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Give Me a Break!

MS showed up with a vengeance in September of 1999.

It hit in my brainstem and I was completely debilitated overnight. In the space of 5 hours or so, I went from going to bed fine to waking up convulsing, severe vertigo, my eyes jerking around, sirens ringing in my ears, numb from my chest down, and absolutely no coordinated control of my voluntary muscles.

I didn’t have muscle weakness…just no control. I had the strength to stand, but not the balance…even holding on to something I would end up on the floor in less than a minute. Nauseatingly dizzy.

That was my life for 6 months to one degree or another…and then I slowly got better. Until the next ‘episode’, ‘attack’, ‘exacerbation’, or whatever you want to call it.

These days, 18 years later, I deal predominately with 3 things. Balance, cog fog, and sensory overload. Some days better, some days worse.

I know a pet peeve for some people with MS is when someone says something along the line of ‘You don’t look sick’, but for me I would have loved to be at that point. And I did eventually get there. As of late I am developing a pet peeve along the same line, but much different at the same time.

My current med has worked extremely well for me for over 10 years. No attacks, no new lesions, no active lesions, no brain atrophy and no side effects. It has allowed my body to heal to a certain degree and I have regained ground that I thought was lost forever.

And I ride a bicycle.

It’s a two wheeled recumbent, and I do some serious wobbling at times, but it is a bicycle and I do ride it. That seems to be the problem for some folks.

Because I am doing well and can do things that some people with MS can’t, I have been rebuffed by some with MS. I have been told that I can’t really understand what it is like to truly suffer with MS. I’ve been told that I am bragging when I talk about what I can do. I have been told that my experiences aren’t valid and that I shouldn’t share them in the same circles that ‘real MS people’ do.

That’s pretty harsh and it’s not true. It is true that people wouldn’t know I have MS if I didn’t tell them, but that hasn’t always been the case. I don’t tell people for sympathy (I hate that), and I don’t tell them to brag. One reason I tell people I have MS is to help bring awareness to the disease. But the main reason I tell people I have MS is to speak hope into a more-often-than-not seemingly hopeless situation. MS nearly killed me, and now I use MS as a platform to speak life for today and hope for tomorrow. Tomorrow is going to come, and how we face today will, and does, have an effect on what kind of tomorrow it will be.

I would never tell someone in a wheelchair that they shouldn’t share their story, or that their experiences aren’t valid because they can’t ride a bike. I would be vilified if I did that, and rightfully so. So why would it be OK to dismiss my MS story simply because I ride a bike.

We can’t know somebody by looking at their ‘today’. All of our yesterday’s make us who we are today. And today launches us into tomorrow….so please….

Give me a break!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Debbie Gu3
    2 years ago

    The only thing I can say is these people with MS may have been jealous, that’s right, the big green meanie as I like to call it may have reared its ugly head. If you were talking to me and told your story, I’d be impressed and happy for you. It’s great to hear when someone has a positive attitude and is making the most of their life.

    I’m curious, what exactly did these people say to you? I haven’t had any situations where someone said something to me, people usually go out of their way to help me. It is easy to tell when my energy is running out and I do use electric carts whenever I shop. So maybe I look like I need to use it.

  • stargazer0406
    2 years ago

    I understand when people in general don’t “get it” but when someone with MS treats you like that it’s unconscionable. I’ve been bed ridden, used a cane, a walker & a wheelchair at different times from this disease & right now am walking unassisted. It’s so unpredictable! Real MS people get that!

  • PS98107
    2 years ago

    My hat’s off to you!

    willpower and a positive attitude can get the brain make new neural connections and your will to change your situation did exactly that. That’s why you are able to do things like ride a bike. I have never taken meds for MS, I lost my ability to play multiple musical instruments when I was diagnosed 15 years ago and had muscular weakness in my left arm and hand. I got that ability back with willpower and persistence and my brain rerouted neural connections. Because of it. I am now a better musician than before my diagnosis and I am now able to do everything I did before my diagnosis. People don’t think I have MS but my MRI, which hasn’t changed since the first one, says I still do.

    Thanks so much for sharing your great story.

  • Julie
    2 years ago

    One of MY pet peeves is when people with MS talk down to others with MS. We get enough of that from the outside world. Come on people!! We are better than that. Years ago when Mitt Romney ran for president, I couldn’t believe the people that ragged on his wife. “She gets better drugs” or “She rides horses to help her MS”? and on and on. I didn’t like him either but come on with the shaming of other MS’ers!!

  • Tony D.
    2 years ago

    Good for you, man. That must have been tough, being given a hard time by others with MS. We both know this condition is all over the place and mostly unpredictable. Kudos to you for storming back to better health, and doing what you can to make even a little bit more predictable.
    Keep on keeping on.

  • potter
    2 years ago

    I am impressed with how well you are doing and that you can share your experience in such a well written article. I also tell people about my MS to build awareness, I had someone tell me I was bragging the other day, I told them I wasn’t I didn’t want any of this disease. Potter

  • DonnaFA moderator
    2 years ago

    Hi JKeith, thanks so much for sharing your story. What a terrifying experience! One phrase came to mind when reading your story – Still I rise. Keep speaking your truth, and thanks again for sharing it with the tribe. -Warmly, Donna (MultipleSclerosis.net team)

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