People don’t seem to understand how weak and exhausted my body is at every moment of every day. I must wear this smile on my face really well. It definitely covers up the daily struggle of living with a chronic illness. Sometimes I think my smile is the only thing that’s keeping me together; that if it should fall off, I’d fall apart too. Somehow I get through my day with my smile in place…exhausted, weary and worn out, but still smiling.
For me, I’m in bed by 7 PM each night and I have to say, by that time I’m so weak that it’s a struggle to transfer from my wheelchair to the bed. You’d think getting to bed early would be a good thing, right?! But no matter how early I go to bed, I never get true productive sleep due to pain, muscle spasms, breathing difficulties and an overactive nighttime brain.
I seem to drift off for a few hours at a time and by morning, I’m exhausted just trying to sleep. I think I get a workout in the middle of the night. I’m not fighting MS only while I’m awake, but while I’m sleeping too. Who wouldn’t be exhausted fighting non-stop without a break? I can’t remember a time I woke up in the morning feeling refreshed and ready to conquer the day. Those days are long gone.
Morning comes and I wish there was a way to stop time so that I could have another 10 hours to try and actually rest. But time never stops, the day keeps going and I have to keep going with it.
It used to irritate me when healthy people would talk about feeling rested and how I just need to follow their magic routine and I’d wake up rested too. I’d try to explain that my body doesn’t work that way but few actually understood that concept. Many would look at me as if I was an alien from some far away distant planet.
I discovered that Multiple Sclerosis messes with people’s thinking. That it doesn’t fit so neatly in their box of understanding. They reject my reality because they can’t physically see the disease that I’m living with and the destruction taking place inside my body.
I’m thankful for those who get it. If my talking about a life with MS increases the awareness of this disease in just one person’s life, then I’ve accomplished something great. My dream is for the awareness of Multiple Sclerosis to become as wide spread as cancer awareness is. I don’t know how long it will take for that to happen, but each day is a chance to open people’s eyes.
You know, even though times gets tough, you will always see me smiling. It’s important to find something in this messy world we are living in that makes your heart happy, that makes you smile. At this very moment in your life, no matter how hard things may be or how much you may be hurting, pause and find that one thing that makes you smile.
Hold onto that thought, person, thing, or belief, then wipe your tears, take a deep breath, and smile your way through. Yes, your body is weak, but you are so much stronger than you think yourself to be. You are going to make it and in the process, you will help expand people’s understanding of life with a chronic disease. You will be a part of bringing awareness to the world.