Month: March 2020

How To Make The Best Out Of Social Isolation: MS Edition

MS has put me ahead of the curve when it comes to hacking life from a distance.

Disclaimer: This post is sponsored by Aby: The app for people living with MS*. All opinions are my own. 

How to make the best out of social isolation: MS edition

Covid-19 is forcing the world to adapt to unprecedented circumstances. While none of us could have predicted or prepared for the sudden and dramatic changes we’ve been forced to make, years of living with MS have put me way ahead of the curve when it comes to hacking life from a distance.

As people are being asked/ordered to shelter in place, bossy blog posts are popping up all over the internet with tips on how to make the most of your time in isolation. And making the most of your time usually means becoming more productive by filling every waking moment with something measurable and important. We live in a world where our worth is measured by how much, and what kind of work we do. 

I was never immune to this outlook. MS has been impacting the work lives and social lives of people with the disease since forever. When I first stopped working, I kept a list   called Things I Did When I Wasn’t Watching Oprah. I tracked every little accomplishment, because I needed to prove to myself; and let’s face it, anyone who ever dared to suggest how nice it must be to “not have to work”, that I had value; that I was using my time to contribute; that I wasn’t eating bonbons and day-drinking; that I wasn’t a waste of space. My list was designed to protect my sense of self-worth, when I was no longer able to define who I was by what I got paid to do. And for a while, it worked.

Since then, I’ve come to realize that contrary to what our modern world would have us believe, productivity does not equal value. Measuring our worth against impossible standards, especially when dealing with a chronic illness like MS, can be damaging to our emotional and psychological health. Productivity might make us feel like we matter, but what happens when situations change and we can no longer accomplish what we once could?

Social isolation and MS

Covid-19 is railroading all of us into submission right now. For many people with MS, it’s a familiar feeling. 

What’s critical to a sustainable sense of self-worth is a belief in our inherent value regardless of our limitations. We matter just because we exist. End of story.

Which isn’t to say you should throw in the towel and give yourself permission to play PacMan in your jimjams all day. I’ve said before that purpose is one of three things we need to be happy. But purpose isn’t the same as productivity. If you’re searching for purpose during this crisis, remember that you are literally saving lives by staying home and doing nothing. You should feel no pressure to write a screenplay, learn Mandarin, or teach yourself to code right now. You don’t have to justify your time at home, now or ever.

While the pressure’s off to use this crisis for a little self-improvement, the consequences of isolation and loneliness can have serious, long-term repercussions. The good news is there are things we can do to minimize the impact. Self-care looks different for everyone, so take from this list what’s useful, and be gentle with yourself.

12 tips to make the best out of social isolation

Maintain a routine

Like Covid-19, MS comes with a lot of uncertainty. Adding structure to your day can lend a sense of normalcy in a world where none of us feels we have any control. Routines are great because they minimize decisions, and decision-making can be exhausting. If you’re working from home, figure out a way to separate your work-day from your home life, or you might find yourself working at all hours. 

Limit news exposure

Yes, we need to be informed, but the 24 hour news cycle can add to anxiety, and anxiety can be as contagious as deadly viruses. I check in once in the morning (and only after I’ve had coffee), and again in the evening (and only after I’ve had a cocktail). I make sure to give myself time to read something non-apocalyptic before going to bed. 

Get your fix of sunshine and fresh air

Unless you are counselled not to, and assuming you are legally allowed, get some much needed fresh air by going outside (maintain a six-foot distance from others) or open up your windows to get an exchange of ventilation. Natural light is important for mood and sleep regulation. 

Stay connected

But like, not on Twitter. In fact, maybe delete Twitter. While we distance and isolate, staying connected in a meaningful and positive way is more important than ever. Don’t just text. Get on Whatsapp or Skype so we can see each other’s faces, and provide each other with incentives to shower. If you’re working from home, set up virtual coffee breaks so you can keep things as normal as possible.

Flake out

Recognize that rest and downtime are productive activities that are essential to wellness, recovery, and even creativity. 

Quarantini and chill

Move

Even if you don’t contract Covid-19, the management of your MS will likely be impacted by the changes we are all experiencing through this pandemic. I’m no longer getting physiotherapy. Even the gym in my building has locked its doors. It’s tempting to tell myself there’s nothing I can do; pass me the chips; but Covid isn’t the only threat to my health, and MS doesn’t give a damn about extenuating circumstances. 

MS will straight-up take advantage of extenuating circumstances. Fortunately there are options like the free workout tutorials on the Aby app, that are designed specifically for people with MS. They’re like Jane Fonda’s workout videos from the 80’s; but, for like, Jane Fonda now that she’s 80. 

Declutter

This might sound like one of those bossy directives, but you’re gonna be spending a lot of time looking at all those papers and whatever is shoved under the sink in the bathroom. Spring clean, purge your closet, do your taxes; get it together, and you will emerge from this cocoon a beautiful butterfly. (I mean, figuratively. Literally you’re gonna look like Tom Hanks at the halfway point in Cast Away, but without a tan. I am not looking forward to learning anything about my natural hair colour.)

Learn to meditate

Ugh. Show me the way. I keep telling you guys to meditate because my brain knows it’s good for me. But it’s Just. So. Boring. The good news is that Aby app is sponsoring this post, and Aby app has a free Mindfulness program. I can’t, in any good conscience, recommend this service to you without experimenting with it myself. Challenge accepted. Namastay tuned.

Get creative

These are unbelievable times. Start a blog, keep a journal, paint it out. You and your descendants will find it fascinating to read about how you weathered this. And creativity is a great way to process calamity.

Support local business

Part of why I love Toronto so much is all the small businesses that are a part of our daily lives. I think of my ‘hood as Sesame Street, and I don’t want us to lose any of the great establishments that make this town so liveable. Also, I hate cooking. Shout-out to my favourite French bistro, le Paradis where I go so often, everyone knows my name. They are offering take-out for stupid prices, and if you’re in the 6ix, I would encourage you to try their $15 boeuf bourguignonne. Mon dieu

My local. Le P has been supporting me through every hair transition.

Support your health

When we’re consumed by a crisis, self-care can quickly turn into self-medicating, and who could blame any of us for wanting to eat a bag of mini-eggs for breakfast or to throw back a couple of cocktails at lunch? It’s easy to give ourselves permission to indulge. I get it. So, do it for a day. Maybe two. Then try to reset because the world isn’t ending; and if you have MS, you don’t need to come out on the other side of this with new health concerns. Aby app has features that let you track your medications, symptoms, and activities, and can help you be accountable to yourself in a time when you may only be able to check in with your doc virtually. 

Be generous

Crisis can reveal character, and we are likely to see the best and worst of what we’re made of during this overwhelming situation. When faced with a threat of this magnitude, a common reaction is to look out for number one. Just as hoarding and panic-buying are more likely feeding our fears rather than calming them, being generous with whatever we’ve got—money, time, blood, or the toilet paper people bought too much of—, can remind us that we have enough. When we help others, we  send our brains the message that we have ample resources; and, that in itself is a powerful stress-reliever.

The extreme measures we’re taking to manage the Covid crisis aren’t about relinquishing control, they’re about taking control. Everything we’re sacrificing right now has saved someone’s life. We are adaptable. We are resilient. We are all in this together. We will get through this.

Stay strong, Trippers. 

*Aby is available in Canada and the US. Outside of North America, Aby is known as Cleo in Austria, Belgium, Spain, Great Britain, Japan, Italy, France, and Germany.

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Why I’m Not Freaking Out About The Apocalypse

COVID-19 and MS

If you know me at all, you’re probably assuming that COVID-19 has me camped out in a bunker somewhere in rural Ontario, wearing a Hazmat suit, and holding a shot-gun to protect my lifetime supply of Miss Vickie’s chips while I ride out the apocalypse. After all, I have MS, which puts me closer to the top of the deadly virus’ enemies list, right?

Actually, I’m at home in Toronto, still in my pyjamas. My doomsday stash includes nothing more than an extra month’s supply of catheters, and none-of-your-business bottles of wine. Technically, I’m isolated, but that’s nothing new; and anyway, it’s only for a few hours, because I’m going out for dinner with friends tonight, and before you clutch your pearls in horror at my extreme risk taking, here’s how I feel about it:

As someone living with MS, the consequences of any infection can lead to actual relapses that can cause real, and possibly permanent, damage. Add to that years of immuno-modulating medications, and I am always on high alert.

Every. Single. Day.

So, how come I’m not wigging out now?

This is my normal.

My tolerance for worst-case-scenario daymares is admittedly pretty high. Been there, done that. But in some ways I actually feel safer now, because people are finally washing their damn hands and staying home when they have a sniffle. In other ways, I feel like maybe, just maybe, people are getting a taste of what it feels like to live with the kind of anxiety that comes with a serious health threat. 

The world’s reaction

It’s interesting to see what’s possible when the health of—let’s face it— the people we value most, is threatened. In Canada, the government has eliminated the one-week waiting period for EI benefits for workers who are quarantined. Employers are figuring out how much work can actually be done from home. Concessions that were deemed impossible for people with disabilities have suddenly become options for the general population. Hmm.

Meanwhile, the public is being constantly reassured that this virus is really only taking out the elderly and those with underlying conditions. Let’s be clear: this is a not-so-subtle nod to the belief that those lives are less valuable anyway. And PS, we can hear you. 

If you find yourself struggling with the social impact that comes with self-isolating, consider the loneliness, frustration, fear, and straight-up lack of access that many people with chronic illnesses deal with on the regular.

What will we learn from COVID-19?

When the dust settles, I hope we are changed from a culture that prioritizes work and showing up above all else, to one that embraces wellness and considers the safety and well-being of everyone. If we no longer reward people for going to work when they’re sick, but support them in their recovery, everyone wins. 

Stay safe and look out for each other. These are strange and unfamiliar times. Let us be grateful for Netflix and liquor store deliveries. Amen.

We will get through this.

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Ready For A Cool Rollator? Is Rollz or byAcre better for you?

Cool rollator? What?

As a rollator fangirl hell-bent on flooding social media with proof that disability doesn’t have to mean devoid of style, I’m often asked about my, dare I say it? Cool rollators by Rollz Motion and byAcre. Both are brands I fell in love with, and now have partnerships with (scroll to the end for sick discounts); but more than that, I’m tackling this topic because there aren’t always (ever?) systems in place to help those of us with progressive MS navigate the transition from independent pedestrian to someone who could use a little support to stay upright.

Like wtf, how are we supposed to figure this out on our own? 

From canes and sticks, to trekking poles and forearm crutches, walking bikes, miniature horses, bumper cars, donkeys, dolphins, and piggy-back rides, this is not a comprehensive post about all your mobility aid options. I’m focusing on the Rollz Motion and ByAcre in response to a question I get asked all the time:

If you could only have one rollator, would you choose the Rollz or the byAcre?

I love  my Rollz and my byAcre equally because they address different needs, so this question feels like an impossible game of Would You Rather. Like, why don’t you just ask me to choose between coffee and cabernet? Miss Vickie’s and French fries? The Summer Olympics and the Winter Olympics?

Ok, that last one was a trick Q. Obviously. The answer is Netflix in my pyjamas for 3 weeks, because watching other people exercise is hella boring. 

The good news is that depending on your lifestyle and needs, your choice between the Rollz and the byAcre (or a different mobility aid altogether) might be easier. Just as everyone’s MS is different, so are the tricks and tools we need to manage our disease, and just because this is how I roll, doesn’t mean either device is right for you. 

Who needs a cool rollator anyway? 

Rollators can be great options for people with MS because they help with things like balance, endurance, and fatigue. Rollators can help you go further, faster, and safer, and using one means you always have a place to sit. A cool rollator can help you feel better about the shitty fact that you need one in the first place.

Mobility aids aren’t cheap. 

I think of my mobility aids as part of our household transportation budget. I live in a city. My hood is like Sesame Street where the butcher, the cheese monger, and every employee at the liquor store know my name, so most days I don’t need to travel far. As a non-driver, when I consider the cost of my cool rollators plus the half dozen Ubers I take throughout the week, I feel good because I realize my transit needs are actually cheaper than even the most modest car. Then I go online and order a new sweater to reward myself for being so good at money. Of course, the car-free, city-life isn’t realistic for everyone, but the high cost of living with a chronic illness like MS is a post for another day (and like, a bottle of scotch).

Rollz Motion vs byAcre: Which one is the coolest rollator?

The Rollz Motion and the byAcre rollators have a lot in common. They’re both exceptionally designed, well-made, highly functional devices that come in a variety of colours to complement your personal style.

The main difference between the Rollz Motion and the byAcre is that the Rollz converts from a rollator to a transport chair, allowing you to walk as you are able, and then to get a push when fatigue and foot-drop kick-in. 

Walk till you drop
Rest as required.

The byAcre is a straight-up cool rollator.

byAcre

The Rollz Motion

The Rollz recognizes that part-time wheelchair users exist; and to be honest, this was news to me. Whoever’s in charge of telling us about MS spends a lot of time reassuring newly diagnosed patients that “most people with MS don’t end up in a wheelchair”. This is an infuriating statement that reinforces the (false) notion that wheelchair-use signals The End, and that fails to prepare anyone with the resources to manage disease progression if it happens. Again, a post for another day, another bottle.

It would have helped a lot if someone had explained to me that many wheelchair users are actually ambulatory.

Ambulatory wheelchair user: not a unicorn

If your lifestyle includes outings where you’d like to walk, but you tire easily and your day gets cut short, you may benefit from a device that lets you get a push when you run out of steam. Every step counts, and the more you move, the better. I use my Rollz when traveling and when I’m at home in the 6ix for all-day activities like a day at the ROM, a stroll through the Distillery District, shopping on Queen West, or a trip to the new Eataly.

Cool rollator considerations:

The Rollz Motion is heavier than a standard rollator, due to the fact that it’s designed to be able to support your full weight when seated. Personally, I would find it difficult to balance and get this beast in the trunk of a car on my own. I’m never on my own when I’m using it anyway, because a transport chair is not a wheelchair. You will need someone else to use the Rollz in ‘push-me’ function.

It’s always a good idea to test out a mobility aid in real life, if possible, before purchasing. Bonus tip: If you’re in NYC, you can borrow a Rollz Motion at the Museum of Natural History while you learn about the great blue whale and the Big Bone Room. How great is that?

ByAcre 

There are more options for straight-up rollators out there than there are for convertible transport chairs. I love the byAcre because it looks so good, like, what’s missing from this pic?

NO CABLES! Let the choir sing.

This is my every-day rollator. I use it in the city to go short distances; I take it to the opera and the gym, to the coffee shop around the corner, and from the car to the bar. When the weather is too gross to handle, I use it to roam the hallways of my building to get my steps in. Its convenient shape and size mean I’ve never met an Uber whose trunk it didn’t fit. The byAcre’s carbon fibre bones make it the lightest rollator in the world. I can pick it up with one hand (and I have trouble picking up a hair dryer with one hand).

Not pictured is the detachable back strap that comes with the byAcre, because you don’t want to tip backwards when you sit on it. I admit, I don’t use mine as much as I should. Mostly because I don’t want the strap to block my outfit. Pro tip: When I need to sit, I park my rollator up against a wall, so I can’t fall.

Cool rollator consideration:

Be sure to check the height and width levels before ordering. If you’re very tall, reach out to the company to see if this device is right for you. 

Stay cool, Trippers.

It took me a long time to adjust to the mobility-aid version of myself. But if a rollator, or any mobility aid will help you keep moving and participating in the world, I urge you to lean in. The thing that I needed to feel good about this disease milestone (let’s call it what it is), was representation. Consider tagging your snaps with #babeswithmobilityaids on social media. Your confidence (even if you’re faking it) WILL help someone still struggling to adjust to this new reality. 

It is up to this community to redefine mobility aids; what it means to be young and chronically ill. Mobility aids are not limiting and sad. They are empowering tools.

If you have specific questions about either of these cool rollators, feel free to contact me. Of course, it’s always great to post questions because someone else might be pondering the same thing. And if you love your mobility aid (Rollz, byAcre, or something else), feel free to brag about it in the comments. You never know who it might help.

#babeswithmobilityaids

Go forth and rollate!

But wait!

Full disclosure: If you make a purchase through these links, I may receive a small commission at no extra cost to you.

Rollz Motion discount code

Use code TRIPPINGONAIR to receive $200 off plus a free cane chair and bag holder in the US and Canada Receive $50 off in New Zealand, Australia Receive 10% off in The Netherlands

byAcre discount code

Use code trippingonair10 to receive 10% off byAcre in Canada and the US.

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