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Devices and Limits on Individual Activities

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 By Bruce Campbell 

The previous article described how to lessen symptoms and bring stability by using daily planned rests, perhaps the most popular pacing strategy among people in our program. This article focuses on two more popular pacing strategies: using devices and learning to put limits on individual activities.

Your efforts to pace yourself can be aided by using devices of various kinds.
Timers and Pedometers
You can use timers as a way to enforce activity limits. For example, you may have found that to avoid intensifying pain you have to limit chopping vegetables to 10 minutes followed by a 5-minute rest. Or you know that 15 minutes is the longest you can be on the computer without getting fatigued or brain fogged.
Using a kitchen timer or the timing function on a watch, cell phone or computer, you can set a timer to sound at the end of the “safe” period. You can use this technique wherever you have limits: kitchen work, time on the computer, time talking on the phone, housecleaning, folding laundry, standing, etc.
A second tool for staying within activity limits is the pedometer or step counter. The first goal with a pedometer is to use it to determine your current activity level and the effects of that level on your symptoms. If you wear a pedometer for several days, you should get a good idea of how many steps you are now taking per day and can correlate that with your symptom level.
Our friend Dr. Lapp believes that between 1,000 and 5,000 steps a day is a good range for many people with ME/CFS and FM. If someone takes fewer than 500 steps a day, he usually suggests they gradually increase their steps.
If someone is over 5,000 steps a day, he finds they are usually too active and he advises that them to cut back. (His guidelines imply that 10,000 steps a day, an exercise target often suggested for healthy people, will be inappropriate for most people with ME/CFS and FM.)
A number of people in our program have told us that their initial finding was that they were too active. And some people are surprised at how many steps they take, even without an exercise program. One wrote, "What astonished me was that even on days when I didn't go out [of the house], I was still recording 1,500 to 2,000 steps.”
Once you have found your current limits, you can use the pedometer to help you stay within them and escape the cycle of push and crash. As one person told me, “I needed the pedometer to show me I was overdoing it. Without it, I had no idea because I was comparing myself to my healthy life. Discipline and measurement are the key.”
Over time, it may be possible to expand the number of steps without increasing your symptoms, if you follow two rules. The first is to increase gradually, which might mean no more than 5% at a time. (For example, from 1,000 to 1,050 steps per day and then staying at that level for a week or more.)

The second is to increase only as tolerated by the body. This means that you monitor the consequences of any increase and return to your previous level if symptoms are intensified.
For more, see the article Pedometers: A Tool for Pacing.

Heart Rate Monitors
One trigger for post-exertional malaise can be your heart rate. If it goes over a threshold, malaise will result. The threshold is often around 60% of a person's maximum heart rate, which is often calculated as 220 minus your age. So, for a person who is 50 years old, the threshold would be calculated as (220 - 50) x .6 = 102 beats per minute.
Once you know your threshold, you can monitor yourself to discover when you are beyond your threshold. One way to track your heart rate is to count the beats. I found my heart rate the old-fashioned way, by looking at my wrist.

Many people use a heart rate monitor. The alarm feature of a monitor tells you when you're about to go outside your limit and alerts you to the need to take a break.
Some people can exceed their threshold with everyday activity. For example, one person in our program reported that just going up a flight of stairs pushed her heart rate beyond her threshold. Her solution was to stop halfway and rest.
Another person says that lifting her daughter used to push her over the edge. Her solution was to sit down and have the child climb into her lap. The monitor can help educate others about your limits and to elicit their help. As one person said, "Using the monitor helped my family to understand and they helped me to stop when it went off."
Staying within your heart rate threshold can lead to an expansion of the Energy Envelope. One person in our program reported, "I've made a lot of progress in the past year, mostly thanks to heart rate monitoring, which trained me to reduce my activity to a level my body can handle. By forcing myself to stay within my limits, I have slowly achieved an increase in what I am able to do."
Stools, Scooters and Other Devices
You may be able to get more done, reduce symptoms or both by using other gadgets and aids to help you, including:
  • Kitchen stool on rollers
  • Scooters
  • Plastic chair or bench in the shower
  • Grab bars in the bath or shower
  • Grabbers and grippers
  • Wheelchair
  • Cane, walking stick or walker
  • Handicap parking tag
  • Portable stool
If you tire or feel faint while standing, consider sitting down whenever possible, for example to prepare meals and while showering (use a kitchen stool on rollers for the former, a plastic stool or chair for the latter). Another tactic for avoiding lightheadedness is to bend over when brushing and/or drying your hair: bringing your head to your hands rather than vice versa.
Some people with ME/CFS and FM who can't stand for long and/or who are sensitive to sensory input find shopping easier if they use a scooter or motorized cart. Many large stores have such devices, which they make available at no cost to shoppers.

One person said that, prior to using a scooter while shopping, she would be so tired from her weekly grocery shopping that she would lie down for two hours after getting home. When she began shopping using the scooter, she didn't need any rest at all afterwards.

Limits on Individual Activities
Another powerful pacing strategy, something I hinted at in earlier articles in this series, is to set limits on particular activities. This can mean that you stop doing some things entirely or that you reduce the amount of time spent doing something so you stop before your symptoms intensify ("stop before you drop").
An example of the former is given in Eunice Beck's article Making a NOT TO DO List. Constructing a list of things you no longer want to do gives you permission to take things off your "should do" list, eliminating activities without feeling guilty about it. Having a "not to do" list gives you a justification for taking steps to protect your health.

Eunice includes in her list "not volunteering or being manipulated into commitments that I know will be a strain on my energy and pain level."
In terms of activities subject to limits, people often target:
  • Computer use
  • Phone calls
  • TV viewing
  • Housework
  • Standing
  • Driving
  • Shopping
  • Socializing
  • Exercise
  • Outings per week (number and length) 
To put limits on individual activities, follow a two-step approach. First, find your limits by experimenting using the technique described in the article on finding limits. For example, you might try different lengths of time on the computer, taking note of your symptoms during and after. Then you gradually adjust your activities to fit within the limits.
Or, you may set limits on how long you stand, how long or how far you drive, how long you spend on the computer or the phone, how long you spend socializing, how far from home you will travel, and how long you spend doing housework (or even which chores you will do). You may find it helpful to stick to your limits by using a timer and we suggest you consider adjusting to your limits using a series of targets or short-term goals.
Bobbie Brown's article 25 Reasons Why I've Improved gives an example of the power of setting limits on specific activities. The article describes how she increased her functional level from about 15% of normal to about 35% or 40%. Two items in Bobbie's list refer to medications, but most of her strategies involve changes in her daily habits and routines.

She uses pacing techniques, such as taking regular, scheduled rests and living within limits. In fact, almost half her items are techniques for setting limits on herself, including limits on driving, time on the computer, time on the phone, sensory input, socializing, household responsibilities and travel.
“Simple But Not Easy”
One person in our program said that self-management is “simple but not easy.” How true!

The essentials of pacing can be described in a few words: find your limits, adapt to limits, then expand activity carefully. But learning how to pace is a gradual process, typically unfolding over a period of years.
This process requires that we change our thinking and also how we live our lives. You can think of it as replacing one set of habits with a new set. This change requires hard work, patience and courage, but the rewards are experienced all along the way, step by step.