One day during our weekly mother-daughter chat session, Mom mentioned how nonmechanical my father and brother always were. Then she added that I have had to “learn” to become creative (to her creative and mechanical are interchangeable).
The more I listened, the more I became convinced that after all my chatter over almost four decades with multiple sclerosis (MS), my mother has come to admire my ability to create ways to deal with the seemingly hopeless situation that I find myself in.
Not only do I find solutions to problems that I am faced with, but I also figure out safe ways to implement my solution a few different ways, depending on my physical and emotional state at any given time. Something that is easy to forget is that a solution that worked once might not be successful again.
How I Descend the Stairs With Foot Drop
One of my favorite examples is how I’ve learned to come down the stairs, so that it is safe and I am comfortable doing it. I have the onerous symptom known as foot drop, which causes numerous safety concerns. My left foot with foot drop is basically a paralyzed leg from the knee down. Oh, and that leg also has severe spasticity and clonus. The way I look at it, my left leg is not a helper but a hindrance. I try not to complain too much about it, but I do anyway, because I can’t help it.
A home addition project now in progress will spare me from needing to use the stairs, but for now, to get from my bedroom to the rest of the house, that’s what I need to do.
Like every similar challenge I face, I try to work out at least three ways of doing the task, so that if one way is not successful, I have other options.
Stairs are particularly scary, so I spent time looking over the staircase and what was possible within my ability to somehow get both feet on the step, at the top of the staircase. Once I get my feet planted on a step, I can use both railings to turn around and go down the steps, one at a time, backwards.
Before I really thought about it, I would just slide the left leg in the air so it landed on the step. This didn’t work all the time. So now I have to figure out how to get that left leg on the step before the right leg follows. I’m still working on this, using a brace, straps and whatever else I can include in this venture.
Techniques for Getting Into and Out of a High Bed
There is a day bed downstairs that I sleep on when I don’t feel like climbing the stairs. Lately, I find myself using this bed more and more.
Getting into and out of this bed without much “drama” is something I have to do every night. The bed has dimensions that are smaller than a regular twin bed. I got a new memory foam mattress for the bed. I decided to buy a 10-inch mattress instead of my usual 8-inch.
What I discovered were two things: It is definitely easier to get off the bed than onto it, but there are dangers there, too. I’m not sure the mattress height makes much difference. Ten inches is higher than eight, but my technique for getting on and off is what is more important. I continue to work on my technique, since it is not a constant.
I have to keep my bed and mattress, because this will be my bed in the new room currently being built. I do love my new mattress, because I sleep well on it. I just have to come up with a safe solution to get on and off the bed without using all my energy.
Today I figured out what I need, and unfortunately, I cannot make it myself. I found a stool, but it is a foot high, too much to safely step on. I had to spend about $30 to find a stool with an attached bar. It should get here next week. I am pretty sure the new solution will work.
Since I have lost all balance, I have also figured out how to get off my wheelchair, holding a window seat to then grab the bar (which looks solid) on the stool. A nine-inch rise should have me sitting on the bed, and then I will work out a comfortable way to get both legs on. Then getting off the bed will be done similarly without slipping, with my wheelchair close by to get in.
Self-Knowledge Is Key to Finding Solutions That Work
I really can see why MS is complicated for others to understand. Only I understand my needs best. For example, both of my legs are compromised, so even if I stand with little movement on a carpet, there is a danger of my slipping.
I am sure that many able-bodied persons tend to lump everyone with a disability into one pot. Why not? It is simpler that way.
But not only is someone with MS not like everyone else, they are also different from another person with MS. For example, someone else with MS may be able to handle taking the stairs “normally,” but my legs are different from their legs and cannot do certain things.
The way I approach complex disability issues is to know myself best and to not take personally misunderstandings that others may confront me with.
No matter how others see me, I need to celebrate the fact that my problem-solving approach to my MS-related deficits has led me to discover the tools and techniques I need to surmount them. Definitely a skill I never knew I had!