You’re not always going to feel this way

~ Carolyn Thomas
by Carolyn Thomas   ♥   @HeartSisters

While binge-watching Season 4 of Grace and Frankie on Netflix the other day, I heard Frankie’s sweetheart, Jacob the Yam Man, trying to calm her down with a statement that has proven to be very true for me since my heart attack:

“You’re not always going to feel the way you do today!”

I think I’ll go embroider that on a pillow. . .           

During the early days and weeks after I was discharged from the hospital, I was a train wreck. Worse, I was unable to envision a future that could possibly be any less bleak for me.

I’d been misdiagnosed in mid-heart attack in the Emergency Department (“You are in the right demographic for acid reflux!”)  by a man with the letters M.D. after his name. I’d suffered worsening textbook symptoms that I was trying to ease by chewing Tums and Gaviscon. I was finally appropriately diagnosed in that same Emergency Department/different doctor (“I can tell from your T-waves and other diagnostic test results that you have significant heart disease”!)   My ongoing post-heart attack chest pain had not yet been diagnosed as coronary microvascular disease. Two heart conditions for the price of one. And now I was back home, recovering after my hospital stay and trying desperately to make sense out of something that made no sense to me.  Unlike cancer patients who fear the external evil that has invaded their bodies, heart patients like me can suddenly fear the danger that lives within.

Dr. Stephen Parker, a cardiac psychologist in Alaska and survivor of several heart attacks himself, described his own reactions to his first heart attack as “swirling emotions”:

  • relief at survival
  • disbelief and anger that it happened
  • grief for everything that was and will be lost
  • gratitude to those who helped
  • extreme vulnerability in a previously safe world
  • fear of what the future might bring

For an active healthy person like me, suddenly facing those “swirling emotions” felt horrible. And exhausting. If anybody had sat me down then and told me “You’re not always going to feel the way you do today!”, I would not have believed them.

The freshly-diagnosed patient often goes from the shock of being hospitalized to the shock of being sent home before we’re feeling quite ready to return there. 

I’d been cared for in a world-class hospital by expert cardiac professionals whose 24/7 job was to take good care of me and my heart – but once I got home, every twinge in my chest (“What was that? Is it something? Is it nothing? Should I call 911?”) now felt like a warning siren, alerting me that a second heart attack was imminent.  Inside, I knew with a cold dark certainty that I was likely going to die. Probably tonight.

I became so convinced of my imminent death that I somehow lacked the ability to make plans.

Dr. Stephen Parker describes this odd phenomenon as a foreshortened future, a frequently observed element of Post Traumatic Stress (which turns out to be surprisingly common among recently diagnosed heart patients).  In other words, after a traumatic cardiac event, the patient “’no longer expects to have a career, marriage, children or a normal life span.”  I instantly identified with Dr. Steve’s own story:

“Three months after the heart attack, I went to Home Depot to buy something for the house. I walked inside, saw the plethora of nice things to make a nice house, and started feeling extremely depressed.

“What was the point?  I knew I was going to die within a short time.  

“I walked out without buying anything. I could hear a critical voice in my head repeating: ‘Get over it.’ But I could no more get over it at that point than I could fly to the moon. (Which is about where my mind and soul were hanging out). There is nothing like the sense of a foreshortened future to un-motivate behavior.”

Many of those “swirling emotions” I was feeling in those early days were overwhelmingly tied to the new and strange physical changes I’d never experienced before. After I was discharged from the hospital, I experienced crushing fatigue, for example. Even taking a shower now required a 20-minute lie-down afterwards to recuperate. I had to lean on my son Ben’s arm just walking slowly to the corner and back. I needed to take naps!  What was happening to me? And when would I get the old ‘me’ back?

I often recall the bizarre habit I developed back then of tidying the apartment every night before bedtime – taking out the recycling, shining the taps, sweeping and mopping – so that if I died overnight, the place would look good when the paramedics came to collect my corpse in the morning. Night after night, week after week, I was preparing for my own death.     See also: Struggle Care: a New Way to Rethink Housework

Much of what I was going through (and what Dr. Steve captured so eloquently in his writing) may still seem unfamiliar to our cardiologists.  Cardiologists are the ones who complete a successful cardiac procedure, then move swiftly on to the next patient in need of care. And our“swirling emotions” are not what cardiologists are trained to focus on anyway.

Cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once described her colleagues’ response to psychosocial symptoms in their heart patients like this:

“Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.”

Nobody expects cardiologists to act as psychotherapists for heart patients. But cardiologists know – or should  know- that new onset anxiety or situational depression hurts so many heart patients once they get home. We know that heart patients who feel anxious or depressed are less likely to take their medications, exercise, attend Cardiac Rehabilitation, quit smoking, eat heart-healthy meals, or follow any other ‘doctor’s orders’ to help prevent another cardiac event.   See also: When Are Cardiologists Going to Start Talking About Depression?

We also know that how patients are discharged from the hospital has far-reaching effects on recuperation, yet despite this, “hospital discharge summaries are often poorly constructed, incomplete, delayed, misdirected or unhelpful.”(1)

How we can stop feeling the way we do. . .

It can be surprising to newbie heart patients when they meet other heart patients who are walking, talking and NOT looking like death warmed over. 

They are reminders that our diagnosis need not permanently define us. One of the most common sentiments expressed by my Heart Sisters blog readers is some version of “I thought I was the only one. . .”  (One woman even wrote: “OMG! Are you ME?”)  What she was really expressing was the relief we feel when we realize that there’s a whole community of people out there who have already gone through what we’re now experiencing. These people can often understand far more deeply what that patient experience is like than our family or friends or even our doctors.

Find those people. Learn their stories. Pick their brains. A good resource for women living with heart disease is the online support community called WomenHeart Connect hosted by WomenHeart: The National Coalition of Women With Heart Disease. This site was a lifesaver for me in those dark early months, post-hospital discharge in 2008. Membership includes over 60,000 women around the world who, like you, have also been diagnosed with heart disease.

And if you’re a heart patient here in Canada, check out the list of online peer support communities and resources on the Canadian Women’s Heart Health Alliance Canadian Women’s Peer Support Heart Hub site.

Researchers in Spain who have studied the four predictable phases of cardiac recovery report how patients describe moving into this later phase(2):

“We become more clearly aware of what has happened to our bodies, so are able to become more active in quality-of-life planning for our own future. We cannot do this planning until we reach that important awareness phase. We can now accept a “patient identity” as merely one of the many features in a person’s life – NOT the only or even necessarily the most meaningful feature. We can start to imagine and create future goals. We’re more effective at information-seeking. We begin to see our healthcare professionals as allies now, and ourselves as active members of a larger care team.”

The truth is that no matter how bad things are right now, our feelings do inevitably begin to change.  (Even Dr. Steve was likely able to go shopping at Home Depot again).  This change doesn’t magically bring rainbows and sunshine; it just means that the way we’re adapting to this diagnosis over time feels less raw.

And as I wrote in my book (A Woman’s Guide to Living with Heart Disease, Johns Hopkins University Press):

      “In my experience with heart disease, I learned to cope with crisis by coping. I learned to adapt to crisis by adapting. I learned to roll with the punches because, like most of us, I’ve practiced rolling with so many figurative punches during my life.

“It’s not because I needed this crisis to become a better person and not because the diagnosis itself was some kind of a gift, but because human beings have a remarkable ability to adjust to almost anything in life.”

As those early weeks and months passed, I eventually began to realize that, despite the bleak sense of perpetual dread that had enveloped me at first,  I was still alive!  Indeed, weeks and months had passed and I had not died as anticipated.  I had to learn to stop ruminating about all of the scary “what ifs?” that were part of my own “swirling emotions”. 

I eventually stopped cleaning the apartment every evening in preparation for dying, and instead I tried to focus on living. I reminded myself, as Jacob the Yam Man assured Frankie:

“You’re not always going to feel the way you do today!”

♥

1. H. Newnham et al. “Discharge communication practices and healthcare provider and patient preferences, satisfaction and comprehension: A systematic review.” International Journal for Quality in Health Care, Volume 29, Issue 6, October 2017, Pages 752–768.
1) G. Graffigna and S. Barello, “Spotlight on the Patient Health Engagement model : a psychosocial theory to understand people’s meaningful engagement in their own health care.” Patient Preference & Adherence, 2018 July 19; 12:1261-1271.
Window image:  Geralt, Pixabay

NOTE FROM CAROLYN: My book, A Woman’s Guide to Living With Heart Disease is available at your local library or favourite bookstore (please support your local neighbourhood shops!). You can also order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press https://www.press.jhu.edu/books/title/11800/womans-guide-living-heart-disease (and use their code HTWN to save 30% off the list price).

Q:   What was the tipping point when you knew you were feeling  differently about your diagnosis?

Published by Carolyn Thomas

20 thoughts on “You’re not always going to feel this way”

  2. January 21,2022. Is my 1 yr heartanniversary. I am lost for words.

    None of what I went through seems real. When I heard “open heart surgery” my first thoughts were “Okay get it done, I have a family to take care of”. That was my main focus. Then “Who is going to take care of me?” Not that I don’t have a husband or sisters, I just felt take control of it all and you will get through this.

    Then I got home. I was not ready for the limitations that my body had. When my doctors told me it will take close to a year to feel like yourself, my life felt like it over. But I can say today that I feel great!

    I always used the word good when I was asked “how do you feel?” It was the first of October when I started to have more energy, my chest did not hurt every single minute. And I just felt all around lighter.

    I turned 60 at the end of October and I was able to see my son graduate from college and move back home. He has the smile back in his eyes when we are together, no longer the look of concern.

    I don’t know what is in my future, but I have slowed down to enjoy life. I spend time with family and friends.

    My husband and I are enjoying the time with our son cuz we know his dreams are going to take him out of state at some point.

    I found this quote, and may turn it into a tattoo:
    “I’m the HERO of this story!!!”

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    Reply

    1. What a milestone you are about to celebrate, Susan. I call this the “heartiversary”.

      Your doctors were correct when they predicted it would take about a year for you to really start feeling more like “you”. Some people take longer, some not-so-long. Every heart patient is different and so much depends on other factors (age, general health, family support and/or pressures, how serious you are about taking your meds, exercising, etc.)

      I can imagine how wonderful it was for you to watch your son graduate – an event you may not have lived to see had it not been for your successful surgery a year ago. It sounds like you’ve learned a lot during this past year that will help you even further in many other ways in your future!

      And you ARE indeed the HERO of your story! Love that. . .

      Take care, stay safe, and HAPPY 1st HEARTIVERSARY to you! ❤️

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  3. Hi Carolyn, I am so glad to be reading your book and all the helpful blogs and comments on this site. I am a new heart sister. I had a ‘widow-maker’ heart attack 2.5 weeks ago and a stent put in.

    I too live in Victoria and the staff at Royal Jubilee Hospital’s CCU were wonderful. I have that crushing fatigue and am still very much in shock, as I was always told I was low risk for heart problems. I thought my symptoms were gastrointestinal or something else.

    I feel very grateful to have so many resources and support available.

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    1. Hello Kathleen! Welcome to the exclusive club that none of us ever wanted to join! You’re still in very early days at 2.5 weeks, so no wonder you’re still “in shock” at this point. . . Just take it easy, get lots of rest (including lovely naps!), read a lot about your diagnosis – and when people offer to help you out, remember that they wouldn’t be offering if they didn’t really really want to be helpful at such a strange time.

      P.S. When I used to volunteer at the now-closed Patient & Family Resource Centre on the cardiology floor, the cardiac nurses told me that a member of the Saudi royal family had come all the way to the Jubilee Hospital to have his cardiac procedure done here. I always tell my audiences to try to have their heart attacks here in Victoria – where we have truly world-class facilities and expertise!

      Take care, and stay safe. . . ❤️

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  5. Hi Carolyn:

    Yes, I did reluctantly drag myself into Home Depot about two years after the heart attack. After surviving two years, I figured I might be able to make it another month or two, so the house needed to be repaired – for others at least.

    Frankly, the sense of the fore-shortened future has never gone away — although sometimes I almost plan for several months ahead. This sense of imminent mortality does, however, lead to more carpe diems and the appreciation of just being able to breathe.

    Thanks for your continual work at this.

    Liked by 1 person

    Reply

    1. Hello Dr. Steve – that’s good news about Home Depot! Just as I would have predicted. . .

      I have a similar view of my own future plans. None of us can possibly predict HOW or WHEN we’re going to die. We know that heart patients like us do have a significantly higher risk of dying from heart disease than non-heart patients do – but I could get hit by a bus tomorrow, for all I know.

      Once we’ve veered that close to dying, it makes those carpe diems more meaningful…

      Take care, stay safe. . . ♥

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  6. I knew I was feeling differently about my diagnosis the day I ventured across the street solo with my walker, Red, to get coffee at Starbuck’s. I asked a passerby woman in her vehicle if she would take my personal celebration photo which she did.

    And, she asked to join me for coffee. She did. I will never forget!😘♥️💕💓

    Liked by 1 person

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    1. That’s a great story, Roz! I hope you have that photo out and framed in your home – milestone moments like that need to be celebrated and shared!

      Happy Holidays to you – take care, and stay safe. . . ♥

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  7. Thank you for expressing all the daily fears after a heart journey, partly similar to mine!

    My angina starting in January this year was also diagnosed, all spring, as reflux until June when it turned out one of my coronary arteries was totally blocked. A PCI at midsummer, with four stents, (complicated, took two plus five hours) was a traumatizing experience. Lasted only three weeks, when I had an in-stent thrombosis. Total block again. Ambulance to heart department.

    Reason for this new heart attack was I had to stop anticoagulants because of total collapse of my thrombocytes (due to my underlying condition CLL, chronic lymphatic leukemia.)

    This fall I have been trying to rehabilitate myself with daily walking. I can walk 300 meters, then stop for angina for a little while, and then carry on. Now waiting for doctors to figure out if it is too risky to try to reopen the clogged stented artery, or maybe open another artery that is working, but narrow. If I dare…..

    How to carry on a normal life during this circumstances? I try to be outside for at least one hour every day. I do exactly the same tricks you describe (routines like taking out garbage). I also find it helpful to pretend it is getting better, even when it is not!

    One day at a time. Planning and doing things I still can do. Acceptance is a hard thing! Balancing between being so very happy still being alive, and the fear of not making it. I am new to this site, and find comfort in reading and gradually learning more and more

    My best wishes to you all!
    Christina

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    1. What a year you have had, Christina! I’m so glad you have found some comfort here on my Heart Sisters blog. As you can see if you read more posts and their associated reader comments, you are NOT alone. Thanks for taking the time to leave your comment today!

      Thank you also for raising such important points e.g. the importance of trying to rehabilitate yourself with walking (as one researcher told me, “What the heart needs now is work, not rest!” ) I loved your determination “to pretend it is getting better, even when it is not!”

      “BETTER” is relative, isn’t it? When deciding if I’m feeling well enough for an activity or outing that I know will be exhausting, I like to weigh the joy potential in that activity (e.g. playing with my grandbabies) vs the resulting exhaustion later on. But most days, I suspect I’m going to be tired anyway at the end of this day – so I might as well say YES to as much of the joy as I can manage in the meantime!

      Happy Holidays to you – take care, stay safe. . . .♥

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      1. Thank you Carolyn! Yes it is really important to chose what is relevant to spend the energy on. Children and grandchildren are always my priority. And being outdoors every day.
        Warm regards,
        Christina

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  8. Back in the 1960s Elizabeth Kubler-Ross described 5 stages of grief we go through after the death of a significant other:
    Denial
    Anger
    Bargaining
    Depression
    Acceptance

    Another version of 7 stages of grief adds Shock at the beginning and a bit of Guilt before depression.

    I have found that this process of grief is undeniably part of losing ANYTHING of value, not just in death.

    Losing one’s current state of health to an unknown force such as heart disease requires a grieving process. In order to build a new future we must come to a state of acceptance of where we are now.

    Every person goes through the grief process at a different speed. However, it’s important to recognize if you or someone you care for are stuck in one phase and need professional help to move on.

    I had a crescendo of multiple heart issues that occurred in sequence over 5 years. I would just survive one heart crisis and start to move on, and another occurred. Definitely creating a PTSD effect! It was not until my heart became “stable” for several years, that I could move completely through all the stages of grief and accept my “New Normal”.

    Thanks for the Sunday Morning Heart Think you provide us. I always look forward to it!

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    1. Happy Sunday Morning, Jill – I appreciate that Kübler-Ross list of grief stages (although some psychologists have pointed out that her research and her now-famous book “On Death & Dying” were focused on terminally ill patients facing death, not on bereaved people after a death). Whatever critics may now say, however (everybody is a critic!), GRIEF is the operative word – and that can happen whenever a deep life-altering loss occurs. I think many of us are grieving the loss of our pre-COVID “normal” lives.

      Your five-year “crescendo” of serious heart issues must have felt like you were drowning! As you (and also the Spanish researchers) point out, patients need to “become more clearly aware of what has happened to our bodies” before moving on and healing can occur. We need that pause to finally catch our breath.

      Happy Christmas to you – take care, stay safe. . . . ♥

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  9. I think it is a hard thing to realize it takes time to live alongside something that changes life in so many facets. It took me the better part of 2-3 years to live proactively, and be aware of my triggers and best ways to react. I recall thinking, I just want to live ten more years to see my son graduate and my daughter be older.

    Now I am 11 years out from this jumping me from behind. I have surpassed the decade I hoped for and know that I can live with this as best I can. I embrace the days and in many ways this made me more aware of life than death. I had to go from calling this thing “The Beast” to making friends with it and embracing what life means daily.

    Thank you, as always for your support and shared words, Carolyn.

    ❤️‍🩹Annette

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    1. Thank you for sharing that unique perspective, Annette. I suspect that the future goalposts keep changing as the years go by: e.g. you had hoped for 10 more years, yet here you are 11 years later – and you’re likely now eyeing new future goals of survival.

      NOTE TO READERS: you can learn more about Annette’s experience of living with “The Beast” of coronary microvascular disease in her own words while presenting at an American Heart Association event.

      Happy Holidays, Annette – Take care, and stay safe. . . ♥

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