Fitness & MS… My Complicated Relationship

In the 3 years prior to my MS diagnosis, I lost 70 pounds. I didn’t count calories. I wasn’t on any particular diet. I was single, and had decided that when I had nothing else to do (work, school, chores, or hanging with friends) that I would spend my time at the gym, doing whatever class was available or swimming. It kept me from feeling sorry for myself — especially when I was living with my grandfather right after the divorce.

When I was diagnosed in 2007, I was at my absolute healthiest. I even was in a great relationship with the guy who became my husband. I worked out at least every other day, and I was at my lowest weight since freshman year of high school, when I marched for about 3 hours a day, 4 days a week with a 30 pound bass drum. I was a mere 5 pounds away from a “healthy” BMI.

The diagnosis didn’t stop me from working out… but about a year later, seizures most certainly did. I was afraid of falling off the cardio machines. I was afraid of embarrassing myself in yoga class. I was afraid of falling down on a walk. And none of this was baseless fear. I was having hundreds of seizures a day at that point.

This lead to the only logical thing it could lead to: weight gain… and not a little bit either. I managed to gain it *all* back.

The Paleo Diet & Dances with Orthorexia

When one of my good friends found out that I was diagnosed with MS, she suggested that I start following the Paleo Diet. I laughed her off for a couple of years. It seemed like way more work than it was worth, and there was no reputable, repeatable scientific research that suggested that it would actually help me in any way.

Fast-forward to a couple of years after my seizure disorder diagnosis, and I was desperate for a way to lose weight that didn’t involve exercise. I started compiling a cookbook for myself that later became The Paleo Compendium.

My repeated attempts to adhere to the strict diet are well documented on this blog. For a short period of time in 2011, I was successful. But for the most part, it was a challenge that caused me to think about food almost all day, every day. When my therapist mentioned the word, “orthorexia,” I had never heard of it before… but I had many of the symptoms.

I worried constantly about what I was putting in my mouth. I wanted so badly to get better, and all of the propaganda that I was reading said that food was the only answer. Not medication. Not exercise. Just food. I mean, major news networks were reporting that Dr. Wahls “cured” herself with her protocol & the paleo diet. (Nevermind the fact that, in reality, she did not cure herself, but rather significantly decreased the severity of her symptoms.) If I wasn’t following that diet, I must have wanted to deal with the deterioration I was experiencing from MS, right?

I constantly worried that I was causing my MS to be worse by not being strict enough. If I “caved” and ate food at a restaurant or my in-laws’ house, I felt like a horrible person – a failure with no self-control who was causing misery to myself and anyone who cared about me. (My loving, wonderful in-laws are Polish. If there’s not bread, pierogi, or some preparation of potatoes, it’s just not a meal. Saying “no” to their hospitality always made me sad and embarrassed.)

I spent days (not just hours, but actual days at a time) adding recipes to the Compendium. I spent hours every week planning menus and making grocery lists. I started asking Adam if we could go longer between visits to his parents’ house, just so I could avoid looking my mother-in-law in the eye and telling her that I couldn’t eat whatever she’d made. I became increasingly depressed by the fact that even though I was doing everything I could do to control my eating, I was still experiencing MS symptoms. I felt guilty for craving bread, even after I acknowledged that wheat is addictive.

I was so embarrassed about having a “new” eating disorder that I didn’t even tell my husband about it… or anyone else, for that matter. It wasn’t until a friend posted about orthorexia on FB today that I felt that it was important to share my experience with others. It was only today, after several months off of the diet and 3 weeks of working with a FitBit that’s making me crazy in a whole other way, that I felt like I should come out.

The Paleo Diet is especially hard to follow for those of us with MS because of fatigue. So tired you can barely move? Tough. You can’t pick up any convenience foods. Everything you eat has to be made from scratch. Raw fruits and veggies and nitrate-free lunch meats are convenience foods to folks who are on the paleo diet.

“Eating clean” meant putting more effort into making food every day than I used to put into food prep for an entire week, not to mention the avalanche of dishes that it created every day. I would calm myself by telling myself that I was doing what I could do to keep myself as healthy as I could, despite MS. I would tell myself I was doing this for my husband, for my family, for my friends. I was hopeful that I was keeping the really bad stuff at bay.

But then, even though I was eating clean, I had an MS exacerbation where I lost feeling in my hands. It forced me to acknowledge that I cannot control my MS. Not by diet. Not by medication. MS is simply uncontrollable… but orthorexia is not. When I realized that eating paleo wasn’t stopping the MS from doing its worst, I gave it up for good. I’m pretty sure Adam and I wouldn’t have made it through that last exacerbation without Grubhub & Delivery.com.

That’s not to say that nothing good came from the experience, nor is it to say that you shouldn’t follow the paleo diet if you feel it’s right for you. There are many people who have experienced a decrease in symptoms due to its focus on anti-inflammatory foods. I know, at the very least, eating more nutrient dense food helped abate some of my fatigue.

I am happy to say that because of my time trying to follow the diet, I’ve substantially increased my intake of vegetables and still keep my grain consumption much lower than I used to. Fewer sandwiches, more salads. Fewer bagels, more smoothies. Honestly, just yesterday, I picked up a loaf of 100% whole wheat bread and felt deeply guilty…but I enjoyed the sandwich I had for lunch. Baby steps.

Working Out & Pseudoexacerbations

Regardless of diet, exercise is important for people with MS. It helps fight fatigue and depression, keeps your heart healthier, and helps regulate bowel and bladder function. Honestly, there’s no downside to exercising besides being sore the next day. The only problem is that it’s scary.

Why’s it scary? Because it can easily make you feel like crap. Uhthoff’s phenomenon causes MS symptoms to show up temporarily when your body temperature rises by even half a degree for some people… and exercise, well, it raises your body temperature. The good part of Uhthoff’s phenomenon, however, is that once your body temperature gets back to normal, the MS wonkiness stops. Because of this, I’ve decided that it’s well past time that I invest in a cooling vest.

When I looked at the scale in 2012 and saw a number that was higher than I’ve ever seen, I decided that I could no longer afford the “luxury” of being afraid of working out. Since my seizures are entirely caused by MS, this means that I have a disproportionate amount of seizures at the gym.

Fortunately, I’ve stopped worrying about what will happen if I seize while on a machine. I can tell you exactly what will happen because it’s happened so many times I can’t even keep count anymore. Adam will pull me off the machine and I will sit down until I feel better enough to walk to the car, and then I’ll try again the next day.

I’d hoped that I would be able to lose weight as quickly as I did in 2004-2007, especially since I was dieting and exercising, but that just hasn’t been the case. I started back at the gym in 2012, and here in 2014, I’ve only lost about 20 pounds — and 10 of those were in the last month alone.

Curious what changed in the last month or so? I stopped taking all medications other than my blood pressure medication and got a FitBit One.

FitBit Makes Me Crazy, But It’s Effective.

As I mentioned in a previous entry, I received a FitBit One as a part of a study on the effectiveness of activity trackers on improving MS symptoms. So, for the last 3 weeks, I’ve been logging all my foods in MyFitnessPal and all of my activities on Fitbit’s website.

Yesterday, I stepped on the scale, expecting to see no change. FitBit had told me that I was only at a deficit of 637 calories for the week. I was shocked to find that instead, I’d dropped another 4 pounds. FitBit’s calculations had to be wrong. I realized that all of the information it provides is an estimation at best. I have come to the conclusion that the simple act of food and activity journaling is enough to make me mindful to the point that I change my habits to conform as well as I possibly can with my goals. This little device has shown itself to be as helpful for my weight loss journey as meditation has been to my overall well-being.

Because I really want to get back down to the weight I was when I was diagnosed, I’m going to keep using the device even now that the study is over. Even if counting calories makes me feel crazy some days, looking in the mirror and hating what I see consistently makes me sad. At the end of the day, I’d rather be crazy and hopeful than sad and hopeless.

Then again, I fully admit this might be about controlling what I can in a life filled with things I cannot control. *shrug* As long as it gets me to a healthy BMI, and it doesn’t negatively affect my relationships with the people I love, I don’t really care.

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4 thoughts on “Fitness & MS… My Complicated Relationship

    • Absolutely. You’ve gotta do what’s right for you. If there were a diet or a product that actually cured MS, we’d all be doing it, and the NMSS would be backing it up with promotion.

  1. I had the same problem but mine was with Dr Jelinek’s Overcoming/Managing MS diet. It got to the point where I just stopped eating because I was so anxious about what to eat. It doesn’t help that all the diets are SO different — OMS = no red meat or dairy, but grains and legumes are completely fine. I hadn’t even heard of the Paleo diet for MS until I started reading your blog!
    Thanks as always for posting!! 🙂

    • “It got to the point where I just stopped eating” –> YEP. It sucks to be that afraid of “poisoning” yourself with the stuff that actually makes your motor run!!! Food is fuel. We shouldn’t be afraid of it.

      Fortunately for us all, the NMSS straight up says, “MS specialists recommend that people with MS adhere to the same low-fat, high-fiber diet that is recommended for the general population.” (http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Nutrition)

      Until I hear otherwise from the NMSS, I’m not willing to try another fad MS diet.

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