When you can’t walk, a simple middle-of-the-night trip to the bathroom is anything but.
By Mona Sen For My Health Story Fact Checked
For you to understand my plight, I tell you stories of things that happen to me. I think most people don’t understand the small challenges I face every day, which are due to having secondary-progressive multiple sclerosis (SPMS), but on the other hand, to be fair, many people are worse off than I am. Nobody realizes this more than me. There are people in worse shape than me.
I will take this opportunity to describe to you how something quite simple became very complicated and scary.
At 3:00 a.m. the other day, I woke up from a dead sleep. I fumbled around trying to get my bearings. My body was alerting me that I had to go to the bathroom quickly. Is this normal? At 3:00 a.m.? Because I have neurogenic bowel — loss of normal bowel function due to nerve damage from MS — rather than me telling my body what to do, it tells me.
If I could have walked, I would have simply gone to the toilet, and after I was done, I would have simply gotten back in bed. But it was not so simple for me. I basically did not sleep from 3:00 a.m. on.
I Needed to Make a Plan as Quickly as Possible
Because my body was telling me that I had to get to the toilet quickly, I had to figure out how to do that as rapidly as possible. I had to remember that falling on my way to the bathroom, or in the bathroom, was a real possibility, and I had to realize that I was entirely on my own. David, my care partner, was upstairs and couldn’t easily be aroused at that hour.
Calmly, I had to figure out how to start. Mind you, my insides would not stop telling me to hurry up. This was making me anxious on top of everything else I had to do. I kept picturing what would happen if I did not make it to the toilet in time.
First, I Maneuvered My Body Into My Wheelchair
I finally felt a little more centered. What I had to do was bring the wheelchair up to my feet. This is very difficult to do when your legs are not cooperating. My legs would not bend and were sticking straight out. I usually give them some warning before asking them to bend, but there was no time for that. Things took a little while, but I was at last able to get the legs to cooperate.
Under all this pressure, I realized that shifting into my wheelchair was easier than using the bar on my bed and pushing up. I made it! I didn’t fall and was safely in the chair. My body was desperate at this point. Wow, nothing seemed normal or what I was used to. I kept thinking: “One step at a time.”
Oh, I was close to the toilet, so half the battle was over.
What I am letting you know is that I never gave up, and I gave it everything I could. SPMS poses challenges that are not the same as those posed by relapsing-remitting MS. All the actions I take at this stage of the disease are much slower. So I have to allow more time and not expect anything I want to do, such as transferring from bed to wheelchair or wheelchair to toilet, to work perfectly. In this stage of MS, I have to also think about falls and how they can happen without warning.
Then I Navigated Getting Onto and Off the Toilet
I was one step away from my destination, the toilet. Now I had to implement a different set of rules by calming down the legs, grabbing the bar in front of me, and aiming for the toilet in a way that would land me not too far back.
Unfortunately, I did end up too far back. But I didn’t worry about that, because I had achieved my primary goal of at least getting onto the toilet.
Mission accomplished, I took a breath and figured out how to get off the toilet. One thing was for sure: I had to keep moving forward. Getting off the toilet happened, but there was a final step: getting back in bed.
Last Hurdle: Getting Back in Bed
Once the emergency was over, there was the last hurdle of reversing course and lining up the wheelchair with the bed so I could hop onto the bed, holding onto my rail. I needed to keep my wits about me. I sat there and thought about the next move. At this point, my mind and body were tired. I was feeling this, so I needed to hurry up.
Everything went as planned and I was sitting on the bed. Now all I had to do was get my legs up on the bed, but this was no easy task since I was exhausted. I couldn’t do it. I just pulled my comforter over me and left my feet on the ground. I closed my eyes and thought for a while and came up with a plan. What if I pulled the wheelchair close to me and put my legs on the seat? Once I regained a little strength, that is exactly what I did. I slowly got the compromised left leg on the chair. Whew!
I Count This as a Success
The next morning, David found me lying like that — half on the bed, half on the chair — and didn’t quite know what to think. I asked him to put my legs on the bed and zoned out for about an hour.
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