Fanning the Flames
Keeping the creative spark alive during chronic illness flare-ups
The Crash
Long Covid/chronic fatigue flared up, and I’m in the middle of what I suspect is yet another month-long crash.
There are positives, to be sure. The nerve pain has been relegated mostly to my upper body instead of my whole body, which hasn’t happened since I got sick. It’s…weird? Hopeful? Weirdly hopeful? Instead of being completely bedridden, I’m more mobile than I have been in the past during a crash. I reached out to my doctor after 5 miserable days of not being able to stay asleep for more than 2 hours at a clip, and got some medication for what I finally identified as nerve pain that I can use as-needed, and it helped.
I’m still fatigued, but not as terribly as I have been in the past. It also doesn’t mean that this crash, like the others, isn’t hard.
I’m physically exhausted and frustrated. I missed the only concert I was looking forward to this year. And, while I know that I have goals and dreams that I’m working towards, it’s hard to see those dreams when I’m living life in chunks at a time and I feel like I’m on pause while life continues around me.
This is the challenge of being chronically ill. Knowing that every flare up or crash resets the clock constantly ticking in the background. I have no idea how much time I have before the next crash, but it was 8 months and change this time, and when the crash came, it was bad, but not as bad as it’s been in the past. I will take the wins where I can get them.
That being said…it sucks. It sucks to have your life grind to a halt because your body decides its time. I’m stuck in my mind while I wait for my body to keep healing. And I haven’t had a chronic fatigue crash in a while where I’ve been forced to miss out on something that I planned.
Yes, I missed seeing j-hope in NYC, and once again my j-hope curse continues. I missed seeing him in 2022 when he headlined Lollapalooza in Chicago, but I was still so sick there’s no way I could have gone (no exaggeration; I’m not sure I would have survived, and I would had ended up hospitalized at best). My j-hope curse continues.
I promised myself that no matter how terribly I’ve felt inside was that I was going to keep my creative life moving forward, even on my worst days.
Keeping Your Spark Alight
In between resting and taking naps, I made sure to eat enough and to keep moving forward on my creative pursuits. It matters to me, and if I’m not participating in my own creative pursuits, I’m miserable. Anyone with a chronic illness knows how easy it is to spiral downwards when your body decides its time to stop, and I’m no exception.
While I’m not a proponent of escaping your reality, I did spend one evening curled up in bed with my Steam Deck playing my favorite cozy game, The Cosmic Wheel Sisterhood. It’s a beautiful visual novel-style game with one of my favorite game soundtracks of all time. It gave me, much like my other creative outlets give me, a much-needed mental break. It’s hard to be still when all you want to do is to just live your life.
So, this time there were a few things I tried to do to keep myself sane, creative, and feeling like I’m still working on my life even when I need to take far more breaks than I’d like.
Micro-Creative Practices: I set a timer, or just promise myself to work on one little thing for myself, for 5-15 minutes. It might be writing, outlining a writing project I’m already working on, journaling, or reading. But something that keeps my creative flame flickering. If I feel okay and want to keep going after the timer goes off, I do, but otherwise, I check in and give myself permission to get more rest. Or, better yet, I lay down while I’m doing my creative task if I can.
Restricting Physical Tasks: I set a timer for all of my physical tasks, and limit my daily physical tasks to 1-3 max. It’s too easy for me to do just one more thing, which then becomes a quick way to expend way more energy than I’d like.
Alternative Creative Outlets: When my writing well feels empty, I grab another creative activity. I knit and crochet; I sketch and paint; I practice cello if my energy is higher, and if not, I’ll do vocal warm-ups.
REST IS PRODUCTIVE: Living in a capitalist hellscape bordering on authoritarian dystopia is bad enough, but so many western societies build someone’s worth based on what they do and what they produce. I’m working very hard to unlearn this mindset, even if it’s forced, but I keep reminding myself that REST IS PRODUCTIVE. Yes, I’m shouting this for you as much as for myself. My body needs it to heal, to keep healing, on top of processing the normal, everyday physical and mental processing that rest provides. I am not going to be able to live the kind of life I want to without rest, and without taking extra steps to take care of myself, and spoiler alert, neither will you. Here’s a great video about the benefits of rest by YouTube creator, David Achu
Celebrate Your Progress, No Matter How Small: I’ve made it a point of ending my day with a practice of gratitude, even if the only thing I can think of to be grateful is that I made it through the day. I’ll text a good friend to witness my progress in the midst of my struggles, or toast myself with an iced coffee.
It was getting back into some cozy gaming that helped me reconceptualize what I previously only saw as deficits. During these crash times, I look at my little bits of creative time as grinding for experience. Instead of the way hustle culture looks at grinding, I look at this as continuing to the tiny steps of work so I can eventually level up. There’s no epic battle I’m preparing for; I’m not doing anything other than keeping myself going on the plateau, trusting that everything I’m working on will keep building on me.
Grinding doesn’t have to be sleepless nights and turning your blood into coffee; grinding can be writing in between doing what I have to do. It can be curling up on the couch with a cozy game to recharge your mind so you can live to fight another day.
Sometimes grinding is resting <3