A typical “MS” day
A student, who was doing a presentation on MS for one of her classes in Occupational Therapy, asked if I could write up a little something she could read to the class that described a typical day with MS. This is the letter I wrote to her class:
Hello, My name is Marie.
I was asked to write about a typical day with MS. As I sat contemplating what it was I wanted to say, it made me realize just how much people without MS don’t understand about the disease. There is no typical day with MS. Everyday is a different set of challenges and fears. One day you wake up feeling great and have energy to accomplish everything you set out to do that day. Other days you wake up feeling great, get one item on your list accomplished, and then become so exhausted your whole body turns numb and you barely have the strength to lift your arms or legs for the rest of the day. Then there are the days you wake up exhausted and unable to lift your limbs and just remain defeated the entire day.
In addition to the exhaustion associated with MS, which is different from being tired, there is the fear of exacerbations. Exacerbations, or flares, are when the nerves for specific functions are being attacked. Thus far in my 3 years of being diagnosed with MS, I have lost feeling in both my legs for over a week, vision in my left eye for 3 months, and I have permanently lost 90% of my hearing in both of my ears (hearing loss with MS is exceptionally rare according to my Neurologist, lucky me). Everyday hovering over you is the fear of having a flare. Will I loose my ability to walk again? Will I loose my vision again? Will I have to wear a diaper because I will loose control of my bladder or bowels? Will I loose my hands? It’s always there, hovering. You know it will happen again eventually. Will today be the day?
There are also the little daily inconveniences that no one else sees or understands. I forget words, I can’t put sentences together coherently and it becomes incredibly frustrating. I know what I mean to say, I just can’t say it! I drop things all the time and run into corners, walls, tables, etc. I can no longer go up or down stairs without fearing I may fall, or trip. I believe I am stepping correctly,lifting my leg high enough to get to the next step. I feel like I am grasping something off the counter strongly enough to lift it up all the way, but I am not. My brain tells me I am doing it right, but my body is not complying. I have also become mildly incontinent over the last 3 years. I cannot control my bladder when I sneeze or cough. Feeling the need to sneeze or cough in public can put me in a momentary panic. Such small details of everyday life that go unnoticed by the rest of the world, but are in stark focus for me.
I sound like your typical 65 year old woman don’t I? Can’t remember anymore, needs glasses and hearing aids, incontinent, has to move slow and carefully for fear of falling, uses a walking stick for support, needs a nap in the middle of the day… Yes, typical 65 year old woman type stuff. Does it make a difference when I tell you I am 32? That I have a 5 year old daughter? My MS ages me 5 years for every one that passes. In the last 4 years my body has lost 20 years of life.
What is a typical day with MS? A typical day is doing your best to push away the fear, anxiety, frustration, and anger. A typical day is putting on a smile and telling your daughter how smart and amazing she is, as she prattles on about her day in kindergarten, when all you really want to do is lay down and rest. A typical day is trying not to feel the guilt of not having your family’s clothes clean for work and school, because you just didn’t have the energy to get the laundry done. A typical day is finding moments of joy whenever you can because you know that the years ahead are going to be dark and bitter. A typical day with MS is an emotional and physical battle that no one else will ever be able to see or understand. It is knowing that you alone have to decide to soldier on, or give up.
“You don’t know how strong you are, until being strong is the only choice you have.” ~MS Awareness