There is no question that the day-to-day struggle to cope with multiple sclerosis can be exhausting. One often despairs that the course of the illness can ever be stilled or any losses of strength or function regained. The attempt to stay even—physically, mentally, or emotionally—with a chronic disease may seem noble, yet it seems so futile.
Yet many fear that not struggling is surrendering. Some people suggest, for example, “doing battle” with an illness to overcome it. They see the illness as an enemy within the body, an alien attacker. Others believe that living as if the disability does not exist is the best policy. Both these approaches seem flawed to us. The first creates an unnecessary antagonism between different aspects of oneself. The second denies the reality ofboth the disease and the human capacity for healing.
It is possible to foster attitudes and take actions that make living with multiple sclerosis easier and may, in the long run, influence its progression and outcomes. The first step in this middle way between struggle and surrender is to recognize that a disease is not a judgment or a punishment. Multiple sclerosis is something that happens to a person because of a variety of factors, known and unknown. There is no blame.
A second step is to realize that a person is neither all-powerful nor helpless to cope with her illness. She can live so that her illness affects, but does not control,her life. An individual is responsible for defining and choosing what the illness means for her.
Does my having M.S. mean I am a victim, doomed to suffer the ravages of an illness that will destroy me and whom and what I love? Or is my misfortune a challenge to meet difficulty with some measure of grace,courage, and compassion for myself and others? How one answers this question is more important than any symptoms or disability a disease may bring.
A third step is to establish a relationship with one’s M.S. Unwanted as it may be, multiple sclerosis is a lifelong partner, for better or for worse, in sickness andin health. To view it as an enemy or to ignore its presence does not, unfortunately, make it disappear. One must get to know it, live with it, come to terms with it.
Of course, this does not mean that M.S. is your friend. Rather, one must accept it as an unwelcome companion on a long journey. Acquaint yourself with its moods,departures, and returns. Keep a wary eye upon it; know when to rest, to push, to struggle, and to compromise.
And unlike with a friend, rejoice at its retreats and regret its arrivals.
Acknowledging the reality of the effects of M.S. upon your life and its potential impact upon your future is a crucial fourth step. It would be wise, for example, to consider how one’s employment might be disrupted by M.S. and to investigate alternative career paths. Because you may lose the opportunity to obtain disability insurance, preparations for financial security must be made.
Some people feel overwhelmed, not so much by the immediate problem as by the possible or long-term implications of M.S. for themselves and their families. It takes great courage to face these issues squarely, but one must do so. It is worthwhile to undergo the anxiety involved in dealing with these practical matters, rather than put them off. Hoping that bad things will go away does not make them disappear.
The next step is to imagine the kind of future you want for yourself. Do you want to be physically, emotionally and mentally healthy? To move with grace, mobility and assurance? To function effectively at work and at home? To develop and maintain satisfying relationships with family and friends? To meet and cope with exacerbations in a calm and productive way? These are challenges and goals to be reached for, not tests to be failed or passed.
A person may not attain what he aims for. Yet the stretch toward what he wants reinforces and nourishes a self-pride that is a source of enormous confidence, determination and strength. A life based upon what one aspires to is of a different grain than one that flounders around what a person wants to avoid.
The path of life for a person with multiple sclerosis does not differ fundamentally from anyone else’s. There is an old tale about a man who complains about his lot in life. An angel shows him a tree on which knapsacks hang from every limb. The angel invites the man to look inside each bundle and choose which he wants. After gazing into all of them, the man decides to keep his own. The knapsacks contain other men’s troubles.
In imagining the life you want for yourself, it is important to be aware of how stress affects your body. Stress,of course, is something each person experiences in life. Many people enjoy a certain amount of stress and find it pushes them toward greater risk or achievement. For other people, smaller amounts of stress can be quite harmful. For most people, the pressure of chronic, unwanted stress is debilitating.
It is common for people with M.S. to find that stress causes a temporary worsening of their symptoms. It can increase both the severity and the frequency of exacerbations. When a person is calm, rested, and relaxed, the physical organism can cope with life events effectively, but during times of anxiety and tension, symptoms may flare up.
Louise, the psychiatrist, reports that under stress her legs don’t work as well. “When I stand to greet a new patient, I’m occasionally embarrassed by how long it takes me to rise and balance. Sometimes, as I begin to shake hands, I find I have to balance myself with my other hand. Also, when I’m feeling this way, my tongueseems to stumble a bit and my speech worsens.” Though these responses are temporary and nonprogressive, they are frustrating.
Louise decided to ameliorate the impact of stress by learning and using simple methods of relaxation. When she practiced these techniques, flare-ups of the M.S. lessened. In addition, the complications of leg problems, muscle weakness, and loss of fluency in speech that had previously occurred on stressful days almost disappeared. Louise felt better and more in control.
When existing tension makes it harder to cope with new difficulties, short relaxation exercises can break the stress cycle and help body parts to relax and reduce much of the physical, emotional, and mental strain that accompanies M.S. The following simple exercises are easy to do in your home.
1. From a standing or sitting position, stretch your arms as high as you can reach. Then bend your body from the waist and let your arms hang in front of you. Repeat this exercise ten times, without strain, reaching and stretching each time.
2. Pull your shoulders back and rotate them forward and back five times. Do a few gentle head rolls at the end.
3. Close your eyes, slowly inhale and exhale, allowing your abdomen to rise as air enters. Breathe in and out, relaxing completely.
This prepares you to be relaxed and alert for the relaxation exercise that follows. Try these exercises at the same time each day in a quiet environment. Some kinds of music may be an aid to exercise.
The following method of relaxation has been used in many cultures throughout history. The background of the technique and its documented effectiveness may be found in The Relaxation Response by Herbert Benson,M.D., published by Avon Books.
The following meditation exercise is taken from Maximizing Your Health, edited by Robert Buxbaum, M.D., and Debra Frankel, M.S., O.T.R., published by the Massachusetts chapter of the National Multiple Sclero-sis Society, 400-1 Totten Pond Road, Waltham, MA 02154. This is an excellent program of graded exerciseand meditation for people with multiple sclerosis. We recommend it to all.
1. Depending on your preference and physical condition, sit either on a chair or on cushions on the floor or in bed. Keep your back comfortably straight so that you can breathe naturally; let your eyes close gently.
2. Draw your attention inward and begin to center your attention on your breathing. Without trying to breathe more deeply or control your breath in any way, feel how the abdomen expands and contracts like a balloon as you inhale and exhale. Now relax your muscles as best you can, starting at your feet and working toward your head. Breathe in and then out; let go of any tension in your feet. Move up to your ankles, again letting tension go as you exhale. In this way, work up your body, relaxing your lower legs, thighs, buttocks, chest, back, shoulders, neck, upper arms, lower arms, hands, and then your face and scalp.
3. Continue to focus your attention on your breathing, centering on the contraction and expansion of your abdomen. On each exhale, silently repeat a word or phrase of your choice. It can be “relax,” “peace,” “one,” a short prayer, or an affirmation such as “better and better” or “stronger and stronger.” Don’t change from one word to another. Make a choice and stick with it. The word or phrase serves as a further focus for your concentration, allowing you to let go of the many stressful thoughts about the past or future that create tension.
4. Keep a passive attitude. It is natural for thoughts to enter your mind and for your concentration to wander. You will be amazed at how busy your mind is! Identify the drift of the mind and just let it go. You can return to your thoughts later. Meanwhile, return to the breathing and the repetition of your word or phrase. In time, it will become easier to concentrate.
Continue the meditation for ten minutes, longer if you can. At the end, sit quietly for a minute or two with your eyes closed. Begin to think of the exercises you will do; imagine yourself doing them to the very best of your ability. Then let your eyes open gradually; sit for another moment before you begin your daily routine.
The goal of these exercises is not to eliminate stress. To most of us, that would mean eliminating the living process. Many people thrive on stress. Without it life would be boring. Negative stress can, however, trigger exacerbations as well as affect our digestive systems, heartbeat, and blood pressure. Learning how to disengage from stressful thoughts and feelings through calming meditation is essential to control the complications of chronic illness.
There is no diet capable of healing M.S. or designed strictly for people with M.S. Diet and nutrition are, however, important to overall health. The healthiest diet for most people is also the optimal way for those with M.S. to eat.
No one diet, of course, is ideal for all. Nevertheless, dietary guidelines have been established for healthy Americans to use as a basis for food selection. A well-balanced diet includes portions from the major food groups, including fruits and vegetables, whole grain or enriched breads, cereals, dairy products, and protein foods such as fish, poultry, legumes, meat, or eggs.
Other worthwhile hints for healthy eating include maintaining a normal weight for your frame, which is particularly important for more inactive and less mobile people with M.S., as well as avoiding too much fat and eating food with adequate starch and fiber. Too much sugar, salt, and alcohol should be avoided.
The following are suggestions for reducing fat in the diet:
Limit consumption of cream, butter, hydrogenated mar-garine or shortening, and products made with these;
Use low-fat or skim milk;
Limit the consumption of fatty meats and cheese;
Use lean meats, poultry, fish, dried peas or beans, andtofu as protein sources.
To improve eating habits, it is important to eat slowly,prepare smaller portions, and avoid tempting “seconds.”
A word about alcohol: Alcohol should be used prudently by individuals with M.S. It is a central nervous system depressant and individuals with balance and coordination problems are very likely to be adversely affected by it. The possibility of accident or injury is increased by its excessive use. Also, problems with incontinence or urgency to urinate are likely to be exacerbated by alcohol. If you wish to drink, do so slowly and carefully follow these guidelines for safe drinking:
Know that you may choose not to drink and can say “no”to alcoholic beverages for any reason;
Don’t drink and drive;
Don’t drink alone; If you are a woman, realize that alcohol will have a greatereffect on you even if you weigh the same as a man;
Drink slowly and avoid gulping a drink—alcohol is a drug;
Don’t make drinking the main focus of your social event;
Recognize that the use of alcohol for purposes of copingwith problems is a high-risk behavior (if you feel you arehaving a problem, consult someone);
If you are depressed, avoid alcohol; it is a depressant.
We have presented a prescription for maintaining as good health as possible—a positive and realistic attitude, effectively coping with stress using methods of relaxation and meditation, a regular program of exercise, and alow-fat diet. No one can guarantee that the result willbe a decrease in frequency and severity of exacerbations, but can a person with M.S. cure her disease by followingmedical, nutritional, or spiritual instruction of any kind?Unfortunately the answer at this time is still no.
It is true, however, that how people perceive their potential for effective living can influence their future behavior and health. An individual with a strong positive attitude, armed with the necessary medical information and guidance, can have a say in the quality of his life. The fact of illness provides some limits on what is possible; it does not limit the attitude one takes toward one’s self and one’s life.
Healing, health, wealth, and wholeness all come from the same root word. They originally applied more to spiritual attitude and state of mind than to physical function. A man enfeebled by age, injury, or even disease could nonetheless be said to be healthy, wealthy, and wise if he treated others with kindness and respect and fulfilled his obligations as well as he was able. Conversely, a man of cruelty, whatever his physicalwell-being, would be regarded as more animal than person, someone with a sickness of the soul in need of healing. A chronic illness of the body need not become a disease of spirit and mind. Each person makes a choice.