Growing up, my mom was healthy and energetic. I remember many days of crafting, baking, walking, shopping, and playing together. However, it was different with my dad, he had multiple sclerosis (MS).
One of my most vivid memories was when I was 15 and went to visit him on the west coast. It was then that I saw just how much his MS had progressed to the point where he had to walk with a cane and take frequent rests on steps and benches as we toured around Vancouver. He wanted so badly to show me a good time. He must have been exhausted in a way I can only imagine, but he was willing to do it because he was my dad.
Being a parent with MS is not easy, but with a positive outlook, it can be done.
I recently had the chance to speak with Calgary mom, Amanda Fuller, who has been living with MS since 2009.
Amanda was diagnosed at age 29, after worsening eye pain led to an MRI that revealed tissue damage to some areas of her brain. At first, Amanda says she felt some relief to know the reason for her pain, but then it hit her, “Oh my God, I have this incurable disease.” She was young and a freshly minted mother of two; her youngest only 2-years-old when she received her diagnosis.
Amanda suffers from relapsing-remitting MS, the only form of MS for which treatment exists today. As a Canadian woman, the odds were stacked against her. In fact, Canada has one of the highest prevalence rates of MS in the world:1
In relapsing-remitting MS, symptoms tend to go into remission for short periods of time—the “good days,” as Amanda describes them—and then they return with a vengeance. Each relapse seems to intensify and expand the symptoms—and they can hit without warning. Amanda says she might be fine one day, and then wake up the next day with pain, fatigue, and limited control of her muscles.
Amanda hates to say “no” to her kids but she has learned being a full-time parent with the symptoms of MS is a lesson in learning to say no. She wakes some mornings and hates her life. She hates the back and leg spasms. She hates the pins and needles that Just. Don’t. Stop. She hates the debilitating headaches. She hates the fatigue that is sometimes so intense she has to spend days in bed. She hates the fear she might lose her balance while carrying things, or while on the stairs. She hates the fact that she can’t eat without others around for fear her swallowing reflex will falter.
But she doesn’t have time to feel sorry for herself. She is too busy just living her life and being the best parent and wife she can be.
She relies on her husband to be her sounding board and to provide the muscle for household tasks. She also relies on her kids, now 7 and 15, to pull up the slack on those days where her symptoms are raging—more than most kids their age. Gracie, 7, can be found on the bed next to mommy on Amanda’s bad days. Ty, 15, understands his mother's experience in a very adult way and reassures her that she is a good mom. We all need that reassurance from time to time, don't we?
Amanda says going to the gym keeps her sane. “Every day is different,” she explains. If she feels good she does some free weights, and she walks on the treadmill since her balance issues make running unsafe these days. We could all take a page from Amanda and hit the gym (or the trail, or the pool) every day to simply put into it whatever we can that day. Without guilt, self-judgment or disappointment. Without waiting for the perfect opportunity. Or the perfect mood. Or the perfect day.
For now, she opens her eyes in the morning and stretches, as we all do, but then takes a mental inventory of how she feels that day. On a good day, Amanda loves to bake and is known for her chocolate cake. Her husband knows she’s been feeling great when he arrives home to muffins. She fondly remembers a fantastic day last summer when she hiked in the sun with a friend and went out for dinner.
Today, 5 years after her diagnosis, Amanda is a positive, practical woman. She and her doctors have recently found a new medication that eases her symptoms, a pill that has replaced the years of daily self-injections she once suffered through (speak to your doctor about all available treatment options available to you). Amanda is an inspiration. She is optimistic about recent research in the field of MS treatments and believes there will be a cure sometime soon.
As Amanda wisely told me, you don’t get through motherhood with MS, and life in general, by feeling sorry for yourself. Whatever matters to you, you must “Go do it while you can. Today is today,” she encourages. You never know what tomorrow might bring. None of us do, so make today filled with chocolate cake and hiking.
Because you can.
For more details about the information included above please visit: MS Society of Canada.