Friday, September 14, 2012

Can You Do Tricks?

I have been keeping up with my new-found CMT-bloggers, and recently two of them posted about 'tricks' they have created, from having to live life with CMT.  That doesn't mean pulling rabbits out of hats, or sawing someone in half...it means all the little adaptations they have developed over the years to complete tasks, get through the day, and survive with this disease.  Their posts have inspired me to take a good long look at my own daily routines and tricks so I could best explain them to others, and raise more awareness for this disease.

So what are mine?  It was easiest for me to look at these tricks in groups, related to the body parts they've been developed to assist.  Because of my CMT my legs/feet and arms/hands have been compromised, so there are tools I have acquired over the years to help me be successful...but actually the first 'body part' I thought of was my back.  I am not sure if I would say my back has been the most compromised by CMT, though it seems to dictate my life with the firmest of hands and unyielding opinions on how I should live.  Because of weakness in my trunk, my muscles are not strong enough to hold my bones in place, which have a habit of turning and twisting in the most uncomfortable and disgusting ways...it's probably what frustrates me more than anything else I deal with on a daily basis.  I rarely have 'pain free' days, though some are certainly better than others!  And any injury I have suffered in the past has been back related...I went through year after year of re-occurrences of a severe injury I suffered in 2003, causing me to live in bed for 2-3 weeks at a time in order to recover.  Thanks to continued pool therapy and regularly scheduled Chiropractic treatments, I have managed to get to a point of stability...though it often seems as if this point is delicately balanced on the edge of a cliff.  As long as I do the following things, I don't fall off the cliff, and I can keep going: 1. Always have a seat cushion with you wherever you go, no matter what, even if you look silly carrying it around.  You'll be happy in the end, and your back-end will be happier!  2. Spread errands out, so you have breaks in between to sit down, or lay down (I didn't listen to that one today...I've already had to take one muscle relaxer, and lay on ice packs because of it.)  3. Always know what the seating arrangements will be for restaurants, friend's houses, libraries (etc.) that you may want to go to--are there chairs available with flat, straight seats and backs?  Will the place be too crowded, and all the chairs taken?  Will there be nothing but benches and lawn chairs?  (I don't go to those places.  No outdoor concerts or bonfires for this girl!!)  4.  Leave enough time in each day to lay down.  A lot.  (That's the one I probably dislike the most.)  There are days where it seems like all I do is stay at home, taking turns sitting down and laying in bed...anyone else who is forced to do this on a regular basis, knows that it gets old, FAST.  Here's a picture of my lovely royal blue seat cushion, which despite it's bright color, I've managed to leave in numerous restaurants.  Luckily I've always gotten it back!





I suppose my legs/feet would be next...what I have to help them function are my Helios.  I can't wear anything heavier than socks without having those on, because I am unable to lift my feet to walk--this is because of the foot drop I have, due to the CMT.  Without the braces, my feet are very heavy, as if they are encased in cement.  I actually walk around a lot at home without the braces to give my feet a break from them, and hold onto the walls and furniture when I need to.  But in order to wear shoes, my Helios are my faithful friend, and very necessary!  I also need to follow rules when it comes to my legs: 1. When walking long distances...oh, wait.  You CAN'T walk long distances.  If there IS a lot of walking, make sure there are places to sit down along the way to rest (see rule #3 in 'back' section, as it applies to these random seats.)  Let's just say I don't go to the mall very often!  2. Make sure you time your errands to coincide with small check out lines, so there is limited standing...as standing still is hard.  Noon till about 1:30 is a pretty bad time to go to places such as the bank, because people are on their lunch break, and lines are a definite! 



That leaves my arms/hands.  There are a lot of tools I've acquired to assist me, my scissors being at the top of my list.  I have them all over the house, and they are made for people who don't have good use of their thumbs.  You see, the first noticeable symptom of my CMT was losing my thumb muscles...making my hands very weak!  Because of this weakness I've overused the muscles in my arms and upper back to compensate...and unfortunately when you overuse muscles which are atrophied to begin with, you tend to lose them even quicker.  I've adapted the way I do most things because of my lack of muscle and mobility, from locking/unlocking my front door with both hands because I can't grip or turn keys, to how I brush my teeth (also two handed.)  I have pencil grips I put on pens and pencils and art brushes to make them wider, special rocker knives and meat scissors to cut meat, but my everyday scissors are what I use most.  The way everything is packaged these days is ridiculously hard for me to open, so I cut EVERYTHING.  And if it's something I can't cut, I tend to open it with my teeth...those are very strong!  It's funny when someone asks me if Charcot Marie Tooth disease means I have something wrong with my teeth, and then I proceed to open a box in front of them by chewing it apart. :-)



I guess those are my tricks...some of them, anyway.  I really don't think about them much as I go through life, to tell you the truth.  They are just part of my day.  I don't even think about CMT when I put my braces on--I just put them on and go.  I think as we move through September, trying our hardest to raise more awareness and teach more people about this disease with the funny name, these tricks and differences become more apparent...but you'd be surprised how little us CMT-ers actually think about all the things we do to make our lives livable.  We just do them, because...well, you do what you have to do.  And I will keep doing my tricks, as long as I am able!

 

16 comments:

  1. You amaze me - God bless you!

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  2. Wonderful post showing what life is REALLY like for those of us with CMT.

    Tired of reading all those "inspirational" stories about CMT'ers climbing mountains or running marathons or doing everything they want to do in spite of their CMT.

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    1. I know, right? More power to them if that's what they can do...but sometimes I'm just happy when I manage to run my errands!

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  3. Love this post! I also plan my life around when lineups will be shortest. Lunchtime @1:30, grocery shopping @7:30AM (which is better anyways as there is more selection). What is the gadget on the far left hand side...it looks a bit like a BBQ lighter.

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    1. Thank you! And you're right--that thing on the left does look like a BBQ lighter. It's actually a pair of my scissors, which are latched closed. I haven't ventured to the grocery store at 7:30AM, but I may keep that in mind as that's one of the worst places for long lines!

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  4. Great blog Christine ! We, meaning those of us with out the limitations of your CMT , would never have thought of the many devices you use to make your life easier . Not only the use of those devices .... but maybe even the unconventional ways some things might be used to assist you ....that we'd never think us . We all do what we need to do . Resoursefullness surely does seem to help a great deal in your case !And by the way , I happen to adore your blue padded cushion , no matter what you wear, you always seem to make it fit into the outfit ; > )

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    1. Haha...I do always try to be coordinated! Thank you for your lovely comment, and for continuing to read:-)

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  5. I love this! I am so glad we are sharing the tough-stuff. I actually find it harder to write the challenges than the sunshine,

    But I love smiling as we share moments from the day. I will even pick a store based on the layout. If I need milk, I go to the store that has it closest to the front of the store :). Though, with my ankle injury, I have been using the scooter carts and they are awesome!

    Thanks for sharing your tricks! Wishing you a healthful day! And I am so with you about the lying down getting old fast! Thank goodness for great blogs to keep me entertained :). Rock on!

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    1. Thank you, Lenka! I also am very thankful for these blogs (yours is a favorite,) to keep me entertained...especially during those 'laying down' moments. Together we'll all rock on! :-)

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  6. Hi Christine,
    Thanks for continuing the CMT Tricks post...I am starting to draft mine but can't finish it til I'm back home to take all the pictures. I am with you on all the scissors...had never thought of that. I have so much trouble opening packages it's ridiculous!

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  7. Hi Michele! Those scissors are definitely a life saver...I actually got two pairs in target, and one in a fabric store. They are a huge help! :-)

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  8. Hi, great blog! I found you site when I was researching the Helios. I just returned from Las Vegas and I am trying to adjust to the Helios (from my old plastic afos). I am writing a blog about my experiences, if you'd like to check it out. (http://itsmelori.tumblr.com/ ). I'd love to hear if you experienced an adjustment period and how long it took (if you already wrote about it, can you direct me to the post?). thanks!

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    1. Hi Lori! So glad you found the blog...I will definitely be checking yours out! I did write about the Helios in my post Miracles Do Happen: http://atticusmom1.blogspot.com/2010/10/miracles-do-happen.html

      There was somewhat of an adjustment period--probably a couple weeks of just getting used to a new way of walking and balancing. But I noticed amazing differences during that time too:-) Good luck with your Helios, and your blog!

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    2. Thanks for the response Christine! I'm glad to hear an adjustment period is normal. After day 4, my knees are in pain, my hips feel out of place, and I am having a hard time walking any type of distance so I wonder if the fit is off or if this is the adjustment period. Either way, I'll talk with Mitch about it later this week after giving the Helios a few more days.

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    3. Definitely share all of that with him...and take plenty of breaks outside of the braces. It takes time to get used to walking differently, when you walked the 'old way' for so many years. Good luck with everything!

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