What It Feels Like When Your Abilities Change From Multiple Sclerosis
When you live with a disease that’s as impactful as multiple sclerosis (MS), you constantly wonder if each event will be your last of that kind. Will this be my last time walking to the park at the end of the street? Will this be my final time participating in my son’s birthday party? Will today be the last time I stand for a shower without having to sit? Will this be my last time food shopping independently for my family? The list could go on forever.
With a determination to be independent, you learn to push yourself past your limits. You learn to accept new levels of normal and find new ways to reach the same goals. And as you push yourself to run errands, to clean the house, to attend your children’s school functions, you struggle to reach the finish line and you wonder if this might be the last time you’re able to make it happen.
The struggle is a matter of what your body can and cannot do; not a matter of discomfort or pain. We ignore the pain. We get used to the discomfort. But our ability levels diminish and we cannot find ways to make our bodies complete the task. We try to explain to others that we would be willing to complete the task or attend the event no matter how great the pain or discomfort levels were; if only we could. I would love to come shopping with you, but the amount of walking it requires just isn’t something my body is capable of. As the saying goes, the struggle is real. It is an absolute limitation of our body’s functioning.
Diseases like MS are unpredictable and they worsen as you work tirelessly against the grain. You wake up one day and suddenly realize you’re a little worse than you were a year ago; despite the medicine, despite the exercise, despite the healthy diet and despite your positive thinking.
You can live your life doing everything the right way and this disease can still strip away your abilities one by one. It’s easy for an onlooker to say don’t dwell on things you cannot control. But these things affect our families ability to stay afloat and they limit our life experience. We need a new way to get groceries. We need further income to pay someone to clean our home. We need a gentle way to explain to our children, yet again, why we cannot be present at their school function. It doesn’t end here. It never ends.
When you live with a disease that impacts your daily life, you are constantly facing challenges that can change from day to day. It’s sad, it’s depressing, and it strips away your confidence.
But I want you to know that even though no one else in your circle is living with these barriers, there are so many people just like you. We all wake up each morning wondering what we’ll be capable of. We all go to bed each night wondering if we experienced a last today. We can keep going, no matter what that looks like.
It means living. It means waking up and facing the day. It means knowing you have mental strength you never would have had if it weren’t for this disease. It means problem solving and asking for help.
It’s not easy and it’s certainly not ideal. But, we can choose to wake up and live with the abilities we have knowing that there’s a large group of us, all around the world, all doing this together.
Getty image by arata
Lindsay Karp is a writer residing in the suburbs of Philadelphia with her husband and two sons. She writes about her long diagnostic journey and life with multiple sclerosis (MS) as well as parenting and other aspects of her life. She has recently entered the world of patient advocacy to help others living with MS and those who remain undiagnosed, as she did for many years. Lindsay is an aspiring published children’s book author and is working on a memoir of her 13 year diagnostic journey. Follow Lindsay's publications on Twitter: @karplindsay
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