tag:blogger.com,1999:blog-1616038526182048050.post6287773618070873935..comments2024-03-10T03:36:27.211-07:00Comments on Run 4 CMT: On Being a FraudRun4CMThttp://www.blogger.com/profile/15313510162686425015noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-1616038526182048050.post-64124115813972377932014-01-25T10:28:25.338-08:002014-01-25T10:28:25.338-08:00I carry the burden of having a disease that is oft...I carry the burden of having a disease that is often not visible to others. I look normal. I recently ran a marathon. But I don't walk normal and am often made fun of for my loud walk. My co-workers can hear me coming a mile away they say, but it's my floppy feet a result of the degeneration of my disease. I constantly drop things. It is frustrating. Do you know how many times I drop my keys on the way to my car in the morning? At least three times. I may look normal but behind that mask is a girl that is internally paralyzed with fear that she will trip while walking or embarrass herself by dropping important items in front of people. I love when I'm standing and talking to someone and just lose my balance. That is laughable...sometimes. I love sitting at my desk and suddenly overtaken with restless legs. That's always fun jumping to my feet and moving my legs around to get the painful jolts of what feels like electricity to stop shooting through them. I run, because I can. I look normal albeit extremely loud because of my floppy feet. I've had two doctor's now tell me to stop running. The second doctor and I had a wonderful heart to heart. He didn't actually tell me to stop but he gave a new and different perspective. He encouraged me to keep exercising but to consider the true benefits that running had for me. He pointed out that the risks almost didn't outweigh the benefit and he asked me to consider the possibility that the wear and tear of running might actually be contributing to a more rapid progression of my CMT. He never said stop running but felt there were other more beneficial exercises because let's face it, running is brutal on the joints and body. It's pounding. I may look normal, but I'm not. I tire easily, I trip, I have balance issues, I harbor fear of falling when I am walking, and I drop things. I've broken many things and it's especially hurtful when it's something of value or special meaning. Josh obviously has a harder reality than I do, but it's my journey, my struggle and as normal as I look I struggle everyday and I know that my future reality will be one of continued struggle and challenges. I'm still happy though for all that I'm able to do. I know it's all part of a bigger plan so I run and will keep running until it doesn't look normal... Anonymoushttps://www.blogger.com/profile/12374585817035783084noreply@blogger.comtag:blogger.com,1999:blog-1616038526182048050.post-36027973893870252612014-01-24T17:58:43.593-08:002014-01-24T17:58:43.593-08:00how very sad that you were questioned as to your d...how very sad that you were questioned as to your degree of CMT. It is wonderful that you can and do run even with CMT. Most of us can not. I was a ride a day bicycle rider - it was my joy. Oh how I wish I could still ride. But just cant. <br />Enjoy your running for as long as you can. Hopefuly CMT wont take that away from you. I think that the young man who was so upset with you was very resentful that he could not run or do other things that bring him joy. And lashing out somehow makes him feel better. So sad. I am sorry that you had to get the brunt of his anger.<br />You just go on running and give encouragment to lots of us who also have CMT.<br />Thank youAnonymoushttps://www.blogger.com/profile/14234851333068126966noreply@blogger.com