Does Conserving Energy Affect the Severity of My Acute Porphyria Attacks?
When it comes to chronic illness, I’ve often wondered if living by limited boundaries and conserving energy would prevent my lowest lows.
I appreciate how the spoon theory, a popular analogy in the chronic illness community about conserving mental and physical energy, simplifies energetic deficits for people who don’t understand what it’s like to budget bodily resources every day. But when it comes to chronic acute hepatic porphyria (AHP), it’s no secret that I’m skeptical of the spoons concept.
Many people with AHP have acute intermittent symptoms, but some develop chronic pain, fatigue, and weakness. My pain is chronic, but I experience episodes of lethargy, nausea, and muscle weakness that often correspond with some of my attacks of acute pain. I call these “holes,” and it’s difficult to predict when I’ll fall into one.
Three days into a recent hole, I couldn’t eat, felt lethargic and weak, and had been sleeping around the clock. During these episodes, I don’t answer texts or phone calls, watch the news, or check my emails. On these days, my focus is surviving one minute to the next.
Living in an acute porphyria hole
I went back and forth between the do not disturb and vibrate settings on my phone, because the only people I had to answer were my partner, my mom, who’s in town visiting, my brother, who just had a baby, and specific friends, who were helping me walk the dog. The vibration of each notification rippled like waves of shame throughout my body. Without looking, I mentally added responses to a to-do list piling up for a future when I felt up to it. But when? A day? Two days? A week?
I’d canceled my plans for the last few days and still left some people hanging. I had hoped to take a trip with friends next week, but couldn’t imagine having the energy to travel. I hadn’t bailed on them yet, and I compartmentalized every time my mind thought about it. My days consisted of naps, listening to audio books, watching bad reality TV (the kind you can intermittently fall asleep to and still follow without any issues), and hot showers.
During the height of the COVID-19 pandemic, we installed a guest suite in the basement of our 100-year-old bungalow. This has become my kingdom for the days when I’m sick, my literal hole in the ground that contains the only bed in the house that the dog, Lenny Bruce, is allowed on. It’s peaceful in the cool sheets of the antique bed, surrounded by pillows, with the weight of my dog against my feet. A virtual shelf of romance audiobooks and mindless dating reality shows were like balms for my anxious heart.
I showered frequently, cranking up the heat and warming the porcelain before setting my body up against the side of the tub. Curled up on the shower floor, I tried to find a comfortable spot to let the water fall on my body, encapsulating sore muscles in soothing warmth. The sound of big drops against the plastic of my shower cap put me at ease, reminiscent of rain against an umbrella on an early spring morning. When I’m in a hole, I have a hard time being present in my body, but in the oasis of my shower, I can surrender to the warmth and the steam.
When I could no longer stand the heat and turned off the faucet, I found my towel was still damp from my previous shower. I dressed with skin glistening. It’s the minutes post-shower that I feel most invigorated. At this point, my mind is furthest from fatigue and uncertainty.
It’d been three days and I was still wearing the same shirt, the softest I own, the black tee from KEXP that I bought from a vending machine in Seattle last March. How many more days will I feel like a prisoner to my bed? How much longer will I have to remind myself that even on days I can’t do anything productive I am still worth something?
As I found my way to bed, I thought about the 10 days my body had allowed me to be there for others, to take bike rides, and to see friends. Just seven days ago, I finished organizing and setting up my niece’s nursery, since she was born two weeks early. And last weekend, I planted a pollinator garden in the front yard with my partner.
I tend to think this episode of illness was inevitable, as long as my hormonal fluctuations are in the driver’s seat, but that’s an easy excuse. Perhaps if I’d paced myself more on those days I felt capable, I wouldn’t have fallen so extremely hard and fast. As I lie in bed petting Lenny, I can recall the joy I had in folding teeny, tiny baby leggings and argue that just maybe … it was worth it.
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.