Those of us using walking aids, wheelchairs and braces for some reason are seen as broken and a burden. We move much too slow, drop things way too easily and need help way too often with even the simplest of tasks for most people to bear.
It’s not easy living with a chronic progressive illness as you already know. Days can be so unpredictable and the limitations we experience can become overwhelming and heartbreaking. No amount of ignoring it, hiding it, or pretending it isn’t there is going to make it all go away.
You may see pictures of me smiling, but the truth is my nights are also spent crying. That’s right, MS isn’t the smiling face you see in those brochures or the victorious athlete crossing the finish line in those advertisements.
How do you balance a life that is constantly changing and where the unexpected is more expected than the chance of rain in today’s weather forecast? Each day with MS is an irregular experience filled with obstacles and booby traps. How do you balance a life like that?
Life with MS has a way of changing up on us. It doesn’t go as planned no matter how hard we try to force it to. And sometimes we try really hard.
Welcome the day and hang in there moving little by little until you’re able to push through the pain, tremors, muscle weakness and even the negative thoughts that have a tendency to show up out of nowhere.
MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just say to MS, “Get lost.”
I lose words more than I lose my car keys…and they’re harder to find too. I think conversations with me are more like a game of charades than actual conversations. I’m sure it frustrates those I’m talking too as they try guessing the word I’m fumbling around in search of. It can become quite comical too as I point, make hand motions and slap my leg in an attempt to help the process along.
Do you ever feel weird? Like you are not normal…if there is such a thing? I know I sure do. I tend to think differently than most people. I find humor in just about everything. If you hung out with me, you would find me laughing at dropping my plate full of food on the floor, joking about falling over while sitting and putting on my socks, and giggling because I lost my keys for the hundred-millionth time.
Living with multiple sclerosis isn’t as easy as some people make it seem. It’s not like I can will my body into behaving or talk my muscles into working. Mine seem to have revolted all on their own.
1. Simplify your life.