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Hi, my name is Debbie1968!

I am new to here and have been disabled fairly recently too. I am trying to get to terms with things but struggle from time to time.

Replies

  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Hi Debbie,
    Although I was born with Spina Bifida it’s only recently I am losing the the use of my legs. I also have been struggling. Tell me a bit about why this is happening with you? How old are you Debbie?
  • Debbie1968Debbie1968 Member Posts: 5 Listener
    Hi Rifi67,
    I recently underwent neuro surgery to supposedly release trapped nerves which was causing my lefr hand, arm and shoulder to give excruciating pain.
    Unfortunately something went wrong during surgery, leavimg me, at the time completely paralysed down the left side 
    With the help of physio and a 6 week stay in hospital I can walk again, but have not, and am unlikely to, recovered any sensation on my left.
    When I walk I cannot feel the ground and when I touch, grab or hold anything its only my seeing the item that I am awzre of they being in my hand. I have to be very careful with things such as hot water so I am learning.
    Financially this has hit me hard I just feel so cross

  • Rifi7Rifi7 Member Posts: 188 Pioneering
    This was the same thing that happened with me, but the surgery was in my spine. It left me paralysed and unable to walk to. The surgery was in 2006 but I taught myself to walk and in time I slowly got sensation in my legs but not 100%. Since then I noticed over time I started to loose the sensation in my legs and my consultant then told me that they found two cysts pressing on nerves in spine. They have estimated that within 3months to 3years that I will be fully wheelchair bound, that’s was last February I was told this news. I am no longer driving and can only leave my house in wheelchair or mobility scooter. I am trying to walk as much as I can indoors and stay as independent as I can.  I have come off most of pain medication, but I don’t advise for anyone to do this without consulting your doctor. I now still take my pain medication but a minimal amount and most have been taking CBD oil that’s been really helping. 
    Debbie I know how scary this can be and all you can think about is what you can’t do. It can consume you and I know this first hand. I was in a very bad place, suicidal and suffering several panic attacks daily, but I knew if I didn’t change my mindset I wouldn’t be here to see a Christmas. I now meditate, eat healthy and take vitamins. I try to do things for myself, no matter how hard it is or no matter how long it takes to do it. You  need to try to think what you can do and think about the improvements you make on a daily basis. Be kind to yourself and ask for support should you need it. Do you have family Debbie?
  • Debbie1968Debbie1968 Member Posts: 5 Listener
    Oh my I am sorry you have endured so much and am inspired by all that you have and continue to achieve.

    Yes I have a husband and grown up son, age 28 who has a fiancee and they have my beautiful 18 month grandson.

    You do you have family? Whay plans do you have for Christmas? 
  • chiariedschiarieds Community champion Posts: 6,895 Disability Gamechanger
    Hi @Debbie1968 - Welcome to the community & thank you for sharing about yourself. It's great to see you chatting with @Rifi7 whom I've had the pleasure of talking with too. It helps to share about the struggles we face, I feel. At least you know there are other people with problems, & even if their difficulties are different, there always seems to be some aspects of it that we have in common.
    I have a genetic disorder which has affected my joints, but the worst problem I have is neuropathic pain. Having been a physio (a long time ago), I exercise daily, use relaxation exercises, visualisations & distraction. Like Rifi7 I also use CBD, which helps somewhat.
    I hope you & your family have a great Christmas. :)
  • Debbie1968Debbie1968 Member Posts: 5 Listener
    Hi Chiarieds thank you for the warm welcome.
    I wish you and your family seasons greetings and a blessed New Year ahead.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    A very warm welcome to the community @Debbie1968, it's great to have you here.. :)
    Community Partner
    Scope

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  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Hi Debbie,
    That’s good that you have family and a beautiful grandson.  I know how sometimes it can be hard to chat family but you can always come on this forum for support and advice. Chiarieds is a great source of knowledge. She found out tons of information for me and was of such great support when I was going through such a horrible time. 
    I don’t have a partner nor kids but I do come from a very large family of 3 brothers and three sisters. Unfortunately I lost my twin brother to cancer this July so won’t really be doing much for Christmas. My University friend has come down and I will be just spending at home with him and my dog.  
    I hope you have a great Christmas with your family.
    kind regards,
    Rita
  • Ami2301Ami2301 Community champion Posts: 7,123 Disability Gamechanger
    Welcome to the community @Debbie1968 :)
    Community Champion
    Disability Gamechanger - 2019
  • Debbie1968Debbie1968 Member Posts: 5 Listener
    Hi Ami nice to meet you
  • Ami2301Ami2301 Community champion Posts: 7,123 Disability Gamechanger
    How are you doing today @Debbie1968 :)
    Community Champion
    Disability Gamechanger - 2019
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