My Life Living With MS

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:

The National MS Society

Web MD

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 that encourages 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!

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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, cognitive impairment and chest banding (aka MS hug).  I have dealt with other effects such as social anxiety and depression.

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 some living with MS and do not require much 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 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.  At one point I resented people for their neglect, but now I just “move on past it” as my Aunt Jenny would say.  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.

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.

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91 thoughts on “My Life Living With MS

  1. Soft hugs. I suffer from Fibromyalgia and I always thought MS was so much different than what I go through. Turns out that all though it is different we suffer a lot of the same symptoms and medication. Thank you for sharing please keep building awareness and helping others understand auto immune conditions like ours.

    1. I will do. I think MS is being reclassified soon as immune-mediated instead of autoimmune, but I wasn’t going to get caught up in semantics. Either way it still sucks! lol
      Danny

  2. My mother was actually misdiagnosed with MS for a few years, so I know a little bit about the subject. Thia post really opened my eyes to much more than I comprehended about it at the time. It’s great to hear you are making the most of it and a good support system definitely helps along the way. And you never know, sharing your story might help someone see the signs in themselves or those around them. I’ll admit, I have neglected my health and this post inspires me to take a step back and reevaluate some of my lifestyle choices.

    1. That makes me smile Jorda. I have found that it is natural to go through a bout where, as the diagnosed, one resents those with healthy bodies; a version of why me. I don’t get upset at people that are “healthy” who neglect and abuse their body, but I do wish that they would wake up and appreciate what they have.
      Danny

      1. Well, it’s a normal thing for anyone to have why me moments- we’re human and we have desires, wishes, and envy. You make a good point though. Especially in society today, I feel like people don’t appreciate things to the fullest. And not just meaning health, but in other things as well.

      2. Jorda, it use to bother me and I would voice that irritation on my blog. But now I just talk about my experience and move along. Most people don’t listen anyway so why waste the energy?!
        Danny

  3. This post hits a chord with me. I lost somoeone to ALS. He was a ballet dancer of Balshoi caliber. When I met him 15 years ago and we became friends, I admired him so so much for his talent and determination. He was brilliant, but a nobody in a God forsaken country. We both left it. Fast forward fifteen years later, a great international soloist of only 35 years, the disease took him in no less than 4 months. Doctors had never seen it move so fast. It had found fertile ground in his worked-out but also worn-out body. There would have been a chance, but it all went way too fast. I have a post on him here: http://ana-calin.com/2015/02/19/save-a-life-a-world-class-ballet-dancer-paralyzed-in-full-glory/

    1. Thank you for sharing your post Ana and I am sorry to read you lost your friend. It is my hope that a cure is found for all autoimmune disease soon. Hugs.
      Danny

      1. Yes, Danny, for sure. He would’ve made it too, it shouldn’t have been life-threatening. But he was diagnosed in December and in June it was over. The disease did not kill him, I must mention. It was his choice, because he depended on technology.

  4. I feel compelled to read this post over and over again. A lot of strength shines through, a very clear mind and no-nonsense personality. You are stern and firm, because you appreciate the important and have learned to discard the nonsense. I’d have a thousand things to say about this post, but most of all, thank you for sharing this with us. I truly believe we have a lot to learn from you.

    1. Thank you. Sometimes my “stern and firm” style rubs people the wrong way. But, it is my way of grabbing them and shaking them until they at least think about their life. I believe Socrates said it best…”the unexamined life is not worth living.”
      Danny

    1. And everyone has to walk in their own shoes. I just wish more people could appreciate what they have, especially health, and realize how incredible life is. Usually it takes adversity to jolt us into this mindset.
      Danny

      1. So very true! I struggle with some health issues as well at times (depression) and it can be hard for others to imagine what that is like. You just don’t know unless you experience it. I admire all you have done with the daily challenges you face!

  5. Bravo! I am going to see a neurologist tomorrow morning after having a brain MRI on Monday. There were “mild changes” in the white matter. I’m staying optimistic until I hear his assessment. Your words have been very helpful and inspiring. Thank you.

      1. Thanks. I saw the doctor, he asked me a ton of questions, I completed reams of paperwork. He wants me to come back for an EEG and will discuss MRI results at that time – hasn’t reviewed it yet.

  6. I’m a nurse at a rehab hospital and I often get the pleasure to work with patients who have MS. I might say, your attitude is enlightening! I watch the roller coaster of emotions as my patients explore this “new normal.” Everyone handles things a little differently. Your mind/attitude is your greatest advocate during stressful times. Keep up the positivity and I hope your journey is full of healing.

  7. You are inspiring, Danny! I didn’t know you had MS. I love how you promote a healthy lifestyle for yourself, and this is motivation for others. Wonderful post. Thank you so very much for sharing. Take care! Jenny

  8. Thank you for this post. Sometimes you don’t know where you will find the words of encouragement that you’ve been looking for to help you. I really enjoyed reading this post. I know your small yet powerful post was encouraging to me.

  9. This is a very inspiring post! I get numbness in my left leg and pins in needles throughout most of my body, especially in the face and tongue. Other than steroids, I haven’t taken anything prescribed because I am still seeking out a second opinion to verify the diagnosis. But if the second opinion confirms MS, I plan on living my life as is and maintaining a positive outlook. We are going down this secondary road because I was told by some doctors within my own family that it is often misdiagnosed. I am still hopeful that they got the diagnosis wrong, but if not I know I will be just fine. Reading this post confirmed my belief that it doesn’t need to control your life. Thank you so much for sharing this!

    1. I agree completely! Often times our first reaction is one of despair. But, MS is not the end of life and I am glad to read you have thought out your reaction. That is a good thing!
      Danny

  10. Now I see where your positive attitude comes from. I was not aware of your MS. You are an inspiration to us all. It only takes a medical issue to make us grateful for every day and for what we have and can still do. Older age is a challenge in itself. All the best to you and keep doing what you love with the support of family and friends!

    1. Sorry it took me so long to respond, but I took the night off last night. And you are 100% right in that sometimes it takes a disease to wake us up! Sad but true!
      Danny

  11. Thank you for sharing this – I wasn’t aware you had MS – and that’s a testimony to your personality that you haven’t let it define you as a person. I wish you everything you wish for yourself xxx

  12. This is really interesting. I would imagine everyone’s MS is slightly different. My mom has Parkinson’s and that has been my experience with that disease as well. So glad that you have a strong support system in place.

    1. very much so. In the MS community we refer to our disease often as My MS because it affects each person differently. It is sad in a way because that fact makes it more difficult to treat the pain and symptoms.
      Danny

  13. My great uncle had MS for a very long time. He lived for around 40 years with it, but was always very independent. I’ve seen how it can affect people after it’s progressed so long. One thing I remember him saying is that he wished marijuana was legal. It’s supposed to help with the pain. And now it is legal for medicinal purposes in Canada. Thankfully, he had a lot of family in the area, so he had a good support system.

  14. My respects to you for being so courageous. Living with disease is far more difficult than most people can imagine. My sister was diagnosed with ALL (acute lymphoblastic leukemia) last year and I have watched her put on the fight of her life. She told me the other day many people have told her she is a warrior or an inspiration, but she says she doesn’t feel like she is any such thing. She says she just wants to live, and anyone would do the same to keep living. I guess she doesn’t feel like a hero, but I still think she is courageous. I think you are too. If you let it, disease can kick your ass, but people like you and my sister are determined not to let that happen, and that gives the rest of us hope. Thank you for that, and God bless!!

    1. It is interesting you bring up the “warrior” point. Last year I befriended a lady that was fighting cancer also and she said the exact same thing: I just want to live. And most people want to live.
      Danny

  15. My sister-in-law has MS and describes symptons much like you have, she’s pretty amazing, she’s had to modify her activities but otherwise gets on with life. Thank you so much for demystifying a lot of perceptions and for sharing your story.. You’re an inspiration Danny.

  16. This interests me and helps me gain a better insight into my friend and mother in law to be both have MS. 🙂 it is a awful disease. My mother in law to be is wheel chair and mostly housebound ,my friend has put on 6 stone in weight because she is not able to do much -she is always in pain… I admire her even more for making the effort to be at my wedding in June. Thank you again for raising MS awareness

  17. Yours is one of a small handful of blogs I follow for the occasional MS-related post. My doctor keeps throwing ‘MS’ into our conversations – I have a neurologist appointment next week. He has been putting my numbness/neuropathy issues down to my diabetes, but the addition of headaches, loss of balance, “noise” intolerance has him looking beyond it now. I don’t know if I’m thankful or rueful.
    Thank you for showing there is life beyond _______________ (fill in the blank). Whatever the final prognosis, I need to find the will to push past it / through it / around it / whichever. Your positive outlook helps. Thanks.

    1. Marcus, I hope you don’t have MS, but if the results come back positive you know where to turn. And just like you said…there is life beyond MS. 🙂

  18. Danny, thank you for this very honest and heartfelt post. I have been tested for MS; however, I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Osteoarthritis and a handful of other things that together mimic the symptoms. So, I can relate to much of what you are talking about physically, mentally and medication wise. I also try to keep as positive as I can, though as I wrote recently, sometimes mega pain flares wear me down. It is examples like you that help me stay grounded. Thanks, friend.
    Lydia!
    PS anytime you want to talk Neil Diamond songs I right here! 🙂

      1. Mine too!
        Song sung blue, weeping like a willow
        Song sung blue, sleeping on my pillow
        Funny thing,
        But you can sing it with a cry in your voice
        And before you know it start to feeling good
        You simply got no choice

  19. Wow, very inspiring post. My sister has infant diabetes and she used to get that numb feeling in her legs along with horrible burning sensation. God bless you. You’re a true fighter. It’s amazing how you suffer from MS but you’re still doing something positive with your life and helping others with your words of wisdom. You’re a role model. God bless you.

  20. I always find it incredibly inspiring when someone with a disease finds all the positive sides to life and keeps enjoying them rather than becoming sad and grumpy. Not everyone manages to do it.

  21. Danny, I just stumbled across this post and, as someone who has been living with MS since 2003, I want to commend you for sharing your experiences with it. While it is difficult to do, I truly believe that it is only through sharing our experiences, can we truly help others. I recently lost a close friend to MS; while she had immense inner strength, she did not share her experiences with anyone. No one ever knew what to say or how to offer help. She ended up cutting herself off from everyone. I was one of the few she shared her life with simply because I was open and honest about what it was like for me to live with MS.

    I live by the motto that while ‘I may have MS, it does not have me’. There are days when it is more challenging to rise above that motto than others, but, overall, it serves me well. A positive attitude and a twisted sense of humour takes me a long way too.

    Thank you so much for sharing your experience with us.

    1. Hello Linda! Thank you for taking the time to drop a line. I have a similar motto…’I live with MS.’ Meaning I still live my life, MS is a small part of that life.

  22. Oh, the drugs! Fortunately I have very few side-affects from them, but had to start taking Gabepentin 4 times a day for the nerve pain, and to stop the electrical zaps I would get in my head when I moved it much. The sensitivity to loud noises I had no idea were MS related. This post has made me stop and take a look at myself and my symptoms, and see what I can do better. I too, was diagnosed in 2007, when my limbs all felt like they weighed 200 lbs each, and though sitting down, felt like I was going to pitch face forward into the floor, due to the vertigo. Thank you for helping to see some things for what they are.

    1. It is funny how we all continue to learn about MS even after having it for so long. You’d think we would be experts. lol But it is difficult to know what is and what isn’t a symptom because of all the craziness going on in the body.

  23. I appreciate that you mention the social anxieties that can come with MS. I was always a social butterfly after my first episode which affected my vision, balance, memory as well as other cognitive issues changed that. I remember having to attend my daughters back to school night shortly after my diagnosis and I remember standing to talk with her teacher and I just could’t put words together to have a proper discussion about my child’s progress. I have gotten better about the social anxiety but it is something that really took me by surprise when it started.

    1. It was new to me as well. I had never had issues with anxiety so when it began I didn’t know how to deal with it. It has been a recent development as well. I’m wondering if it could be medicinally created.

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