I live on a Military base. I'm going through this a lone currently. My support system and amazing girlfriend are back home (6 1/2 hours away). I'm having a really tough time going through this alone. The doctors have only read about CMT in there books. A case has never come through, well through this base at least. I'm frustrated, exhausted and in so much pain. I want to be happy. I just can't be right now. I'd quite appreciate someone help me by talking me through what they've gone through.
Really a tough gig we have, especially without support… I live alone. I am traveling right now, will be home in a couple of days. I would love to be part of your support- we can’t do this alone. What part of the country are you located and how long have you known you’ve had CMT?
I will keep you in my prayers - to find a couple of local people, that will also be there for you.
Renee
Subvet;
Sorry to hear you are having a tough time. We all experience and go through stages of acceptance, denial and pain ,more some times than other times. Support is a very important thing to have,to get through these times. Giving support and friendship can also help you. Reaching out to others can be a healing thing as well. Sometimes we feel more important to others when we realize they have problems and sometimes worse off than we are. When we are focused on our own it can be overwhelming but helping others even just by being a friend and giving a shoulder or a listening ear can make huge difference in our prospective of our troubles. Sharing is a key factor as well as trying to find positives.
The first thing is to assess your problems and then set a plan to cope with it better. The things you are unable to do, either find a new way to do them or find ways to cope without those and replace with something else. I have learned rather than focus on what I CANNOT do any longer or have difficulty with, to work out a way to be able to do them in a different way or to find new things to spend time focusing on CAN instead of CANNOT!
We all have value ,but so much of time we don't broaden our view of ourselves and stay in a comfort zone of what we always have done. With my experience of CMT in the 18 yrs (I've known of it) I learned that I'm more than what I DO. And it has made me look for things I CAN do that I would never have done or even thought to do before b/c I was too busy doing what I'd always done.
I started a support group in my area (now supporting on line). I worked on Awareness Advocacy. I started singing in public and found I have a gift for inspiring others through music. Since that time ,was received so positively, I've mailed out music CD's to people all over the world. A music ministry of sorts. Sing in nursing homes and do specials for various churches.
I now take care of a granddaughter on a daily basis to help my daughter who at present has to work a job. I did volunteer work for schools and went to listen to children read or read to them. I can go on and on but the important point is b/c you CANNOT change CMT you have to find ways to change things you used to do and change your responses to it! I HAVE CMT and will not let it GET me! My motto and acronym for CMT is Can Manage This!
Tell us more about you and what you do on the Military base and how long you have dealt with CMT. Did you know about it when you went into the military? We are NOT alone and you'll find many will share their coping measures and hopefully you will find what works for you.
your friend; CM
Hi there. I spent 4 years in the Navy and my husband 10. He is currently in the Army and gone. He got out and went back in to get better Medical insurance for taking care of me. I want you to know that I feel what you’ve said; so much so that I don’t know what to say. Gotta think about it for a bit. I do know one thing though… you will be okay.
I promise…
Hi Renee,
Thank you. I'm in New England. I feel like each week I've finally made it past the acceptance phase. Only to find out within the next day or two, I absolutely have not!
Renee said:
Really a tough gig we have, especially without support... I live alone. I am traveling right now, will be home in a couple of days. I would love to be part of your support- we can't do this alone. What part of the country are you located and how long have you known you've had CMT?
I will keep you in my prayers - to find a couple of local people, that will also be there for you.
Renee
Hi I have only been dealing here with this for a little over a year. The discussions on this site have helped me a lot. I read a posting and think, yes that just happened or wow that's right that's what I do. I can relate so well with it all. The doctors I have are great but, have never had someone like me. I get a great deal of information from this site. The best thing I can tell you is you are not going thru this alone there are a lot of us. Keep talking, asking questions and go from there. Hugs and Blessings to you. Veronica
Thank you Kathy Jo
It's definitely hard to go through. My plan was to be in the Navy for 25 years and retire as a master chief. That clearly is not going to happen now.Thank you for your thoughts!
Kathy Jo said:
Hi there. I spent 4 years in the Navy and my husband 10. He is currently in the Army and gone. He got out and went back in to get better Medical insurance for taking care of me. I want you to know that I feel what you've said; so much so that I don't know what to say. Gotta think about it for a bit. I do know one thing though... you will be okay.
I promise...
Veronica,
I'll absolutely look into more of the discussions on here. The doctors I have aren't quite so in-tuned. So I'm going to have to figure that part out on my own. I just want to be home with my family. My legs have started to "buckle" a bit more as I walk. Thank you for everything you said!
Veronica said:
Hi I have only been dealing here with this for a little over a year. The discussions on this site have helped me a lot. I read a posting and think, yes that just happened or wow that's right that's what I do. I can relate so well with it all. The doctors I have are great but, have never had someone like me. I get a great deal of information from this site. The best thing I can tell you is you are not going thru this alone there are a lot of us. Keep talking, asking questions and go from there. Hugs and Blessings to you. Veronica
Do you still need someone to talk to?