The Good Days Between the Hard Ones With Acute Porphyria
How columnist Claire Richmond spends the rare days she feels well
I’ve heard people describe living with a chronic illness like acute hepatic porphyria (AHP) as a full-time job. But it requires much more than 40 hours a week, Monday through Friday. Between medication schedules, doctor appointments, insurance issues, advocacy work, and the healthy behaviors to prevent flare-ups or acute attacks, it can feel all-consuming.
Hitting 5 p.m. on Friday once signified the beginning of the weekend, a time to leave behind the stress of my week. Compartmentalizing a rare disease doesn’t work as neatly. There’s no taking a break from porphyria. More frustrating still, it feels like I have nothing to show for my time.
Sometimes I judge myself for being unproductive and sleeping late. I grow ashamed at the amount of time I spend in bed, the invitations to social events I repeatedly decline, and the swaths of time that pass without being what society considers “productive.” Everyday tasks take me longer. I can’t maintain a routine due to unpredictable symptoms and sporadic medical appointments.
A life with chronic illness is full of interruptions and setbacks. I never want to be focused solely on porphyria; it’s not my hobby.
On a recent morning, I sat in my sweatpants, sipping coffee and scrolling through social media. I liked the posts of my peers, who’d received promotions, traveled abroad, or welcomed children into their families. I felt envious of their freedom. Energy and financial constraints didn’t affect their ability to achieve their goals or explore their passions. They didn’t have to negotiate with their bodies, insurance companies, or medical providers before making decisions.
I want to learn a skill, see the world, and even complete the projects I start. But that requires a solid foundation I can hold on to, a reliable schedule on which to build. My reality looks like discarded exercise challenges, half-completed virtual dog-training classes, canceled plane tickets, and abandoned gardening projects, all of which were enthusiastically planned before an attack. I’m optimistic I’ll complete what I start, but losing momentum again and again has become discouraging.
Activities on good days
A couple of Fridays ago, I felt pretty good. I’d ridden my electric bicycle to meet friends for our end-of-the-week coffee, a cherished ritual we started on a curb in the midst of the pandemic. Minutes after parking my bike back home, I was covered in garden dirt and giddy with an unaccustomed level of energy.
I delighted in a garden stroll with my clippers in one hand, a vase of cool water in the other. Soon, a bouquet of fresh flowers adorned my dinner table. Then, I peeled off my gardening gloves and luxuriated in hot water running over the back of my hands, satisfyingly rinsing soil from under my fingernails and just above my wrists.
I emerged from the bathroom, rubbing lotion in between my fingers, and stopped to gaze in wonder at the blooms that had been growing out of the ground in my own backyard just minutes before. A smile involuntarily crept to my lips.
On a day when I have excess room for movement and additional endurance, my inefficiencies never cease to amaze me. I don’t typically consider things like productivity or picking up an abandoned project. I might ride my bike to get a latte. I might watch a butterfly cling to the cosmos I’d haphazardly planted along the sidewalk. I might dig decades-old landscaping rock out from under layers of composted autumn leaves. I might read in the hammock or take a midday walk with a friend.
On a good day, my to-do list doesn’t matter. Productivity isn’t important when I can enjoy being in my own skin, when I can find joy in the space between attacks. Anytime I can find ways to safely reconnect without resenting, restricting, or feeling scared is critical for my mental well-being, because I can have trust issues with my body.
I typically wear leggings and sweatpants and call it my “spoonie style,” but I wasn’t feeling that look. Instead, I changed into a colorful skirt and sassy graphic T-shirt that better represented my mood. That day, I wasn’t wasting my precious, limited energy on doctor appointments. I wasn’t going to feel bad about my circumstances. I was leaving my house and going out into the world, and I wanted everyone to know I felt all right.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.
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