6.04.2018

How To Be Weird With A Newly Diagnosed Loved One

My next edition of Ask Me Anything About MS, deals with what happens when a diagnosis of multiple sclerosis is received. Spoiler: Everyone wigs out and things get awkward.

Audrey Larkins asks: 
Hi, Ardra. I just stumbled onto you. I'd love to know what you would say to someone newly diagnosed in their early 20s like me, like yourself. What is the most important piece of knowledge you would choose to pass to them?

And nooyool2018 asks: 
Knowing what you know now, what would you say to a younger you when you were diagnosed with MS?

Answer:

So, my answer doesn’t totally match these questions and that’s because I already wrote this post about how I used my white-witch time-turner skills to travel back to my own dx and give myself the best advice ever, which you should totally read. But first.

Since it’s not just the newly diagnosed who need a little insight into this especially fucked-up time, but also everyone around them, I’m offering up some tips you can passively aggressively post to your social media in the hope that your most blundering friends and fam will be like, Shit, Am I being weird? I better read this, stat


It can be hard to act normal in an abnormal situation. Lucky for you, I'm here to help.


Disclaimer: This is the part where I remind you that I'm just a blogger with a big mouth. My own love language is mostly gin and sarcasm. This is what I needed, but everyone is different. 


How to be weird:
Ghosting because you don't want to see your loved one ‘that way’. Or maybe you’re worried you’ll say the wrong thing. Maybe you just hate being around sick people or hospitals. 

Why this is weird: 
You assume the sick want their space, to be left alone to process their scary new reality. That’s me giving you the benefit of the doubt. But, if you’re just ick’d out around illness, it’s time to get over yourself. It’s okay to not know what to say; even saying the wrong thing is better than saying nothing. Text. Call. Show up. Otherwise, it can feel like you can’t handle it, or worse, you don’t care. 


How to be weird:
Saying things like: “You’re gonna beat this; you’re a fighter.”, “You’ll never end up in a wheelchair." 

Why this is weird: 
People don’t get pulverized by MS because they didn’t try hard enough. Hope is great, but you’re not a fortune teller, or maybe you are, but that’s not a thing, so you should probably stop pretending you can predict the future. If shit goes down and MS does its worst, these kinds of remarks can lead to guilt and self-blame on the part of the patient. And you didn’t want that. You only wanted to make me feel better.


How to be weird: 
Comparing this to your sister’s co-worker’s aunt who has MS and is like, totally fine.

Why this is weird: 
You don’t actually know Aunt Franny, or that she’s totally fine. Multiple Sclerosis can sometimes be what’s considered an invisible illness. MS is vastly different in every person; no two cases are alike.


How to be weird: 
Comparing this to your mom’s neighbour’s niece, who had MS but is like, totally dead. 

Why this is weird: 
You’d think this would be obvi, but these are dumbed-down times, people. There’s no need for you to remind me about Annette.


How to be weird: 
Planning a secret girl's weekend to NYC and not inviting me because you don’t think I can keep up. 

Why this is weird: 
Yeah, I heard about that.  


How to be weird: 
Taking my picture at the hospital, mom.

Why this is weird: 
For the love of vodka don’t post anything to social media. It’s not your news to tell. 


How to be weird:
Referencing kale in any way.

Why this is weird: 
I can’t.  


How to be weird: 
Telling me everything happens for a reason, God’s plan or whatevs.

Why this is weird
If that’s your belief system, cool, but don’t assume it’s mine, or that I’ll feel better knowing you think that some higher power has it in for me. Ask Jesus what I did to deserve this on your own time. You don’t get to decide this is a blessing in disguise. 


How to be weird
Asking, "What can I do?"

Why this is weird: 
Just do it, Nike. Figure it out. Wash the dishes, walk the dog, get the groceries. When going through the trauma of a new diagnosis, even simple decisions like red or white, can feel like choice overload. (Hint: it's summer so, rosé.)


How to be weird: 
Saying things like "This is just a minor setback, a bump in the road." Or, "Turn your wounds into wisdom."

Why this is weird: 
Don’t give me any of this Oprah bullshit. Everybody that ever lived already knows that bread is awesome, and nobody needs these useless platitudes. Let the newly dx’d indulge in their drama for 15 minutes. We have the rest of our lives to act strong and reassure everyone around us that we’re actually okay. 


How to be weird: 
Qualifying your own problems with "But that’s nothing compared to what you’re going through".

Why this is weird: 
Yeah, your bad credit or that time you had impetigo is nothing compared to my incurable brain disease, but constantly saying so is like saying ‘things are tough for me right now, but thank God I’m not you’. Don’t do it. Everyone has their shit. And impetigo is gross. 


How to be weird:
Downplaying the good things that are happening in your life.

Why this is weird:
Just like shielding me from your problems, not sharing the good things that are happening because you’re worried about my fragile psyche, robs me of my role in our friendship. Most of this advice boils down to just be normal. You can’t solve MS, but you can help me remember that I’m still the same me by being the same you. Keep feeding me gossip and Miss Vickie’s chips, and know that I can handle more than one thought at a time.


How to be weird:
Pretending you’re not just as upset or afraid as I am.

Why this is weird:
I'll always remember the time, months after D-day, riding in the car with my girl-boss bestie, Lisa, when we both broke down and ugly cried over what I was going through. After weeks of feeling like I was in an alternate universe, where I was the only one aware of the freaking apocalypse, I felt validated to be reminded that people who loved me were also impacted. You might assume it's obvious, how much you must hate this too, but I didn't feel protected by those who kept those feelings from me; I felt more alone.


A new diagnosis is a scary af time. I remember feeling most supported by presence and presents. So, remember to show up, but like, bring stuff. Because if ever there is a time to be wrapped up in a cozy blanket of love, it's during the trauma of diagnosis. If that blanket is made of cashmere and you get to keep it, even better.  








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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 régime 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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