Key 5: Learn to Predict the 'Unpredictable'
(From the series Ten Keys to Successful Coping: 2001)
By Bruce Campbell
In the last article I described the benefits of the daily practice of pre-emptive resting. One or two brief rests a day can reduce symptoms and increase energy. In this article I would like to discuss another daily practice which offers a big payoff: a few minutes of record keeping.
Keeping written records of symptoms and daily activities can be a powerful tool for gaining control over chronic illness. A health log offers a way to understand fluctuations in symptoms, to discover what we do that makes our illness worse and those things that make us feel better.
If you've been confused by the ups and downs of your illness, logging can help you make sense of what have seemed unpredictable swings in your symptoms. Also, logging can be a source of motivation and inspiration; seeing written proof of improvement can provide hope.
Both people profiled in Key 1 declared record keeping to be crucial to their improvement. Dean Anderson says that he kept detailed records of everything in order to find what promoted remission and what triggered relapse.
JoWynn Johns used logging to help her identify what reduced symptoms. She reasoned that if some days were better than others, she ought to be able to discover the conditions that made her feel better. Like Dean, she kept daily records that revealed the connections between her symptoms and other aspects of her life
I used a variety of logs during the time I was ill. Most took only a few minutes a day to fill out. I felt deeply rewarded by the effort. Record keeping enabled 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.
Perhaps the most rewarding use of logging was the two hours I spent at the end of 1998 trying to understand my relapses. First, I reviewed my records for the year to identify my relapses, finding eight. (I defined a relapse as symptoms so intense that I spent at least one day in bed.)
Second, I looked for common causes, finding that almost all of the relapses were associated either with travel or with having a secondary illness. Third, I developed strategies to minimize the effects of travel and secondary illnesses. The result: zero relapses since.
Here are three types of logs to give you an idea of how you might use record keeping. You could use one or more of them or develop your own system. (For printable copies of all our logs, see the Logs, Forms & Worksheets page.)
A simple log to help you determine whether you are staying within your limits is the Envelope Log. To use it, rate yourself on a scale of 1 to 10 for three elements: energy level (available energy), activity level (expended energy) and symptom level. On this scale, 1 represents, respectively, no energy, no activity or no symptoms, and 10 represents the energy you had when healthy, a high activity level or the worst symptoms you can imagine.
You can fill this out once a day or more frequently. Using it three times a day can help you see variations in your energy level and symptom level during the day. You might find, for example, that your energy improves and your symptoms decline as the day goes on or vice versa.
An example of an Envelope Log is shown below. The person who filled it out said it helped her recognize her cycles of push and crash. As the chart indicates, she kept her activity level within her energy envelope on Monday and Tuesday. As a result, her symptom level dropped as the day progressed. Feeling good on Wednesday morning, she tried to make up for the days spent resting by "catching up."
The result of her overactivity was a severe level of symptoms that started in the afternoon and lasted through most of Thursday. The cycle was repeated again over Thursday, Friday and Saturday. On the first two days, she rested up, so that by Friday evening she had only a mild level of symptoms. But she tried to make up for lost time on Saturday by doing errands in the afternoon, which intensified her symptoms for a period of more than a day.
Envelope Log Example
Weekly Diary Log
Another option for record keeping is the Weekly Diary Log. We use this form and the associated Tally Sheet in our Logging Tutorial course. In most groups, 85% or more of the people in the group rate the exercise of keeping a log for one week as "Very worthwhile" when the other options are "Somewhat helpful" and "Not helpful."
Some people report seeing for the first time that their activity is not consistent from day to day. Others say the log helped them finally understand the effects of different factors (sleep, activity, stress, particular people, etc.).
Some say they get a handle on how much activity per day they can do without intensifying symptoms. Others report seeing how the effects of activity are delayed or how certain times of the day are better than others.
People use this log for two purposes. As the examples above suggest, the information they gain helps them to understand aspects of their lives they hadn’t recognized before. Second, they can use the log to get a rough draft of their Energy Envelope or overall limits.
As you can see from the sample Weekly Diary, there is space for each hour of the day from 7 am to 10 pm and also space for recording symptom levels three times a day. We recommend that you use one word or an abbreviation for the activities you record and one letter or an abbreviation plus a number for the symptom level.
After you’ve recorded for a week, you can analyze the results and get an idea of your Energy Envelope using the Tally Sheet (also see sample), which divides the day into sleep, daytime rest and activity.
First, calculate your average hours of sleep per night using the top portion of the form. Take sleep to be the time between going to bed at night and rising in the morning. (If you want to be more accurate, you can allow for time to fall asleep and time awake during the night.)
Then, calculate your rest. Rest includes lying down with your eyes closed and also “light rest”, meaning reading, TV and listening to music, if you find them restful. Finally, settle on activity categories and tally up the time spent there as well. Some common categories include personal care, cooking and eating, childcare, chores, work for pay, exercise, errands, appointments and socializing.
You can use the results as a first approximation of a daily schedule, gradually adjusting your life to similar amounts of rest and activity each day. Adapting to your limits is likely to take an extended period of time. Use the averages you calculate on the tally sheet as a starting point, though you may have to adjust the amount of activity downward initially to bring symptoms under control.
You can move toward consistency using targets or short-term goals. It can help to make daily and weekly plans. In general, increases in activity should be limited to what can be done consistently (at least five days a week).
Another approach is to keep records on your activities and to associate activities with symptom levels. The Activity Log enables you to link causes (your activities) with effects (your symptoms). Activities you might want to track include: amount and quality of sleep and rest, exercise, specific activities (cooking, errands, TV, reading, socializing), emotions and stress.
The form includes columns for recording number of hours of sleep (entered for the day the sleep ended), daytime rest; activities and events of the day; and symptoms (rated from 1 to 10). It ends with a column for the overall rating for the day.
Two Guidelines for Logging
If you are interested in using health logs, you might keep in mind the following two guidelines. To have a useful diary, make your log:
1) Easily Doable: If your diary is easy to use, you are more likely to fill it out. A common rule of thumb is that a log should take only a few minutes a day to fill out.
2) Meaningful to You: Use logging to help you answer questions that are important to you. Whether you use an existing form or develop your own system, tailor the records to your situation.