Many people with ME find that their activity levels cycle through peaks and troughs. On a good day, we naturally tend to do more than might be sensible. In my case I often feel quite well at the time, and so I carry on doing the things I really want to do.
However, this is often followed a couple of days later by a "crash", or put another way a worsening of all my symptoms and an inability to function at my current "normal" level. If I've really overdone it, then I'll find that my normal has also become reduced. So really, I must try to avoid all but the most minor of crashes.
Click on image to see bigger version.
Pacing is a useful technique. Pacing means attempting to keep to a regular and low amount of daily exertion. It is not one bit easy to do, especially on the good days, but pacing like this (click on picture above) helps avoid Boom and Bust. This is important, because I've found that every Bust or Crash leaves me less well off than previously.
The sustainable daily amount will vary for each individual, but should be well below the level that might induce a crash. Frequent rests are recommended, and activities that increase the heart rate should be kept to a minimum.
However, I have found that I'm not very good at judging how much I can do. When I was more able I used to measure my time outside walking the dogs, but that failed to take into account the fact that I was also moving around inside the house, nor did it account for how fast I walked. This made it very easy to misjudge how much I was doing in total.
Last year (after an unsuccessful attempt to pace using a heart rate monitor) I started to use a Fitbit. This useful little gadget records how many daily steps I'm taking, and shows the total as it accumulates throughout the day. Currently I average about 600 steps daily, which is pretty darn low!
The data from my Fitbit also uploads to the Fitbit website as soon as it comes into range of the dongle on my laptop. On the website I can also check a few other things such as my “active time” and how well I slept, both of which are useful features.
Active Time is split into three types:
Very active - for me this is always zero!
Fairly active - which I try to keep as low as possible, any walking, at a normal speed, gets caught into this category.
Lightly active - which is a measure of how much I’ve moved around during the day, quite independent of step count.
And Fitbit gives a running step average for the previous 7 days so it is easy to check if activity is creeping up unintentionally.
Fitbit also allows you to be “friends” with others, or to join the dedicated ME (CFS) group, and so to see the step counts of others. (Unfortunately the messaging system and the forums themselves are less than optimum.)
You can also connect data from other sites to your Fitbit dashboard. I used My Fitness Pal for a while to log my eating habits, and this links well to Fitbit, showing daily calories consumed versus a measure of calories expended each day. I found this very useful.
All in all I think the Fitbit is a great tool, indeed I felt a bit naked without it after I put it through the washer in the pocket of my jeans! From there it valiantly sent many “very active” minutes out to my computer before expiring!
Feel free to ask a question or two here, and maybe give it go!
However even if you don't feel a Fitbit would be useful for you, please take one message away with you from this:
If you have ME with classic Post Exertional Malaise, then in my experience you should avoid overexertion on your good days, because that is a sure way to destroy your whatever well-being you have left.
Best wishes. S
Other posts I've written about Exercise or Pacing:
The Exercise Catch 22
Why NOT Exercise?
A Few Notes on Using a HR monitor for Pacing
The Dilemmas of Exercise and ME
(Edits July 2014)
And another FitBit post here: Monitoring ME: Fitbit