Illness or not, there’s a limit to how much energy an individual can have. There’s only so much you can do over the stretch of a day, and at some point you’ll have to drop in to bed and recharge for several hours. So the less things you have in your life that eat away at your energy, the more energy you have to allocate to tackling those to-dos and being productive.
Have a chronic illness? That’ll eat away at your base level of energy.
Of course, there’s the energy that goes into trying to keep the illness under control: navigating the medical system, speaking with different medical professionals, getting your prescriptions filled, and attending appointments.
But for many of us (including myself), there’s also a straight-up increase in fatigue.
On the regular, lately I’ve been getting upwards of 9 hours of sleep per night, waking up feeling unrefreshed, and taking a 1-2 hour nap approximately half the days in a week (often to try to sleep off a headache or excess brain fog). I often feel a tangible depletion of energy with any sort of activity—something as simple as going to the grocery store, or something a bit more involved like getting paperwork done—and often spend the last hours of the day in front of a screen with my brain shut off, scrolling through social media or watching a TV show.
In contrast, during the two periods I’ve been in remission I would regularly get 6-7 hours of sleep, have little problem waking up to get photos of sunrise (a past hobby of mine), and stay active the whole day. During one of those remission periods I was doing a full-time practicum at university, but still maintained a full calendar of extra-curricular activities. It felt like there weren’t enough hours in the day for everything I wanted to accomplish, and I rarely needed any down-time to myself.
Given that I’m doing neither the same quantity nor quality of things that I used to, it’s easy for casual observers to think I’ve just gotten lazy, and even for me to start questioning myself on whether or not I’m putting an honest effort into staying productive. Thankfully, every so often I have a good energy day which puts things in perspective and reminds me to separate my sense of self from this chronic illness, a distinction which can so easily become muddled.
On a good energy day, I still tire more easily than I would in the past. However, one major difference is that I have some extra mental fortitude to push through any physical exhaustion that comes up. This past Sunday I did a lot of spring cleaning, got rid of things cluttering up my living space, and brought some of these items to Value Village for donation. Initially I developed some backpain and pressure at the base of my skull, but I pushed through it and kept busy the whole day.
On a bad energy day? That same physical exhaustion would be accompanied by insurmountable mental exhaustion, no stamina, and the need to stop and lay down.
Maybe I’m just making a big deal of something small, maybe I’m not. But to someone with chronic illness who’s constantly encountering both external and internal reminders of how much “better” they used to be, it’s those small victories that can mean a lot mentally. Good energy days like this past Sunday remind me that it’s not a personal flaw in character or discipline that’s to blame for my reduction of productivity, but a flaw in my health. My raw energy levels fluctuate at random, seemingly independent of how much sleep I got the night before, whether I’ve worked out recently, or what I’ve been eating. All I can do, for now, is do the best I can to take care of my body and physically recover.
Here’s to the future where the good energy days outweigh the bad energy days again.