June 1st, 2002
Zielinski, Karen J
Real Living with Multiple Sclerosis
My husband has chronic progressive MS and I'm worried about him. I give him his injections as prescribed, and make sure that he takes all his medications. I cook healthy meals and take him to all his doctor appointments as needed: dentist, eye doctor, neurologist, family doctor, and so on. I don't mind; to me, that's what marriage is all about.
The problem is that he's tired all the time and he isn't interested in anything. He used to read a lot, but lately all he wants to do is watch TV. Now I know there's more to life than television, but how do you decide what a person should do with their life when they have mobility problems and just getting dressed is a major chore? My children are grown and live nearby. They are wonderful people, are concerned about their dad, and are willing to help in any way possible.
Any comments would be greatly appreciated.
Nancy Chicago, Ill.
I'd talk to your husband about trying to do some things that are a bit more social, or taking up a hobby. It seems that those of us with MS usually know how to handle the injections, pills, rest, and mobility needs. But human beings are a complex mix of the physical, emotional, spiritual, sexual, and social self. Sometimes we only take care of our physical needs, but concentrating on only one aspect of our lives can lead to neglect of another part. Have you ever considered talking with your husband about getting a hobby or becoming involved in some outdoor activity? Hobbies and play enhance our self-concept, give us a sense of meaning and purpose, and can contribute to our overall wellness.
The book Waist-high in the World by Nancy Mairs cleverly talks about the social exclusion that disability can bring. Nancy has MS and says that, "I felt permanently exiled from `normality.' Whether imposed by self or society, this outsider status-and not the disability itself-constitutes the most daunting barrier for people with physical impairments, because it, even more than flights of steps or elevators without Braille, prevents them from participating fully in the outside world, where most of life's satisfactions dwell."
Staying at home might be a necessity, depending on how much your husband can get around, but the creative energy of play, social interaction, or a hobby is just as important as his pills and pokes with a needle.
Indeed, anyone's overall health must include involvement in hobbies, play, or some type of recreation. These things require thinking, communicating with others, and moving, and can bring about a number of healthy side effects. More important, playing and being involved in hobbies calls us to be creative. It is an attitude that changes the everyday, mundane parts of our lives into something more exciting. Play can revitalize us, and depending on what we become involved in, can call for social interaction. Getting out of the house and doing something recreational also takes our mind off our MS management for a while.
You sound eager to get your husband out and about. I think whatever you can do to get him involved in something new or different can only be a move for the better.
Hobbies might include a club where people gather to discuss books or films, or birdwatching, where much of the activity can be done from a park, which is usually accessible.
There's also travel, cooking, or even shopping, depending on a person's interests and ability. Contact 1-800-FightMS to find out which activities are available in your area.
Sometimes friends or caregivers of the person with MS may limit them, thinking they cannot go out and see a movie, eat at a restaurant, or enjoy shopping. You sound like you'd be willing to take your husband different places. But I also find that those of us with disabilities are often the ones who limit our social life. When we stay home and refuse to embark on other activities, we define ourselves by our disability, focusing on what we cannot do instead of on who we are.
If you talk with your husband about his getting involved socially or starting up a hobby, you both should decide on what's realistic with his present level of strength, mobility, and interest.
I am grateful to the people who still invite me to attend various activities, those who do not decide on their own that attending a concert or going on a trip might be "difficult" for me. Let me decide and invite me. We can talk about it. A person's attitudes about disability can be the disability. Friends and family can be wonderful about including their family members with disabilities to attend various outings. Take them up on their invitations. They are there to help you if any crisis comes up.
Getting involved is not easy-but it's good for our health.
Advisory Board Note:
Although fatigue is a common symptom in MS, it may have a variety of
explanations. Sometimes it is one manifestation of depression. A loss of
interest in activities one previously enjoyed is also frequently part of
depression, a condition that is also quite prevalent in MS. The good news
is that it responds well to treatment. It would be advisable for Nancy
and her husband to discuss his symptoms with his doctor.
© 2002 Real Living with Multiple Sclerosis