Month: July 2015

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 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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Shit I swore I would never do

I swore I would never write a blog. I already talk too much and am sick of hearing about my own boring problems from my big boring mouth.  But maybe in writing about my experience living with MS I won’t need to talk so much and I can use my verbal blabbing powers for more interesting pursuits (like celebrity gossip and auctioneer imitations). Because on the list of my Personal Disease Anxieties, torturing everyone with endless tales of MS woe is right up there with my fear of spiders and my inability to safely wear flip-flops.

I believe in living with MS. Like, really living. I would love to be the Gwyneth of having MS. I want to learn how to consciously uncouple from MS but also where to find the most bad ass cane and then determine whether simultaneously wearing a bowler hat looks cool or crazy, all while eating locally sourced organic crudités and sleeping in my perfectly feng shue’d bedroom.

You might find this blog glib or trivial and if so, good. MS has A LOT of serious information and bad press out there. We already know this sucks but if we scratch a bit deeper, perhaps we can find a little humour or the teeniest bit of levity in this absurd situation.

Recently I was asked how much I want to be an advocate for this shit show and I groaned. None of us applied for the job. We didn’t go to school for this. Nobody grows up wanting to be the spokesperson for a crappy disease, obvi. So, I won’t pretend to be an advocate, just one story. Because even with what feels like an all consuming disease, life is about more than just one thing.