The Strategies I Use to Manage ME/CFS & FM

By Anne Leppert

Note: Anne has ME/CFS and FM, as well as several related conditions. She has been a member of our community since 2006 and has given talks on pacing and our program at the Bateman Horne Center in Salt Lake City and its predecessor, OFFER.

Learning how to pace through the Self-Help Program enabled me to gradually gain control over my symptoms. Pacing is a primary tool I use to bring more stability to my life. Here are the strategies I use to help me pace myself and avoid the push/crash cycle.

Delegating

Delegating is a skill I use frequently. I participate in a program called Employment-Related Personal Assistant Services funded by the Department of Health and Medicaid. It enables me to hire help at home when I work 40 hours a month. I manage people to help me with cleaning, laundry, shopping, cooking and errands.

This requires me to be organized, to prioritize, to set boundaries and to communicate clearly. While this is work for me, it takes much less energy than doing the tasks myself.

It was challenging at first to admit I needed help, but I have accepted this fact of living with ME/CFS and FM and it’s paid off. Delegating has improved the management of my symptoms and my quality of life.

Planned Rests

Planned rest periods are something I have gradually incorporated into my routine. Before I go out for the day, I rest 5 to 20 minutes. If there is a convenient place to lie down while I am out, such as a park or even in my car, I will sometimes do that for 15 minutes.

I rest for 20 to 60 minutes as soon as I get home in the afternoon, with the length depending on my activity level that day. Often I listen to relaxation CD’s, but I also rest silently.

When I am at home all day I rest at least twice, at mid-day and mid-afternoon 20 to 45 minutes. To prepare for a longer day I will schedule one low level day beforehand so that I rest enough in advance. If I notice I am spending extra time in bed in the morning or before my normal bedtime, I know I need to do more planned rests during the day.

Limits on Individual Activities

Finding my limits for individual activities has been an immensely helpful strategy for learning to pace better. The best length of time for me to be outside the house is 6 hours, although it does vary. I have discovered through trial and error that my limit on working at a job is 12 hours per week in addition to my other activities. Working a 4 hour shift is ideal.

After sitting I need to get up every 90 minutes to move around. When required to stand in one place, I limit it to 20 to 39 minutes at a time. I limit cardio exercise such as walking and using the stationary bike to 20 minutes or less on certain days.

Setting limits helps me remember my tolerance to individual activities based on past experience. I can rely upon these limits to prevent me from overdoing.

Mental Adjustments

How I perceive my physical and mental abilities and what I expect of myself directly affects how I pace. Letting go of my old expectations of what I could do is an ongoing process. I remind myself I am valued for who I am, not what I do.

It is important that I validate myself and my positive efforts to manage my health. By doing so, it has become easier for me to let go of needing approval from others.

For example, I have shifted my thinking about rest. I used to see it as a heavy burden; now I view it as an activity that enables me to do more things in the future, much like a savings deposit does. It helped me accept the value of rest when I calculated that resting 1.5 hours is only 9% of my day and 2.25 hours is only 15% of my day.

Thinking in those terms showed me that the percentage of time I rest is not nearly as high as I had thought. This helped me realize I still have a lot of time to live my life as long as I honor my body’s need to refuel on a regular basis. Adjusting my thoughts to be more in alignment with the reality of my health limitations is a key to being able to pace well.

Limiting Sensory Input

Logging helped me discover that my sensory input envelope was much smaller than I realized. I have needed to put limits on digital stimulation because it interferes with my ability to rest. I do not use more than one device at a time.

I try to limit phone calls to 30 minutes, or 1 hour maximum. I have turned on the Do Not Disturb option on my phone between the hours of 8 pm and 9 am. I either avoid or limit TV to 1 hour on certain days. Other times, I will turn the TV off by 9 pm at the latest if I want to get a good night’s sleep. In general, I avoid loud, busy places and large groups of people.

Keeping Pleasure in Life

Doing pleasurable activities is one of the most effective strategies to aid my pacing. It can provide distraction from symptoms, produce endorphins and trigger the relaxation response. At the same time, it lessons pain, stress and anxiety.

While at home I practice Iyengar and restorative yoga, progressive muscle relaxation and visualization exercises daily, all of which are great for relaxing and grounding. Spending time outdoors while doing light exercise, gardening, seeing new places and appreciating nature rejuvenate me. I enjoy going to an early movie and dinner, watching comedy, reading books and doing artwork.

Conclusion

While I resisted pacing at first for fear of not getting as much out of life, I discovered that it actually allows me to do more over the long-term by reducing relapses. More importantly, it led to significant reductions in my symptoms. Using these pacing strategies has given me a sense of control over my life and enabled me to improve my quality of life greatly.

Related Article

Controlling Symptoms Through Pacing
Another article on pacing by Anne Leppert.