Relationships

How To Hack Your Sex-Life When MS Messes With Your Mojo

I’ve been reluctant to write about sex and MS because whenever I include words like ‘boobs’ or even ‘high heels’ in my posts, I get spam from Russian porn sites, and creepers from wherever creepers live (Alberta?). Plus, my parents are alive and they tell everyone at church how great this blog is. And anyway, if you have MS, you already know that sex can be complicated. Unless you don’t. In which case, you might be beating yourself up over something that isn’t actually your fault. And that seems like a good enough reason to write about this *ahem touchy subject even though we have a family baptism coming up, and I’m gonna have to look all those church people in the eye (Wassup, St Matty’s).

I’d read about the possibility of MS messing with my mojo in a pamphlet when I was first diagnosed at 22, and once I was married in the eyes of God (cough), I experienced a handful of the symptoms that are collectively known as sexual dysfunction (SD) first hand. It was scary and confusing and frustrating. Though SD is extremely common in MS, most patients never discuss it with their neuros (R-Dogg would literally faint); or, I should say, most neuros never discuss it with their patients, because the onus should really be on them.

Sex with MS

The first few times my elevated body temperature and physical exertion left me incapacitated after intercourse, I think The Banker thought he was the man; like, what kind of super-hero love-making skills does it take to render your girlfriend (he means wife) temporarily paralyzed and literally seeing double?

As I would later find out, MS can do a lot more than turn your post-coital (ew) legs into spaghetti while you try to cool down and focus on how many fingers you actually have. According to every edition of Cosmo I ever read, the brain is the most powerful sex-organ. Which isn’t particularly helpful news for those of with brain damage. Like, duh. We know. That’s the problem. The brain is in charge, and if you have MS, this complicated organ can come for your sex life from three directions. Here’s the skinny:

Primary Symptoms

Demyelinated nerves can directly impair sexual function by causing diminished sex-drive, decreased lubrication, problems with orgasm, and erectile dysfunction.

MS is literally a boner-killer. Medically speaking.

Before you say Netflix and no thanks, know that there are some ways you can outsmart your brain and manage these symptoms.

Diminished sex-drive

A low sex-drive can be caused by MS, but certain meds can interfere as well. Talk to your doctor to see if your prescriptions are possible culprits and if a medication change is possible. Low levels of testosterone are more common in MS, and can contribute to feeling over it, so consider getting your T tested. This goes for women as well.

You don’t have to want to do it. You just have to want to want to. Then figure out what gets you there. I’m not gonna tell you to turn off all the lights and drink a bottle of Arbor Mist. You do you.

Dryness

Seems obvious, but get yourself a proper water-based lubricant. Then use lots of it. Do it on your partner’s side of the bed.

Problems with orgasm

I’m not particularly into Spoon Theory (technically it’s a metaphor); but if I were, I’d tell you that sex costs all of today’s spoons and some of tomorrow’s. And anyway, energy reserves should be measured in batteries. And speaking of batteries, get yourself something with batteries. Powerful ones.

Erectile dysfunction

Dudes, if you haven’t heard (seriously?) there are highly effective medications to manage your man-stick, and you don’t have to wait until you’re going grey to get them. So like, get them.

Secondary symptoms

The secondary symptoms that further try to cancel your sex life, are the symptoms that aren’t directly related to sexual function but definitely get in the way of it. Like, it’s hard to be in the mood when you’re dealing with bladder and bowel dysfunction, pain, fatigue, spasticity, weakness, and 17 other things I’ve over-looked. Communication is great, but it isn’t always easy to say:

“Not tonight, honey. I can’t trust my bowel RN.”

When you’re dealing with any combination of these symptoms (because really, who has just one?), sex can feel like yet another thing you have to do while you’re struggling just to get through your day. And, of all these symptoms, fatigue might be the joy-sucking Dementor-In-Chief.

Oh, you wanna do it? Okay, but do you also wanna make dinner? Finish the laundry? Clean the bathroom and everything else I was gonna do tonight?

Just kidding. I was gonna do none of those things (scroll through Insta, drink wine from the bottle, sleep in the shirt I wore all day). The point is:

Sex tricks the chronic illness brain. You see a bed and your brain is like, Oh yeah, I wanna lay down. Ooh, are these flannel sheets? Sure, I’ll have a glass of wine. How relaxing. Then suddenly someone expects you to do stuff. And that stuff is suspiciously like exercise.

This was not supposed to be a place of exercise.

traitor

But, just like exercise and the surprised feeling I have every single time I don’t wanna do it but then I’m glad I did ‘cause afterwards I feel awesome, the feeling only lasts until I try to bend my legs. Or stand up. Or make it to the bathroom before a UTI sets in.

What you can do about secondary symptoms

Secondary symptoms need to be addressed regardless of their impact on your sex-life. There are medication and lifestyle modifications that can improve things. The following strategies are add-ons to an existing MS management plan. As always, not medical advice.

Spasticity

I try to take an extra dose of my spasticity medication before the main event, but always talk to your doctor. Try stretching; or better yet, get your partner to help you stretch. Too medical? I don’t know. Guys; I don’t write for Cosmo.

Pain

Remind your partner about spots that are painful or sensitive to the touch. And then remind them again.

Bladder/bowel

If you’re stressed about the state of your bowel or bladder you are not gonna have a good time. A sense of chill is important. The Banker is used to hearing, “Can you hang on a sec, I have to pee”, and he will take what he can get. But this might be trickier to navigate in new or casual hook-ups. Do it when you feel safe.

Weakness

Cosmo didn’t cover this (note: I did not verify this); so, talk to your doctor, or just do what I do, and let your partner do all the work. If this seems selfish, it’s because I am.

Fatigue

Hacking your sex-life with MS may mean the death of spontaneity; but like, get over it. Like most things with MS, sex takes planning. Put it in the calendar, and budget your energy accordingly. Maybe don’t hit the gym and the hay on the same day. Sex should totally count as physio anyway. Make a plan, but agree on an exit strategy. MS can turn on a dime, and it can be comforting to have an agreed-upon, no-blame, safe-word pact that lets you opt out without having to explain away pain, fatigue, or a sketchy bowel. Just say ‘banana’, and write a rain-cheque.

Tertiary symptoms

MS can lead to depression and anxiety, even low self-esteem. MS can change how you feel about your body. There may be times when you don’t even recognize yourself. I’ve sometimes felt like so much has been taken from this body, it’s hard to imagine it has anything left to give, and in my darkest moments that someone else should want it.

Internalized ableism would have us believe that people with disabilities don’t need, want, or, worst of all deserve to have a healthy sex life. We don’t have enough (any?) sexy role models who happen to have disabilities; so we can hardly be blamed for struggling to recognize our own desirability.

I’m too sexy for my rollator.

Partners of people with MS have admitted to feeling confused by invisible symptoms. They may blame themselves for a lack of bedroom action. They may feel rejected, believing that your pass at passion means you’re no longer into them. They might feel guilt for wanting you so bad when they know how expensive sex is for you. Maybe they’re afraid to bring it up.

And maybe you feel for them. And maybe you don’t. Because, as if the list wasn’t already long enough, now you have to manage the emotions of someone else. You find yourself re-assuring them:

It’s not you. It’s me.

Which is bullshit of course. And a lousy thing to tell yourself. It’s not you, it’s MS. And you are not your MS.

What you can do about tertiary symptoms

Address and treat depression and/or anxiety. Not just for the sake of your sex-life, but for your overall well-being.

Do what you need to remind yourself of who you are, and to feel a little more desirable. It can be hard to feel sexy when you haven’t showered since the solstice, and you don’t want anyone to smell your hair. Spiffing up can add to fatigue, but even I can admit there’s something energizing about smelling like not dirt. Being the version of you that feels the most welcoming doesn’t have to happen every day. Budget accordingly.

Sex can make any of us vulnerable. While you’re worried that a mobility aid has you looking more feeble than fetching, your partner definitely has their own weird issue, like a third nipple they’re terrified you’ll discover. If you’re having trouble finding style role models, check out hashtags like #babeswithmobilityaids. It’s not just me posing with cute rollators. There are people with varying degrees of disability putting themselves out there to help change the narrative about what it means to be fab.

What your partner can do

Partners, know that we want to be the sex-machines you deserve. Managing any or all of these symptoms is exhausting and overwhelming. You can help hack this. In fact, you must. The effort to keep the flame alive can’t be one-sided.

You can always make me a Cosmo. Wink.

Don’t give up on sex with MS

Loneliness is a major problem in MS; one that can literally shorten lives. Doing what you can to stay connected is as important as any medicine you could take.

It’s normal to grieve what you’re going through. Cosmo promised me my sexual peak was at 30, and the universe gave me MS 8 years earlier. It’s not fair, and freaking out is entirely justifiable. But grieve and get on with it. You don’t have to let sex become another casualty of this disease.

Stay sexy, Trippers.

Update: I just googled Cosmo, really to see if it still exists (I read VF now, because I’m an adult). Anyway, it does. And let’s just say, it’s way more…thorough? than I remember. There’s a whole section on interabled couples, with some very NSFW images. Go and be inspired. Nice job, Cosmo (things I thought I’d never say).

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How To Know Your Worth In The Face Of MS Intolerance

How To Know Your Worth In The Face Of MS Intolerance
I could list the ways I’ve been left out, treated differently, or whatever gentle words you wanna use to describe being dissed and discriminated against for having MS. 
 
There was the New York City girls trip that happened in secret, because I might have ‘slowed them down’. There were professional opportunities for which it was assumed I was ‘not well enough’. There was even the chance to be in a docu-drama and reality series that I was forced to forgo once my diagnosis had been disclosed.
 
But none of these indignities comes close to impacting me like the gut-punch that came with the first time I felt othered for having MS. 
 
When I was first diagnosed I worried about what would happen to my body, natch, but I never considered people would treat me differently. My obnoxiously confident younger self had no idea I’d just become that girl with MS, and was thus protected from feeling reduced by my disease, at least for a little while. 
 
The first year AD (after diagnosis), as I struggled to come to terms with my new reality, I found comfort in a network of support. I had good friends who rallied around me (the epic NYC diss still a few years away), my employer was accommodating; and sure, I had a break-up or ten with my on-again, off-again bf, but I didn’t think that had anything to do with MS, break-ups and drama being part of the deal when dating a bartender with a soul patch.
 
Fast forward a couple of years AD. By now I was rocking the whole invisible illness look. The shock of my dx having worn off, my employer stopped feeling sorry for me and started giving me the side-eye of doubt for taking so many sick days. Things were getting trickier for me at work, but my relationships were better than ever. 
 
In fact, my Justin and Selena situation with The Bartender was in an on-again cycle, and I was starting to think things were actually getting serious. Except for one thing. I was never invited to his house, where he still lived with his parents. For a long time I didn’t notice this slight. I mean, I wasn’t exactly interested in seeing this guy’s childhood Lego collection, and it made sense for us to hang at my apartment where there was unlimited vodka and no chaperones. 
 
Then came Easter.
 
I knew all about The Bartender’s complicated, symbol-heavy, Ukrainian Easter tradition. For weeks leading up to this particular year’s dinner, I’d been not so subtly gunning for an invitation to the main event, under the pretext that I’d wanted to see for myself just how strong you have to make homemade horseradish to invoke the passion of Christ. Of course, I was only pretending to care about Paska and whatever the hell Pysanka is. I needed to know Soul Patch was serious, and that meant meeting his damned parents. But every time I referenced the Resurrection, The Bartender found something else to talk about. 
 
By Good Friday my weekend was still wide open. I determined he just wasn’t into me, and we needed to break up. This time for good. I was pissed at his cowardly inability to just come out and say what seemed obvious. So, I confronted him. 
 
I fully expected to hear some excuse about how he wasn’t ready for a commitment and blah, blah, bullshit blah. But when I asked if my invitation had been lost in the mail, he was defensive and evasive. He didn’t want to break up, but I couldn’t come to dinner either. He refused to tell me why.
 
You already know what was happening here, but I didn’t. When I insisted he tell me what the eff was going on, he confessed that his father didn’t approve of our relationship. Uhm, what?
 
Growing up I was the kid other people’s parents wanted their kids to hang out with. A straight-A student, mature like a boss, I was a modern day, Catholic school, female Eddie Haskell.  
 
So, even when The Bartender said, “What’s the one thing you have that nobody else does?” I literally said, “RED HAIR?” 
 
I was that fucking clueless.
I made him say the words, not because I’d needed to hear them, but because I honestly didn’t know how someone who didn’t know me could possibly disapprove of me. It’s not you; it’s me your MS

(Not exactly a WWJD attitude if I’m remembering Sunday School correctly.)

The Bartender didn’t want to tell me, because he was trying to protect me. And when he spelled it out with those two vile letters – MS –  I was devastated. 

In the months that followed, whenever I would tell this story, I’d feel wounded all over again by the number of people who sympathized with The Bartender’s dad, telling me he was just trying to protect his son. My hurt feelings turned to alarm when I realized this wasn’t an isolated attitude. So many people were comfortable telling me how scary it would be to contemplate a future with me – like I was expected to roll over and accept that I’d become a poison to be avoided at all costs. How could I go through life thinking of myself in this way?
 
I couldn’t. I wouldn’t.
 
I know I can’t convince someone else of my worth, but I sure as hell can convince myself. I dug in my heels and refused to believe I was any less of a prize than I’d always been. I refused to accept that because I had MS, I wasn’t just as entitled to my happily-ever-after as my mother had always lead me to believe.
 
In the end, we didn’t break up. The Bartender held his ground with his father, while his mother sent me secret notes, letting me know I had at least one silent ally. And then, the following year, like the Ukrainian kielbasa that symbolizes God’s favour for some reason (look it up), I was unexpectedly invited to the Easter table.
 
Halle-freaking-luia
 
Eventually, The Bartender became The Banker and by the time we were married, his dad had come around. We never talked about the stand-off; they’re not that kind of family, but The Banker’s father danced with me at our wedding, and welcomed me to the family. 
 
Unexpectedly, one year later, my father-in-law died. I’ll never know what changed his mind about me, but I’ll always be grateful for his blessing on his son’s choice of bride, and for his willingness to open his heart to me.
 
I know there will always be people who believe it’s acceptable for a father to try to prevent his son from being involved with someone with multiple sclerosis – even that it was the right thing to do. And that’s okay. I’m sure there are lots of people who don’t think they could handle having a partner with MS; a partner like me. That doesn’t make me less-than. 
 
It makes them not enough.  
 
 
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Sorry. Dating Me Doesn’t Make You A Good Person

Sorry. Dating Me Doesn't Make You A Good Person

The morning after date night with The Banker, I woke up and sifted through my memories of the previous evening, stopping to ruminate on the worst one. As one does. In fact it was a good night; a great night even, and I’m pissed at myself for giving attention to the only negative part of it, but here we are. And you didn’t click this bait to hear about the charcuterie and the champagne, anyway. You’re here because you wanna hear about how some a-hole othered me

Thanks to MS, my walking looks ugly. I’m not in the habit of mean-girling myself, and I’m grateful to be walking at all, but if I’m being real, my walking isn’t cute. It’s bent and twisted, unsteady and insecure. It has more than once been referred to as Frankensteinian. Adding insult to injury, it happens in sloth-like slow-motion. Even when I’m rushing, I can’t help but move slowly. So impossibly slowly. Wherever I go, my stride draws stares of fascination and concern; stares that I swear I can physically feel. I know how uncomfortable it makes people to watch me walk, and yet, nobody seems to look away. 
 
In these moments, I, who am normally so self-possessed, so confident and cool, feel reduced; self-conscious and self-loathing of my un-co-operative body. My poor, wayward body, that’s just trying to do its job, and doesn’t need any extra attitude from me. I feel desperate to remove myself from these situations as quickly as possible, but quick just isn’t possible. And so I want to scream Don’t look at me! But instead, I smile weakly and I apologize.
 
For being in the way. For taking up space. For being inconvenient. 
 
Last night as we were leaving our favourite French bistro that is far too cramped to comfortably accommodate a rollator, I made my way through a maze of tables, dodging busy waiters, with a cane on my left and The Banker on my right, while muttering “excuse me”, and “I’m sorry” on repeat. I tried to tell myself I wasn’t making a scene; that it really is self-indulgent of me to think everyone in the room was absorbed in my struggle to get to the front door, when a diner two tables away, in a tone that could only be considered admiration, called out to The Banker “You’re a good man”. 
 
Oh, really?
 
Quick. Somebody get him a medal.
 
What’s the bfd? The Banker is a good man, maybe even the best man. But that rando doesn’t know that. And his comment stung. All he knows is that a man who looks like he almost certainly works at a bank, had dinner with a beautiful, if slightly busted, woman. This douchebag diner, who looked at me, but wouldn’t look me in the eye, was so impressed by our togetherness, he felt compelled to publicly compliment it. Well, part of it. The implication being that there is something extraordinary about someone like The Banker being with someone like me; the lucky girl this virtuous man took pity on. What in the fucking fuck. 
 
I know this is bullshit. I know it shouldn’t matter what other people think. I even know I’m over-reacting. Normally, this is the part where I say something wise and uplifting, or at the very least hopeful, but this time I got nothing. I guess I’m still getting used to my disease walking into a room before I do. 
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14 Valentine’s Day questions about true love and MS

Love it or hate it, it’s Valentine’s Day, and if you’ve got love in your life, this is the time to flaunt it in everyone’s face. Whether you love your kids, your cat, or your significant other, it’s nice to know there’s a date on the calendar where it’s socially acceptable to drink too much wine on a Wednesday and eat chocolate hearts for breakfast, lunch, and dinner.  

I myself am among the hashtag blessed who are lucky in love, having been happily married for like, ever. And my luck must be obvious, because it’s frequently pointed out to me. It’s a popular idea that women with diseases like multiple sclerosis are especially lucky should they happen to find their Prince Charming and trick him into marrying them. 

Yeah, I said lucky. As in accidentally getting something great; something random you don’t deserve, or haven’t earned. 

Lucky for me, it’s my partner who thinks he’s the lucky one. The Banker and I hooked-up pre-MS, in a life that was so long ago, I barely remember it. We tied the knot post-dx, and from the moment we announced our engagement, our relationship has been judged by some as extra-special. Of course, we smugly agree that our marriage is the bomb. We’re both proud of what we’ve built. But even after all these years, we still find ourselves explaining the whole marriage-with-MS thing, because some are still genuinely baffled that a grade-A guy like The Banker would willingly sign up for a life with, well, a utility-grade girl like me. 

Is it ever reasonable to wonder why someone would choose the sickness part of “in sickness and in health”, so soon into a relationship? Maybe. Do I have a flat pancake ass? Definitely. The point is, YOU DON’T NEED TO POINT IT OUT, OKAY? Rude. 

Literally fucking everyone knows that marriage is hard, and divorce rates are high, and blah, blah; I don’t wanna gross you out even more with the break-up stats when MS is involved – especially if the partner with MS is a woman. You think it was “brave” of someone to marry me? Well, what about me? I walked down the aisle knowing I’m statistically more likely to offer to help you move than I am to hang on to a man who will nurse me through the worst of what MS can do. This scene obviously isn’t for everyone, and that’s cool. 

I didn’t want to marry you anyway. 

My defensiveness aside, I do understand the doubters who, for their own good luck or utter lack of imagination, can’t envision this life for themselves, or even for someone else. I also know it’s easier to scoff at the ignorance of how uncomplicated our marriage actually is  because, at least for now, we are still true partners. The impact this disease has had on our relationship has been manageable. I know that could change some day, but we’re not there yet. And I’ve been trying really hard to stay grounded in the present lately. 
So today, on this most sacred and holy day, I’m here to tell you that marriage and MS can coexist. Because The Banker and I are nailing it. And you don’t have to take my word for it: I decided to interview my husband so you could see exactly what kind of person does co-sign for MS.

of course I have an adorable nickname


Thank you for coming.
This is our living room. I live here.  

Let’s get right to it. We’ve been married for like, 13 years. What’s the hardest thing about being married?
I don’t ask for help, and with marriage sometimes you need to be the one leaned on, but sometimes you need to do the leaning. I don’t always like to do the leaning. 

Are you saying MS isn’t the hardest thing?

No. It’s not. 


Wow. I would have definitely said MS, followed closely by indoor temperature negotiations, but you usually let me keep the heat jacked. 
Well, I am the more considerate one.

That’s true. Is that why you married someone with MS? Because you’re a hero?
Uhm, no. It didn’t matter that you had MS. I married you because you are you.

Okay, but, I know it’s not always easy. What’s the hardest part about loving someone with a disease like MS?
Watching you struggle when I can’t do anything. There are times when I can’t help; like, I can’t make your legs move for you, and I feel helpless.

What’s the biggest thing you’ve lost or had to sacrifice because of MS?
I don’t think I’ve lost big things. It’s smaller things, like holding hands while walking. When I’m pushing you in Optimus, it’s harder to have a conversation.

You don’t think it’s romantic to yell into the back of my head “WHAT? I can’t hear you”?

What would you say to people who believe you got a raw deal?
You do so much to help me experience life. When you’re in a marriage you do stuff for each other. I don’t see it as stepping up. We work to our strengths. I’m doing what I can to support my wife, but you do so much more for me.

I am pretty great. Let’s explore that. What’s your favourite thing about me?
It’s tough. There are so many things that I like; I can’t narrow it down to the best thing.

Yeah, but try harder.
It’s easy to point out your physical attributes, your mind, and your personality. That stuff’s easy; but like, you make me a better person, and you make me enjoy life.

If you could take on one of my symptoms for me, which one would it be? 
I think I would take on all of your symptoms, in a way to shoulder it; so like, if we could split them almost. So it’s not as big a burden for you.

What, like 50/50?
(Long pause) Uh…60/40?

60/40. You really are a hero.
It would be difficult for both of us to be fucked; so fine, I would probably take on the fatigue just to let you do more stuff. I think I can fight through a lot of tiredness; I don’t get a lot of sleep during the week anyway.


Oh NO he didn’t.


So, you’re saying you could handle MS fatigue better than me? 

(We explored this for the next 27 minutes.)

What do you think is the biggest misconception people have about MS?
Apparently, it’s fatigue.
What do you think is the most important quality someone with MS needs to have?
Empathy.

Empathy?
MS is always gonna be worse than whatever the healthy person is going through. 

Are you saying I lack empathy for your man-cold and dislike of needles? 
This feels like a trap.

Before we wrap this up, let’s find out a little more about you. Did you always know you wanted to be a banker?
No. You know I’m not actually a banker, right? I don’t even work at a bank. 

What’s your favourite thing to do without me?
Eat gluten and sugar. 

Do you agree that drinking every day is a good idea?
Wtf does that have to do with MS?

Nothing, I was just hoping you would make me a drink.

Who would play you in the movie of our life?
James Franco?

Ew. The correct answer is Benedict Cumberbatch. 

Final question. How much money is too much money to spend on Valentine’s?

Valentine’s is a made-up, commercial holiday.


Yeah, that’s why it’s so awesome. You get the presents of Christmas and the candy of Easter without having to go to church.

Happy Valentine’s Day, Trippers. I love you all.


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