Life Is a Little Better This Week

(Photo credit: Wikipedia)

On the whole, things get more difficult over time with progressive MS. But once in a while we stumble upon a new device, or a new procedure, which at least temporarily makes things better. That’s what happened this week.

Here’s some background. For many years, I have had to pee once or (occasionally) twice in the middle of the night. That was no big deal, until my legs stopped working. At first I would use whatever mobility devices I needed in order to help me get from the bed to the toilet.

A few years ago, instead of dragging my sorry ass all the way to the bathroom, I began to sit up on the side of the bed and empty my bladder into a hard plastic, portable urinal. I would then swing my feet back up into the bed, and fall asleep. In the morning, I would empty the urinal into the toilet. That was so much easier, and it made my life better. But it didn’t last.

Eventually I began to lose the ability to swing my feet back up into bed without some assistance. This meant that every time I emptied my bladder in the middle of the night, I had to wake up Kim so that she could lift my feet back up into the bed. This was our standard procedure from about 12 months ago until about 6 months ago. Then, it also became difficult for me to execute the first portion of this maneuver, getting my feet off the bed and sitting up without assistance. I would have to wake Kim to help me both before and after I emptied my bladder. Between her two tasks, she would sometimes use the bathroom herself. Other times she would crawl back into bed for a short time. Once in a while she would just stand there and stare at me, silently inferring, “Hurry up. It’s the middle of the night, you know.”

I worried about how I would manage if Kim wasn’t next to me some night. But more importantly, and more urgently, I worried about her ability to get a good night’s sleep. Once she expended the physical effort associated with helping me, Kim’s sleep pattern was significantly interrupted. She felt tired the next day. I felt guilty.

I knew that some men were able to use a urinal while lying in bed. I just couldn’t figure it out. The biggest challenge was that water, or pee for that matter, runs only downhill, never uphill. So I obviously couldn’t empty my bladder into a urinal if I was lying flat on my back. If I rolled on my side I sunk down quite far in the mattress, so far in fact that if I stuck a hard plastic urinal against myself I was asking water to run uphill. I very much wanted to find a way to make it work, but I couldn’t, until last week.

Once a year or so I bring in my favorite occupational therapist, Maren, to help me figure out new and creative ways to accomplish everyday tasks after a year’s worth of disease progression. Last week was one of those times. We talked about a lot of things, and eventually the subject of nighttime urination came up. We tossed around a bunch of ideas, and that night I gave it a try, very much afraid that if I screwed up it could be messy.

By using a particular kind of soft, flexible urinal, and positioning my body only partially lying on my side, and elevating my upper body a certain amount using the hospital bed features that I have, it worked! Now, for the last week or so, I’m able to empty my bladder without getting out of bed or even sitting up on the side of the bed. That makes it easier for me to get back to sleep. More importantly, Kim is able to snooze right through my nocturnal activities, like she used to years ago.

I’m sorry for subjecting you to a discussion of bodily fluids. But this minor procedural change represents a meaningful improvement in our lives, leaving us happier, more well-rested, and more likely to be awesome each and every day.