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I've become a wheelchair user

Deborah67Deborah67 Member Posts: 1 Listener
edited March 2018 in Disabled people
Hello everyone, I'm Debbie and I have just been told yesterday that I will never walk again.  I'm 51 yrs old and suffer from severe rheumatoid arthritis, which has wheelchair bound me for the last two yrs.  I thought that my situation would be until I could have the knee replacements, but I have now been told that due to my long time in the chair it has affected my tendons and even if I had the operation, it was going to make my condition worse and I would never be able to straighten my legs to walk. In my mind being in the wheelchair  was only a temporary  thing and was positive about the future when I was able to walk again and go back to living a normal life. The realisation now is to accept I will never get back to a normal ,independent life and have to rely on people to take care of me and also suffer the unbearable pain for the rest of my life.                      
During the past two years of being in the wheelchair, my whole life has had to change.  I need care with everything having to lose my dignity.  I've also become aware of the way people look at me and behave towards me.  I don't venture out much because I find it so restrictive to where I can go, as there is very few places adapted for my chair, and never with adequate facilities. Now I need some help and advice as now I'm at the point of giving up.  I would appreciate if anyone who has been in a similar situation and is recently disabled give me some advice in how to move on and accept the  situation.  I have so much respect for disabled people and their way to adapt and function in a very challenging environment. I hope I can find that courage to help me deal with my situation.  Thankyou for taking the time to read my story.  Debbie 

Replies

  • duckett123duckett123 Member Posts: 81 Courageous
    hi Debbie I'm not in your situation but don't give up we are all here to help if you feel down just talk to us all on the site and we will help you.
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Debbie and welcome

    We have many members that have been in your situation. If you do a search at the top for wheelchair users you should find some helpful posts.
    I am sure that the community you have now joined will help and support you

    CR
    Be all you can be, make  every day count. Namaste
  • mossycowmossycow Member Posts: 495 Pioneering
    Hi there, obviously everyone is different and I wouldn't dream of saying I know exactly how you feel... 

    But I do recognise your situation. I had problems with pain and my arms... And felt like I could just about cope.... But then condition now effects my neck and back and though I'm lucky, I can stand for about 15 to 20 seconds... Otherwise, yeah, I'll never walk again either... 

    It's like a death. 
    And there's lots to grieve over as everything has now changed. 

    When someone first said that to me I didn't really believe or feel I had the right to grieve (partly as a friend lost her husband the night before) but looking back now she was exactly right to say that. 

    It started with my back about 5 years ago and I've been  in a wheelchair about 4 years now. I've sobbed and cried at my situation. I lost my ability to work where I'd trained for years to be...  How would I parent? Go out?  Have sex? What happens if my husband can't or won't look after me.... Everything was buzzing round me and it was so overwhelming.

    But it really really does get better. 

    Yes, ypur body won't get better but you WILL get better and coping and dealing with stuff. 

    At first you do everything for the first time. I remember the first time I met my family for a meal in the wheelchair... I phoned them 3 times... Was so nervous... But then the second time gets easier. . U till years later it is easy. 

    May I ask, do you have the very best wheelchair possible? This takes a while to get right. I was borrowing one from the red Cross then when I found it was permanent I went through the NHS wheelchair clinic. It was a wait but so worth while! I now have a manual wheelchair that is lighter, fits to my measurements which all adds up to me being able to get further and do more. Even on my worst day it's good to be able to turn myself round to look at stuff in shops when my lovely hubby has popped me somewhere facing the wrong way. 

    After 3 years I really improved. The first time in a wheelchair I managed two pushes.... I now can get further. Every metre helps! 

    18 months ago I was (miraculously) awarded the upper PIP. Now this might be a positive of having ypur newer diagnosis. You may qualify, if you don't already, for high mobility on PIP which means you can join the motobility scheme.. . That's another thread probably but short story is I now have an electric powered wheelchair.

    It's taken a while to get things in place. Like we had our bathroom converted this summer and a stair lift so bow I know I can stay in my own home. 

    I have support from young carers and other stuff, here on scope. If you haven't already, may I suggest looking on here:

    https://www.scope.org.uk/support

    Especially the 'new to being disabled' cos I don't know about you but often finding out info is so time consuming, it never seems forthcoming so Scope wrote this to help get the basics going. E. G. Like a radar key for toilets, blue badge etc that make life less tricky. 

    In terms of going out, do let me encourage you. If getting out and about and seeing people makes you happy.  .. Work on it, it WILL get easier. And friends and family will get used to it too.  I decoded that times I had to rest.. . Which is frustrating as I'm quite a hyper person..  Is time for research and support.  Often again, info isn't straight forward but often there. Like for example, there's a pub nearby that has a folk club... I wrote it off as there are steps But! I was brave and called them. They have a ramp, and they have a different entrance.. So we're going to try it next week. 

    Do you have a partner or someone who can push? Or a good friend or family member? I didn't like asking people... But.... People quite enjoy pushing. . Bit of a novelty I think for them! 

    Do you have friends online  say Facebook email etc? I know every newspaper article is about being online too much... But... I have found it a social life saver. Last two weeks I was bed ridden and wow, just being able to chat with friends... See their grandchildren, see their updates and make plans... Also joining interest groups is fab like I can can chat and find out stuff about cooking, fish, music, films, Scope etc cool stuff keep up with the world even when my body doesn't let me get into it. 

    But mainly @Deborah67, please let me tell that you are just at the beginning of your new life. It will get better and easier as you triumph over each challenge. The second, third, fourth time you cope with something will get easier and easier. I could imagine how it would when I found out..... And now I know it does after about 4 years in a wheelchair. It changed life massively, in a way I didn't expect or want but you can have a great life even on wheels.

    Do reach out for support. You are bauble to society and society owes you this support. Do claim benefits and help. E. G. You can ask a friend to take you to the cinema /theatre and in return you both only pay half price! As carers get in freeeeeeeeee

    Sorry for long post, but hope you can hear the hope and truthfulness of what I say

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • mossycowmossycow Member Posts: 495 Pioneering
    And do keep taking to gp about pain. I found a referral to the pain clinic helped a lot. Not just with medication but with many facets of living with it. I totally scoffed at 'therapy' but seeing Anne an hour a week for 10 weeks changed everything. 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • mossycowmossycow Member Posts: 495 Pioneering
    Hope that didn't sound too preachy 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @Deborah67, just wanted to add my hello and say welcome to the community. I'm so sorry to hear about your situation, but it's great to have you here and I really hope you find comfort from being a part of our forum and talking to our lovely members. If there's anything we can assist you with going forwards, please do let us know! 
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