10. Becoming a CFS Scientist

Initially I didn’t know my limits or understand what would help, so I decided to do experiments. As mentioned earlier I thought of myself as a “CFS scientist.” By that I meant trying things and keeping records would generate a great deal of ‘data’ that I could analyze.

Sometimes I conducted explicit experiments, for example trying out a certain level of exercise and then observing the consequences both during the exercise and later. 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 what I was doing wasn’t truly ‘science’; with only one subject, I couldn’t have a randomized controlled trial. All the same, I felt confident that I could learn a lot using 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 produce 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.

Looking back, I see that the few minutes a day I spent keeping health records were one of the most productive aspects in my approach and crucial to learning how to pace myself. 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 pacing by showing me that it was working.

1) Linking Cause and Effect

The log I used the most was similar to the Activity Log, posted on the self-help program’s website. My goal was very simple. 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 my overall activity level, the amount of sleep and rest I got, exercise, and stressors (both people and situations). For effects, 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. Overall, my goal was to understand why some days were better than others, so I could do more of what helped me.

What did I learn? Many things; here are a few. 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. As I describe in chapter 12, reviewing my records for 1998 and acting on what I learned led to my eliminating relapses.

2) Shaping Behavior

I found that, in addition to being a record of my behavior, my logs 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 self-help 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.”

3) 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, the few minutes I spent each day keeping records produced a tremendous set of benefits.

(If you are interested in keeping records, you can find logging forms and instructions on keeping records on the Logs, Forms and Worksheets page of the self-help program website.)