How do I live with multiple sclerosis?…I just do it!

When people ask me how I do it, how do 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 properly 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 tell MS, “Get lost.” Wouldn’t that be incredible if it worked? Only I would use some rather different words that might offend some people and I would be sure to bring an uzi, 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. I really have no other viable option. I can try ignoring it, but ignoring something that is daily hindering my life and chiseling away at my insides just isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. I get to ride around in a wheelchair all day and no longer have to go to work. Really? You want to make that comparison.

But if they could look inside my body and truly see what I am dealing with every day…oh, my, what a different story they would have to tell. They would see the countless moments of pain, muscle spasms, brain freezes, bathroom mishaps, dropping of anythings I hold onto, swallowing difficulties, fatigue, vision problems, and dizziness I go through.

If there was a picture window into my MS world, 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 and others are completely destroyed. The foundation is still there, but the pipes have burst, the electricity is out and the roof has blown off.

After a storm people work tirelessly to patch things up as best they can to try and get their house back in working order, but if you have ever been through a storm you know that things are never the same in the house. There will always be remnants of the storm that blew through and never a guarantee that another one won’t happen again.

Today, I live in a pieced together body with duct taped wires, glued together rafters and heavily caulked windows. Things still leak, wires still get crossed and new storms still show up. What do I do? 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.”

MS Gets on My NervesMS WarriorMS Superhero

 





8 replies
  1. Judith Norris
    Judith Norris says:

    Just do it is right. Too many let their issues cloud the way they view the world. I have had MS since 1958, taught 30+ years, now retired but keeping on keeping on. I may have MS, but it doesn’t have me. Keep smiling!

    Reply
  2. Peggy Wills
    Peggy Wills says:

    Yep we just do it…you’ve described it so well. I think of a strom that has knocked me off the foundation and totally destroyed, strewn everything across the field. No wonder it’s tiring trying put it back together. There is something that duct tape doesn’t work for 😥

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

    Thanks Penelope for he encouragement. We do have to do it with out any guidance and that seems to be the only way to do it. I,m annoyed by the way well meaning people can make fundamental stupid decisions when they do their job. We do have to do it in everything we do.

    Reply
  4. Jan
    Jan says:

    Penelope, well said. Thank you for all your inspiration and I admire your strength and the strength you give us to “just do it”. Jan 😘

    Reply

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