I'm sad. So sad. Lonely and scared.
Why so sad? Why so scared?
Because of my CMT, I have breathing problems. I have a trach and I'm on a ventilator. I cant do anything for myself. I need a lot maintenance. I think it might be too much for my family. They're starting to argue about who helped with what needs to be done. It hurts to see and be the cause.
I can understand that! I am developing breathing problems as well and though I am not ventilated yet, I sure worry about what my wife and (now 3 year old) daughter will have to deal with in the future…
But! I am not control of any of those things and so I must shed the worry. I’v always worried about burdening others but I also understand that my blood family choose to have me (and thus implicitly choose to have whatever I bring with me) and my chosen family choose to have me for better or worse. I certainly still feel guilty at times but I remember, it is not my fault, not my choosing. I can feel bad for the burden they have but I am not the cause - only the vehicle.
I’m sorry you’re sad, scared, and lonely and I’m sorry there’s nothing I can do to help you.
I can say that I understand your sentiment though, and for that you are not alone in your feelings.
I don't know if I can continue like this. I don't see a way out.I don't believe things will get better only worse. Most days I feel miserable. I thank you for your words. I'm trying to find a reason to continue. I'll grab anything. I just don't see it.
We're glad that you found this support group, and we hope that you will be glad as well. I was so sorry to read your sad post. I don't have CMT, but another condition which is painful and debilitating, and I can relate to the limitations that you talked about. The beauty of this community is that everyone here "gets it" and together, we can help pull each other through the rough spots. You seem to be able to post here, so that is one thing that you can do. If you can post, you can support other people, just as chad reached out to you.
Even though we cannot pop over to each other's places to help out in physical ways, this is a great place to reach out and support each other socially and emotionally. And by reaching out to others, we help ourselves as well.
Hang out with us here, Sapphire, use the chat room, post, share and offer some positive words to others. You will soon find out what a special place this is!
Seenie from Moderator Support
Sapphire, please tell us how you are today.
Seenie
I'm tired. Feeling like I'm stuck in a loop. Every day is the same. I don't enjoy the things I used to, like reading, movies and games. Everything is harder now. I can't move my hands, my legs or lift my arms. I can't speak.I have to concentrate on my breathing. It's so frustrating. Most everything I do is alone. My family is loving and supportive, but they're busy. I'm tired of being in a bubble watching people come and go. But I can't change anything. I'm trying. I'm trying so hard to be strong and content with the way things are . To think about the things I do have. But I feel lonely and hopeless.
Sapphire, you have trouble breathing and speaking, but it looks like you can keyboard quite well.
Solo_Sapphire ;
I’ve been absent from this group even though I moderate when we had the old site but I lost touch because I’m not very tech savvy. This site has overwhelmed me as for navigating. So, I’ve been silent for a while now and just now saw your post here.
I’ve made a resolution just this evening for the New Year to get back into supporting emotionally, the people who struggle. It is through encouraging, sharing and supporting that I have found connection and feel less disabled. Being another’s advocate can give you more value.
I read a real game changing book early in my diagnosis of CMT, it is also a movie! I recommend highly both the book and movie, titled “Tuesdays with Morrie”.
It changed my view of feeling my identity was just the things I do.(Or no longer can do) It is only a part of what makes us who we are, but you may not realize the people who help you are blessed by being able to help you. Sometimes it makes a huge change in others to be a caregiver, but they also can feel helpless and alone sometimes as well b/c they cannot fix things for you.
Communicating with them and them with you can make a difference in how you both view your situation. Read and share what you read with them or the movie you watch b/c they are able to do things, they may not have time to read or watch things. I have time to talk on the phone to encourage others, but people who are able to work or carry out chores cannot take that time. Expectations that they have that is required doesn’t give them that freedom. Look for what you can still do.
I determined when I found out CMT was not usually life threatening (I’d been told I had Lupus or MS and feared my young children would grow up with no mother), but life altering for sure, that CMT would stand for Can Manage This.
So, take each day as it comes and don’t look back with regrets. There is purpose in every life if you look to serve another in some way. Stay positive and you may be someone else’s strength at times.
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