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The New App That Will Manage Your MS Like A Boss

11 Comments / Welcome to MS. / September 13, 2020 /
The New App That Will Manage Your MS Like A Boss
 
 
 
Having Multiple Sclerosis (MS) can feel like a part-time job – a really lousy part-time job. Like, worse than the one I had in high school where I was forced to wear itchy polyester pants and an I.D. tag with my name spelled wrong; a job where my boss regularly complained about my “subpar attitude” when I didn’t wanna do things like be there on time, or clean the store bathroom (that had never been cleaned), or confront the guy who tried to steal a steak by shoving it down his pants.
 
But you know what my boss never did? Judy never woke me up at 3 am, threatening to make me pee my pants. Sure, my feet were sore after a long shift at the check-out counter, but Judy never inflicted the kind of burning nerve pain that MS causes. Judy never followed me out the door and pushed me off the curb for no reason. Fine, she might have had a reason – maybe more than one – but she never actually did it, because Judy knew that would be assault. But somehow, when MS sends me flying for no good reason it’s a life lesson. 
 
Unfortunately, I can’t quit MS the way I quit Judy (by passive-aggressively not enforcing the ’12 items or less’ rule until my name stopped showing up on the schedule – it’s ’12 items or fewer’, Judy). But there is a way I can feel a little more in charge of my disease, and less like my disease is the boss of me, and it’s all with the help of a brand new tool – Aby App.  
 
Disclaimer: Aby App is paying me to share this with you, which I guess makes Aby the boss of me, but the joke’s on Aby, because, in case you couldn’t tell by my super-professional tone, all opinions are my own.
 
Aby App is a one-stop-shop where you can track your medications, your fatigue, your mobility, your mood, your sleep quality, stress and symptoms. You can even track your activities like shopping, or attending a social function; because, this app knows how much energy getting groceries and attending parties can take. High five!
 
I usually just tell my cat what I’m up to. Why do I need an app for that? 
 
I’m sure your cat’s a genius, but even the smartest cats can’t help you understand your MS. Or maybe they can, but they just don’t want to. This app lets you generate reports (or as I like to think of them, performance reviews) of all the data you’ve entered, which you can then take to your doctor, or even send by email. These reports can provide a clearer picture of how MS is affecting you.
 
But wait! There’s more!
 
The app also provides free workout tutorials, and has lots of juicy articles like, “What to do when MS messes with your sex life”, and even some boring ones like, “Radiological Isolated Syndrome: An MS Precursor?”. It’s everything you want to know about MS, and even some stuff you don’t!
 
That’s a lot of features. How much is this gonna cost me?
 
Aby App is 100% free, because if you have MS, you deserve free stuff. 

Tech is cool and all, but I miss the old days when you could talk to someone.
 
If you’re tired of talking to your cat, the app also has nurses available who will answer your MS questions. (By message, obvi. Everyone knows nobody uses their phones to make actual phone calls. Gross.) 
 
This sounds good, but is this just a Canadian thing? Like bagged milk and ketchup chips?  
 
Fun fact! Canada has one of the highest rates of MS per capita. Aby App offers stories and articles with a distinctly Canadian, maple syrup flavour, in both English and en français, but that doesn’t mean we’re keeping this app all to ourselves. In fact, while Aby App is new in Canada, it’s already available in the US. In France, Germany, the UK, Italy, and Japan, it’s available under the name Cleo. 
 
 
What gets measured gets managed and knowledge is power. As the boss of your own health you need to know exactly what’s going so you can see what’s working and fix what’s not. Aby App is an easy-to-use, thorough tool that will let you show your MS who’s the boss. To sign up in Canada click here.
 
 
 
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How To Be Weird With A Newly Diagnosed Loved One

11 Comments / Welcome to MS. / August 9, 2020
It can be hard to act normal in an abnormal situation. I’m here to help.

How To Be Weird With A Newly Diagnosed Loved One

It can be a confusing and scary time when someone you care about has been diagnosed with a chronic illness like MS. It’s normal to want to do everything you can be supportive, but sometimes your best efforts might come across as, well, a little weird. Here are some common blunders to look out for.
 
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 it’s 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 it’s 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 someone 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 it’s 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 it’s weird

You’d think this would be obvi, but these are questionable 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 it’s weird

Yeah, I heard about that. 
 

How to be weird

Taking my picture at the hospital, mom.
 

Why it’s 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 it’s weird 

I can’t. 
 

How to be weird

Telling me everything happens for a reason, God’s plan or whatevs.
 

Why it’s 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 it’s 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 it’s 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 it’s 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. I know because I had impetigo.
 

How to be weird

Downplaying the good things that are happening in your life.
 

Why it’s 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 it’s 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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Remembering My First Official Day With MS

40 Comments / Welcome to MS. / January 10, 2021


This morning as I wrote the date in my diary: 01.11… I stopped short before writing the year. Not because it’s still a new year and I refuse to accept it, but because January 11th is one of those dates that strikes a chord deep inside my mind. It makes me stop and say, “Oh yeah. January 11th.” This morning, still sleepy and under-caffeinated, when the date finally clicked for me, images from years ago started filling my head in vivid detail, like I was reliving the events of yesterday and not of 2001. 

 
I remember waking up in the canopy bed that was too big for my small student apartment, with the fake fireplace and the moss-green walls. The weather, like it is today, was grey and drizzly, kinda mild for the dead of winter. I remember my dad picking me up in his mini-van to take me and my mom to my neurology appointment. I remember the long hallways of the hospital, the crowded waiting room full of weary faces, and finally, the doctor pointing out 6 white spots on my MRI that confirmed I had multiple sclerosis. I remember the calm with which I’d received the news, and later, the hostility I’d shown the clinic nurses. I remember trying to crack jokes with my humourless neurologist, because even back then I had a sense that part of the burden of this disease would be to reassure others that it’s okay, that I’m okay. 
 
This was not pink in real life. IRL it was scary AF.
I remember the relief my dad felt when he heard ‘MS’ and not ‘brain tumour’, and the discomfort he must have felt when, as I was flipping through pamphlets, scrolling through possible symptoms, I shreiked, “Sexual dysfunction? What the fuck does that mean?”. I remember wondering what the people who’d promised me “Pretty girls don’t get diseases” and “The good Lord would never let this happen to someone like you”, were going to say now. I remember sitting on my bed, next to my mom, making her call my friends and deliver the news. It wasn’t that I couldn’t bear to say the words “I have MS”, it was that I couldn’t bear to hear their reactions.
 
January 11th, 2001 frames the BC and AD of my life. 
The Before and After. 
 
It was a day that moved in slow-motion, where random details worked hard to secure a place in my long-term memory. I can recall its minutiae with technicolour clarity; except, it wasn’t a colourful day, everything was in black and white. I remember going to the movies that night, just to do something normal, to convince myself that life was going to stay the same. I remember that the plot of the film (Billy Elliot), was not distracting enough to pull me out of my own reality. I even remember looking around the theatre, and being struck with that strange feeling that comes when the world stops for you, but keeps moving for everyone else. Like, why wasn’t everyone leaving the theatre looking as slack-jawed and stunned as I felt? I heard laughter and wondered how come these people didn’t know that EVERYTHING IS DIFFERENT NOW?
 
Psychologists would call my unplanned trip down memory lane an anniversary reaction, which sounds vaguely fun, but isn’t, really. The good news is, it’s a predictable and totally normal response to unresolved trauma, and while it can seriously mess with some, my own experience was nothing more than melancholy that made me wonder if anything good could come from peering into the past, and re-experiencing those early emotions. 
 
Thinking about that day and what it has led to, made me appreciate that being diagnosed with MS is a big fucking deal, and that from time to time, I deserve to pay tribute to that. To say, holy eff, that happened to me. 
 
Someone should give me a present. 
 
But it’s hard to congratulate myself for having gone through something when I haven’t yet made it to the other side. If anniversary reactions are about your brain forcing you to explore unresolved trauma, it would seem that the cure would be to resolve the damn trauma. 
17 years after my diagnosis, I can’t say I’ve done that. The feelings I remember from that day, when I was barely an adult, still relying on my parents, are so familiar, I feel like I’ve failed at the acceptance part of having a disease. I’m a grown-ass woman. Why aren’t I better at this yet?
 
But 17 years of perspective has taught me that MS is a moving target and it’s impossible to get through the grief that hasn’t happened yet. That’s not even grief yet, it’s anxiety and it’s useless, and yes, I really need to learn to properly meditate. And maybe I don’t deserve props for being totally chill about my progression, but I realize there are some props I do deserve. Because, actually I’ve done a really good job of accepting all kinds of shit. Par exemple, my vision sucks, I don’t drive. Over it. The whole catheter thing? In my sleep. Even the use of mobility aids. It’s tough, but so am I. And that’s the real lesson of the past 17 years. I’m still gonna freak out from time to time, but at the end of the day, I’m pretty resilient. I’m still here.
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10 Secrets I’d Tell My Newly Diagnosed Self About MS

21 Comments / Welcome to MS. / May 8, 2021
 
 

10 Secrets I’d Tell My Newly Diagnosed Self About MS

If I could travel back in time to 2001 when I was newly diagnosed with multiple sclerosis, the first thing I would tell my younger, stupider self would be to, “Pour one out for those cargo pants. You don’t need pockets on your knees. You have, like, 16 bags.”

And Younger Me would be like, “What’s with all the rips in your jeans? Are we poor in the future?”

And Future Me would clap back, “Nice chunky highlights, cough”.

And Younger Me would be all, “Your eyebrows? Are enormous. Is there a muppet trend happening in the future?” This would go on for awhile until we both realized that neither of us could win; our bitchiness being perfectly matched.

After we’d hugged it out and established a shade-throwing cease-fire, Future Me (grown-up, classy and chill), would re-introduce myself to Newly Diagnosed Me (naive, mouthy and hysterical), as the devastating illness expert I’d so desperately needed when I’d first heard the term MS. Here’s how it would go down:

Newly Dx’d Me: What the hell is going on and why did this happen? WAIT. Is this because I…

Future Me: No, idiot. You did not bring this on by hosting a wine-soaked Halloween séance. The sudden blindness you went through two weeks later was not God’s punishment for casting a hair-loss spell on your crush’s girlfriend. Trust me. I checked with Science. Sometimes bad things happen to bitchy people, and it’s just a coincidence.

MS Secret #1: MS is not your fault

Newly Dx’d Me: I can’t stop freaking out. What’s wrong with me?

Future Me: Okay, well, what’s wrong with you is a terrible fucking disease, so your reaction is actually pretty reasonable. Take some ugly dishes to the alley behind your apartment and smash them on the ground. This is a dividing line in your life between before and after. Your old self is dying and how you saw your future has completely changed. Grieve. Get it out. 

 

MS Secret #2: You don’t have to pretend MS is NBD.

Newly Dx’d Me: Okay. Now what? 

Future Me: Finish your meltdown and get ahold of yourself. You need to find a new apartment because your neighbours saw you wigging out in the alley.
 
Newly Dx’d Me: Thanks a lot.

Future Me: You’re welcome.
 
Newly Dx’d Me: Anything else?

Future Me: Yeah, stop eating canned ravioli and drinking vodka lemonades. Stop buying bags and pay your student loan. Quit making your mom shake off the MS clinic and answer their calls. Spend at least as much time finding the right doctor as you would finding the right pair of shoes. 

MS Secret #3: Get an MS specialist who isn’t condescending. Get on treatment ASAP.


Newly Dx’d Me: What’s gonna happen to my job?

Future Me: If you wanna buy yourself some time, maybe don’t tell your boss right away. There will be changes, but, the people who can tie their identities to their employment don’t have to do anything to figure out who they are beyond that. They never have to ask themselves, “Who am I without this soul-sucking job that I hate career that I worked so hard for and am passionate about?“ Indulge in your identity crisis, then go find a purpose or two.
 

MS Secret #4: Don’t let other people tell you who you are.

Newly Dx’d Me: I won’t be able to do all the things I used to.

Future Me: It’s true, you won’t. I’m not gonna tell you nothing changes, but I can tell you the best is yet to come. That said, don’t bother showing up to your driving test next month. Get a metro pass and move on. Despite what your mother told you about ‘bus people’, it’s not as bad as you think. Plus this thing called ‘Uber’ is coming. 
 

MS Secret #5: You are adaptable. You get really good at needles.

Newly Dx’d Me: Needles?! What else?

Future Me: You’ll no longer describe an ‘awesome weekend’ as one where you spend all of Sunday chewing on anti-nauseants and sipping ginger-ale while your best friend barfs out her hangover in the bathroom at brunch. This is just personal growth. This will be hard to believe but: 
 

MS Secret #6: Not everything is about MS.

Newly Dx’d Me: Ok, but what the fuck can I do to make this better?

Future Me: First, of all, stop saying fuck.
 
Newly Dx’d Me: What? 

Future Me: Just kidding. But seriously, stop eating canned ravioli, and drinking vodka lemonades. Maybe do a few sit-ups. Go outside.
 
MS is bossy

MS Secret #7: Control and manage the things you can. Exercise. Sleep. Vitamin D.

Newly Dx’d Me: Why bother? My future obviously sucks.

Future Me: MS is hard, but your future doesn’t suck. Just look at our future hair. And we traded the orange apartment in Steel Town for a loft near a castle. The girlfriend spell didn’t work exactly as planned, but we married that crush. Those raccoons that were living on the fire-escape? They’re dead. Now we have a dog. 
 
Jerk

MS Secret #8: You don’t always have to be grateful things aren’t worse, but you still have a lot to celebrate. 

 
Newly Dx’d Me: Fine, cool hair, but is that a lazy eye? A walker? Are you effing serious?

Future Me: It’s called a rollator, and it’s name is Optimus Prime. He helped you get around Spain. Show a little respect. 
 
Newly Dx’d Me: Ooh, Spain?

Future Me: I’ve said too much. The point is, you’re smart and capable and resilient.
 
Newly Dx’d Me: You forgot pretty.

Future Me: Obviously.
 

MS Secret #9: Most of the time, you can handle this.

Newly Dx’d Me: Most of the time?

Future Me: Every now and then you lose your shit, and are impossible to be around. And yet…
 

MS Secret #10: You’re not alone.

Your best friends and family are there to carry your shit, to drive you places, to listen to your meltdowns. When you think you can’t deal, you give it the The Banker. And when you need to connect with people who really get it, you have a whole tribe of Trippers supporting you. 

Newly Dx’d Me: That sounds weird, but I guess, maybe I can do this.

Future Me: You can. You do.

Newly Dx’d Me: Okay, so if you’re from the future, what about lottery numbers, or stock tips?

Future Me: I dunno, I wasn’t really paying attention. Computers?
 
Newly Dx’d Me: Seriously? Fine. I’ll just take my three wishes then.

Future Me: OMG. Stop touching my belly. I’m not a fucking genie.  
 
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What? But, you look so good!

15 Comments / Welcome to MS. / October 29, 2019
Pfft. Just so we’re clear. This doesn’t mean you actually look good. I mean, you’re probably not bleeding and there’s a good chance you’re standing up.  Maybe you’re wearing lipstick. You don’t look bad but that doesn’t necessarily mean you look good either. It means I can’t tell what’s wrong with you just by looking. It means WHERE’S YOUR DAMN WHEELCHAIR?


duh, wtf were you expecting?

If you have relapsing-remitting MS (RRMS) chances are you’ve heard some version of this. It’s not even unique to multiple sclerosis. It’s a refrain familiar in all chronic disease communities where invisible illness is common. “But you don’t look sick!” is what comes immediately after outing yourself with some dreadful but mysterious condition. 

Is there something about a disease like MS that renders its victims exceptionally attractive? Don’t get me wrong. I love hearing about my good looks and great hair, but rather than feeling like a true compliment, this one smacks of disbelief; of incredulity there could possibly be anything wrong. I was once asked ‘Are they sure you have MS? You don’t look sick.’ I was tempted to say ‘You don’t look ignorant’, but of course, she totally did. (She was wearing Crocs.) The whole thing feels like a sneaky accusation of phony fakery. Of laziness. Of ‘It’s all in your head, you whiny whiner’. Let’s face it. ‘But, you look so good!’ is ig. Over and again it compels us to provide proof we are actually suffering. 


I hate this sentence.

I could list all the invisible ways in which MS affects me. And I’ve totally blurted out way more than I’m comfortable with, to nosy rando’s no less. But there’s nothing I can say that’s gonna make the world sit up and get it. And why should it? There are a bazillion catastrophes at any given moment, and nobody can understand or relate to all of them. It would be exhausting and emotionally unbearable. The best response I can hope for is the benefit of the doubt. You don’t know, maybe you wanna learn, maybe not, and that’s cool too. 

Because why is it so important people know we feel like garbage, anyway? What drives us to try to prove we have a disease? Why do we get our backs up when half the time we’re trying to pass for normals anyway? It’s frustrating when others can’t see or understand the limitations of MS. There are practical implications, and the last thing anyone struggling through anything needs is to get the side-eye of doubt from some jerk. When that side-eye is coming from friends, family or coworkers it’s even worse. That raised eyebrow is adding insult to injury and it hurts.

And then there are our own unhealthy judgements. When I see that suspicious look, my own doubt is reflected. I can’t see my symptoms any more than you can, and most of the time I think if I just try harder I’ll be able to walk this block, clean this tub, make this supper, drive this car (just kidding guys, I’m LB, duh). We’re hardest on ourselves. While we suspect you think we’re not trying hard enough, we wonder if it’s true. We repeatedly ignore the messages our bodies send and try to rally. The physical struggle might be about the strength of our bodies on any given day but the mental one is often a battle to simply will ourselves to do that which, based on how we look, we think we should be able. What we need to tell ourselves is the same thing we need others to understand. 

MS is real. MS is hard. 

If some poor befuddled person is driven to reconcile what they see with what is purported to be reality and thus wants to learn about MS it is fortunately really easy. (Hint: Google). There should be no pressure to explain the finer points of what this life is like. You don’t owe anyone an explanation of something so personal. 

We’re all curious, judgemental bitches from time to time. Let’s show compassion, and before we glibly assess anyone else’s anything, pause a moment and ask how we could find out more. We have no idea what battles others are fighting just as they can’t see ours.

It would go a long way to hear ‘this must be difficult’. A simple nod to what we’re dealing with. MS is complicated. If you’d like to know more about what it’s like, please get drunk and tie your legs together. Or, you know, Google.
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