My Life Living With MS

As some might know, I live with MS.  I have never thought of myself as a MS advocate, but more of a guy trying to accomplish his goals that happens to live with Multiple Sclerosis. But it is a part of my life and I thought I would write a little about it.

First, here are a couple links describing MS:

http://www.nationalmssociety.org/What-is-MS

http://www.webmd.com/multiple-sclerosis/

I am not sure why I am talking about this so openly here as I rarely speak about the Monster to anyone but my wife.  I guess I thought it might shed a little light on awareness and let you see a little more about me as the person telling you to change your life, get healthy, pay down debt, etc.

So in 2007 I was on vacation in Ft Myers for Red Sox spring training baseball.  Go Sox!!  Anyway, while sitting on the beach I noticed a small, quarter sized numb spot on the bottom of my right foot.  When I returned to Charlotte I went to a neurologist, went through the testing and eventually was diagnosed as having Multiple Sclerosis.  Within a couple months of noticing the numb spot, I had numbness to my shins on both legs.  Eventually, the numbness would move to my fingers and other locations on my legs.  Numbness as it relates to my MS also brings nerve pain that I can only describe as a burning in my feet and hands that feels like fire!

My symptoms are as follows: nerve pain, numbness, blurry vision, headaches, severe fatigue, lightning flash nerve pain in my hips to my feet and my shoulders to my hands, wrist and general leg pain, hyper-sensitive reflexes, sensitive skin spots, sensitivity to loud noises/places and chest banding (aka MS hug).  I have dealt with other effects such as social anxiety, depression, strain on my marriage, loss of employment, etc.

The side effect of MS that I find difficult to deal with is the sensitivity to loud places and noises.  I find it difficult to be in loud places such as restaurants or bars where lots of people are talking or places with loud music.  I can tolerate it for about an hour, but then the noise combined with focusing on conversations drains my energy and I must go home.  Because of this lots of MS suffers learn to be home-bodies.  I am by nature a social butterfly and have had to make serious lifestyle changes to accommodate my situation.

Oh and these symptoms do not include the side effects associated with the ever-changing prescription medications!  Lyrica, hydrocodone, tramadol, Baclofen, Carbamezipine, tizanidine, Betaseron, Solumedrol, Copaxone….jeez!  And trust me these side effects are far worse than the symptoms sometimes!

With all this said, I have a great life!  I have the greatest support system ever; my parents, sister and brother-in-law, friends and wife are the best.  I lean on my wife and she holds me up with her strength, courage and patience.  She tolerates my ever-changing mood swings, helps me with some of the simple tasks with which I struggle, nurtures and loves.  I have said and will continue to say she is my angel!

I am not in a wheelchair like many living with MS and do not require any assistance walking.  Although I am no longer able to actively participate in physical activities like P90X, Insanity, basketball and golf, I have turned my life in new directions.  I love writing and I love the research required to provide an educated opinion on the topics that I write about.  I have reignited my love affair with first century Christian history, a passion that amazes and provokes my intellect.  And I focus lots of energy on living a healthy lifestyle.

Living with MS has given me a new perspective on life. I have very little sympathy for those that complain about life while living a life of neglect.  I find it irresponsible to watch people filling their bodies with tons of fatty foods, lying around and getting fat when their bodies are fully capable of doing better.  If you have read my strong opinions on this topic maybe this post puts that in perspective.  If you are capable of more you should expect more of yourself.  Period.  No excuses. Stop being so lazy. Get up off your butt and do something other than eating crap food, getting more complacent and less active!!!  I cannot and will not relent on this subject.  If you are able, then DO.  There is no excuse you can give me that will validate or justify an irresponsible lifestyle.  In the end I say “I battle a disease daily that is trying to destroy my body, yet I still DO. What’s your excuse?”

I will always advocate that people manage their lives with the responsibility that will allow them to live the life they want to live. Whatever that dream should be, live it: moving to a mountain lifestyle, changing jobs, traveling, entrepreneurship, paying off debt, living a healthy lifestyle, etc. You can have what you want, if you want it bad enough.

Big Dreamer

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40 thoughts on “My Life Living With MS

  1. Good for you to make it through to the other side regardless of the many challenging obstacles you have faced and endured. You are a role model to many others who say they can’t when they indeed, with effort and perseverance, can. If you reach one, two or many, amazing. This is clearly what you were meant to do. You should (or maybe you do) speak to others like intermediate and high school students, as well as adults. You might, through motivational speaking, kick a few butts in the right direction.

  2. You are an inspiration. I understand the nerve pain – diabetic neuropathy is my claim to fame. Numbness, feet either on fire or you feel you are walking on thing sharp nails. And the medication symptoms! Thank you for sharing — that openness not only gives us readers a better picture of the writer, but as I said a bit ago – it is inspiring.
    Thanks!!

  3. this was a very open, honest, engaging and informative read. Thank you – I am glad you shared it. I can really empathise with your sound sensitivity, I have an SPD which means that most of the time I would love to clap my hands over my ears and run screaming from a place like a restaurant. Not easily done without people looking on in surprise. What we would do for these things to be socially acceptable! I hope you have a lovely evening.

  4. Thank you for this enlightening and honest post. I was thought to have MS a few years ago; however, it was not confirmed. I have many other conditions that mirror your symptoms. I, too, do my best to live a healthy and full life in spite of my conditions rather than sitting around moping about what I can’t do! I call myself differently abled. ;-). I look forward to reading more here and thank you for following my blog.

    1. Lydiaa1614 thank you so much for sharing and I hope all is well with you! I am looking forward to following and reading more of your posts as well.

      1. You know everyone has their challenges, we know that, I have mine and need more than anything right now – inspiration. I am struggling to keep myself alive that is where I have fallen to but I am seeking out all the inspiration I can. Thanks to you.

      2. My hope for you is that you find a little joy each day to lift your spirit. Life can be a grind sometimes. When I am feeling run down or depressed I make sure to get outside and walk. I admire the clouds, watch birds or just findc a quiet place where I can sit and admire the beauty. It helps me to get my mind in the right place.

  5. Thank you for your honesty. I have fibromyalgia, which is often called a “sister illness to MS” and it is obvious that we have almost the same symptoms. Some years ago I almost landed into a wheelchair and the German doctors, completely over their heads, wanted to intern me because I would “fake” an illness no-one among them could understand. Now I deal with the pain this illness brings, eat my diet and exercise like anyone else, even look healthier as most as I am told, at least on the surface. There is, as you said, no excuse for not doing the best out of what we get. Thank you again for this very much needed wake up call and all the best for your health! 🙂

  6. Daniel,
    I hope you are getting to do all you enjoy on your vacation- I can see that you are doing one thing you love- writing, still. I enjoy your posts and learn so much from them. You will be glad to know that it is 21 days since I broke the TV habit. Now I need to relearn a new habit- the habit of getting off my chair and walking all I can. I am now 90 kgs in weight and I need to get down to 60. Like you encouraged me to give up TV through one of your posts, can you write a motivating piece about people struggling with weight issues and what to do if one lives in a hot climate for weight loss ?
    Susie

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