Living with MS

The Band, Summer 2008. We've been together roughly as long as I've been sick. (Jun Nakamuro Photo)

Yambique, Summer 2008. I'm proud of being able to fulfill a childhood dream despite this disease. (Photo: Jun Nakamuro)

Last month I celebrated my 5 year anniversary of being diagnosed with Multiple Sclerosis. If you don’t know what MS is you can google it easily enough for details but basically it is a little understood neurological disorder that strikes active healthy people in their prime. There is no known cause or cure. Women are 3 times more likely to get it than men. It’s common in the Northern latitudes but rare near the equator. If you look at lists of famous people with the disease, there are a lot of artists, poets and musicians there.

Sure, it has changed my life, and not all for the worse, either. Yeah, I can’t work enough to be the main breadwinner for my family (and thankfully I don’t have to) and sometimes I don’t have the energy to take on a lot at once. But overall, I am doing very well. I still have some minor symptoms but have not had a serious exacerbation for quite a while.  Generally, the disease will progress over time, eventually leading to serious disability. The prospect of ending up in a wheelchair someday sure makes you evaluate your life! At this point I intend to celebrate what is going right and enjoy it!

In August of 2003 the disease hit me suddenly. I know the exact day. My former band, Songo, was playing at Boulevard Park. We were the openers for a festival, the first to play out of 4 or 5 bands.

This picture was taken the last day I ever had feeling in my left hand.

This picture was taken the last time I was able to feel my left hand.

I like playing early, because once I’m done I can relax and enjoy the other music with that great high you get from just having played yourself. On that day, though, after we finished playing I was suddenly unbelievably tired. Zonked, like I had been drugged or something. I lay down to rest on the grass, then asked Mr. beatgrl to take me home, I did not even think I could stay awake to sit there and watch the rest of the music. The next morning when I woke up, my left arm and hand were asleep, or maybe I had pinched a nerve or something. I went to the chiropractor with no relief. There was still a loss of feeling in my hand. Over the next 2 months my symptoms worsened. First my toes felt numb, then my feet, then my lower legs, then my whole legs, the numbness spreading up my torso. And then there was the debilitating fatigue. The only time I have ever felt so tired was when I was pregnant. I thought that was normal for pregnancy, but looking back, could it have been the MS? Who knows?

So I did not know what was going on but I kept going to work, and even managed to get in two backpacking trips! One trip was quite a nightmare, what with not being able to feel my feet. The symptoms came and went, then slowly abated, but the left hand stayed the same.

Yeah, I was stressed out. Does anyone else remember how much that summer of 2003 sucked? Those were dark dark days. The G.W. Bush administration was bungling that post 9/11 national unity, our civil rights were disappearing with the Patriot Act, and then we had just invaded Iraq.  I cried in the car almost daily listening to news. Then on top of that I was dealing with a major marital crisis. These things are not conducive to health.

It was my hair stylist and friend Marjorie who was the first person to figure out what was wrong with me, and eventually, by October, doctors were able to confirm the diagnosis. The thing is, I could not make myself accept the immune modulating drugs the neurologists recommended. I’m skeptical about messing with this immune system we barely even understand. The doctor told me that these daily injections I can start giving myself might slow the progression of the disease by 30%. Not cure it. Not stop the progression. Not even slow it very much. Oh, and there are side effects. Huh. I went to the internet tubes to read and read. Wow, many people are doing great without drugs, many people are getting worse on the drugs. It did not take long for me to conclude that whatever it is, if my body is attacking itself, then it can heal itself, too. I decided to give my body the best chance to help itself heal. That’s when I changed my diet to an anti-inflammatory one. I eliminated wheat and dairy. I went to a naturopath, got tested for food allergies and lead poisoning and went through a detox regime. I started eating fish and flax oil.

I rested over the winter (if you can call it rest with the marital crisis and all), got some counselling, and went back to work that next summer season. The following fall of 2004 I got my first full time job with benefits. (Woot!) It was at a prestigious environmental nonprofit. I liked it but found it stressful as well. Within six months I could barely cope, and I started to lose my vision. So I quit and spent a month on the couch recovering. After that I had a real awakening. Since I was not commuting to work 30 miles away anymore, I had time for riding bikes to school with my son, doing errands on foot instead of in the car, and really loving the city I live in. Lately I have been able to balance my life in a way that doesn’t knock me out.

The bunny slope is fun, too!

The bunny slope is fun, too!

I’m not doing more than I can handle. I’ve slowly been able to return to work with the Forest Service as a part time temp and so far so good! I don’t know if I would be feeling as well as I am now without the support of my wonderful best friend and partner Mr. beatgrl. The healing of that relationship has had the best rewards of all. My friends and family have been great. (I love you all!!)

A few of my chronic illness tips:

Slow down and take time to enjoy all the things you like to do. I’ve enjoyed indulging my creative side with music, writing and crafts. Instead of a constant rush rush to do errands and housework, sometimes I will allow myself some downtime to read or do a crossword.

Learn to say no – don’t take on too much. Every time I try to work full time I end up too tired and useless at home. I’m still trying to accept working part time without guilt. I need at least one rest and recharge day a week. Then I am a better mother and wife and everyone wins 🙂

Eat the best quality food you can. Pretty obvious. But nothing like a serious disease to make you determined to keep the poison (I’m looking at you, Krispy Creme!) out of one’s body. And I justify the extra expense of organic food because it is my medicine.

Avoid stress whenever possible. See below for my favorite way to lower stress.

Yoga has been magic for both body and mind, and could be the most important thing I’ve done for my health. I started at a Yoga for MS and chronic illness class, then when I improved I was able to go to classes at a “normal” yoga studio courtesy of a grant from the MS Society. I can’t say enough about what a difference it has made for me.

It’s amazing how many of us, mostly women, are suffering from these mysterious auto immune disorders. Fibromyalgia, pulmonary fibrosis, lupus, rheumatoid arthritis…and that’s just people I know well!! MS is practically epidemic here in the Northwest. Since these are “invisible” diseases for the most part we don’t realize how widespread they are. What has happened to our environment to sicken us all so? And why can’t we figure out the causes? I hope someone can find out, because what we really need to do is prevent it. Until then, we can try to make sure our quality of life is the best it can be.

The traditional five year anniversary gift is wood. Maybe this is the year to put in those apple trees…


5 Responses to “Living with MS”

  1. 1 Cherie November 19, 2008 at 5:01 pm

    What a wonderful thing you have done to share this very personal and painful enperience. There are others out there that will gather courage from your beautifully written story. I love you more than you can know, and am very proud of you and all you have accomplished. You are truly inspiring to me.

  2. 2 DCup November 19, 2008 at 6:55 pm

    Thank you for sharing your story. Your tips are valuable to anyone with or without a chronic disease. I’m glad you’ve found a way to live with MS.

  3. 3 Vanessa November 19, 2008 at 11:55 pm

    Hey Woman, what a great entry and what a positive person you are. I have always admired how you have taken MS in stride and have taken control of it rather than let it take control of you. Ironically, because of your changes in lifestyle, diet, stress, etc. you’re probably healthier now than you were five years ago! Funny how the world works. Thanks for sharing this. ~ V.

  4. 4 Cateepoo November 21, 2008 at 6:27 am

    Wow! Your story and outlook on life are amazing. Thanks so much for sharing.
    I was diagnosed with RA four years ago. I tried the drug route, only to find myself getting worse. Once I started seeing a naturopath who put me on a gluten/dairy free diet and supplmented my body with things it was lacking, I started seeing improvements. I am finally off all drugs and like you, believe my body is wise enough to heal itself, if given a chance.

  5. 5 Roger January 22, 2009 at 8:28 pm

    Thanks for writting.
    I am a SLOW Man, just ask.
    I remembered you say’d you’d wrote this.
    I did’t know. Of course I want the best for you.

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