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#11 |
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Member
Join Date: May 2011
Posts: 55
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Guys,
Living alone is not a choice for me. My family is like super protective of me and they will never ever let me live alone. And the truth is, I am not physically strong enough to live on my own also. My health is like a roller coaster and my stamina is next to zero. So, living alone is not an option. |
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#12 | |
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Senior Member
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Quote:
We all ride this roller coaster, some are buckled in better. Saying NEVER is NEVER an option. Have you contacted your local ILC? Do you attend school? All caregivers, even moms, require respite. Oh and stop identifying yourself as a patient. You're a beautiful young woman first and always.
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Get involved in politics as if your life depended on it, because it does. -- Justin Dart I shall not tolerate ignorance or hate speech on this site. Last edited by Liz321; 07-17-2011 at 03:44 PM. |
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#13 |
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Senior Member
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I've witnessed this with a small percentage of SB kids as well. You CAN do it!
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I think over again my small adventures, My fears, Those small ones that seemed so big, For all the vital things I had to get and to reach; And yet there is only one great thing, The only thing, To live to see the great day that dawns And the light that fills the world. Anonymous (Inuit, 19th century) T-11 Flaccid Paraplegic due to TM July 1985 @ age 12 |
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#14 |
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Senior Member
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I don't know anybody with Spina Bifida who is living with their parents after they have been 20 years old. I don't know anybody with SCI either or CP. Sorry I am so blunt, but I think it is in your mind that you can't live alone.
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TH 12, 43 years post |
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#15 |
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Moderator
Join Date: Jul 2001
Location: USA
Posts: 41,320
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Not to be brutal, but someday your caregiver mother will die or be disabled herself, and not able to be your caregiver. What will you do then? It sounds like she is already on the verge (if not actually) in a serious state of mental and emotional disability, and should not be your caregiver.
I strongly urge you to get some counseling and help through your local ILC. Get some therapy, start exercising, and build up your strength. Make a plan to learn how to do your own care, or at least teach a non-family member caregiver to do it, and take actions to get yourself into your own home. (KLD) |
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#16 |
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Senior Member
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I have Spina Bifida T11/12 since i"m a guy cathing is a bit different but I'm totally independent, live on my own and only need help with heavy/bukier items. I agree with what KLD says, you need a rehab stint with a good ot to teach you life skills, that's what I did and how I learned when I was 20.
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#17 | |
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Senior Member
Join Date: Dec 2005
Posts: 25,832
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Quote:
Life, do you have full use of your arms? If so, don't fear! You are capable of doing much for yourself in your home. I think your mother has you imprisoned mentally to her control. As for finding a place to live, I side with you, I understand under financial constraints, there isn't much one can do. Hell! Veterans go homeless and we think crippled people somehow have a magic key? |
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#18 |
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Moderator
Join Date: Jan 2004
Location: east o the southern warren
Posts: 7,793
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hi life&roll,
im going to find you some video's that may inspire you to not be afraid to daydream about being more independent. I like the lady in the first one I am posting. as you can see she has limitations, but is adapting her home for her living needs. I will post more as I find them. http://www.youtube.com/watch?v=TsW0x...eature=related |
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#19 |
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Moderator
Join Date: Jan 2004
Location: east o the southern warren
Posts: 7,793
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#20 |
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Senior Member
Join Date: Nov 2009
Location: Galloway, Ohio
Posts: 328
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Life&Roll, As Sarah's mother and primary caregiver, it is difficult. I still work fulltime and spend the most of my at home time with Sarah. I HATE so much that my daughter has her injury and needs the help of others. I do not HATE this for me....I HATE it for her. Yes, my life has changed to, but having my daughter in my life is most important. When I start feeling sorry for myself....I put myself in Sarah's place...then I easily snap out of it. We have all had to make sacrifices around Sarah's life change, but nothing like she has gone through and/or will continue to go through for the rest of her life. Please do not think that you are truly a burden to your mother. You are important and should not feel like your life is not worth living. Your mom needs to reach out and talk with someone. If she feels like that walls are falling in on her, she needs to get her anger out. As a mother, I would have to say that her anger is not towards you, it is because she can not change what you are going through.
Just to share some positive things in our lives....we are buying a condo for Sarah. She will be moving in approx 2 weeks - thankfully just about 2 mnutes from our house. It is very scary thinking about all of these upcoming changes, but it is what Sarah wants and deserves. She will have caregivers 3 times a day going forward. But she will gain the independence that she deserves. My selfish side....is going to struggle because I am going to worry about others taking advantage of her kindness....and my head is telling me that she can do this. She will gain more from me not being there every day - the more I do for her, the less she tries. I love her with all of my heart and I would change places with her if I could, just know that your mother loves you. It is just a hard thing as a parent. Good luck to you and stay positive! |
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