Living with Multiple Sclerosis (MS)

When you get an illness like bronchitis or the flu, you know you will be feeling better and functioning normally within a week or so. A chronic illness is different. A chronic illness, such as multiple sclerosis (MS), will never go away and can disrupt your lifestyle in many ways. Coping and adjustment calls for learning to adapt to the presence of MS in your life. You will need willingness to learn the problem-solving and self-management skills needed to cope with MS.

Effects of chronic illness

Pain and fatigue may become a frequent part of your day. Physical changes from a disease process may occur and affect your appearance. These changes may diminish your positive self-image. When you don't feel good about yourself, you may prefer isolation and withdraw from friends and social activities.

Multiple sclerosis can also influence your ability to function at work. Morning stiffness, decreased range of motion, and other physical limitations may require you to modify your work activities and environment. Decreased work ability can lead to financial difficulties. For the homemaker, a specific task may take much longer to accomplish. You may need the help of your spouse, a relative, or a home healthcare provider. As your life changes, you may feel a loss of control and more anxious from the uncertainty of what lies ahead.

Bringing it all into perspective

If you have MS, you are a person with MS; it should not define who you are. The bottom line is that you are the same person you were before you were diagnosed—you just have a heavier load to bear. The best thing you can do is to learn how to make your life better. Some tips are:

  • Get help if you need it. The most important step you can take is to seek help as soon as you feel less able to cope. Taking action early will enable you to understand and deal with the many effects of a chronic illness. Learning to manage stress will help you to maintain a positive physical, emotional, and spiritual outlook on life. A mental healthcare provider can design a treatment plan to meet your specific needs. Strategies can be designed to help you regain a sense of control over your life and improve your quality of life, something everyone deserves. At times, if depression is present, medications other than those treating the physical illness may be ordered to help lift your mood
  • Find a support group. Support groups are a very useful sharing experience. They provide an environment where you can learn new ways of dealing with your illness. You may want to share approaches you have discovered with others. You will also gain strength in knowing that you are not facing hardships alone
  • Individual counseling. Sometimes people have problems that are better addressed in a one-on-one atmosphere. By participating in individual counseling, you may more effectively express sensitive or private feelings you have about your illness and its impact on your lifestyle and relationships
  • Take care of yourself. Follow nutrition guidelines, exercise, develop stress management techniques, and get enough rest.
  • Keep a diary. Jot down your experiences, symptoms and feelings. This will not only be a valuable tool in helping your physician, it will also help you learn to express yourself.
  • Take control. There is often such a sense of uncertainty with MS that it may help to take control of the things in your life that you can control. You should also consider some of your life-planning issues, such as finances, work, adapting your home, and other practical issues. Be proactive in your health, get educated, and ask questions.
  • Look ahead. Identify specific challenges or hurdles that are affecting or may affect your lifestyle.
  • Set aside time to reflect on and assess your needs for the day that lies ahead.
  • Create a manageable flow of activities and conserve energy.
  • Share your thoughts, needs, and feelings, and be open to feedback from those you trust.
  • Try to counteract self-defeating thoughts, feelings and behaviors. In other words, “don't always believe what you think” and “don’t let emotions drive the bus.”
  • Simplify your life by letting go of or minimizing activities, clutter, and yes, even people who exhaust you or negatively complicate your life.
  • Seek help to cope with on-going or hard-to-solve problems.
  • Develop a sense of humor.

Ten good habits to follow

  1. Commit to creating a safe and healthy lifestyle.
  2. Become well-informed about multiple sclerosis and available treatments.
  3. Become a student of yourself and your environment. Remember that "knowledge is power."
  4. Be proactive and anticipate changes and the need to adjust to each new symptom or exacerbation.
  5. Create a healthy support system which may include any or all of the following: Family. Friends, Healthcare team, Clergy and Community.
  6. Learn to manage external and internal demands by managing or altering the source of the stress and/or regulating emotional responses and distress.
  7. Refuse to make yourself sick with worry.
  8. Have compassion with yourself when presented with the challenges and/or losses that come with a lifelong medical condition.
  9. Remember: you are not your illness.
  10. Live one day at a time, and always remain hopeful.

What to do at times of symptom activity

  • Slow down
  • Create relaxing rituals
  • Nourish your body
  • Unwind your mind
  • Be patient
  • Talk it out with a supportive listener
  • Remember to laugh
  • Pamper yourself
  • Express your emotions
  • Self-soothe while seeking out support from others

Having MS is a lifelong journey requiring the ability to create balance and to ask for support.

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