Writing poised under the Sword of Damocles

Pile of rocks on mountain. Text: What is ready to fall on your head? Alicia Butcher Ehrhardt

UNSTABLE ROCKS WILL CRUSH YOU

There are too many things going on in my life, and all of them critical.

But the thing that is making it hard to write right now is one I hadn’t expected: I can’t remember quite how I felt BS (BEFORE STENTS), when I ONLY had CFS.

And by ‘feel’ in this instance I mean sensations in the BODY.

What sensations am I having that are worrisome?

I’m writing about these because they are both common and keep happening.

I’m doing far more exercise (even in my pitiful little amounts) that I was doing before. Part of it has involved a rowing motion with my arms against a resistance, which uses the chest muscles (pectorals) in an unaccustomed way.

So it isn’t really surprising that these muscles have a spot or two where there is sensation. By which I DON’T necessarily mean pain. Just a tightness that is in the muscle, in places which vary but are repeatable. Over and above the left breast. Outer, center, inner – is what I call them. Once of them seems to be relieved by burping. There are one or two similar spots on the right side – but the right side is dominant, and the muscles may be more used to being used. So, less noticeable?

Are those spots connected to the stents? Or are they simply the same spots on the same muscles – because that doesn’t change. Are they INSIDE the ribcage? Or outside, in the overlying muscles. It’s hard to tell.

There is a slight shortness of breath – when I climb a bunch of steps in a row. Or walk a longer distance than usual unsupported, such as when I walk from the house to the car. Or walk across the lawn to the mailbox and back. The heart rate can go up noticeably – until I sit down and let myself relax. I should expect SOMETHING when I do that – when is it too much?

There are muscles in my upper arms which get a bit weird – sometimes one will make it impossible to sleep because it waits about 6 seconds, and gives me an electric shock – for very long times, until I get up and do some range of motion exercises and some stretches and maybe eat something, and sometimes take ibuprofen (I’m trying to minimize NSAIDs, so I resist).

The question: are these significant?

All of these things could be symptoms. Of clogging arteries. Of something about to happen again. Of something not quite right.

But the thing is that they are not up to the level of being ‘reportable’ – or, heaven forbid, calling the doctor about on a weekend, or going to the ER.

I feel I’m on permanent ‘symptom watch.’ I’m waiting for the symptoms to get worse before doing something, in the same way I should have done something when the shortness of breath happened BS.

They used to drive me crazy in the hospital asking me to rate my pain. For someone who lives with a fair level of constant other pain, it is difficult to choose the higher numbers on the scale, and I’m aware of both minimizing and exaggerating as possibilities.

So, not being able to say ‘this is significant,’ and instead being in ‘wait and watch’ mode continuously is stressful. And stress is bad.

It would help if I could remember which of these were life BS

Standing has been a problem for years, and causes pain. So is my exercise making that worse? Or is something more nefarious going on?

If I walked with the walker BS, I often had pain the next day – I’m supporting part of my body weight with those chest muscles and arms on the walker.

I did as much exercise as I could do prudently before – including a lot of isometrics, which involve clenching a muscle and holding it. I know there were times when I did more than usual, and really noticed it.

And I used to ride the bike, too. The next day I usually felt it.

But I had no reason before to make an accurate record of pains and locations – my modus operandi has always been to ignore most of this stuff as much as possible so as not to waste energy on what I couldn’t change anyway.

PTS anyone? Post-traumatic stress?

It’s one of the major symptoms, being hyperalert, and wondering and worrying about things which may or may not be triggers.

Always being on alert is more than exhausting.

Wondering exactly where on the continuum you’re supposed to do something wears you down. That and wondering if it’s new/real/important. Or ignorable.

So I’m sharing with my blog, and hoping that noticing and documenting feeling physical and mental is enough to disarm them – and that the PTS is slowly going away as I do so.

I really don’t want to have to find someone and take the energy to explain all this stuff to.

Thanks for listening, if you got this far. Share if it resonates.

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9 thoughts on “Writing poised under the Sword of Damocles

  1. joey

    These are valid concerns, ones I would mention at the doctor.
    As a person with anxiety disorder I am forced to ignore a lot of things, especially sensations in my chest. See what I did there? Sensation. Not pain, sensation. My doctor told me if at any time my chest sensations felt like gall stones (I’ve had) or worse, and do not change or lessen with change in activity or position, that’s pain and I should go to the ER. Otherwise I’m best off realizing that breast tissue is weird and amplifying, core muscles are engaged over and over again in the course of a day, intestines get around, and it’s not something to worry about. So I do and say that a lot. I might mention to my family, “This sensation in my chest is worrying me.” Then I, or we, or someone will mention ways I may have used the muscles. (Rowing would be a big one, I’m sure!) Excellent exercise!
    But I don’t know if you should be handling yours the same way, because stents etc. Should you feel your stent? IS that a thing? To be able to feel it, or to have those sensations because of it? I think I’d call the doctor and ask.
    For what’s it’s worth, my chest sensations are right behind my right breast, and just above, near the sternum of both sides. If I get distracted from the chest sensations — usually with housework or animal care, I don’t notice them anymore. It’s only when I’m at rest. People think I’m such a busy bee, but it’s 90% trying to stay physical and not in my head. I was like that long before I knew I had the GAD. Nervous energy, they would have called it before.If I’m not up, I need to be typing, sewing, petting, or lost in a book or show. I have to distract myself from myself. *sigh*
    Hyperawareness is a HUGE part of my life and I’ve had to stop obsessing. A lot of people seek to be more in touch with their bodies, but well, you know. Over-feeling.
    I think it’s wise to write your symptoms out like this.

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    1. Alicia Butcher Ehrhardt Post author

      I like the discussions which ensue from these posts. You do the same thing I do, asking yourself if there’s anything you did that might be responsible for the sensation.

      You can’t feel the stents. You can only feel if the heart or arteries spasm for some reason – and the heart can’t work if blood doesn’t get to IT, the pump. This goes on most of our early life without a thought from us. Fast, slow – adrenaline and relaxation. I’m finding that once you start paying attention to all these sensations, it’s hard to stop.

      I have no desire to talk to ‘the doctor.’ I don’t trust doctors in general, and ones who have lied to me in particular. I trusted a bunch of them to know what they were doing. That went badly, even though I’m sure I’m alive because they eventually figured it out. It should have taken 2-3 days; it took over two weeks. They keep telling me I have a congenital anomaly – which simply means that humans have a variety of variations – and mine is about 1/200, and you’d think if all you do is cardiology, heart anatomy and its normal variations would be important to know. ‘Congenital anomaly’ is nuanced to mean ‘damaged from before birth’ but I’m apparently not that unusual. Not from what I’ve read since.

      So I’ll live with the anxiety, finding causes if possible. I started from many years of CFS, which includes all kinds of things like pain, exhaustion, brain fog, etc., and I hope I now know what actionable chest pain feels like. It could be even different next time, but I’m sure once you have some stents, they know your particular anatomy better (and have films on file).

      I can’t tell you the mess in my husband’s chest – first they did a quadruple bypass – two with arteries and two with veins. Bypassing means they went around clogged arteries. Then, later, when the two vein grafts failed, they went back and OPENED THE ORIGINAL BLOCKED ARTERIES WITH STENTS. I can’t understand how you can reopen an artery that has been clogged for ten years. But he’s alive – and is going for a 20-mile bike ride tomorrow.

      It’s not as black and white as you’d like. I read somewhere that women’s plaque is less opaque and harder to see where blockages are – maybe that’s what happened.

      The sensations? I’ll just watch and decide what to do if they get bad. As you do.

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      1. joey

        I too, enjoy the conversation.

        A dr told me once that my heart was one of the more tilted she’d seen. I was hooked up and I gawked at her wide-eyed — WHY would you say that to an anxious woman attached to cardiothings? lol Gah, she said it was not a worry, that my heart tilt wasn’t textbook, but it was working beautifully. I love her, stranger doctor I’ll never see again. Such good news.
        My mother had some sort of congenital diverticulitis that gave her hell for almost six months before they found it. She said the dr told her to tell me I need to be aware of that, in case it’s genetic. Good gravy. People say the worst things.

        That’s pretty amazing about your husband. Modern medicine. Amazing.
        Stents are amazing, of course.

        I’m glad you share your journey.

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        1. Alicia Butcher Ehrhardt Post author

          That was the main reason I went in confiding in that set of cardiologists: he’s doing fine after 18+ years. But he is a man (most research is done on men), and sanguine in temperament – little fazes him.

          And, dad blast it, he didn’t get side effects from most of the stuff they had him on. Though, apparently, he was on metoprolol when it was still Toprol – and it gave him problems after the bypass, and they switched him to something else. And our daughter takes it – off label (beta blocker). Weird – we’re all in the same family.

          I think what’s happened to me shakes his confidence somewhat, as he was the one sending ME all the research papers, INCLUDING the ones against the very meds he takes. Of course, he had to listen to my complaining bitterly about all that stuff, and was delighted I found the paper supporting my view on the stents (I found that one – finding the right research title can be tricky). If you’re a research cardiologist, you know all that stuff, and know the places to look and the main papers and the terminology (‘not inferior’ to something actually means ‘just as good OR better than’), which I find deceitful.

          His stents are older than mine, so they’re from a previous ‘generation’ – and not as good as mine, but holding up fine. We think.

          Just because an intervention gives you 20 years doesn’t mean that at the end of that time you’re ready to go. I haven’t asked the question, ‘how long are these stents supposed to work?’ Probably no one can tell what would cause the same thing to happen again – hope it will take another 67 years, and I won’t have to worry about it.

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  2. Nita Thatcher

    It is a conundrum. I have severe shortness of breath and several different kinds of arrhythmia (all benign) which kick up acid indigestion and tightness in the chest. I am never quite sure if something new is happening or if it’s the same old stuff associated with the central nervous system and ME/CFS. I have decided, whether rightly or wrongly, that in my case if I’m having a heart attack the pain and symptoms would be so noticeable and so severe that it could not be ignored or thought to be anything else. Just made up my mind that would be the case and decided to take it as truth. Only thing I could do that was not crazy-making. If you are doing more now, in terms of exertion and stress, you are likely having more ME/CFS symptoms of one sort or another. Your body has to accommodate that extra use of energy by using less energy somewhere else and that could mean weaker muscles or a whole myriad of things.

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Nita.

      I figure I now know how a clogged artery presents in my body (I will assume if it happens again it will be similar, just for the heck of having an assumption), and it will give me significant shortness of breath and significant pain.

      It’s all I can do – I can’t afford to live stressed – that’s bad, too. Until then, I will try hard to ignore the minor stuff, and seek help if I can’t.

      I know I’m going to continue to push the exercise – in the short bursts and staying under my anaerobic threshold – so there will continue to be pain. And the walking exercises will create their own pain.

      The new rule: IF I can come up with a non-cardiac reason for the pain (exercise, not enough sleep, leaving the house too many times, too much walking) and I don’t feel much worse overall, then I will ignore.

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  3. Catana

    In the “before” time, I was accustomed to random pain, mostly minor and short-lived, as one of the symptoms of fibromyalgia. Now that I’m asked about chest pains with every doctor visit, how the heck do I know what’s fibro and what might be my heart? Minor, but on the left side? Could be either. Almost grateful on days when fibro is making its presence widely known, so I can ignore left-side twitches. But how would I really know if it was more serious? Definitely crazy-making.

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    1. Alicia Butcher Ehrhardt Post author

      I love it that you understand; I hate the reason WHY you understand.

      I’m continuing my exercise, and my stretches, and my attempts to push the leg muscles and strengthen my lower back, because I think they’re good for me overall, and I’m not going to walk better just by wishing.

      But definitely crazy-making.

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