Side Effect, Thy Name Is Exhaustion

Mike Naple avatar

by Mike Naple |

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fatigue, PH medications

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.


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.


Andrea Rice avatar

Andrea Rice

Glad 2 read you are able 2 still work and have a professional career. I cannot work, waiting 4 disability 2 arrive and wish I had the oxygen you have. I have chronic boredom staying at home coming up with ideas 2 keep my mind busy and it is challenging 2 say the least. 4 me I have 2 rest pretty much all day just 2 walk 2 throw my garbage down the chute sometimes I can make it 2 taking out 2 bags of garbage instead of just 1. I cannot work because of PTSD and paranoia from a severe trauma years ago. Just having these 2 symptoms completely changed who I was. I don't have any desires 4 living life, few things interest me and I'm reclusive now and prefer 2 talk 2 therapist instead of the general public. My siblings don't understand but my son does he's gone 2 therapy with me. Hoping you'll never have 2 walk away from your professional career so keep going along with the spoon idea. You might want 2 consider downsizing what you live in as I did from a 1-bedroom 2 an efficiency about 400 square feet still 2 big interested in 200-250 square feet so I can save time walking around the big space and get 2 where I need 2 go. Need 4 things place 2 sleep, place 2 cook & eat, place 2 do my business and a place 4 other interests. That's really it. I get warn out walking the distance from one end 2 another and this is exhaustion. I read an article about exercise and thought that's the extent 4 me 2 exercise. Walking around inside my place. Not suppose 2 get my heart rate up because have enlarged heart so have 2 practice walking slower so used 2 walking fast and doing more than one activity at a time causes great heartache because can't remember at times so the idea of rushing is becoming less and less. Save this idea 4 the ones that don't have PH they can rush around and enjoy it. When you have a chronic illness you have 2 decide 2 pace yourself at what you can do regardless of what is considered the 'norm' 2 do. Have been thinking about working while on disability but have 2 think what could I do and would the company have tolerance and patience 4 the limitations I have. Don't know anybody that works slow it seems everyone is in one big rush all the time. I can work fast if I put my mind 2 it but not at the risk of becoming more exhausted. I have heart palpations and recently had 3 within an hour. I was so dizzy I thought I was gonna faint but made it 2 the fridge 2 get an ice pack. If I had an episode like this at work right in the middle of me working on a project, would this situation be understood or misunderstood? Plus there's no warning when the palpations come, they just show up without warning. Employers want employees 2 work, work, work, my sister works 14-16 hour days I consider her 2 be a slave with a paycheck because when she needs 2 take off 4 doctor appt, the company holds her job over her head and threatens 2 replace her. Believe there should be a law out there 2 protect employees from being bullied 2 continue working just 4 the company 2 profit. They don't understand my sister's needs would my needs be any different? Thanks 4 listening.

Michelle avatar


Thank you for sharing your story. This story is almost mine.
I am now living a completely different life, with a lot less energy.
I have gone from a full-time + 3 p/t jobs to now just 1 part-time job.
The spoon theory is familiar, as I have always had chronic migraines - so have paced myself accordingly (like spoons).
The difference of migraines is - that after a few days I didn't need to pace anymore. My spoons go back to normal & I could complete all of the tasks I needed to complete (plus whatever I missed doing). However, now... I don't ever get an extra drawer of spoons to catch up.
Good day, bad day, somewhere in between... I never know until what it will be until I wake up & have a day.
But I WILL get up, I will look for the sunshine & sometimes that will just be enough:)

louise loya avatar

louise loya

what is the true reference guide to how long one has to live with AH. Its important . for several reasons.Where to go, what to plan etc.?


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