12. Minimizing Relapses

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 close 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 a separate set of strategies to combat them.

Minimizing Setbacks

The first challenge was to determine what I could do to reduce the length and severity of my relapses. The #1 answer was to get lots of 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.”

Knowing that worry made relapses worse and that relaxing helped me recover, I spoke reassuringly to myself, saying things like “you’ve recovered from all your 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 it was helpful to talk to other people on the phone. 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.

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 resting three hours 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 then I remembered how many times such an approach had led to several hours’ rest in the past, and 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.

Preventing Relapses

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.

At the end of 1998, I reviewed my records for the year and found eight relapses. (I defined a relapse as a period in which my symptoms were so severe that I had to spend at least one full day in bed.) Looking for common causes, I discovered that almost all the relapses were associated with either having another illness or travel. I then developed strategies to prevent future setbacks.

To combat relapses triggered by secondary illnesses, I decided to take two days of extra rest after the symptoms of the secondary illness ended before returning to my normal activity level.

To minimize travel-related setbacks, I limited travel to a few hours’ driving distance from home, doubled my regular daily rest periods for a few days before a trip, took two or three times as much rest as usual while away, planned for extra rest after returning home, and took a 10- to 15-minute rest for each two hours of driving.

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.

I haven’t had a relapse (defined as being forced to spend at least one day in bed) since. I think the two hours I spent analyzing my logs and planning how to handle secondary illnesses and travel differently, was the most productive use of time in my experience with CFS.

Personal Guidelines

A final strategy I developed to prevent relapses was what I called personal guidelines. The idea came to me one day when 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 to guide my daily life and be my reference in times of confusion. Here’s the result, which I found immensely helpful:

1) 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 if I:

  • a) Take scheduled rests daily no matter how good I feel
  • b) Keep daily records of activities and symptoms
  • c) Return only gradually to my normal routine after a relapse or illness
  • d) Avoid stressors (people and situations that trigger strong reactions).

2) Extend the Envelope Gradually
I will take prudent risks to expand my activity level in small increments, but return to my previous level if symptoms are increased.

3) When All Else Fails, Go to Bed
There are times when the best course is to surrender to the illness.

Gaining 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.

It was empowering to see my life improve when I discovered and learned to play by the rules that CFS had imposed on me.