FIRST PERSON | To preserve my health, I had to learn to truly do nothing. It’s harder than it sounds | CBC Radio

This is a First Person column by Anastasia Chipelski, a CBC copy editor and freelance editor/writer, who lives with energy-limiting chronic illness. For more information about CBC’s First Person stories, please see the FAQ.

Every aspect of my life requires planning and effort: Sitting up, standing, walking, digesting food, reading, thinking, scrolling social media, talking to friends or watching shows.

I live with energy-limiting chronic illness, an umbrella term used to skip over preconceptions, stereotypes and stigma of specific diagnoses to get to the key issue: I live with an energy impairment, and it affects every corner of my day.

In the absence of actual medical treatments, I have DIY accommodations. In the morning, I feel like total garbage. Through the afternoon and evening, I gently take care of myself, and if all goes well, I might win a little energy late at night to do some tasks. When 11 p.m. hits, it’s my time to shine.

In this late night window, I do what I can to make life easier for my daytime self. Sometimes I’ll cook a big soup and freeze half for easy meals. I play catch with my cat to tire him out, throwing toys up the stairs for him to swat down. And I set myself up for the next morning’s challenges.

I put on the kettle and scrub a couple of mason jars clean, then fill them with water and lay them out in a black speckled roasting pan with some protein powder and a piece of fruit. I add a cup of tea for the evening, then carry the whole tray up to bed. When I wake up and have to rebuild my energy all over again, at least I have a solid foundation within arms’ reach.

My relationship with work and rest

Before I got sick in late 2017, I believed rest came after work and it had to be earned. 

While I was searching for a diagnosis, I’d come home from work, collapse on the floor somewhere for a while, then drag myself to the couch. My limbs felt like concrete blocks. Then I’d stare at the empty yellow wall for hours. 

Fewer than a third of people with my primary diagnosis are able to work part-time, according to the Canadian Institutes of Health Research. Energy impairment limits my income by capping the hours I can work and then taxes those workdays heavily through hours of preparation and recovery.

Now I have zero expectations that my work days will include anything other than labour and rest. When work ends, I climb into bed and pull the blankets over my head. No sound, no light, no music, no moving, no thinking. Total rest for an hour or so, and then I can reheat leftovers, rest again and sleep.

I learned pretty quickly that what I considered resting — like watching a show — was actually an activity. Alternating between types of energy I was using — physical, emotional, intellectual — helped a bit, but I was still doing, not resting.

The cruelest trick of energy-limiting chronic illness is that things that bring joy still sap energy. Laughing, seeing and talking to loved ones, listening to music, even just thinking and dreaming — those get cut too.

I also modify everyday tasks to reduce their energy drain. I sit down to brush my teeth and prop my arm up on my leg so it’s supported and not suspended. I don’t reach up to brush my hair. Instead, I bend at the waist, bringing my hair toward my arm. 

At home, I’ve got railings and counters and walls to lean on, and chairs laid out every couple of metres, so sitting is always an option. (And of course, there’s always my dear friend, the floor, ready to hold me.)

It’s terrifying and also dangerous to run my energy account down to zero — or even worse, to overspend it. The payback can last days, weeks, months or years. If I push my body to the point where it starts shutting down, I run the risk of permanent decline. To survive, I must respect my limits.

Finding community

I learned these adaptations from people in the wider chronic illness community who taught me to be gentle with myself and to make life easier where I could. Washing dishes? Why stand when you could sit. Working on a laptop? Why sit when you could lie down. Would a mobility aid help? Use it without shame; there’s no point in suffering needlessly.

There’s a lot happening out in the world that I’m technically missing out on. But I can’t overcome my illnesses or do anything I set my mind to — and that’s fine. Life doesn’t have to be extraordinary to be valuable. I am still living from my couch, with friends on my screens.

From my couch, I attended virtual support meetings that other chronically ill people were running from their beds.

Online communities aren’t perfect, but I did see people with incredibly limited energy choosing to spend it helping others. 

In these spaces, people share the grief of losing family, friends, partners due to their illness, often after misunderstanding and judgment. Most of us have been told we’re lazy, it’s all in our head, we look fine, it can’t possibly be that bad.

Many have lost careers and dreams, they’ve been blamed, shamed and scrutinized while trying to access benefits that keep them in poverty. And yet, today I am well enough to lean toward my lap desk and type on this keyboard because they taught me how to live with my illness. 

I don’t work until I collapse anymore, and I don’t look up to those who do. The leaders and heroes I respect most — some of whom are friends, many still strangers — are ordinary people living exceptionally quiet lives at home. I owe them everything. They taught me how to live, and to do that, how to rest. 

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