Living with multiple sclerosis (MS) is like being forced to play a game you never signed up for. The game’s rules often change in ways that aren’t very fair. You experience unpredictable symptoms such as weakness, heat sensitivity, balance problems, or a dozen others. On top of this, you have all of the usual life challenges — getting a job, establishing good relationships, and finding meaning in your life.
Sometimes in the game of MS, you’ll experience a new symptom or the worsening of an old one. Or some new challenge arises that disrupts the routines you’ve worked out to get through your day and live your life.
How will you deal with these new challenges? The goal of the game of MS is to keep finding ways to live well, whatever life throws at you.
Ellen Grund, a retired NASA researcher who lives in Massachusetts, has been playing the MS game well for 20 years. She recommends some skills that have helped her:
1. Plan Ahead and Set Priorities
One big MS challenge is that you often don’t know how you’ll feel from day to day or hour to hour. Grund says the keys to dealing with this are planning ahead and setting priorities.
For example, Grund loves making pottery. Her studio is a 15-minute drive from her home at night, but during the day, traffic makes it an hour each way.
“I go at night,” she says. “I use my energy for what I love, not for the act of getting there.”
Fatigue is her worst symptom. To work around it, Grund remembers to take breaks. “I lie down; I take naps. I miss some stuff. That’s how I’m able to do what is most important to me,” she says.
Like many people with MS, Grund is sensitive to heat. She’s also a dog owner.
“I don’t take dogs out in the heat of day,” she says. “They have to wait until it cools down.”
2. Learn to Problem-Solve
The ways Grund arranges her schedule around traffic and heat are examples of problem solving.
Stanford University’s Chronic Disease Self-Management Program teaches a five-step problem-solving strategy that can help you overcome your particular challenges:
- Define the problem. Is it “My leg is too weak”? Or “The stairs are too steep”? Defining the problem differently leads to different solutions.
- Come up with several ideas. You can research books or the Internet; ask professionals, friends, or a support group; or meditate to come up with some ideas for yourself.
- Pick an idea and try it.
- Keep track of what works and what doesn’t.
- If your idea solves the problem, fine. If not, try another solution.
3. Get Help
Everyone needs help, and people with MS need more than most. This is not a bad thing; helping and being helped brings people together. Here are some skills for getting the help you need:
- Make your requests specific, not open-ended. For example, “Could you help me move about 10 boxes to my new apartment Saturday afternoon?” not “Could you help me move?”
- Have as many potential helpers as you can to divide the work. That way you won’t burn out one person, who is usually a loved one.
- Pay people back by thanking them sincerely, doing things for them, or listening to them (a much-needed service), or by “paying it forward,” or doing things for others who are less fortunate.
4. Be Assertive
People aren’t mind readers. If you don’t tell them what you want, they won’t know. Practice saying what you mean, especially when you mean “no.”
June Shafer, a 60-year-old retiree in San Francisco, says, “I used to think if I said no, people would be mad at me, which scared me. Other times I thought saying no would hurt their feelings. Now I realize neither of those is true. Most people take no for an answer quite well.”
A good thing about MS is you can always blame it for not letting you do what you don’t want to do anyway. Don’t be afraid to use the MS card, but you might also offer an alternative, such as “I’m not up to going to a movie tonight, but could we go Tuesday?” (Or suggest doing something else you’d rather do.)
Learn to set limits on good things, too. It’s better to go home early from a party than to need the next three days in bed to recover.
5. See the Positive
Practice noticing positives and giving thanks for them. Rick McIntire, a retiree living in Contra Costa County, California, loves gardening, but he needs a power chair for mobility.
“I created garden paths wide enough for the wheelchair,” he says. “I can reach certain areas. Where a healthy person could have a sprawling garden, I have certain areas that I can use. I grow flowers and give them away. It feels good to be sharing something beautiful. It helps me emotionally to focus on the activity instead of all the negatives in the world.”
6. Find Ways to Relax
Living with MS is stressful. Relaxation helps. Why not try:
- Meditation or prayer
- Taking naps
- Living one day at a time (or one hour at a time)
- Listening to music
- Playing with animals — Grund credits her dogs and cats for keeping her sane.
- Spending time in nature, just observing
You can live a good life — even a beautiful life — with MS. It’s not easy, but with a good skill set, you can rise to the challenge.