Month: October 2020

10 Easy Ways To Hack Your Diet When You Have MS

10 Easy Ways To Hack Your Diet When You Have MS

*This post is sponsored by Aby, the app for my MS. All opinions are my own.

There’s a lot of confusion about the role diet plays in MS. Currently, there’s no officially recommended MS diet (though there are many competing for your attention), but there is ongoing and encouraging research into the impact of nutrition, gut health, ketosis, and fasting on the course of MS. 

While we wait for science to do its thing, we already know there’s a role for diet in the management of MS symptoms, especially bladder and bowel dysfunction, and fatigue. We also know obesity is a risk factor for worsening progression and co-morbidities; but kale doesn’t cure MS. And diet soda doesn’t cause it.

Frozen pineapple means my brain never needs to know I’m downing two cups of spinach.

When considering any lifestyle changes in the interest of managing MS, it’s important to be aware of the damaging effects toxic targeting and wellness culture can have on people just trying to figure out how to live their best lives. In the context of so many claims that diet alone is responsible for keeping MS under control, those of us whose symptoms continue to worsen, whether we’re “clean eating” or not, can feel like failures (we’re not), or that increasing disability is somehow our fault (it’s not). Be careful of food police. The pressure from loved ones, the MS community, medical professionals—even strangers—to simply eat our way to health can result in an unhealthy amount of self-blame and frustration. Always talk to your doctor before making any dramatic changes to your diet.

Then again, I ate this cricket, so who knows if you can trust me?

I am regularly asked what I eat, and even how I stay thin (lowkey anxiety and a neurogenic bowel, tbh), when things like steroids and not enough exercise can contribute to weight gain for people with MS. Over the years, I’ve experimented with the FMD, Whole30, and other diets all in an effort to influence my MS. For the most part, I avoid dairy and sugar, gluten and legumes (I’m allergic), and processed food. Despite my efforts, I still have MS. Lots of it. But when I eat what I know is good for me, listen to my body, and get enough water and sleep, I function better. Diet won’t cure MS, but it can definitely improve how you feel. 

Consuming enough fruits, vegetables, and water is critical to maintaining bowel and bladder health, and these habits can contribute to a reduction in MS fatigue

10 easy ways to add healthy produce and h20 to your diet when you have MS

Invest in a CSA

CSA stands for Community Shared Agriculture and there are thousands of these in cities across North America. Every week, we pick up a big box of organic produce items from a local farm. Getting my 5-10 of fruit-and-veg a day is easier when I have a fridge full of seasonal produce I don’t ever have to think about; we just grab our CSA and figure out what to do with whatever’s in it when we get home. Organic produce can be expensive, but it’s much more affordable through a CSA. The food arrives without packaging, covered in dirt and smelling like the sun.

Make friends with your blender

If you follow me on Insta, you know I’m a die-hard blended-breakfast advocate. I start almost every day with a delicious smoothie, meaning that whatever else I eat that day, I will have already fueled my body with a ton of nutrition and hydration. Just about anything that doesn’t get eaten from my CSA box finds its way to my blender. I’ve learned you can sneak vegetables like zucchini or frozen cauliflower into a smoothie without changing the flavour, and add flax seeds for more fibre and Omega 3’s, and that avocado is a fantastic emulsifier. 

I could have written this entire post on how much I love smoothies. Whatever diet you’re following (vegan, OMS, Wahls, gluten-free, paleo, Whole30), smoothies can accommodate it.

Tastes like apple pie

Favourite fall smoothie

1 small apple

½ cup frozen raspberries

¼ cup frozen cranberries (great for UTI prevention)

2 tbsp steel cut oats (sub 1 tbsp almond, cashew, or pumpkin-seed butter for a grain-free alternative)

2 tbsp raisins or dates

1 cup dairy alternative (hemp milk, almond milk, soy, etc)

Pinch of cinnamon

Add soups to your weekly routine

Soups are another great way to get a couple of servings of veg in while also adding fluids. But cooking takes energy, and I don’t always have it. So, once a week, I make a big pot of soup, usually based on whatever shows up in the CSA. Decision fatigue is real, and if I have a week’s worth of soup in the fridge I never have to figure out what’s for lunch. And, just like smoothies, it’s easy to pull off a pot of soup that can follow the rules of any regime.

Consider salad for supper

Salads with a protein topper are one of my favourite dinners, and they are so easy. I love eating the seasons; adding strawberries to my salads in June and peaches in August. When I’m feeling lazy (which is usually), I just drizzle my salads with a high quality olive oil. And when I’m feeling like a grown-up I make a simple salad dressing with the fancy French dijon I picked up in Paris last year.

Perfect salad dressing: 3 parts olive oil, 1 part white wine vinegar, diced shallots, a dash of dijon.

Infuse your water

Making sure you drink enough water can feel like a chore, but water doesn’t have to be boring. I fill a carafe every morning with a bunch of pretty, floaty stuff (cucumber, strawberries, lemon–use your imagination), and make sure it’s empty by the end of the day. Keeping it on my desk is the visual reminder I need to keep drinking. And when it’s empty I feel like I’ve accomplished something.

Try sheet pan dinners

If MS leaves you with limited energy, the last thing you want to spend it on is cleaning the kitchen after dinner. Sheet pan dinners are the one-dish heroes of my meal planning, and are again dictated by whatever came in my organic box, plus whatever protein I’m feeling like (chicken, fish, pork, whatevs). Throw everything on one sheet, drizzle with a little olive oil, and bake at 400 for 20-40 minutes, depending on whether you’re having poisson, or poultry, or something in between.

Snack wisely

If you follow this blog you know how bad I love Miss Vickies’ chips. Technically, a potato is a vegetable. But, if you’ve ever made your way to the bottom of a bag and felt bloated, but still a little hungry, it’s because chips only provide empty calories. For a more satisfying snack, try fruit. A bowl of cherries or fresh watermelon, or dried fruit (apricots, dates, and figs) are all filling and nutritious, and can help to keep your bowel happy. 

When I need something salty, I use a stove-top popcorn maker (I don’t trust microwave popcorn), and instead of covering it in butter, I toss it in some garlic salt and nutritional yeast (sounds gross, tastes kinda like cheese), and it’s so satisfying.

Listen to your body

So many of us were raised to clean our plates. Our brains have gotten lazy as they realize they don’t have to figure out when we’re full–the meal is done when our plate has been licked clean. Learn to pay attention to your body’s cues. Eat slowly, chew your food. And recognize that eating when you’re full in order to minimize waste might actually mean wasting your health.

Aby app

Managing MS is so much more than taking medicine and getting MRIs. Diet is one part of how I take care of my MS; a compliment to the many other strategies  I use to keep this beast at bay. Aby app has lots of features including nutritional information and healthy recipe ideas; plus, you can track your symptoms and do your own analysis of how your MS changes or improves with diet modifications. You can even generate reports to share with your doctor. Download the app here to access this one-stop-shop for managing your MS. 

MS can steal joy, and so much of food is not just about keeping us alive; it’s social, and celebratory; it’s nourishment for the body and the spirit. I’ve shared all my healthy habits; but, the reality is, I try to find the balance that works for me, and that balance includes chocolate, a regular cocktail—and if I’m being really real—sometimes chips.

My all-time favourite meal

I’ve learned that I can influence my MS, but I can’t control it. It doesn’t mean I’m not trying hard enough, or that I’ve failed. MS is a complicated condition with no simple solution. Food lets me feel like I have the opportunity to do something good for my body, good for my MS every time I eat. Trying to honour that is a daily commitment.

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That Feeling When You Get Bad News About Your MRI

An antique style phone made of peach marble with gold details. It's so pretty you'd think it would make hearing about new lesions on your MRI easier to accept.
new lesion, who dis?

Disclaimer: I will be fine. I just need to be dramatic about it first. 

That Feeling When You Get Bad News About Your MRI

This morning my neurologist called with the results of my recent MRI to drop this bombshell: “There is a large new intramedullary lesion within the left lateral medulla.”

Okay, fine. Nobody talks like that. 

What she actually said was that I have a new lesion on the part of my brain that affects speech and swallowing. The quote above is from my MRI report. Add intramedullary to the list of words I wish I didn’t know. (I was not good at biology, obvi.) 

Over the past few months I’ve had the alarming experience of losing my voice, struggling to speak, and occasionally gagging on water. I suspected this was MS, but for some reason (fucking brain damage or good old denial?), I didn’t actually realize I was having an attack. I’ve been in the MS game for 19 years now, but it’s been a minute since I’ve had a real relapse. My shiny new intramedullary lesion (am I saying that right?) was scientific confirmation that the beast is waking up, and the news landed like a gut-punch. 

Instead of taking this in stride, I burst into tears, like a rookie. New lesions aren’t supposed to happen to me. I had Lemtrada! What gives? Am I letting the stress of Covid get to me? Am I eating too much Miss Vickies? Not getting enough sleep? Drinking too much? Hanging out with the wrong crowd? I swear to God I’m flossing. Wait. Is this because of all the swearing?

WHY WHY WHY

My tears this morning weren’t just tears of grief or frustration. My tears today were white hot tears of rage. In the years between my last Lemtrada infusion (2016) and now, I had been dismissed as having unmodifiable disease with no option for treatment despite worsening symptoms. Go home and hope for the best, but like, plan for the worst, cause this shit isn’t getting any better. I was effectively getting dumped by my doc.

Thank you, next.

I will not be Pete Davidsoned. And I will not throw my hands up in defeat. It was not easy or fast, but I finally found a new neuro who was not willing to give up on me and who believes Ocrevus is my best option. But months of insurance delays and Covid-caution postponed my access to treatment even longer. Knowing that if only I had been on this drug six months earlier I might have never needed to think about my medulla and how it might try to take my voice and choke me out is a frustration that is difficult to articulate. Like, I really need to speak to a manager. I demand a refund and a lifetime supply of whatever it is you sell, because:

THIS DIDN’T HAVE TO HAPPEN.

Work will begin with a speech pathologist to protect and rehabilitate my speaking voice. I will spend my precious energy learning things like safe swallowing techniques and I don’t even know what the fuck else. It’s hard to feel like you’re enriching your life when you have to spend so much of it just trying to catch up; chasing the simple abilities you once took for granted. 

All this to say, be a squeaky wheel. MS is not like many other diseases that have obvious consensus-based treatment plans. No two cases are alike, and doctors have vastly different opinions on how to treat the disease, despite the fact that research tells us early and effective intervention is key. If only I’d had treatment x a little earlier is a heart-breaking path I’ve been on all too often. If you feel like your doctor is willing to gamble with your future, find a new doctor. It’s not good enough to react to MS. We must prevent attacks from happening at all. 

As I process what’s happening to my voice, I will leave you with this self-indulgent eulogy to a past life. A song from an obscure musical from my youth, that I recorded a few years ago, and who’s lyrics I feel are especially poignant now.  This is about as vulnerable as it gets.

Am I Only Dreaming from the musical Earth Angels. Music and lyrics by Andrew Svoboda.

End rant. Thanks for listening, Trippers.

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