How I Improved from Near Bedbound to 80%, Part 1
By Phoebe Love
Note: Phoebe is a ME/CFS and fibromyalgia patient from Wisconsin and has been a member of our community since 2014. She recently resumed her work in spiritual ministry and retreats.
Seven years ago, I came down with severe ME/CFS/FM that rendered me virtually bedbound. No matter how careful I was, even minor exertion caused me to crash into weeks of severe pain and fatigue, and I despaired of getting relief.
But then, over a period of four years, through learning how to pace myself, rest in new ways, get emotional support, and by changing my diet, I have recovered back to 80% of normal.
Second Time Around
My recent experience with ME/CFS/FM is the second time around for me. I was originally sick in the 1980s, but managed to recover over a period of seven years using a symptom treatment plan, reduced activity, and scheduled rests. For several decades, I led an active life with only occasional setbacks.
Then in 2011, two surgeries followed by shingles put me back in bed and reignited the condition I thought I’d escaped, but with two differences. My symptoms were more severe this time and my old strategies didn’t work.
I received some help from the Mayo Clinic pain program and Dr. Jacob Teitelbaum helped me with fatigue and pain management. I started having better days but if I went out for a few hours, I would find myself in bed for days: a classic push-crash cycle.
I only started to improve in a sustained way when I learned about pacing through the ME/CFS and Fibromyalgia Self-Help Program.
Pacing
Pacing has its foundation in the fact that ME/CFS/FM imposes limits. When we go outside those limits, we experience an increase in symptoms called post-exertional malaise (PEM).
The key fact about PEM is that it is always out of proportion to the overdoing. A small infraction can result in hours or even days of forced bedrest. We can gain some control by living within our limits or Energy Envelope.
Learning about pacing changed my thinking about my illness. Rather than looking at it as something to overcome, I began to view it as the central fact of my new life. Based on this acceptance, I asked “Even if I might never recover, how could I still live a good life?”
That perspective, led me to think about listening to my body as my teacher rather than my betrayer. It meant learning the voice of illness as the new guide for my life.
This was particularly difficult because other voices were just as strong —especially the voice of my long-held expectation that I push through and conquer all.
It took a lot of listening, and a lot of trial and error before I experienced progress, because for quite a while the minute I felt a little better, I thought my body was telling me I could do a little more.
Wrong! It was actually telling me that rest felt really good and I needed more, not less. I learned that progress was slow, with many small incremental steps.
Defining the Many Energy Envelopes
In the program, we call our overall limit the “big Energy Envelope,” and our limits in many different areas of our life, the “Little Envelopes.” Overdoing our overall activity triggers PEM, but so does going outside any of the little envelopes.
The little envelopes include limits on different physical activities, such as time standing, walking, doing housework, and shopping. But we also have limits in other areas, such as how much mental and social activity we can tolerate, our needs for daytime rest and nighttime sleep, our ability to tolerate sensory input, our tolerance for stress, and our heart rate.
I began keeping records by experimenting with different logging forms from this website. I eventually settled on using the Weekly Diary Log and Weekly Diary Log Tally Sheet (Note: Available on the Logs, Forms & Worksheets page.) They reminded me of homework charts I’d kept on the refrigerator for my kids.
Learning from My Logs
In the beginning I used 3 colored pens for coding—red for activities, blue for resting and green for self-care, such as getting dressed every day, prayer time, and a little bed yoga.
When I looked at the log, I was surprised at how much red (activities) I had. Until I started logging, I hadn’t realized how much I was doing, Also, I had very little green (self-care), which made me want to learn how to take better care of myself.
Blue, for resting, was very erratic because I wasn’t sleeping at all (often only 15 minutes at a time) and being in bed all day did not feel restful. As my understanding of rest changed to include flat rests, mindfulness practices, and breath work, I saw more blue emerge on my pages.
This often calmed me. On nights that I didn’t sleep a wink, I would look back at the day before and see I had at least practiced deep resting and that was good enough for the time being.
Using Rest
I used several types of rest. Every day, I took a “flat rest”, lying down with my eyes closed for an hour in the morning and the afternoon. I also did “quiet sits” where I sat up (if I could) and practiced mindful breathing and sitting in silence.
“Light rests” consisted of listening to Scripture from the BCP (Book of Common Prayer) App or a guided meditation from The Meaning of Life Experiment App. “Active rests” included bed yoga, bird watching or logging. I learned to incorporate all of these as I made resting my new profession.
Logging is hard work and becomes tedious. There were days I had to let go of it and just do what I could. One day all I did was scribble the word “pain” with an expletive and stuck the note to my sheet.
It basically summed up the day and it later made me laugh—always a good thing. Also, at times I wrote small notes to myself like “pain after texting” as well as filling out the form.
At the end of each week, I filled out the Weekly Tally sheet. My notes helped fill in gaps on days I was really sick and couldn’t log. They also showed me where to be more specific in logging. For instance, I noticed my spirits lift with creative activities.
But they also took energy so I made a category “Play” and looked at how it helped or hurt. The tally sheets gave me insights into my energy envelopes and real patterns began to emerge between 3 and 6 months of logging. (Learning to pace is not quick!)
My Envelope for Physical Activity
As I looked closer at the different areas of my life using my logs, I began to see what was keeping me from improving. My physical envelope was particularly challenging. For example, I observed that even basic movements like washing the dishes could trigger my symptoms some days but not others
When I was well, I used to love to exercise. So on my better days, I tried making four or five walking laps around my house. I felt OK when I was walking, but the next day I would wake up with increased pain and fatigue. I quickly found that my view of physical exertion had to change.
So I did what the program teaches: I experimented, breaking down activity into smaller and smaller parts, to see the effects of even small movements. Over time, I learned that to avoid triggering PEM, I had to do even less than I thought.
Trial and error eventually showed me that doing less over the long haul meant I would gain more going forward. My body could not handle adding extra activity until I had at least 3 weeks under my belt of no symptoms at a given activity level. Listening to my body and waiting past the point of feeling better eventually produced results.
My Envelope for Mental and Social Activity
I was surprised to find my logs showing me that time on the computer, watching TV, or reading made me worse. These seemed like quiet enough activities but the mental energy they required increased my symptoms.
I began budgeting time for each. I allowed myself 30 minutes on the computer a day. I did not watch television. And I listened to Audible rather than read.
Thinking about time with people, I realized I needed to limit how much time I spent socializing. One-on-one conversations were better than group gatherings, but I noticed that if I was equally active as other people, I paid for it the next couple of days. However, if I just listened and kept my comments short I did much better.
I also noticed that, because of pain and fatigue, I often held my breath and tightened my muscles during the time I spent with others (and at other times as well). This had been a subconscious reaction, but it increased my symptoms.
Using quiet relaxation and breathing exercises while I was visiting with others allowed me to expand my time with people without intensifying my fatigue and pain.
Through logging and being attentive to my physical, mental, and social envelopes, I was able to experience some improvement. In part 2 of my story, I’ll describe the dramatic effects brought by dietary changes, my work to manage stress and emotions, and the importance of support to my recovery.
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