I would love nothing more than to punch Multiple Sclerosis in the face

When you see me, you may see my hair fixed up nicely, my makeup looking flawless, my clothes neatly pressed and my shoes coordinating with my purse. I may have everything in place from head to toe including the smile I put on and the positive attitude I carry.

But underneath all the layers, below the wheelchair and leg braces, the real me exists. It’s a person who is dealing with an incredibly frustrating, painful, unpredictable and debilitating disease.

It’s easy to put on a good show for a few hours as I laugh and carry on about meaningless things. I can generally hold it together for a day out with friends or, as I did for years, a day at work covering up the tears and wiping them away before anyone has a chance to see them fall.

Then the moment happens when I find myself sitting alone on the couch, driving by myself through rush hour traffic, or in the shower, and I crumble into a puddle as life catches up with me. The emotional pain of living with multiple sclerosis is real.  I hurt, cry, worry, get angry and scared. I think about my struggles, my worsening progression, my future and I desperately long for things to be different than they are.

That’s the human side of me…the real me. I don’t pretend to be perfect and never profess to have all the answers. Living with a chronic disease sucks. It’s hard and sometimes it feels impossible to navigate through the obstacles.

Never feel bad for feeling. Never think you can’t cry, complain or have your own pity party. Those things are all permitted. The thing you can’t do though is carry those negative, weighty feelings around with you everywhere you go.

Have your moment, crumble, fall apart, yell, scream, cry, and even punch MS in the face…hard! Give yourself 30 minutes (sometimes each and every day) to let it all out, then shift your thoughts to the good things in life…those things that give you hope and purpose.

Today may be an extremely hard day for you and you may feel like you’re walking through hell itself, but you know what they say you should do when you find yourself going through hell, right? Keep on going…don’t stop.

Hang in there. You are going to get through this time in your life. Let the tears fall then take a deep breath and remember, tomorrow is coming which means anything’s possible.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

19 replies
  1. Roland Clarke
    Roland Clarke says:

    Late to your post so full of stark truths, because the MonSter roughed me up on Monday. Still battered and aching, but determined. Thank you for setting a great example.

  2. Stephanie Rothbauer says:

    “Have your moment, crumble, fall apart, yell, scream, cry, and even punch MS in the face…hard! Give yourself 30 minutes (sometimes each and every day) to let it all out, then shift your thoughts to the good things in life…those things that give you hope and purpose.”

    I needed this today. Thank you for sharing. ☺️

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Every day you spend living is a day extra of your life. It doesn’t matter if you are sick or well it’s still another day so use it as best you can. Don’t forget to enjoy something at least once a day. It’s your life so live it the only way you can.

  4. Tilly J
    Tilly J says:

    know that feeling so well, and no one in family recognises I’m ill. friends are more tolerant. got a week-10 days of pure hell coming up where I’ll be expected to do everything – up to and including food shopping for whole family (who I’m going to visit over christmas) not only have I done food shopping, I’ve also bought many presents on their behalf, and will be expected to cook for 20+ from Wed until I leave 6-7 days later. No thanks, no help, expected as I’m eldest and have no children to look after and siblings do. Looking forward to a few days at home when I get back to recover before back to work. am very low.

    good luck to all your readers, have a wonderful Christmas and a happy and healthy 2017, and look after yourselves xx

    • Margo mckay
      Margo mckay says:

      Tilly next year go away on holiday, take yourself out of a torturious situation and go somewhere warm and sunny and just chill out. Let someone else take on the responsibility of chief cook and bottle washer. Enjoy…

    • Sharon
      Sharon says:

      I know it is really hard to let go of the old you who used to be one wo organized it all. Been there done that but you need to make yourself a priority now. Share Penelope’s email with them. I found the world did not fall apart when I gave it up. Used to make huge Christmas baskets for everyone with 5 different cookies and 3 different candies. Did the dinners for 20 people. I now remind myself that everyone else is healthy and they can handle it as I cannot. Shocking too how they soldier on. I put the pressure on myself unnecessarily. There will be a new normal that accommodates your needs. You have a chronic illness and you are the priority! Educate them for all of us who look healthy but are SO challenged.

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