Tuesday, May 29, 2007

A Short in the Cord - An Introduction

When I was stationed in Germany with the Air Force, I was fortunate enough to live ‘on the economy,’ which meant that I did not live in the dorm, but had my own beautiful, little apartment a few miles from the military facility. The furniture was a bit eclectic and about twenty years old. There was one swing-arm lamp, harvest gold, which was attached to a piece of marble that sat over the radiator. Nothing remarkable about this lamp: it would turn on and off, it would light the darkness, it matched the fuzzy gold cover on the chair in the corner. But one day, the lamp suddenly flickered off. Then it came back on by itself. Sometimes it would just dim or flicker before popping on at the right brightness. It was unpredictable and very irritating since it was the only lamp in the living room and it would usually flicker off just when I was at the really good part of a book. I changed the bulb, I tapped the switch, I swung the arm all around, I banged on the lamp, I replaced the socket. It would be fine for days, then suddenly start to flicker or dim or just not turn on at all. Then the next day it would be fine. I later discovered that there was a short in the electric cord where the cord meets the plug. The protective insulation around the wire had been worn away thus interrupting the electrical flow, and the cord shorted out intermittently.

This story helps to explain Multiple Sclerosis (MS). MS is a chronic disease that affects the central nervous system (CNS), which includes the brain, spinal cord, and optic nerves. Basically, the immune system gets confused and attacks the nerve fibers in the CNS, wearing away the fatty myelin sheath that serves as insulation around the nerves. This process can produce inflammation and scars (or lesions) around the nerve fibers and can damage the nerves themselves. The inflammation and lesions lead to a disruption in the electrical impulses that flow in the brain, spinal cord, or optic nerve. In other words, some nerves have shorted out.

MS symptoms vary from one person to the next, and can include vision problems, stiffness, weakness, numbness, pain, imbalance, fatigue, bladder and bowel problems, speech and swallowing difficulties, emotional changes, and problems with memory and thinking.

The cause of MS is still unknown and there is no cure, yet. There are disease-modifying drugs that have been shown to slow the progress of the disease and to reduce the severity of attacks, and there are some drugs that can provide relief for some symptoms. But until that broken cord gets replaced or repaired, the lamp will continue to malfunction.

These essays describe my own experiences with Relapsing-Remitting Multiple Sclerosis, which is a ‘type’ of MS where the patient experiences an episode (aka attack, flare-up, exacerbation, or relapse) of some neurological symptom that is followed by a complete or partial recovery period, or remission. Each day is different – no, actually, each hour is different. My disease is as unpredictable as that lamp in my apartment living room years ago. Because of the unpredictability and the variances in symptoms, it is very hard to explain to other people what I’m going through or why sometimes I’m suddenly unable to do things that I could do earlier. I need to share my experiences, to explain, to come to terms, to mourn, to heal. This is part of my therapy.

By writing these essays, I hope to tell a story that will enlighten. I hope to explain to people around me what I am experiencing so that they can understand. I hope to share my experiences with other people who have MS so they can see that they are not alone. But mostly, I hope that I’ve written a story that is interesting to read and not too boring.

In the pages that follow I make references to fatigue. I have a need to explain about MS fatigue because it is the most common symptom of MS and the most difficult to explain or understand. 75% -85% of people with MS have it, and 50% - 60% say it is their most debilitating symptom. It is the major reason why people with MS go on disability – not because of muscle weakness or blindness or dizziness, but because of the fatigue.

Fatigue refers to a lack of physical or mental energy, or both. Everyone has low energy days so most people know how it feels not to have the energy to do much. MS fatigue is similar, but different. MS fatigue is constant – diet, exercise, pills, or caffeine does not necessarily relieve it. Stress and hot weather may make it worse. MS fatigue interferes with everything in my day-to-day life. It impacts my productivity and interest in life. But it is invisible so you can’t see it and you don’t know when it’s bad. You can’t tell when I’m pushing through the day just to get back to bed. You can see when I’m walking with a cane or have a patch over my eye, but you can’t see the fatigue.

This fatigue has caused me to learn “coping strategies.” I have learned how to choose my activities for the week or the day, and to make decisions that will not lead to a collapse in public or at work. I have become very selective in what I do, which means that I have to give up some activities each week. That makes me sad, but I’ve come to terms with this. It has forced me to evaluate my life and determine what is really important to me. I can’t do as much as I once did, but now I do the things that add value to my life and are important to me or that bring me joy.

And writing brings me joy.

CONTINUE TO THE NEXT SECTION

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4 comments:

  1. Hi Joan!
    I read your story with great interest and would like to feature you in an upcoming article on my blog about my own journey with M.S.: Sunshine and Moonlight.

    Here are the details on how to submit your story: http://sunshineandmoonlight.wordpress.com/category/o-sole-mio-sundays/

    I hope you'll tell your story to my readers! Kim

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  2. Hi Joan--

    I have been discovering and reading different MS blogs (mostly through the Carnival of MS Bloggers.) I have had MS for about 10 years (I'm now 37), and it's comforting to see someone else who took quite a while to get diagnosed.

    My symptoms started out quite subtly, and I added one or two new things each year. Double vision finally clinched the diagnosis after about 7 years of confusion.

    I had my most recent attack in May - June of this year, and I haven't bounced back so well after the steroids. I fear that maybe I am entering the 2ndary progressive phase. Not sure.

    I'm glad to have discovered your blog and invite you to visit mine: www.msfriend.com. My husband, a software engineer, likes developing websites and I love writing, so we'll see how it goes.

    Take care and I look forward to reading more. I also like your history blurbs at the top of the posts, giving the readers points of reference.

    Sincerely,

    Jen

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  3. Loving the lamp analogy. And nice to meet you. :)

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  4. Hi,
    I am a patient MS patient. And I have not been real well. I loved meeting you and this is a great blog to get into. I have been very depressed as I have one person, my husband who is my support system and there is no real family to help. I am angry as well as depressed so I need to stay away from happy ms'ers.

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