How to Live Well with MS

 Living with MS can be a challenge. With knowledge and support, a good quality of life can be achieved. Find out how MS patient Jo-Anne Howe manages the different ways MS affects her life.

How are you doing with MS?

Wellness is a dynamic state of physical, emotional, spiritual, and social well-being that everyone strives for. Wellness can be achieved even when you are living with a chronic illness or disability. Even though MS is a chronic disease, there are many things you can do to live a satisfying life — that’s Jo- Anne Howe’s experience

More than fifteen years have passed, but Howe remembers the exact date of her MS diagnosis back on March 14, 1994. She knows now that her experience with the disease is not unusual. “I knew something was wrong…I had symptoms for several years before I was diagnosed.” These days, MS is more likely to be diagnosed earlier, and there are many more options available to help people with MS have a good quality of life.

Re-think your priorities

What really matters to you? Getting your priorities clear is the first and most essential step toward achieving a well- balanced life. The important part is acknowledging what you want your priorities to be, not what you think they should be.

Sometimes it is a  matter of sitting down and listing those priorities. They may revolve around relationships with family and  friends, hobbies    and physical  activities, keeping yourself and your family healthy, and practicing your faith. These can take on heightened importance when you  factor in living with a chronic illness and the unpredictability of a disease like multiple sclerosis.

Manage fatigue

Fatigue is a huge issue in MS, affecting 90% of people living with a diagnosis  of MS. “Different types of fatigue can occur with MS such as reduced muscle endurance or an overwhelming tiredness despite a good night’s sleep,” notes Jo-Anne. Managing fatigue requires that you regularly recharge your batteries, physically and emotionally. You can  increase your resistance to fatigue by eating well, staying hydrated, and getting regular exercise, bearing in mind that every bit of activity counts.

Although fatigue is a significant symptom of MS, there are things you can do to reduce it:

• Get some exercise. Studies have shown that it plays a role in reducing fatigue.
• Plan physical activity in the morning and try not to over- schedule your day.
• Pace yourself. Short breaks or naps during the day can help.
• Re-evaluate your sleep quality. Try to ensure that you get six to eight hours of uninterrupted sleep every night.

Many people with MS can have treatable sleep disorders such as difficulty falling asleep, restless legs, or airway problems. For example, a  treatable condition called obstructive sleep apnea may affect people who snore during sleep, causing them to stop breathing routinely throughout the night.

If the fatigue is significantly interfering with your life, discuss your symptoms and possible causes with your doctor; there are some good    medication options that can help.

Stay active

Managing fatigue through proper diet and exercise is an important part of feeling well physically.  Do what you can to look after yourself physically by getting  exercise when you can, eating a healthy diet as highlighted in the Canada Food Guide, and knowing when to take a break and when to sit something out. Jo-Anne has an inside track on these measures — she is a clinical educator and physiotherapist at the Toronto Rehabilitation Institute (Toronto Rehab). She is also the developer of a program providing aerobics, strength, and flexibility exercises that are “safe and do-able" for people with MS.

When the 12-week exercise program was evaluated, participants reported generally feeling better, stronger, and had improved balance. The success of the group program gave rise to the Toronto Rehab’s DVD “It’s Your  Choice,” which guides you through a 15-45 minute workout; exercises are demonstrated by three individuals with MS and varying degrees of mobility. The DVD can be obtained through the MS Society of Canada.

Jo-Anne is familiar with the unpredictability of MS symptoms, and the extreme fatigue that can be overwhelming at times. Still, she says,  “Inactivity only makes you weaker — do what you can when you can. Try to maintain a regular program of activity. Listen to your body and gradually  increase the duration and intensity when you are ready. Adapt your level of activity when changes occur.” Sometimes it’s a matter of looking beyond your old routines and expectations.

For instance, several years ago Jo-Anne was forced to give up biking, an activity she really enjoyed. Then she learned about adult tricycles. “Now,  I can bike again with no worries about my balance. I love being able to cycle around my neighbourhood again.” In addition to programs developed especially for people with MS, suitable exercise programs are often offered by community centres, or rehab centres. Vary your  routine — do something different every day, if that works for you. WiiFit is another great option, Jo-Anne says, referring to Nintendo’s interactive gaming system.

Eat well

Eating healthy sounds simple — after all, there are no special diets required for MS — but when you’re busy and fatigued or in pain, preparing a healthy home-cooked meal can be a challenge. A high-fibre diet can  help with the digestive symptoms of MS, such as constipation. And eating regularly helps enhance your resistance to fatigue; it’s helpful to keep some quick high-protein snacks available, like hard-boiled eggs, a few nuts, or low-fat cheese. Vitamins and supplements are also a good idea; vitamin D and omega-3 unsaturated fats may be especially important for people with MS, research suggests.

Work with the pros

From the time of diagnosis onward, rehabilitation specialists provide education and treatment designed to promote good health and general conditioning, reduce fatigue, and help you feel and function at your best — at home and at work. If symptoms begin to interfere with everyday activities, a rehab team can address problems with mobility, dressing and personal care, role performance at home and work, and overall fitness. They also provide evaluation and treatment of speech and swallowing difficulties and problems with thinking and memory.

Deal with your feelings

Positive thoughts and feelings are important to your overall well-being. However, it’s also important to grieve your losses. There are things you may no longer be able to do. Acknowledging these changes is a key part of the grieving process that will help you to move forward with your life. The stress of being diagnosed and learning to live with a chronic illness can trigger psychological issues like depression and anxiety all on its own. But other factors can play a role, too. Be aware of the symptoms of depression, and how MS might be contributing to it.

For instance, some medications used for MS such as interferon and certain steroids may trigger or worsen depression or mood changes in some people. As well, multiple sclerosis has a direct impact on both the central nervous system and the brain  itself. If the disease attacks a part of the brain that affects or controls your emotions, depression and other psychological issues can result.

Be aware of any changes in your appetite, sleep patterns, activity level, and mood. Help is available, in the form of counselling and  medications. If stress seems to be an exacerbating factor in your emotional reactions, you might also consider such alternative treatments as massage therapy, meditation, acupuncture or muscle relaxation techniques. Talk with your doctor or someone close to you if you are affected by depression or anxiety.

Take control

When you are dealing with the unpredictability of MS symptoms, it can help to feel in control of  your existence as much as possible. How can you do that? By learning about the disease, making appropriate lifestyle  changes, and taking treatment to delay progression— in short, by accepting and integrating MS into your life.

It will be easier to maintain a sense of control in your life if you consciously adapt your life to accommodate MS. Work is important for  contributing to a sense of well-being for many people, but tasks may need to be adjusted according to your needs. For instance, Jo-Anne’s job has evolved to allow her to keep working despite the unpredictability of the disease. She now develops and evaluates programs  for people with neurological conditions, such as MS, rather than doing hands-on treatment. If you are finding it difficult to perform your usual tasks at work, you will benefit from the help of a rehabilitation specialist such as an occupational therapist. If your job situation is changing, it is important to stay positive and look for ways you can adapt. Ask yourself how your skills and interests might be used in other ways.

You may need to explore new activities. For instance, Jo-Anne suggests that an animal lover might benefit from getting involved with a volunteer-based animal organization. A teacher with MS who is unable to manage standing in front of the class five days per week might look into  volunteering or working part-time at a library in order to maintain a connection with children. It’s all about finding different interests and activities that you enjoy.

Communicate

Talk with your family; educate them so they can understand better and be more supportive. “My husband and son have been fantastic — my husband was  involved right from the beginning, and he learned a lot about MS — he recognizes how difficult my life can be at times, and gives me a lot of support,” says Jo-Anne.

“Social isolation can be a problem,” adds Jo-Anne. “Some relationships change, but new and different friendships develop based on your current lifestyle.” Reach out to those who share your faith — religious leaders and church communities can provide practical and emotional as well as spiritual support.

Support groups have a place

Often, others who have MS can steer you toward things you can do and help you consider all the possibilities. MS-related support groups can be very helpful, Jo-Anne notes. She suggests seeking out groups that have a positive focus and use a problem-solving approach. They can provide information
/education about MS as well as constructive strategies, rather than being  focused on complaining or self-pity.

People with MS who have experienced what you are going through often help with problem solving. For instance, they may be able to suggest strategies for holding a dinner party or travelling, without wearing yourself out, says Jo- Anne. “Showering was a problem for one man I  knew because of balance problems — when this came up in his MS group, the answer was as simple as putting a bath seat in the tub. You just have to begin to think outside the old box.”

About the MS Society of Canada

Last but not least, go to organizations of experts and people with MS who might share your needs or concerns. They are there to help you and those around you. The main, or primary, clients of the MS Society of Canada are people who have or may have MS, and their family, friends, and caregivers.

MS Society volunteers and staff also provide information and support to health professionals, employers, institutions, and those whose lives are impacted by multiple sclerosis. Based upon needs and available resources, the MS Society of Canada’s local chapters, divisions, and national office provide  client  services that encompass:

• Information and referral
• Supportive counselling
• Support and self-help groups
• Recreation and social programs
• Financial assistance
• Education
• Advocating for yourself

Contact the MS Society at  1-800-268-7582 or visit them at www.mssociety.ca.

Reach beyond your limits

Instead of thinking of MS as something you need to fight, work on incorporating the reality of MS into your life. Move beyond your old limits — reinvent yourself. With help and support, you can achieve wellness in your life with MS.