MS & Finding Normal: A Year in Reflection

by Janna Marlies Maron on November 15, 2013

2849304777_1f4df8e018A year ago I thought I had to recalibrate my normal. My new normal would be fatigue, diet restrictions and isolation. My new normal would be MS and MRIs. My new normal would be monitoring symptoms and supplements.

A year ago I started the Damn Diet.

A year ago, when I had a bunch of lab work done and we were waiting for the results, I hoped and prayed that I wouldn’t have a yeast overgrowth problem so that the Damn Diet wouldn’t even been on the table. I didn’t want to have to give up food I love, but more than that I didn’t want to feel isolated.

A year ago, when the Damn Diet was first prescribed by my naturopathic doctor, I thought there would be no way that I could ever do it for one month, let alone one year.

A year ago I sometimes went to bed at 4 p.m. and slept through the night. There’s tired and there’s low energy and then there’s fatigue. Before the level of fatigue I experienced last year, I used to use the word to mean “over tired.” But that’s really just exhaustion. As in, you didn’t sleep well and so you are exhausted the next day. Or your work day didn’t end at 5:00 as usual, and you put in an extra 3 or 4 hours so you are exhausted when you get home.

But fatigue is something entirely different. It’s one of the most common symptoms of MS, and of autoimmune disease in general, and to understand what its like, imagine that exhaustion from a bad night of sleep or a long day of work. Then imagine that to recover from that exhaustion you went to bed early and got in 10 hours of sleep, a whole 2-3 hours more than your usual 7-8. Then imagine that the next day it feels like, instead of 10 hours of sleep, you still need to sleep for another 10 hours.

A year ago there were days I slept for 12 or more hours.

When fatigue is that bad, you can’t concentrate. And you can’t concentrate because you have to focus every amount of attention you can muster on doing things like moving your feet to walk, because you might as well have put on bricks instead of shoes.

True fatigue is like a perpetual hangover, minus the fun that usually precedes it.

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A year ago I suffered from mild numbness in my limbs. Not long after my diagnosis, my lower left leg went numb. I remember the sensation distinctly. Jeremy and I went to a friend’s house for dinner and we rode the Vespa. It was a late summer night and a little chilly on the ride home. I wore white cotton pants, not the warmest thing, and my left knee cap felt especially cold. I thought it was from the coolness of the pants rubbing against my knee. But when we got home and I changed for bed, that spot on my knee still felt funny. I touched it. The knee couldn’t feel the fingers. It was a small area, so I assumed it was a little numb from the cold and that it would go away over night. But it didn’t go away over night. The next morning my entire leg from the knee down was numb.

This happened before I started seeing a naturopathic doctor and so after a week of numbness I called my neurologist. He was on vacation. So I called Kaiser’s emergency line and spoke to the on-call nurse. She took down my name and phone number and said that she would have a neurologist call me back. When the neurologist called back he asked me how long this had been happening. Seven days, I said. Are you having any other symptoms, he asked. No, I said. But I was just diagnosed with MS a few weeks ago, I said. But if you aren’t having any other symptoms and you haven’t had any other episodes, there is no way to know if this is connected to your MS, he said. So what am I supposed to do, I said. Just wait to see if it goes away, he said. What if it gets worse, I said. If it gets worse, we will asses it then, he said.

After that I saw a naturopathic doctor for the first time. He told me the numbness could be a result of poor circulation. The diet should help, he said. It took 8 weeks for the numbness to completely go away, and I still experienced intense moments of my hands and legs falling asleep during yoga poses and even in the middle of the night, waking me from sleep. “Pins and needles” is the more technical MS term. My naturopathic doctor couldn’t seem to help with that. So I switched naturopaths.

A year ago I begrudged the Damn Diet. I knew about the Damn Diet before I ever knew I would be on it. After the diagnosis I read as much as I could about MS and about autoimmune disease. One book lead me to the next and each one talked about how diet affects the brain. Of course once I read Ann Boroch’s Healing Multiple Sclerosis I hoped and prayed that I wouldn’t have to go on the diet.

A year ago when I got the lab work back showing the yeast overgrowth problem I was sad. Angry. Sad. Angry. Annoyed. Frustrated. Distraught.

No one understood. No one cared. No one could relate. Not even my husband. Sure, he follows the diet with me — mostly. But he still orders a beer when we go to Tres Hermanas, our favorite Mexican restaurant. And he still does a shot of tequilla when the bartender offers it to him. And he still eats bagels on Fridays when he takes them into the office.

The Damn Diet separates me from the rest of the world. It makes me alone. It keeps me from enjoying things in life that I love and people whom I love.

A year ago I had lost interest in life. A year ago didn’t care whether my students’ papers were graded. I didn’t care whether the next issue of Under the Gum Tree got published. I didn’t care whether ThinkHouse Collective, the business I run with my husband, succeeded. I didn’t care whether the house was clean. I didn’t care whether the laundry was done. I didn’t care whether I wrote. I didn’t care whether I posted on my blog. I just didn’t care.

A year ago I was apathetic and unmotivated: the opposite of my true self, who is an activator in every sense of the word, geeking out over to-do lists, checking things off as they are accomplished, putting things away to create a sense of order and calm, and not resting until there is nothing left to do.

A year ago I didn’t think that anything I did would change my plight. A year ago all I knew was that I didn’t want to take drugs potentially more harmful than my disease. So if I wasn’t going to take drugs, then anything natural couldn’t hurt, right? But I didn’t believe that it would help, either.

The way I saw it I had three options: 1. take the drugs and risk exposing myself to a worse condition, 2. do nothing and wait out the disease — maybe I’d get worse, but maybe I wouldn’t, and 3. try a natural treatment plan that, if nothing else, would lead to a generally more healthy life regardless of how it affects the disease.

Since I am a doer I went with option three thinking “We’ll see.” Thinking at least I will be more healthy. Thinking at least I will probably lose weight. Thinking that even if there is no change with the disease then at least there are other benefits to this Damn Diet.

A year ago I thought I had to recalibrate my normal.

A year later, I am getting up at 5:30 a.m. two days a week to drive 45 minutes where I teach an 8 a.m. class. A year later I am teaching three sections of college composition and keeping up with grading papers. I am going to bed at 10 p.m., sometimes 9 or 9:30 when I have to get up at 5:30 the next morning. A year later I’m doing yoga three times a week and no longer experiencing numbness or pins and needles. A year later I am learning that the Damn Diet keeps me healthy. A year later I’m back to checking things off my to-do lists. A year later, my vitamin levels are up, my yeast levels are down and my bacteria levels are closer to being balanced.

A year later, all this feels, well, normal.

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Photo by Life_is_Good_Pete.

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