Life hacks

How To Share Your Story As An MS Advocate

A version of this post first appeared in Aby: the app for people living with MS. All opinions are my own.

How To Share Your Story As An MS Advocate

There’s never been a better time to become an MS advocate, influencer, blogger, vlogger, Tiktoker, ’grammer, podcaster, whatevs. Until relatively recently, the main resources for people looking to learn about an MS diagnosis were medical professionals and nationally recognized non-profit organizations. But patients are experts in a way that doctors, drug companies, and MS Societies could never be, and first-hand experience is an essential part of understanding any chronic illness. Social media has become a powerful platform where advocates can help shape an uncensored and nuanced picture of what it really means to live with MS.

MS advocacy and story-telling can:

  • Help family, friends, and coworkers better understand the impact of MS
  • influence donations and social change
  • alleviate feelings of loneliness by facilitating connections with others who ‘get it’
  • encourage information sharing that may be helpful for managing and understanding MS

When you’re living in a body that feels like it’s calling all the shots, it can be empowering to take ownership of your story. If you’re ready to share your unique expertise, here are some of the tools in my MS influencer kit:

Be niche

I may write about diet, fashion, and travel, but they’re all through the lens of MS. I won’t post random pictures of my dog being cute. Everyone’s dog is cute. I will post about the curious reaction I used to get when people saw a disabled woman taking her three-legged dog for a hop. I make my post about MS. If you’ve decided to become an advocate for your chronic illness, you’ve already identified your niche. But, is there a niche within your niche? Perhaps it’s moms with MS, or the LGBTQ community and MS, or paediatric MS. If you can dream it, there’s an audience for it.

We both need a bath.

Find your voice

Develop a strong point of view and lean into it. Figure out what’s unique about you and your story. Be truthful without writing what you think people want to hear–you can’t write for everyone. Authentic stories are better than sugar-coated ones.

Create quality content

Creating excellent content is the most important element to being a successful MS advocate. Be knowledgeable about your subject matter. Fact-check everything you publish, and be careful not to spread false information. Pay attention to grammar and spelling. Credibility is key.

Establish good habits

Readers make better writers. And so does practice. Get in the habit of writing every day, even if it’s just a few lines in a journal. A daily self-analysis can help you become a boss at articulating your life with MS.

Keeping a diary is a great way of documenting your hair transformations while getting your 10 thousand writer-hours in.

Set boundaries

You own your story and it’s yours to tell. The more personal and vulnerable you can be, the more your content will resonate. However, only share what you’re comfortable with. When in doubt, ask yourself, “Would I be okay if this were published in the New York Times?” If you’re not cool with your worst enemy reading about your bladder problem, don’t write about it.

Keeping up with social media, posting, and interacting can be exhausting. Remember that you have a chronic illness and set boundaries. Late night screen time can disrupt sleep and your ability to wind down.

Build your audience

Post regularly. Use hashtags. Be active on more than one platform, and vary your content as much as possible. Look for opportunities to guest blog. Contact MS organizations who are always looking for patient stories. Interview other MS advocates. If they share your work it will drive a broader audience to your channels.

Don’t post and ghost

Engage with the MS community. Comment thoughtfully and regularly on similar blogs and content. Follow back and make an effort to respond to everyone who comments or messages you.

Embrace the competition

There’s only one you. The internet is a vast and infinitely expanding space, and there’s plenty of room for all good story-tellers. Curating and sharing your community’s quality content positions you as an expert in your niche, so share generously. Remember, everyone’s MS is different. You’re not here to speak for MS. You’re here to speak for your MS.

If you have MS, you’ve got a unique story to tell and I want to hear about it! Please share your advocacy in the comments.

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10 Reasons Why Laughing At MS Is The Best

This post originally appeared on Damsel in a Dress.

I’m Ardra and I write Tripping on Air, a lippy blog about my life with multiple sclerosis (MS). People tell me it’s funny and I believe them because I’m an egomaniac. Lisa asked me to write a guest post about why I write with humour, about something so effing awful.

Lisa has EDS, and you should follow her on Insta.

Lisa is lazy or she just had surgery or whatever, because she already knows the answer – she writes with humour too and is funny af. I did not have surgery, but I am also lazy, so lucky for me the answer to her question is easy. Mostly because I stole it from the late, and brilliant, personal-calamity writer, Nora Ephron.

“When you slip on a banana peel, people laugh at you. But when you tell people you slipped on a banana peel, it’s your laugh.”

Replace “slip on a banana peel” with “pee your pants at the mall” and this pretty much sums up why I write about my life. I control the version. You can’t whisper behind my back about the tragedy that is my life because I’ve decided it’s a rom-com instead. Before I started blogging it felt like everyone had a different version of what it’s like to be me. But I own the rights to my stories, and I want to tell them in my own words. It just so happens that a lot of those words are swear words. I didn’t set out to write a ‘funny’ blog. Humour is just how I tell stories.

Laughter is the best medicine

When it comes to comedy, science is on my side. Turns out, using jokes to deal with terrible shit is good for you. And while your actual medicine is probably the best medicine, if you have a chronic illness like MS, you already know your medicine is kind of bullshit or you wouldn’t still be sick. The good news is laughter does have some serious health benefits. Some smarty-pants people at Johns Hopkins say laughter can help with things like sleep and memory; it can improve your immune system, relieve pain, curb stress, and help with depression and anxiety. If laughter were an actual drug, we’d be buying it in a back alley from a shady dude named Cheeseburger.

Laughing burns calories

This is near the top of my list because, as I mentioned, lazy. According to science, laughter stimulates organs like your heart and lungs. It can increase circulation and muscle relaxation. It’s like exercise without having to get sweaty. Or put on a bra. Sign me up.

Laughing helps us listen

Listening to anyone talk about illness is probably not the way you wanna spend your Friday night. Or any night. It can be sobering. It can be depressing. It can be boring. Laughter is like a shot of vodka  spoonful of sugar to make the difficult information go down. If you can make the darkest message funny, it’s less of a buzz-kill and easier to hear.

Laughing comforts

Why should I care how you feel when I’m the one with the terrible fucking disease? Well, if you’re sad I’m sad, and if you’re scared I’m scared. Humour is a way to comfort others and let them know I’m okay (and not terrifying to be around). Sometimes it’s in convincing others that I convince myself. Being funny is kind of a survival strategy.

Laughing releases tension

Humour can diffuse an awkward situation. It provides a tension release that says “Oh, thank God. I don’t have to be sad anymore, because the sick girl said I could laugh”. For the one cracking the jokes, comedy can help reinterpret a situation in a way that’s more bearable.

Laughter can manipulate you into feeling something other than pity, grief, superiority, gratitude that your life isn’t mine, or whatever other uncomfortable feeling you’re experiencing

Disease, illness, disability, whatever – it’s all normal. But we don’t treat it that way. People get weird around disease. Be weird on your own time, because when you feel those things around me, I feel them reflected back. And it sucks. Humour can help normalize things, even humanize things, remind you I’m still the same. What’s more, comedy can break taboos, and challenge society’s messed-up ideas about who and what people with illness are.

My improv class circra 2015. Love these dorks.

Laughter is an expression of resilience, it’s powerful

You could have been executed for telling a joke against the Nazi regime, that’s how much bad guys are threatened by humour. Satire and jokes have always been a form of resistance. Even if MS is technically in charge, making fun of the enemy is a weapon that can make me feel superior, give me a sense of ownership over a situation that was imposed upon me. MS is the evil dictator that needs to be taken down a peg. I’m better than you, MS. You can take my legs but you can’t break me. I will not be compelled to suffer. You’re not the boss of me. And so on.

Laughter is contagious – like the flu, but more popular

Laughter forces us to live in the present, and grounds us in a positive moment without having to, like, actually meditate. At its most powerful, laughter is a shared experience that strengthens connections. We like people who make us giggle, and who guffaw at our jokes. It’s like saying “I get you. I know where you’re coming from.” It’s validating.

My first time doing stand-up. But like, sit-down.

When laughter is bad

Like all good drugs, even laughter comes with scary side effects like headaches and hiccups. Additionally, laughter can actually make you pee your pants, and in rare cases – I kid you not – laughter can provoke a fatal reaction. You could literally die laughing. Ever been tickled? You could suffer an abdominal hernia, or inhale foreign bodies and choke to death. And that’s not funny. Or is it?

Go forth and laugh at your problems

I can’t tell you to go be funny and all your problems will go away. To be honest, I don’t actually think my disease is funny at all. And not all of my blog posts are funny either; in fact, I’m sure there are some who think none of them are. (They’re wrong.) I spend the overwhelming majority of my time feeling frustrated, sad, or pissed about what’s happening to my body. I scream and cry as much as the next person. It’s exhausting. Finding the literally sick joke in a serious situation is a way to escape those negative feelings. It’s cathartic, it’s healing. If you haven’t already, you should try it.

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How To Pick Your Word Of The Year (when you have MS)

How to pick your 2020 word of the year when you have MS.

New Year’s haters, I see you. You know this meaningless milestone is too expensive, too overrated, too loud, too shiny, too tipsy. I’m not gonna fight you on this, but I happen to love New Year’s (check the receipts here, here, and here). And not just because I’m also too loud, too shiny, too tipsy. I love New Year’s because there’s something magical about the energy of a room full of people counting in unison, under the champagne-fuelled suspension of disbelief that allows us to imagine, if only for 10 seconds a year, that life could change for the better at the stroke of midnight.

This is how we do it.

When you have a chronic progressive illness like MS, it’s hard not to think about the future without fear and foreboding. How drunk do you have to be to believe the best is yet to come when you have a disease that, by definition, is supposed to get worse? 

Exactly this drunk

While I have mixed feelings about the merits of hope, I’m sliding into the decade feeling like maybe it’s time to press pause on my realism, and wondering if it’s possible to bring some of the intoxicating NYE vibe into my year without actually having to be intoxicated all the time. 

Enter word of the year

The good news is, resolutions are canceled. It’s 2020, and the new trend is to choose a word of the year: one word; a bespoke mantra to help set your intentions for the future. 

Par exemple, if I wanted more exercise in 2020, instead of making a resolution to hit the gym 5 days a week, I might make my word of the year “move”. If I wanted to get ahead at work, or finally get rid of those pesky dragons, I might choose “slay”. 

A word of the year is more chill than a bossy resolution. Your word doesn’t have to be about climbing mountains or corporate ladders either. You don’t even have to pick a verb. Your word could be “peace”. Or “pizzazz”. Or “dry-shampoo”. You could pick two. You don’t have to pay for them.

How to pick your word of the year

Think about what you want out of the months to come. It’s easy to say “fuck 2019; die already. But what is it about last year that you want to leave behind? One of the biggest challenges for anyone with MS is learning how to adapt and coexist with your disease. Picking a word likebreathe won’t cure your MS, but it might help manage your anxiety and help you override your annoying, internal negative thoughts. 

Your word of the year should resonate with you. Your word should move you and empower you. There’s no wrong choice. Fine, “murder probably isn’t an awesome pick. But I don’t know. Maybe you’re a crow, and you just wanna spend more time with your homies. #family

Think about your goals for the year. Is there a person, place, or thing that inspires you? What word describes them? Brainstorm a list of words that you associate with who you want to be, or what you want to do.

Okay, I have my word of the year, now what?

Put your word where you can see it. I mean, maybe sit with it for a few days before you get it tattooed on your face; but when you’re sure it’s your word and you’re ready to commit, put it on your vision board, share it on social, get in touch with Etsy and put it on a mug. Make yourself a visual reminder of your word. 

Even more important than the word you choose is the time and thought you put into selecting it. Whether or not we reach our goals or drop the ball, fresh starts, new beginnings, and New Year’s traditions allow us to self-reflect and clarify for ourselves what we want our lives to look like, and who we want to be.   

So, what’s my word?

Though I was tempted to pick “shop or “cocktail, I don’t need help with those priorities. My 2020 word of the year is “anyway”.

As in, I have MS, but Imma do it anyway.

Doing it anyway doesn’t mean pretending that MS can’t stop me from every little thing I want to do in this life. Or that I won’t experience the frustration, anger, and fear that come with living in this body.

Doing it anyway means I’m not going to let my limitations drive my year. Doing it anyway might mean doing it differently; and yeah, sometimes doing it differently means doing it shittier, but most of the time, shittier is still better than not at all. 

Doing it anyway means I will make room for possibilities, and even the possibility that all of my best days aren’t behind me—that there might be some good surprises ahead, too. I have MS, but I’ve decided to expect great things out of 2020 anyway.

Happy New Year, Trippers.

What’s your word of the year?


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Resolutions To Ignore When You Have MS

 
I love New Years, a holiday dedicated to glitter and gold, to getting dressed up and drunk and making out at midnight. It’s so ridiculously hopeful to believe the incoming year is going to be better, your best yet, when the logical part of you knows full well you’re gonna start the first day of that year with a splitting headache and barf in your hair. It’s even more deluded to expect better days when you’ve got a chronic progressive illness like Multiple Sclerosis. But here we are, liquored up on optimism (and liquor). 

I’m ready for you, 2019.
At the end of the year it’s natural to take stock of what we’ve accomplished and what’s left to do. When it comes to living with MS, it’s hard not to look back at the past and assess the damage. It can be harder still to look hopefully at an uncertain future. One where many of us are only daring enough to quietly ask the universe that we just don’t get worse.
 
When we do find ourselves ballsy enough to ask for more, we might be motivated by the feeling of running out of time. Bucket List items pile up with the pressure to do all the things that require strength and vitality ‘while we still can’. 
 
But what’s so great about Bucket Lists and New Years Resolutions anyway? For many, these lists are filled with the things we think we should do, and not the things we actually want to do; the fantasy versions of our lives that feed our egos and let Instagram know just how cool we are.  
 
Buckets are for washing floors and occasionally vomiting into. They are poor vessels for the safe carriage of our most precious hopes and dreams.
You don’t need a bossy list to remind you of your unmet potential. That’s what parents are for. If you have a chronic illness like Multiple Sclerosis, I’m here to sift through some of the most popular resolutions; to figure out which ones are worth the Bucket List and which ones you can put on the Chuck It List. And if you don’t like it, that’s cool. Having MS should be an automatic pass on all the bullshit things you never wanted to do anyway.
  

2019 Resolutions to Ignore and Embrace when you have MS: Bucket or Chuck it

Learn To Meditate: Bucket

MS is stressful. And painful. And exhausting. Meditation can help relieve stress, the perception of pain, and fatigue. I’m a smart person and at least an average breather. So, why is it so hard for me to just close my eyes and move some air? Because, anxiety. Which is precisely why this is the year I’m actually gonna figure this out. 

This session happened Jan 17 and was my attempt at a resolution last year. My own mother just told me “thinking about stuff is just as good as meditation”. By “stuff” she means shopping. Someone please keep me accountable.

Skydiving: Chuck it

A classic Bucket List item; they should call it sky-dying, because it’s basically a dress-rehearsal for a terrible and unnecessary death. I am well acquainted with the feeling of free-falling already, thank you very much. 
 
Alternative: Watch Alive in my centrally-heated apartment while enjoying some non-human based snacks.
 
 

Drink More Water: Bucket

It’s tempting to turn into a camel when dealing with a nagging MS bladder. But not getting enough H20 can worsen fatigue and lead to bigger problems than peeing your pants. UTI’s suck, can cause even more incontinence, and infections can lead to pseudo-relapses that can be difficult to recover from. The good news is that Drink More Water is the laziest, easiest resolution ever. If you wanna put something on a list that you can actually accomplish while feeling like a smug wellness expert, start carrying your glittery pink S’well everywhere, and talk annoyingly about how getting your 64 ounces has literally changed your life. 

Change Your Diet: It’s complicated

If you’ve got a chronic illness you’ve definitely had someone scream in your face about a miracle food-based cure. There are a tonne of plans that claim to positively impact MS, but there is no universally agreed upon diet. There’s exciting research happening in this area, but if you’re thinking about trying Swank, Wahls, Keto, OMS or whatevs, remember that 65% of vegans eat Burger King when they’re drunk. So. 
  

Learn A Language: It depends

Cognitive function can be a concern for people with Multiple Sclerosis, and one of the best ways to make your brain stronger is to learn a new language. Then again, we’ve all heard that English is the hardest language. If you’re still reading this, then congratulations. You already speak the hardest language. Even if you flunked high school English, you’re probably still pretty good. 
 
Alternative: Watch a foreign movie. Don’t worry. There are subtitles. Oh, you don’t even want to do that? That’s what I thought.  

Start Flossing: Bucket

Having MS means blaming all my problems on brain damage, but it turns out you can still get cavities when you have a chronic illness, and the only thing worse than having MS is having MS and needing a root canal. Plus, repeated use of prednisone can mess up the bones that support your teeth.   

See A Sunrise: Chuck it

You know what’s better than a sunrise, right? Fucking sleep. Nerve pain and needing to pee, as well as 7 thousand other MS-related things, could already be contributing to insomniac nights and narcoleptic days. If you have MS, you need sleep more than your average bear. We heal when we sleep, and lack of quality z’s can contribute to problems of cognition, fatigue, balance, pain and bitchiness. 
 
Alternative: Re-watch Before Sunrise, and eat two bags of Sunchips. 
 
Life hack: This is a sunset. It’s basically the same thing.

Exercise More: Bucket

Fatigue and muscle weakness can provide easy excuses for not prioritizing exercise when you have MS; and frankly, I look like an idiot wearing a Fit-bit. I know this because some confused Normal recently asked me why I wear one. Just because I use mobility aids to get around doesn’t mean I can’t have fitness goals, Joel. Measuring my steps helps me recognize MS trends. Not like cool, Chanel fanny-pack trends, more like personal disease progression trends.  

Climb A Mountain: Chuck it

I said exercise more, not exercise crazy. I don’t know why anyone would want to climb a mountain. I don’t even want to climb the stairs. Did you know it can cost upwards of $30k to climb Mount Everest, and you could DIE? 
 
Alternative: Literally anything that doesn’t cost money to be cold and maybe die. 
  

Stop Smoking: Bucket

Boo. Hiss. I hate you. I know. You already know smokers are jokers, and if it were easy to quit you’d already be doing it. I didn’t want to be the one to tell you, but apparently neither does your doctor; because according to some reports he’s afraid of you. But here’s why you should consider it. Smoking can make MS disease progression worse. Smoking can hasten the time it takes to go from relapsing remitting MS (RRMS) to secondary progressive MS (SPMS). The reallgood news is that quitting may delay MS progression. 


Sure, smoking looks cool, but it’s just too risky.

Join A Club: Bucket

Feelings of loneliness and depression are 12 times more common in persons with MS. Loneliness can have as difficult and dangerous an impact as the worst of what Multiple Sclerosis can do. If you are struggling, look for resources. If you aren’t struggling, reach out to those who are, and protect yourself by investing in relationships and building your own social capital. 
 

Write A Book, Go Back To School, Take An Exotic Trip: Bucket

If you have MS, you got a raw deal. Let your dx give you permission to prioritize doing the thing you’ve always wanted to do. Don’t just put your dreams in a crappy old bucket. Realize that Someday isn’t a real day, and put your goals on project status.
 
Happy New Year, Trippers. What resolutions will you ignore? Which ones will you embrace?
 
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3 Things You Need To Be Happy (With Or Without MS)

3 Things You Need To Be Happy (With Or Without MS)



Lately I’ve been waking up in a good mood, which is noteworthy because normally I wake up crusty, even a little bitchy. I can hardly be blamed for being unpleasant following a spastic, or painful night. Multiple Sclerosis doesn’t sleep and it doesn’t want me to either.   

 
But there’s something about October that gets me out of bed without shaking my fist at the sun. More than pumpkin everything, new boots, and autumn leaves, The Banker and I tend to travel in the fall when the weather is manageable and so are the crowds.
This October’s plan to celebrate our anniversary in Paris was paying dividends for weeks. When I couldn’t sleep, I was planning my travel outfits. In anticipation of a visit to Versailles, I was nerding out on the life of Louis XIV. When I was shoving kale into my smoothies I was promising myself out loud that I would soon be consuming my body weight in camembert. I had effectively turned 5 days in the future into a part-time hobby in the present. 
 
A past trip to Paris: happiness = a cheese trolley and unlimited barrels of wine.
So you can imagine my heartbreak last week when I opened an email informing me that the too-good-to-be-true discount airline with whom we’d booked was in fact, too good to be true. Bankrupt mother-fuckers. With our trip just 16 sleeps away, my new hobby became cancelling reservations, dealing with insurance claims and trying to get at least some of our money back. 
 
Why are you telling me this terrible tragedy? I clicked this bait to figure out how to be happy with MS and this is literally the saddest thing I’ve ever heard. #thoughtsandprayers
 
I know. If you’re looking for me I’ll be in all black and a lace veil until my birthday, 94 days from now. The point is, all this sadness got me thinking about how fast I went from happy with anticipation to covering the mirrors in mourning; and I realized, that yes, my would-be trip to Paris is a big fat bummer, but I’ve been consoling myself with the other things I have to look forward to, like the bottle of wine I’m gonna drink tonight, the Halloween party we can now attend, and the sweater I’m gonna buy, because my trip to Paris just got scrapped and I deserve it.  
 
But wait, if you have MS how can you be happy? I’d rather be dead than have a disability, and you didn’t even get your Make-A-Wish.
Many assume that people with disabilities couldn’t possibly live full lives, that they must be sad all the time. That’s messed up. When I was first diagnosed, I too assumed this life would suck. I mean, that’s what we’re lead to believe. And it’s true that MS sucks. MS makes my life hella difficult. 

But a difficult life doesn’t have to be a miserable one. 
 
Just as disability and disease don’t determine a sad and sorry existence, perfect health doesn’t guarantee happiness. According to some unreferenced internet psychology, when it comes to happiness the same strategies apply to everyone, regardless of ability, and have nothing to do with career success, wealth, fame, power or even that thing we’re all told you’re nothing without…your health.
 
The happiness recipe:
 
Someone to love 
 
Society has been known to send the message that people with disabilities are less deserving of love, and even that people with disabilities don’t have the same need or want for love. Maybe you’ve said this to yourself. This is some ableist bullshit. 
 
You can love your kids, your partner, your parents, the friends that are your family. Pets aren’t people, but if you’re struggling to find love amongst humans, even your cat is a good place to start (but like, maybe get a dog). 
 
Having someone to Netflix with, someone who’s on your team, who hates the same people you hate, reminds us that we’re not alone, and caring about someone besides our selfish selves can take us out of our own suffering. Love isn’t just a nice to have; it’s a fundamental need to have. 
 
 
Something to do 
 
When I stopped working full-time, the first thing I did was start a list I called Things I Did When I Wasn’t Watching Oprah. I knew I was facing an identity crisis and needed to reinvent myself. What we choose to do with our time reinforces and affirms who we are.
 
My list might look cool now – sassy blogger, world traveler, rollator super-model – but when I was first figuring it out, my list literally had things like, tried a recipe, read a book, used a fire extinguisher. It doesn’t matter what you do, only that whatever you choose to do is just that – your choice; something that matters to you. 
 
Finding your raison d’être can be extra challenging when you have a chronic illness like Multiple Sclerosis. MS can steal your purpose. MS can rob you of the physical resources needed to do some of the things you love most. It’s not always easy, but the more we can figure out how to make empowered choices, even little ones, the less we feel controlled by external forces. 
 
Something to look forward to
 
I don’t know about you, but I spend a lot of time in Anxietyville, contemplating worst case scenarios. And while I still suck at meditation, you don’t have to convince me of how thoughts about the future can influence the present. Fortunately the power of anticipation can also be harnessed for good.
 
The standard remedy for anxiety is to live in the present, but sometimes the present straight-up sucks, and that’s when mindfulness needs to STFU. Having a stash of future rewards you can call to mind can get you through rough moments and bad days. It doesn’t have to be big stuff like trips to Paris, either. If I’m being real, most of my future-reward daydreams are about clean sheet day, or Miss Vickie’s chips. 
 
MS is tough. I will never tell you to count your blessings, keep a gratitude journal, or smile through your bad days. FTS. I already told you I stopped listening to Oprah. You are entitled to every negative emotion that comes with this shit-show. Grieving the losses that a progressive debilitating disease brings is healthy and necessary for well-being. 
 
So, I will continue to worry about the future, rage about the present, and lament what this disease has taken from me. But I can’t live there. It’s exhausting. Most of the time, I’m setting realistic goals, making plans, and chillin’ with my homies; doing the things that keep me going, that remind me – an MS life can be a good life. 
 
So, who do you love? What are you doing? What are you looking forward to?
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How To Love Your Morning Routine With MS

No alarm clock required. 


There’s a lot of buzz right now about morning routines. They’re the latest trend promising your best possible life, though they’re nothing new. Everyone from Sigmund Freud to Steve Jobs had one, and I’m not above taking health advice from dead geniuses. Wellness experts all over the inter webs assure us that the path to perfect happiness and peace of mind starts with a routine that includes things like lemon water, meditation and making your bed, because studies have shown that people who make their beds are more likely to be actual millionaires.  

But morning routines are highly individual. If you’re already a millionaire or tidiness isn’t your thing, that’s cool. Studies have also shown that making your bed provides a cozy home for skin eating dust-mites. Whichever side of the bed you wake up on,  there’s a morning routine for everyone, and for those of us with chronic illnesses like multiple sclerosis, morning routines can be especially beneficial. They can help you:


Feel like a boss (even if you don’t have a job)
Medical retirement means never having to put on pants. This sounds great at first but can quickly lead to feeling like a garbage person. My morning routine makes me accountable to myself. It lets me tick off some easy to accomplish goals that make me feel like I have my shit together. 

Gain some control
I’m a type-A personality trapped in the body of a whatever personality type is the lazy and passive-aggressive one. Chronic illness robs me of what little certainty I think I have in this life, but a routine is something stable, a way to feel like I have a say in how my day’s gonna go. What’s more, doing the same thing regularly is a way to check in and see if today was different than yesterday, making it easier to spot changes in health and address them quickly.

Minimize decisions
Our days are filled with decisions. I only have a limited amount of them in me, and I don’t wanna waste them on what to have for breakfast, because even small decisions are exhausting. Having a routine means you can coast on auto-pilot while the pillow lines work themselves out of your face, conserving precious mental energy for more important choices, like what to binge on Netflix.

Nama-slay, bitches.

My MS Morning Routine

Wake up when I feel like it
Thanks to multiple sclerosis wreaking havoc with my life, making plans for the morning is the last thing I ever want to do. Let’s be clear: a routine is not the same as a schedule. Schedules are for normals, who sleep through the night and can balance on two feet in the shower, whose bodies cooperate enough for them to be accountable to that asshole Father Time. If your well-being doesn’t start until noon? Well, that’s when your morning routine starts. Fuck the sunrise.

Put on a bra
This sounds obvious but for a long time (like years) I didn’t start my day with this step. I was spending the better part of most days alone with the dog. She didn’t care, and she has, like, 6 tits. Alas, I have evolved past the canine. For the last few years, I start every day by putting soap on everything that needs it, and then getting dressed into clothes I didn’t already sleep in (but will probably nap in later).

Go for a walk
I’ve started roaming the long hallways of my condo like a ghost. In an effort to be active all day, I get up and walk the halls every couple of hours for about eleven minutes at a time, more if it’s a good day. Using my rollator, I think about each step; heel, toe, shoulders back, don’t swing the leg, don’t drag the foot, heel, toe. This slow, concentrated walk is almost meditative, which is just another way to say boring, but it reminds me that I’m still walking and that’s something positive to concentrate on.

Make coffee, skip the dishes
Next I make coffee, take my meds, and update my Fitbit. Since I take approximately 7 thousand pills and supplements each morning, this takes awhile, but forces me to drink at least one huge glass of water, which is great because getting enough water is a challenge. If the coffee isn’t quite ready by the time I’m done my meds, I’ll take a quick, guilty peek at Insta, but I try to stay off my phone until after I’ve finished this next step.

Journal and puppy time
This is the reward part of my morning for having shaved my armpits and walked a thousand steps. I curl up with my journal and coffee, and my 60 pound dog climbs into my lap. I’m not writing a gratitude journal about how I’m thankful for babies laughing or the smell of cinnamon. Who am I, Oprah? No. I put aside this time for processing my own narcissistic life. This isn’t advice, guys. I’m just a blogger making shit up.

Breakfast
I always have a smoothie unless I have to be somewhere and don’t wanna have to pee. By the time I get around to making this it’s usually been awhile since I last ate, which is ideal because delayed breakfast helps me get into ketosis which is a whole other thing. At this point I’ll drink my smoothie while checking email. 

That’s it. That’s my weekday morning ritual. Depending on how much time I spend with my coffee and burn-book, this whole routine takes about an hour and I’m ready to take on the world (or, you know, go back to bed).

What’s your morning routine? 






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5 Things I Did Right Last Year & What I Want Out Of 2018

2017 went out with more of a whimper than a bang. I spent a solid chunk of December dealing with disease, mired in fear, and feeling pissed at myself for crying at Christmas. Facing another new year with multiple sclerosis while taking stock of 2017, it’s tempting to tick off a list of things lost, things I’ll never do again. Which is depressing AF. You don’t want to read that self-pitying barf, and I must force myself to agree, it’s way more appealing to look at the blank slate of possibilities for 2018, than to obsess over the ways in which 2017 went off the rails. 

But, making resolutions can feel like we’re announcing our shortcomings. Like we’re publicly identifying the (usually trivial) ways in which we feel we suck. And maybe that’s why so many people hate them. Nobody wants to feel like they’re failing at life. Gross. Building a brag-sheet of last year’s wins can help us recognize just what we got right, and give us the confidence to sign-up for what’s to come. Taking stock of 2017 helps me realize that change is possible. Heck, anything is possible. And isn’t that what the new year is all about?
There is no suck. Only degrees of awesome.

How I Slayed in 2017

Travel
Travel is hard when you have a dumb disease. With its stupid cobblestones and complete lack of curb cuts, Rome kicked my ass last year, as the least accessible place I’ve ever been. I left Italy feeling smug and secretly satisfied at the fall of the Roman Empire. They deserved it. Despite this, I was truly glad I came and saw and conquered. Instead of feeling defeated, I felt inspired to travel more, and to places even further outside my comfort zone. Because as I’ve said before, if not now, never. 

And I don’t believe in never. 
Stopped Singing
For most of my life, singing was a major part of my identity. For a long time, I believed every lesson, every hour spent practicing, every moment of performance, was saving my life. And it was. Until it wasn’t. It’s too long and boring to get into here, but MS fucked it up for me, and as my body weakened I began to feel diminished by the very thing that once made me feel invigorated. After trying for too long to keep it in my life in any capacity, I was finally able to accept that singing was no longer bringing me joy. I walked away, and somehow, felt relieved. 

Memorized All the Words to Despacito 
Okay, I didn’t totally stop singing. I mean, I’ll never stop Beliebing. 

Gave up gluten, sugar, and dairy
Relax, guys. It’s not like I gave up bacon. This lifestyle sounds so crazy hard but I swear to you it hasn’t been. I think it’s partly because I’m good at making healthy food taste like not garbage, and partly because my tummy and neurogenic bowel feel legit better without cheese. Mostly though, it’s because it’s a way to feel I have some control. When I go to sleep at night thinking there’s nothing that can be done for my progressive MS, I quietly tell myself that maybe this diet will help. That tastes better to me than any croissant ever could. And that’s saying a lot. 

Became a glamorous, rich lady
When I was a teenager, I interned at an opera company where my fancy but terrifying employer would get her hair ‘set’ every week. My blue-blooded, bougie-boss was so sniffy and serious, and guys, did I mention terrifying? Like Anna Wintour, but taller and Italian. I definitely wanted to be her when I grew up. Then, last summer, MS finally gave me the justification to be a little more like, uhm, let’s call her Mary

Because, showering is hard. 

As MS worsens, the thought of holding my arms up long enough to dry my hair makes me long for the days of wearing wigs and obscene amounts of cheap perfume. So in July, I splurged on a package of blow-dry’s and now I can never go back. Can I afford this? Maybe not, but I’d sooner give up groceries than go back to washing my own damn hair like a nobody.


Clearly I nailed 2017. I’m high-five’ing myself for what were obviously some kick-ass self-care habits I’ll be bringing with me into the new year. But self-improvement never stops. It’s what makes you better than other people. So here are my goals for the upcoming year:

What I Want In 2k18

Exercise
Yup. The old New Year’s cliché. But hear me out: there’s so much compelling research about the effects of exercise on MS that I’m convinced it’s time to step up my game. I’ve always exercised and I work with a great physiotherapist (#megan). But there’s no reason I can’t be at the gym every freaking day. Even if it’s just 5 minutes. Because 5 minutes turns into 6, and 6 becomes 7, and 7 becomes slower disease progression than if I’d just sat on the couch eating raisins and watching The Crown. I know what you’re thinking: ‘This sounds like Sophie’s Choice’. But here’s the thing. The gym is in my building. Which means, I have time for weight training and binge-watching. (Wait. Were you thinking ‘raisins are disgusting’? Then screw you. Raisins are a delicious snack.)

Minimize Time Sucks
It’s hard not to get sucked down an internet hole when you write a blog; when you’re on your laptop at all hours so you tell yourself you’re “working”. But let’s face it, I’m mostly sucked into online shopping and celebrity gossip. OMG PRINCE HARRY AND MEGHAN MARKLE ARE GETTING MARRIED, GUYS. Like, who am I to ignore living history? Furthermore, what kind of feminist would I be if I didn’t know why we’re all pissed at you-know-who, and you-know-who else, and you-know-who else, and so on forever. Strike this. This is no time to cut back on the internet. I’ll just have to cut something else, like laundry or brushing my teeth.  

Peace
Obviously world peace and blah, blah, but what I’m really talking about is inner peace, and this might be my biggest commitment to change this year. MS isn’t going anywhere, and I need to get my shit together, figure out how to maintain my sanity when symptoms are at their worst and my brain feels like it’s gonna explode. I think this means learning to meditate and finding some counselling that is more reputable than fortune cookies and the occasional episode of Dr. Phil. I’m going to detox my mind and I’m going to do it with help. 

Happy New Year Trippers. Cheers to possibilities, blank slates and optimism. And if you feel like sharing your own ’17 brag-sheet and 2k18 goals, I’d love to hear them. 

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Dumb Things I Did Last Week In Defiance Of MS

You think you can stop me, MS?


Last week I decided I wanted to go to the seriously spooky, grown-up haunted house Legends of Horror at Casa Loma, Toronto’s gothic revival mini-castle that sits just up the street from where we live. For most of October, we could hear the terrified screams of visitors to the exhibit from our balcony, and I wanted in. I had an inkling that this indoor/outdoor 2 kilometre ghost-walk wasn’t maybe the most accessible activity in town, but I ignored that inkling and bought tickets anyway.  

How dumb could I be?

The day before we were set to go, I went back to the Legends of Horror website just to see how prepared I needed to be. I read something advising guests with “physical ailments” not to participate. That seemed a little too broad and ignorant for me, those of us with so called “physical ailments” not all sharing the same limitations or abilities. Plus, they also said it was “not ideal” for pregnant women, which lead me to seriously question what kind of person was making the decisions about who should and should not participate in what’s really just some interactive theatre. 
 
I emailed the venue to get some intel, and was promptly told the exhibit is not recommended for walker or wheelchair users; that there were some stairs and tunnels. This still wasn’t very specific. Like, just how many stairs are we talking about? Note: Sometimes people with mobility aids can do a few stairs.
 

Because FOMO

I was conflicted, and not really sure if this would be too much for me, but the thought of sitting at home with Halloween FOMO while my friends were out having fun, was too much to bear. And since I don’t have a walker or a wheelchair (I have a rollator and a transport chair), technically, the suitability information provided didn’t apply to me. Let’s do this.

 
The Banker suggested we bring Optimus Prime my convertible transport chair; that I walk as much as I was able; that he would push me as needed, and carry OP up any stairs we might encounter. Problem solved. I emailed the venue with my awesome new plan, and asked again just how many stairs we were talking about.
 
This is what they said:
 
“I would still suggest that is Not a good idea to carry that up and down the ‘uneven terrain’ that is part of this Legends of Horror experience.”
 
Aside from the callous reference to Optimus as “that” (rude), this was GREAT NEWS. “Not a good idea, is not a hard no. And those quotation marks around uneven terrain? That was enough to convince me that the terrain might actually be pretty even. Grammar matters, people. Plus, they never did answer my question about how many stairs there were, so I decided it was two flights. Two-and-a-half, max. It would be difficult, but I could swing it. Because here’s the thing Casa Loma doesn’t seem to get: People with mobility aids have a whole spectrum of ability. Not all disability is the same, and it’s not cool to just decide something isn’t available to everyone. Just give us the facts, and let us figure it out for ourselves. 
 

In defiance of MS

 
The night of the show, we bundled up and got ready to get scared. We rolled up to the venue, and a visibly alarmed ticket-taker took one look at OP and said, “Uhm, this is one-hundred-percent not accessible”. I was like, “Whatever. We’ll figure it out”.
 
And we did. In the end, it was like, 15 flights of stairs, in the dark and under a fog machine.  And what took most people an hour, took us well over two, plus a lengthy break at the bar at the midway point. It was actually completely unreasonable for me to have attempted this. 
 
And I’m so glad I did. 
 
In a disease where decline seems inevitable, it’s hard not to measure the passing of time by a yardstick of things I can no longer do. Anything in the grey area of what might be a little too tough or even reckless, forces me to say to myself, “If not now, never”. 
 
So what? It’s just a stupid haunted house. (It was not stupid, it was freaking amazing.) A fun night out with friends doing something a little different, is an experience most take for granted. But there’s this feeling I sometimes get when I’m most aware of MS insidiously creeping up on me, and chipping away at my options. It’s the bittersweet realization that I’m doing something I’ll never do again. It’s the unspoken knowing that, this time next year, I’ll not be physically able to do whatever it is I’m struggling to do this year. Experiences take on added meaning when you realize:
 
This is the last time I’ll do this. 
 
I didn’t think this haunted house thing would turn into a bucket list accomplishment, but I woke up the next morning feeling satisfied I’d experienced something unique and cool, and like I’d kicked some ass, those stairs being way scarier to confront than the wailing banshees and severed heads trying to spook us at the castle. My ill-advised night out was a kind of Fuck You to MS.  
 

My squad

I must thank The Banker who dodged zombies to haul OP up and down all those steps like a damn hero. And thank you to my squad of patient friends, Trace, Lisa, Chris and Peter: I realize it’s extra terrifying to slow-walk through a graveyard. Thank you for not handling me with kid gloves; for not trying to talk me into the cautious, reasonable, thing, and for supporting my choice to keep bulldozing ahead, even when it seems really fucking stupid.
 





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New Year, New You? Simple Resolutions For Uncertain Futures

Dedicated readers may remember this (slightly modified) address. We’re all throwing shade at the past year and the need for optimism feels even more relevant as we dip a nervous toe into the future. Or maybe I’m too hungover to come up with anything new. 

It’s the first day of a shiny new year. The day when all the mistakes of the previous year are behind us, and anything seems possible. By now, a month of partying has been put to bed, its memories tucked safely away on Instagram. My liver and credit card are holding hands and whispering “It’s over. We’re safe now”. The fun is over and as we face that icy, unforgiving bitch, January, it’s hard not to wonder why a new year is something to celebrate when the fête is finie. A beginning that doesn’t require us to actually start anything new. Good news if you just need a mental boost, to symbolically wipe the slate clean of all the injuries and injustices of the past, while you write the wrong year on your cheques for the next month. This is your holiday. You don’t have to change. That’s the gift of New Year’s. It’s up to you. 

Or don’t. Whatever.
For others, a new year means waking up January 1st in last night’s makeup and one shoe, rubbing mascara from your eyes while looking in the mirror and making RESOLUTIONS. Because a new year means a new you. One where you can get fit, find love, take that improv class, quit day drinking, stop using LOL and start being nice to the cat. I don’t know what you’re into. The point is: 

Anything is Possible

Many start the year with big plans only to find themselves failing by February. So, why bother with resolutions? Aren’t they just setting us up for failure? Maybe. But giving voice to our hopes and dreams, saying them out loud, is an important step to realizing them. Even if we never keep our pledges, the act of making them means we take stock, examine what we like, and maybe experience a few moments of gratitude, before rejecting whatever it is we don’t like. 

We get to know ourselves better for having named our convictions; for declaring just who it is we want to be.

In chronic progressive illness, like MS, the measuring of time is tricky business. By definition we’re supposed to, well, progress. Each calendar year is marked by diagnoses, tests, treatment régimes and abilities gradually lost. Ticking time can be a scary contemplation. Resolving to regrow myelin is more futile than resolving to lose those last five pounds. There are certain things over which we simply have no control. 

So this year I’m choosing simple goals. Despite disease and in my never ending pursuit of the best possible life, I will reflect on what it is I love to do, and figure out how I can do more of it. I will think about the people who lift me up and make me laugh, and commit to spending more time with them. I will pay attention to what doesn’t make me feel good, and do my best to avoid those things. With hope and confetti still in the air, today at least, I will say fuck fear, because dwelling on the worst case scenario is a waste of my imagination. 

It’s a new year.

Embrace unrelenting optimism

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How To Survive The Holidays When You Have MS

Step 1: Abandon any hope that your Christmas will look like this.


Growing up, Christmas in my family was a BFD. It still is. Like an insanely, big deal. My mom gets up at 5, anxious to tear into presents and eat pie. My dad only encourages her by throwing open the sash (pre-dawn, natch), to bellow “Merry Christmas”, causing all the dogs within a 1/2 mile radius to lose their shit. Compared to these two, Clark Griswold was a hack. I can hardly be blamed for the sugarplums that dance in my head. It’s in my DNA. 

Unfortunately Multiple Sclerosis is also in my DNA, so being able to fully participate in all the holidays have to offer is easier said than done.


Santa’s secret? It’s mostly Irish cream.
Of course, what happens in December starts in November. And everything seems possible in November. I eagerly say yes to it all, seeing no problem in filling my calendar with concerts, parties, dinners and overall excess. But naive November, with its fall leaves and sense of can-do, is over. It’s mid-December now, which means colds, calories, and credit card debt. The half-decorated tree sits unwatered next to a mound of unwrapped gifts and a sink full of dishes, and somehow I thought I could go to not one, but two parties tonight. And, oh yeah, I promised to bring homemade cookies. 
 
Who do I even think I am?
 
Rather than dropping my phone in the toilet and hiding under the covers for the next ten days (OMG there are still TEN DAYS of this madness), I’ve decided to come up with a plan. Turns out, my main concerns during the holidays are really my main concerns IRL, but in December they’re jacked up on cheap champagne. 

Among them:
  • I won’t have enough energy to entertain or shop for gifts.
  • Changes in diet will eff up my delicate system. 
  • I’ll catch a cold and send my MS spiralling out of control. 
  • I won’t have the strength to do all the fun things. FOMO. 
  • People who haven’t seen me for awhile will be startled by my progression.
  • I’ll look drunk without the benefit of actually being drunk.
Thankfully, all of this shit can be managed. Herewith:

How to survive the holidays with MS

Outsource

Did you know you can get a turkey on the internet now? Yup. A turkey. I’d like to be the kind of girl who can pull off a turkey dinner. And I am. Sort of. Secret sharing time: after deciding it would be super fun to host said supper, when the time finally came, I didn’t know how I was going to will my body into cooperation. Instead of bailing, I unapologetically ordered a pre-cooked turkey. And why would I apologize? I’ve cooked 4 turkeys in my entire life and Pusateri’s has cooked at least 7 thousand. They definitely know better than me. The goal wasn’t to prove I’m an awesome cook (I’m not). The goal was to eat a skin bowl with some of my besties and play fairy godmother to my godchildren. Fait accompli.
 

Drink through it


I know what you’re thinking. Here she goes telling us how alcohol is the solution. And you would be right. But downing 2:1 water for every cocktail is a life hack. You’re welcome. Because changes in my diet will affect how I’m feeling, I really do try to stick to my exercise and sleep routine. And to avoid the side-eyes of those who will blame my loopy gate on liquors, I like to do most of my drinking sitting down. 

Stay away from the mistletoe

 
If you ask me, there’s simply too much touching at Christmas. At a time when passing the peace can feel more like passing the plague, a good quality hand sanitizer is my best accessory. And all the extra scrubbing means I also need a great lotion. I love my l’Occitane.
 

Get online


Duh, I know. This one is so obvious, I don’t need to plug its benefits, but it’s the reason why anyone who gets a gift from me, ever gets a gift from me. Santa is a MacBook for whom I don’t ever have to put on a bra.
 

Cut corners


People are coming over. I’ve known for weeks, and yet here we are shoving shit in a closet. Everything in its place. Sometimes that place is a sky-high fire hazard behind your bed.

Pre-nap

Like pre-drinking, but cheaper. Even if I don’t actually fall asleep, it’s important for me to be totally off my feet for an hour before going out or having anyone over in the evening which is typically a challenging time of day for me.
 

Know when to say Fuck it


There’s good, and there’s good enough (this blog post). I accept that I can’t be awesome all the time and maybe not everyone I’ve ever met is going to get a Christmas card from me this year (Spoiler: Nobody is). And, if I finish wrapping a gift only to realize I miscalculated how much paper I’d need, leaving a small exposed square, so be it. I already ruined the job anyway when I ran out of Scotch tape and decided to use painter’s tape.

Chill

It’s important to make time for loved ones and Netflix is no exception. Because Netflix gets you like your family never will. I like to put downtime in the calendar. It helps me recognize it as a priority. 
 

Just say No


Sometimes I cancel plans. I don’t like to and I feel guilty, or I don’t. Because I know my presence isn’t going to make or break a great shindig. Plus, secret surprise – everybody wants to bail on stuff this time of year. Let yourself off the hook and then don’t be a dick the next time someone flakes on you. (Unless it’s my birthday. Seriously, I will cut you.)
 

Just say Yes


Because often the best nights are the ones where we rally. To get myself out the door when it feels impossible, I always plan a GTFO strategy. I tell myself I’m going for 15 minutes. Most of the time, the energy somehow shows up once I get to the actual event. Just show up.
 

You made it

 
I have a lot to look forward to as we wrap up this year, and when I look at my calendar and think about all the friends and family I’m going to eat, drink and be merry with, I’m reminded that it doesn’t matter if my base boards are gross (they are). I’m taking my niece to see her first Nutcracker. 
 
Merry Christmas and Happy Holidays, Trippers. May you drink too much champagne and kiss someone lovely at midnight on NYE.
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