Mind & Spirit

What it's like to live with multiple sclerosis

What it's like to live with multiple sclerosis

Courtesy of Michelle Wilda Image by: Courtesy of Michelle Wilda Author: Canadian Living

Mind & Spirit

What it's like to live with multiple sclerosis

Michelle Wilda was a 30-year-old home-care worker when she woke up one day to a numbness in her left foot that gradually grew all the way to her chest. A few days and many tests later, she was diagnosed with multiple sclerosis (MS), a disease that weakened her muscles, impaired her memory and caused memory loss. Now 43, Michelle tells us how the diagnosis has changed life for her and her husband in Semans, Sask., what she's done to cope, and how friends and family can make all the difference.

Canadian Living: What was it like when you were first diagnosed?

Michelle Wilda: I was scared. Working in the health-care field, I saw worst-case scenarios. I regularly saw people who weren't able to walk, weren't able to feed themselves. Then I decided, I'm not going to have a pity party and feel sorry for myself. I've got to ask questions and figure out what to do. So when I was in the hospital, I think I called anyone and everyone that knew anything about MS. I went to the MS Society, I went to the MS clinic and I talked to nutritionists to learn more.

CL: How did MS affect your life and your family?

MW: It definitely made my husband, Larry, and I make a lot of changes in our lives. When I was diagnosed, I was in a 30-year-old world—two jobs, running around, doing everything. When I came home from the hospital, we had a wheelchair ramp, we had bars in the bathroom—those kind of changes, so that I could actually manage life on my own. I've been from a wheelchair to a walker to a cane in these last 13 years. I had to leave my job. I've since worked two different jobs, but I still have had relapses and flare-ups. Larry is my rock. He's become my biggest advocate, my caregiver, sometimes my chauffeur—but when I'm feeling well, he's my husband.

CL: What's a flare-up like?

MW: I can feel it when it comes now. I go numb up to about my chest, so that usually puts me back into a wheelchair. My speech gets slurred. My vision gets blurry. It's like when you wear boots 10 sizes too big and you're trying to walk. It's like having oven mitts on your hands and fuzzy glasses on. It can last a few weeks or a few months. I usually have to do MS therapy and I get better, but there's a lot of emotional stuff that comes with it. You think of all these things you can't do, but you do what you've got to do.

CL: What's the medication like?

MW: I'm on medication continuously—a pill every day—and then when I have a flare-up, I go on an IV medication for five days. It takes a long time to find a medication that works for you. It's very frustrating, but I'm fortunate that I have a really good health-care team working with me. I ask questions and say, "This is what's happening with me. I don't like it. What else is there to help me?" You have to be proactive. There are so many different things out there that can help. I had to try a whole bunch of different things, but you can't quit; you need to keep trying.

CL: What have you learned through all this?

MW: I've learned what medication works for me. I've learned what my stressors are. You have to learn it all the hard way. At first, when I was feeling good I would try to do too much. Now, I know my limits and I'm trying to stick to my limits so I can have a good day every day, not just peaks and valleys. And in our house, we now try to "share the wealth." I don't just give Larry all the bad stuff. I share it with friends so it's not all his burden.

CL: Is there anything you would do differently?

MW: Looking back on it, I would probably let friends and family in a little quicker so they could see what MS looks like in our world. When I'm in the house, I'm not able to walk or talk, so when I go outside of the house, I look like I'm doing well. Inside, you're raging a war that no one can see. I've learned in the past 13 years that asking for help is not a weakness—it's actually a strength. I used to think it was admitting "I can't do this," but you have to be the strongest person in the world to ask for help.

CL: What good times have you had since your diagnosis?

MW: I've owned two businesses. I got married. We've gone to Sweden, Mexico and Cuba. I've done so much. We've had a lot of successes in our lives. We've done really well with life—our life with MS. We go camping. We go to concerts. I'm able to do all of these things; I just have to be smart about it.

Walk for multiple sclerosis

CL: When you were first diagnosed, did your family or friends do anything that really made a difference?

In the first three years, I thought I was superwoman so I made everything look really good. Then a friend of mine, who also had MS, came to me and said, "What are you doing?" She basically kicked my butt and said, "You need to get involved." I started to volunteer with the MS Society. I went to an MS walk. It was the scariest thing I've ever done, because it was admitting to the world that I had MS. But it was amazing. Our family and friends got together and formed a group called Michelle's Angels, and we walked and raised money. Friends and family are just waiting to help and they don't know how. That's how we fought back.

CL: What can people do to help when you're not feeling well?

MW: When I'm not doing well, I still need a voice from the outside world to tell me what's going on. When I'm home, sometimes I don't hear from anyone, and that's when that outside voice means the world to me. We live in a very small town. People will just come in and give me a hug—it's that human contact. A lot of people don't know what to do, and the biggest thing is just to treat me like a normal person.

CL: What gives you hope?

MW: My fabulous support system. When I hear that voice saying, "You got this," that gives me hope. Knowing that there is so much research and so many people out there fighting to find a cure for us, that gives me hope. I'm just thankful that someone's out there wanting to find a cure for this. I know that eventually there will be a cure, but right now I have MS—but MS doesn't have me.

Did you know there are seven factors that can help you survive life's toughest challenges? Learn to become a stronger, more resilient person


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Mind & Spirit

What it's like to live with multiple sclerosis