Handicapped
I am handicapped- there I said it! It is a reality I must come to terms with. I believe it will it make my life easier. I stopped hiding my CMT when I quit my last job and met Bernadette online and saw her videos. But not hiding it and identifying yourself as handicapped are two different things. I am scheduled for physical therapy next week and will get some advice of which device would help me to walk on sand and also identify me as handicapped. I am over fifty and it is much easier to address this issue now. I have lost most of my vanity and youthful exuberance and wearing AFO's for the last few years with shorts and skirts has also helped. The problem is with weak arms and injured right elbow and wrist I am not sure what suggestions they will have. I am open to whatever works at this point.
When you are chronically ill there are always obstacles to overcome and levels of physical challenges to deal with. For me the last several years have been a steady decline possibly due in part to taking Cipro for UTI's and sinus infections. As it turns out Cipro has a class action lawsuit against it. Google it and find the issues. The main one for me is that it can cause peripheral nerve damage which the CMT already does and it did not need any help! I had been taking Cipro 4-5 times a year for the past 6 years before I learned about this. I can blame my doctors but I won't. I can blame the manufacturer but I don't. I am a little miffed at the scientists who were sitting on this information hoping it would not be an issue. The last time I took it was August of last year. I am hoping I will not see any further decline now that I am not adding to it by taking an antibiotic. Before this my CMT advancement was so slight I could hardily notice.
With CMT one of the problems is that there are muscles that don't get get used because the nerves can not communicate with them. So I need to be structured on my end doing stretching and swimming, a little lite exercising. I have had increasing times of fatigue probably from fibromyalgia, so it is easy to nest in my recliner and put off the things I need to do. During these times of fatigue the days can melt together and before I know it the week has gone by. Balance is what it is all about constantly trying to find the balance. Knowing when to push myself and when to hold back is constant.
I also need to have purpose and volunteering one afternoon at the Whale Sanctuary has been great. I am on my feet a lot talking to people about whales which I love to do and I just need to allow a day to recover. As the season winds down I am told so will the interest and there will be fewer visitors. After failing at some previous attempts to volunteer here it is important to me that I succeed in this.
I have learned so much from other bloggers on these issues and appreciate their work. I encourage you to visit them.Here is on of my favorites Seeking the Still. We gain wisdom by seeing the world through other people's eyes. We also increase our compassion and compassion helps us to focus on others instead of ourselves which helps the depression we can get. Your symptoms are valid and important but when you obsess about them your world shrinks. Keep it large and full of people who you can pray for and write a note of encouragement to. People who are just being diagnosed and are on a steep learning curve that you can help. We are here for relationship, to each other and to God. Listen,learn teach. This week I was gifted a song which touched my heart in ways I can not explain and it came from the blog above Keep making me.
Even when I am nested in my recliner I spend a lot of time in prayer. Prayer encourages me on a day when I have otherwise been unproductive at least I have taken time for prayer.
Lord today is a good day for you have given it to me. Help me to use it for your glory and for others who need you. I do so love you Jesus and want you to be the center of my life instead of me. Help me to replace myself with your word and promises. You are such a gift in my life. Amen.
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When you are chronically ill there are always obstacles to overcome and levels of physical challenges to deal with. For me the last several years have been a steady decline possibly due in part to taking Cipro for UTI's and sinus infections. As it turns out Cipro has a class action lawsuit against it. Google it and find the issues. The main one for me is that it can cause peripheral nerve damage which the CMT already does and it did not need any help! I had been taking Cipro 4-5 times a year for the past 6 years before I learned about this. I can blame my doctors but I won't. I can blame the manufacturer but I don't. I am a little miffed at the scientists who were sitting on this information hoping it would not be an issue. The last time I took it was August of last year. I am hoping I will not see any further decline now that I am not adding to it by taking an antibiotic. Before this my CMT advancement was so slight I could hardily notice.
With CMT one of the problems is that there are muscles that don't get get used because the nerves can not communicate with them. So I need to be structured on my end doing stretching and swimming, a little lite exercising. I have had increasing times of fatigue probably from fibromyalgia, so it is easy to nest in my recliner and put off the things I need to do. During these times of fatigue the days can melt together and before I know it the week has gone by. Balance is what it is all about constantly trying to find the balance. Knowing when to push myself and when to hold back is constant.
I also need to have purpose and volunteering one afternoon at the Whale Sanctuary has been great. I am on my feet a lot talking to people about whales which I love to do and I just need to allow a day to recover. As the season winds down I am told so will the interest and there will be fewer visitors. After failing at some previous attempts to volunteer here it is important to me that I succeed in this.
I have learned so much from other bloggers on these issues and appreciate their work. I encourage you to visit them.Here is on of my favorites Seeking the Still. We gain wisdom by seeing the world through other people's eyes. We also increase our compassion and compassion helps us to focus on others instead of ourselves which helps the depression we can get. Your symptoms are valid and important but when you obsess about them your world shrinks. Keep it large and full of people who you can pray for and write a note of encouragement to. People who are just being diagnosed and are on a steep learning curve that you can help. We are here for relationship, to each other and to God. Listen,learn teach. This week I was gifted a song which touched my heart in ways I can not explain and it came from the blog above Keep making me.
Even when I am nested in my recliner I spend a lot of time in prayer. Prayer encourages me on a day when I have otherwise been unproductive at least I have taken time for prayer.
Lord today is a good day for you have given it to me. Help me to use it for your glory and for others who need you. I do so love you Jesus and want you to be the center of my life instead of me. Help me to replace myself with your word and promises. You are such a gift in my life. Amen.
I am grateful to read your blog and learn about another person (outside of my family) with CMT. Trying to find balance is hard for most everyone, but it can be especially difficult for those of us made unbalanced by CMT. I wish you luck knowing when to rest and when to push onward. I often find myself overdoing it and then losing days to exhaustion.
ReplyDeleteI've just started blogging about my experiences traveling with CMT. I'd love it if you checked out my writing: http://globestumbling.com/2015/09/14/hello-world/
Wow! Thanks for reading! I have kind of been on a break from writing but have felt God nudging me. Thank you so much for commenting.Mauigirl
ReplyDeleteVery inspiring. I've had two corrective surgeries on my feet 2 years ago and I recently found out I have CMT (I just always thought I had wierd feet, family never told me). I've been scouring the internet for stories like yours ever since.
ReplyDeleteThank God my symptoms are generally mild compared to others but I still struggle with balance at times despite the surgeries (which straightened my slightly inverted feet and the toes). I've always felt the need to hide my condition and live as if it didn't exist which only broke me when I had to face my limitations. It's hard to accept that you have a disability when you've been physically active for most of your life. I'm a 19 year old guy who used to play basically every sport and now I have to channel all that energy into college books because I know my body just can't do it anymore.
You're pretty brave and I thank you for your blog posts and others like it. God bless.
You would probably like the documentary Bernadette about a truly brave friend of mine Bernadette Scarduzio.She has given me so much strength. Always remember CMT affects vary and can be different depending on the sub type.Also there is a great fb page CMTUS. God bless!
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