When you gotta go

man with top and derby cane in the PNW

Where’s the restroom?

There are so many symptoms with MS, that a bunch of them often get glanced over. The one that has been the most active for me lately is incontinence. The opposite of constipation, incontinence is where your bladder is going to empty NOW; with as little notice as possible. I never thought that at 31, I would be like my grandmother and know where every bathroom in the county is. It can be super frustrating when out of nowhere, you have to go. Basically, my bladder’s alarm doesn’t go off early enough.

Bowel and bladder problems are no stranger to the MS community. In my many years of talking with all sorts of folks diagnosed with MS, so many have shared my struggle. There is a special bond created when openly telling someone that you — a grown-ass, bill paying adult — has pissed your pants. Most likely in public. And they understand…because they have, too.  

Needless to say, hitting the road can be tricky; but we love to adventure so we make it work. My solution? An empty gallon jug in the car at all times. When it’s time to go, it’s time to go. There is no planning or waiting for the next gas station. 

To those who experience this: you are not alone. I, myself have pissed my pants walking down the sidewalk in Seattle; on the way to a doctors appointment, ironically. As embarrassing as that was (pee smells, folks), it almost feels worse when it happens at home. Ever had to drop a log in a dark gravel parking lot on Halloween? Yeah, me neither…*ahem*. I can guarantee these won’t be my only bathroom fail stories, and when I tell them I wear them like a badge of honor. The plus side is, I can go just about anywhere. 

I bet there’s a long list of medications that help with this sort of thing, but at what trade off? I would rather just work with what I’ve got…unless they produce something with side effects that make everything taste like pizza. Incontinence issues are just a small piece of the MS puzzle, but when you add them together it can be daunting. These are just a few on the so-called “invisible symptoms”. They just happen to be invisible because they are embarrassing as hell. 

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Published by Kellen

Born and raised in the pnw. Disabled in 2010 due to progressive Multiple Sclerosis. I started the Wheels & Red with my amazing wife Meg. Wheels & Red is a way for us to share our story with the world. Let's make this shit accessible.

6 thoughts on “When you gotta go

  1. Kellen,
    Thank you for posting this story. I know all too well the feeling of needing to go NOW. It’s a lonely feeling sometimes, thinking no one could possibly understand. Like the time I was driving home from work and pissed myself because there was nowhere to go, or waking your partner in the middle of the night to inform them that you just pissed the bed. I hate it but I find ways to get through and I cope with it much better now. Keep telling your story, I look forward to hearing about all your adventures. Take care brother.

    Chad

    Liked by 1 person

  2. Man… same here. And I thought I had a small bladder before MS! Heh, I thought I USED to have to pee a lot! Now it’s just silly. Plus, I’m horrified of public bathrooms and avoid ’em at all costs. But like you, I now know where all the public bathrooms are and which ones are cleaner than others. I kind of figured men had it easier due to the “go anywhere” factor, but reading this post, I think I’ve changed my mind. I’m with ya, brother. :\

    Like

  3. If you have retention issues, the bladder opening doesn’t relax and allow itself to fully empty so a full bladder/urgency is frequent, annoying and embarrassing. As daunting as it can seem, self-catching can offer freedom and control. It allows you to completely empty your bladder and gives hours of comfort and peace of mind whether at home or out and about. The idea filled me with panic, but it ended up being a useful way of controlling a symptom instead of it controlling me. Talk to your doctor about the possibility.

    Like

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