Living With CFIDS
Living within my envelope: A how-to story

By JoWynn Johns

In a study of the "envelope theory" reported in The CFIDS Chronicle, Fall 1997, the researchers found that individualized treatment programs can help PWCs 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.
 
The point of this story is not what I learned but how I learned it. CFIDS is such an idiosyncratic condition that many of us find no help in what works for others and must discover or create strategies for ourselves. That's what I have done.

Phase 1: Keeping on with my life 
When it comes to CFIDS, I am definitely a slow learner. From early 1991 I was having increasing symptoms. Since my doctor and a psychotherapist could find no cause for them and since none of the medications we tried relieved them, I concluded I would just have to live with them. 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; and I began a daily meditation practice, also to no avail in relieving symptoms. Neither did shiatsu massage help, though it felt wonderful.

Phase 2: All-out effort to get well 
In January 1993, on the edge of hysteria every day from the effort to keep going, I finally collapsed, unable to stay upright. I have been unable to work ever since. But did I stop "working"? Oh, no. I simply transferred all my drive, determination and ambition from earning a living to getting over whatever was wrong with me. I felt it was my obligation to get well. Reading everything I could find about health, fatigue, and stress, I tried every recommendation that made sense to me, making myself sicker in the process.
 
As soon as I had recovered a bit from that first crash, I resumed daily exercise, but I switched from running to power-walking five miles in an hour every day for several weeks until I collapsed again.
 
Thus began a pattern, familiar to many of us, of exacerbation, forced rest, remission, return to activity, exacerbation, and so on. Between 1993 and 1997, I tried yoga to relieve muscle pain and had worse symptoms. I tried intensive meditation and visualization exercises and had 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, which required three hours a day of food preparation, and had a bad exacerbation. Anti-depressants brought new and worse symptoms. Sleeping medications and melatonin magnified my sleep disorder. Megadoses of nutritional supplements (120 "pills" a day) depleted our savings and had no effect on my symptoms. Fludrocortisone with increased salt and water after a positive tilt table test made no difference. Every attempt at regular exercise, however moderate, intensified my fatigue and pain.
 
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 cleaning the house. Then I stopped cooking. I stopped taking walks and I stopped shopping. Although it hadn't yet dawned on me what I really needed to do, I was becoming convinced that I wasn't going to get well and that none of the strategies or treatments to which some people with CFIDS attributed their recovery could be expected to 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.
 
Gradually, I stopped striving to recover. Surrendering to my situation, I gave up the get-well project I had so effortfully pursued. Instead, I began to pay more attention to myself and to listen to my body.

Phase 3: Learning from my own body and experience 
From the beginning I'd kept notes about what was happening to me-I've kept a journal for more than 30 years-but there was nothing systematic about my record keeping, and reviewing my notes hadn't shed much light on what was wrong with me. The effects of physical activity and medications had finally become apparent; other correlations weren't as clear. At least, I wasn't ready to see them.
 
Then 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 required to get around on crutches immobilized me. Instead of studying, writing at the computer or sitting in meditation posture, I lay with my leg elevated, watching video films rented by mail and finishing a needlework project begun almost 20 years earlier.
 
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'm going to find out, by carefully watching myself and keeping systematic records, what I have to do to feel better. Not to get well, but to feel as good as possible.
 
Until then, I had been recording my symptoms and noting when I felt worse. In the fall of 1996 I decided to change the emphasis and become more aware of feeling good. I wanted to identify the conditions associated with feeling better.
 
Looking for something less vague than fatigue (for me), some more observable signs to measure, I developed my own definition of a "good" day. A good day is one in which I:

• Have minimal fatigue, muscle aching, or irritable bowel syndrome-my most frequent symptoms.
• Have no other symptoms from my repertoire of 20-some.
• Do not over-eat, which I'm driven to do by the drained emptiness of fatigue attacks.
• Take a walk.
• Do artwork.

Sleep disorder is perhaps my most difficult problem. Lying awake for hours every night is harder to cope with than most other symptoms, especially since I'm less able then to ignore pain, discomfort and distress. Moreover, unlike other symptoms, sleeplessness persists, no matter what I try, and sleeplessness exacerbates other symptoms. So I made a second decision to focus on good nights as well as good days. 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.
 
A good night, then, is one in which I:

• Sleep at least seven hours total.
• Have refreshing sleep.
• Lie awake peacefully resting, 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.
• Work at the computer no more than an hour at a time.
• Have no visits or long phone conversations.
• 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 4: 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 5: Accepting my envelope 
What my analysis of several years' notes showed was that mental and emotional exertion did in fact provoke 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, to own. 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 computer. 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 our 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 also 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.
 
In my new environment, I plan to test the limits of physical activity by gradually extending my daily walk. I plan to maintain, as far as possible, my solitude and silence. I'd like to be able to have twelve 70% months.

Summary and conclusions 
What I've learned about my envelope and what I have to do to minimize symptoms is unique to me. It may not be relevant for anyone else. How I learned and came to accept my limits, the process I followed, may be of use to others.
 
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.
• I regularly review my records, see what changes I need to make to achieve my objectives, and celebrate my achievements.

There is no evidence that I am getting better, but I am feeling much better and I am living with CFIDS much better.
 
As I review my story, two themes become apparent to me. The first is the how-to-how I developed a way of living inside my envelope, the process of discovery and letting go.
 
The second theme has to do with what made it so hard-such a long, slow process. Why could I not see and accept what I had to do? I think it's because of the following reasons. I could not make feeling good my top priority. I felt that since I couldn't get well by changing my life, 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.
 
I can feel good physically by doing what makes me feel bad about myself-shirking my roles and responsibilities, not working, not being involved with my grandchildren, not going places and doing things I enjoy. I can feel good psychologically by doing what I want to do, what reinforces my self-image. I can't have both. Maybe some treatment or medication could make that possible. I wonder, though, whether I should drug myself so I can keep doing what makes my body so troubled. Is my body's reaction a message to me about my self-image? Maybe I ignore that, or try to ignore that, to my own detriment.
 
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.

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.