12.23.2018

My Worst MS Day. Ever. So Far.



Last Monday was my worst MS day. Ever.

I haven’t had a lot of ‘disease activity’ over the last year. Don’t get me wrong, Multiple Sclerosis affects me every day; but that’s old news, the stuff I’m used to. After coping with, and recovering from, a sudden decline in my mobility last Christmas, I spent most of 2018 feeling grateful for all the steps I’m still able to take, and proud of how I’ve been able to focus on what I can do, without obsessing over scary hypotheticals. 

It’s possible I’ve been a little too hasty in giving myself props. After all, I’ve had Multiple Sclerosis for a thousand years already; I should know a thing or two about living with chronic illness. MS is always going to be hard, but it’s relatively easy to keep your shit together when things are stable.

Of course, this is MS, and stable only lasts so long.

And so it was that last Saturday I woke up in New York City, in town for a Very Important Bestie’s Very Important Birthday, feeling only slightly rougher than usual. I blamed my heavy vocal cords on dry airplane air, a late night, and my attempts to channel Eminem at a karaoke dive-bar the night before. I didn’t have time to give my fatigue too much thought. I was in the Big Apple at Christmas-time and festivities were afoot. 

As the day wore on, it became harder to ignore the congestion that was building in my chest, but ignore it I did. There was no way I was going to be sick during a weekend in one of my favourite cities, to see one of my favourite people, at one of my favourite times of year. I threw on a red lip, shoved a wad of kleenex up my sleeve, and made the sign of the cross, before heading to my VIB’s VIB dinner at a legendary New York steakhouse.

What's her secret? That wristlet is full of caths and there are 18 tissues up my sleeve.

We arrived at the restaurant, ready for good times. There were three or four steps into the dining room, because big cities haven’t gotten the accessibility memo yet. This was annoying, but manageable. As The Banker tucked Optimus Prime, my convertible rollator into a corner, a friendly waiter helped me negotiate the stairs down to the table where our friends were waiting.

We had an amazing meal, my last pleasant memory of the weekend that would be cut short. By the time dinner was over, I knew with a sinking feeling that I was, for sure, coming down with something. What I didn’t know was just how badly whatever bug I was battling was about to start poking the MS that had been relatively quiet this past year, with a stick.  

Enter the pseudo-relapse. 

Unlike a true MS exacerbation that happens when there are new lesions on the brain or spinal cord, pseudo-relapses can be caused by things like infections, increases in body temperature, exercise, stress, lack of sleep, a butterfly flapping its wings. A pseudo-relapse wakes up old symptoms that may have resolved, or makes existing symptoms worse. And in my particular case, on this particular week-end, much fucking worse.

When it came time to leave the restaurant, those same stairs I’d negotiated with a cane and the arm of an anonymous man were suddenly impossible. In the span of a few hours I’d gone from prancing around Manhattan, shopping and posing for pics, to being carried up three stairs in a wheelchair by two burly men. Okay, one was a waiter, and the other The Banker. Neither were particularly burly.  

Though it was cold and drizzly and the hotel was 30 minutes away, I didn’t want to take a cab because I didn’t think I could physically get out of my chair to get into a car. So we walked. I mean, The Banker walked. And pushed. I sat, wrapped in the blanket I’d taken from the hotel, feeling defeated and small after the whole restaurant hoist, ready to sleep it off and start fresh the next day. 

But there was nothing fresh about the next day. 

As I lay in bed, flat on my back, my anxiety turned to dread when I realized I couldn’t sit up, turn over, or bend my legs. At all. I woke The Banker who pulled me into a seated position. As soon as he let go, I went crashing back down; both of us shocked to learn I couldn’t hold myself up. 

I knew I was running a fever, and figured I was getting the flu. I know what that can do to MS. But just because the pseudo-relapse isn’t a real relapse, doesn’t mean it can’t do real damage. Here's something I just happened to have read on Bart's MS a few days before my deep dive into a new level of disability.

“Every time you get an infection it causes your immune system to produce cytokines, or inflammatory messengers, that travel to the brain and boost(s) the activity of the microglia. The hot microglia then exacerbate the damage that MS is doing to your brain and spinal cord. This is why many of you tolerate infections so poorly and often don’t recover back to baseline after a severe infection.”

I’m not exactly a science girl, but it sounds to me like cytokines are Satan’s envoy, sent to provoke the hot microglia into a bar-fight in my brain. None of this is good. The possibility of not recovering back to baseline is what makes colds and flus such a freaking nightmare for people with MS. Like a real life visit from a very dark Dickensian ghost, for a few days this Christmas, I had a glimpse into a possible future where I am less independent (the gentlest way to put it). This past week-end, I got to try on what it feels like to have to ask for help. 


For Every. Single. Thing. 

I got to experience the uncomfortable dynamic of being dependent on my partner, of apologizing for things that are beyond my control, but I nonetheless feel responsible for. I felt the demoralization that comes with the constant please and thank you’s for things I never wanted to need.  


And I hated it.

Until this past week-end, I’d spent the past year feeling pretty kick-ass and mentally strong. I haven’t been wigging out over future disability day-mares. And now I suddenly find myself jolted back into consideration of a future that once again doesn’t feel so improbable. It’s a future that feels like it’s one step away instead of ten. And it’s just too hard to imagine. 

So I won’t imagine it. Or I’ll stop imagining it. Now that I’ve given voice to my fears, I must put them back in a box and light them on fire. As my flu symptoms began to resolve, my strength and independence blessedly began to return. I’m still recovering, and fingers crossed, I will get back to baseline. 

Today at least, I am okay. And that has to be enough. 













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12.04.2018

12 Of The Most Unique Gifts People With MS Want


It’s the gift giving season and if you have a chronic illness like Multiple Sclerosis, you deserve presents most of all, because stuff can’t cure MS, but it sure can make it suck less. 

The unconventional gifts people with chronic illness actually want.

Gift-giving when MS is involved can be challenging. What to get the person who has everything a debilitating brain disease? One year, The Banker temporarily lost his mind and gave me an enormous, Barney-coloured heated blanket, and I cried all the way to Christmas dinner. My love language is jewel-toned, but on like actual jewels. I hated that blanket so bad, and not just because it looked like a deflated cartoon dinosaur – I hated it because it was a sick-person present.

Wow, you’re a spoiled sucky baby. A heated blanket is a pretty thoughtful gift for someone who’s cold all the time. 

You’re not wrong. But just because I have MS doesn’t mean I’m not vain and superficial, preferring romantic gifts over practical ones. If the Barney blanket had come from anyone other than The Banker, I would have hated it less. 

I mean, probably. I really can’t stress just how purple it was. 

I know The Banker’s intention was to warm me up, but his choice of present didn't feel like I was the sexy wife he wanted to drown in perfume and drape in diamonds; it felt like I was the shivering consumptive he wanted to cover with a polyester tarp.

Obviously I need therapy, and maybe you do too. But therapy is expensive, and this gift guide is free. You won’t find crossword puzzles, mugs filled with hard candies, festive epsom salts, or any other geriatric gifts here. Christmas is a time for reckless indulgence; a time for drinking too much champagne, and putting pickles in trees; it is not a time for gifts that remind me I’m aging in dog years. 

Here are my top picks of the best, Tripper-approved gifts you didn’t even know you needed Santa to bring you this year. 


1. Clean Hair

Showering is hard, and the last thing I ever wanna do after risking my life in that slippery, upright, future-coffin is lift a blow-dryer to my head. Whether you have heat sensitivity, balance problems, muscle weakness, fatigue, or any and all of the above, showering requires scheduling and recovery time. Having someone else wash and dry my hair is a weekly luxury that feels like an energy-freeing life-changer.

Gift: Blow-dry package from a local salon. 


2. Buy Me A Drink

Every basic bitch’s chronic illness gift guide is gonna have tea on it. But do not come at me with a tired old box from the Hasty Market. I want fancy tea that comes with a tin and stern instructions not to over-steep it. This green tea is a major splurge, which makes it the perfect gift, because it’s the kind of thing you might not buy for yourself. Also, it comes from the tears of real dragons, or your money back (I assume). 

Gift: Jasmine Dragon Tears Tea, Gourmet Hot Chocolate, seven dollar lattes.


Good enough to bust out the wedding china.


3. Decision-Free Days

Do you ever feel like you will literally die one hour before dinner because you have no idea what to make and making that decision will end you, so you just stare at your phone for 157 minutes hoping Siri can figure it out, but she’s actually a useless cow, so you end up eating two saltines and an unwrapped Lifesaver you found at the bottom of your purse, before going to bed in your clothes? 

There is science to back up the theory that we have a limited amount of decisions in us per day, and that number is, for sure, lower if you have MS. 

Subscription services are all the rage because they save time and energy. You only have to choose how you want to stock your fridge or freezer once a month instead of every damn day. 

Gift: Food Box. My local favourites are Plan B Organic Farm and Butcher Box.

Festive bells will distract your best frenemy from the fact that you just gave them cabbage and called it a present.


4. Take-Out

Last night, The Banker told me how much he loved the turkey stroganoff I’d made for dinner. And I said, do you like it more than you like having sex? He didn’t feel safe answering, but the point is, if I’m making dinner I’m not making anything else. Dinner comes at a hard time of day, and no matter how much I’ve paced myself, I’ve already drained my battery. 

Gift: Gift cards to delivery services like Skip The Dishes or Foodora will free up your evening for more interesting pursuits. 

I'm all toasty inside.


5. Can I Get A Ride Share?

Whether MS has messed with your ability to drive, you’re sick of being the DD, or your outfit is too fancy for the bus to handle, having access to transportation provides major liberation. In cities like Toronto you can even get a wheelchair accessible Uber (WAV), or Uber Assist which offers independently trained drivers to help seniors or persons with disabilities.  

Gift: Ride service gift card.


6. Books You Don't Have To Read

Vision loss is a real thing for many with MS, and if you’re struggling to see, e-readers are great for letting you choose a font that most people could see from space. If holding a device and moving your eyes is still too much, Audible is a great way to get learned and kill all those hours in the infusion room without the risk of paper cuts. Isn’t it great to live in the future?

Gift: E-reader, Audible subscription.


Nobody needs to know you're reading about the sisterhood. Again.


7. Clean Base Boards

MS fatigue can interfere with your ability to stay on top of your laundry and your lunch prep, and even if you’re able to do some tidying and light housework, for many with MS, the deep clean is too daunting to ever truly get done. If you’ve only got energy for one thing a day, it shouldn’t have to be scrubbing the toilet.  

Gift: Gift certificate for housekeeping/cleaning service.


8. If You Can't Hide It, Decorate It

Chances are you need a briefcase to hold all your MS meds and supplements, but you also need a smaller vessel to shlep around whatever meds you might need to get you through the day. Opening your clutch or man-bag and pulling out an orange plastic bottle just feels so…medical. 

Gift: A pretty pill-case is a gift you can find at any price point. I’m currently coveting this one I found on Etsy. 


Hold up. I’m a dude. This is starting to feel like a chick’s list.


9. Regularity

If you’re a dude and you’re still reading this, and wondering what the heck Santa is supposed to bring you, remember that housework is also your responsibility. But if that’s not enough to get you excited, the Squatty Potty® will. I know what you’re thinking, this feels 100% like a sick person present. But that’s where you’re wrong, because according to my niece Abigail, Everybody Poops. It just might take a little more creativity when you’ve got MS. 

Gift: Squatty Potty.

It's a stool for your stool!

10. Hang Out

Technically, spending time with me doesn’t count as a gift, so make sure you bring lunch or a bottle of wine, maybe bake some cookies. Better still, take me Christmas shopping and offer to carry my shit, and rest at every bench. Or offer to push me in one of the wheelchairs you can borrow from the mall. 

Gift: You being cool, and me not having to ask for awkward things.


11. Walk The Dog

If you’re looking for creative ways to say Happy Festivus, a commitment to walking the dog on the snowiest of snow days, or to scooping the cat litter on any day – because gross – is an energy saving gift that has the added bonus of providing you and yours with an extra chance to see each other during the week.  

Gift: Pet Care.  

Who wouldn't want to hang with this bitch?

12. Cure It

The best gift anyone with MS could ever receive would be to not have MS, obvi. Despite the tremendous developments in MS treatments, we must not get the impression that MS is under control. It's not.  

Gift: Make a donation to an organization that supports persons with MS, or that funds MS research. I like what they’re doing at Tisch.


Having Multiple Sclerosis means managing a constant personal energy crisis. All the time, I hear from loved ones who wish they could help. While you can’t fix MS (and black market prednisone is not a sustainable option), there are ways you can help extend the battery life of someone with a chronic illness, freeing up precious resources to spend on the things that really matter, like watching cat videos on Youtube, Google Earthing your boss's house, or reading ridiculous blogs.  

Happy Holidays, Trippers. I hope Santa is good to you. 














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