I continue to wear my heart rate monitor every day, and generally listen to its alarm. When it starts to sound, I sit down (although not instantaneously I will admit). And when I hit the part of the day where it goes off every time I get up or move around, I know I’m done for the day. If I’m lucky, it’s after dinner. But I’ve found that whenever I am really active, the trigger-happy time of day comes earlier. I don’t know for sure, but it seems to me that once I’ve used up whatever energy stores I have, my heart rate rises more easily and stays elevated. A constant alarm is a pretty hard signal to ignore, and if my family is around it’s impossible. One good thing about the alarm: my husband and family are insistent about my listening it. Double edged sword, that, since it’s impossible to get away with overdoing it.
Today, I started the next phase of incorporating my true anaerobic threshold into my daily life: preemptive rest. In his self-help course, Bruce Campbell says that preemptive rest is one of the most important tools for people with CFS. Preemptive rest, or rest to prevent symptoms, is scheduled rest taken regardless of how you feel. By resting before you feel tired, it is possible to reduce symptoms and improve stamina. In the context of the anaerobic threshold, resting before reaching that threshold gives your body a chance to recover from activity before you have gone into “oxygen debt.” In theory, this might increase the sustainable amount of overall activity by rebuilding energy stores before they are depleted.
I’m skeptical. I don’t doubt that the theory has merit. I’m skeptical about my ability to follow through with it. Lying down when I’m not tired seems like a waste. My capacity is so limited, it seems pointless to take a break before I get tired. Along with scheduling preemptive rest, my physical therapist believes that limits on the length of time I spend at any activity will also help. She says that I should take a break after 20 minutes of any activity, but I pushed back on that one. Take a break after 20 minutes on the computer? I can’t get through my email in 20 minutes. I also worry about losing my train of thought. It takes such concentration to write. If I have to take a break every 20 minutes, I’ll have to gear that concentration back up over and over. I would much rather work on a task to completion. I also resist such a regimented approach to getting through the day. Again, my capacity is already so limited that it’s hard to apply even more restrictions to myself.
So we negotiated a compromise. I will take two scheduled rest breaks a day: 20 minutes in the morning and 40 minutes in the afternoon. I will take rest breaks after 20 minutes of physical activity. This means breaking tasks like making dinner into smaller chunks and extending it over more time. And I will take a break after one hour on the computer. I’m tracking my activity, heart rate and symptoms every 30 minutes this week. It’s a laborious pain in the arse, but I don’t think I will stay on track without that kind of record keeping. Otherwise, I’ll just lose track of what I’m doing and how long I’ve been at it.
I took my scheduled rest today, but I did not experience any difference in my stamina or symptoms. It’s only been one day, so it’s impossible to draw any conclusions. I suspect that the benefits from this will only become evident over time, possibly over several weeks. I just hope I have the patience to see it through.
This is very interesting. I’ve ordered a heart rate moniter about 3 monts ago, but the one I got didn’t seem to work and now that I finally got another one it also doesn’t seem to work. I don’t know if it’s broken or it’s a problem with the contact (somebody told me you need to sweat in order for it to work).
Did you ever get tested for POTS? I recently have been and it turned out I have POTS. Treating this might help keeping the heart rate below the threshold as well (I’m just guessing here though and am not qualified in any way).
Hi Eric, I definitely have some kind of orthostatic intolerance. Using propranalol or other beta blockers for POTS will also lower heart rate. This is great for patients whose resting heart rate might be in the 90s. My resting heart rate is in the low 70s, so I don’t think a beta blocker would work for me.
In terms of the heart rate monitor, try an electrode gel or cream like this one (no endorsement, etc etc). I have found that just a little bit improves the functioning of the monitor and also protects my skin a little bit.
For me the time I almost always spend in pre-emptive rest has taken me from nearly house-bound to back at college part time as a mature student. It has sustained me for 5 years and is the single most important factor I credit for reducing and even eliminating some symptoms.
I take the time off in the “afternoon” and use it as a rest cure, replacement of energy time. The “afternoon” is from 12-6 which gives me plenty of time to be flexible.
If we read and re-read Bruce’s recovery articles we’ll see that quick short flat rests were also part of his recovery. I didn’t grasp these until the last year, and am so sorry I wasn’t paying attention until now. Lying lat for me on the bed, eyes closed is very quickly restorative. 5-10 minutes is usually it . My eyes open when I’m refreshed and I am given the energy to go on and do more. I may take 2-3 flat rests a day. After physical exertion and a short flat rest i can go on and be productive in the even, able to making a simple dinner and using the computer.
I’ve used my heart rate monitor to tell me when I am above my 60% Aerobic Threshold, and either slow down, stop or sit. And watch my pulse recover so I can go on again. I endurance raced my horse and learned to improve fitness by this very basic technique.
I have learned to feel when my body says slow down so don’t have to wear my pule monitor often. I carry a lightweight folding stool with shoulder strap to use when I need to in certain circumstances.
Please don’t give up on the rests and pre-emptive rest. You may notice an increase whatever capacity you now have with the short flat rests more quickly. The pre-emptive rests are a gift you give to your body to support the healing process. If you are aiming for the holy grail of consistency in your energy expenditure these two practices will make much easier to achieve.
Best of luck in following Bruce’s protocol and discovering what works for you at this point. Congratulations on logging. It is a pain, but seems to be the only way of showing up what is actually happening. It is far too easy to slip into “normal” mode and push through, building up adrenaline and lactic acid, and a great energy debt which only PEM repays.
I’m skeptical. I don’t doubt that the theory has merit. I’m skeptical about my ability to follow through with it.
I hear ya. I’ve been using a heart-rate monitor (off and on due to battery issues) since 2009 and have found that a.) it takes awhile to see results and b.) it takes an extraordinary amount of self-discipline to make it work. I did see small results in my heart rate after the first week of use. But I’ve found that in terms of real improvements in functional capacity, it’s even longer — a good month or two (at least). Which is hard to keep in mind when one is in the middle of writing (an example with which I could also well-empathize) or making breakfast. While I’m no expert on evolutionary neuroscience, I strongly suspect that we (who are not, say, Olympic athletes) are not hard-wired to think about our current behaviors with regard to their consequences months down the road. It’s not that I can’t be self-disciplined (I never drank once in college and was in bed most nights by 10pm); it’s just that I’ve become so used to blocking out the sound of the heart-rate monitor alarm when I’m in the middle of something where I can’t (or won’t) drop everything and go lay down yet again (I can’t even sit up and eat most days without it going off and have yet to get up to go to the bathroom without it going off).
That’s not to say I’ve given up. I mean, given our treatment options (i.e. NONE!), it’s the only real option I’ve got. And I readily admit that I can be, er…particularly willful (and have paid with my declining functional capacity as a result). But I just can’t see this being a reasonable option for many patients. And it underscores why we so need a real treatment already.
Good luck! Its hard to be patient with something that doesn’t show imediate results! Preemptive rest sounds like a good idea to me though. I often rest before I’m tired to try to optimise how much energy I’ll have later. I’m pretty sure it increases stamina too as long as you can avoid the little knock backs from overdoing it one day or fighting a new infection. I find it hard when I’m writing though. I keep aiming for a break every 40 mins but find I’ll keep going until until my concentration starts to waver. I keep meaning to set an alarm. The fact that I haven’t yet shows that I don’t want my creativity to be curbed like that. Do we choose long term improvements in our health or here and now fulfilment? Hard one isn’t it!
I have been taking twice daily “power naps” for some time now and it definitely helps! I use the sheet here:
http://blog.makemecrafts.com/2012/08/make-me-events-updated.html
to track my day. I just use two florescent pens to shade in the 1/2 hour slots: green – my powernaps, and purple the times when I’m active. The more active, I am then the more the purple stretches across each line. I also write down any exercise in terms of minutes walked and total them daily and weekly.
This way I have been able to see that I run on roughly a 6 week cycle of building up and then crashing down. At the mo I am due a crash, so I’m consciously walking less (and slower than I want to) and I really should be more careful about always taking my powernaps….
I’ve just started with the HR monitor. I’m guessing that if I tracked it a bit, I would be able to see the stress building and so pull back sooner…
Ooops wrong linky: http://www.ocfp.on.ca/docs/public-policy-documents/activity-log-and-functional-capacity-scale.pdf?Status=Master#d14b9fba-3da2-4216-a446-980b43dbd82e
Thanks for sharing the log sheet, Sally! It looks very helpful.
So just back from the clinic and the consultant looked at my pacing charts and told me I was trying to build up too quickly…. He said I need to stick at only 60% of what I can do with out crashing for a few months before building any further!
That will leave me with less than 20 mins walking a day! Not much when there are so many little things needing done.
I really think a HR monitor might be a more accurate way of judging things… hubby is looking into one that can log and download info….
Really enjoy your blog Jennie – some helpful and thoughtful stuff here. Thank you.
Thank YOU, Sally, that’s very kind.
I’m starting to wonder if I should incorporate a pedometer into the mix too. Maybe tracking steps as well as activity time would give a more complete picture of any improvement over time. Anyone try this?
I used a pedometer for a while – but found it only recorded when I was WALKING rather than the gentle amble I now do. It didn’t record my movements around the classroom as I was teaching, for example, but it did register when I set off from the class room to the staffroom for coffee!! lol.
Apparently you can now get HR monitors with GPS that will record even short distances of movement. I know some athletes use it to record their training runs. They can be linked to maps then to give the ascent and descents linked to HR etc. Fascinating.
Not sure how accurate they would be at recording the walk between the kitchen and the bathroom though!
Dr. Charles Lapp reckons that we should aim for no more than 5000 steps a day if we have CFS.
Using a heart rate monitor set at 95bpm was very useful to me, as I soon learned how my body felt and how quickly I recovered when I went over that level. I’ve been luck that I can listen to my body with physical exertion quite well. It is the social/emotional/cognitive energy expenditure that I find difficult to monitor. I do try to listen to my body but it is much more difficult to hear in those circumstances.
Here is Bruce Campbell’s article on using a heart monitor: http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
Lots of good ideas within the short article.
Sally your consultant sounds very wise. You are very lucky to have them.It takes a long time to see the 1% monthly improvement we can bring about bear fruit. I try to celebrate the fact I’m building foundations with my flat rests and pre-emptive rests. These habits need reinforcing so they become as automatic as possible. I’ve been ignoring my need for flat rests and am now paying the price when I slip into tired but wired mode. That is when it is too easy to push through and do a lot of dratted damage to my carefully built foundations
These foundations are very easy to destroy at first. After some months they become more “solid” and can cope with minor indiscretions more easily. It has taken me ages to gain a range of perceptions about what I do to damage my health and bring on symptoms. I’m still learning, as I’ve done too much pushing through this summer and am now in a long term fatigue flare. I’ll simply have to start rebuilding that foundation and try to be patient with the fact it is going to take me some more months to be symptom free again.
Jennie’s blog is very useful, as are these comments and discussions. Thank you all for sharing.