Living with Charcot Marie Tooth Disease has its ups and downs. It affects your every day life, making things that are easy for others seem like daunting tasks. Working full time and being a mother to a beautiful hyper toddler can be exhausting for an average person. For someone with CMT it can be extremely difficult. I have learned to push through the pain and keep going, because what other choice is there? Should I lay down and let this disease over take me? Or fight and push to keep some sort of normalcy in my life? The answer is FIGHT. Fight until I can’t fight anymore. Over half of my family on my father’s side has this vicious disease. We all have learned to just keep going. I hope that my child never has to endure this, but if he does he will be taught to push through the pain and that he can do anything anyone else can do. The point is, sometimes I do believe its mind over matter. You may hurt, you may walk funny and be weak and struggle doing normal tasks, but you can do anything you set your mind to. You have to keep going, you have to push through and tell yourself you can handle anything. I know, easier said then done right? Wrong. It’s not easier said than done. You have to have faith in yourself and tell yourself that this disease does not define who you are. This disease does not make you weak mentally, this disease does not rule your life and this disease does not make you any less capable than anyone else. Yes, you may have to wear braces and you may have to wear special shoes or have items that help you function normally and I’m here to tell that’s okay! For those of you asking what the heck is Charcot Marie Tooth Disease? Let me fill you in.
Now don’t take my word for it that image came directly from https://www.cmtausa.org/understanding-cmt/what-is-cmt/ I would recommend anyone who has this disease or thinks that they may to visit that website. They have all kinds of information regarding CMT and resources that are available. Anyways, symptoms of CMT can range from mildly inconvenient to serve depending on the person and depending on the day or the weather. For me, I hurt everyday but most days I can manage just by focusing on my breathing and pushing through. Other days, I hurt so bad that just walking becomes a chore and my feet and toes hurt so bad I could just cry. I still get up and I still go to work and take care of my son, because what other choice do I have? CMTer’s hate the cold and hate the rain. My feet hurt so bad and I am exhausted anytime it rains. And you might as well forget me getting in to a cold pool or lake somewhere. I have family members that have had limbs amputated and had surgeries to help with this disease, I have been fortunate not to have to have that yet. I have considered the surgery just because my ankles are rolling more, and my toes are curling up and I’m walking on the outside of my foot really bad. But the surgery is a hard surgery not recognized by some doctors for CMT. I have had 4 family members have it, with great outcomes BUT, I would be out of work for 8 months and would be bedridden for a while, as they break the bones in your feet and place metal pins in your toes to straighten out the bones. With me working full time and having a toddler there is just no way in the world I could even think about doing that right now and that’s okay. I will just keep on keeping on.
Well now you know a little bit about CMT I hope to spread awareness to this disease, as most do not know what it is or what it’s about.