Can you imagine peeing yourself seven times in one day?
Changing your clothes each time to include shoes and socks but only after giving yourself a thorough cleaning or maybe even a full shower if you have the time?
And, if you wear an AFO, there is a frustrating amount of time and ridiculously upsetting gymnastics of removing said shoe and socks and AFO in order to remove said articles of soiled clothing so that you can begin the humiliating chore of scrubbing the bathroom floor before starting the arduous task of washing multiple loads of clothing. You learn to just allow the pissy clothes to marinate to spread out the amount of laundry you do.
Now that you’ve probably exhausted your limited selection of clean clothes, it’s time to prepare the family meal which you’re too emotionally exhausted to eat.
Of course, the day ends with another shower because the thought of getting into bed bearing any trace of urine is disgusting. And the shower helps you believe none of that stuff ever happened. Ah, good ol' denial.
Maybe, no, hopefully, tomorrow will be another day with positive thoughts and outcomes.
Upon arising the next morning, imagine that you feel a consistent inner trembling that surely indicates a symptom of what this day promises to be an equally bad MS day.
But, oh no, it is not equal to the horrors of the day before. Today will be worse, far worse. Today is not a day of incontinence. Today is the day of uncontrollable tremors and loss of balance, the result of which is a result of multiple falls, stumbles, and tumbles. Then the trembles increase to the point of upsetting an entire bowl of minestrone soup all over the living room carpet, nearby chair, the coffee table and laptop computer.
As you know Minestrone is a tomato-based soup full of vegetables and rigatoni.
Before you can even think of continuing your meal, there is the chore of cleaning up your mess. You crawl around on the floor handpicking chunks of the solid portions that should not be sucked into the vacuum, all the while crying in self-pity, resulting in a severe round of an anxiety attack that cannot be controlled with deep breathing.
Imagine that when you attempt to stand but your legs totally fail to support your body weight until you find yourself prone in the middle of the mess that will surely require the attention of the carpet shampoo-er, which s located down a flight of stairs into the basement.
There is NO way you can possibly attempt to manipulate those seventeen steps and retrieve that awkward cleaning machine. A request for assistance IS imperative.
Imagine sitting in a puddle the mixture of urine and vomit-smelling soup, sobbing hysterically while trying to breathe, and knowing that any assistance, physical and/or emotional, is up to you.
Imagine the defeat the next day when you stupidly apologize about the previous day's theatrics but don't receive any type of encouragement or well-meaning lies that it will be okay.
Just a little affirmation goes a long way.
Imagine waking on day three and feeling on top of the world besides enough residual numbness to not allow typing or holding a pen; thus, the lateness of this post.
Imagine the loneliness of existing on Planet MS.
Some of you don't have to imagine.
Some of us live it every day.
Sorry for being a downer. Just wanted to share a reality. Most of the time I manage to keep my negative private.
Have a good week,
Lisa, Lady with the Cane
P.S. Te carpet's still wet from the threefold cleaning, but there are still tomato sauce stains apparent. Any good suggestions for removal are appreciated.