Sometimes a cluttered home can be a healthy home when you live with chronic illness.
How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
My apartment is always a little dirty. There’s dog hair on the floor and dishes in the sink. Books and magazines scatter the couches and — OK, I’ll admit it — the floor.
I have to prioritize the important things, like work and
self-care, over things that can wait, like cleaning.
I’ve come to terms with the fact that my home will always be slightly messy. But I didn’t always feel that way.
As a kid, my room was a wasteland of Barbies, toy horses, and clothes. When I had to hurry up and clean (Mom’s orders!), I’d scoop up an armload of stuff and dump it in the closet, slamming the door shut before an avalanche could send my odds and ends back to their natural habitat — the floor.
I thought being messy was one of those things I would outgrow. In some ways, that was true.
The older I got, the more I wanted my space to be clean and organized.
But in high school, I started having strange symptoms. I was tired all the time, but I couldn’t sleep at night. In college, I passed out in the middle of the day — literally fell onto my dorm room floor and had to drag myself into bed.
Some doctors diagnosed me with everything from depression to lack of exercise. Others ordered brain scans and bloodwork. They tested for multiple sclerosis, lupus, and cancer.
The different theories made me feel discredited, and helpless in solving this health mystery. Maybe the problem was in my head. Maybe it was in my gut. Maybe it was my imagination.
Books and papers littered my study at home, a mess my dad called my “filing system.”
If asked about it, I would chalk the chaos up to having an “artistic temperament.” In reality, cleaning felt like a daunting task.
Part of narcolepsy, at least for me, is that I have highs and lows in energy. Sometimes, cleaning is no big deal. I’ll go on a spree, really dig in and deep clean. For a few days, my apartment will be spotless.
But this small success makes me start thinking my place should be
spotless all the time. Once I dive back into the cycle of exhaustion again, the
thought lingers, and I beat myself up for not being able to achieve the same
level of cleanliness again for weeks.
After college, as my friends and I started to get our own houses and condos, the problem continued.
My best friend is an interior design buff. Not only is her condo always fashionably adorned with kitschy pillows and soft throws all in shades of teal and taupe, but it’s immaculately clean. I’m embarrassed to invite her over.
I’ve even asked her for cleaning tips, thinking maybe if I knew tidying hacks that it would negate the fact that after an hour of cleaning I need to lay down.
At age 27, more than a decade after I first started having symptoms, I was finally diagnosed with narcolepsy.
In some ways, the diagnosis made my life easier. But it hasn’t been in the ways I expected.
I thought that once my illness had a name, medicine would help me overcome the weakness, fatigue, and sleeplessness that comes with the condition. Instead, the medications that doctors prescribed me have either only had a limited effect or they’ve made me feel worse.
What the diagnosis has done is help me understand the causes of my symptoms.
For many people with narcolepsy, strong emotions can aggravate fatigue, cause cataplexy episodes of muscle weakness so strong they collapse, or even induce sleep attacks.
Fear and stress are the triggers that cause my narcolepsy
symptoms. You know what stresses me out? The perpetual task of cleaning. It’s
never done. Even when you feel like you’re done, you have to start right over
again if you want to keep your place tidy.
Another factor in dealing with my chronic illness has been functioning on a limited energy budget.
Tasks that I find stressful require more energy than others, regardless of their complexity.
My experience has been a bit different from the Spoon Theory, where people living with a chronic illness start each day with a limited number of spoons. For me, narcolepsy means that many days I start out with an average number of spoons.
I can hike 5 miles on a quiet trail in the woods without once thinking about my condition. I have spent entire days out kayaking in the sun. Relaxing things — the more active the better — improve my condition rather than worsen it.
When I try to do things that stress me out though, that’s when I run into trouble. Since stress drains my energy, I’ve learned to find ways to manage or avoid encountering a lot of stress.
I want my apartment to be clean. I really do. But I know that it
isn’t always going to be.
That realization — and being able to let go of my idea that the perfect apartment is spotless — has helped me cope with having a chronic illness and prioritize my health. Now I try to be kinder to myself about the things I don’t have energy to do.
It’s taken me years, but I finally understand that my healthiest home might not always be tidy.
Rebecca Renner is a writer and editor living in Boynton Beach, FL. Her work has appeared recently in New York Magazine, the Washington Post, and Electric Literature. She is currently working on a novel. You can read more of her work on her website or follow her on Twitter.