Side Effect, Thy Name Is Exhaustion

I’m tired just from typing these words. A rare disease like pulmonary hypertension doesn’t operate in a vacuum — side effects run aplenty. One of them is a feeling of chronic fatigue. Exhaustion seems ever-present in my life; like the shadow cast imposingly from the bag that carries my oxygen concentrator, it comes with me wherever I go.

Through her book, “The Sleep Revolution,” media mogul Arianna Huffington has spearheaded a campaign to wage war on the crisis of sleep deprivation. While I haven’t read the book, I can relate to her thesis about the risks of not getting enough sleep: how deprivation can contribute to mental health problems, lower emotional intelligence, and reduced overall productivity. And while at times it seems like a good night’s sleep is a luxury, for people with chronic illnesses who still want to be productive, it’s an absolute necessity.

I’m a PH patient who lives a fairly active life. I’m not out there running miles, but I do have a full-time job that’s quite demanding, and I like to be social as much as possible. Getting enough sleep is paramount to maintaining my energy reserves and gearing up for whatever life throws my direction on any given day.

As I considered my column for the week, I reflected on how PH affects my energy levels and, thus, my quality of life, and the number of things I’m capable of doing in one day. A little further reading and research on the topic led me to uncover the Spoon Theory.

For those not familiar with the Spoon Theory, the basic concept is that a person living with a disease or disability can only accomplish a finite number of things with the energy they have, depending on how healthy that person feels on any given day. A single spoon in the bundle represents one activity, like getting out of bed, taking a shower, or choosing to cook a meal. You would need to use an additional spoon to eat the meal.

Keen to embrace this analogy, I ran through a mental list of activities and quickly divvied up the spoons for my various commitments, sleep included. From getting up in the morning and going to work, to taking my medications, cooking meals, reading, and connecting with family and loved ones, this list grew quickly. Not to mention, remembering to breathe. According to the theory, my life operates on borrowed spoons since the theory suggests a person with health struggles has a set number of spoons that don’t fluctuate with each day.

But for me, every day is unpredictable and I’m never sure how many spoons the next day will bring. Some days I feel like I use all of my spoons just getting to my job and handling all of my work responsibilities before noon. On those days, I usually don’t have many (if any) spoons left to spend time with my partner, family, and friends, or to cook. Other days, I am able to socialize after work or take a trip to the grocery store, cook a meal, and eat it. There are also nights when my breathing feels more belabored or the sound of my own rapid heartbeat keeps me up and I evade a good night’s sleep.

Like gale-force winds, PH compels me to slow down as best I can, or however much my stubborn nature will allow. I have always lived life in a rush, always walking at a quicker pace on a crowded sidewalk or looking ahead to my next academic or professional achievement. It can feel next to impossible to move against what feels like second nature.

But I’m aware of how exhaustion (and probably some anxiety) has altered my capacity in the area of communication. There are only so many emails, phone calls, text messages, tweets, and carrier pigeons I can respond to in one day. In this way, I’m more in line with the Spoon Theory. I’m sure this limited capacity to respond sounds selfish to some, but the way I look at it, I’m trying to use my spoons to boost quality over quantity of experiences or engagements. Dedicating a spoon to sleep helps limit the exhaustion that steals energy from activities that make this “new normal” feel fulfilling.

I don’t always get a good’s night sleep and I don’t always have enough spoons to accomplish everything I want in a given day. But I find joy in my job, my loved ones and friends, and a good cup of coffee. They all get spoons for now. That could change. I used a spoon to write this column because writing is part of how I live with PH. And, of course, one for sleep.

If you only had a dozen spoons, how would you choose to use your available energy?

Follow me on Twitter: @mnaple.

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Note: Pulmonary Hypertension 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 Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.