It's been a long while since I wrote on my blog, but to say the last 6 months has been a roller coaster is an understatement. I got off my meds and got pregnant but sadly miscarried around Christmas time, we took a family trip where my sister got engaged and I struggled with traveling with a scooter for the first time, we gutted our kitchen and lived through the renovation. During the renovation, I decided to go back on all my meds because I was sick and tired of being sick and tired.
Living with chronic pain is hard on your body and on you emotionally. There are days when you wish you could just hit the pause button and walk a mile in someone else's shoes for a change. As you struggle with all the intricacies that come with it, you must also deal with spoken and unspoken prejudice about your condition. Do you really feel as bad as you claim? What about that day when you were more active and in a better mood? Are you maybe just lazy? Is your life really as difficult as you claim because it doesn't seem like it? Why are you taking a handicapped parking spot from someone who really needs it? And these are just a few...
I've just read a really interesting article that describes these feelings to a T...read it here: A Pained Life: Pain Patients Need to be Heard
Unfortunately, CMT falls under the umbrella of the diseases rarely heard about. That's why spreading the word is so important and why we strive to make more and more people aware. Much has been done in the last few years and hopefully this will be a non-issue at some point in my lifetime.
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My life with CMT and trying to deal with constant chronic pain with a positive attitude...
Thursday, April 25, 2013
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About Me
- Michele
- CT, United States
- I'm a girl with hopes and dreams who has Charcot-Marie-Tooth (I know! You've never heard of it!). In this blog, I talk about my journey with this invisible disease and 2 reconstructive foot surgeries (and a 3rd minor surgery) I've gone through in the last 18 months. And I try to do it all with a positive attitude and a smile on my face :)
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1 comments:
I completely understand how you are feeling! I struggle with the doubt and constant questions, too. Maybe if I exercised more, or rested more, or ate all organic? We take so much responsibility for our pain. And since no one can really 'see' our challenges (most of the time), we feel even more doubt about whether the pain is real. I do, anyway :) For me, the emotional toll and exhaustion is huge. I hope we both get easier days soon!
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