I’m a wee bit embarrassed to admit that my Halloween costume is still on a hanger on prominent display, hanging from a bookshelf in the bedroom, waiting to be boxed up and put away. I’m thinking of calling it a room decor feature by now. It’s a spectacular clown costume, I must say, complete with big baggy pants in ravishingly bright colours and, of course, with its own rainbow clown wig. I’ve worn it dozens of times over decades, and often loaned it out to Halloween party-goers among my family and friends, too.
It’s pretty nice, but it’s not nice enough to explain why, after over a month, I haven’t been able to put this costume away yet. I suspect my utter inability to do so reflects the state of my life these days, and the fact that my days are typically divided into these two distinctly unique phases:
Phase #1: Very early morning
Phase #2: Everything after that
It’s almost as if two entirely different people inhabit my body, each self unrecognizable to the other. Early morning for me means anything close to 4:30 a.m. when my eyes suddenly pop open and I leap happily out of bed. In the early days post-heart attack, I recall thinking that at this time of day, I almost felt like I was “normal” during a scary time when nothing felt normal anymore. Before dawn is when my brain is functioning, and when my ongoing cardiac symptoms are the least distressing.
But by late morning or early afternoon, I start to feel like a balloon with a pin hole in it, energy seeping out in a distressingly rapid fashion, and debilitating symptoms associated with my coronary microvascular disease diagnosis raising their ugly heads while the hours pass.
Worse, everything from making a simple decision to making conversation seems overwhelming by dinnertime. This has, as you might guess, radically affected my ability to enjoy any plans in the evening that don’t include getting into my jammies and falling into an exhausted sleep.
And paradoxically, even while making my bed at the crack of dawn, I often look longingly at that big fluffy down quilt and all those nice soft pillows, and wish it were bedtime already. See also: “25 Tips To Manage the Crushing Fatigue of Heart Disease”.
Like most people living with a chronic and progressive illness, I have had to learn the fine art of p-a-c-i-n-g, a skill I never bothered to learn before that spring of 2008 when my heart attack was diagnosed (after I’d been misdiagnosed in the same ER two weeks earlier with acid reflux).
Before then, I was always one of those Type A, hair-on-fire people, the last one to leave a party, with a personality ideally suited to my long career in public relations, where we learned to juggle multiple deadlines, all due yesterday, and all while tap dancing through life with smiles pasted on, no matter what.
Those days are done.
Kelly Young, writing for Rheumatoid Arthritis Warrior, beautifully describes the fatigue of chronic illness. She writes:
“All of a sudden on Monday afternoon, it felt like it was 2 a.m. and I should be in bed. This is not the same as being tired. It’s more like being sick with the flu. I can remember the ‘good’ feeling of tired after working hard. This is not it – this is being sick. It can come at any time of day or night.”
Pacing is an important skill for all heart patients to learn and practice. For example, I have learned (through some often embarrassing episodes of trial and error) that my days must now be viewed as “one-outing” days, or “two-outing” days, or (rarely!) “three-outing” days. An outing can be almost anything: a doctor’s appointment, walking with friends, public speaking, babysitting my granddaughter, the adorable Everly Rose (UPDATE: or my grandson – the equally adorable Zachary), or shopping, or simply attending a function that requires small talk.
You may be familiar with Christine Miserandino’s blog “But You Don’t Look Sick” and her famous “Spoon Theory“ essay. It’s all about the need for those living with chronic illness to carefully plan out each day to make sure that we don’t run out of precious “spoons” before the end of it.
She explains why it’s so hard for others to understand this. Like most people with chronic illness, I seem pretty “normal”. I look and sound much like my old self, especially during that early morning Phase #1 time.
Heart patients don’t generally look like heart patients, because heart disease is an invisible illness.
Dr. Pia Alsén, a Swedish researcher at the University of Gothenburg, talks about “incomprehensible fatigue”. She’s the lead author of a study that found about half of all patients who survive a myocardial infarction (heart attack) are still experiencing “onerous fatigue” four months after the infarction.(1) She observed:
“Many heart patients experienced the fatigue as new and different, not related to physical effort or a lack of rest; it occurred unpredictably and could not be attributed to any definite cause.”
Now, back to my Halloween clown costume. . .
My old self BHA (“Before Heart Attack”) would have swiftly dealt with that costume while getting ready for bed on Halloween night. It would never have lived on a hanger for a month on display, reminding me every day to DO SOMETHING! Have you noticed that the mere sight of undone tasks can suck the life right out of us, as the philosopher William James wrote back in 1886: “Nothing is so fatiguing as the eternal hanging on of an uncompleted task.”
So then why can’t I box up that costume and lug it to the storage locker first thing in the morning when I’m annoyingly cheerful and perky?
I suspect it’s because my Phase #1 time is the only part of the day when my brain is even remotely functional. It’s when I do all my blog writing (for example, it’s now 5:05 a.m. as I write this first draft of what you’re reading). I also moderate incoming reader comments, update social media posts, respond to emails. (The only tasks requiring brain power that I can’t do are returning phone calls, because my callers, for some reason, don’t like their phones ringing at 5:05 a.m.)
The fun stuff I love to do is also best planned for Phase #1, like enjoying my first coffee of the morning out on the balcony while the rest of the world is dark and silent. I believe that a well-spent morning can somehow help to jumpstart the entire rest of my day.
All of my exercise activities must take place very early in the day, too. I keep a carefully paced schedule – for a couple of precious hours – from my regular walking groups to appointments, meetings, speaking events, or basic household errands like grocery shopping. But I have one eye on the clock and the other eye on my heart, because I know that I’ll need to get back home well before lunchtime, which is when that little balloon with the pinhole begins its rapid deflation.
Trying to take advantage of the energy capacity of Phase #1 means that by the time I’m back home, I’m too pooped to even think about the effort required to put away a clown costume – or anything else. Maybe tomorrow, I’ll get to that…
One of my favourite websites, Apartment Therapy, ran one of those de-cluttering articles this week called “Five Things to Make Any Room Look Nicer in 5 Minutes”, including this gem:
“Let in more light during the day, or dim the lights at night.”
Now that’s something I could likely do even in Phase #2. Open the curtains/turn off a table lamp. Check. Check. That’s assuming, of course, that I can lift my head off the pillow.
Almost all routine household tasks feel impossible once Phase #2 is here. When the kids come over for dinner, it means a 2-day prep. I need to set the table and start the shopping/chopping/cooking countdown the day before to minimize all last-minute tasks. And when I recently agreed to an out-of-town film crew’s request to interview me for their upcoming documentary about women’s heart disease, for example, I knew that I’d need to carefully squeeze in many early mornings of housecleaning in advance of their arrival. Those old days of being able to do a big last-minute blitz for company are but dim memories.
This awareness has taught me that sometimes, an “outing” is so appealing that it’s really worth the post-event recovery, and sometimes an invitation warrants a clear “No, thank you!” up front, simply because the cost-benefit analysis cannot defend the 2-day recovery that this activity will demand later on.
The kind of immobilizing late-day exhaustion I’m describing is hard to explain to anybody who has never experienced it. See also: ‘Healthy Privilege’ – When You Just Can’t Imagine Being Sick
The lessons here seem simple, yet still oh-so-hard to accept for many of us:
– know and keep your limits
– respect your body
– take naps
– redefine your priorities
– plan ahead for both preparation AND recovery for each outing
– remember that ‘NO’ is a complete sentence
– practice self-compassion – not self-criticism – about what’s best for YOU
1. Alsén, P., Brink E. & Persson, L-O. “Living with incomprehensible fatigue after recent myocardial infarction.” Journal of Advanced Nursing, 64(5), 2008. 459-68.
Q: What are the phases in your own day-to-day life that help determine what or how much you can do?
In my book, “A Woman’s Guide to Living with Heart Disease“(Johns Hopkins University Press, 2017), I wrote much more about the challenges of adjusting to life after a cardiac diagnosis. You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price when you order).