4. Using Multiple Strategies
Having settled on using self-help, I asked myself: where should I begin? I decided to start by developing a set of strategies to deal with my most persistent and disruptive symptom: fatigue.
From my work at Stanford, I knew that fatigue could have multiple causes, each of which might be addressed by one or more different strategies. I identified eight possible causes for my fatigue besides my illness.
|Being active beyond my limits
|De-conditioning from having a lower activity level
|Sleep was not restorative, leaving me feeling tired
|Pain can lead to muscle tension, which is fatiguing
|Stress produces worry and muscle tension
|Low spirits produce a sense of listlessness
|Lose energy if don’t get enough food or lack right foods
|Drugs can cause fatigue as a side effect
Activity level seemed the most crucial, because there was an obvious relationship between the number of hours a day I was active and my fatigue, though the effects were sometimes delayed a day or two. If I was active for more than about four hours a day, I later experienced elevated fatigue. Rest produced a reduction in my exhaustion. Ironically, I found hope in this push and crash pattern. If the connection between activity and fatigue was so direct, then I might be able to gain some control if I found a level of activity that my body could tolerate.
As I’ll explain in upcoming chapters, finding my limits, adjusting my life to live within those limits, and expanding my limits very gradually using experimentation became the heart of my self-management plan.
The other factor that seemed especially promising was inactivity. I knew that highly-trained athletes become deconditioned if they stop exercising for even a brief time, so I was sure that part of my fatigue was due to my lower activity level. If my aerobic capacity had diminished, then I would become fatigued more easily by activity. I thought the way to fight this was through exercise. But how much? If I strayed outside my limits, I would intensify my symptoms.
My solution was to experiment to find the length and intensity of exercise that would produce an aerobic workout without increasing my symptoms either during my workout or later. Initially, that level was about 20 minutes of walking a day at a pace that raised my heart rate to 90 to 95 beats per minute. I found that by staying within those limits I could recondition myself to some degree, thereby reducing inactivity as a source of fatigue. (See chapter 11 for more on my experiments with exercise.)
Improving my sleep also seemed worth pursuing. I knew that sleep is often nonrestorative for people with CFS, but I thought I could help myself to some degree by maintaining good sleep-related habits. My reasoning was that even if CFS was the major reason for nonrestorative sleep, I could probably reduce my morning sluggishness if I maintained regular hours and avoided things like late nights on the computer. So I made it a rule have a wind down period before going to bed, starting at 9 pm by turning off the TV and my computer.
The final factor that I thought might be affecting my fatigue was pain. To the extent that I responded to pain by tensing up, I might increase my fatigue. Using relaxation was helpful, as described chapter 9 on my use of rest.
Stress & Emotions
In the first year or so, I focused my efforts on the areas described above. What about stress? Didn’t I say earlier that stress management was the second most important key to my recovery? True, but it took me some time to recognize the effects that stress, and also emotions, had on my symptoms. When I recognized their effects, I adopted strategies that addressed both of them, seeing them as two more areas providing opportunities to reduce my symptoms.
Poor Nutrition & Medications
I assumed that the final two factors on my list of possible causes of fatigue didn’t apply to me. Since I had decided not to take medications, I was not worried about fatigue due to drugs. And I thought my nutrition was probably adequate, because I had eaten a low-fat, mostly vegetarian diet for many years and I hadn’t experienced intestinal symptoms. I didn’t rule out looking at my diet, but I decided to focus my initial efforts elsewhere.
Should I Use Additional Strategies for Other Symptoms?
In thinking about fatigue, I had discovered an important principle that I was able to use many times. Because a symptom can have multiple causes, it is often helpful to use multiple strategies in response.
Once I developed my approach for addressing fatigue, I asked myself whether I needed additional strategies for my other major symptoms, unrefreshing sleep and pain. I recognized that sometimes a person is prescribed more than one medication if he has multiple symptoms, so I wondered whether I needed separate strategies for brain fog and pain.
After observing the effects of my efforts to control fatigue, I concluded that all three symptoms (fatigue, poor sleep and pain) were responsive to the same strategies, so that, by and large, I didn’t need separate strategies for each symptom. As I’ll describe below, taking regular rests, limiting my activity level, and reducing the stress in my life worked on all three symptoms and also seemed to improve my mood as well. Just as important, I came to see the presence of any of my symptoms as a sign that I needed to cut back. For example, if I felt cranky or depressed, I took it as a sign I had gone outside my limits and needed to rest.
The interactions between symptoms and emotions proved to be another fruitful area to explore. I’ll give a couple of examples here and more in chapter 15, which focuses on emotions. Although it took me a while to recognize, I eventually saw a relationship between worry and my symptoms. I noticed that if I reacted to an increase in symptoms by feeling anxious, that reaction would make the symptoms even worse.
I dealt with this vicious spiral in several ways. Probably the most helpful was the combination of rest and meditation. Just lying down helped me to calm down. Beyond that, however, doing a meditation procedure during my rests helped even more. I developed a technique that involved focusing on my breathing.
I also discovered the power of self-talk to reduce symptoms. I found that if I experienced anxiety, I could calm myself down with reassuring words. When an intensification of symptoms led to thoughts like “I bet this is a big relapse starting” or “I’ll never get any better,” I countered with phrases like “Remember how things always look worse when your symptoms are bad” or “Think about how you’ve improved in the last six months.”
I was surprised to find that the relationship between emotions and symptoms applied even to positive emotions. I remember a time when I was moved to tears by the positive comments about the course from people in one of our early self-help groups. I was confused by my response, which was a combination of joy and brain fog. The fog dissipated gradually over a period of about half an hour. That experience helped me to realize that any experience, whether positive or negative, that produced adrenaline would trigger brain fog. The same principle applied in situations that made me anxious: any experience to which my body responded caused muddled thinking.
I have to admit that sometimes I wished for a simple solution, a single pill to take rather than the behavioral approach, which involved the use of many strategies. But I decided that I needed multiple strategies because I had several symptoms, my symptoms had several causes, and CFS affected so many parts of my life. From that perspective, my challenge was to understand all the inter-relationships and to find those strategies that produced the greatest effect on my symptoms.