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Living Within My Envelope: A How-To Story

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By JoWynn Johns


Note: The following article was written in November, 1998 and published in the March/April 1999 CFIDS Chronicle, the magazine of the CFIDS Association of America. The author is a graduate of the CFIDS Self-Help course. Before becoming disabled with CFIDS in 1993, she had developed a management consulting business following 25 years as a corporate executive.


In a study of the "envelope theory" reported in The CFIDS Chronicle, Fall 1997, the researchers found that individualized treatment programs can help PWCs [People with CFIDS] achieve their optimal level of activity and manage their illness more effectively. "Living inside the envelope" sounds easy, but it hasn't been for me. Seven years I've had CFIDS and only now am I finally, mostly, living inside my envelope. It's been an arduous process of discovery and letting go.


Phase I: Keeping on with my life

When it comes to CFIDS, I am definitely a s-l-o-w learner. From early 1991 I was having increasing symptoms. Despite feeling awful, I continued my busy life. Convinced that exercise must be good for what ailed me, I was still working out five days a week. By mid-1992, though, it was getting harder and harder to carry on. I took more vacation time hoping that would help but without result. Neither daily meditation nor shiatsu massage helped, though the latter felt wonderful.


Phase II: All-out effort to get well

In January 1993, I finally collapsed, unable to stay upright. But did I stop "working"? Oh no; I simply transferred all my drive, determination, and ambition from earning a living to getting well. I tried everything that made sense to me, but made myself sicker in the process. For example, as soon as I had recovered a bit from that first crash, I resumed daily exercise, though I gave up running. I tried "power walking" an hour every day for several weeks until I collapsed again.


Thus began a pattern of exacerbation, forced rest, remission, return to activity, exacerbation, and so on. Between 1993 and 1997, I tried yoga, intensive meditation and visualization exercises, but experienced worse symptoms. I tried homeopathy with no result. I tried eating my main meal at noon and going to bed by 9:00 p.m. with no improvement in sleeping. I tried elimination diets; no change. I tried a macrobiotic diet, and had a bad exacerbation. Anti-depressants brought new and worse symptoms. Sleeping medications and melatonin magnified my sleep disorder.


The only thing that relieved my symptoms was bed-rest, but I couldn't believe I was sick enough to have to stay in bed. Over and over, as soon as I recovered somewhat, I tried to live a normal life. Little by little, though, I was being forced to reduce my activity further. I stopped house-cleaning. Then I stopped cooking. I stopped taking walks and I stopped shopping.


I became convinced that none of the strategies or treatments to which some people with CFIDS attributed their recovery would work for me. Gradually, I was shifting my focus from seeking to learn from others to paying more attention to myself and my own experience. And I stopped striving to recover. Instead, I began to pay more attention to myself and to listen to my body.


Phase III: Learning from my own body and experience

In February 1996 I broke two bones in my foot and was in a cast from my toes to my knee for seven weeks. The combination of heavy cast and lack of the strength immobilized me. Months later, when I was trying to make sense of my records, I realized that I had felt better during and for a few weeks after my immobilization than at any other time for over five years. That's when I decided I was going to find out, by carefully watching myself and keeping systematic records, what I had to do to feel better. Until then I had been recording my symptoms and noting when I felt worse. But in the fall of 1996 I decided to change the emphasis, vowing to identify the conditions associated with feeling better.
 

I began by developing my own definition of a "good" day. A good day for me is one in which I have minimal fatigue, muscle aching, or IBS--my most frequent symptoms; have no other symptoms from my repertoire of twenty-some; do not over-eat, which I'm driven to do by the drained emptiness of fatigue attacks; take a walk; and do artwork.


I also decided to focus on "good nights" as well, since sleep disorder is perhaps my most difficult problem. Lying awake for hours every night is harder to cope with than most other symptoms, it has persisted over time and it exacerbates other symptoms. Over time I discovered that if I stayed in bed, eyes closed and resting, long enough, I could usually get about seven hours of fragmented sleep. And when I got seven hours of sleep, I felt better the following day. I concluded that a good night was one in which I slept at least seven hours total; had refreshing sleep; and could lie awake resting peacefully, not agitated and frustrated. (A meditation practice and an eye pillow help tremendously. Even so, it took months to train myself to lie still while awaiting sleep.)


Good days and good nights are interdependent. After a good night, I'm more likely to have a good day. On days when I stay within my envelope, I'm more likely to have a restful rather than agitated night. Since I dread bad nights even more than bad days, this was a further incentive to discover my limits.


So then I asked, what do I have to do to have good days and good nights? After studying my journal and notes, I concluded that I must spend at least twelve hours a day in bed, resting, meditating, and sleeping; get at least seven hours of sleep; stay at home; restrict my daily activity to personal hygiene, climbing two flights of stairs in our three-story house, and walking about a mile; care for houseplants only when able to; work at the PC no more than an hour at a time; have no visits or long phone conversations; and do artwork.


This is my envelope. Staying inside it, I have the least fatigue and other symptoms and I feel as good as possible. That doesn't mean I don't exceed these limits. I do, and I pay for it.


Phase IV: Developing a feedback system

Having established criteria for good days and nights and having clarified what I need to do to achieve them, I then worked out my record-keeping system. I use a monthly planning calendar with two-inch square blocks for each day on which to indicate the good days and nights. I also note my activities and symptoms each day. Color coding with hi-liters enables me to see readily how I'm doing during the month. I find this kind of visible feedback motivating. I want to do what I have to do to show more violet (good) days and nights.


To see trends over the year, I graph my monthly percentages of good days and nights. On a calendar for the year, I put colored dots to show the days on which I experienced stress--visits, phone conversations, unusual activity, or other exertion. The correlation between clusters of dots on the calendar and the ups and downs of the percentages of good days on the graphs is very apparent. I also chart my sleep pattern daily. I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity.


I also wanted concrete evidence of the effects of staying inside my envelope. Because limiting my life in this way is so very hard for me to do, I had to show myself that it was worth it.


Phase V: Accepting my envelope

Analysis of several years' notes showed me that mental and emotional exertion provoked symptoms as much as physical activity. In fact, I may suffer more symptoms following an hour's conversation than after walking in silence for an hour. It's not that I had never noticed the effects of being around people. It's that this is not a fact I wanted to admit.


For several years, while cutting back on physical activities, I could not accept and acknowledge my intolerance for interacting with people or the physical pain I have after mental exertion. I was not prepared to give up visits, especially with grandchildren, and phone conversations with family and friends. I didn't want to limit my work at the PC. Doing so for the past year, though, has shown me what a difference solitude, silence, and inactivity make in my well-being. Fortunately, my loved ones are supportive. Fortunately, too, and to my surprise, I have found how contented I can be in seclusion.


This is not a prescription for anyone else. It is simply what I have learned about what I need to do to feel better.


Results

So how am I doing? In 1996, a retrospective analysis showed I had 36% good days. In 1997, I aimed for over 50% good days and achieved that. My experience in 1998 has not been as good due to the stress associated with my Social Security Disability Insurance claim (which was finally granted almost three years after my initial application) and a major relocation from our home to a retirement community--a great change in living situation. Nevertheless, I have had three months this year of better than 70% good days, so I know what's possible.


My records for the past three years assure me that I am finally doing what I have to do to accommodate CFIDS. More importantly, during this period, I have had eight separate months with over 60% good days and I can account for the bad months. I know what I did or what happened that exacerbated my symptoms.


I've also learned that it is possible, by staying inside my envelope consistently for weeks at a time, not only to have no crashes, but to have exceptionally good days when I feel almost well. I've achieved more stability; I'm less victimized by the turmoil of the exacerbation-remission roller coaster.


Summary and Conclusions

In summary, I have established my own criteria for assessing my days (and nights, because nights are so problematic for me) so that I could identify good ones. I clarified what I have to do to have good days and nights. In other words, I described my envelope. I developed a record-keeping system (calendars, graphs, and charts) that help motivate me to stay inside my envelope. As a result, I am feeling much better and I am living with CFIDS much better.


As I review my story, I ask "Why could I not see for so long and accept what I had to do?" I think it's because it was so hard to make feeling good my top priority. Believing I should just soldier on no matter how I suffered, I was not able to insist on what I needed to make me feel better. I was not willing to make the changes, to give up so much that was dear to me and central to my self-image. I wanted and was determined to continue my normal life when CFIDS was insistently demanding that I live differently.


To feel good, I have to be so unlike myself: self-indulgent, irresponsible, lazy. It seems clear to me now that living "normally" is not good for me, but I also know that I can live well with CFIDS in body, mind and spirit.


[Updating her situation in 2006, she wrote, "I have adapted to CFS. It's been many years since I've been as sick as I was early on." Mentioning that she had experimented with a variety of treatments over the years, she added, "the only things that make me feel better and keep me relatively stabilized and able to achieve my priorities are scheduled rest and pacing."]


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