Exhaustion: the ‘leaky emotion’ of chronic illness

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters

Like most of you, I’ve experienced my fair share of garden variety pain over the years (caused, in my case, by things like a ruptured appendix, broken bones, knee surgery, or popping out two babies the old-fashioned way).

But none of those even came close to the chronic pain of refractory angina caused by my current diagnosis of inoperable coronary microvascular disease (MVD).  The chest pain caused by this disorder of the heart’s smallest blood vessels is episodic, intense, frightening and resembles what my “widow maker” heart attack symptoms felt like in 2008. Except this kind of pain happens almost every day.  It’s generally well-managed most days by meds (including my trusty nitro spray) and the non-drug, non-invasive TENS therapy recommended by my cardiologist as well as my pain specialist at our Regional Pain Clinic.  But sometimes, it’s alarming enough that I clutch my chest and wonder:

“Is this something? Is it nothing? Should I call 911? Is today the day I’m having another heart attack?”

As you already know if you live with chronic pain like this, pain can literally change your personality. If it’s chest pain, it can also make you feel anxious and worried in a way that having pain from knee surgery never can. No wonder pain is so utterly exhausting!

As Sir John Lubbock correctly observed in his 1894 book, The Use Of Life: 

“A day of worry is more exhausting than a week of work.”

.

Too true, Sir John.

In the blog called Journey of a Tired Heart, the question “Is exhaustion an emotion?” is asked, and then answered beautifully:

“Is exhaustion an emotion? I don’t think so, but is there a state of being more intense than exhaustion?

“I can’t think of an appropriate word to describe it, but it’s the state of physical exhaustion to the degree of leaky emotions.

“You know what I mean: when your eyes are tightly closed and you finally fully exhale, relaxing every muscle in your body and a warm teardrop slides down your cheek. Then another, and another. Just a few though – and it cannot even be defined as crying.”

“It’s not crying.

“It’s all that determination and courage you had to employ to get through the past four hours – at least what is left of them anyway.

“You let them flow, take in a deep breath and then let it out slowly. Just as quickly as they began, they end. No more tears. Just a sweet, wonderful, lifeless kind of surrender that can only be understood by those who have walked the tightrope between life and death.”

Keep in mind that this type of exhaustion is not at all the same as “feeling tired”. It is sometimes described as feeling like having the worst flu you’ve ever experienced.

And exhaustion or crushing fatigue are not only frequent companions of those living with the refractory angina of MVD, but these symptoms can often be among the first warning signs of heart failure or heart disease in general. Such cardiac symptoms often tend to progress slowly over time and we may not even recognize that something is very, very wrong at first. We feel fatigued, gradually unable to exercise and perform work or other basic activities that had once been easy to do.  “I just can’t understand what’s going on with me…” is a common lament.

Few things in life can make us feel more exhausted than living with pain. People living with chronic pain (heart-related or not) typically wake up tired, even after having slept for a long time. For many, pain disrupts sleep, which leaves them even more exhausted. The combination of disturbed sleep and having to endure distressing pain can be draining, leaving exhaustion for much of the time a distressingly common state of being. 

For some tips on managing chronic exhaustion, read 25 tips to manage the crushing fatigue of heart disease

♥

NOTE FROM CAROLYN: I wrote much more about emotions (and exhaustion) in my book “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). 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 30% off the list price when you order).

See also:

Journey of a Tired Heart (a compelling blog about living with cardiomyopathy, heart failure, an implanted defibrillator, and other exhausting things)

Coronary Microvascular Disease: a “trash basket diagnosis”?

The chest pain of angina comes in four flavours

25 tips to manage the crushing fatigue of heart disease

How women can tell if they’re headed for a heart attack

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

.

Published by Carolyn Thomas

18 thoughts on “Exhaustion: the ‘leaky emotion’ of chronic illness”

  1. Having had Chronic Fatigue Syndrome for 27+ years, it was hard to realize that anything new might be happening – but it was.

    I have had a tiny bit of functionality – I write – that allowed me a few hours a day, not to leave the house much – I haven’t done that in years – but to find a tiny life for myself in the writing. Now, I have none – and feel like a zombie and I’m depressed after having three stents become necessary. I have a call in to the cardiologist – hope she comes up with something. This is not a life.

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  2. Hi Carolyn,
    Your site is such an inspiration and the place I go for some understanding of the strange symptoms that have persisted for me after diagnosis of coronary microvascular disease 2 years ago. The reality of intermittent exhaustion that is profound and pervasive has really changed my activity level and ability to do every area of life.

    I thought it was just me having these levels until reading this. Thanks so much for sharing but sorry you have to go through it too. My faith in Jesus has been a comfort.
    Blessings to you,
    Karen

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    1. Thanks Karen – it quite definitely is NOT just you experiencing this intermittent exhaustion! “Profound and pervasive” are just the words I’d use too to describe my own episodes. Best of luck to you…

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      1. I have recently been diagnosed with Coronary Microvascular Disease after repeatedly being told “there is nothing cardiac wrong with you.” I am so profoundly exhausted, and having difficulty doing everyday activities, nevertheless going to work. My question is, does the exhaustion and fatigue ever go away or get better? It seems like no one around me understands just how I feel.

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        1. So sorry about your diagnosis, Tracy – although having a diagnosis of anything after being told it’s not heart-related is often in some strange way a relief! In answer to your question – will symptoms of exhaustion/fatigue ever go away/get better – nobody can answer that except to say “it depends”. You might start by taking the simple Duke Activity Status Index survey that helps to outline which daily activities you are able or not able to do. This may help your physician (and others close to you) understand the reality of your ‘new normal’.

          I just returned from a five-day trip to Mayo Clinic. A few years ago, I wouldn’t have imagined that this trip would even be possible for me. But since then, I’ve learned through a lot of trial and error (through my pain specialist and our Pain Clinic self-management programs) useful tips on p-a-c-i-n-g myself to help minimize the stress that is almost always a trigger for MVD symptoms (including exhaustion). Continuing to work while feeling profoundly exhausting is very likely a factor in your exhaustion.

          If you’re having chest pain symptoms as well, you may also find that being in pain is absolutely exhausting, so learning to manage the pain of MVD is a good tool to have. So if you have a Pain Clinic in your local hospital, request a referral from your physician. For example, we know that emotional stress tends to trigger bouts of crushing fatigue in MVD far more often than jogging or a really brisk walk does. Every patient is different – your only role now is to become a world expert in your diagnosis as you learn as much as possible. Best of luck to you…

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  3. Your comments are very meaningful to me. I experienced my first heart attack in the beginning of July 2015. I and my family have done exhaustive research in understanding this disease.

    Once out of the hospital and the round of Cardiologists, I jumped into my former daily routine….. and yes, you guessed it, after a full day yesterday I had severe chest pains, racing heart that needed 2 Nitroglycerin, followed again two hours later with the same symptoms and Nitro again, followed by Zantac in order to calm my racing heart. Today I had to rest all day in order to feel somewhat normal.

    I have learned to pace myself and will in the future! one must realize and take into account that life has changed somewhat and we need to heed our needs……

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  4. Very interesting. I do feel like that. I also feel after I have experienced symptoms and had them checked to discover that everything is ok that I imagined the symptoms in the first place and become a bit paranoid. Though I fully know I experienced them, the panic takes over and makes it worse, then feel a bit stupid afterward.

    Fortunately my cardiologist and his team are great and have never believed that my symptoms are paranoia. I guess it’s something I am still coming to terms with 3 years down the line. The exhaustion can be all encompassing and sometimes though I don’t like it, you have to give in and rest.
    Hugs,
    Sara

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    1. Sara, you are so lucky to have a supportive cardiology team. This makes all the difference, doesn’t it? And resting when you’re experiencing this kind of “all encompassing” exhaustion is not “giving in” – it’s just good self-care. Sometimes fighting off that need to rest can even make it feel worse!

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  5. I recently went to the ER complaining of exhaustion that could only be compared to the level of exhaustion I felt following my heart attack 5 years ago. Thankfully, after an overnight stay, they determined that it was dehydration that was causing my symptoms. Those of us that take Beta Blockers and Water pills like Lasik need to take greater care to hydrate ourselves especially in high temperatures.

    I was physically exhausted from a rough month from a physical and emotional move, high stress and thought I was drinking enough water, but apparently wasn’t. Now, I don’t go anywhere without a water bottle in my hand.

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    1. Thank YOU for your poetic description of exhaustion as a “leaky emotion”. I’d never heard it referred to like that until I came across your blog, but the term instantly resonated with me! Take care…

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  8. Thank you for writing this. Chronic pain intensifies my depression and makes me moderately suicidal (since stopping opiates).

    Sometimes it’s hard work to recover the meaning and joy in life.

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    1. Thanks for sharing your perspective here. If you’re having “moderately suicidal” thoughts, please make an appointment with a counsellor, therapist, pastor or other professional to help you manage them. Pain and severe depression are like the chicken and the egg: which comes first? One can cause the other, and vice-versa. Each is known to be linked to the other. If your community has a Pain Clinic, I hope you will also ask your doctors for a referral to see a pain specialist.

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      1. I have a world class pain specialist at Duke. Wanting to die is complicated. It does not go away. But I have children, so not an option. Very hard life + mental illness + chronic pain + chronic (GI) illness + HUGE stigma = a world of hurt and pain. I do my best and try every day to do better, but never enough. Wish I could work. I am so alone and basically fail at everything. No longer afraid of fire, having been burned. No longer able to hide the fact that I am sick. My children suffer.

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