A lot has been written about heat intolerance and MS, and yeah, put me in a hot bath and I’m al dente in 6 minutes or less. But somehow, even in that bath, my feet manage to maintain a corpse-like grey and still feel cold. If you have MS, the heat might mess you up, but feeling cold can be its own kind of torture.
It’s called Dysesthesia.Like a twisted game of Telephone, it happens when damaged nerves send inappropriate messages to the brain. It can feel like pins and needles, an electric shock, cold, or burning pain.
Just like everyone’s MS is different, so is everyone’s MS-related Dysesthesia. For me, it means that regardless of room temperature or time of year, whenever my nerves decide to drunk-dial my brain to talk about their feelings, my brain (who doesn’t speak Vodka), decides I’m cold. And not a cute, ooh, I’m a little chilly, let’s get cozy kind of cold. Screw you. It’s a bone-deep, painful, unholy Arctic chill, that ironically feels more like being on fire than anything a sweater could solve.
There’s nothing cute about this look.
Or this one.
My attempts to cope with this constant confusion include fully-clothed visits to the sauna in my building, regularly blow-drying my body, and buying coffee just to hold the cup. I use the car seat-warmer in the summer, wear down-filled, outdoor camping booties in the house, and my most recent Make-A-Wish is to have all the hardwood ripped out and replaced with heated floors, because my feet, by far, bear the worst of it. My toes look so disturbingly undead that whenever I get a pedicure, the aesthetician tries to scrub off the remnants of what she assumes must have been blue polish.
Someone at the MAC counter asked if my nose is red because I drink. Rude. My mom knit me this itchy AF beak blanket because my nose is THAT cold.
All of these strategies are bullshit, of course. I’m still Jack Nicholson at the end of The Shining cold. While there are medications that can help treat these sensory mind-fucks, I haven’t found any that work for me. But talk to your doctor, because everyone’s MS is different, and as every fangirl knows, winter is coming.
Don’t let anything come between you and your garbage fire.
The good news is, while it might feel like my flesh is dying, there’s no actual tissue damage occurring. The bad news is, this kind of pain is hard to understand and can make you feel like your own brain is trying to gaslight you. Don’t expect much validation from medical professionals either. MS doctors know you have bigger things to worry about, like being able to walk, and see – I once had a neurologist tell me that eventually menopause would take care of this symptom – he thought he was hilarious, and sure, he did look like a muppet; but sometimes it’s the sensory that can have the biggest impact on day to day quality of life.
Dysesthesia is no joke, Dr. F.
I was born in Montreal and live in Toronto. That’s Canada, bitches. The capital of winter. But just because winter is in my DNA doesn’t mean I have to love it. I don’t. I hate winter. Hate is a strong word, and Jack Frost can go to hell (but like, save me a seat, cause it’s warm there). It’s not just the cold. Negotiating a rollator on unploughed sidewalks sucks. Bladder urgency is not conducive to 30 layers of clothing. Chapped lips, insufficient sunlight, salt stains, and static cling all leave me asking myself Why the fuck do I live here?
diversity, healthcare, opportunity, freedom, food culture, regular culture, brunch culture, friends and family, maple syrup, tolerance, Tim Hortons…
Oh right. #sorry
I can’t love winter, but I can try to hate it less. In my next life I’m coming back as the surface of the sun, or Fat Elvis, but until then, I want to learn how to embrace the season without freezing my actual tongue to a pole. I’m trying to adjust my attitude by focusing on appreciating the positive things you can only really do in winter. With that in mind,
8 ways to make winter suck less with MS:
Strawberry shortcake and sangria are over; let it go. And while no reasonable person looks forward to brussels sprouts, beets, cabbage, or any of the gross things that grow in tundra, it doesn’t mean you can’t eat your way through winter. Comfort food is the solution, and if you can get someone else to make it, even better. I’m talking shortbread cookies, beef stew, mashed potatoes, mac and cheese, grilled cheese, cheese fondue, basically anything with melted cheese.
Drink through it
Two words: Seasonal Lattes. Call me basic, but there’s something seriously soothing about a candy-cane cup of caffeinated warm milk. And only in winter can liquid chocolate be considered a legitimate breakfast food. Adding Irish cream, Kahlua, or Peppermint Schnapps to your afternoon coffee seems like substance abuse in the summer, but when it’s dark out at 4:30? Fair game.
Let yourself go
Don’t even worry about what all this extra eating and drinking is doing to you. Nobody can tell what’s going on under that snow-suit, and did I mention it’s dark? Now’s the time to embrace winter weight, stop shaving your legs, or giving a fuck; that’s spring’s problem. You don’t have to wear pants with a waistband anymore. If you do have to leave the house, wrap yourself in a blanket scarf, and suddenly you don’t look derelict, you look European. See you in April, bra.
Make like the Danes #hyggelife
Despite living in a damp, sunless country, the Danes have been shoving their happiness down our throats since happiness lists were invented. From the land of Lego, stylish mobility aids, and dogs that look like tiny horses, comes Hygge; the hug you can give yourself. If you don’t know about this culture of candles and coziness, I don’t even know who you’re following on Insta; but if you’re like me and you love a trend, a quick fix, and the North-American commercialization of a pure, simple tradition, Hygge is for you!
Denmark: We’re better than you.
Make your friends come to you
The best thing about condo life is never having to shovel snow or take out the garbage. The second best thing is having neighbours that become good friends. My building buddies and I can come and go between our apartments in our pyjamas. It’s like living in a dorm but without the academic consequences of weeknight wine-drinking, and nobody has a Che Guevera poster on the wall. Between board game night, movie night, and Ubereats, I literally never have to go outside. (Wait, don’t you have a dog? Yeah, that’s The Banker’s problem.)
But actually, exercise
Before cabin fever turns you into a murderous recluse, realize that exercise is not only essential for your physical health, it can also have a powerful effect on mood. If you’re one of those people who actually enjoys cold exercise winter sports, congratulations, you’re better than me. For everyone else, figure out a way to move.The MS Gym has free online tutorials with workouts every MS’er can do at home at every level of mobility.
Seasonal affective disorder (SAD) is a real thing that can exacerbate depression, making winter particularly difficult, and those of us with MS are at a higher risk. Meditation, those fancy light lamps, cognitive-behavioural therapy (CBT), and certain medications can help. If you’re more than a whiny, winter-hater like me, and feel legit depressed, don’t suffer; talk to your doctor.
Consider that not all squash is gross
If you’re still reading this terrible advice, I feel compelled to provide you with a recipe that’s a little more in-line with a healthy MS lifestyle than the suggestion you stay in bed with an electric blanket, a bag of Miss Vickie’s chips, and all 7 seasons of Gilmore Girls. Seriously. Don’t stop your Wahls, your OMS, your Swank, or whatever MS wellness plan you’re following just because some rando on the internet tries to rationalize day-drinking your way through winter.
This butternut squash and Italian sausage soup is gluten-free, and dairy-free. And not on purpose either! Take out the sausage and voilà, it’s vegan! It doesn’t taste as good as summer feels, but it’s pretty darn close.
Roast a butternut squash.
In a soup pot, sauté some Italian sausage out of its casing, then add onions, carrots, celery, garlic, whatevs. Maybe a smidge of apple cider vinegar if you feel like deglazing, but does anyone actually do that?
Add roasted squash, a handful of fresh sage, several cups of stock, and a glug of maple syrup (obvi the real stuff, I hate winter, I don’t hate Canada). Bring to a boil, then simmer until you feel like it.