30. Logs, Worksheets and Rules

Print

Share

Another skill of the self-manager is self-observation. Through becoming aware of the effects of your activity level, your thoughts and your feelings, you can learn what intensifies your symptoms and what helps you to feel better. Then, by changing how you live, you can do less of those things that make you worse and more of those that help.

Your ability to learn from self-observation can be enhanced greatly by keeping records. The first section of this chapter describes record keeping using health logs. Taking a few minutes a day to fill out a log can help you uncover links between events in your life and your symptom level.

Then you can use worksheets and other resources described in the second part of the chapter to translate the insights from your logging into plans, rules and personal guidelines.

Keeping a Health Log

A health log can help you in at least four ways. You can use records to:

• Control symptoms
• Motivate yourself
• Get a reality check
• Explain and document your illness

Controlling Symptoms

If you are like most people with CFS and fibromyalgia, your symptoms fluctuate, both within a day and from one day to the next. When these fluctuations seem random, they can contribute to a sense of frustration and helplessness.

A health log offers a way to understand the fluctuations in your symptoms, a tool for discovering what makes your illness worse and what helps you feel better. This knowledge opens the way to your gaining some control over your symptoms.

For example, records can help you learn how to pace yourself. One person in our program noticed that her symptoms were proportional to her exertion. She used her logs to divide activities into categories of light, moderate and heavy, based on how much energy each activity required and how much it increased her symptoms.

Then she used that information to plan her days so that she could alternate light activities with moderate and heavy ones. She reported, "I can do more now and have lower symptoms."

Other people report that record keeping helped them to recognize that many different factors contribute to their symptoms. In addition to physical activity, they may include emotional events, stress, social activity and sensory information. If you are sensitive to sound and/or light, you might limit your socializing to quiet settings with lighting you can tolerate.

Another factor that can affect symptoms is time of day. One woman used record keeping and experimentation to discover that she is much more alert in the afternoon. When she read in the morning, fibro fog set in after 15 minutes to half an hour, but her mental stamina was much better in the afternoon.

By studying after lunch, she was able to read for two 30-minute sessions with a 10-minute break and could retain the information. Over time, she increased her total study time to two hours a day. Keeping records showed her that when she did something was crucially important.

Records can also show how the effects of activity may be delayed. One person noticed that he felt unusually tired some days in the late afternoon. Through studying his records, he found that these episodes occurred on days when he had exercised earlier in the day. He was surprised at this connection, because he hadn't experienced symptoms while exercising. He experimented with different levels of exercise, eventually finding one that didn't tire him out.

Records can reveal the cumulative effects of activity, showing the importance of looking at periods longer than a day. Some people find that they can maintain a consistent activity level for several days, feeling tired only at the end of the period. Having records helps them think about what level of activity they can sustain.

You can also use your records to understand patterns over even longer periods of time. One person in our program, for example, used his daily logs to understand, and then eliminate, relapses. Reviewing his logs for a year in which he had spent a total of almost two weeks in bed with CFS flares, he found that most of his relapses were associated with either travel or secondary illnesses, such as colds or the flu.

To minimize travel-related setbacks, he decided to limit travel to a few hours' driving distance from home and to take rest breaks while driving. He decided to combat relapses triggered by secondary illnesses by taking extra rest after the symptoms of the secondary illness had ended. In the decade since making those changes, he has experienced no relapses.

Motivating Yourself

Records can also be an important source of motivation and inspiration. Seeing written proof that activity level affects symptoms can provide a stimulus to stick with pacing. Records of progress can provide hope. CFS patient JoWynn Johns, says in her article "Living Within My Envelope," that both factors were important to her.

After recognizing that mental exertion and emotional stress provoked her symptoms just as much as physical activities, she concluded that she would need records to remind herself of those causes of her symptoms. And, she writes, "Color coding with hi-liters enables me to see readily how I'm doing during the month. I find this kind of visible feedback motivating."

Getting a Reality Check

Records can also function like a mirror, offering a reality check. One person in our program said, "Logging brings home to me the reality of my illness. Before logging, I didn't realize that most of my time is spent on or below about 35% functionality. This false perception that I was better than I am led me to overdo things, but now I am less ambitious."

Another person uses a visual record keeping system to help her pace herself. She rates each day and records her rating on a calendar using colored dots. Green means a good day. Yellow means caution. Red means stop: intense symptoms, time to go to bed.

A third person reviews her records to see where she might accept more responsibility. "At the end of each week, I look at my activity log and write a short summary at the bottom of the page, commenting on good experiences, symptoms I had that were not my fault, and symptoms I had [that] I could have had some control over."

Explaining Your Illness & Documenting Disability

Lastly, you can use records in discussions with physicians and in substantiating a claim for disability. Health records can document your functional level and show changes over time.

Sample Health Diaries

There are many ways to track your life using written records. Here are two health diaries to get you started. You can use one or both of them or develop your own system.

Symptom Log
The Symptom Log consists of a list of symptoms common to people with CFS and fibromyalgia. To use the log, make entries one or more times a day, using one column for each set of entries.

You can use this log to:

• Define your overall level of symptoms
• Determine which symptoms are most important
• Document daily swings in symptoms
• Recognize interactions among symptoms
• Document changes in symptom levels over time

The example at the end of the chapter [printed edtion only] shows a Symptom Log completed for a five-day period. The chart shows a symptom cluster consisting of five elements: fatigue, pain, fogginess/memory problems, poor sleep and depression. These symptoms were at moderate to severe levels during at least part of every day. In addition, this person had two days with headaches.

The log indicates that the person's symptoms usually improved during the day and were generally lowest at night. The exceptions were Wednesday and Thursday, when she was more active than usual in the afternoon. The effects of overactivity were delayed, not occurring until the evening.

The person using the log also observed some connections among symptoms. Her main symptoms (fatigue, brain fog, and muscle pain) were lowest in the mornings that followed nights with good sleep.

She also saw a connection between depression and her other symptoms. Her depression was lowest when her other symptoms lightened in the morning, and higher when she experienced stronger symptoms.

Activity Log

The Activity Log helps you associate activities with symptom levels. Using the log, you can recognize connections between causes (your activities and the events in your life) and effects (your symptoms). Activities you might want to track include amount and quality of sleep and rest, specific activities (cooking, errands, TV, reading, socializing), exercise, emotions and stress.

You'll find a blank activity log on our Logs, Forms and Worksheets page. Using it, you can record the number of hours of sleep (entered for the day the sleep ended), daytime rest, key activities and events of the day, symptoms with severity rated from 1 to 10, comments and an overall rating for the day on a scale of 1 to 5. On this scale, 1 is a very poor day, 3 is an average day and 5 a very good day.

To give you an idea of how to use the form, there is a sample Activity Log at the end of the chapter [print edition only]. The person who filled it out was interested in finding patterns in her symptoms and associating the patterns with events in her life. Before starting her record keeping, she noticed an improvement in her symptoms due to two changes she made.

She had more stamina after starting two half-hour pre-emptive rests each day. Also, she reduced her brain fog and became more productive in her half-time job after changing her work schedule from mornings, when her symptoms are usually at their worst, to afternoons, a better time of day for her.

Even after making these changes, she had a higher level of symptoms than she wanted, so was motivated to start logging to identify some reasons why. She decided to make entries in her log three times a day. She planned to enter the number of hours she slept at night as soon as she woke up. She also expected to write entries just before going to work and at bedtime.

She rated Monday as average (3). During the morning, she had mild pain and fatigue, plus a small amount of brain fog. She experienced no symptoms in the afternoon, her best time of day. In the evening, she felt moderate brain fog during dinner in a noisy restaurant and had trouble getting to sleep.

On Tuesday, she had a higher level of symptoms in the morning, plus symptoms in the afternoon. For this reason, she rated the day as below average. She asked herself why she had higher than usual symptoms. There was no obvious cause on Tuesday for the flare. Her activity level was similar to that on an average day.

But her activity level on Monday had been higher than normal. In addition to her time at work, she had done shopping and cooking in the morning, and had gone out in the evening. Also, she had skipped her rest after sleeping poorly on Sunday night. Her experience was probably an example of how the effects of events can be delayed. Record keeping can help make delayed reactions more evident.

Because her symptoms were even more intense on Wednesday, she rated that day as much below average. She rested in the morning, which helped reduce her symptoms somewhat, but she left work early. She was probably feeling the cumulative effects of several days' activity.

On Thursday, she felt a little better when she got up and spent much of the morning resting before going to work. That rest, in combination with all the rest the previous day, seemed to help her back to an average level of symptoms overall. She noted that fibro fog set in after she had been on the computer for 45 minutes. This experience indicates that exceeding limits on mental activity can lead to symptoms.

She forgot to note her activities on Friday morning, but rated the day as better than usual because of having low symptoms in the morning and none in the afternoon or evening. She slipped back to below average on Saturday after spending part of the afternoon doing errands and an hour gardening.

The combination resulted in her standing for a total of three hours, much beyond her one-hour limit. She decided to keep a movie date with a friend for the evening, even though her symptoms were moderate.

Her symptoms were only a little above average on Sunday morning, but she was able to eliminate them by resting for several hours. The rest of the day was symptom-free, except for an hour in the evening, when she experienced moderate brain fog following a phone conversation with her sister. Her sister had called to announce that she was pregnant. The person was excited by the news, then remembered that emotional events, whether good or bad, often trigger brain fog.

Guidelines for Logging

If you are interested in using health logs, you might keep in mind the following two guidelines. Make your log:

1. Easy to Use. 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, not because you think you should or to please others. Whether you use an existing form or develop your own system, make sure the records fit your situation.

Record on a daily basis and set aside time regularly to review your logs. Plan to spend some time on a regular basis (for example, once every week or two) going over what you have written to look for patterns and connections. If possible, ask someone to go over them with you.

Planning Forms & Personal Rules

Taking what you have learned from your logging, you can create a set of individualized guides for better living. The Daily and Weekly Schedule worksheets, described in Chapter 10, give you a way to translate your understanding of your capabilities and limits into daily and weekly routines.

The Relapse worksheet, described in Chapter 13, is a way to summarize your learning about what causes your relapses and how to minimize them.

Another type of guide used by people in our program is personalized rules for living well with CFS and FM. These can take three forms. First, you might state a few rules crucial to controlling symptoms. An example is the person mentioned earlier who has three rules for herself: no more than three trips outside the house per week, no driving beyond 12 miles from home, and no phone conversations longer than 20 minutes.

Second, you may set rules covering many circumstances. For example, after you have defined your limits, you can establish rules for how long you stay on the computer, how long you talk on the phone, how much exercise you do, how far you drive, when you go to bed at night and get up in the morning, when you rest during the day, how long you spend in social situations and so on.

Third, you might write down your strategies for symptom management. For example, for managing fatigue, people in our program often mention taking daily rests, getting enough sleep, limiting the number of times they leave the house each week, breaking up tasks into small chunks and limiting the time spent standing up.

For managing pain, common strategies include pain medications, exercise, adequate sleep, daily rests, massage and heat and/or cold.

A related idea is, to quote the title of an article on our website, to develop a set of "Personal Guidelines for Managing Chronic Illness." The idea with this approach is to have a few principles to guide your life with chronic illness and to be a reference in times of confusion. Here's what I came up with for myself. The words in italics went on a 3 x 5 card for quick reference; I printed the full text on a sheet of paper.

1) Live within my energy envelope
I believe I can reduce symptoms and regain control by living within my limits. For me, this means taking scheduled rests daily, keeping a daily log, returning only gradually to my normal routine after a relapse or illness and avoiding stressful people and situations.

2) Extend the envelope gradually
Recognizing that CFS controls the timetable and extent of my improvement, I will experiment occasionally to expand my activity level, but not more than 5% to 10% at a time. I recognize that not all my experiments will work.

3) When all else fails, go to bed
There are times when the best course is to surrender to the illness. This guideline gives me permission to acknowledge that at times I am powerless over the disease and the smartest course is to give in to it.

4) Accept that I may not recover
I believe I can create the conditions for recovery but can't control whether I recover. Thus, I try to focus on feeling better, which I believe is under my control to some degree.

To organize your logs, forms, worksheets and rules, consider using a three ring binder with several dividers. Label the tabs on the dividers in a way that's helpful to you. You might have tabs for worksheets, plus others for your logs, one for your rules and another for a list of your medications.

Alternately, you could keep your materials in file folders or organize them in some other way. The important thing is to develop a system that fits your situation, whether you use existing forms or create ones of your own.

Resources

Copeland, Mary Ellen. Winning Against Relapse. Oakland: New Harbinger, 1999.

Starlanyl, Devin and Mary Ellen Copeland. Fibromyalgia & Chronic Myofascial Pain: A Survival Manual. Oakland: New Harbinger, 2001. 2nd ed. (See Chapter 16: Wellness Recovery Action Planning.)

FlyLady website: www.flylady.net/. (See section titled "Control Journal.")