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 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 1998 issue of the Chronicle. Since then, Bruce has expanded his text into The CFIDS Helpbook: A Guide for Managing Your CFIDS. 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. It helps us find a way of living that helps to reduce symptoms and possibly leads to significant recovery for some. 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 on-line 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 messages 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, we all 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.” The course is now offered in several locations in the San Francisco Bay area and via E-mail over the Internet. Also, the Helpbook is available separately for people who want to try this methodology. Although the Helpbook itself is a great resource, its usefulness is enhanced by working through it with a group or a friend.
The CFIDS Helpbook: A Guide for Managing Your CFIDS
By Bruce Campbell, PhD, 1999
This is the companion book to The CFIDS Self-Help Course, which Bruce Campbell designed. More information about the course and book are available at Bruce’s web site, www.flash.net/~brucepa/cfidshelp.htm, by E-mail at CFIDS_Self_Help@yahoo.com, or by mail to Bruce Campbell, 777 San Antonio Road #121, Palo Alto, CA 94303.
JoWynn Johns, 61, has been disabled by CFIDS since January 1993. Before she was forced to stop working, she had developed an independent management consulting practice following 25 years as a corporate executive.
Reprinted with permission from The CFIDS Chronicle.