No matter how consistently I lived within my envelope in the first two years I was ill, I would periodically find myself back in bed with symptoms that were so intense that I couldn't do anything but pull the shades, climb into bed, and wait for a better day. These relapses, which usually lasted from one to three days, were greatly demoralizing as well as painful, mocking my attempts to gain some control and filling me with the worry that I would slide permanently downhill and become bedridden.
Relapses represented perhaps the greatest psychological challenge I faced from CFS. They were so frequent and so devastating that I decided that I had to develop strategies to combat them.
The first challenge was to determine what I could do to reduce the length and severity of my relapses. The number one answer was to rest. Staying in bed until I felt better was the quickest and surest was to improve. Stating that obvious truth to myself was helpful because it gave me permission to acknowledge that at times I was powerless over my illness and the best strategy was to give in to it.
I also found that what I told myself during a relapse was important. Lying in bed for hours on end, many negative thoughts would swirl through my head, things like "you'll never get better" or "you have no control over your illness." Two strategies that were helpful at these times were to speak reassuringly to myself and to connect with other people. Knowing that worry made relapses worse and that relaxing helped me recover, I spoke consolingly to myself, saying things like "you've recovered from all the other relapses, so just relax" or "you've been doing well lately, this is just a temporary interruption of your progress." And I reasoned with myself, saying things like "all your previous setbacks have responded to rest, so this one will probably end too."
I also found talking to other people on the phone helpful. We didn't even have to talk about my relapse or even about me; just having a sense of connection with another person was reassuring. Also, listening to someone else talk about themselves distracted me from my symptoms and worries.
I observed that often a relapse would have two parts. After resting for a day or two, I would feel somewhat better, but then the relapse would resume. Either I was too eager to return to my normal activity level or my body was giving me misleading signals about my recovery. In any case, the strategy I developed to avoid a double dip was to return to normal gradually rather than as soon as my symptoms disappeared. If I took more than my usual amount of rest for a day or two after I thought I was OK, I could avoid slipping back into a relapse. I motivated myself to take the extra rest by visualizing what I would feel like if I didn't take the extra rest.
Taking extra rest was also useful for less severe setbacks, ones in which my symptoms were higher than normal but not so severe that I was forced to go to bed. My longest setback occurred two years after I became sick, when I had gum surgery. I recovered partially in a week or so, but was left with a higher level of symptoms than before the surgery. My symptoms were unusually strong even three weeks after the surgery, so I doubled my usual amount of rest, then tripled it, finally getting up to six times my usual amount: three hours a day in bed. After only two days of three hours rest a day, my symptoms returned to their pre-surgery level. The experience taught me that often the most useful action I could take to control symptoms was to have additional rest, increasing it incrementally until I found an amount that enabled me to reduce symptoms.
Another strategy I used to minimize relapses was to give in as soon as the first symptoms appeared rather than trying to push through them. By doing this, I found I could stop a minor relapse in its tracks. I stumbled upon this strategy one day when I was cooking chili. After standing at the stove for 45 minutes, I suddenly felt tired and lightheaded. My first thought was: "If I can just work for another 10 minutes, I can finish this and then go rest." But, remembering how many times such an approach had led to several hours' rest, I decided to turn off the heat under the chili and lie down. After about 15 minutes, I felt OK and returned to finish the cooking. I needed no more rest during the remainder of the day. I was able to use this strategy many times, especially in combination with meditation. When I felt increased brain fog, for example, I found I could eliminate it if I could lie down and get into a deep relaxation for five or ten minutes.
Finding ways to reduce the length and severity of setbacks was good, but I also wanted to know what could I do to prevent them. I decided that to gain control over my setbacks, I would assume that I caused all of them. This was a high standard, especially because one of the hallmarks of chronic illness is symptoms that wax and wane for no known reason. But I wanted to hold myself accountable. Perhaps part of the reason for this approach was that believing I was responsible also enabled me to believe I could gain control. This assumption led to many helpful discoveries. By avoiding those things that created relapses, I was able to smooth out my life considerably, reducing both the frequency and severity of relapses, and eventually eliminating them. Believing I caused my relapses gave me hope that if I could change how I lived, I could bring setbacks under my control.
I explained in the chapter on record keeping how I used my logs to identify the two most frequent causes of my relapses (secondary illnesses and travel), and then developed strategies to prevent future setbacks. By taking extra rest for several days after the symptoms of a secondary illness had ended, I eliminated relapses triggered by colds and other short-term illnesses. I used several strategies to minimize travel-related setbacks. First, I limited my travel to destinations that were only a few hours driving distance from home. Second, I scheduled extra rest before, during and after my trips. Third, I added a ten to 15 minute rest stop for every two hours of driving.
Initially I resented having to give in to my illness so much, but then I told myself that by giving in a little I could have a good trip. Being two-thirds as active as a healthy person was much better than spending my whole vacation in bed, which had happened on a number of trips before I adopted these strategies.
Another travel-related strategy was to plan my trips in great detail, especially how much activity I would have. Making a commitment to myself to stay within a safe activity level helped me resist the temptation to do too much when on the road. Also, I told my travel companions of my limits ahead of time and they helped me honor my plans.
Lastly, when something was very important to me, I adopted a compromise between strict adherence to my envelope and ignoring it completely. I found that if I went somewhat, but not greatly, outside my envelope, I would increase my symptoms to some degree, but didn't suffer a bad flare-up.
A final strategy I developed to prevent relapses was what I called personal guidelines. I remember well the day the idea came to me. I was unusually fatigued and felt confused about what I should do. I said to myself that what I needed was a few simple rules to follow, some things I could write on a 3 x 5 card, which could guide my daily life and be my reference in times of confusion. Here's what I came up with (the words in italics went on my 3 x 5 card, the full text on an 8.5 x 11 sheet of paper):
Live within my energy envelope: I believe I can reduce symptoms and lead a more predictable life by living within the limits imposed by the disease. This strategy includes: a) taking scheduled rests daily no matter how good I feel; b) keeping daily records of activities and symptoms to help me define my limits and to hold myself accountable for staying within them; c) returning only gradually to my normal routine after a relapse or illness; d) avoiding stressors (people and situations that trigger strong reactions).
Extend the envelope gradually: I will take prudent risks to expand my activity level. "Prudent" means 5% to 10% more at a time. I recognize that not all my experiments will work, and I acknowledge that this approach takes patience. The illness is in control and dictates the timetable and amount of improvement.
When all else fails, go to bed: There are times when the best course is to surrender to the illness. This guideline gives me permission to acknowledge that at times I am powerless over the disease and the smartest course is to give in to it.
Accept that I may not recover: I believe I can create the conditions for recovery but can't control whether I recover. Thus, I try to focus on feeling better, which I believe is under my control to some degree.
(For other examples of guidelines, see the article "Personal Guidelines for Managing Chronic Illness.")
Gaining (Partial) Control
Gaining control over relapses was a big psychological achievement. Eliminating setbacks gave me a belief that I could make my life predictable. I am sure that the reduction in stress that resulted helped create a positive spiral: gaining more control reduced my worry which in turn lessened my symptoms, deepening my sense of control.
I never felt that my control over CFS was complete. I knew that ultimately the illness was in charge and dictated how much improvement was possible. But it was empowering to see my life improve when I discovered and learned to play by the rules that illness had imposed on me.
(For more on relapses, see the chapter Minimizing Relapses in The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia.)