Disabled people
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Want to give us your opinion? Complete our annual survey.

Struggling to come to terms with your disability

Halfpint1319Halfpint1319 Member Posts: 14 Listener
edited September 2018 in Disabled people
Hi hi my name is Pauline & 11yrs ago I got up to make a cup of tea burst a disc which caused sever nerve damage. I ended up walking with crutches which brought problems of their own but I carried on as best I could, 6 month ago things took another turn for the worse & I now using a wheelchair full time. I’m really struggling to come to terms with this as my house isn’t wheelchair accessible & I’m having to move. Is there anyone who has been threw something similar who can give me tips on how to get back to being me PLEASE pxx

Replies

  • Ami2301Ami2301 Community champion Posts: 7,324 Disability Gamechanger
    Hi @Halfpint1319
    Welcome to the community! I'm terribly sorry for what has happened. I too became wheelchair bound last year and I just could not accept it. I now have a mobility scooter which has given me independence and a confidence boost. Speak to you GP to see if you could be referred to a Occupational Therapist, they are brilliant and they help you to find alternative ways of making the most of what you can do :)
    Disability Gamechanger - 2019
  • Halfpint1319Halfpint1319 Member Posts: 14 Listener
    Thanks @Ami2301 I’ve had an OT assessment & the only thing I should do is move as with all the remodelling that needs to be done is too expensive for the Housing Association plus the access to my home from the street isn’t suitable either. I have lost most of my independence & it’s such a carry on trying to get me & the wheelchair out the house & into the car. I don’t seem to have a purpose anymore & my husband treats me like fragile glass & try’s to do everything for me I know he’s only concerned but I want to shout at him to stop 🛑 then I feel awful for being mean how did you deal with all of that??? pxx
  • Ami2301Ami2301 Community champion Posts: 7,324 Disability Gamechanger
    Hi @Halfpint1319
    I know exactly how you feel, my mum and my partner look after me when I am at home and it's the littlest things that wind me up, but I know they are only trying to help. It really got to me the other day and I just broke down in tears, I explained to them that they've got to let me try and do things on my own, if I can't do them then I will ask for help. You do have a purpose, we all do. I know we don't feel like that at times. Your husband deeply cares about you, don't feel guilty. Everything you are feeling right now is completely normal. You will get through this along with your husbands help and the community's help :) 
    Disability Gamechanger - 2019
  • Halfpint1319Halfpint1319 Member Posts: 14 Listener
    Your comments are exactly how I feel, it is the smallest of things that make the biggest impact. Michael & I have only married for a year & he not only looks after me but my son & daughter (16 & 21) he makes it easier for them to do their own thing so they’re not caring for me. He’s even built a ramp so I can get out the house without me being man handled. I hate sitting watching him do it so I try to help out as much as I can, I love to cook but because my counters are now to high I struggle with it plus it takes twice as long to do anything. I’m sorry I sound really moany I’m beginning to find things I never knew I enjoyed before. @Ami2301 I feel better knowing someone is going threw this & understands how I feel thanks for your support pxx
  • Ami2301Ami2301 Community champion Posts: 7,324 Disability Gamechanger
    @Halfpint1319 no need to apologise for how you feel :) it's a constant battle but we will get there :) if you ever need to talk, you're more than welcome to send me a message :)
    Disability Gamechanger - 2019
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Halfpint1319 and a very warm welcome to the community, it is great to have you here! Coming to terms with your health condition is something that I am sure a lot of the community can relate to. I hope you find the community a supportive network and find individuals who can relate to what you are going through. Please let me know if there is anything that I can do to help! :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • Sarah1965Sarah1965 Member Posts: 4 Listener
    Hi, i too am struggling to accept my disability. Unfortunately i live on my own, and dont have any support structure. Every day my situation gets me down. 
    I have looked into buying a light weight mobility scooter, so i can get out, and have some form of a normal existence.  But have found that even when taken apart, they are to heavy for me to lift. I feel so isolated, i to try , i can still drive an automatic car, but when i get to where ever, am unable to ealk more than a few yards. Can any one suggest something i have not thought of 


  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Sarah1965, sorry to hear that you are struggling. Do you have any support in place to help you with this. If you feel low then Samaritans offer great support 24/7. Sorry to hear that you are feeling isolated, I hope the community can help. If you are looking for advise about a lightweight mobility scooter then it may be worth posting something on the disability aids/ equipment section of the community :) Hope you have a lovely day!
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • Sarah1965Sarah1965 Member Posts: 4 Listener
    No, im doing this alone. 
    I am aware the Samaritans do a marvelous job. And i have been in discussions with one of the largest manufacturers and they will pass my comments to their design team. 
    What i was hoping from my original comment, was to have contact with others in my situation. 
  • CbearCbear Member Posts: 14 Connected
    edited September 2018
    Hi
    I'm 43 and have been battling a spinal condition must of my life.  I've had failed surgery and a whole array of other treatment over the past 30 years. I was always able to get back up and mobile.  Always took time and care, but I always managed to put away the crutches and get back to some way on living again.  May this year my life completely changed and I have no real idea how.  I just started using my walking stick and crutches again due to pain.  After emergency MRI I had ruptured yet more discs in my lower spine.  I'm now on the waiting list for Anterior Spinal Fusion (not looking forward to it).  But for the past few months I've realised my options have run out.  There is no other treatment, I've tried them all. I've picked myself more times than I can remember in the past 30 years but this time I knew I had hit rock bottom.  I had no strength left to fight, exhausted from the constant battle of getting mobile again.  This is it, Spinal Fusion or Wheelchair????

    After 8 weeks of morphine and other prescription drugs and being bed bound I decided I had to overcome yet again my situation.  First thing I did from my bed was ordered an electric wheelchair (Freedom Chair).  Yes, it would put me in debt with my credit card but if I could get from the bed to the front door (I live in a bungalow which helps) I could get in my wheelchair and be free. I researched wheelchair a lot, didn't have much else to do laying in bed.  I didn't feel I could manage a manual wheelchair, so opted for electric. The Freedom Chair stated it was light weight, believe me it isn't.  but my husband sets it up uncover outside the back door, ready for when I need it.  This helped my mental health no end (I also have PTSD) but I can now go and get my son from school. I have battled against having a wheelchair for so long but really it's given me so much.  It's given my body time to help it heal, I don't feel so exhausted from using my crutches all the time and I'm off the dreaded Morphine.  I'm far from fixed and will still need surgery, which i'm still unsure will help (you hearing so many differing stories).  But at least with my wheelchair I can get out and about in my local village and days trips with my friends and family.  I can't do what I want to do and that's caused me great frustration .  I've learnt there is no point sitting back getting depressed and expecting life to still be the same as before.  I've had to find ways of adapting, changing routines, changing hobbies, changing lives expectations.  It takes me at least two hours to cook a meal from scratch, but so be it.  I treat it as a hobby, my work tops are to high so I use my kitchen table, sit and prepare everything.  It's a way I can give back to my hard working husband and 8 year old son.  They both care for me so much and I found cooking is a way I can give back to them.  Yes they fuss and treat me like i'm going to break but it would be a lonely place without them.  

    It took me along time just to accept the fact that since 2015 I was classed as disabled, let alone being out in a wheelchair. The looks, questions, comments, the fuss.  It's such a different world and finally one i'm almost happy and comfortable to be in.  Hopefully at some point I may be able to put the wheelchair away, but for now I've learnt that it's actually my best friend.  Yes I would love to have my old life back but while I was struggling to come to terms with my disability I was miserable, my poor husband and son I think I would of left.  But now i'm more accepting, life is looking brighter and some how slightly easier to deal with. 

    Always happy to talk xx
  • Halfpint1319Halfpint1319 Member Posts: 14 Listener
    @Sarah1965 first have you applied for PIP??? If you receive the enhanced mobility of PIP you can use it to get a Motability Car with hand controls, the basic system doesn’t cost any extra & it makes driving easier. They can also put a hoist in the boot (if you can walk the short distance to the drivers seat) to help you lift you scooter in but they can also put a storage box on the roof again it comes with a hoist which you have a remote for & it can be from the driver or passenger side, it will lift your chair into the roof box. I know I have my family & friends but I know a little bit about feeling isolated, because when they’re at work or have the usual everyday thing. I count the hours till they’re home. I used to say I liked the peace & quiet but that was I was able to do things on my own, now not so much. I hope things become easier for you & you find away that helps you get to where you want to be pxx
  • Sarah1965Sarah1965 Member Posts: 4 Listener
    Hi, when i applied for pip, i was awared standard for 5 years. But have deteriorated since. Its very difficult to go back and challenge.  I do drive an automatic as all my problems are on the left side. The drs have told me, that there is nothing they can do for me, even tho i suffer chronic pain too. 
    I would love a mobility scooter, but cannot lift anything, i am on the waiting list for social services to give me an assessment,  but in my area its a long waiting list. 
    The hardest thing is being alone, and having to try and cope. My nearest family live some 20 miles away, and are in their 80's so cant help. 
    I thank you for your response that means a lot to me x
  • Halfpint1319Halfpint1319 Member Posts: 14 Listener
    @Sarah1965 You can ask for the DWP to have a look at your claim again it’s called a mandatory reconsideration, because your worsening condition as it’s a change in your circumstances. The fact you doctors have said there is nothing more they can do for you will go in your favour as you’re not likely to get better but there is chance your condition will deteriorate. Pester your social services I know they’re busy but this is your life you’re talking about, have you seen by the pain clinic as they can offer a different drug regimens & other treatments such as steroid injections, nerve blocks & I have a spinal cord stimulator fitted (internal tens) but it only deals with the pain nothing else. I use hand controls because when my stimulator was fitted I had the same symptoms on the right which have worsened since then to the point I use a chair full time. I know up here in Scotland that you can register with your local shopping malls for use of there Mobility scooters if you tell them when you’re going to arrive they will book a disabled parking space for you & have the scooter waiting for your arrival, you have use of the parking space & scooter for as long as you’re in the centre at no cost it might be something to look into pxx
Sign in or join us to comment.