Covid-19 and MS

Anxiety, Tears, Tequila: Welcome To Quarantine Fatigue

I’m coming for you COVID.

Remember when I bragged about not freaking out about the apocalypse because having had MS for 19 years has trained me to roll with life’s uncertainty? Well, that was 59 days ago. I was 70 years younger then. My bluff has been called and quarantine fatigue has announced itself with a teary, boozy meltdown. 

Out of an abundance of caution – I know what a cold or flu can do to my MS; I am NOT getting COVID – I hadn’t left my apartment in 56 days. For the most part, it’s been fine. Well, manageable. I like my apartment. I like my husband. I’m grateful for the things we’re supposed to be grateful for; food, shelter, track-pants. I’ve put my head down and focused on doing what needs to be done to keep myself and others safe. 

What I’m beginning to understand is that safe basically means alive. It doesn’t necessarily mean healthy. While I’ve successfully (so far) guarded myself against COVID, my overall physical well-being has taken a hit, and as for my emotional health, well, let’s just say I’m starting to come a bit undone. 

The physical cost of quarantine for me has been lack of physio, sunlight, sleep, and exercise. I’m not getting the infusions I’ve been prescribed to help calm down my MS. Happy hour is happening earlier and more frequently, and I don’t know what the hell happened to my Whole 30/FMD diet, but I am aware that in the absence of the normal things that bring us joy and pleasure, filling that void with baked goods and Miss Vickie’s is an easy fix. I’ve lost many things because of the lockdown, but what I’ve gained is a steady 3-5 pounds.

The emotional cost of quarantine is harder to measure. I should be in DC right about now, with a fresh mani and a new dress, to speak at the MS Society’s On The Move event. Instead, I’m wearing an 8 year-old t-shirt with a hole in the armpit, staring at the fingerprints I’ve left on the wall, waiting for the next Zoom party to give me an excuse to brush my hair.

You didn’t really think I was gonna show you that ratty T-shirt, did you?

On Friday, The Banker announced he’s been mandated to continue banking from home until the end of July. And I was like, duh. No surprise here. But the reality is sinking in as I started to do the math. We’ve been doing this for almost 8 long weeks. The end of July is 11 weeks away. We’re not even at the half-way point. And I am starting to lose my chill. 

I’m trying to be brave and resilient and thankful, but quarantine fatigue is real. I know there are many struggling more than I am, but that doesn’t make me feel better. It only makes me feel like a spoiled selfish twat for complaining. After waking up Saturday and feeling that Oh right, it’s Groundhog Day, please don’t make me go to the living room again pit in my stomach, I grudgingly decided to face the day. Even though it fucking snowed—in the middle of May—I managed to ignore my feelings of anger and frustration and sadness. Or so I thought. When evening came and The Banker noticed I was moving with a little more of a Frankensteinian vibe than normal, he offered to help me with some stretching. 

I don’t know why this loving gesture is what triggered the tears that lead to the tequila, and a decision to get me out of this apartment the next day. Maybe it’s that I don’t want my husband/coworker/roommate/housekeeper to also now be my physiotherapist. Maybe it’s that I’m tired, and need a decent night’s sleep. Maybe it’s that feelings don’t go away, and the only way out of them is through them. 

I MISS BRUNCH SO BAD

Even before my health was a factor, I’ve always been the kind of person who wants to get the most out of life (check my Insta for the receipts). My MS diagnosis jacked-up my seize-the-day MO. MS has cost me so many things, I live by the mantra: If not now, never. Because, as hard as it is to write this, the realist in me knows, with a gut-wrenching certainty, that my strongest days are behind me; that my MS gets worse. That doesn’t mean I don’t realize there are lots of things I’ll figure out how to do as MS progresses and continues to slow me down; only that I endeavour to do as much as possible on these two legs while I still can. 

There are two Stay Home narratives cruising around the interwebs right now. There’s the bossy directive to shower every day and pour yourself into new hobbies; learn a language, start a garden, write a novel, whatevs. That was the first thing we were told to do. The second narrative is the backlash that recognizes we are all in shock and grief. It’s the narrative of self-care that tells us to free ourselves of the pressure to do or be anything right now; to allow ourselves to grieve and eat banana bread and just exist. 

I get it. I see both sides. COVID happened so fast. It was a stunning reminder that anything – ANYTHING – is possible, and that nothing is guaranteed. I feel punched in the throat with the warning of how little time any of us has, and I don’t want to just pass the time. Even if it’s a really shitty time. 

Because how can I rationalize wishing away time when this is the time that I am still walking? Still able to speak? It’s hard not to feel like I’m using up all my last, best days of semi-functional legs in this tiny apartment, waiting to start living again. 

If my philosophy of carpe-ing the fuck out of every god-damn diem holds up, how do I make this time count? Even as things start to open up, COVID isn’t close to being over. How do we make sure we’re still living and not just existing?

This. Is. Hard. 

I miss my life! Is what I want to say, but this is still my life. Somehow, I have to normalize this.  

And so, yesterday, I finally left the apartment. After 56 days of looking at these four walls, I put on my military-grade face mask and braved the elevator to the underground. The Banker took me for a drive to remind me of what the outside world looks like. We parked on a quiet street where I could walk for the 15 minutes my legs would carry me – about 13 consecutive minutes more than they’ve carried me in the past 56 days. I was stiff. The walk was difficult and disheartening, and…good. I went out, and I will go out again. I will keep living. 

Follow Tripping On Air on Instagram and Facebook.

How To Manage Fear Of Worst-Case Scenarios

Fear is a waste of my imagination.

So far the Covid-19 crisis has changed my life in manageable, if uncomfortable ways. The things I’m grieving that in another life might have felt like worst-case scenarios for a world-traveling, party-girl just trying to make the most out of life with MS, seem trivial and first world. Dinners out, some trips, some work, some time with friends, some time alone. The first arms I will run to when this is over will be Jazmin’s, my hair stylist. No offense, Mom. 

My MS is being impacted in ways that will only be measurable when this is long over. I’m missing physio and massage therapy, the DMD I was supposed to start is being delayed, putting some much needed health-hope on hold, and my attempts at fasting look like—well—the exact opposite of fasting.

I already work from home most of the time; and if I’m being real, I was always more of an indoor girl anyway. (Check my complexion for the receipts.) But, The Banker is banking from home now, too, which means I’m scheduling my morning smoothie-making around his Zoom calls and reminding myself that this is ‘our’ apartment, not ‘my’ apartment.

Love the one you’re with, ’cause the alternative is murder/suicide.

For now, I feel like I’ve adjusted to big changes and everything is under control. But if having MS has taught me anything (it’s taught me lots of things), it’s that there’s no such thing as control, change is inevitable, and chaos is normal. 

Uncertainty is something we’ve all dealt with at various points in our lives. But we are not conditioned to embrace the purgatory of not knowing. Uncertainty drives our brains to make sense of what’s going on; and for many of us, a lot of worst-case scenarios are being cooked up as we try to fill in the blanks about what comes next. 

Which isn’t to say we aren’t facing some actual worst-case scenarios right now. 

The majority of my own experience of uncertainty and catastrophic daymares comes from having lived my whole adult life with MS; a disease that can, and has, stopped me in my tracks with things like periods of sudden blindness and degrees of paralysis. Lately, waking up and turning on the news to see what the hell today’s gonna be like, is reminiscent of waking up with MS and scanning my body, checking in to see if I’m going to be able to walk, or move my arms, or see.

Sometimes—not always—but sometimes, my worst-case scenarios have come true. Sometimes, the worst thing I could have imagined at the time, came to pass. Disability stuff for sure, but also personal disasters like breakups, and job losses, and deaths of loved ones. Shit I told myself I’d never be able to overcome. But I did.

I have already survived all of my own personal worst-case scenarios.  

And, I’m willing to bet my doomsday stash of Crémant and Miss Vickie’s that regardless of whether you have MS or not, you’ve survived more than one worst-case scenario of your own.

Every time I start to spiral about what MS is going to throw at me next, I think of the really hard stuff I’ve already adapted to: the lifestyle changes I was convinced I couldn’t handle, but did. Knowing that I slayed those personal disease-dragons is usually enough to convince me that I will be able to do it again, and again. And even when I can’t fully commit to believing in a manageable outcome, I can at least acknowledge the possibility of one, and sometimes, that has to be enough.

If you’re alive today, survival is in your DNA. Humans have been overcoming unbelievable adversity since forever. We can adapt to extraordinary circumstances. If you have MS, you already know this more than most. 

You don’t have to pretend that any of this doesn’t suck. In fact, I’ll say it for you: This straight-up fucking sucks. But, as you wait for things to get better, knowing that they may also get worse, trust in your resilience and ability to adapt. 

You can do hard things. You’ve done them before. 

Follow Tripping On Air on Facebook.

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.

Follow Tripping On Air on Facebook

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.

Follow Tripping On Air on Facebook.

Loading cart ⌛️ ...