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What does it take to be reasonably happy with a chronic illness?
The best copers have been found to be those who are actively involved in their own care, as well as all aspects of their lives. They are also flexible, resourceful, optimistic and positive. They have a practical approach to problem solving. Note that these positive attitudes are possible despite the negative aspects of the disease: physical symptoms, limited activity, family problems and a doctor who doesn't always have all the answers.
Stay in control - People with many different chronic illnesses have demonstrated that when they are actively involved in the world around them - especially in their own health care - their condition improves as well as their attitude.
Appraise your M.S - with realism and flexibility. Do not stubbornly try to do all the things you always did, regardless of your symptoms and changing abilities. This may mean discarding some activities and taking on new ones that are more feasible, enjoyable and rewarding.
Maintain strong bonds with family and friends - Keeping in touch with people is very important. Maintaining strong bonds is an important ingredient to effective living whether you have M.S. or not. As social creatures, most of us need to know we are loved and cared for. We also need to be able to care for others who are important to us. When physical capabilities change with a condition such as M.S., what you can do for others may change. Discuss these changes with your family and friends and together work out new ways to maintain a strong relationship.
Openness - helping and co-operation are all important within the family. Remember that you as the person with M.S. are not the only one who must adjust to a changed situation. Each family member absorbs information about chronic illness and adjusts to it at different rates and in different ways. The adjustment process should be encouraged but not forced. Talk sessions to air feelings about the new family situation will often reveal feelings of anger frustration, fear and uncertainty, as well as positive emotions of love and concern. Negative reactions, when handled constructively, should not be discouraged. Someone who is overly cheerful may actually be suppressing fears, concerns and possibly anger and resentment.
Your relationships with others will have the best chance to remain strong if everyone relaxes and engages in open discussion. You as the person with M.S. are the one to take the initiative. By making the decisions in this situation, you reassure your friends and relatives and put them at ease.
Goals - Making each day count. Live for today; plan for tomorrow; do not grieve for yesterday. In practical terms that means setting realistic short, medium and long term goals. Having a goal - however modest - gives you something to work toward and puts some structure in your life. Many people with M.S. cope better when they carry on their daily activities with a real sense of purpose.
Find an exercise program that's right for you - Studies of the chemical effects of exercise on the brain show that regular, somewhat vigorous exercise can release chemicals called endorphins into the brain, having some of the effects of tranquilizers, muscle relaxants and sedatives. Other studies have found a positive relationship between exercise and both mood and one's thinking processes. Studies are now under way to determine what types and levels of exercise are practical and effective for people with M.S. Findings indicate that M.S. exercise programs can be designed which result in increased physical fitness and feelings of well-being. With the advice from your physician you should engage in the exercise that's right for you at least three times a week.
Avoid the negative cycle - Fatigue can be worsened not only by the course of your M.S. itself, but by depression. Depression often prompts you to withdraw from previously rewarding activities and to engage in fewer social contacts with friends and colleagues. That can lead to reduced physical activity, eroding you physical well-being. In this way a negative cycle can start in which reduced physical activity leads to reduced tolerance for exercise, depression, and even less physical activity. Your doctor may prescribe medication to relieve fatigue or depression, but you yourself need to understand the nature of this cycle and take action to break it.
Don't underestimate the value of spiritual beliefs - Faith is a very personal part of life, but studies of people with chronic illness found that those who have a strong religious or philosophical belief system that helped them understand their situation did better than those without such a source of support. Even the simple act of regular attendance at spiritual gatherings appeared to improve coping, perhaps because it gave those individuals a feeling of belonging and a sense of group support.
Feel comfortable with your doctor - Any doctor can prescribe medication and give you periodic examinations. Having a doctor whom you respect and with whom you feel comfortable discussing health matters is important.
Help and Support
M.S. is a tremendous stress - While no individual has as much control over this disease as he or she would like, it is possible to have considerable control over how to interpret the disease and over how M.S. affects personal character, outlook on life, and the impact on ones family.
To sum up, we have discussed several signposts of good adjustment. It seems that people who manage to 'make it' with M.S. do so in several ways. First, they look into themselves, digging deep to find strength they did not know they had. They come to realise that the process of attaining satisfaction must start with themselves. Secondly, they reach out. Living with this disease requires significant changes in your life and can be a lonely task. The task may be less lonely if you can talk, really talk, with your family, friends, other people with M.S. and with health professionals.
Real talk can provide understanding, suggestions, feedback, and a way to look at and modify your thinking, when necessary. It can facilitate the knowledge that you are involved with the joys and the struggles of others and that your life remains part of the whole, part of the shared human experience.
When you are first told that you have M.S. you may feel upset. You have probably had good health in the past and may find it difficult to believe that your health has been taken away from you.
You may feel a sense of loss, like that following the death of a close relative or friend, and it may take some time to understand the full significance of this feeling. You may want to deny the diagnosis, carrying on as though nothing has happened. All these reactions are normal, but some people will experience them more acuTely than others.
You may find it helpful to talk through your emotions or have questions answered.
