Disability

You Know You Have CMT When…

August 31, 2022

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I recently posted a CMT 101-type post to tell you all about my disability (disease, disorder, whatever you want to call it) called “What is CMT.”  I wrote that post primarily because I wanted to write this one, but I felt you guys deserved an explanation of CMT first.

I am a member of several CMT groups online, and one day someone posted simply saying “You know you have CMT when…” and waited for the comments.  Reading the thread of that post brought me so much joy. It was so refreshing for me to read things that are common in my life (and my family) happening to other people.

Now, before you think that’s mean of me to say, remember this: People with CMT live with it every single day.  We learn how to live with what it does to our bodies, and many of us have accepted this as reality.  So many people on the thread commented about how great it is to know there are others like them.  If you know these every day “mishaps” won’t change, isn’t it nice to know that you aren’t alone?

I asked the group if I could share this thread with my readers. I feel like this is a great way to give you all a glimpse into our everyday living.  For us, this post was hilarious, because it’s all statements we know to be true and have to live with every day.  For those reading who don’t have CMT, just take a second and imagine how your life would be different if this was your reality.  Seriously, imagine it as you read.

I’m not saying this to gain anyone’s sympathy. I just want you all to be more educated and aware of CMT and what it is.

Here’s how this works.  Each bullet point signifies a new comment, so some of them piggyback off of the one before.  These were taken (pretty much word for word) from the thread in my group. I’m not going to link the group or use a single name for the sake of anonymity, but know that there were hundreds of comments and a ton of people participating.  I don’t have the whole thread here, but I picked out some of the ones that I thought best showed our situations.

To my CMT friends in my group: thank you for letting me post this, and of course, for making us all smile and feel less alone.

Occasionally, I will comment on the bullet points, which will be highlighted and pink. This was not on the thread, it’s just for you guys. My commentary will be in purple.

Click here to read “What is CMT” for a better understanding of the disease

Ok, readers.  Welcome to the life of a person with CMT.

You know you have CMT when…

  • You buy shampoo & conditioner based size & shape of the bottle, that is its grip-ability, squeeze-ability, and ease of opening.
  • You buzz cut your hair so you don’t have to deal with it anymore because it’s too painful to wash/condition/cut/color/dry/style/etc anymore.
  • You give stairs the stink eye.
  • It takes you 15 mins to button one button on your top (Putting hubby’s dress shirts away are a huge pain too)
  • You look for aluminum cans with the pull tab because you can’t turn the can opener
  • but also…you can’t open the ones with the pull tab either
  • You can’t wear high heels
  • You know what it’s like to always be the caboose when you’re in a group of people walking (story of my life)
  • It takes you three times longer to do anything normal people do
  • Your toes don’t even touch the floor or work…they’re just decoration.
  • You look fairly normal but can’t get up a curb or off the floor without holding on to something
  • You fall over when standing still
  • When you try to hang out washing on a line – oh dear lol (learned that one in Japan…NOT easy)
  • You can twist your ankle getting up from the toilet
  • You fall down and can’t get back up
  • You can’t walk on grass
  • or a beach or any ground slightly uneven
  • or on rocks/gravel
  • or on flat ground
  • You open almost everything with your teeth (110% me, always!)
  • Tying shoe laces is a ten-minute operation
  • Texting is one finger only – your best finger!
  • You have to buy new dishes once a week
  • you fist bump rather than shake hands
  • Wearing earrings with butterfly backings is a thing of the past
  • When the aide on the school bus has to finish dressing your daughter because Mommy’s hands don’t work today.
  • Your cat jumps out of the way when you step nearby
  • Your 7-year-old paints your nails and your 3-year-old buttons your shirt for you.
  • when you can no longer sneak up on people
  • Putting a key in a door needs serious concentration (I can put the key in, but turning it is usually a challenge)
  • when your superfan son wants to be an extra on The Walking Dead because his natural walk is so zombie
  • You walk extra steps to find the shorter part of the curb, even if it’s only a few millimeters shorter.
  • You smile sweetly at the parents of young children mimicking the way you walk
  • You love animals because they don’t judge you
  • You would fail a sobriety test without drinking a drop of alcohol (I’ve joked about this for years. Luckily, this has not been tested)
  • muscle twitching keeps you awake and/or you wake up with Charlie horses
  • When falling down becomes a hobby.
  • You are amazed when you see someone fly downstairs without holding on to the rails.
  • When falling up the stairs becomes a hobby
  • when it stuns you every time you realize you can’t do something anymore (run, hop, button, skateboard, wear heels)
  • When your hubster and kids are really not surprised when you fall over and they stop asking where the massive bruising on your legs just randomly appears from just the slightest knock
  • You tell someone you have CMT and people ask what’s wrong with your teeth
  • When you try to jump rope and quickly realize that ship has sailed.
  • Picking up a pint glass requires two hands. (always)
  • When you hate getting out of bed since you know standing will bring on more pain.
  • When you tell someone the name of your disease and they think we have a mouth full of bad teeth or when they give you a look like you just told them you’re an alien or something.
  • When you go out for sushi and you have to ask for a fork because you can’t use chopsticks (Me every time)
  • You stand outside while the rest of your family goes into a store full of breakables.
  • Snow is your worst enemy. (There is a legit reason I hate the stuff, friends)
  • You spend half of your lunch just trying to open the stupid little packets the condiments come in (Yes!)
  • Pulling your debit or credit card out of your wallet with your teeth because it’s too tight to pull out with your fingers
  • Feeling stupid because you have to grab your drinks with both hands when you’re at the drive-thru window (It’s why I hate the drive-thru)
  • Dropping your change when the cashier gives it back to you
  • When you use a shopping cart as a walker while shopping
  • You have furniture strategically placed in your bedroom, so you can get to & from the bathroom relatively safely at night without turning the light on.
  • …or even with the light ON, for that matter!
  • You can’t open a damn thing.
  • You can turn your ankle just by stepping on a lost sock on the floor.
  • Cold feet 24-7
  • your new doctor knocks your elbows and knees 10 times during reflex checks just to be sure he’s not hallucinating (CMT patients tend to have no reflexes to speak of)
  • when 40mph winds have the ability to knock you over
  • When you have 3 fractured bones in your foot and don’t even know it (I once walked on a broken ankle for a month)
  • You have to look down all the time to see where you’re feet are going. The eyes send the message to the brain, not the feet. Screw walking tours…you see nothing.
  • When you drop something onto the floor, sometimes you just have to leave it until you feel you can retrieve it without falling over.
  • If you fall down you will crawl to the nearest sturdy item about 20 to 30 inches high to pull yourself up with. Getting up looks (and feels) like a fancy yoga move that only you understand.
  • The only difference between your “dress shoes” & casual shoes is their age & state of cleanliness
  • You dread hearing any medical person say, “Interesting!” because it is invariably followed up with a whole lot more docs being invited in to check you out! (Every one of my visits to the MDA clinic ever)
  • When the child-proof bootles become adult-proof…
  • When your husband won’t let you hold his cell phone. (This happened when Mister got his iPhone 6.  He passed it to me like it was a newborn child)
  •  When you see a spot on the counter, scrub it as hard as you can and nothing happens
  • When you’re not sure what’s harder: wrapping presents or unwrapping presents!
  • When you would starve to death if you didn’t have scissors. (or in my case, a really sharp knife)
  • When you get out of the shower with a bright red tan (I always wondered why my legs were bright red and blotchy)
  • Your hands move less the colder it gets
  • The pedal to open a trash can is stronger than the front of your foot. Useless pedal.
  • When you go to stand up from the couch and fall backward back in it… 5 times
  • While watching Game Of Thrones you think no way I could get around in that world.
  • I would need a Hodor!
  • It takes ALL of your grip strength to pull the thin paper wrapper off a drinking straw!

That’s just a little bit of insight into it, friends.  I hope this helped open your eyes just a little bit more into the everyday struggles of life with CMT.  Thoughts, comments, questions?  Feel free to start a discussion in the comments below.

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I'm Brianna, your new get-a-grip friend.

I love sharing my journey through life with my community, and over the years my sharing has turned into the opportunity to work with people and have a direct impact on their lives.

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