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I Fell And I Can’t Get Up – CMT Bad Days Exist

November 8, 2017 by Ashley 2 Comments

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This post is a little late as I intended for it though be posted in September because it was Charcot-Marie-Tooth disease awareness month. I didn’t want to bombard people with boring statistics about my disease. Instead I wanted to talk about one of the big things that I deal with being a person with CMT. One thing I wanted to showcase is that my life isn’t always easy.  I do get CMT bad days as I call them.  They are days when nothing seems to go right.

The scariest moment I have had as a mother happened to me when my son was around 9 months old, I’ll be honest that I can’t remember exactly how old my son was when this happened, but the day will be I gained in my memory for life. When my son was little I did a lot of running around the house because he was not an easy baby. I could never set him down for long before the screaming began.

On this particular day my son was acting up and I needed to get more diapers and wipes from his room in the basement. I laid him down in the living room in a spot where he couldn’t be hurt if he rolled over. I was thankful that he didn’t really like rolling over and wasn’t mobile. It was supposed to be a fast and easy task, but he had started screaming before I even set foot on the stairs. The next part is a blur. I panicked and moved too fast; the next thing I knew I was on the bottom of the stairs. We don’t even have just a single flight of stairs; we have a split set of stairs that I somehow slid down the stairs.

This was one of my CMT bad days.

When I tried to get up I just couldn’t. My whole body was in shock. I could barely feel my hands and feet. My legs wouldn’t hold any weight. Heck I couldn’t even sit on the ground because I was hurting so bad. I “crawled” which was actually me dragging my lower half across the floor 10 feet to get to my phone. I called a neighbor, but she wasn’t home. I was really starting to panic because my son was screaming at the top of his lungs and all I wanted to do was be there for him.

I turned back around and dragged myself up the stairs without letting my feet or ankles hit the stairs because that made me feel like I was going to black out. I can’t tell you how long it took me to get to my son, but I did it. I was bawling my eyes out as I picked him up. All I could do was hold him close to me. I felt like the worst mother. I had felt like I failed my son and it was all because of this stupid disease that I have.

In the moment I felt helpless holding my helpless son. It was in that moment that everything changed.

From that moment on I told myself that I was going to do everything in my power to keep myself safe and care for my son. I make sure that if I am feeling flustered or feel like my body is getting stressed out I take it easy and move slow to help prevent myself from letting my body get out of control. I struggle every day with caring for my son. Some days are easier and some are harder, but in general I manage every day.

Do you have any daily struggles that you live with?

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Ashley

Owner at Persevering Momma
Ashley is a 30-something woman that recently made some huge changes in her life. She grew up as a Chicagoan and moved to Indiana where she now resides with an amazing man their two cats. She is a new momma and loving every moment with her little man. She also enjoys spending time learning new things, reading, playing video games, spending time outside, and hiking when she is up to it, fishing, and in general loving life.
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Latest posts by Ashley (see all)

  • Yumi Baby Food Review – Is It Worth It For Your Family? - September 5, 2020
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Filed Under: Featured, Parenting Tagged With: Charcot–Marie–Tooth disease, CMT, Disability, Disabled, Parenting

Comments

  1. Deborah White says

    November 8, 2017 at 2:13 PM

    What a courageous and honest post! You inspire me to keep on truckin’ and be positive inspite of my physical limitations.

    Reply
  2. Shanna Uptergrove says

    January 12, 2018 at 1:22 PM

    Yikes!! That is always scary, especially when you have a kid in your arms or hands. I was bringing a game down from upstairs and somehow I slipped? Going down- and I blacked out for a minute. It is NOT fun. Enjoy all your time with him!

    Reply

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