Key 3: Experiment
By Bruce Campbell
(Note: From the series Ten Keys to Successful Coping: 2005.)
Because there are no medications that are widely helpful for managing the symptoms of CFIDS or fibromyalgia, finding effective treatments is often the result of trial and error. You try different medications until you find what helps.
That common experience is a metaphor for living with long-term illness. It's a process of experimentation, in which you try things to find what works for you.
This article explains three strategies you can use to apply an experimental approach to your illness: problem solving, record keeping and target setting.
Problem Solving
Because both your illness and other parts of your life change, you continually face new problems to solve. For example, your pain might become more intense but the strategies you have been using don't seem to help. Or you improve and would like to travel, but wonder how long a trip would be safe.
Problem solving offers a flexible technique for addressing issues like these and for managing chronic illness in general. To use problem-solving, practice the following three steps.
1) Select a Problem
Identify a problem that is important to you and that you feel ready or compelled to work on now. It will usually be something that interferes with your life, makes your life more difficult or prevents you from doing something important.
One example might be holiday celebrations. For years before becoming ill, you hosted your family's festivities, cooking all the dishes. You feel pressured to entertain your family in the same way now, but doing so triggers a severe flare that lasts two weeks. You feel caught between two unattractive solutions: doing things as before but with a high level of symptoms or giving up something that you value.
2) Explore Possible Remedies
Next, brainstorm how you could handle the situation differently in the future. Often, problems have multiple causes, so a combination of solutions may be appropriate. The idea at this stage is to consider as many possibilities as you can imagine. That way you are likely to view your situation in fresh ways.
In our example, family customs and expectations are in conflict with your current limits. Now you need help or perhaps will have to give your former role to others.
Practical solutions to your holiday dilemma include: hosting the celebration but having others bring the food; hosting but cooking only one dish; rotating the celebration among other relatives; and going out for a family meal. Each solution requires that you and your family examine and modify expectations for how the work of holiday celebrations is handled.
3) Experiment with Solutions
Try various solutions and evaluate the results. Probably some potential remedies won't work, but perhaps others will prove helpful. Your final solution may be a combination of several approaches. You can see your efforts as a series of experiments. With that view, you can more easily accept disappointments and move on to another attempt.
Here's one set of possible solutions to the holiday celebration dilemma. Your immediate family is agreeable to having a less ambitious celebration but your extended family resists. (They have never believed you were truly ill.)
You and your husband accept hosting the family celebration for at least one more year. He and your children agree to share cooking responsibilities. You conclude that it may take several years to settle into a new holiday routine that all family members will accept. You also decide that some members of your family may never accept your limits.
Record Keeping
You can see your life as a series of experiments. For example, if you are more active some weeks than others, that's an experiment that can help you determine the effect of activity level on your symptoms. Records can help you to document and to understand your experiments
A health log offers a way to make sense of the fluctuations in symptoms, to discover whatyou do that makes your illness worse and those things that make you feel better. If you've been confused by the ups and downs of your illness, logging can help you understand what have seemed unpredictable swings in your symptoms. Usually only a few minutes a day are needed to make notes that reveal the connections between life events and symptoms.
You can keep records to track symptoms, define your energy envelope, recognize connections between activity level and symptoms or to find what helps you feel better. You can then use the lessons you learn from your records to improve your life.
One student reported that she used her logs to categorize activities as light, moderate or heavy, based on how much energy each activity required and how much it increased her symptoms. She used that information to plan her days to alternate light activities with moderate and heavy ones. She reported that the result was "I can do more now and have lower symptoms."
Other people report that record keeping helped them to recognize that many different factors besides physical activity contribute to their symptoms. For example, one person recognized that mental activities like reading, work on the computer or bill paying created brain fog.
Typically the fog set in after 15 minutes or so. She kept records for one week and found that her mental stamina was much better in the afternoon than in the morning. In the afternoon she could read for two 30 minute sessions with a 10 minute break.
Experimenting with reading at different times of day revealed that when she did something was crucially important. Other factors that often contribute to symptoms are emotions, stress and social activity. Logging can reveal the role these factors play.
Records can also be an important source of motivation and inspiration. Seeing written proof of the effects of action on symptoms can provide a stimulus to stick with pacing. Records of progress can provide hope. JoWynn Johns, described in Key 1, noted how both factors were important to her learning to live within her energy envelope.
After recognizing that mental exertion and emotional stress provoked her symptoms just as much as physical activities, she concluded that to appreciate that fact she would need records. "I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity."
Her record keeping had a second purpose. Not only did it help her recognize patterns between symptoms and events in her life, it also motivated her. "I also wanted concrete evidence of the effects of staying inside my envelope....I had to show myself that it was worth it."
Lastly, records can be like a mirror, offering a reality check. One person says "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."
Target Setting
Target setting is a procedure that improves your chances to have successful experiments. Using this technique, you can make changes in your life by taking a series of small steps, each of which has a good chance to work.
Your plan should consist of specific actions that you can realistically expect to accomplish in the next week. Being specific in stating the plan is the key. The target you set for yourself should be concrete and measurable. Rather than something like "I want to get more rest," you should state specific actions that are under your control. For example, you might plan to rest 15 minutes in the late morning four days in the next week.
You are more likely to succeed with your experiment if you first test whether it is realistic. To do that, ask how confident you are that you can complete the target. Answer by giving a number between 0 and 10, where 0 means "not confident at all" and 10 means "totally confident." If the answer is 8 or higher, you have a good chance to succeed. If not, try restating your goal in less ambitious terms.
Another way to improve your chances of success is to write out your plan. In our groups, we use a Target Form for that purpose. Putting your intention in writing helps strengthen your commitment. Other ways to make it more likely that you will follow through include telling other people about your plan and posting your target somewhere you will see it frequently, such as on the refrigerator.
Think of target setting as a series of experiments. If you meet your target, you have a successful experiment and can gain some control over your illness. If the results are different from your expectations, you have an opportunity to learn something useful about your illness and your approach to it. By asking what lessons you can find in your experience, you can assure a positive outcome regardless of whether you meet your target.
Print
Email a Friend