Tag Archives: ME/CFS

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You Make My Heartbeat Mo Mo More…

I’m a few years behind the times here, but I finally bought a heart rate monitor. I actually ordered one from Amazon ages ago when I was looking for a pedometer, but wound up returning it because I didn’t want to deal with the chest strap and bulky watch. Little did I know that it could be a very useful tool in managing ME. So, after watching this video made by Dr. Nancy Klimas, director of the CFS Clinic in Miami, I decided to buy another one with the goal of increasing my fitness level and muscle tone ~ carefully, over a long period of time. Apparently I still wasn’t convinced it was going to be a good investment because I went for the cheapest option with decent reviews and got this monitor made by Pyle. I don’t want to go to the trouble of returning it again, but, be warned: it is huge. It’s working and I’m managing to use it with consistent results, but the chest strap – as tight as you can make it – slips down a lot and I know there are straps and watches made for women out there. I wish I’d researched a bit more.

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You can see all three of Dr. Klimas’s videos and get more info at the Exercise Group page created by Dan Moricoli of the ME-CFS Community website (you might have to create a username and password to access it). If you are interested in more details, I recommend you read this article by Bruce Campbell and this post by Sue over at Learning to Live with CFS.

The upshot is, people with ME/CFS should stay in aerobic “exercise” because, once your body goes over the anaerobic threshold, it is using energy pulled from the muscles and this can cause post-exertional malaise. If you can’t afford to fly to Florida and get all the fancy testing, you can roughly calculate your anaerobic threshold as 60% of your maximum heart rate with the following formula: (220 – 50) x .6 For me, that is 108 bpm.

What I have learned in the last week of wearing the heart rate monitor is amazing. I set the alarm on the monitor to go off when I hit 105 bpm, which, it turns out, is a lot. Lying down, my heart rate is in the 60s. Sitting up, it is in the 70s. Doing any movement puts it in the 80s and 90s. The over-105 alarm goes off every time I stand up. It doesn’t stay up if I continue standing, but it takes a few minutes to come down. The alarm goes off when I do anything to do with laundry ~ the motion of reaching down, pulling sheets out of a washer or dryer jacks my pulse up and keeps it up. I’ve started to do laundry sitting on the ground, moving my arms carefully (luckily, we got front-loaders last year). The alarm goes off every time I climb the few stairs to the bathroom and, surprisingly, EVERY time I pour a glass of water and drink it. I don’t know if it is the action of pouring from the filter jug or lifting the glass to my mouth or swallowing or all of it. That’s some serious exercise! Whenever I take a bath, my heart rate stays high for a very long time afterwards. I drink a lot of water in case it is caused by low blood volume, but it doesn’t seem to help. The flip-side is, I can walk my laps around the garden without going over 100 bpms ~ as long as I don’t move too quickly and take little breaks. I’m still only doing 3 or 4 laps a few times each week. I CANNOT WAIT until I am able to take a proper walk. I just want to be able to walk for half an hour straight. In the dog park. It would be glorious.

If anyone has any experience with using the heart rate monitor program for ME and can give me advice, I would love it. I’m trying to figure out where the parameters are… I guess I just have to figure it out the old fashioned way: if I crash after activity, I did too much. My “better” days ended on Easter. I’m not feeling terrible, but I’m not feeling good. If those days of slightly-more-strength came back and stayed back, I could see myself working again. Maybe even thinking about life every day and not the incessant head-to-toe analysis of what my body is doing.

Note to E. and my brother T.: name that tune before you look: Title Credit.

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Oh My Good

I have had a remarkably good four days, but my mother thought I was having a not-so-good week because my blog had mentioned how stiff and achy I was. So, to clarify for the readers and for myself when I look back at this post months from now: “good” means the exhaustion, discomfort and pain are bearable – are livable-with. It’s not what I used to be pre-ME, but it’s doable. Billions of people live joyful, fulfilling lives with these issues.

My baseline at the moment is constant fatigue, muscle aches and stiffness, the latter being worst in the morning. I always have pain – mostly in my neck and lower back, the bottom of my spine, and the back of my hips – that whole “hinge” area. I always feel like I have a slight cold. Often this feels like full-blown flu, but, on good days, just a wee head cold without a cough.

Good means I’m not too crippled to move by muscle pain or viral chills or the thickness of inflamed fever. I’m not rendered a squinting, grimacing statue from noise and light intensifying a skull-cracking headache. Good means I can stand up and stoop over, I can talk and interact – not long and not too heartily, but with minimal effort for short periods of time. Good means I feel stronger. This, I’ve discovered, is vital. Not stronger as in muscle strength – it’s shocking how physically weak I’ve become – but stronger in that I could and can handle things better. Just a slight increase in my overall fortitude – as if I could lose sleep and be okay… Or make a meal or have an argument or deal with a (small) emergency and be okay.

It’s a small shift, but it’s freeing because it gives me confidence and hope. It’s the first step towards laughing with gusto, animatedly talking to more than one person at a time, playing with nieces and nephews, hiking, running, dancing, singing… Good means, in this moment, overall I feel happy.

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