Controlling Symptoms Through Pacing
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.
In the article below, Anne describes how she uses multiple pacing strategies to control her symptoms.
For a period of time, my efforts to pace were often disrupted by changing circumstances, interactions with others and my own expectations as reflected in my self-talk, but by using the strategies described below I have learned to pace myself consistently and avoid the push/crash cycle.
Listening To My Body
The first strategy involves listening to my body’s messages instead of just doing what I think I should or what I want to do. I rate how I am feeling in the moment on a number scale. Doing this reduces the chance I will minimize my symptoms and increases the likelihood I will make decisions that support my body’s needs.
Also, I found that when I do mindfulness practicesI pay more attention to how my body feels and, as a result, live more frequently within my limits. I meditate and often conduct a body scan based on Jon Kabat-Zinn’s Mindfulness-Based Stress Reduction course. And I attend a class that blends Body-Mind Centering and Iyengar Yoga.
Acknowledging and accepting how I feel has enabled me to adjust my activity level over time to more accurately reflect my limits.
Keeping Records
My logs are the most accurate method I use to get perspective on my limitations. I have learned that I am more likely to make changes to my behavior when I have a written record that shows me the connections between my activities and my symptoms.
I have kept logs of individual activities such as diet, sleep, work and exercise, as well as logs of my activities as a whole. My records show me the causes of heightened symptoms. For example, recording stressful interactions and events has shown me how stress affects my symptoms.
When I am having trouble heeding my body's messages, seeing my symptom levels in black and white effectively warns me to reduce and/or change my activities.
Thinking "Sustainability"
I really like the idea of asking myself “what level of daily activity can you sustain over a week?”
To help me toward that goal, I keep a record of all my work and higher level activities, aiming to keep the hours the same every week. If I have more hours than normal to do in one category, I drop something in another category so that the total number of hours for the week remains consistent.
I use a calendar as well to spread out special events or activities across the month or months and arrange lower level days on either side of them.
Taking sustainability one step further, I aim to pace my activities during the week so that I have the same amount of energy on the weekend as well.
I have set up reminders for occasionally and annually recurring tasks and events on my calendar so that I can incorporate these into my weekly plan ahead of time. This prevents me from becoming overloaded unexpectedly and helps me maintain a consistent and sustainable level of activity.
Using Personal Rules
I have adopted rules around the length and frequency of trips outside of the house. I schedule work out of the house every other day.
If I go out two days in a row for other things, I have a day at home afterwards. If I am out for a relatively full day, I stay home at night. Also, the rule to turn off devices by 8 pm has helped a lot.
Additionally, I have created a few guidelines that I follow. One is to stop doing things right away when I notice that I am experiencing worsening symptoms.
Second, when I am experiencing a lot of pain, I need to gently move my body, by doing Qi Gong, yoga, or stretching and/or walking, and then follow up with some form of relaxation. When I am having IBS symptoms, I am stricter about following the FODMAP diet for a couple of days.
Using Routine and Reminders
Maintaining consistent sleep and wake times is a routine I have worked to establish to reduce my symptoms and increase my energy. I start my routine of getting to bed by 9 pm so that I have quiet time to relax my body and mind to prepare for sleep.
Planning my meals in advance for the week is another routine that enables me to have more consistent energy during the week. On one or two days in the week, I make the plan, have shopping done and food prepped so that it takes me only about 15 minutes to make or heat each meal.
I have printed my limits on individual activities and my energy envelope and put them in a binder I review often. To remind myself of my weekly goals, I print them out on paper and record my progress there.
Planning My Life and Live My Plan
My plan is to follow my personal rules and honor the limits on individual activities and routines I have set for myself. Choosing jobs with a fairly consistent and/or flexible work schedule during my best times of day help me honor my self-management plan.
To be able to live my life well, I need to maintain a regular rhythm of alternating sleep, activity, rest, moderate exercise, relaxation, and eating.
I have learned that scheduling in advance is central to carrying out my plan. I list all the things I have to do for the month and then break these tasks down into weekly priorities.
I use a notepad that says “If I get nothing else done today, I must…” I identify the top three priorities in categories like calls to make, emails to send, work to do etc. and give myself permission to not do the rest if necessary.
Using "Stop and Choose"
Pausing to think about how I want to feel tomorrow and the next day helps me to make better decisions. I review my future plans and ask myself whether I can afford to do the activity in addition to what I have already scheduled.
I accept that I may not be able to do both or all and I choose the most important. While it may be easy to fall into thinking that I have do something, I remind myself that I always have the choice of what I do or not do.
Learning Assertiveness
Articulating my limits to family, bosses, fellow employees, and friends is essential to pacing myself consistently. I have come a long way with voicing my boundaries and needs related to my illness. I am learning that I can take care of myself and not compromise my health in order to meet others’ needs.
I can balance my personal needs with others’ needs better when I honestly express my boundaries. First, I need to be clear about my needs and personal rules. Then, I need to communicate them to others in a brief, direct way. If someone is repeatedly not respecting my boundary despite discussing it further, then I need either to limit or to avoid contact with them.
Forgive Yourself
Adapting more forgiving self-talk around my efforts at managing my ME/CFS and FM has reduced my symptoms.
Participating in the Self-Help program courses has taught me to view my self-management as an ongoing learning experiment. I am interested in finding out what I can learn from each experience I have so that I can apply that knowledge in the future.
I have also utilized Martin Seligman’s principles in his book Learned Optimism to adjust my thinking. I focus on the positive things I have done each day even if there are other factors that I had a hard time controlling or couldn’t control. When I write down something positive I learned from a challenging event, I notice I am less negative and discouraged and my outlook improves.
Conclusion
Pacing consistently has taught me that I can significantly influence my symptoms by how I live. I may not be able to eradicate them, but I can minimize them through my own efforts.
I have had to learn to do things differently, adopt new habits, and adjust my thinking. By using the strategies I described above, I have gained more balance, ease and control in my life. I spend my time proactively managing my symptoms and less time living in response to them.
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