Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 I guess my husband and I are a perfect match. I am the brains, he is the muscle. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Rob, I just recently got engaged after 17 years of being a single parent. My fiance is also trying to learn as much as possible about CMT. I am still working, but he would like me to stop working to help alleviate the stress and fatigue on my body. I still do the cooking and the laundry, because I have figured out a way to do laundry while sitting down. I fold and hang all the laundry and then he takes it and puts it away along with our children. I try to do whatever I can to help in the house, but he does the vacuuming, washing of floors and other activities that cause extreme fatigue. I told him I would do all the grocery shopping. I use the electric carts in the food store and I call him from my cell phone when I am on the way home so he can bring in the groceries. I have learned to do a lot of housework sitting down and crawling from place to place to avoid standing for long periods of time. I keep cleaning supplies in every room of the house! The hardest part for non-CMT people to understand is the fatigue of our bodies. I used to blame myself for being lazy when I needed to take naps. I now forgive myself and have explained to my family that when I get tired, I must lay down and stretch out my legs to re-juvenate my body. My fiance's energy level is much higher than mine. He likes to go,go, go all day long and does not lay down to rest until late at night. I have explained to him, that I need to stop doing all chores by 8:00 PM and just " chill out " He is starting to understand, but it is crucial for you and her to " listen " to her body. I too commend you for trying to learn all you can. It took me a long time to find someone who could look past the CMT and just see me for the fully functioning person that i am. I am so grateful to have found that special person, but I realize that we have a lot of work and learning to do to have a successful marriage! I do NOT let CMT rule by life, but I have learned to accomodate. Please feel free to email me directly with any questions or concerns you may have! Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Rob, First, welcome to you. This group is by far the best help I have ever known for CMT. Gretchen's committment and dedication to providing information, answering questions, posting research and disability related news is stellar. You are here with " the winners " - what I call people who have positive attitudes while living with CMT challenges. As for marriage, in my marriage, I was the one with CMT. (Type X) My wife died after about 11 years of marriage from ovarian cancer, leaving me to raise our twin daughters alone. Talk about challenges! I'm happy to say my daughters are two beautiful young ladies now, both pursuing advanced degrees. They are both still asymtomatic for CMT - meaning they tested positive for Type X, but have no symptoms. OK, now, back to marriage. My wife and I believed that our marriage needed to be a covenant relationship " I will be here for you, you will be here for me - no matter what " . We also believed that each of us would be 100% helpful and accountable. She knew CMT was unpredictable, that there is no cure, that I might require " help " . Fortunately, I feel because I had a childhood diagnosis, I had learned many ways of coping and handling my CMT before we met. As for dividing up chores - forget it. As for each person doing their part, forget it. Get ready to give 100% and understand that while your bride to be may not look like she's giving her 100%, she is doing her best. If you are not ready to give 100% on a daily basis, or possibly more, put off the wedding until you are. CMT is uncertain, unpredictable and can be extremely frustrating. You will have wonderful times in your marriage, but, sorry fella, don't even think about getting slack time. Marriage to someone with CMT requires a very emotionally strong and physically strong person, one who does not grumble or complain, one who LOVES always. Remember, LOVE IS ACTION. The issue of having children who may inherit the CMT gene is a big one. This too needs discussion, and research on both your parts. I think Gretchen still has the information on Pre-Implantation Genetic Diagnosis in our Files, plus Pre-Natal testing info. Ask yourself this: Are you prepared to ALSO care for a child/children who may have CMT? Just so you know, I'm in my 50's now, CMT has had a mild progression in me, I work in Business, Design and Real Estate, and thoroughly enjjoy life. I have not remarried, but have many close friends and my daughters still come by to " check " on me. I work out at the gym weight training and enjoy friendly beach volleyball on weekends. Marriage requires much thought and preparation. Let your CMT friends help you with these issues. Perhaps your fiance might want to join and you could both learn and ask questions together. That would also create open dialogue between you. I guess what I am saying in a polite way is " cowboy up " , be a man for her, emotionally and physically strong. Even though I am the one with CMT, I took care of my wife while she was dying. It was the most rewarding experience, although extremely difficult, challenging, and stressful. I'm sure Gretchen will tell you that funds from disability can be meager, so, yes, there are CMT financial issues too: doctors, AFOs, maybe surgery, adaptive equipment, if needed, etc. And the same would apply for CMT offspring you might have. Quote Link to comment Share on other sites More sharing options...
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