How I do it… living with multiple sclerosis

Share

When people ask me how I do it, how I get through my day living with multiple sclerosis? I’m not really sure how to respond. The best answer I have been able to come up with is, “I just do it.” I know that’s not a deeply profound response and Nike already has rights to the saying, but the question is not really something that can be answered.

MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just say to MS, “Get lost.” Wouldn’t that be incredible? Only I would use some rather different words that might offend some people and would be sure to have a battle axe and a few hand grenades along with me too.

Since I can’t force MS out of my life, I have to learn to live with it. There’s no other choice. I can try ignoring it, but ignoring something screaming in my ear and chiseling away at my insides isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. But if you could look inside my body and truly see what I am dealing with every day…Oh, my, what a different story you would have to tell.

If there was a picture window into my life, people would see that my Central Nervous System (CNS) looks much like the chaos after a storm has blown through town tearing up everything in sight. Some areas in my CNS have been damaged, others completely destroyed. The foundation is still there, but the pipes have burst and the electricity is out.

After a storm people work tirelessly to patch things up as best they can to try and get their house back working, but it will never be the same. There will always be remnants of the storm that came through and never a guarantee that another one won’t blow through again.

Today, I live in a pieced together body with duct taped wires, glued together pipes and heavily caulked walls. Things still leak, wires still get crossed and new storms still show up, but I “just do it.”

Elizabeth Taylor, who struggled daily due to lifelong chronic back pain, said it oh so well…“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and [gosh darn it], you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”

3 replies
  1. Tiffany
    Tiffany says:

    Hi Penelope, I’ve been gone for awhile with life stuff…….
    I really needed to hear from you today, the last few days have been extremely challenging from having trouble dressing myself to not being able to stand for 10 minutes!!! I really do miss the old days when I could do anything I wanted or needed to!! Truly has been an emotional roller coaster 🙁 Having read something from my gal Penelope has truly made me want to pull up my big girl panties and push ahead and say Just Do It!!! I’m not going to die just ALOT slower than I like…
    Oh Penelope you truly are the biggest inspiration to me, a lot of hugs and kisses your way XOXOX 🙂
    Thank you so much my dear Penelope 🙂 :). 🙂

    Reply
    • Penelope Conway
      Penelope Conway says:

      Glad you are back.I like how you said “I’m not going to die just ALOT slower than I like.” That’s my sentiment as well. You still have a lot of good things ahead for you. xoxo

      Reply
  2. Juana Driver
    Juana Driver says:

    Definitely an invasion, daily struggle and my you look wonderful!! And then one wakes up to another day.
    And talking about a storm, I’m still dealing with trying to put our lives back to “normal” after the Tornado.

    Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *