What is Charcot-Marie-Tooth Disease
Charcot-Marie-Tooth disease, also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy, is a heterogeneous inherited disorder of nerves (neuropathy)...
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I give up
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I'm so beyond frustrated with my life. I just want to quit. I'm dealing with a lot of stuff and I don't have anyone to talk to about it. Nobody really understands. I don’t have anyone I can really talk to…well, let me clarify, nobody that I can completely trust with everything. I have a ton of friends and they’re great. We talk about practically everything and I know if I ever needed anything, I could go to them. But they just don’t understand everything and I don’t expect them to. Plus, they are busy with their lives.
I don't know if this group is the right place to post this rant or not. I don't have depression, but I feel like I don't want to keep fighting. I'm 25 and I have a very rare neuromuscular disease. Right now, I'm 3 days into a two week family vacation in Florida and all I want to do is cry. A little about my disease - I have VERY little use of my muscles. My disease affects most of my muscles except for the major ones (ie. heart). I can't move my arms or legs. I can't do anything by myself except use the computer (technology rocks!). I have a trach and vent because my weak diaphragm muscle made breathing very difficult. I'm tired of everything beings soooo difficult. I'm tired of depending on other people for everything. I have been so unhappy for the last year or so. I finished grad school last year and received my master's degree. I currently work part-time doing the same thing that I did during college. It is an incredibly boring job that pays minimum wage and offers zero mental stimulation. The fabulous economy hasn't had anything better to offer! Nobody wants to hire somebody who is severely physically disabled. I have help during the week (when I'm home). I don't have any help during the weekends or on weeknights. I have a limited number of assistance hours but I'm trying to get more (although my mom says I won't be approved for more). I require 2 assistants to go with me everywhere (one is trained specifically for my medical equipment). One is usually with me and the other is there when needed. I communicate primarily through my computer. My assistants can also read my lips once they have been with me for a while (the trach took away my ability to speak). • Most women my age live alone or with a roommate. I can’t because I don’t have the support. Most women my age can decide on a Saturday night that they want to go out and call up a bunch of friends to hit downtown. I can’t because I have to make plans at least a week in advance (usually longer) because of my support requirements. • You can’t do anything without someone knowing. All the things you want to do in private, you can’t. You can’t stay in the shower and just cry. You can’t do what everybody else is able to do alone. Even just stupid, simple stuff like reading a magazine, watching TV/movie, going somewhere…the little things people take for granted. • You work your as* off in school only to end up being forced to make VERY little money (compared to what somebody else with my education can make) and stuck in a town here I will most likely never be able to do what I want to do. I want to get an apartment. I want to continue having a life while on my own. I want to explore my options outside of my current location (if that is even possible). I want to be a NORMAL 25 year old woman as much as possible. I want to date. In college, there weren’t any guys that I was interested in and honestly dating wasn’t high on my priority list. The last two years of college were like a FWB era and I was completely uninterested in that. Now, I really want to date. I know that they say you have to love yourself before anyone else will. But I don't know if that will ever be the case with me. I'm very lovely and I just want to feel wanted. For some reason, I think a guy would help. I know that will be very difficult but I honestly hope there is a special guy out there for me…it would take a really special guy. I’ve always talked to friends about dating, relationships, sex and everything related to the subject. I’ve always been a person guys come to for advice about their situation(s). Several guys have actually told me they think of me as a sister. I can’t help but think “if we’re friends and you come to me with this stuff, why am I undatable?” But I keep telling myself – if the situation was reversed, a guy who couldn’t talk or physically do anything wouldn’t be at the top of my list either – so I can’t blame them. Maybe I’m better off just telling myself that aspect of life isn’t available to me…? Maybe I’m not going to be able to have that aspect of life… I started this year with a resolution that I have honestly tried to follow – PUT MYSELF OUT THERE MORE. Kind of hard to do just quite yet because I don’t have a social life, but I think that will change. All of my close friends have left. That was one of the benefits of going to grad school right after college … your close friends either move back home or to a new city but you immediately fill the void with new friends. It just really sucks when you finish grad school and then you lose your new friends. So, needless to say, I don’t have any friends here. I know several people that are still in the area but they aren’t the type of friends that I’d regularly hangout with. Some are from high school and we’ve just grown apart (you know, career path with high school diploma versus the college route). Two friends from college are still here, but they have careers and lives now. Two people from grad school are still in the area too. All in all, I guess I should be thankful. I’m just unhappy. I keep telling myself “once I find a job, I’ll make new friends, I’ll figure out a new work schedule for my aides/nurse so I can have a life on the weekends, I’ll have a career, I’ll be happy.” That hasn’t happened. I’m beginning to think that it won’t happen. My dad has noticed that I have been done and acknowledged that he knows I’m “unhappy” and that “everyone is unhappy at some point in their lives.” I just kept thinking that while that is probably true, most people have the ability to change whatever they don’t like about their life…I can’t…I’m stuck in a living hell. I told him that I wanted to be in Florida and he just said “well, unfortunately, you’re stuck here with your mother and I.” Back to this vacation from hell, I'm so tired of my parents. They need to get divorced! They argue constantly and I always get dragged into it. Why do I deserve that? My mom is all about passive aggression. She wants to feel like she is in control. My dad got a rollable chair for the shower here (the bathroom layout is horrible and it hurts his back to carry me in and out of the shower). Well, the first trial was yesterday and it was horrible. This morning was attempt #2 and I fell out of it and hurt my shoulder. She has been bugging the crap out of me today about going to get it checked out. I've kept saying no and trying to keep it positioned so that it doesn't hurt. In a control battle with my dad earlier, she threw my arm around and just said "you're going to have to deal with the pain for a few minutes." She is pissed at me for not going to the doctor. We got here Friday night and I'm ready to go home. Although a friend of mine is coming in a few days and I'm REALLY looking forward to seeing her. And every morning it is the same thing...why should I even bother? Posted on 08/30/09, 09:08 pm |
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Hi Jess, just joined this support group and the social worker in me wanted to reach out to you and encourage you to reach deep within and find th strength. Its sounds cliche', I know. I felt similiar way back when i was your age and I now know that when you find the inne strenghth all is possible. You are not alone. thank you for sharing your frustrations. renae 
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Jess, you can't choose most of what life gives you, but you do have a choice on what to do about it. You can choose to be miserable about it, or to make the best of it.
There is a reason you have been dealt this "card", obviously it was thought that you were strong and smart enough to take it. Because of your disease you are already stronger than most. You are different for a reason. You have been pushed by life to get strong and there is a why. I don't know the answer but you do. If you use the inner strength you have developed during the last 25 years, if you use your instinct, and if you keep your senses open you will understand the why and what to do with it. Perhaps you are not supposed to have the average life that you desire so much. Maybe your disease was needed to make you strong. Maybe that strength is to be given to others. I was once offered the best advice of my life and it changed it. Now I will give it to you because I have been told that what we don't give dies with us: Live every moment, make every choice, as if you had already lived that moment and you already knew the outcome.
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You are right to feel like just giving up that is most anyone's thought when faced with difficult things such as our desease. But God has never put someone through something without good reason and if you dig deep and I mean deep you can find what it is he has planned for you and there will be a sense of greatness when you accomplish it. It might be that you are supose to be a positive for a few that just might be in a worse situation It might be you are this way for your parents I don't know but God does and he wont's you to search for his plan. Nothing worth while in this world comes easy and To me the most valuable things I have were the hardest to aquire and so that is for you to if you think about it. you started this year out with a positive and from what I have read if I am right you haven't seen that through yet (YET) there is still time and when you accomplish that one make another and another and so on.. you are a help to others already from what I have read and that should be looked at as a possitive and you are educated that too is a positive too . So you may not be able to get around like others but you can still get around in way's other's can't or don't take the time to. I am too with CMT I use to remodel houses and the house is only as strong as the builder and your builder of you is God he built you and gave you the knowledge to learn and graduate college for a reason find that reason and you will find the strenght to go foward I strongly believe this. Plus whatch Extreme Home Makeovers and see if that is a team that can help you I think they can. would like to hear back from you if you don't think this is non-sense ok
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