Recovery from Chronic Fatigue Syndrome
by Bruce Campbell

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Table of Contents

      Introduction
  1: What Do
      I Do?
  2: Multiple
      Strategies
  3: My Unique
      Situation
  4: Is Recovery
      Realistic?

  5: Loss

  6: Self-Help
      Program
  7: Energy
      Envelope
  8: Pacing
  9: Rest
10: Records
11: Exercise
12: Relapses
13: Stress
14: Emotions
15: Support
16: Recovery
17: Lessons
18: What About You?
 

Bruce Campbell's CFIDS/FM Self-Help Program


10: Keeping Records

Initially I didn't know my limits or understand what would help, so I decided to do experiments. I wanted to study my situation as a scientist would, trying things and keeping records of the results. I hoped that some of my experiments would work, but I assumed that others wouldn't. I tried to maintain a willingness to learn from my experience, especially when it contradicted my previous ideas, which was frequent in the beginning. Probably the biggest surprise was to realize that old habits, such as pushing through when my body was hurting, could be harmful.

I knew that I wasn't running a true experiment. With only one subject, I couldn't have a randomized controlled trial, but I felt confident that I could learn a lot by systematic self-observation. I believed that the normal events of life would give me lots of "experimental data" and that I could generate more by deliberately varying my patterns and activities.

Keeping records was crucial to this process. I was confident that having systematic notes about my life would enable me to see patterns and to identify links between my actions and my symptoms. I experimented with a variety of simple logs, most requiring only a few minutes a day to complete. In fact, I made sure the logs were easy to fill out, because I knew that if they weren't, I wouldn't use them consistently. I wanted to make it likely that the time spent logging would be rewarded by insights. I also thought that if I made them too complicated, I wouldn't be able to make sense of all the data I collected. I wrote in my logs daily, then usually spent some time every few weeks analyzing the logs to look for patterns. Sometimes I went over my logs with a friend.

Looking back, I see that the few minutes a day I spent keeping health records were one of the most important parts of my approach and crucial to learning how to pace myself. Certainly the payoff was great for the small investment of time. My records helped in three ways: they documented links between my actions and symptoms; they affected my actions by holding me accountable; and they motivated me to continue with my approach by showing me that it was working.

Linking Cause and Effect

I experimented with a variety of simple logs, usually just one at a time. The log I used the most was similar to the Activity Log, posted on our self-help program's site. I sought to understand the fluctuations in my illness by linking events in my life, which I thought of as "causes," with my symptoms, which I thought of as "effects." The list of items that might be causes changed over time, but included things like the amount of sleep and rest I got, my overall activity level, exercise and stressors (both people and situations). For "effect" I rated each day from '+2' (very good) to '-2' (very bad). Sometimes I made two or three sets of ratings each day to see whether there were patterns within a day. Then I sought to understand why were some days better than others.

Studying my records helped me to recognize fluctuations in symptoms by showing me that my CFS was worse in the morning and better in the evening, and that the effects of exertion were cumulative during a week. Also, logging showed me the connection between standing and symptoms, documented how much exercise was safe, and showed me my vulnerability to stress.

I also used my records to help me understand patterns over longer periods, such as a year. Reviewing my records for 1998, for example, led to my eliminating relapses. I began by identifying eight relapses. (I defined a relapse as a period in which my symptoms were so severe that I had to spend at least one full day in bed.) Second, I looked for common causes and discovered that almost all the relapses were associated with either having another illness or travel.

Last, I developed strategies to minimize the impact of each of these factors in the future. To combat relapses triggered by secondary illnesses, I decided to take two days of extra rest after the symptoms of the secondary illness ended before returning to my normal activity level. To minimize travel-related setbacks, I limited travel to a few hours' driving distance from home, doubled my regular daily rest periods for a few days before a trip, took two or three times as much rest as usual while away, planned for extra rest after returning home, and took a ten- to 15-minute rest for each two hours of driving. I think the two hours I spent on that analysis was the most productive time in my experience with CFS. I haven't had a relapse, defined as being forced to spend at last one day in bed, since. [Still true as of 2017.].

Logging Shapes Behavior

I found that my logs, in addition to being a record of my behavior, also came to shape it. Sometimes, when I was tempted to think that increased symptoms were just part of the illness, my records showed that I had been more active then usual in recent days. Seeing the evidence in black and white helped me to stick to my pacing routine. I could see how much better I felt when I was consistently within my energy envelope and how my symptoms increased when I went outside my limits. So my logging was also a way to hold myself accountable.

A member of one of our early groups took this principle even further. She kept an elaborate calendar with a color rating for each day. She used green to note a minimal level of symptoms ("Go"). Yellow designated an increased level of symptoms and meant "warning, time to cut back a little." Red meant "stop, time to cancel commitments and rest."

Records as Motivators

Logging was also a good motivating tool. My records documented that some days were better than others. Seeing this motivated me to search for what I was doing that created good days so that I could increase their frequency. I also used my records to chart my progress over time. At the end of each month, I rated myself using the Rating Scale I mentioned earlier. Seeing written evidence of improvement gave me hope. It also motivated me to stick to my pacing routines. Each month, I totaled up the number of good days I had. Wanting to expand the number motivated me to be more consistent in staying within my energy envelope.

For all these reasons, I found that the benefits from a few minutes of record keeping a day were great.

(For more about record keeping, including sample logs, see the article Learn to Predict the Unpredictable and the chapter on Records and Worksheets in The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia.)