I'm a disabled artist with CFS/ME, a complex nuero-immune metabolic illness that causes me to be limited to my house and often my bed. Explore my life making art with CFS/ME through my blog and videos!
Nov 14, 2017 | Posted by Zeraph
Several months ago, I clued in to a therapy that I believed would help me. It was a combination of pacing (staying within the “energy envelope,” or available energy for that day) and aggressive rest therapy (ART), a strategy of planned resting.
Often people with CFS/ME are encouraged to exert themselves as much as they can by doctors, family, or simply by their own responsibilities. Over time, patients physically decline as they repeatedly overstep their boundaries in order to keep up with the demands of life, or to do what doctors ask. Others remain relatively stable, but at a level of illness that prevents them from doing most of the things they enjoy.
Pacing and ART are attempts to stabilize and reverse CFS/ME by allowing the body time to recover from reasonable exertion while avoiding excessive exertion. I believe that pacing and ART give the body space to use its natural healing abilities to heal the damage to the body that is caused by CFS/ME.
For me, aggressive rest began with a short period (about two days) of total rest – no lights, no sounds, no watching TV or using any devices. I simply lay down, slept, or relaxed.
After two days, I began a more “active” rest period where I alternated rest periods with easy activities. For me, these easy activities took place in bed, because I was already bedbound. I used my heart rate monitor to keep within my limits. (I’ve chronicled many of my experiences during this period on this blog.)
As I gained strength, I used several “rules of thumb” to guide my activities:
As the body heals, gentle motion can be introduced to strengthen muscles and increase the number of mitochondria. Such “exercise” should be gentle enough to not cause PEM (post-exertional malaise).
While performing these gentle exercises, care should be taken not to exceed the body’s abilities. A heart rate monitor with alarms can help to avoid exceeding the anaerobic threshold, commonly set at 60% of the max heart rate, which is 220 minus the person’s age.
For people with moderate to severe CFS/ME, it is best to set the threshold lower, such as at 50% – 55% of max heart rate, to start. My alarm is set at 50% or 55%, depending on my activity level and how I am doing.
To succeed at these techniques, it’s necessary to control as much about your life as possible. If unexpected challenges come up constantly, it will be hard to pace effectively. Sometimes things cannot be avoided.
Lastly, it’s important to have support in doing pacing and ART; it is hard to do. Staying still is work, and doing nothing is work, too.
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