Can’t Drive 95

Almost as soon as I had decided to raise the limit on my heart rate monitor to 105 beats per minute, my physical therapy team smacked that idea down. They told me that one week with the monitor was not enough to really get the hang of pacing, and suggested that I was raising the limit so the monitor would not go off as frequently rather than because of any real improvement in my energy management. On their advice, I set the alarm back down to 95 beats per minute.

They were right.

One week was not enough. Neither is one month. My activity sets off the alarm multiple times a day. Climbing stairs, carrying objects, making the bed, moving anywhere too quickly – it all sets off the alarm. I tracked my activity, position and heart rate carefully for several weeks. And I tried – I really really tried – to make different choices and limit my activity.

It worked, sort of. After recovering from a family event, I went three weeks without a crash. My pain levels have decreased. I haven’t ended each day crawling into bed at 6:30 pm, shaking and exhausted. But this came with a price. I did not leave the house for those three weeks. I was much less productive than normal – just more inactive overall.

And I was miserable. I worried about the long-term effect of being even less active than before. I was bored, so terribly bored. I realized that pushing hard to exhaustion actually prevents me from feeling bored. If I’m completely wiped out, my brain can’t care about the fact that I’m spacing out to a baseball game. It doesn’t bother me when I’m too tired to care. But now I’m aware/awake enough to notice that I’m doing nothing, thinking nothing, and that I’m bored.

I feel the bars of this prison more acutely. It’s like standing outside a bakery and looking at the goodies in the window. I can see the things I want to do, but I can’t touch them without setting off the monitor. So I stand at the glass and stare. I want to fuss in the garden, tidy up, bake bread, cook dinner, write more blog posts, read read read the stack of articles in my queue, take photos, visit with friends – and I can’t. Not without hearing the boo-doop chime of the alarm. These are all things I did before, and I accepted the consequential pain and exhaustion. Now I am not doing them, and struggling to accept the consequential boredom, loneliness, and despair.

It’s a trade off, either way. But which is the right choice? When is it better to be bored? When is it better to be in pain? Living with CFS is always about moving targets, shifting limits, and hard choices. Wearing the heart rate monitor is designed to help me stop before I get to pain and post-exertional relapse. When I obey the alarm, it works; I experience much less pain and relapse.

But is it worth it?

What kind of life is it to stop halfway up 13 steps to rest? To not be able to cook and then also do the dishes? To not kick the ball around the yard with the dog for a few minutes? To say no, no, and no again to invitations and fun plans? To shrink my world so that I’m not free to move within my own home without a chime sounding? To sit and sit and sit and sit and sit and all the time knowing that I am sitting while opportunities slip by?

There are people with CFS who are bedridden. I am fortunate to have only suffered that way for short periods of time. But when I have been that ill, I have been so hazy and weak that I didn’t really notice. It’s like the first few days after acute gastroenteritis, where you’re not throwing up (which is good) but you can’t do anything else (and you don’t care).

Living with this heart rate limit is not like that. This feels like a cruel experiment. There’s a plate of cookies on the table in front of me, and I want a cookie. But every time I reach for the cookie, I get a powerful electric shock. So I sit, looking at the cookies, acutely aware that I can’t have one. I’ve made these adjustments before. When I gave up my job. When I gave up driving. When I gave up cooking dinner for friends. When I gave up walking more than 50 yards and submitted to using a wheelchair. I’ve been there, done that. And each time, it did not feel optional. I gave those things up because to continue doing them meant unbearable pain and exhaustion. But these day to day life things that set off the heart monitor are not like that. No single thing – carrying a few books up stairs, kicking the ball for the dog – puts me down. But cumulatively, or done for too long, these things do knock me out, and the heart monitor can prevent that.

What I’ve learned since strapping on the heart rate monitor is that the glass box of my limitations is too small. If I obey the monitor, if I focus on setting it off as little as possible, I will lose my mind. I will sink into deep depression, isolated and unsatisfied. I will resent the healthies in my life. I will surrender more of myself to this greedy illness, and I will live each day focused on what I cannot do rather than on what I can. The longer I wear this monitor, the more clear it becomes to me that I cannot abide the speed limit of 95 beats per minute.

Edited to add: My friend Wilhelmina Jenkins posted a comment on Facebook that I’ve posted with her permission below, but one sentence really captures how I feel: “How long can you stare at the cookies in the window without feeling that you are starving to death?”

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26 Responses to Can’t Drive 95

  1. prefer not to say says:

    Thanks for just taking the time — and energy — to post your thoughts about the trade-offs that come with trying to live crash-free. I live in constant terror that my husband, a cfs sufferer will one day crash so badly that he will never recover even to his current level of ill health. At just this moment, I really needed the reminder that strict limits on activity also exact a high price.

  2. It sounds like you’re having a really hard time and I feel for you. However I want to offer some encouragement to accept your shrinking world for the time being, to try and find different ways of finding pleasure that live withing your 95 beats a minute world. I know its not easy, and allowing your feelings of loss expression and flow is a really important part of the process, but it doesn’t necesarily mean long term disatisfaction. Allow it to be a here and now feeling but try not to get caught up in the belief that it will continue to feel this bad. I believe that my limited life will lead to better health; to the prospect of being able to do more of the things I want to do without the negative consequences, I believe that I am making a sacrifice now for better health in the future. But in the mean time I am also seting myself the challenge of learning to enjoy more gentle passtimes. To find happiness in being and not just in doing. Its a big challenge, but also something to get my teeth into.
    Good luck with which ever course of action you choose. I hope this period of dispair is a fleeting one and you soon find happiness and improving health. x

  3. Jennie Spotila says:

    My friend Wilhelmina Jenkins posted this comment on Facebook, and gave me permission to repost here:

    Great post, and so accurate about the cost of restricting activity. How much can we give up and still feel that we have any life at all? With me, my grandsons are without a doubt the most exhausting and the best things in my life. I know that I overextend with them, but the concept of giving up that precious time is more than I can bear. I only give up time with them when I absolutely can’t move. How long can you stare at the cookies in the window without feeling that you are starving to death?

  4. Turtleknits says:

    Best. Blog. Post. Ever.


  5. Anne Ö says:

    Thanks for another great post, Jennie! Your words describe my life too (without a heart rate monitor but with pacing limits). I am possibly even more restricted than you are at this point, I am housebound, need to lie down for most of the day, and can only manage radio, computer or books for about 1-2 hours a day. My entire social life consists of seeing people two hours at a time maybe twice a week (and even that is above the pacing limit).

    As you understand, there is A LOT of lying down with only my thoughts and my pain. Waaaay on the wrong side of the crazy treshold.

    The “I’m so exhausted I don’t really feel how bad I’m feeling” thing only happens to me when I have actual fever. It’s a kind of bliss, I think. But for the rest of the time it’s just like what you are describing: I’m completely awake/aware. Lying in bed is not something comfortable anymore. It’s lying completely conscious in a prison cell, being hit by constant painful symptoms. (And then I know many patients who are even worse off. I don’t know how they cope. They are all heroes to me.)

    Another reflection: There is often talk about “secondary depression” with ME/CFS. I have wondered a lot about this. How does one define depression in an extreme situation like this? Imagine that you are, say, a political prisoner somewhere. Your circumstances are horrible, you are imprisoned and tortured. You are cut of from your family and friends and everything that was your life. All you can do is lie on your prison bed and try not to think of life passing you by. You have a lifelong sentence, there is little chance that this situation will ever change. If in all this you feel despair – is that a depression? Or is it just a very normal reaction to an abnormal and awful situation?

    About your thoughts on what to do next: I share the worries that you have about so little activity. But myself I also worry about what crashing does to my body. Do you think there is any chance that if you keep under your limit for a number of months, your body will actually improve? What do the exercise testing research team say about that?

    Thank you for your blog, it’s great: so full of information and insights.

    • Jennie Spotila says:

      Anne, you make an interesting point about “secondary” depression. Does our response to our limitations even qualify as depression? Maybe some of the time it doesn’t. Maybe part of what we are experiencing is a normal reaction to extreme circumstances, as you say. I will try to find an expert opinion on that, since I am certainly not the right person to draw the distinction.

      Regarding hope for improvement, yes! This process is not just about avoiding pain, or exchanging one kind of pain for another. The hope is two-fold. First, that I will gain greater control over how I expend the energy I have, and that the supply will be more predictable/reliable. Second, that through pacing and then very carefully managed and gentle exercise that I might actually improve my anaerobic threshold. If I can do that, then my heart rate limit would go up and I would be able to tolerate more activity. This has been demonstrated (although no large scale trials have been done, to my knowledge).

  6. Tara says:

    Great post. Even without the heart monitors, so many of us can relate to the struggle. But I totally get how the new limits the monitor places on you, just makes it all the more difficult and frustrating.

    My question was what you’ve started to answer above, but I’m wondering if they can give you more specific info? Do they feel that if you hang in there with being that careful and restrictive, after some time, are you then able to do more than what your original baseline level of activity or push/crash cycle led you to do? If they’re saying your anaerobic threshold improves, has their experience been, it’ll improve to the point where you can do the activities you originally did, w/o setting off the monitor.. or just have the monitor set higher than 95, for ex, but even with the increase, patients still don’t do as much as they once were?
    And real curious if they found not only can patients do their previous baseline level w/o crashing or going above the threshold, but do they find patients eventually do more than original their baseline, w/o crashing or going above the threshold?

    • Jennie Spotila says:

      The heart rate method of pacing definitely does not allow patients to go back to doing what they did before the illness. But raising the anaerobic threshold can make a difference. If I can raise my anaerobic threshold to correspond to a heart rate of 100 or 105, then I will be able to do activities at that heart rate without pushing my body towards a crash.

      So for example, walking from the back of my yard into the house puts my heart rate up to 100 or so (on a good day). Right now, that sets off the alarm and I have to rest. If I don’t rest, then I’m taxing my body – both in the moment and in needing more time to recover later. I’ve found that spending time over my AT causes my heart rate to elevate more quickly and to higher rates as the day goes on, until I hit the wall and can’t do anything at all. But if I can raise my AT to correspond with a heart rate of 100, then all the activities that currently put me between 95 and 100 will be more easily tolerated.

      The heart rate alarm tells me, “Look out, you are drawing on reserves. If you don’t stop soon, you’ll be paying for it later.” CFS patients have lower ATs but also have impaired recovery. That’s why it takes us so long to recover from overdoing it. The more time I spend over the AT, the longer I will need to recover. But if I raise my AT, then I can do those activities free and clear (until my heart rate exceeds the new AT). In my example, if my AT occurs at a heart rate of 100 then I could walk from the back of the yard into the house without needing to rest afterwards.

      I hope that answers your question, but please let me know if it’s not clear!

  7. Tara says:

    Thanks for your response. So if I’m understanding this correctly, I guess it depends on how taxing one’s current activities are/what your AT starts out at. If say most of your baseline activities put you at 100-105, and you can raise your AT to that, then you could conceivably be able to do what you initially were doing, but without the crash? Have they told you if patients seem to succeed in raising their AT as high as they need it to be to increase their functioning to a level that’s better than where they started or is the hope that they just get back to their baseline activity level w/o crashing?

    And it’s the pacing combined with the graded exercise that’s supposed to increase the AT, right? Can your AT only be determined by going to their lab or can they instruct other doctors/PTs on how to find out their patient’s AT?

    • Jennie Spotila says:

      I’m not sure what you mean by baseline. Do you mean pre-illness baseline? Pre-illness baseline is out of reach for me, but maybe not for other people who are not as severely ill.

      If I can raise my AT to 105, then all the activities that get my heart rate as far as that will not cause a crash. An example would be cooking. Right now if I stand too long while cooking, my heart rate goes up to 105. If that’s in the safe zone, then I can keep doing it without crashing. Pacing plus interval training (which is different from graded exercise) is what’s needed to raise the AT.

      The only way to identify your precise AT is through exercise testing. I only know of two places doing two-day exercise testing on CFS patients. Anyone experienced in cardiopulmonary exercise testing should be able to do it, but I would be careful about that. Most places won’t normally do two-day testing, and may not be aware of issues like the high prevalence of orthostatic intolerance in CFS.

      It’s pretty easy to estimate your AT, though. Subtract your age from 220 (for me it’s 220-43=177). That is your estimated maximum heart rate. Now take 50% of that number (for me 177×50%=88.5). That’s your estimated AT. In my case, my AT is actually 53.6% of my estimated maximum heart rate. You can use a heart rate monitor set to alarm at your estimated AT, and track correlation with symptoms. With some experimentation, you can probably find the “safe” AT number.

  8. Tara says:

    Thanks Jennie, your response was helpful, good to know about the estimated AT. Oh, ha and sorry if I was unclear, when I said “baseline”.. I meant your functional level at the time before you started the program/using the HR monitor, not before you got sick.. so basically all the stuff you were doing before the monitor restricted your activity, if the idea is after the program, you go back to do the pre-monitor stuff, but without feeling as sick from it.
    And yeah , I guess pre-illness baseline would be out of reach for me too. Though I’m still trying to hang on to the hope that programs like this and other research going on out there will one day lead to bigger improvements in my lifetime;-)

    • Jennie Spotila says:

      Ah, I got it now! Yes, if I can raise my AT then I should be able to do cooking or climbing stairs or whatever without crashing. Or perhaps it would be more accurate to say that I could do more of those things without crashing. Before my testing and using the monitor, I would cook or weed or whatever for a longer period of time than I can now with the alarm, and the cumulative effect of those things would cause a crash. I’m avoiding crashing now by significantly reducing my activity. The hope is to build up tolerance and expand those limits.

  9. valerie says:

    Hi Jennie,
    That is a good update. It will be interesting to see how you balance this out. I too went through that with the HR monitor when my daughter was about 12 or younger. It became impossible to wear because I couldn’t really mother with it on. Life just doesn’t work out that way – or didn’t anyway.
    I think it is a good reminder though and maybe I should try it again. Even standing up would set it off at that time….crazy I know. Life around us doesn’t really care about the monitor much, does it?
    PS – it is hard not to want to share a blog like this in my book for the public so they can learn what this darn illness is like. If you would like to write a piece for the project on that, without using the blog, that would be very cool too. Maybe that is a quiet thing to do while bored….hint, hint. This is a great subject to illustrate the level of discipline and constraint needed to just feel better, never mind heal (although that would be great). Always having to give up something to try and cope successfully. However, I think people forget that pacing is not a one-man show. For those living alone, parenting or in families, pacing means if one slows down, the others have to speed up or change too. That does not always go well I find, and then more losses can come. So it is not only the individual usually who has to change, and I wish families and loved ones could all be taught pacing as a group, not an individual task.
    Thanks again.
    Keep in touch.

  10. valerie says:

    I would like to clarify the previous post a little. For those living alone, because there is noone there to speed up if they slow down even more (Pacing), it means hiring help or moving in with others to survive, and again causes more complication.
    Crazy, crazy ME/CFS world.

    • Jennie Spotila says:

      Yes! It’s hard to live with people moving faster than us, but impossible to live alone. I think we really have to try to find what works for us. That’s the best benchmark.

  11. valerie says:

    I am sorry, I forgot to ask: Are you doing the managed and gentle exercise as well? Who do you do that with and what does it look like?

    • Jennie Spotila says:

      I haven’t started the stretching and interval training. We’re focusing on getting the pacing under control right now.

  12. Suella Postles says:

    I used a pulse monitor for about a fortnight 24 hours a day. It was very useful to see, and to learn to feel, what it was like to go above my recommended heart rate. I used Dr. Lapp’s formula of 60% as I wasn’t able to get VO2 Max testing here in the UK.

    What I found really useful was to see how quickly my pulse rate returned to under the 60% level of the formula, if I immediately stopped, or sat or slowed down. I then was able to resume the task. I see it as a form of pacing.

    You will no doubt know the Bruce Campbell article on pacing by numbers. Perhaps it might be helpful to others?

    I have a sense now of elevated pulse rate which I used to see as breathlessness. I now understand it is that my body isn’t getting the oxygen it needs into my tissues. The feeling of elevated pulse rate is very useful for me to be able to alter my activity and then carry on again to proceed safely.

    Have you seen the recommendation of taking one’s resting pulse rate 10 minutes or so after we get up in the morning? I understand that Connie Sol, working with Dr. Nancy Klimas recommends this. Apparently, after working out an morning average resting pulse rate, we have the ability to predict how much we should be doing for the day. If our morning resting pulse rate is much above the average, then we should be warned that we have a problem and should be very very careful with our day’s activities.

    I must say that I am very grateful for all that the information recently being shared on activity and pulse rate. The work shared by Dan Moricoli on his underfunded site includes the information shared in the paragraph immediately above. The short videos on this site are eye opening and have been extremely helpful for me.

    I see my pulse monitor as one of the most useful tools to get an idea of how to manage the various forms of activity that I participate in.

    • Jennie Spotila says:

      I know another patient who uses her morning heart rate to get a sense of what kind of day she’s going to have. Personally, I have noticed how quickly my heart rate drops to “normal” if I sit and rest. Breaking up activity with these rest periods definitely helps me finish a task without crashing (some tasks, anyway).

  13. Carollynn says:

    My brain is sub-par today, so bear with me as I try to ask your thoughts and experience. Just before writing, my heart rate was a wonderful 62, yet I feel quite unwell. I’ve moved from bed to couch to computer couth today, not enough energy for anything else. If I were using heart rate alone as a “should be able to” marker (or if some outside monitoring person/organization were, such as one who would want to invalidate the illness or deny benefits) it would not tell the complete story. I’m wondering if there’s some danger in “putting all our eggs in the heart rate basket.” I know we’re all hoping for a single sure-fire method to be able to give our unwellness an accurate numeric rating that corresponds with what we are feeling in the moment/day/week/month/year, but I think it will need to be some kind of allogorhythm, a combined number–this one combined with who knows what all else. This comes back to perceived un/wellness being the even greater gauge of what we can do, but then why go through all the data tracking? I don’t mean to let the air out of anyone’s tires with this question or mood.

    • Jennie Spotila says:

      You make a great point: heart rate does not tell us everything. We use physical energy, but emotional and mental energy too. A low heart rate will not equal feeling good; this just happened to me the other day. Heart rate is a proxy measurement for when we are doing too much physically. But last week I stayed well under my AT all week and still had a crash day Saturday because I used lots of mental energy.

      The Pacific Fatigue Lab recommends using “rating of perceived exertion” in addition to heart rate. There is an actual scale, but it boils down to how hard it is to do whatever you are doing. If moving from couch to bed is hard, then believe your body and not just the heart rate monitor. As a rule of thumb, when activity starts to feel somewhat hard, stop.

      I have found that my heart rate monitor goes off when I’m physically active but feeling no symptoms, so it’s an early warning system. For mental and emotional energy, I have to wait until I start to feel the effort to recognize that it is time to stop.

  14. Carollynn says:

    Correction: algorithm. My engineer husband would be appaled!

  15. Carollynn says:

    Another correction–me, a former English major, should be “appalled.” Though my OED just now acknowledged “appaled” as a variant–aptly fitting us PWC’s for it means we’ve grown “pale, become enfeebled.” So you see I have enough energy today to make fun of myself and to reach for a heavy dictionary.

    Thank you for your reminder. I am, admittedly, hyper vigilant about aspects of the illness that can be taken to look like malingering, as if someone would say “your heart rate is fine, you must not be sick after all.” So elevated heart rate CAN tell us if we’re over-doing it, but an unelevated heart rate does not mean we’re not. I wonder if language to that effect can be utilized in important literature; during the CFIDS Assoc. webinar it was discussed as a potential biomarker.

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