5.14.2018

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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5.07.2018

Has Clean Eating Really Improved Your MS?

Is cauliflower even worth it?

My next edition of Ask Me Anything About MS addresses the controversial topic of diet and multiple sclerosis. What’s in your smoothie seems innocent enough, but as I started to write this post, I realized this is a very layered discussion with, spoiler alert, a very ambiguous answer.

dmrut asks:
How long have you been clean/healthy eating? Have you noticed any changes or improvements to symptoms? What are the most noticeable?

Tori wants to know:
Have you felt a difference from changing your diet and clean eating?

And Barbara asks:
…What goes in your smoothie? Does any of this have an impact you can sense?

Answer:

Food makes me feel good. Or it doesn’t. Trying to honour that is a daily commitment. Food lets me feel like I have the opportunity to do something good for my body, good for my MS every time I eat; and in a disease that can feel like it’s taken me hostage, it’s nice to feel even a teeny sense of control. 

By now you know that I’m no doctor. There’s no good reason you should follow my diet because I've borrowed a few things; but mostly, I just made it up, and anyway, I’m not exactly cured. 

Because kale doesn’t cure MS. 

Or anything else for that matter. I mean, maybe scurvy. But if you have scurvy, what is wrong with you? (Duh, scurvy.) Stop being a pirate and talk to your doctor. 

Before I launch into clean eating, I need to clean up my conscience. Brace yourselves, Trippers, for social media may have misled you. Sure, I dump a spoonful of flax seeds into my morning smoothie, but I’m hardly a paragon of clean eating. More like, clean-ish eating, like my baseboards, or my mind. They’re clean, but they’re not like, clean-clean. I start every damn day with a bucket of black coffee and end it with a glass of wine, or a martini, and I’m pretty sure nobody's recommending that. I believe food fights disease, but I don’t profess to know how (inflammation? magic?), and so I try to find the balance that works for me, and that balance includes booze. And chocolate. And if I’m being really honest, sometimes chips.  

Over the years my diet has changed more than a few times. I grew up in simpler times, in a family of five with two working parents, where convenience was king and avocados weren’t yet a thing. I drank soda and ate margarine, and never thought twice about it; it was the golden age of processed foods where bright orange 'cheese' slices were considered a legit source or calcium and bowls of tiny cookies counted as cereal. My dad used to make something he liked to call “pig shit and dandelions” for dinner, which I believe translates to ground beef and iceberg lettuce, which back then we just called lettuce, because there was only one kind. Believe it or not, I wasn’t always so sophisticated. 

My obsession with healthy eating began about 10 months and thirty pounds after my MS diagnosis. I was 23 and had returned to France to visit the couple I’d lived with as a teenager studying classical voice. They did not hide their shock and fancy French outrage at my steroid and comfort food-induced weight gain. At a last supper of sorts, I was told I was eating my final bite of camembert and was presented with an encyclopedic tome of how to heal auto-immune disease with diet. 

581 pages, guys. In a second language. So yeah, I needed a stiff drink to get through it.

Normally, when people accost me with miracle cures I lose my mind, but at the time, I was still new to the whole disease thing and I took it to heart. I didn’t know anything about diet and disease and the idea of being able to cure myself this way was intoxicating. The book itself looked so official, so medical. I mean, it was in French, so obviously I believed it. 

I started this super strict, whole food, mostly raw, and completely devoid of joy rĂ©gime as soon as my plane touched down in Toronto. I dropped all the weight and then some in just 3 months. More importantly, my MS got better. Like, a lot better. Of course I was on interferon and had a disease whose course was inclined to remission, but I gave le diet all the credit. No, that’s not true. I gave myself props too, for being so disciplined and awesome. I wasn’t the only one. My friends and family all congratulated me; proud of how I was kicking some MS ass. I wasn’t like those other people who let their disease get the better of them. I was 


Best. Patient. Ever. 

Of course, you guys know what comes next, but I didn’t. I was shocked when I got sick again. And again. And again. All the credit I’d been taking for my own well-being had turned into disappointment and self-blame. What did I do or eat to make myself sick again? I’d let myself, and everyone around me, down. It had to be my fault. 

And that is fucked up. 

Like, who did I think I was, trying to outsmart my illness? The last time I checked, MS remains an incurable disease. And I should know because I check every five minutes. But just to be safe, let me check again. 

"Hey Siri..."

There is still no cure for multiple sclerosis.

"How 'bout now?"
Stop asking stupid questions.

These days, there are as many multiple sclerosis diets as there are disease modifying drugs. And just like the drugs, the diets have their die-hard apostles who will insist that their way is the only way; and if you’re not buying it, you must not want to be cured badly enough. I will no doubt get more than one message or comment to this effect. Before you ask me if I’ve tried seahorse tears or whatever else worked for you, please remember that everyone’s MS is different; there is no easy one-size fits all answer. The stakes are high with these diets and the pressure from loved ones, the MS community, and even strangers to just eat our way to health can result in an unhealthy amount of blame and frustration. It’s not the diet that failed, it’s the patient.

What the hell? Are you saying diets don’t work? Can I get back to my Big Mac?

Yes and no, and no. Put down the poutine. I had to learn that I can influence my MS, but I can’t control it, and that doesn’t mean I’m not trying hard enough or that I’ve failed. Diet is just one part of my approach to multiple suckrosis, a compliment to an overall plan that includes conventional medicine, a physically active lifestyle, and a few things that ensure my emotional well-being. 

These days my diet is less restrictive than my French foray, but more restrictive than say, what I was doing 2 years ago. I eat fish and lean meats and lots and lots of plants. I avoid gluten, and dairy (except for organic kefir), and sugar (except when I have sugar), as well as most processed foods (an emergency Kind bar, and like, ketchup, because I gave up cheese, I am not giving up ketchup). I take supplements and look for ketones when I can. 

I feel good on this plan. It’s hard to say what the overall impact has been on my MS; because again, I'm not cured, but I believe that diet is a key contributing factor to my best possible outcome. Using food to help manage my MS, or at the very least feel like I'm managing my MS, is a strategy that works for me. Unless someone slips a peanut into my purslane, there is no downside. This isn’t the case for everyone. If you, like so many, have issues with food and dieting, this can get ugly real fast. At the end of the day, we all need to figure out what is helping and what is hindering us. 

Ahem, still waiting for that smoothie recipe.

Right. Like fruity milkshakes, smoothies are so good, it’s hard to believe they’re good for you. I love love smoothies, and could write a whole post about how avocado is the greatest emulsifier on God’s green earth. Smoothies let me start my morning with a jolt of nutrition. I switch up the recipe every day and if you want to follow my creations you can find them on my insta. In the mean time, I will leave you with this one, because, pink. 











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4.23.2018

The Other MS F-Word

Fatigue might not be the first F-word that comes to mind when you think about multiple sclerosis (hint: rhymes with suck), but it's probably the second, and it's definitely in the top 5 (falling, faking, fear, forgetting; take your pick). MS fatigue is a powerfully debilitating symptom that not only destroys your energy, but has the added magic of making your existing symptoms worse. 

Fuck MS

I’ve barely written about MS fatigue, because frankly, it’s difficult to articulate and if you’ve never experienced it, near impossible to understand. Chronic illness or otherwise, everyone feels tired every damn day, and everyone feels frustrated and invalidated in the un-winnable game of Who Is The Most Tired.  

But why do I need to prove to you that my tired is the literal worst anyway? That MS fatigue isn’t just tired, it’s crushing, soul-sucking exhaustion that feels like failure at life. 

Well, for one thing, I’m bailing on our plans at the last possible minute. 


Again. 

And I don’t want you to be pissed at me, or worse, stop making plans with me in the first place. MS fatigue is wrecking my week, maybe even my fortnight. And perhaps more than your forgiveness, I need my own. We live in a world where we’re constantly expected to show up no matter what ails us; where most people wear the “I’m so busy” badge like a complaint and a brag all at the same time. Fatigue is the invisible symptom that makes those of us that have it doubt ourselves the most.   

But I can’t prove it, can I? There’s no standard test for MS fatigue, and there’s no objective way to measure it, so when I say I’m bagged (cause, really, except for the French, who ever says I’m fatigued?), it’s my word against your idea that maybe I’m just not trying hard enough.

This next-level tired that's been plaguing me lately, came to a head yesterday. Convinced I’d feel better after working out the muscle tension I’d made worse when my legs had violently spasmed that morning, and happy to have an hour to just lie down, I rallied to get myself to my massage appointment at the clinic that happens to be around the corner from my apartment. Normally I'd walk, but this week I’ve been more effed than usual, so I Uber’d. I specifically Uber'd, because I knew from experience that a traditional cab driver, who doesn’t live or die by passenger ratings, would have been pissed to basically take me across the street, and I was way too emotional to deal with any surly, ableist bullshit. 

I asked my student therapist for a modified treatment knowing I wouldn’t have the energy to flip myself over on the narrow table at the half-way point. In fact, I had trouble just getting on that table, and had somehow arranged myself on my back so that my right foot was tucked up under my left knee. When I realized I needed help undoing this contortion, I felt so tragic and pathetic, that I almost cried. Fortunately, I was able to pull myself together, knowing that even a discount student-massage is neither the time nor the place for a proper meltdown. 

A scant hour later, as my treatment was ending, I was glad I’d left the house and made what felt like an enormous effort toward self-care. The knots had been worked out, and I was ready to drink my lemon water. Namaste. But when I went to sit up, I couldn’t. Flat on my back and mostly naked, I realized I couldn’t move either of my legs. As I was slammed back to the reality of the moment, I almost cried again. Almost.

I called the therapist back and asked him to bend my knees for me, thinking that would give me enough traction to push myself up. It wasn’t. With much difficulty, my inexperienced practitioner found himself having to lift my upper body to get me into a sitting position. He seemed at least as uncomfortable as I felt, and barely survived under my dead weight.  

If you're thinking this is the part of the story where I actually cried, you would be wrong. 

I pointed out his scrawny arms and told him he needed to hit the weight room. I for real said this, and feel kind of shitty about it now. Kind of. In my defence, he huffed and puffed like he was lifting a bloated walrus instead of a delicate fucking goddess; and let’s face it, MS fatigue makes me fangry (like hangry but impervious to snacks), and I cannot be held responsible for my emotions while in this state.  


I feel an attitude approaching.

Rapidly accelerating MS fatigue is my number one cause of mood swings. Fanger, is the emotional impact that strikes when the smallest task feels monumental. It's the frustration and rage at my own failing body, that gets unfairly re-directed at whomever and whatever happens to be in my way, or in the room. Ask The Banker, and he will discreetly blink twice to confirm this. Go home, PMS, you’re not needed here.  

After my massage, I Uber’ed home and somehow managed to take the dog out before falling asleep sitting up, and then waking, only to cancel plans with my new friend Andrea. I rescheduled our theatre tickets for two nights later, because I’ll definitely be feeling better by then, right?







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4.16.2018

When You Should Tell Your Date About Your Diagnosis

Part II of Ask Me Anything About MS

My next question from my "Ask Me Anything" series, comes from

Joe, who wants to know: 

When is the right time (if any) to tell someone you are dating that you have MS? First date? Second? The honeymoon?

Answer:

This is a tough one. Modern day dating is hard enough, but dating when you have a chronic illness like multiple sclerosis (MS), adds a whole new layer of anxiety to the process.  

If like Joe, you're wondering if you should keep MS a secret as long as possible, you're in luck, because technically MS can’t be confirmed, like 100%, without a brain autopsy, so, you could actually sail through the honeymoon and just wait until you’re a dead ghost to disclose your diagnosis. Let’s put a pin in that for a sec. For those who are inclined to a more open approach, there are a number of things to consider. 

Normally, this is the part where I say, don’t take my advice, ask your doctor, but doctors find partners because, well, they’re doctors. That’s usually enough to close the deal. Nonetheless, I feel compelled to remind you that I’m just a blogger with a MacBook. You don’t have to believe everything I say. 

Now that that’s out of the way, I can tell you that I am smugly married, and didn’t even have to bamboozle The Banker to the altar with that whole let's see what the coroner says routine. He was eyes-open aware of my MS long before we tied the knot. Better still, he knew he was getting a good deal. We both were. 

But the complicated truth about relationships and multiple sclerosis is that for some, MS is too much. For as many couples who have successfully navigated a partnership where chronic illness is involved, there are at least as many who have crashed and burned, or failed to launch in the first place. Okay, I made that statistic up, but it feels right, and I already told you this isn’t a scientific journal. I did however, do some research. 

After a difficult divorce, my friend Carrie was dipping her suspiciously numb toe back into the dating pool. After years of sketchy symptoms, Carrie finally received a diagnosis of MS while she'd been seeing someone for a couple of months. When she told him her news, he told her she had “too much on her plate to be dating”, which Carrie knew was code for “I’m not into sharing my plates”, and that was the end of that. 

Shocking, right? 

Of course not. For whatever reason (stigma, family pressure, fear, lack of understanding, lack of imagination), MS can be a deal-breaker, and if you find yourself up against this mindset in the dating world, don't waste your time. MS is tough. MS is not for everyone. Move on. 

My Ride-or-Die Brooklyn Bestie.

The good news is, there are people who can roll with MS; and those are the best people. Not because they’re heroes or some other bullshit, but maybe they’re a little more open-minded, a little less afraid, a little more willing to say yes. They’re the people who realize that nobody gets out of this life alive; might as well enjoy the ride. 

Knowing the lid to your pot is out there doesn't make disclosing this kind of intel any easier. But I'm here for you. 


Like, do you want me to tell them for you? That costs extra. 

Here are my top free tips for telling your future lover you have an incurable disease:

Buy some time 
Dating is about tricking the person you want to have sex with into thinking you’re perfect, and then slowly revealing your many, many flaws once they’re hooked on you like Miss Vickie's chips. If your MS is invisible you have the luxury of a little more time to keep things classified, because you don’t have to explain away a mobility aid or a limp, so figure out if you’re actually into this person before putting yourself on the line. Because:

It’s not herpes 
I mean, if you also have herpes, you definitely have to disclose that sometime between now and when your genitals meet, but you don’t owe it to anyone to tell them about your MS until you’re ready. Even if you use mobility aids, it’s up to you to determine when someone else deserves to know something so personal.

Be cool 
Do not schedule a We Need To Talk moment. How you tell your prospective partner will have a lot to do with how they interpret the news. They will mirror your attitude, so don't be weird. If you believe MS is going to ruin your life and makes you a less desirable partner, so will they.

Don’t apologize 
You are not damaged goods. Fuck that. Don’t let anyone allow you to question your worthiness of finding love. 

Get ready to get real 
Your partner might have his or her own secrets to barf out. Vulnerability begets true confessions, and you may find yourself hearing all about their bad credit, hoarder tendencies, or unfortunate tattoo. According to something definitely factual I read on the internet, 96% of people are keeping secrets. So, think about that. Maybe your secret won't seem so bad.  

Educate 
Be ready with some resources you can recommend (cough, Tripping On Air). It's hard to believe, but not everything on the inter webs is legit, and you don’t want anyone deep-googling worst case scenarios. Try to be chill, as you may have to field some dumb questions and a confused "But, you look so good! 

Hold-up 
It probably took you awhile to come to terms with MS. Thoughtful people who consider all possible outcomes make good partners, so allow some time for them to figure this out. 

Check yourself
Remember you’re a prize, and if you’re met with someone who only has tiny un-shareable plates, don’t take it personally. Some people will be scared off, and that’s their journey. It’s not you, it’s MS. Drink a bottle of Beaujolais with your bestie and continue swiping. 

As for Carrie, she kept putting herself out there. She found herself crushing on a new guy. 

Mid-relapse. 

He was crushing on her too, but oblivious to her health status.  When he finally asked her out, she was literally weak in the knees. She accepted his invite just as he noticed the bandage hiding her steroid IV site. When he asked what she’d done to her arm, a million potential lies swirled in her head until finally she just went with the truth; she was being treated for an MS flare. He said “Oh”, and they went back to discussing dinner plans. 

They had seafood. They went to Morocco. They’re getting married later this year. 










PS Thanks for sending all your great questions. Slowly, but surely, I will get to them all. 

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4.05.2018

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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