Tinkerbelle
member
Reged: 16/08/2008
Posts: 121
Loc: Kent
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How do i cope. Aged 64 and now totally bedbound. Any suggestions thank you. Tulip 
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Tinkerbelle
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Lillie
member
Reged: 04/06/2008
Posts: 1336
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Hello Janet
I am so sorry to learn that you have this and that you are now totally bedbound. Have you been bedbound for very long ? I do not personally know much about this illness, but would an operation be possible to help make it more bearable have you been told ? Also has physiotherapy been offered to you, as that could help you ? The key thing here is to have emotional support, do you have good friends/family that can supportive to you at this time in need ? I really hope so Janet.
Take care
Sue x
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Tinkerbelle
member
Reged: 16/08/2008
Posts: 121
Loc: Kent
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Dear Sue thank you for your reply i have been in a wheelchair for over 40 years and have had two spinal ops with metalrods down my back and 9 other major ops the doctors can do no more for me i have good family support i just feel like a burden to them i use to work and then volunteering i just get down not being active i try to keep cheerful to them but deep down i am crying in my heart. Its nice of you to reply.
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Tinkerbelle
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Arty
member
Reged: 12/03/2008
Posts: 98
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I'm so sorry to hear this Janet. I find it hard, I naively thought that only those in hospital and the gravely ill were ridden nowadays.Is there not some super duper kind of wheelchair that would help you? Sorry for asking such a stupid question! I suppose if there was one then maybe you would have got it.
I was at school with a girl who had spina bifida and i remember how she struggled on crutches for years even though a wheelchair would have been easier for her.She quite rightly wasnt willing to give up her mobility until she had too. I saw her recently , she was out having lunch with friends, in a wheelchair but still as perky as ever.
J.
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Snowy1066
member
Reged: 08/07/2008
Posts: 3070
Loc: Southeast
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Dear Janet, how awful for you, I am so so v. sorry. It is very hard to imagine how it must be for you. I have a nephew who is 30 who has spina bifada and he is bedbound for much of the time, and gets very low and had to have both his legs amputated last year, which was very traumatic for my sister and her family.
I am so glad you are on the forum, because if anything can lift your spirits this can, have a look at some of Mangetouts posts, if you are not easily offended that is, she always makes us laugh!
Will be thinking of you and please let us know how you are getting on. Big Hug Snowy x
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issi
member
Reged: 30/09/2007
Posts: 3011
Loc: Surrey
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Hi Janet. Snowy is right. Talk to us on the forum and have a few laughs. By the way, who, or what, is Tulip????
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marymary
member
Reged: 16/05/2007
Posts: 492
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Hi Janet
The Internet is such a wonderful invention and it's brilliant that there are forums like this that can be accessed from our own homes. We're here to talk to you, or listen, whenever you want - just join in and you'll soon make friends.
Are you based in the UK?
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OzzieKez
member
Reged: 21/06/2008
Posts: 1902
Loc: Queensland, Australia
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Hi Janet,
The girls are right. The forum is a great way to spend time. In no time at all you will find yourself engrossed in all sorts of issues........Look forward to seeing you post!
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Happywanderer
member
Reged: 24/10/2007
Posts: 245
Loc: UK
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Hi & welcome to the forum Janet, its fantastic that you've joined us. 
Thank goodness for the internet as its a ticket to a much wider world & a great way to socialize. So keep posting, you must have a wealth of life experience to share being 64 years young.
I have a girlfriend who has a 14 year old daughter, Grace who has spina bifida and she also has had several operations already. She was able to walk using sticks up until 2 years ago. Then she had a radical operation where they completely cut various bones in her legs & reset them - hoping it would straighten things out a bit & keep her mobile longer. Unfortunately many complications have since followed & she is now wheelchair bound. She keeps mobile by swimming which she loves.
I'm no expert but was wondering is it possible for you to have hydrotherapy?
It must be hard when you feel you're a burden to friends & family but please don't, I'm sure they love you unconditionally & are more than happy to do anything for you.
Laughter is a good medicine & there's quite often a lot of that here on this forum! 
Take care
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ParmaViolet
member
Reged: 25/03/2008
Posts: 94
Loc: West Wales
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Hello Janet, it's nice to meet you. No wonder you feel down after a busy life, but as the others said, the forum is a good place to start to make new friends - worldwide.
Is there any chance you can be offered respite breaks to get away from the house and family for a change of scene?
Best wishes,Anna
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lucii
member
Reged: 30/03/2008
Posts: 125
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Hallo Janet. I understand you are not looking for sympathy but I do feel for you. This forum is a great way to stay in touch with others and it certainly makes you think.
L
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Tinkerbelle
member
Reged: 16/08/2008
Posts: 121
Loc: Kent
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Hello to you all thank you all for your replies i am down with the flu at the moment and will be intouch soon Janet. I am new to the internet so bare with me while i am learning.
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Tinkerbelle
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issi
member
Reged: 30/09/2007
Posts: 3011
Loc: Surrey
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Get well soon Janet. x
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Happywanderer
member
Reged: 24/10/2007
Posts: 245
Loc: UK
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Wishing you a super speedy recovery too. x
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ejane
member
Reged: 30/01/2008
Posts: 390
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Janet - have only just found your posting and wanted to say 'Hi'. Sorry you are feeling rubbish at the moment. When your flu passes maybe we can all get to know you a bit more.
Is it recent that you have become confined to your bed? As the other ladies say-this is a cool forum and I have found the ladies to be responsive, imformed, supportive and sometimes completely NUTS...A really healthy combination I think
Looking forward to speaking to you some more..
Get well soon
ejanexx
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Sunbeam
member
Reged: 09/05/2008
Posts: 1857
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I'm glad you've joined us Janet, I'm sorry you're feeling grotty at the moment, flu has obviously been the final straw for you. The forum is a great place to be and I hope just the place for you. You can have company at any time of day there is always someone to chat to, we're ready for a laugh but equally we're ready to be there to sympathise if needed and always to support, I look forward to chatting with you, get well soon.
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