I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

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Thursday, 1 September 2011

Exercise ECG

It's done, it's finished, and I don't want to think about it anymore... once I finish writing this. Ok, maybe after my other health care people re-interpret the results for me, because at the moment, they are absolutely meaningless.

My initial base-line measurements were all apparently quite normal. Yay. I started off pretty well on the treadmill, although I did tell them that it was faster than my normal pace. After 6 minutes, I was holding on so tight I don't think they could've pried my fingers off, and my brain had turned off all conscious thought, and all I could do was hold on and keep my feet moving. I practically fell on the bed with my eyes closed, and I honestly don't know how long I stayed there.

While I was lying there, they kept asking if I was dizzy, and I'm not sure if I actually shook my head, or if I just intended to. Finally, I was able to croak out to my Dad (thank goodness he was there) that it wasn't dizzyness, it was a full-out crash. I was eventually able to sit up and explain what had happened, and how all cognitive function basically shut down. But since that has "nothing to do" with cardiac function, I don't think they knew what to do with that information.

When the doctor came in to give me the results of all the tests, he said that I have a beautiful, young heart. Yay! He also said that the 48 holter showed nothing terribly unusual, even when I reported palpitations. That once or twice they saw spikes, of up to 140bpm. I don't know what that means. Finally, he said that the exercise test results were consistent with de-conditioning, and that I would benefit from more exercise. He was nice about it, and respectful enough to say that he didn't know enough about ME/CFS to know what my limits were, but I felt that he was saying, in a veiled way, that he believes I do not want to get in shape, or that I am scared to get in shape.

I'm not offended by that, and I do appreciate both his honesty, his lack of awareness of my condition, and his thoroughness. Now I want to go over those results with my own doctor, and especially with my naturopath, who is the expert in ME/CFS on my team. Then I will know what they really mean for me.

Am I de-conditioned? Yes, I sure am. Is that by choice? Uh, no. Not at all. Would I like to change that? You bet. But I want to do it in a way that makes sense, that will work with my condition and not against it. There is a lot of interesting research happening now, having to do with VO2 levels (whatever those are) and abnormal anaerobic response in the muscles of CFS patients. So I guess that sometime soon I will have to really start looking into that and figure out what it all means for me.

I finally figured out, though, what it is about doctors appointments, especially with specialists, that drains me so much, and why I rarely leave feeling good. I was on a forum, talking about not wanting to do this test, and about my experience with my last round of tests, and Debby, who often speaks my words for me, explained it really really well. This what she helped me see:

Most of the time, we go about our business, and we get used to living at a certain level of functionality. We get into routines, and we do our thing, falling into auto-pilot. Then, when we have to see the doctor, it's a reminder that we are sick. It's a harsh reality-check. The build up to the visit is an emotional roller coaster, wondering what they're going to tell us, if we're getting better or worse, or if they've found something in the latest round of tests. And since my nervous system is out of whack, heightening all emotions, the build up is actually fairly intense. All I can say is hooray for my therapist, who always asks me to really examine the realistic worst case scenario, which strangely enough always makes me feel better. Then the visit takes place, it's done, and we're left with whatever news (or non-news as is more often the case with me) we've been given, and dealing with the come-down from the emotional build-up.

So here I am again, with no real news. My heart is fine, which ought to make me very happy. But the rest of the emotional drain is overwhelming that news at the moment. All I hear is "we still don't know anything" and therefore "there's nothing more for us to do."

I would hate to be a doctor with a patient like me. To have all this knowledge and tools and technology, and at the end of the day have to say "I dunno."  When the cardiologist said that the holter showed no unusual activity, I was shocked, because I know what I felt. I've also had both my parents and my son confirm what I felt - they could feel my heart just by putting a hand on my chest, when normally my pulse is not all that easy for the lay person to find. So I know that what's going on is not in my head. What ocurred to me, is that they probably don't know how to measure whatever it is I'm feeling. Maybe it's not a huge spike in heart rate. But it's something. Something they don't know how to define, of how to find, or how to measure.

I am, quite simply, beyond the reach of modern medicine. And I wish with all my heart that wasn't the case.


  1. It may be embarrassing to be different if one is wrong-but it is an enviable distinction to be different if one is right.
    ~~~Richard L. Evans~~~

    Andu, no me pudo imaginar lo frustrante que es para ti. Quiero que sepas que estoy absolutamente maravillada de lo bien que lo estas manejando y que el ejemplo que me estas dando esta en mi mente diariamente mientras camino los pasos de mi vida.

  2. Pues sigamos caminando juntas, Cuqui! I love having you by my side across the continent.

  3. You may not be beyond the reach of the combined knowledge of all the health professions, but you are definitely beyond the reach of the current medical model alone, which really doesn't look beyond anatomy and pharamcology. A lot of really fundamental physiological stuff isn't in the medical curriculum. I know exactly what you mean with the loud heartbeat - same here - and also have no idea why the medical profession can't pick it up. Only thing I would suggest is that when a modality clearly doesn't understand what's wrong with you, don't assume that all their advice is correct. Doctors may need to be reminded of this as they are used to assuming that they know everything and acting accordingly.

    Collective experience of Graded Exercise Therapy is to be very, very careful. The doc is right to say you would benefit from being fitter, but may be totally wrong in saying that you would benefit from exercising. Post-Exertional Malaise (PEM) is not generally recognised, we're assumed to be the same as the other 99% of the population that get strengthened by exercise.

    If you were being stress tested they should have scheduled a pair of them on subsequent days, as that demonstrates PEM if it is present. Normal people can do stress tests on subsequent days and return the same parameters. We can't. This is being pioneered here: http://web.pacific.edu/College-of-the-Pacific/Departments-and-Programs/Sport-Sciences/Pacific-Fatigue-Laboratory.html

    Oh, and congratulations for failing the POTS test, which most of us will pass. Seems to me the test is flawed because it's done with our bodies at rest rather than maintaining posture under our own power.

  4. Thanks, as always, Mike, for sharing your knowledge with me.