Danny’s World: My MS Update

Danny's iphone 022It has been a minute since I updated everyone on the MS front so here goes.  I have been off all my medications for about a year.  I will take the occasional pain pill, but I try to limit those because they are dangerous.  I stopped taking my injections of Copaxone in May of 2016 simply because I was worn out from giving myself an injection 3 times per week for nearly 3 years.

Without the medications I simply have to tough it out.  It isn’t easy, but I prefer the pain to all of the side effects of the pills.  I’m not sure which is worse, MS or the medicines used to treatment MS.

My two primary symptoms that I deal with are fatigue and lightning flash pains.  The fatigue I manage as best I can and have learned to rest a lot on the weekends.  There are still times when I am asleep at night before 9.  I joke with Evelina that I’m just getting older and eventually you’ll find me at the cafeteria at 4:45 pm eating dinner.

For my fellow MSers you understand the flash pains.  They are the ultimate in shooting pains in my hips, legs, elbows and hands.  They hurt pretty bad, but it’s nothing I can’t handle.  Like I said, for now I’ll deal with them versus taking carbamazepine.

All-in-all I cannot complain too much.  I am sure there is someone in this world who would gladly switch places with me.  Isn’t life funny like that?  We think we have struggles until we read the story of someone who is fighting an incredible battle.

I hope everyone takes time be thankful for the simple pleasures of being able to walk.  It it so easy to take it for granted.

Have a great Friday and a relaxing weekend!

31 thoughts on “Danny’s World: My MS Update

  1. “All-in-all I cannot complain too much. I am sure there is someone in this world who would gladly switch places with me. Isn’t life funny like that? We think we have struggles until we read the story of someone who is fighting an incredible battle.”

    Thank you for every reminder….

    e

    Liked by 2 people

  2. This has always been a coping mechanism for me during tough times…to remember that there are other people a lot worse off than me. That’s not to diminish our struggles, but to keep life’s ups and downs in perspective and stay strong.

    Liked by 1 person

    • Exactly. I have to remind support groups of this all the time. It is easy for groups to become a “woe is me” sessions and I warn them to not allow each other to sulk for too long. Chin up, eyes forward. MS requires you to be tough! 🙂

      Liked by 1 person

  3. You know Danny..

    For years I thought I had MS…
    all my symptoms points that way.. and everytime I read about your symptoms.. I can identify with it…

    I’m not able to walk by myself right now. I have to use a walker…

    That hip pain you mention that’s me..
    that not able to swallow.. that’s me..

    But all my tests came back negative 👎 for MS..
    and I’m progressing.. getting worse..

    So I love that last sentence you wrote…
    all those that is taking walking 🚶 for granted ..
    know how Just lucky 🍀 you are ..

    And yes I do know just how lucky I am.. that I’m still able to get around even though it’s slowly..

    We do all have to adjust to our conditions that are way beyond our control.

    So glad you are doing better..
    and can do without the medications..

    Keep up with the therapy.. I am trying to do the same… trying to strengthen the weakness of my hips. Back .. and legs…
    you are really an amazing inspiration..

    Liked by 1 person

  4. Pingback: Let Me Ask You A Question – 7/7/17 | Dream Big, Dream Often

  5. ” the simple pleasure of being able to walk”. Yup! I have an autoimmune disease (systemic scleroderma) that has been in a miraculous remission for 18 years now. But I can remember hobbling with two canes and on some days being hardly able to get one foot in front of the other. Gratitude! Thanks for this post Danny.

    Liked by 1 person

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