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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{ 8 comments… read them below or add one }

Corinne December 10, 2013 at 3:04 pm

Excellent writeup – and thank you for this window into how you’ve been dealing with MS. I applaud you for taking the not-so-easy path and getting to normal.

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Janna Marlies Maron December 10, 2013 at 3:49 pm

Hi Corinne, thanks so much for reading and for the comment!

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Akilah December 14, 2013 at 8:52 am

This is really inspiring, Janna! Thank you for sharing yourself in such a powerful way! So many of us are too afraid to embrace a new norm, and your story is a great reminder of the benefits of doing the best you can, until you can design a newer, better norm. Keep on sharing!

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Janna Marlies Maron February 11, 2014 at 7:39 am

Thank you, Akilah!

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jackie January 11, 2014 at 4:47 pm

I’m glad to read this. I’m on my journey to getting an MS diagnosis, hopefully in the next few weeks. I had optic neuritis early December, my vision is still not back 100%. MRI showed inflammation, and the neurologist couldn’t say anything for sure since otherwise I was healthy. After I saw him my left side starts tingling, I have this creepy feeling of things(hands, bugs?) on my back and I start to put together all the weird things that have happened to me over the past few years. Extreme fatigue, weird twitches, other stuff. Just as I was really starting to enjoy being an adult and drinking red wine, coffee,and eating the skin on chicken. LOL. So all these diets are confusing, and I’m so lost. I hate medication and I feel if I ever don’t want to be sitting in an ER wondering if I’ll be blind again: I need to change it all. Worst part is I work in a bakery, I make the bread and the cakes and the frostings…ouch. Anyway, very happy to read this diet is working for you.

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Janna Marlies Maron February 11, 2014 at 7:38 am

Hi Jackie, I’m so sorry to hear about what you’re going through–I remember that stage of wondering what the hell was going on and non-stop thinking about what the hell am I going to do? If you really don’t want to take drugs, I would encourage you to do your own research, find the alternatives out there that resonate with you. I don’t know how much of my blog you have read, but one book in particular really made a difference for me and that is Healing Multiple Sclerosis by Ann Boroch. I highly recommend it. If you read it, I hope you find it helpful and uplifting–she has such a positive message. Just know that things do get better. I’d love to hear an update on how you’re doing.

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Selma March 23, 2014 at 10:25 am

What a wonderful blog–I don’t have a MS diagnosis-but all the symptoms-in the chronic lyme disease category or undiagnosed autoimmune. I read Ann’s book and thought it was wonderful. I’ve tried various candida diets in the past 7 years when things turned from FMS to neurological. Perhaps I was not on them long enough or took the right supplements long enough. What do you and Ann think about the research of Dr. Swank and MS and low sat fat diet. I don’t think she mentions it or takes in the 50 years of research and success by Dr. Swank. There seem to be MS recovery stories on very different approaches, so I find it very confusing ias to what the optimal diet is for autoimmune and neurological disease(Mcdougall/Swank/Jelinek versus the paleo/Dr Wahls/Candida diet approach).

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Janna Marlies Maron March 25, 2014 at 7:42 am

Hi Selma, thank you for your comment! I’m glad you find my blog helpful. I’m not familiar with Dr. Swank. And I agree that it can be confusing when there are so many different approaches and theories. I think the best thing to do is to make decisions based on what connects with you and stick with it. I was on the candida diet for almost a year before I really started feel better and to see noticeable difference in my physical health. Whatever you decide to do I would encourage you to not give up, because you will see results over time.

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