by Carolyn Thomas ♥ @HeartSisters
It was only after my heart attack and subsequent cardiac complications that I had to learn the fine art of p-a-c-i-n-g, a skill I’d never bothered to master until then.
In fact, many freshly-diagnosed heart patients tell me that they feel reluctant to embrace the concept of pacing themselves to minimize symptoms or protect dwindling energy reserves. Some prefer instead to focus on returning quickly to “normal”, whatever that is. . .
Deciding to pay attention to pacing can feel to these people like they are giving in to the diagnosis. So it may help to reframe this need for balance following diagnosis of a chronic and progressive condition like heart disease. We tend to grieve the loss of our former self – the one who could happily run around all day with her hair on fire. I sure used to miss that version of my former self! But I now know that when I pace myself, I’ll be more able to enjoy each day. When I don’t pace, I don’t enjoy.
Because I live with the often-debilitating cardiac symptoms of coronary microvascular disease, I now describe my days as “one outing” days, or “two outing” days, or (rarely) “three outing” days – each outing followed by periods of exhaustion and recuperation. Some outings feel big (like doing a presentation or a live media interview) and some feel small (like walking downtown), so recovery times can vary – but it’s all built into my pacing schedule. On a bad day, my “three-outing” plans may evaporate entirely, so flexibility is also a useful skill to work on.
Compare this to my pre-heart attack life, when I could easily knock off several outings on the way to my first outing.
Author Toni Bernhard, in her recent essay called 19 Tips from 19 Years Sick, had some advice on learning to pace ourselves:
“As I wrote about in my book, How to Be Sick, pacing is my go-to treatment. I admit that I need to do a better job of sticking to this tip myself but, when I do, I’m less likely to feel ‘trashed’ at the end of the day. Even stopping to lie down for 10 minutes can help me make it through the day. My wish is that all of you who are reading this are better at pacing than I am!”
I especially liked Toni’s tip that she calls the “50% rule”:
“Given how you feel on a particular day, you decide what you can comfortably do – and then do only 50% of it. I also recommend that you think of that unexpended 50% as a gift you’re giving yourself to help you feel less sick and in less pain.”
Smart pacing always starts with smart planning.
Toni, for example, is a person who had always loved to host lively dinners and parties for friends or family, but she worried that her entertaining days were over once she became ill. But her husband, an enthusiastic cook, readily offered to take over all the prep and try out different plans. Forget large late-night dinner parties – why not scaled down morning brunch events for those (like me!) who tend to feel better early in the day compared to later on?
Toni also had to make an advance plan about when she’d be able to join her guests. She knew she wasn’t well enough to stay from start to finish. She could either be early to greet the guests as they arrived and chat with them a while before excusing herself to go lie down, or she could rest during the early part of the gathering and then come out later for desserts and to say goodbye when their guests were leaving.
She was realistic. She unapologetically accepted that she couldn’t stay up for both, but planning ahead for a partial visit meant that she could pace herself, and that meant she and her husband could still have company over. And just because she’d always entertained her guests a certain way before didn’t mean she couldn’t still do what she loved – but this time, in a modified way.
Planning ahead must also mean taking a hard look at our calendars.
Like Toni, I cannot have an appropriately-paced day ahead of me if my calendar is as jam-packed as it used to be, pre-heart attack, when my busy-ness seemed a cause for perverse pride:
“Hey, Carolyn! How are you doing?”
“Oh, you know how it is. . . crazy-busy, as usual!!!!”
I had morphed, almost overnight, from bragging proudly about how “crazy-busy” my life was, to a state where almost every outing or activity required resting beforehand, and recovering afterwards. Post-heart attack, even taking a shower required a 20-minute lie-down just to recuperate!
At first, I couldn’t figure out what was happening. Why couldn’t I just pull up my socks and snap out of this? I felt so distressed about my reduced stamina that I mentioned this sudden change in my ability to function to my (now former) family doctor, who then asked me:
“Can’t you just push through the pain?”
Well, in fact, I couldn’t. That’s what made it so distressing!
Planning a heart-healthy calendar page means making thoughtful decisions. Which outings or activities mean the most when you can no longer say yes to many? Take a moment to think about how you truly want to spend that precious hour of your life. And then practice learning to say “No!” – no explanations or apologies needed. Remember, dear reader, that“NO!” is a complete sentence.
I have had to learn the hard way that planning ahead and carefully counting my “outings” could mean the difference between having a flare of awful symptoms and being able to enjoy myself relatively symptom-free. Yet unlike the very wise Toni Bernhard who knew her limitations and made self-care plans in advance to carefully protect her health, I used to just soldier on, saying “YES!” to many outings in the early days post-diagnosis just because I’d been invited!
Sometimes, an invitation is so attractive or so important to me that when I weigh the pros and cons, I do agree to go, despite knowing there’ll likely be harsh consequences for saying “Yes!” – but that’s a choice I’m occasionally willing to make.
I’ve learned in general, however, how brutal the consequences can be when I don’t respect what my body’s trying to tell me. And I’ve also had the rare but fantastic experience of having lovely outings precisely because I’ve done some planning ahead to make sure I was rested, fed and watered enough to truly enjoy it.
Saying “No!” to some things may in fact mean saying a more whole-hearted “Yes!” to even better things.
I recently discovered new U.K. guidelines about pacing for people recovering from COVID-19 (courtesy of Homerton University Hospital in the London borough of Hackney). These common sense pointers are useful for heart patients who are learning new ways to pace themselves, too. For example:
“Once activities are planned, then pacing allows people to sustain an energy level until a task is completed:
- “Allow plenty of time to complete activities and incorporate frequent rests.
- Perform tasks at a moderate rate and avoid rushing. Although a task may be completed in less time, rushing requires more energy and leaves less ‘in the bank’ for later activities.
- Breathe easily during activities to decrease shortness of breath.
- Rethink activities with rest in mind. For example, sit instead of stand if you’re feeling tired.
- Allow plenty of time for rest and relaxation. Take a morning or afternoon nap prior to activities or outings to build up energy.“
.
♥
Landscape image: Enrique Lopez Garre, Pixabay
NOTE FROM CAROLYN: I wrote more about how heart patients can learn the fine art of p-a-c-i-n-g in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local 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).
Q: What activities or outings have you learned to say “No!” to that you used to do routinely?
See also:
– Another essay from Toni Bernhard: “Pacing: The Chronically Ill Person’s Best Friend.”
– Are you a priority in your own life?
– The “new normal” – and why patients hate it
– The importance of planning for everyday joy
–“Everybody has plans ‘til they get punched in the mouth.”
.
Heart Sisters 
This topic is very helpful for me.
I relate to all the comments made but have one different issue with my pacing. I have a hard time admitting to myself the seriousness of my condition because I don’t have enough “pain”. Without the pain, I felt I should be able to do more, should be able to say yes more often.
But I get exhausted easily, am short on breath with almost everything I do. I have very occasional tightness somewhere near my chest but it’s quite seldom, so I have trouble myself taking it seriously.
And sometimes I worry that my DRs. don’t take me seriously.
But I had a quadruple bypass 2.5 years ago, then a relapse that showed 3 of the 4 arteries reclogged, I had one stent put in and was diagnosed with Microvascular Disease recently.
So I know I must do better at planning. I’m learning to pace, and slowly accepting my limitations but it isn’t easy. I keep waiting for more pain.
Thank you!
Ann Wheeler
LikeLiked by 2 people
Hi Ann – I’m not a physician, but I can assure you that your observations about feeling that your symptoms are somehow not “enough” unless there is horrible pain are understandable! It’s not true, of course, that you need pain to be having valid and serious symptoms – but understandable.
Reminds me of Dr. Catherine Kreatsoulas’s research at Harvard: she’s a linguist who studies how people communicate and her specific focus is how women describe their cardiac symptoms to Emergency staff (right up my alley!). She describes women who argue in mid-heart attack that “Well, it’s not really chest PAIN, it’s more just pressure or an ache….” and watching Emergency physicians delete the words “chest pain” on the patient’s chart, replacing with “No CP” (= no chest pain) – which can unfortunately mean the end of any further discussion of cardiac causes…
It seems reasonable to assume that bad pain is serious, and lack of pain can’t be that serious. But that’s NOT necessarily so. I recall reading (sorry, can’t recall the study right now but will try to find it for you) that the severity of chest pain does not necessarily define the severity of the cardiac event (in other words, a woman can have significant heart muscle damage even with relatively mild symptoms, and vice versa!)
Because I too share your major symptoms (being easily exhausted and short of breath), I can confirm that they can be and are every bit as debilitating as chest pain (and sometimes even more so).
Take care, stay safe…. ♥
LikeLiked by 1 person
It’s been 8 years since I was diagnosed with congestive heart failure, 7 years since getting an ICD and 6 stents. Those years have been pretty rocky at times, including when I decompensated last year with a very mild case of bacterial pneumonia – so mild the heart failure specialist really didn’t know why it led to decompensation.
I’ve had to pace myself whether I wanted to or not, dropping many previous commitments altogether. Some of that occurred before the CHF was diagnosed – shoulda been a hint, maybe, that something was wrong?
But I’m now finding I can begin to do things that take a bit more energy – mental and emotional, not just physical. While I don’t expect to ever be the person I was before the heart issues finally were recognized (how could any of us be that person again, after these diagnoses?), I am getting enough better to have some hope that I might be able to resume some of those avocations again, or perhaps some new ones. Ones that will make me feel like I can make a positive difference in the lives of others again.
LikeLiked by 1 person
Hi Holly – such a good point about the need for pacing “whether I wanted to or not”. Interesting that you now look back and see that even before your CHF was diagnosed, you knew on some level that you had to drop some of your prior commitments. Self-preservation, maybe?
And I’m glad that some positive signs are now emerging, and that you have more optimism now about being able to do/try more things! I bet you couldn’t have imagined that kind of optimism eight years ago (or even last year when you decompensated.*
I wish more people with newly-diagnosed heart failure (and I also wish docs would come up with another name that’s not so dreadful!) could read your comment here to remind themselves that this does NOT mean the heart is “failing”. You’re already “making a positive difference in the lives of others” just through that important reminder!
Keep on doing whatever it is you’re doing that’s bringing you closer to those happy goals, Holly! ♥
Take care, stay safe…
*NOTE TO READERS: “decompensated heart failure” means a sudden worsening of symptoms like difficulty breathing, leg or feet swelling, and fatigue, caused by severe congestion of multiple organs by a fluid overload.
LikeLike
Hi Holly…One thing that has helped me a lot since being sidelined by low energy levels … I learned about meditation and how we can send healing energies to persons and places that need help. It’s different than just praying for someone and is an activity I can participate in while sitting in a chair.
Blessings!
LikeLiked by 1 person
I’m glad you defined decompensated heart failure here, Carolyn. I had forgotten – so soon we forget – how I wasn’t told what it was or how it might happen or what symptoms to watch for.
And, in my case, the symptom of worsening breathing was hidden by the fact I had pneumonia.
Although my weight was up, it was a slow progression, not anything sudden like I was told to report. I figured it was what I was eating.
So, anyone reading this who has heart failure – tell your cardiologist you need to know what symptoms you should look for that indicate decompensating heart failure.
In my case, I was told quite emphatically after that awful episode to go to the ER if I had pretty much any illness.
Hopefully others aren’t quite so fragile, but you just never know…
LikeLiked by 1 person
Good advice for all patients who have been diagnosed with heart failure, Holly – especially that ‘go to the ER’ warning. Pneumonia is a weasel: it can hide or confuse other warning symptoms sometimes.
Often patients are so overwhelmed (especially at the beginning) that, even if a physician had discussed a future that might include “decompensated heart failure”, it might have just sounded like gobbledygook. A cardiac nurse recently told me that they try not to pile too much info onto patients at hospital discharge, but that is an unfortunate policy… I don’t understand everything about how my car works, by comparison, but before I drove it off the lot, I knew there would be a thick, easy-to-understand owner’s manual in the glove compartment that I could use if I had any questions later on – just in case…
My understanding is that this decompensated heart failure can happen to those who have already been diagnosed with heart failure that’s being well managed; but for about 20% of people diagnosed with DHF, they have no history of heart failure. There are four stages doctors describe in this diagnosis, each stage with its own range of treatment recommendations. The goal of treatment is always to keep people from progressing through the stages, or to slow down the progression.
Please take care… ♥
LikeLike
Hi Carolyn,
You used a very important word in your article “unapologetically”. Before I could be okay with my level of function I needed to stop apologizing for not being the energy bunny I used to be….. to myself and others.
If I have a day that I actually feel I can go “out” any list I have is fluid. I go for the high priority items and allow the ones lower down to wait until next time if I am ready to go back home and rest.
The hardest thing for me is to make any plans until the actual “day of” because each day my body’s presents with a different level of energy some higher some lower, and the heat is a HUGE factor.
Also important for me is the intensity of the activities more than the number. I used to organize a burrito service project once a month…Set up the room, purchase the ingredients, sit and assemble 400 burritos with 12 other people, then clean up while someone else delivered them. I turned the entire project over to someone else.
I don’t feel bad at all …I feel relieved!
LikeLiked by 1 person
Hello Jill – I agree! Learning to become “unapologetic” for taking care of ourselves is the key!!
Many studies have found that women tend towards “sorry to be a bother” responses compared to our male counterparts. One of my readers, for example, described her trip to the ER for an urgent cardiac procedure as just one long string of apologies: “I apologized to my doctor for bothering him about my symptoms, when he told me to go to the ER, my 15-year old daughter was in the car with me. I apologized to her. I then had to go get my husband at work so that he could drive me the rest of the way to hospital – I apologized to him, too. All the way to the hospital, I kept saying how sorry I was for putting my family through all this. When I got to the cardiac unit, I told the nurses that I was really sorry to bother them. When all the heart tests came back, I apologized again to the staff. I also said I was sorry that I had to go to the bathroom so much….”
Really, that story would be hilarious if it were a Saturday Night Live skit, but it’s not funny at all when women seem to believe it’s somehow the correct way to behave!! We have to STOP apologizing for existing…
I’m glad you mentioned how HEAT can be an important factor in planning and pacing. Even when we’re feeling fine indoors, high temperatures outdoors can be such a problem for heart patients (and others with chronic illnesses), so avoiding if possible being out on hot days is a good prevention tool.
Congrats on saying NO to the burritos! Let’s spread those opportunities around to other folks! Speaking of which, next week’s blog post will be about being “indispensable” (or at least the false BELIEF that we are indispensable, that if we don’t continue to do (____fill in the blank), somehow the world will stop spinning on its axis – which rarely ever happens, of course…)
Take care, stay safe… ♥
LikeLike
I used to apologize, every time I emailed my cardiologist through telemedicine, about troubling new symptoms. Often he calls me to get more details and once he said, “You don’t ever have to apologize to me for relaying symptoms. You have an amazing ability to sense when something is wrong and I want to know about it”. I almost cried.
Since then I do my best to remember NOT to apologize…and our team work has kept me out of the hospital many times.
I look forward to your “indispensable” blog… I spent years getting over that one! 😎
Blessings!
LikeLiked by 1 person
I love that response from your cardiologist, Jill! Just what every patient wants to hear (other than that the test results are ‘normal’!)
“You did the right thing by contacting me!”
And isn’t that what he’s there for?
But that just shows you how used to being dismissed we become… I read an online article on email etiquette recently that reminded us never to start an email with “Sorry for the delay in responding…” Better to start with “Thanks for your patience….” This is a habit we really need to practice – instead of saying “sorry” for every little thing!
PS I live in Canada where we have a national stereotype that suggests we Canadians apologize A LOT e.g. if somebody steps on your toe, YOU’RE the one who apologizes to him – for not pulling your foot out of his way in time… 😉 🇨🇦
LikeLike
Grrrrr. Still resisting this one. Don’t like it. I liked and relied on that woman I used to be.
I do pace, know that an afternoon nap is mandatory. But I miss that woman I used to be.
LikeLiked by 2 people
I hear ya, Sara! I too missed the ‘old me’ a lot, especially in the early months and years. Researcher Dr. Kathy Charmaz says that we are grieving the “loss of self” in chronic illness, or what she describes as “our former self-images crumbling away without the simultaneous development of equally valued new ones.” That development of “equally valued new ones” is what takes time and patience.
I now figure that it’s better for my mental health to accept and even embrace reality – hence the need to p-a-c-e….
Take care, stay safe… ♥
LikeLike