"I have a choice. Either I listen to the signs that my body gives me, however minor they might seem, or I don't. The longer I don't listen, the higher the likelihood of ending up with a full blown relapse."  

-- Adriana

A PRIMER ON STRESS AND COPING 
     Imagine you are walking across the floor in your room. As you walk, notice how each step is a process of maintaining balance. You keep yourself balanced from front to back, as well as from side to side, and this comes so automatically you usually don't think much about it. 
     Now imagine that you are carrying a heavy suitcase in one hand. This tends to pull you off balance, and you have to lean your body in the opposite direction to maintain balance. The weight is pulling on your arm and shoulder, and strain develops in your muscles. You have to alter your pattern of walking to accommodate these effects. In order to keep your balance across the room you have to compensate for the suitcase. 
     In this example, the suitcase represents what we could call a "stressor" (a cause of stress), and your efforts to compensate represent "coping." While walking with no suitcase there was no stressor, and no special effort was required to maintain balance, so no coping was required. 
     All the symptoms of CFS are stressors. The syndrome causes imbalance in all areas of life, including your emotions, all your bodily systems, your relationships, your patterns of work, play, and rest; and your self-concept. Some of the symptoms are successfully treated by medication and some are not. Some can be helped by behavior strategies, and others cannot. 
     You need to know what you can do to reduce symptoms. But what about when nothing works? You also need to know how to maintain a sense of inner peace or balance when there is no solution that really changes the symptom. 
     As a result, psychologists speak of two kinds of coping. The first is what you do to change the problem, in this case the symptom. The second is what you do to handle your emotional reactions to the problem, such as the frustrations, fears, or feelings of helplessness about the symptom. 
     Leaning away from the suitcase is an example of responding to the problem itself, what is called "problem-focused" coping. You could also just set the suitcase down and refuse to carry it. You may choose to hire someone to carry it for you. Or you might empty some of the contents of the suitcase and make a couple of trips. These are all strategies to handle the situation, reducing the stress it causes. 
     However, you may not always be able to change the situation. If you are carrying your suitcase to the bus stop and can't afford to miss your bus, you may have to go on carrying it and endure the stress. In other words, you handle the stress not by changing the situation, but by changing your inner experience of it. You may tell yourself that you only have a few feet to go, you'll be able to rest once you get there, and it will be worth the effort because your rich uncle is meeting you at the other end of the trip. 
     This inner dialogue or understanding helps you cope with the stress by maintaining a sense of equilibrium on an emotional level. This is what we mean by "emotion-focused" coping. You have changed your perspective on the symptom. You have changed its meaning. Then, rather than going into anger, despair, or frustration, you go through the experience relatively peacefully. 
     Very often, people with CFS try to put all their effort into problem-focused coping. They spend a great deal of energy searching for external solutions, medical breakthroughs, or promising new treatments. However, since many symptoms do not have effective solutions, this relentless quest can lead to a great deal of frustration, depletion of energy, and a sense of hopelessness. There needs to be a balance between your outer efforts to resolve the symptoms, and your inner efforts to have a sense of emotional well-being, harmony, and balance. 
     Below we will look at the major types of symptoms of CFS, and alternative ways to cope with them. You will see that both emotion-focused and problem-focused strategies can be essential at different times. 

FATIGUE 
     In managing the fatigue, it helps if you can be familiar with your own cycles and patterns. These may or may not be obvious to you. One way to establish them is to keep a log of your energy levels: first for the hours of the day, and second, your broader patterns over several days and weeks. You might simply use a scale from one to ten as a way of recording energy levels and seeing patterns. 
     By watching your patterns, you may see that at times the fatigue is connected to an activity where some exertion took place. Or you may find it affected by where you are in your menstrual cycle. At other times, the fatigue may seem to come out of the blue, even when you have been taking excellent care of yourself. Such is the cyclical and sometimes unpredictable nature of the syndrome. But in general, you should discover that there is a somewhat predictable pattern of relative highs and relative lows over time. 
     Once you get a good sense of your patterns, you can begin working with them. There are some "do's" and "don'ts" to this. The biggest "don't" is to not challenge your limits. Respect your body's cycles. 
 On your good days, you must respect the fact that your body remains vulnerable. You must learn to pace yourself. Yet, as you a probably aware, there is a tremendous temptation to test limits and overdo on the good days. After all, you might think, "I don't know how long this high is going to last, and I've got so much I want to do while I have the chance. I'd like to wash the car, go shopping, go to a movie, clean the carpet, vacuum the draperies, clean out the refrigerator, mow the lawn, go to the beach..." And then, of course, you crash. 

The Fifty Percent Solution 
     Virtually every person I have known with CFS can relate to this experience. I have, however, found an effective way to work with energy patterns rather than against them. I call it "the fifty percent solution," and it has proven very helpful for many patients. It goes as follows: When you find yourself on a good day or in a period of remission, make an assessment of how much you feel you can do. For example, though up to now you have been able to exercise only very little, you may feel confident that you can walk a half mile with no problem. Following this method, you would walk a quarter mile, and then stop. Then for the next day or two, you very closely observe the impact this has had on your body. 
     If you relapse, your assessment must be adjusted downward on your next good day. If you feel fine, you may repeat this process a few times, each time limiting yourself to fifty percent of what you feel capable of doing. As your confidence grows, you may feel capable of walking a mile, in which case you would try a half mile, followed again by a close monitoring of your body's responses. Never take the attitude of challenging your limits.  The essence of the fifty percent solution is that you are spending half the energy you feel is available, and you are investing the other half in your body's healing process. It takes energy to heal. Energy that is spent outwardly is not available inwardly to energize your healing process. You are investing in a savings program that collects interest. Let your wealth grow, rather than spending every penny you find in your pocket. 
     It takes some self discipline to hold back in this way.  But, to borrow a phrase from the field of psychiatry, a "flight into health" is often followed by a relapse. The strengthening of your resistance takes time and patience. 
     As you move further toward recovery, your assessment of your available energy will gradually rise. As you continue observing the fifty percent solution on your good days, you will discover that your periods of remission lengthen, and that the severity of your relapses gradually diminishes. 
     Recovery demands that you tune in to your body and truly respect the need to pace yourself. The fifty percent solution has served as a useful guideline for many along the road to healing. 

Meditation and Relaxation 
     Beyond the fifty percent solution and metering out your energy, some patients find meditation as a help with fatigue. The restorative power of meditation is that it lowers neurological arousal, and it leads to the relaxation response. As Harold reports, "I would meditate once a day in the afternoon, about half an hour to 45 minutes, as a calming device. That would tend to take some of the fatigue and muscle shakes away." 
     Why does this work? If we accept that the fatigue and muscle shakes are symptoms arising from immune hyperactivation, then something about the meditation must be having a moderating effect on Harold's immune system. This is consistent with the research about the relaxation response discussed earlier. The relaxation response has a harmonizing and rebalancing effect on the immune system, and meditation is a direct path to this healing state. This will be covered in more detail in Chapter 8. 

HANDLING COGNITIVE SYMPTOMS 
     CFS is very much, perhaps primarily, a neurological condition. It results in disturbed cognition--that is, difficulties in thinking. This can take the form of problems with memory, problem solving, forgetfulness, mental confusion, concentration, finding words, and a wide range of other signs of impaired mental functioning. An overall strategy for handling this array of symptoms is two-fold. 
     First is to have a realistic perspective on what is happening. Remind yourself that you are experiencing symptoms and that you are not crazy. Remember that symptoms are transitory. Having a regular dialogue with your inner child may be very helpful for reinforcing this awareness (discussed in Chapter 11). Second, use strategies that help you compensate for the symptoms. 
     Following are some examples of how people have coped with the cognitive dysfunction. 
     Harold, a high school math teacher, shows us a good example of using self-talk to maintain perspective. He states: "I developed an inability to read or do any kind of figuring. I couldn't even write a check, add or subtract. It was demoralizing. At first I thought `I'm so stupid, what's wrong with me?' But then I realized, `No, this is not my fault, it's just another part of the disease,' and so I could cope with it. I learned to take a lot more notes, not to write checks, and not to try reading things I couldn't comprehend." 
     Joanne, a management consultant, also discovered the benefits of talking to herself: "In my work I usually had to juggle a lot of things at once. With CFS I had to start writing everything down. At first I resented it, because I was used to having such a good memory. The other thing I had to do was talk to myself out loud, which would help me remember what I was doing. I would also read out loud to help retain what I was reading." 
     Mark, a physician, tells of how he handled the problem of forgetting patients' names: "I started taking photographs of them. New patients would come in and we'd just take a picture and put it in their chart. I'd remember their situation better by looking at the picture than by their name..." 
     Here are some other ways of handling cognitive symptoms: 

• Become an expert list maker. Make a list each morning of what you need to do that day. Make other lists to keep track of tasks, appointments, etc.
• Use time schedules and calendars to keep track of your activities each day.
• Wear a watch that beeps on the hour if you need help keeping track of time.
• Use lots of "post-its" around your home or workplace to help you keep track of things you need to remember.
• Use repetition: when being told new information, repeat it to yourself several times to help lay down the memory.
• Write notes to yourself, and take notes when having important conversations with people.
• Before you call someone, make a note to yourself about who you are calling and what you need to say.
• Keep calculators handy.
• Play board games or use other activities to stimulate your mind and keep it active.
• Practice speaking more slowly, not being in a hurry to choose your words.
• When driving, try to have someone with you who can serve as a backseat driver.

• Acrostics: creating sentences with words that all begin with the same letter ("Make mail Monday morning")
• Acronyms: making a word out of the first letter of several words ("RAMBO--Remember Afternoon Medication B12 Oral")

EMOTIONAL DISTURBANCE 
     There are two distinct sources of emotional disturbance in CFS. One is the "somato-psychic" aspect of CFS--the fact that the disease process affects your neurological system, altering your brain chemistry and, consequently your emotions. The other source of distress is the psychological experience of having to adjust to life with a chronic illness. It is impossible to say how much of the emotional disturbance in one individual is attributable to the disease process, and how much is their psychological reaction to it. And of course, the two can feed on each other--as in "I'm depressed about being depressed." 
     The most common emotional symptoms are anxiety, panic attacks, depression, mood swings, shortness of breath; and personality changes, such as increased volatility, emotional sensitivity, or emotional withdrawal. 

Expressing Feelings 
     What are the keys to handling these kinds of disturbance? The most fundamental answer is expressing your feelings. This of course can be done in several ways, such as: 

• Talk about your feelings with a confidant or in a support group.
• Talk with yourself in private, letting all your inner voices be heard.
• Cry or use other means of nonverbal expression.
• Draw images that express how you feel.
• Write about your feelings in a journal.

Breathing 
     Another key to maintaining emotional equilibrium is conscious breathing. This is of particular importance in CFS since shallow breathing will exacerbate your emotional upset and contribute to anxiety or panic attacks. 
     Full abdominal breathing will dramatically change your emotional experience. More energy will be available in your body. Tension will be more easily released. The body will sense that there is ample energy available. It will not go into feelings of anxiety that occur naturally when it is deprived of adequate oxygen. We will explore breathing further in Chapter 10. 

Handling Anxiety or Panic Attacks 
      I like to emphasize that although anxiety attacks are a symptom of CFS, you can empower yourself to control or prevent them. I have heard many patients report that they had no idea how shallow their breathing was, and that in their anxiety or panic attacks, they realized they had stopped breathing and were literally holding their breath. 
      One of my patients, Gail, found that breathing made the difference in her controlling anxiety attacks. "It took a lot of practice, but I learned that when I felt one coming on, I could consciously start taking deep breaths. Sometimes I would conjure up an image that helped me relax, and the breathing and imagery together really helped. I also used relaxing music, and eventually I found I would have the attacks less frequently. I got hooked on relaxation." 
      Another patients, Sharon, reported: "I didn't have a lot of panic attacks, but the few that I had were very scary. Most were when I was a passenger in a car. I handled them by closing my eyes so that I couldn't see anything around me. I just trusted the fact that we would get to wherever we were going. I was able to talk about what was happening. I'd tell my husband `I'm very anxious right now, I'm panicky, I'm frightened. I understand what's happening. I'm going to close my eyes and relax and breathe.' I was relieved to find out that this was not an isolated symptom for me, but was something that other people were experiencing too, and it was all part of the syndrome." 
      In coping with the emotional symptoms it is very important to remind yourself that you are not crazy, and that this is a symptom of your illness. As with the cognitive disturbances, having a dialogue with your inner child will help soften the fears. It may also be helpful for you and loved ones to enter into counseling with a professional who is informed about CFS and can help you all communicate and express more openly. 

Suicidal Thoughts and Feelings 
      Not surprisingly, when suicidal thoughts or feelings arise, the most helpful thing you can do is express them. Preferably, there is another person with whom you can share this, but if not, at least write about these feelings in a journal. The simple act of putting these feelings into words, while not completely eliminating the feelings, will bring about some relief. 
      Through such expression, some of the emotional charge will be released and it will be easier to put the feelings into perspective as the transitory symptom that they are. This is a time when interpersonal support is especially important. Ask for physical contact and the moral support you need from those who care about you. If suicidal feelings or ideas persist, then you should talk them over with a professional therapist who is informed about CFS. Beyond that you may need to consult your physician to consider medication to help you through this crisis. 
      If you can remind yourself that the suicidal thoughts or feelings are transitory and symptomatic of the illness, this will help you get through those times when you are in the bottom of the pits and can't see any way out. Also, talking about your feelings with a confidant or loved one can help immeasurably. 
      Consider Laurel's example: "I thought about suicide. I was getting a divorce, and everything was going wrong--my health, my business, my finances--and I didn't think I'd ever get well. I thought, `What good is life if I can't provide for myself? Even if someone takes care of me, why lie around in a body like this, sick, lonely, and unable to think of a way out?' I didn't try it, but suicide was very attractive to me. The most positive step I took was to open up to my friend about it. We talked on the phone several times a week, and we invited God in to participate in a healing process. This was the beginning of my recovery." 

SLEEP DISTURBANCE 
      As stated earlier, the sleep disturbance is in a sense the most important symptom to manage. This is because in order for the body's self-repair mechanisms to function, quality rest is needed. The sleep disturbance can be either an inability to sleep (insomnia) or inability to stay awake (hypersomnia). Fortunately, many patients have been helped with very low doses of anticonvulsant or antidepressant medication (much lower than would be used to treat psychiatric depression). 
      One common problem is that patterns or cycles of sleep may vary. In this case, you should gently try to accommodate the body's preferred sleep pattern rather than trying to force it to follow a certain schedule. Sleep when it is easiest, even though this may be at less conventional times. 
      A wide variety of other strategies have been used with varying success by different people. They range all the way from drinking water or herbal tea before bed, to experimenting with various foods which may help you relax and sleep, taking a warm bath, and simply reading. Through trial and error, you can develop your own unique routine, almost like a ritual, of what works for you. 
      Enrolling the support of family or loved ones can be a real help, as described by Delores: "My family protects my sleep. I can't get up at 6 in the morning. It makes my day too long. My husband has been wonderful about it. He gets the kids off to school quietly, and then I wake up on my own when my body's ready to. If I wake up by an alarm, my body gets very upset--it's that delicate. Also, we turn off the phone every night." 
      Finding ways to shut off the mind in order to sleep is difficult for many people with CFS. Because of the neurological arousal and agitation caused by the syndrome, even though the body is exhausted, the mind may keep on going and keep you awake. 
      One of the most helpful things you can do is to practice meditation and deep relaxation techniques (see Chapter 8). This will help to calm the mind and reduce the degree of neurological arousal. It may not calm it completely, but at least it will reduce the portion of agitation or arousal caused by the worry and anxiety of not being able to sleep well. 
      The amount of sleep needed is less in people who meditate, because the mind itself is a tremendous consumer of energy. The state of relaxation induced by meditation is not exactly the same as sleep, but it is very good quality rest for the body. The calmer the mind, the more quality rest for the body. 

SENSORY DYSFUNCTION 
      The wide variety of sensory dysfunctions can be dealt with in a variety of ways. The basic rule of thumb is to modify your environment to minimize the amount of invasive stimuli surrounding you. 
      For light sensitivity, you may need to take steps to reduce the intensity of light in your home. For example, replace light bulbs with a lower wattage. When going out, you may need to wear sunglasses, and may even need to wear them indoors. 
      To reduce the effects of loud noises, you may want to wear earplugs, especially while sleeping. While driving, you may choose to keep the car windows up to avoid being shocked and distracted by noise from other vehicles. A horn can of course be anxiety-provoking, especially if it comes from three lanes away but sounds like it is next to you. You may also prefer to drive or ride in cars with the radio off. 
      For eye sensitivity, some people find cool packs or warm packs helpful for relieving the discomfort. Reading creates special problems for many people with CFS. This involves not only the challenge of concentration, but also focusing the eyes and tracking across the page, while remaining on the same line. 
     Linda Miller Iger, Ph.D., of the Chronic Fatigue Syndrome Institute of Beverly Hills, recommends the novel idea of using a reading prosthesis. This is a card you can make from a note card or part of a cardboard box. You cut it to the width of a page of type, with a slit cut in the center. The slit is about a line and a half high, and allows you to move down the page and read one line at a time. In addition you may want to try using a three-panelled barrier around the page to prevent outside visual distractions while reading. 
      Another kind of sensory dysfunction many experience is a much greater allergic responsiveness and sensitivity to environmental toxins, odors, chemicals, or medicines. This is actually an immune over-reaction, in which the immune system itself has the sensory dysfunction. In this case, you need to make your physical environment as non-toxic as possible. Steps you can take: 

• Use non-toxic and natural cleaning materials.
• Refrain from use of scented toiletries.
• Ask people around you to observe the above suggestions.
• Stay away from new construction materials which are still releasing out-gases from glues, paints, etc. Glues are a special problem, and they are present in carpeting, plywood, and many manufactured wood items.

PHYSICAL PAIN 
     There is a great deal of individual variation in terms of remedies for the pain. Medically, people have been helped with the pain of arthralgias and myalgias by the use of non-steroidal and anti-inflammatory drugs. In terms of self-help, some respond well to heat, while others are aggravated by it. This apparently depends on whether the pain is caused by muscle stiffness or the inflammatory autoimmune reaction. If it is the latter, then heat will stimulate a broader immune response, creating more inflammation, which you do not want. 
     Some people are helped by applying ice to the tender points. Some are helped with mild exercise, while others are made worse by exercise. Yoga-type stretching is helpful for some, and walking for others. Because of the range of individual responses, you will need to experiment to find what works for your type of pain. 

GASTROINTESTINAL DIFFICULTIES 
     Some of the digestive disturbance may be due to the effects of viral activity on the tissues lining the digestive tract. This is why it is important to work with a physician who is informed about CFS should you seek medical help for the digestive problems. 
     As mentioned earlier, it is important to be tested for yeast overgrowth and parasites. Beyond that, by paying close attention to your body's reactions you can determine your food sensitivities or allergies, and avoid those foods. Many people have found that their sensitivities and allergies disappear after clearing up their yeast overgrowth. 
     In general, a relatively bland, whole foods, natural diet is usually recommended. This of course means avoiding sugar, caffeine, chocolate, and foods laced with a lot of preservatives and artificial ingredients. This way there is less of a burden placed on the immune system while it is in its healing process. 
     Many people with CFS experience weight changes as a result of fluctuations in your metabolism caused by the disease process. Some have found that the weight changes have endured beyond recovery, whether they are considered desirable or not. This may mean adjusting to a new body image as heavier or lighter than before. It is important to not stress your body in trying to reclaim a prior image of yourself if that is not what your body wants to do. If necessary, supportive counseling can help you develop a more friendly, accepting relationship with your body.  Care should be taken to work with medical supervision if you decide to alter your diet because the weight changes are unacceptable. 

CARDIAC SYMPTOMS 
     To reiterate what we said in Chapter 2, the consensus among CFS experts is that the cardiac symptoms usually do not represent serious coronary problems. Still, it is wise to rule out any more serious heart conditions. 
     In terms of self-help, the practice of deep relaxation and full breathing will contribute to greater calm and a more even heart rate. When you find yourself having the common heart beat irregularities, it is easy to add more stress to the situation with a fear response about what it means. Remind yourself that this is a symptom, and that you can handle it by taking some time to go into abdominal breathing and relaxation. 
     Also, upon consultation with your physician, you may find that magnesium deficiency is a factor, in which case supplementation will help with these symptoms. 

OTHER SYMPTOMS AND ALTERNATIVE TREATMENTS 
     In this discussion we have of course only addressed the main types of symptoms, and there are countless other symptoms possible. As with those discussed here, severity and remedies vary from one individual to the next. 
     In managing the symptoms, you of course do not have to go it alone. You can see yourself as in a partnership with your health care practitioner. In addition to conventional (allopathic) medicine, there are other approaches to medicine which have had varying success with symptoms in CFS. People have received symptomatic relief using a whole range of therapies, including  acupuncture, acupressure massage, herbal medicine, naturopathic medicine, homeopathy, hydrotherapy, colon therapy, and other less-mainstream approaches. Ultimately you have to trust your intuition and inner guidance to steer you to resources that you feel may help you. 
     If you decide to explore alternatives, you need not see yourself as having to choose between mainstream and alternative therapies. Rather, you can use a variety of therapies that complement, rather than compete with, each other. One fact about CFS is very clear: no one approach has all the answers. 

"THIS TOO SHALL PASS" 
     The journey through CFS can bring many moments in which nothing seems to help, and you feel utterly hopeless and full of despair. What can you do to make it through those times of hitting bottom? 
     Remind yourself that the illness and its symptoms are transitory. One of history's greatest psychologists, Gautama Buddha, taught about the principle of "impermanence." His message was that all that we think is real and lasting eventually passes. Usually this understanding is applied to our attachment to material possessions, relationships, or to experiences that we think will bring us contentment. 
     It applies equally, however, to suffering. Nothing lasts forever, not suffering, not the symptoms of CFS, and not CFS itself. Closing your eyes and repeating the affirmation "this too shall pass" has been used for thousands of years as a way for people to gain a sense of detachment from suffering. 
     Another source of help in those moments is to find something to distract your attention away from the symptoms. Melva tells us: "When I find myself in a state of discouragement, I do something. I turn on a relaxation tape, meditate, or look for laughter. I might flick through the TV channels to find a funny program--anything to focus my mind away from my illness." 
     Remember: symptoms pass. People do recover from CFS. Brain lesions do disappear. People have been able to jog, surf, and ski again. There is life after CFS. The symptoms are not something to fight with, they are a natural expression of the illness, and are transitory. As you learn more about your patterns of symptoms, you will gradually be able to reduce their severity and may even prevent some of them. In the next chapter we will explore how to develop an overall lifestyle which will help you to promote your recovery. 

For information about Dr. Collinge's four-CD audio program of inspirational talks and guided self-healing exercises that accompany this book, click here.