Bladder

Ask Me Anything: What You Need To Know About Peeing Your Pants.

Recently, I asked fellow Trippers to send me the deep, dark questions about multiple sclerosis that need answering, and you guys didn’t hold back. I got so many great questions that I decided to split them into a few posts. As always, talk to your doctor. This isn’t professional advice. This is more like a psychic hotline that somehow knows the letters M and S mean something to you, and then predicts you will fall down the stairs. Spooky, right? But not medical advice!
 
Your first questions were about one of the more distressing symptoms of MS, which also happens to be among the most common: the messed up bladder. From retention to incontinence, if you have MS, chances are your bladder is trying to ruin your life. If you’re among the fortunate few whose bladder isn’t a controlling jerk, well, start doing your kegels just in case. 
 
Nobody wants to talk about bladder issues, but I am here for you. As someone who has peed her pants in so many inappropriate places, I’m taking one for the team, and spilling my secrets on how I’ve dealt with it. 

Where were you when I needed you?
Cheryl B asks:
 
Are there any medications that are successful with treating bladder issues (I wake up every two hours during night/bedtime to go to the bathroom). My neurologist only recommends self-catheterization and I do not want to do that.
 
Anonymous cuts right to the chase: 
 
Diapers or catheter? My MS incontinence is pretty much the least sexy thing I can think of, so I don’t really want to talk to my husband about it. 
 
Answer:
 
Ladies, I hear you. Double-voiding and limiting caffeine might work for some is a bullshit solution. I wish it were as simple as a pill; I know that catheterization sounds extreme, and just typing the word diaper hurts my horcrux, the idea is so appalling to me. Then again, so is publicly losing my shit. The point is, this thing is complicated. 
 
I have no experience with diapers, except I’m pretty sure I was a baby once. As an adult who likes to wear skinny jeans, and (no judgement), isn’t into kink (ok, some judgement); I’m not a fan. I realize I have to get over myself, because I don’t wanna contribute to stigma around the tools we must learn to love in order to blah, blah our best MS lives. So, let’s agree that diapers are helpful for some, and fucking call them something less…diapery. Like sparkle pants or les couches fantastiques.

Because even merde sounds better in French.
 
If you’re a regular reader, you’ll know that the clear winner for me is self-catheterization, which sounds terrifying, but is really just a fancy way of saying ‘tapping the keg’, which is just a trashy way of saying the “gold standard for medical bladder emptying” which is wikipedia’s way of giving me first prize for peeing. Medically.  
 
Okay, maybe medical bladder emptying still sounds terrifying; or at the very least, confusing, but as a long-time practitioner, I can tell you it has liberated me (like for realz, not in the Zamboni way, if you’ve been around long enough to remember those dashed dreams). You can read my love letter to Cathy here.
 
Catheterization is not without its cons. I need regular antibiotics to ward off UTI’s and supplies can be hella expensive. Plus, I obsess over antibiotics messing with my gut biome, but that’s a topic for another day. Self-cathing isn’t for everyone, but not because it hurts (it doesn’t), or because of stigma (fuck that).
 
But wait! There’s more.
 
Before committing to sparkle pants or making friends with Cathy, most people with MS will try one or more of a number of medications whose goal it is to keep your pee inside you. Again, everyone is different but these drugs were not helpful for me. Preventing urgency made my retention worse, and caused side effects like dry mouth and constipation. If you think dry mouth doesn’t sound so bad, it’s because you’re not open-mouth kissing me, and if you think constipation is NBD, I’m so happy for you; you probably don’t have MS.
 
Another option for wrangling your bitchy bladder is botox, which I have not experimented with, but have heard good things about. This is probably the most aggressive way to go. If you’re gonna get botox, you have to have first failed on the meds, and be willing to use a catheter full-time, because once you botox you can no longer freestyle at all.
 
The good news is, you have options, so explore them. Many, like me, have been able to get this under control. Don’t suffer. For gods sakes don’t stop drinking.
 
Okay, but what about bringing sexy back?
 
Anonymous, like a lot of us, wants to keep things sexy in a decidedly unsexy sitch. And here’s where the emotional cost of MS comes into play. I get it. Feeling diminished by this disease is balls. I don’t even like getting dressed with The Banker in the room because I don’t want him to see me wrangle my twisted, dead-weight legs into my lululemons, as I fail to keep from sliding off the bed and have to use a 17-step procedure to pull myself up again. No. I need to trick him into thinking I’m a graceful ballerina while I tell myself he hasn’t noticed my Frankensteinian gait because I’m wearing a push-up bra.  
 
MS might be fucking up my body, but I still need to feel, and be seen as, capable, strong, independent, and yeah, sexy. Hopefully Mr. Anonymous will support whichever way you decide to manage this, because trust me, it is manageable. And nothing is sexier than having your shit together. So to speak. 
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Can Toronto be about social justice when it’s bathroom laws suck?

I love my city. Our city. I love our theatres, our comedy, our shopping. I love our big city lights and our big, bold sign. I love so much of what this town has to offer, but more than anything, I love our food game. From poutine to poke bowls, from dim-sum to designer donuts, Toronto is one of the most diverse cities in the world and our food culture reflects that. A boozy brunch with my girlfriends or a night on the town is part of what makes city life, well, city life. Going out has always been part of my lifestyle.

And, for a long time, I took it for granted. 

Until recently, it never occurred to me that something as simple as dinner and drinks might be on the endangered list; that the combination of multiple sclerosis and this city’s inaccessible spaces would make it anything but simple. MS and out-of-date design are threatening the world of going out that I love so much. Like most, I took reasonable access to public bathrooms for granted. 

Part of the charm of Toronto, and of many cities, is old-school architecture. But overwhelmingly, this means most bar and restaurant bathrooms are located in dungeons beneath steep, sketchy stairs. We’ve all agreed that a safe place to pee is a pretty basic human right; restaurants and bars are required to provide potties. I don’t want to bore you with like, the law, or anything, but these regulations only protect a portion of the population.

More than 10% of Canadians aged 15-64 have disabilities (Stats Canada 2012). It’s higher than 35% for persons over 65. That’s a freaking lot of people who have nowhere to pee in the mind-boggling majority of places. 

In Canada.

In 2017.

We don’t say “I’m in the mood to pee”.
We say “I HAVE to pee”.
While I wait for society to catch up, I’ve been coming up with some work-arounds to keep me on the bar stool and out in the world. When I’m invited to the cool new gastro-pub in the latest hipster ‘hood, I call ahead or check the AccessNow app to determine whether or not the place has a main floor bathroom. It almost never does, which means it’s gonna be more of a kangaroo rat-kinda night.  

These bitches don’t drink – ever. Look it up.
Kangaroo rat-nights mean skipping slushy pink cocktails and generous glasses of wine. Those are classic pee makers. Kangaroo rat-nights mean ordering saltines and hard liquor, because drinking whiskey by the ounce provides a pretty good buzz with none of the inconvenience of water. 

Whether we’re talking about gender, race, or ability, bathroom access can be a yardstick of a society, reflective of who, and what, we value. Before MS struck, my fully-functioning-legs privilege let me live in ignorance of this problem. If we don’t speak up, businesses might wrongly assume that accessibility isn’t an unmet need. 

Look, I get it. First the gluten people, and now this. It can be tough to make everyone happy in the restaurant biz. But aside from it being the right thing to do, business owners have the opportunity to be leaders in the next big social justice movement. Nobody really likes stairs anyway. Even healthy people groan when they realize they have to walk down the stairs to pee, tipsy and in stilettos. 

Still not convinced? Consider this:

Branding: Accessible businesses have bragging rights. Being ethical and inclusive will earn you the respect and repeat business of customers of all abilities. 

Reputation: Toronto is respected for its diversity and inclusiveness, as is Canada. As a business owner you help create and maintain that reputation.

Money: Accessibility not only affects disabled persons, transgendered people, and parents of small children – it affects anyone who wants to hang out with them. Accessible businesses reach more people. More people means more money. Don’t you want more money?

The Law: Many upgrades can be done inexpensively, and will pay off in the long run. The deadline for compliance with the Accessibility for Ontarians with Disabilities Act is 2025, so be forward thinking and do it now, while it’s still cool, before that nagging B, the government, gets all up in your face.

Here’s an adorable picture of me.
Don’t you want to serve me a drink, and let me pee in your powder room?

There are accessibility barriers beyond bathroom access that haven’t been dealt with here. But bathroom rights are a hot topic right now, so while we’re thinking about it, debating it and legislating it, because we know how effing essential it is, we must remember to consider everyone. Disability is not a new phenomenon, and sadly, nor is over-looking this population. In an era of unprecedented social awareness, even unintentional obstacles that exclude persons with disabilities from reasonable participation, can feel like discrimination.

I know a well-curated cheese plate and artisanal beer-flight aren’t going to fix my MS. But being able to participate in the social world around me is what makes life worth living. So, let’s make a deal – you provide inclusive facilities, and everyone I know will social media the hell out of your business. It’s time to invite everyone to the table and to la toilette. 

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Honey, I peed the bed: Solving My Worst Nightmare With MS

‘Are you awake?’. Sniff. Sniff. Sob. “Wake up, I peed the bed.”


It’s 3am and after a certain age nothing good happens after 2am (or before 10am for that matter). When someone is gently waking you because they’ve peed the bed, you expect to see the tear-streaked face of a child hovering over you. But, we have no children and the dog can’t talk, so by process of elimination The Banker (aka my husband) knew it had to be me. Plus, as I have mentioned, my dog is perfect. That bitch would never pee in the house, let alone in her own damn bed. 

You disgust me’

The Banker rolled over and was immediately sympathetic. He enthusiastically offered to pee the bed too, if that would make me feel better. I thought about it,  politely declined, and we set to stripping the bed, doing the laundry, and after showering I finally tumbled back into clean sheets just before the sun came up.

The scene, though dreadful, was not unfamiliar. And the bed was not the only place I had been experiencing this awful problem to various degrees of humiliation (the mall, the car, the street, your house). After suffering through periods of self-inflicted dehydration, permanent abdominal bruising from pushing on my bladder and a host of side effects from useless meds, I decided it was time to try something else. Enter Cathy.

My doctor and I agreed I was running out of options and so she arranged for a nurse to come to my home and teach me how to self-catheterize. Self WHAT? I know. It sounds horrifying. But hear me out because self-cathing means you get to put the pee where you want it.  I can’t emphasize the goodness of this enough.

Like the mysterious tampons of my adolescence it actually didn’t take too much time before I got the hang of it. After a few days with a mirror and some patience I could self-catheterize blindfolded and drunk if I’d needed to. 

But like adolescence the psychological impact messed with me more than the actual mechanics. In puberty the introduction of these tools signals a transition into adulthood. Terrifying times but exciting times. The introduction of continence care feels like the welcome mat is being rolled out to Disease Town which is a suburb of Oldladyton. And learning to cath (when I could have kept on peeing the bed like an actual child) felt like I was signing up for my seniors’ discount. Worse still, it meant I had to acknowledge and accept a more permanent state of disability. 

I don’t know how I came to terms with it but I did. It doesn’t hurt. That helped. I don’t pee the bed anymore or my pants for that matter. Ever. That definitely helped. My hair didn’t turn grey and I have yet to be mistaken for a granny. My friends know and they don’t care. The Banker is totally unfazed and still thinks I’m hot. So, here is a secret: It’s not that scary.

I didn’t get there overnight. In the beginning I couldn’t bring myself to even say the word ‘catheter’ and so I personified the shit out of it turning the whole thing into my new frenemy Cathy. Before long that skinny bitch was coming everywhere with me and soon I realized, making my life easier. She liberated me. I had the security to leave the house, go to bed, stay in a hotel or at a friends’ place. And as an unexpected bonus, gave me the excuse to buy pretty things. Because if I need accessories to pee, I am going to find the perfect Kate Spade wristlet to carry them in.

There is a fine line between TMI and NEI (not enough information). It’s hard to talk about this stuff and so we don’t and then it’s lonelier and scarier than it needs to be. I’m not suggesting we all post our continence status on fb. Ew. But whatever. It’s just pee. It’s mostly wine water. Get on with it.


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