My strength is the strength of ten. Because my heart is pure. (Tennyson)
When life confronts you with a challenge, dealing with it will require time and energy. This may mean that for at least a short time, you must give up some activities or interests. Unfortunately, the first things to go are often those that give you some enjoyment and pleasure. A hobby, sport or other activity is more expendable than work. If something has to go, it is usually leisure.
This is unfortunate because leisure activities help you combat day to day tensions and stress. They distract your thoughts from worries, calm your mind and body, and provide relief from boredom. Enjoyable activities are common and provide natural ways of relieving tension. When set aside, you rapidly lose their benefits. This is typically what happens when illness arises. We spend less time with leisure, more time with other demands. At exactly the time when you most need to attend to your general well-being, you are likely to spend less time involved in pursuits that you enjoy. This is one way that illness can take its toll on your well-being.
Looking after yourself is the topic of this chapter. We discuss methods for you to soothe and rejuvenate yourself. And we explain strategies that can help you rest in preparation for the challenges ahead. This idea is important to transplant candidates, recipients and their families. You will live with a serious illness and its treatment over a lengthy period. It can seem as though there is always something more important to do than to relax. We emphasize, in this chapter, the important role of leisure and other means of relaxation.
Our goal is to counter the common tendency to defer relaxing pursuits during times of stress. However, we recognize that there are many demands on your time and energy. We do not wish to add another chore to your schedule. Therefore, we emphasize strategies that offer the greatest potential gain for the least possible effort.
Many transplant candidates and recipients are at some time or another, overwhelmed with tension and stress. They have often asked us how they can better deal with nervous tension. Frequently, they have asked about cassette tapes with relaxation exercises on them. People usually assume that if they are tense, they should learn some new way to deal with their stress. This may or may not be necessary.
We agree fully that relaxation and other stress management techniques can be an enjoyable way to refresh yourself. If you are already familiar with progressive muscular relaxation, self-hypnosis or meditation, we encourage you to pursue these calming practices. Otherwise, don't jump on the bandwagon just yet. First, we have some ideas for you to consider. Later, we review some specific relaxation techniques.
First, we suggest that you take a few moments to recall any activities that you have ever used to enjoy yourself or to relax. Write them down on a list. Reading, taking a walk, bingo or cards, building models, knitting, listening to music or watching sports are not activities that most people think of as means of dealing with stress. Most just think of them as fun. But they are also ways that you have found to relieve tension.
You can learn some things about yourself by listing your leisure interests. Is the list long? If there are many items on your list, then you likely value your leisure time highly. This may also be the case if you have a short list, but spend a great deal of time with these interests. But you may have very few items on your list. Or your may rarely find time for the things you enjoy. If this describes you, you may not take enough time to relax and refresh yourself.
Illness may have forced you to give up preferred leisure pursuits. This can occur with people who were very active in sports or other physically demanding activities. This is always a double blow. You lose an important way of relieving stress while you are under greater stress with illness. If you have been very athletic, you may or may not have had much interest in quieter hobbies. It will be a great challenge for you to adapt to any physical limitations imposed by illness. Those who have had a passion for stamp collecting will not have the same adjustment to make as a long distance runner.
No matter whether your first choice of leisure activity is crafts, model building, collecting, or whatever, it will help you to keep busy. You will be better off keeping active than doing nothing. These activities will help to keep your mind off other concerns. Everybody needs a break from worry. Enjoyable hobbies are an excellent way to occupy your mind. Besides, you may surprise yourself and find out that you enjoy or have an aptitude for some new interest.
Others that we have met found that they could channel their skills into entirely new interests and activities. Some have formed a self-help group, raised funds, printed a transplant newsletter or organized welcome packages for new candidates. One librarian used her skills to develop a reading list for transplant patients. When one of her fellow candidates had a question, she would search out reading materials with her home computer. Within a day or two, the candidate would have the information that he or she wanted.
You may feel too preoccupied with other demands to pursue your favorite leisure activities. Some feel guilty about taking time for a seemingly frivolous activity. This is understandable during acute illness. But the longer that you or a family member must live with illness, the more important it is for you to normalize your life as much as is possible. Take up some old or new interests. You don't want illness to control your life more than necessary. Eventually, it will be time to take your life back. You can begin this by resuming interests that you have put aside.
After reviewing your situation in this way, you may find that you don't need any new strategies to deal with your stress right now. You may have just set aside some strategies that you could renew. Too often, we neglect previously enjoyed activities in the search for something new. Look first to those recreations with which you are most familiar. If they are not possible to pursue, consider some new interests.
There is a scientific term for talking to yourself. Psychologists refer to the thoughts on your mind as cognitive self-statements. We have decided to use a simpler term for talking to yourself. This is because self-talk is a simple mental activity that occurs constantly. Unfortunately, most people vastly underestimate the influence of the thoughts that occupy their minds.
Let's get one thing straight right now. It is not crazy to talk to yourself in your mind. It is normal. Everybody does it, every day, most of the time. The problem is that most people do not realize the hypnotic power of the messages that pass repeatedly through their minds. We allow self talk to ramble on with little heed. At best, the potential benefits of self-talk are lost. At worst, we allow a constant barrage of worry or self-criticism to play constantly on our minds, and to steadily erode our self-confidence. Rather than view self talk as having great influence on ourselves, we dismiss it as an inconsequential mental activity. We allow it to run out of control.
It is truly amazing what people can talk themselves into, or out of. Learning to adapt the way you talk to yourself encourages constructive use of an activity that you do all of the time anyway. For the small effort involved, there is no more useful way for transplant patients and their families to help themselves manage stressful events.
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We are not suggesting that medical tests or procedures are a pleasant way to spend an afternoon. We are also not suggesting that you can talk yourself into believing that they are. But given the obvious influence of self-talk, we do suggest that there is merit in questioning the thoughts that pass through your mind.
By questioning the thoughts that pass through you mind, you will counteract the grip that they have on you. "Is there any reason to think that this thought is true? How likely is the catastrophe about which I worry? Am I exaggerating dangers? How is this worry affecting me? Is there anything else that I can do to help with the situation? I wonder what someone else would say if they knew what I was thinking? Would they really find my thoughts so crazy? Or would they likely find them perfectly normal? Is it helpful to blame myself for unwanted thoughts? Is there any point in trying to force them away? Has this been helpful in the past? Would it be better to simply notice them and let them pass on? Could I then get on with other things that I enjoy?"
Table 6.1 lists some examples of self-talk that are usually unhelpful. Many of us allow critical or worrisome thoughts to occur unnoticed. By doing so, we allow them to influence us automatically and without question. By allowing this, you implicitly accept the statements as truth. For better or worse, you tend to believe and to identify with this habitual mental view of yourself. This can at times, begin a vicious cycle of demoralization and lowering self-esteem, fueling more negative self-statements.
The steps to working with your self-talk are as follows. First, take time to notice the thoughts that pass through you mind. In particular, pay attention to your thoughts during times of stress. "I am going to make a fool of myself. I am sure that nobody else is silly enough to worry about this. I should be able to control myself better. I can not let anybody see that I am worried." You can easily see that this barrage of self-criticism cannot possibly have anything other than an upsetting effect. It will tend to increase your sensitivity to pain or other discomfort. How could self-talk like this possibly be helpful?
Second, question the truth of the self-talk that passes through your mind. "Are things really as bad as I imagine? Am I sure that others aren't thinking similarly? Do I expect too much of myself? Is this really what I think? Or is the thought not at all consistent with my beliefs?"
You may not have an immediate answer for all the questions that may arise. But by simply noticing your thoughts and questioning their accuracy, you help to break the grip that they have on your life.
We cannot emphasize this enough. When you allow critical self-talk to pass through your mind unnoticed and without question, you implicitly accept the statements as truth. The thoughts take hold on you as if they were as much a part of you as your arm or leg. But when you question negative self-talk, you loosen its grip. You free yourself, little by little, from its automatic influence. Consequently, your sense of confidence and mastery grow.
Finally, don't try to overtly control your mind. Just by reading this section, you may notice more of your thoughts. If you find undesirable self-talk, your first impulse will be to try to stop it. You may try to force your mind into submission. But remember that you are likely fighting years of habit. You are unlikely to force thoughts forever out of mind just because you do not wish them to be there. The problem is not best approached as a battle of wills. This is a setup for frustration.
The reason for this is simple. Habit has made these thoughts a part of you. You can't erase them any more than you can pull a weak muscle out of your leg and throw it away. But if you are not happy with the muscles in your legs, you can work with them. You can strengthen them with exercise, stretch them for relaxation, and eat nourishing foods to provide them with nutrients. With persistence and time, the muscles in your legs will adjust more to your liking.
It is the same with thoughts. Notice them. Question whether they are true for you or not. Accept those that reflect your true beliefs and expectations. Let those that don't, pass on. Refine your thoughts by discussing them with others whom you trust and respect. Use logic and facts to counter unrealistic fears. Reassure yourself when your thoughts exaggerate danger. Try them on for size, as if you were shopping for new clothes. But remember that you do not need to buy them all. If they don't suit, just hang them back on a rack and walk on.
In this way, you will gradually learn of the distinction between you and your thoughts. You do not have to be carried away by a river of habitual self-talk. See your thoughts for what they are ideas to embrace or discard as you wish.
Table 6.2 lists some reassuring types of self-talk. How often do you find yourself saying things like these to yourself? Unfortunately for many, the answer is not very often. It can almost seem unnatural to have complimentary or self-assuring thoughts on mind for some. But what if you were eventually able to replace critical and derogatory thoughts with these? What if Melissa had thought differently?
A mantra is a phrase, sentence or paragraph that you repeat in your mind. Usually, you choose some passage that is meaningful or soothing to you, one that reassures and calms you. For example, some will use a quotation from a famous person whom they respect. Others choose a favorite religious passage. It doesn't matter what phrase you choose. As you say your mantra over to yourself, it becomes like a favorite old pair of pants, soothing and comfortable.
Take your time when you set out to choose a mantra for yourself. After you have chosen say it to yourself during times of calm and relaxation. If you do relaxation exercises, remember to repeat your mantra a few times when most relaxed. This will help your body to associate serenity with the sound of the mantra in your mind. It becomes a cue for your body to relax whenever you think it over in your mind.
Sometimes it is soothing to say your mantra in rhythm with your breath. One young man told us that he would repeat his mantra, "Within myself at peace," in time with his out breath. He said that, "...wherever I am during the day, whatever I am doing, I can touch a space inside myself that is at peace. It does not matter what is going on around me, I can feel at ease."
There are many reasons why a mantra is a useful aid. A mantra is private. Nobody knows what you are saying in your mind. They only know that you look at ease. It is also very portable. A mantra is always with you. You will never forget it at home. When you find yourself caught up in the business of the day, your mantra reminds you of the calmness and serenity that occur during quiet times of relaxation.
During times of stress or anxiety, a mantra provides a focus for your inner attention. Many find that they can ride out fear, panic, anxiety and other disturbing emotional states by repeating their mantra over continuously in their mind. It helps you maintain your presence of mind. This reassures you that there is a part of you that is not overwhelmed by emotion. You and your mantra sit in the center of the panic, like the calm eye in the center of a cyclone, an anchor to hold to in a storm. This will enhance your ability to tolerate stressful times.
Paul: Although he did not consider himself religious, Paul remembered one bible verse from his childhood. He had memorized it for a recital. For some reason, he still remembered the words. When he said it to himself, he found it calming. No matter what was happening around him, he could repeat the verse and feel warm inside. The passage seemed to remind him of an easier time in his life. He repeated it in his mind whenever he had a blood test taken.
In the past, letter writing was more common than it is today. It wasn't possible to pick up the telephone and talk to a relative or friend. People took pride in their writing. They carefully searched their thoughts for what they wished to write down. Similarly, writing in a diary was fashionable for many years. Much of what we know about the lives of famous people from the past comes from the letters they wrote and the diaries they kept.
This kind of writing is rapidly becoming a lost art. Writing takes time. But it can seem like there is always something more important to require our attention. Quiet reflection and writing are easy to put aside.
This is unfortunate because the busier that life is, the more important it is to make time to reflect on events. For the transplant patient or their family, much can happen very rapidly. It is almost impossible to keep track of everything that is going on inside and around you. This leaves a candidate or recipient with a demoralizing sense that he or she is not in control, not keeping up.
Writing about your days in a diary can counteract the sense that too much is happening for you to keep track of. The quiet time that you spend writing your thoughts down is beneficial. For many people who keep a diary, this is the only time in their day that they spend alone, reflecting on the day's events. It may be the only time possible to catch up with your thoughts. You can write about what has happened to you, how it feels and what the changes mean for you and those around you. Often, writing in this way will remind you of meaningful events that you have forgotten.
Writing things down on paper forces you to organize the thoughts in your mind. And you don't have to worry about what others will think. What you write down is for your eyes only. Writing also contributes to a sense of closure or resolution to your day. It is a way to put the day's events behind you before relaxing or going to sleep. Beyond these immediate and therapeutic benefits of keeping a diary, you will have a record of your transplant experience to look back on later. Several transplant recipients have published books from their personal record of transplantation.
We are often asked questions like, "Is it really necessary to talk about this? Or, What's the point of talking? It won't change the situation." Hesitancy to talk about a stressful or tragic situation may arise for many reasons. However, most common is a fear that associated emotional experience will prove overwhelming. This is more openly expressed by the question, "Why should I upset myself by talking about things that I cannot change?" Few enjoy emotional upset. Even fewer wish this in public. But by persistently avoiding any discussion of one's situation, the potential benefits of interaction are lost.
History has shown that during times of tragedy, people gather for mutual support. They share more than just information. Listening to another talk about his or herself can help you organize your own thoughts better. You may hear something that helps you to understand your situation in a new way. Or you might learn from another person's description of how they deal with transplantation. And while you derive benefit from conversation, someone else may hear welcome news or reassurance in what you say.
For these and other reasons, many transplant centers offer meetings for transplant candidates, recipients and their families to talk together. These include informal gatherings, parties, welcoming committees, support groups, and social outings. Clinic waiting areas are popular settings for conversation. The team told one recipient who had recovered well after kidney transplant that she only needed to attend clinic once every three months. She commented that she preferred more regular meetings so that she could keep up with the gossip that circulated regularly.
You are likely to be the only person on your block (or at your workplace, or from your circle of friends) who has had or is waiting for transplantation. Talking with other candidates or recipients is a valuable way to learn more about transplantation. Someone else in similar circumstances can sometimes understand in ways that nobody else can. Many have commented to us how meaningful the acquaintances were that they made while awaiting or recovering from transplantation.
Sometimes, others will encourage you to speak openly of your situation. This can happen when someone else thinks that you could benefit from talking. If a transplant staff person finds you to be troubled or isolated, he or she is likely to suggest that you attend some group gatherings with other candidates or recipients.
Usually, it is best for you to at least consider this advice. But those who offer their advice should also keep a few things in mind. Not everybody likes attending group gatherings. If you have never been at ease talking in a group, the idea of doing this may seem strange. Also important to remember is that while some talk of their situation while it is ongoing, others hold onto their thoughts and feelings until much later. It can sometimes be easier to talk about things once you are otherwise less burdened. Some will try to deal with their circumstances by diverting their attention to other activities. For these, talking frequently about transplantation can arouse anxiety.
If this describes you, there are a couple of points to keep in mind. First, remember that there will always be several people in any group who are also uneasy about speaking in front of others. You will not be alone. Second, just because you attend a group meeting does not mean that you have to talk much. You can gain a lot just by listening. When you feel ready, you can speak up. Finally, most programs offer private counseling for those who are troubled but cannot benefit from group meetings.
For the effort and time involved, working with your self talk, keeping a diary, and talking with others are the most useful tools available for coping with the daily tensions that arise with transplantation.
Physiological relaxation occurs when your body is deeply relaxed, your mind calm but alert. Many physical activities of the body change during this fully relaxed state. Breathing is slow and rhythmic. Muscles loosen. Pulse and blood pressure decrease. And the electrical impulses in the brain steady. Physiological relaxation is usually only possible when your body is still and your mind not occupied with its usual rapid stream of thoughts and images. There are many different ways of learning physiological relaxation.
When people hear of this type of deep relaxation, a common first reaction is, "What do I need that for? I relax fine when I listen to music." So far in this chapter, we have encouraged strategies that can help to calm you any time throughout the day. Not everyone is familiar with the profound calmness possible with physiological relaxation. Reserve practice in this more complete form of relaxation for a quiet and private time that you set aside for yourself. It is a time when you learn the art of relaxing yourself deeply.
The potential benefits of physiological relaxation are many. This profound state of relaxation is a refreshing break in any day. Many people learn with time, to enter this state almost at will. With regular practice, the benefits generalize throughout your day. As you become familiar with this experience of deep relaxation, you will more easily notice signs of tension early. Your use of self-talk, a mantra, or any other technique to release tension is more effective because stress has not had a chance to build.
These and other benefits are largely based on one basic principle of psychology: it is not possible to feel tense and relaxed simultaneously. When you notice tension, do not bother trying to 'make it stop.' This forced approach will only frustrate you more. Just remember the ways that you have learned to calm and relax yourself. In this way, calmness will replace feelings of tension. It is not possible for them to coexist.
You have probably heard of some relaxation techniques. Examples include progressive muscular relaxation, self-hypnosis and meditation. Introductions to these techniques are commonly avail-able on cassette tapes. The benefits of each arise in part due to physiological relaxation. Each technique provides a different means of achieving this calm state. You are free to experiment with any of the techniques that others or we describe. Whatever approach you choose, there are a few principles to keep in mind.
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Am I hurting myself if I don't feel up to all these suggestions?
I have heard that it promotes healing to hold positive thoughts in mind. Is this true?
