence where I’m a shell of my former self. It’s an existence dictated by an illness that is ignored by most people, misunderstood by the medical professionals who are supposed to help, and that risks being worsened even further with another infection because society can no longer be bothered with realities that ruin the vibe.

I don’t want to have to keep holding out hope after nearly 5 years that eventually, maybe there will be a real treatment. Or to put faith in the next ad hoc “treatment” I try. Or trust that the next period of improvement will last more than a few months, instead of just come crashing down in disappointment again for the…20th? time in a few years.

I want off this roller coaster ride…and yet, it is the road ahead. It may be time to focus less on trying new things to get better for a bit and instead focus on getting back to just maintaining at the 30%. But just maintaining that barest of bare minimums isn’t really motivating or fulfilling. It’s also exceptionally hard. People don’t talk enough about all the trade offs and sacrifices that come with such limited capacity. Almost every other interest, pursuit, or activity I enjoyed in The Before Times is largely gone, and my energy has to be prioritized for work and life admin because I need to survive. (And if I can head off the unsolicited advice, no, getting on disability is not a feasible option for me, nor is that an avenue that actually provides “survival” in most cases.)

Cultivating this balance of acceptance and hope AND trying to create some quality of life AND trying to find and maintain a decent baseline during a crash seems like a Sisyphean challenge - and exhausting in its own right.

And really, so much of what I want to do - that would improve my quality of life - is writing more. I constantly have essays swirling in my head but can rarely capture cohesive thoughts before they disappear. I have started drafts of at least 10 other pieces at times when I felt ok enough to fight through the fog to find some words to approximate my feelings and intentions, but lose steam before I can finish and edit them. Do I need to embrace the exposure therapy mindset and just start publishing very rough, unfinished thoughts?

I also feel an immense amount of guilt for not writing here more frequently when I have paid subscribers. However, just recently getting a new paid subscriber (thank you!) also fanned a little flame that’s been growing…

So, how do I get back to writing with any sort of consistency, knowing I will also likely need to redefine and flex what “consistency” means? I’m a planner by nature (lol, so yeah…disability has been, and continues to be, AN ADJUSTMENT.), and I struggle when I can’t plan ahead because I can’t anticipate when the physical energy + mental clarity + inspiration equation is likely to coalesce, or know whether a writing session is going to tank me for a day, or five, afterwards. Which brings me here…

Genuine question ONLY for the sick/disabled/mad among my readers: how do you write/create/make anything with limited physical/mental/emotional capacity when surviving in late stage capitalism takes up so much energy? Do you have any tips on how you’ve managed to do this with any sort of consistency, however you might define that? I would love to hear in the comments, especially if you have dynamic disabilities and limitations that change.