Life with RRMS: It’s a Variable Thing, You Wouldn’t Understand.

  • The National MS Society describes an MS attack like this:

     

    An exacerbation of MS (also known as a relapse, attack, or flare-up) causes new symptoms or the worsening of old symptoms. It can be very mild or severe enough to interfere with a person’s ability to function at home and at work. No two exacerbations are alike, and symptoms vary from person to person and from one exacerbation to another. For example, the exacerbation might be an episode of optic neuritis (caused by inflammation of the optic nerve that impairs vision) or problems with balance or severe fatigue. Some relapses produce only one symptom (related to inflammation in a single area of the central nervous system) while other relapses causes two or more symptoms at the same time (related to inflammation in more than one area of the central nervous system).

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    To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. Most exacerbations last from a few days to several weeks or even months.

     

     

    I've had relapsing-remitting MS for over 22 years and have tons of experience managing symptoms and navigating attacks. So, I can tell you exactly how to detect and what to do when you feel something might be coming on. (Not!) Wouldn’t it be great if years of living with MS resulted in an expertise in living with MS? What I wouldn’t give for that kind of control. How can I possibly tell anyone what to do or how to determine if an attack is coming when I can’t even do that for myself!

     

    We know that we each have a unique version of this disease and we know that it's unpredictable. That’s MS 101 - the most important thing to understand when you are diagnosed. All your pre-conceived notions about MS won’t necessarily apply to you. This can be comforting, yet distressing at the same time. Not knowing what is going to happen leaves us with a large list of frightening questions that have no answers.

     

    I can safely say that for me, the uncertainty is one of the hardest parts of living with MS. While no one knows what will happen in the future, most don’t have scars all over their brain and spine, nor do they have that list of strong possibilities to choose from. This is why my every day is like walking a tightrope of hope and fear. I’m holding a pole for balance, keeping my gaze straight-ahead and trying to avoid looking down at what might make me fall.  “I’ll be okay” is virtually impossible to notice from this height. And while I’m concentrating on that thin line, I can’t see the wider view that the audience does (Hey, she’s having an attack! Get her down from there!) and I can’t hear anything. Every neuron is working on forward movement, looking to where I can place my foot and hoping to have the opportunity to do it again with the one waiting behind me.

     

    During these two decades I’ve become familiar with what my brand of MS looks like. This is my version. I know how to live it. But, quite frankly, that is a total fallacy. (And don’t worry! My eyes are closed while I’m typing this so I can maintain my internal subterfuge!) The limitations that I’m living with today may not be the same tomorrow. I'm sure  you can imagine how this limits my perspective.

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    If you are living with MS you probably understand. But if you aren’t and you are reading this because someone you care about has MS, then read on. Perhaps the specifics of my scenario will help.

     

    When I wake on any given day I know that the symptoms I’ve collected over the years will be part of it. It is fairly safe to say that my day will include: problems with balance, dizziness, weakness, fatigue, an inconsistent ability to stand or walk, incontinence and oh, I can’t pee. (Those last two are just wrong!) But I have a routine and on most days I’ve got my emotional and logistical arsenal at the ready. The problem is that I have no real way to prepare for the severity of the symptom. One day I can make dinner, set and clear the table then load the dishwasher. Other days I can’t stand up. I need to develop a new coping strategy on the fly while dodging emotional land mines of what I can’t do. And then I’m supposed to find a grand perspective??  It’s like trying to read a book while you are juggling a pinky ball, an egg and a refrigerator. Something will fall.

     

    I consider myself lucky. I have a home audience. My husband is here to tell me what I can’t see, standing on the opposite platform, encouraging me along, knowing when to remind me there is a net below me and that I need to pick up the phone and make a doctor’s appointment.

     

    Gotta love that guy! (My husband that is... I mean my neuro is awesome and all...but...)

     

     

     

Published On: February 10, 2011