A Guest Blog From Lisa Johnson
(Lisa Johnson, a former marathon runner, first came down with chronic fatigue syndrome (ME/CFS) in 2003. She temporaily recovered and returned to her ‘hare-like’ existence only to suffer a severe relapse in 2004. She has been unable to work since then).
Aesop’s fables date from the 6th century BC. He published in excess of 300 fables, ancient pearls of wisdom. (Aesop collected the fables, he didn’t write them). Who doesn’t remember the famed fable, “The Tortoise and the Hare”? Until I became an ME/CFS statistic, I dismissed it as a silly child’s tale. Face it, in our culture we are groomed to become high achieving hares.
The Hare – The theory of Type A and Type B personality originated in the 1950s. Many of us who develop ME/CFS share characteristics of the Type A personality, myself included, (I epitomize Type A). Always driven to succeed, I pulled all-nighters, was doggedly determined to get A’s so I could graduate from an Ivy League college. This burn the candle at both ends approach to life served me well… until I became ill.
An Early Lesson: It was in college that I learned my first lesson about pacing. Marathons were the rage. Flash back to a sultry summer day: my college sweetheart and I waiting at the starting line ready to run our first marathon. Both competitive, we ran the first nine miles at full speed, but with temperatures in the high nineties and a paucity of water stops, I was running out of steam and considered dropping out of the race. My boyfriend, still feeling strong, made a mad dash towards the finish line, as he was a contender to win a trophy.
Ironically, I placed first for the women by walking, resting, and running at a slow clip. My boyfriend was nowhere to be seen, and after investigating, I learned that he had been rushed to the emergency room and was hooked up to IVs due to dehydration and heat stroke.
I ignored this lesson on pacing, addicted to the overachiever mentality. In fact, a few years later I won a full length Iron man triathlon race. I learned that I could override my body’s fatigue and that I’d find a second and third wind. My competitive nature served me well when I felt well, but now that I have ME/CFS my greatest challenge has been to change my personality style from Type A to Type B. Type A behavior leads to the push crash cycle, which is counterproductive for those of us with a debilitating illness, often resulting in health setbacks and relapses.
Needless to say, old habits die hard. Even my pursuit of the elusive cure for ME/CFS has been intensive. To uncover a quick fix, I have tried practically every accessible supplement, alternative and mainstream treatment, and the search has worn me out.
The reality that doctors lack a definitive cure for ME/CFS is fertile ground for feeling powerless. When I asked my primary care doctor (who was rated the #1 doctor in my HMO plan), about treatments for Chronic Fatigue Syndrome, she told me there were none. Nothing could have made me feel more powerless, more disillusioned. In Greek mythology, Panacea, the goddess of healing, was said to have a potion with which she healed the sick. I have found no panacea, but thanks to the Internet I have found some valuable sources of information.
Type A Personality Meets…..Bruce Campbell (Ph.D). Surfing the net in 2005 I discovered Dr. Bruce Campbell’s online self help classes. Bruce, a former ME/CFS patient and champion of our cause, has facilitated over 250 self-help online classes since 1998. His books are practical sources of applicable knowledge. I have taken most of his classes and am considered an alumni. His bottom line message is a modern version of Aesop’s; doing less and pacing is likely to result in health improvements and increased energy.
For me, it has been a rocky internal battle to transform my Type A mindset, a colossal effort to retrain myself to do less. However, with Bruce’s guidance and role-modeling and the support of other resourceful friendly class participants from across America and from around the world, (including Europeans, Canadians, even Aussies), I have begun to make progress. It would be impossible to impart the totality of tools and wisdom I have acquired from these groups, but I would refer the reader to an article by Jo Wynn from the CFIDS Chronicle in 1999 for an articulate detailed description of Bruce Campbell, Ph.D.’s programs.
Here Are Some of the Things That Have Helped Me.
Pacing – Bruce inspires, mentors, shepherds his lambs to lay in the pasture and rest. He emphasizes the need to practice pacing techniques. How these are applied varies from individual to individual. For one person it might mean setting a timer when initiating an activity and scheduling regular relaxation time, for another it could mean limiting the number of phone calls per day or per week. As an example of pacing, in the past I’d have played four or five rounds of cut-throat Scrabble, but recently I played a non competitive game with a friend and stopped half way through to avoid overexerting.
The charting techniques he provides are particularly helpful in enabling one to find and live in one’s energy envelope. Incorporating pre-emptive rests is a hallmark tool. For example, many members have noted that if they are going to travel, they must rest for a day or more before and after their trip. Posting written targets, (goals) to the group each week helps with accountability. The online format the courses use is ideal even for a shy private person because members can post as little or as much personal information as they choose.
Setting Priorities – Since our energy is finite, Bruce encourages defining priorities. Personally, I have learned that I must choose between paying bills, preparing a simple meal, or talking to a friend. One member described her life as “walking along the highway as vehicles whiz past.” She went on to say, “listing priorities in general as well as daily priorities really has helped me understand that I am making progress on those things that are most important to me. The other things — well, maybe sometime in the future, or maybe never.”
Another member succinctly summed up core lessons : “…I have learned that rather than going with how much I can get away with (as I have for years), I work out how much I can do (i.e. going out of the house two times per week) without sending me backwards. So, no matter how good I feel, these are my limits. The energy envelope is made up of 50% for use, 50% for healing. Now when I am feeling good, rather than using it, I think of how much benefit this (resting) is doing, healing and allowing me to recuperate. I tell myself, “SAVE ENERGY, DON’T SPEND IT”. I was reluctant at first to go for using just 50% of my capacity, but found that I am happier, not pushing, more peaceful, and feel in control… I am also much more vigilant about what I do with that 50%. It has to be good.
Paradoxically, I am also much better at saying ‘no’ now because I realize using all my energy, or more, is damaging to my health, mood, life experience. The struggle is (mostly) over and I increasingly feel better for it.”
Avoiding Stress – Bruce’s course is not all about pacing; he also advocates stress avoidance, as stress is an energy drain. Techniques range from avoiding certain people to avoiding over-stimulating settings that result in sensory overload.
Charting, Pre-emptive Resting, Setting targets…. I applied Bruce’s pacing techniques to writing this article, setting one of my targets to write for only a half hour at a time, sandwiched by rests of at least an hour. Any diet requires long term changes in lifestyle and habits to be successful, and I’ve slowly shifted my ‘activity diet’, so that it contains more rest and healing time and less active time. I no longer resent rest, but embrace it as a healing tool. My epiphany has been to think of rest as medicine.
It’s been no small feat, learning how to live life in the slow lane. Taming the wild hare within requires discipline and commitment. Aesop didn’t provide a road map on how to become tortoise-like, but Bruce Campbell has created a user friendly ready-made guide. It’s made a big difference for me and I highly endorse Dr. Campbell’s approach.
Lisa Johnson