Acceptance, Discipline & Hope: A Story of Recovery from CFIDS

By Dean Anderson

Editor’s Note: Reprinted with permission from the Winter, 1996 CFIDS Chronicle, the magazine of the CFIDS Association of America. - Bruce Campbell

Author’s Note: I read with great interest Thomas Day Oates’ article “Recovery,” in the Summer 1995 Chronicle. I agree that we each have the means to positively impact our health, which for some PWCs may mean partial, and for others substantial, recovery.  That Mr. Oates is an extraordinarily spiritual and disciplined person I have no doubt.  However, reading between the lines of his inspiring story one can see circumstances not available to all PWCs [People with CFIDS]. I hope that my story will provide encouragement to those who, although ill, must continue to support themselves and who perhaps aren’t as spiritual as Mr. Oates.

During my eight-year struggle with CFIDS, I supported myself by working part time the first several years, returning to full-time work as I gradually improved.  From these circumstances it may seem that I wasn’t as sick as a lot of PWCs, and this is probably true.  I would estimate that I “functioned” at about 60 percent of my “healthy” level, but my quality of life was reduced significantly below that (functionality not being everything in life, regardless of what the Social Security Administration folks say).  Each day was a struggle to keep my job and the hope alive of better days to come.

Today, nine years after the onset of my illness, I consider myself “substantially recovered,” a term which I know begs defining.  To me “recovered” means that I no longer dread relapses and that I have returned to a full and fulfilling life.  It doesn’t mean that I can indulge myself in certain former hobbies, such as endurance competitions.  It does mean that I can engage in vigorous outdoor activities at a level more or less normal for a person in his early fifties and that I can work full time, travel and enjoy an active social life.  For these blessings I pay a small price:  I live within certain limits.  I pay attention to my body and stay in touch with my emotions.  I accept a daily health regimen and I don’t ever burn my candle at both ends.

I improved somewhat during my first five years with CFIDS, but the biggest gains occurred after the fifth year. I don’t subscribe to the notion that one’s chances of recovery diminish after a certain amount of time. To believe that is, in my view, to reject the idea that one can, through one’s attitude and behavior, affect one’s recovery. At the same time I don’t believe any of the remedies, medicines or food supplements I tried helped me one bit.

To Accept or Not to Accept CFIDS?

Over the years, I read several reports by recovered or improving PWCs where they said they started improving after “accepting” or “resigning themselves” to their illness.  Until recently I rejected this mind-set as defeatist or fatalistic.  In America we are taught from early childhood that succeeding in life is important and that striving is the key to achievement.  I initially viewed the healing process as one in which I would succeed through determination and hard work.  I realize now that there is a problem with this type of thinking.  It leads to a roller-coaster ride of emotional highs and lows.  During the years that I consciously “tried” to get well, I perceived remissions as steps up a ladder to recovery.  The path would be ever upward.  When relapses inevitable followed, I was devastated by the apparent failure of my will and my conscious efforts.

I believe today that a certain kind of acceptance may be important to recovery.  It is not a resignation to one’s fate as a sick person.  Rather, it is acceptance of the reality of illness and of the need to lead a different kind of life, perhaps for the rest of my life.  I know absolutely that I will never again enter a foot or ski race.  I know I will live for the rest of my life within certain modest limitations.  I know that the term “moderation,” which I previously despised, applies to me in spades and is in fact the key to my future well-being.  The “effort” required to recover from CFIDS is an exercise in discipline and hopefulness, not determination and striving.  The discipline required is exactly the opposite of the discipline so valued in the scholar, professional or athlete.  It is the discipline to recognize and adhere to one’s known limitations and to follow a strict regimen without periodically lapsing.  It is the discipline not to succumb to family or societal pressures to get back into the rat-race.  It is the will to protect oneself, to not over-do and to find ways to be productive and find fulfillment under unfamiliar and difficult circumstances.

The Healing Attitude

I can attest to the value of some of Thomas Day Oates’ coping and healing techniques described in the Summer ’95 CFIDS Chronicle: (1) keeping a daily journal of the substances and activities which seem, no matter how subtly, to contribute either to remission or relapse; (2) categorizing all foods and drinks as either stressors or helpers; (3) eliminating negative influences (people, attitudes, emotions, etc); and (4) learning to be alone in silence (and especially learning to live without television).

During the first few years of my illness, I harbored resentment and anger toward my ex-wife, former bosses and business associates whom I felt had short-changed me.  I also felt a certain amount of guilt and regret over past failures and problems I had caused others, including my children.

Perhaps it is healthy to allow negative emotions to flow freely in and out of one’s consciousness, but it is decidedly unhealthy to allow negative emotions to control one’s thought patterns and being.  If I can’t enjoy a book, a favorite piece of music or a conversation without my mind drifting off into regret or revenge fantasies, then I know my subconscious is in control.  There are two basic ways to deal with this: either delve into your past and try and get at the root of learned “programs” which usually stem from childhood, or work at changing your attitude.  I have found the latter more productive.  As Alcoholics Anonymous teaches, changing one’s behavior is a good way to develop a more positive attitude.

Onset and Initial Stage

In December 1986, feeling sick with flu-like symptoms, I went to a general practitioner for a checkup and was diagnosed with a mild case of mononucleosis, which the doctor said was self-limiting and normally required six weeks to three months for complete recovery.  When I asked him if I should curtail my ski training and racing (I had been active in cross country ski racing for about 10 years at that point) he said no, if I felt good enough to train, “go for it.”  I skied conservatively two or three more times and then decided to stop training entirely.  However, in mid-February, having felt normal for a week or so, I skied a 30 km course in Sun Valley, Idaho, where my two children were competing.  The next day the flu-like symptoms returned in force and worsened in the following weeks.  I experienced memory lapses, difficulty concentrating, crushing fatigue after a few hours in the office, insomnia, low-grade fevers, tender lymph nodes and a constant sore throat.  With my company’s concurrence, I reduced my work schedule from over 10 hours a day to six or fewer.

My wife asked me for a divorce the same month I became sick and I moved out of the family house.  I accepted the need for and reality of the divorce intellectually, but felt emotionally out of control for several weeks.  A toxic brew of grief, anger, sadness, frustration and resentment ebbed and flowed.

In May 1987, not having even begun to recover, I saw Dr. Daniel Peterson, whom I read about in an article about “yuppie flu.”  Two months later Dr. Peterson after conducting a series of tests to exclude other possible diseases, he diagnosed CFIDS.

I saw Dr. Peterson periodically for the next eight years and regard his steadfast support as invaluable.  To be sure that I wasn’t developing complications or new problems, he periodically ordered various tests.  When some started to indicate improvement (after three to four years), it gave me a basis for hope.  Above all, he listened and let me know that he believed I was doing everything I could to recover.

Developing a Recovery Strategy

During my first year of illness, I didn’t know anyone else with CFIDS.  I didn’t know where to turn for advice and support.  My basic attitude was that if anyone recovered, I would.  Dr. Peterson’s best guess was that, in general, about 20 percent of PWCs recover, while 60 percent improve somewhat over time.  I visited a chiropractor, a homeopathic doctor and an acupuncturist without any perceived benefit.  I began to realize that recovery might depend solely on my own efforts, and with that insight, I began formulating a recovery strategy.

My first consideration was whether or not to work (and, if so, whether full- or part-time).  I decided to work six hours a day, which I estimated to be the maximum time I could cope (in spite of feeling terrible) and also the maximum time I could work without risking deterioration of my condition over time. The company I worked for developed renewable energy sources.  My employers were primarily interested in my ability to get power plants up and running.  I believed I still could, especially if I could remove myself from the pressures of the home office.  I sought assignments in remote areas, where I could control my daily schedule without others looking over my shoulders as I came and went.  Controlling my schedule freed up time for naps, meditation, visualization and relaxation.

My second decision was whether or not to exercise.  Dr. Peterson recommended that I do light exercises for 10 to 15 minutes a day.  After a few months I decided I had to risk doing more because my sleep, appetite and hopeful attitude were being compromised.  I felt both ill and slothful and watched in horror as my muscles atrophied.  Before getting sick I was an exercise junkie, hooked on a daily fix of endorphins and adrenalin.

I experimented systematically with progressive levels of exercise.  I used a heart-rate monitor to gauge the intensity of my workouts and I carefully recorded exercise duration and how I felt before, during and after each workout, and especially how I felt the next day.  The penalty for over-exercise was a relapse which started about 24 hours after the infraction and lasted a week or more.  Once, when I let someone talk me into going hiking, the penalty was a relapse of several months.

Third, I questioned what treatments to take.  I found that other seemingly credible PWCs were experimenting with an array of remedies, including various herbs, tricyclic anti-depressants, gamma globulin, Kutapressin, homeopathic treatments and vitamins in heavy doses.  I tried several of these without ever noticing improvement.

Fourth, I had to decide how to live on a daily basis.  Should my regimen be flexible or rigorous?  Should it allow for spontaneity and surprise or be carefully structured and controlled.  Where did family and friends fit in?

Living a Recovery Strategy

During the first three or four years of my illness I didn’t know that I was living a recovery strategy, because I didn’t know whether or not I was recovering.  I was experiencing a frustrating cycle of relapses and remissions with no end in sight.  The penalty for each “overdoing” mistake seemed far out of proportion to its seriousness.  After about two years, and in spite of setbacks, I realized that if I didn’t exceed my known limits, I probably wouldn’t decline.  But I wanted to recover.

Exercise:  I learned that by paying close attention to my body I could do far more exercise without relapsing than Dr. Peterson thought I should be able to.  I came to understand that the best time for me to exercise was in the late afternoon or early evening after a nap.  Exercising in the morning left me exhausted by mid-afternoon.  I came to appreciate the importance of exercising in pleasant surroundings and in a calm mood.  I learned that right kind, intensity and duration of exercise for me.  This consisted of a combination of alternately jogging and walking (depending on how I felt) and strength exercises (such as push-ups).  The important thing was to not force the pace and to allow adequate rest between exercises.

I received immediate benefits from exercise: improved appetite, more restful sleep, a sense of accomplishment and an instantaneous feeling of peace and hope.  Perhaps most important was learning to enjoy exercise without succumbing to the urge to compete or “train,” which meant I had to give up any idea of progressing - of doing more push-ups or of jogging farther or faster.  Eventually, I was able to increase the exercise (years later, not weeks or months), but it was a bonus of recovery, not a conscious goal.  Had I set training goals, as healthy people do, I would have invited not only a succession of relapses, but also discouragement and perhaps demoralization.

Work:  I gradually learned to pace myself to stay within my limits.  A lunch break out of the office was helpful, especially if I ate a light salad or pasta dish and time was left for 15 minutes of upright dozing or meditation.  Leaving the office by 4:00, whenever possible, was important.  Following work, a full-hour nap followed by 20 minutes of healing visualization made exercising in the evening thinkable.  On business trips, a nap on arrival at the hotel put me in touch with my body and shut off the adrenalin.  I learned to say “no” to late dinners.  I didn’t exercise on business trips, because I lost touch with my energy level when out of my home environment.  I learned not to eat after 7:00 pm and never to take overnight flights, no matter how many of my peers were doing it.

Social Life: It was difficult to decide whom to tell about my illness.  I told long-standing friends, close business associates and women I dated after my divorce.  These people needed to understand the reasons behind my restricted activities and schedule.  To others, including most business contacts, I avoided disclosing it and tried to act as normal as possible.  I suffered through many a workday feeling like death warmed over, but putting on a show of normalcy.