Well here I am realizing how long its been since my last post. My wife gave me the idea of sharing everyday life with all of you. She was sharing things with me that I have grown to know as normal but people (her included) take for granted.
Winter blues! They are real in anyone but its a big yearly struggle for me. I struggle with cold temperatures to the point I can be outside for a few minutes and then my hands, lower legs, and feet turn ice cold. And when i say ice cold I seriously mean take a steak out of the freezer and put it up against your side on bare skin cold. Cold feet wars in bed are rarely even lost by me. With cold extremities also means motor function shuts down big time. So much so that a can’t button my own pants after using the restroom or even grip that mug of warm hot chocolate. So most winter I sit in a mildly depressive state.
One of the major things that she was very surprised by is that I fall. Yes I said it I FALL. Not just once in awhile but often. Because of CMT the muscles waste away and no not at the same speeds. My muscles surrounding my knees are where I personally see this the most. For many years my Patella got weaker and weaker, but my Quads remained strong. First thought is great news my quads didnt deteriorate. But normal life with this was far from a dream. The imbalance of muscle strength caused me to have what I call “Floating Kneecaps.” With floating kneecaps my kneecaps sat about 1-2 inches higher than normal. Normally your kneecap sits in a U shaped socket and that gives it stability. So without that stability occurring my kneecap dislocated. Easily and often. One story I share that really gives a good look into the reality of it is…. Back during the winter of 2007 I was still pushing so much trying to hold down a job and I was employed by a local Car dealership as a Automotive Detailer. I loved this job so much, the people, the environment, the experience. But during this winter it was one of the hardest of my life. In the span of 3 months December through February I ended up missing 42 days of work. Yes 42! And by some miracle they kept me on staff. I didn’t miss a single day because of being sick, every last one of them was because I simply fell and dislocated and sprained one knee or the other. And a handful of them I was walking to or from my car at work or on the way to work. Each time i ended up army crawling back to my car and then slowly take back roads home because i had to use my arms to lift my legs up moving them from the gas pedal to the brake. (yeah not the safest but sometimes you got to do what you got to do.) Since then I’ve have several acl & mcl & cartilage tears. I have also under gone 5 surgeries, 3 on my left & 2 on my right. The big downside is its a ticking time bomb until i need another surgery on them to repair tendons and tears that will continually occur.
A more noticeable issue I struggle with is my hand function. I don’t have the ability to pinch. I cant touch my finger tips together with my thumb so picking up a penny from the floor most times isnt worth the embarrassment of using both of my pointer fingers to pick it up. Picking up a glass of water is difficult because I need to position my hand in a perfect position to wrap my fingers around it. And even then the strength in my hands is compromised to the point that dropped glasses have become a part of life. And the realization that my for month old son has more strength in his one hand than I have in my thumb. Holding a bottle during feedings has become a battle with his ever moving hands.
To be continued…..