Support For Changing Our Lifestyle

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By JoWynn Johns

Note: The following article was published in the July/August 1999 CFIDS Chronicle, the magazine of the CFIDS Association of America. JoWynn Johns is a graduate of the CFIDS Self-Help course.

While many of us believe living "inside the envelope" would help us reduce our symptoms, we often find it difficult to do so. Finding the right combination of activity and rest can be a daunting challenge. Where can we get the strength to resist the forces that push us "outside our envelope," that prevent us from even discovering what "our envelope" is?

Bruce Campbell, a PWC who has had extensive professional experience with people who have other chronic illnesses and disability, has developed the CFIDS Self-Help Course to address just this question. He wrote about his work with CFIDS support groups in the November-December issue of The CFIDS Chronicle.

Since then, Bruce has expanded his text into "The CFIDS Helpbook: A Guide For Managing Your CFIDS." [The course has since been re-titled CFIDS and Fibromyalgia Self-Help course and the Helpbook has since been replaced by Managing Chronic Fatigue Syndrome and Fibromyalgia.] He has led several more groups through the course, and he has introduced an e-mail version which he pilot-tested this past winter.

Bruce's CFIDS Self-Help Course provides the information and the structure needed to facilitate changing one's habits and routines---something that is hard for all of us. Not a prescription for what to do, the course is a process of discovering for ourselves what we uniquely need to change in our lifestyle.

Just as Weight Watchers and Alcoholics Anonymous provide the information and structure people need to change their eating and drinking habits, this course provides what PWCs need to change our daily routines and find a way of living that helps to reduce symptoms and that, in some cases, has led to significant recovery. While some of us can do it on our own, many others find that mutual support is the necessary ingredient for success in changing ourselves.

I was privileged to participate in the pilot e-mail group. Six of us---Beth, Judy, Suzy, Murielle, Cathy, and I---joined Bruce in this online experiment. Every other week, we read a few pages of text and responded to questions, topics for discussion, and assignments on which we reported results. We sent our responses by e-mail to a list server that distributed the message to all members of the group.

We also engaged in private, one-to-one exchanges, getting to know each other. In this way, we became a support group, worrying about each other, sharing coping tips, encouraging, commiserating, and congratulating when appropriate. With a break for the December holidays, it took us about four months to complete the course.

At the end, all of us reported that we had benefited. We had learned and experienced the value of planned, regular, "smart" rest and of pacing our activities. We'd seen how we could use various ways of recording our experience so that we could see the results of our self-experiments.

And we'd had strong support for trying something that was difficult and uncomfortable: living within our limits. As a result of this program, I, for example, have succeeded in establishing a daily rest schedule that has enabled me to reduce the total time I had been spending in bed while having more "Good Days".