by Carolyn Thomas ♥ @HeartSisters
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?
Why “NO” is a complete sentence
Why taking a shower is so exhausting for heart attack survivors
When we don’t look as sick as we feel
Looking good for your doctor’s appointment: oui ou non?
“You look great!” – and other things you should never say to heart patients
Exhaustion: the ‘leaky emotion’ of chronic illness
Depressed? Who, me? Myths and facts about depression and heart disease
I wrote much more about living with heart disease in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
20 thoughts on “Still too tired to put away the Halloween costume…”
Thank you for your writings. I had extreme fatigue before my heart bypass and still have fatigue after. Sometimes I feel family just thinks I’m lazy when I opt to stay inside.
I have good intentions to do things but I am just so tired even after getting 8 or more hours of sleep. When I must run an errand or have a doctor appt., I pray and then force myself. I take plenty of supplements and I take antidepressants for chronic depression, and my blood work is fine.
So thank you again for your article. Makes me feel a little less worthless that I’m not alone out there. God bless Heart Sisters!
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Dear Prunie – paying attention to what your body is telling you does not make you “worthless”. I seem to be surrounded by those “good intentions” you mention every day!
It’s so hard for family and friends to “get” how debilitating these symptoms can feel. Read that section on: “25 Tips To Manage the Crushing Fatigue of Heart Disease” to see if any of those might help you feel a bit better. And you are definitely not alone out there!
Hi Carolyn, first time commenter here….
This blog post really resonated with me, and like Meghan I will forward it to people. I have Radiation Induced Heart Disease (RIHD) from cancer treatment when I was 21 in 1977…luckily the heart damage didn’t affect my life until around 2009 when I started exhibiting symptoms of congestive heart failure (Mind you, that radiation was the cause of thyroid cancer in 2001). Not that I or any GP realized (one prescribed a puffer as the solution to the wheeziness I experienced) even as my ability to walk, let alone ski or hike, was curtailed.
In 2014, I finally was diagnosed with CHF — in Emergency, by the woman who is my internist now— and then had open heart surgery to replace the aortic valve, a few weeks later. And of course, with RIHD, things continue to fall apart….my latest angiogram in October showed 80% blockage in the RCA…which developed in 4 years (during which time I was treated for breast cancer, also a result of the early radiation…one of the chemo drugs, doxirubicin, damaged heart cells).
Given the damage to epithelial heart cells and hardening of the arterial walls, I am not a good candidate for angioplasty, stents, or CABG. So, I live a version of your life, being careful of my energy expenditure, going to far fewer events, and when the “air coming out of the balloon” happens to me, usually in the early afternoon, doing not much of anything, except reading, knitting, crosswords, and games on my iPad.
Because I look and sound “normal” not even my husband really understands the enervation I regularly feel. So, it was a pleasure to read your post, and others’ comments, and feel validated.
Thanks for continuing to write Heart Sisters.
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Hello Alane and welcome! Wow, you have officially exceeded your maximum lifetime quota of yucky things happening to you…
RIHD is tragically common; in fact there is an entire new field of medicine – cardio-oncology, to treat just these conditions. It seems horribly cruel that the treatment that saved you in 1977 is also what has hurt you since then. I’m told that current cancer therapies are far improved in helping to prevent these associated issues.
Thank you so much for taking the time to share your story here.
Yes, I regularly see cardio-oncologists at the Diamond Centre in Vancouver. I wish to say clearly to women who come here…be aware of the risks of doxorubicin for already damaged hearts should you be facing chemotherapy for breast cancer.
Thank you, Carolyn, for a place to share our experiences.
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We’re practically neighbours, Alane – I’m in Victoria. So glad you’re a regular at the Diamond Centre. Do you know Dr. Margot Davis there? She and I spoke on the same discussion panel at “Your Heart, Your Health“, a public event a few years ago in Vancouver.
Carolyn, I live in Powell River so have to go to Vancouver for some specialists and services. I don’t know Dr. Davis… Lynn Straatman oversees the clinic I go to. I was glad my GP referred me to Dr Karen Goddard, director of the Late Effects, Assessment and Follow-Up Clinic…a wonderful fairly new service especially for long-term survivors of cancer treatments….many of course who have heart problems.
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That’s a long way to go for a doctor’s appointment (4-5 hours of scenic seaside driving, including a couple of ferry trips, as I recall?) Despite that commute, it’s awesome that we have such specialized clinics like yours in our province, isn’t it?
I so relate to everything you said here Carolyn and I’m going to forward this to my family members who don’t complain about my fatigue but probably don’t completely understand it either. And I never even had a heart attack — I have 2 stents and I’m sure narrowly missed an attack both times.
Most days are quiet for me right now but every once in awhile I have a day like last Thursday which was insane — so many things going on, errands to run, etc. I have to drive my 20yo daughter to her job and she has to be there at 6am on Thursdays (I also get up very early and my morning coffee time is the only quiet and clear-thinking moment of my day — I really related to what you said about that!), so that was the beginning of the day.
Then I had a meeting, errands to run, a dr’s appointment, a job fair I thought would be a great idea to attend since I need a job, and in the evening my cardiac support meeting. Plus a lot of driving in between and a dinner at the hospital cafeteria that gave me wicked heartburn. When I got home I came in snapping at my husband for not shoveling the walk, etc, and I knew I was past it and just needed to go to bed. And yes, a day like that will also wipe me out for the next day too. Fortunately such days are few and far between, but Thursdays tend to be a bit like that fairly often. Like Teula, I have a daily to-do list and things often carry over to the next day or beyond. You need to take care of yourself first and foremost — most things can wait.
I would like to add that part of my fatigue no doubt also stems from blood sugar changes (type 2 diabetic), but the one thing that has really helped (I hate to admit) has been my diagnosis of sleep apnea and using a CPAP machine. I just wanted to share with everyone that it might be worth it to ask your doctor if this could be an issue for some of the fatigue. I am not fond of using the machine (and waking up with “CPAP face” — lines caused by the mask as I sleep), but the fatigue I felt before this was so draining I couldn’t even function some days, and now it’s definitely much better.
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Hi Meghan – your Thursday does sound insane! The trouble with deciding which “outing” to omit to allow for the preservation of healthy p-a-c-i-n-g is that, at the time, each one seems like an absolute MUST-DO, each with a perfectly sound reason that it couldn’t possibly be rescheduled for another day. The truth is, of course, that very few things must be done on this day and only on this day.
Glad that the CPAP machine (despite the lines on your face!) seems to be making a difference for you. Imagine getting through that Thursday after a bad night’s sleep…
Thank you for putting this into words. While my event was not as severe as others I have heard about, what you write definitely describes my new normal and it really feels good to know that someone really understands.
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Hello Tobe – that “new normal” is just how I think of it, too. You are not alone!
Last January, when putting away the Christmas things, the sugar bowl from the Christmas dish set was accidentally left out of the packing boxes. I procrastinated about going out to the garage to put it in its right place, and within a few weeks I was not feeling well enough to want to do it (it sounded like too much energy).
A few weeks after that, I had my heart attack, and the sugar bowl remained on the kitchen counter. It sat there through the entire spring and summer until I finally decided in the fall, “Oh well, it’s almost Christmas, I’m not going to worry about it anymore.”
Next week my husband will unpack the dishes again (I’m recovering from pancreatitis now and REALLY don’t have any energy now!) and I guess you can say the sugar bowl is finally in its proper place again!
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Oh, Charlotte! I have to admit that I laughed right out loud while reading your story. I can COMPLETELY relate to how that Christmas sugar bowl managed to take up permanent residence on the counter all year…
Do you find that after a while, the out-of-place object becomes kind of invisible so it stops even bothering us to look at it?! Hey! Maybe that will happen to my clown costume…? It might just fade away like part of the wallpaper! Thanks for making my day, and I hope your recovery goes smoothly and uneventfully. Take care ….
Yep! Defines me. Added to which is old age and chronic fatigue/fibromyalgia.
Interestingly I was able to finally get a referral to an internist as I have never been assigned to a cardiologist. She was amazing and after a one and half hour exam she told me to come off the beta blocker!!! Apparently after 3 years post MI a patient is to come off the beta blocker if no cardiac symptoms. It has been almost 6 years and no one caught that. Since then I have had a bit more energy but that is usually during the morning time.
Still, I tire easily and it can be crushing at times. Usually this happens after an exciting or stressful event, often the day after.
I will be 80 on December 13th and my son is organizing a Sunday event for me with about 35 people at my home. While this is thoughtful of him and indeed he was very insistent, I am plagued with anxiety about the after effects. Still, it is indeed a milestone and once in a life time.
Oh! I do hope the costume can be put away for another year, Carolyn, haha!
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Lovely to hear from you! First, that is very good news about your internist catching that beta blocker. There seems to be some controversy about these beta blockers, prescribed routinely (95% of heart attack patients). For some reason, I was among the 5%: I was not prescribed them along with the fistful of other cardiac meds I had to take. When I was later suffering with post-MI depression, my cardiologist wondered aloud if this depression might be the result of taking beta blockers (i.e. the famous “beta blocker blues”).
“NO!” I replied. “It’s because I’ve just had a frickety-frackin’ HEART ATTACK – and besides, I’m not even taking beta blockers!”
A U.K. study last year on 179,000 heart attack patients found that beta blockers were most effective when a major heart attack created significant heart damage, poor heart function, or heart failure, and no increased risk of death when beta-blockers were discontinued after a year of treatment so long as heart failure did not occur after the heart attack.
You raise such an important point about a delayed response to a major outing. Sometimes, at a really fun event, I think it’s tempting to keep going far longer than we had planned, buoyed along by enjoying all the excitement, feeling surprisingly good, only to crash and burn on the following day. It’s like a post-event flu. I hope you have a lovely birthday gathering celebrating such an important milestone and get a co-conspirator to politely usher you away from the festivities at an appointed hour – and then plan two relaxing days to recuperate immediately afterwards!) Happy Birthday to you in advance… ♥
You are so right. Every day I make a list of things to do. Some will not get finished so they go for the next day’s list. I’ve learned limitations that are not what I once did.
I’m celebrating life after my MI 30 months ago with 7 stents. Luckily fabulous doctors and nurses at Mayo Clinic St Mary’s hospital saved my life. I retired from teaching 6 years ago and continue to substitute. But more than two days in a row wipes me out. I clean, I rest, and then try it all again.
I love your articles – they are very enlightening. Thanks.
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Thanks for your kind words, Teula. Your daily list is a MUST, and, as you say, we have to be okay with letting some things on that list go – depending on the day. Learning, for example, that teaching two days in a row wipes you out is your body giving you important information about self-care.
As a flippant aside: when I was too tired to put away the vacuum cleaner and it stayed in the hall for six weeks I told a friend who remarked on its continued presence “I am experimenting with installation art. I call this piece “Domestic Duty Abandoned”.
Perhaps you could title the clown costume and start a trend?
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You are SO funny! Perhaps I could entitle my clown costume “Forgotten Clown” – and move it right into the living room… Thanks very much for making my day, Lindsay!!