Disabled people
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The dodgy spine issue

suebedoosuebedoo Member Posts: 6 Listener
Hi,
I've just joined Scope & already I'm really happy that I have. I'm 45 and have a crazy sense of humour, I've just been awarded pip for my health problems, but my moto is definitely, "I'll get there eventually!" I'm studying various courses & atm I'm doing diet & nutrition and creative writing. I'm hoping to eventually be able to write my own articles that are both informative and funny.
I spend most days hobbling and limping about, the funny looks I get are amazing, the most usual one is "she's a bit drunk" which I usually reply with, "no I'm not, I just happen to have a rusty slinky for a spine!" I often have people shout at me as they assume I'm hard of hearing, they seem surprised when I explain my patch isn't due to my ears, it's there for pain relief.
My mum also has disabilities & has been wheelchair bound for several years. I was shocked the first time I went shopping with her, to see people leaning over her chair while she was stationary viewing items on the shelf. A quick beep from her chair soon made them jump in surprise and my mum.saying, "while you're standing over me could you pass me a bottle of that sauce please" I couldn't stop laughing!
It's tough somedays, but I use my sense of humour to keep me going. If only I had a £1 for everytime I've been asked what's wrong with my legs, (when it's my back) I'd be a very rich woman!
I love it when people say, "why are you walking funny?"
"because I'm auditioning for a part in the film, Ministry Of Silly Walks!"
Prejudice and ignorance needs to stop. We are people with so much to give to this world, whether our disabilities are visible or not, together we prove and show just how magnificent each and everyone of us are!

Replies

  • EmmaEmma Member Posts: 88 Connected
    Great to have you on the community. Thanks for joining! Have you seen Elisabeth's thread about art as therapy? She wants to hear from other people who use their creativity therapeutically. Perhaps you'd like to chat to her about your creative writing? https://community.scope.org.uk/discussion/28226/creativity-as-therapy
  • suebedoosuebedoo Member Posts: 6 Listener
    Hi Emma,
    Thanks for a lovely welcome, I'll have a look at Elisabeth's thread, it sounds great & anything that helps take away our focus on pain is a good thing
    Cheers
    Sue
  • RobsRobs Member Posts: 49 Courageous
    Dodgy spines is subject close to my heart Sue. I am really pleased you have been awarded PiP the money helps. I don't think politicians truly understand the extra cost of being disabled though. I have had 18.5 hours of spinal surgery for Scheuermanns Decease, with something like £16,000 worth of titanium being screwed to my thorsic spine. Last week l had to go to see a Neurosurgeon as l have a Lordosis in my neck which has damaged some nerves in my brain and need to have them killed off to stop displaced pain.

    Talking of the cost of being disabled, here is a list of the added cost of a single hospital visit.

    Hospital 40 miles away = 80 mile round trip cost of petrol £32 @ RAC Rate 40p per mile

    I could have patient transport, but my carer is not allowed to travel in it (stupid or what)

    Hospital parking fee £3.25

    Hours for carer, bearing in mind he had to come to my house, wash and dress me.
    Total hours 9 @ £11.27 per hour £101.43 this includes driving time, ablutions, waiting in the hospital etc.

    Total cost of just one hospital visit = £132.68.

    I have two further appointments in August and a hospital stay for the surgery.

    I, like you used to deal with it all using humour, like when l had a day out to Cheddar Gorge with my wife and five children. We sat outside a cafe and my wife ordered two latte coffee's and five cokes. The chap bought our order out, looked at me in my wheelchair, then said to my wife "does he have sugar" we all laughed.

    I hope you keep your sense of humour, but I'm afraid mine has disappeared.

    Take care and good look.

    Rob
  • suebedoosuebedoo Member Posts: 6 Listener
    Hi Rob,
    You're really going through it. Glad to hear you're battling on though.
    My mum's in a wheelchair & people often speak to her really clearly and loud, she often turns round and says, " It's my legs that don't work not my bloody ears!" I was amazed at when she's shopping how many people just lean over her as if she's not there. She now presses the horn on her chair and makes them jump.
    I'm doing alot of studying atm, I'm doing diet and nutrition diploma, Ecdl, Microsoft office, first aid & creative writing. I'm hoping to eventually be able to write stories & blogs aimed at children to help them learn at an early age, about issues that can affect us at anytime or when we get older. I'm going to our local surestart centre next week to ask if I can help voluntary and see how much enthusiasm I can get & take it from there.
    Hope everything goes well for you and your upcoming hospital visits.
    Cheers
    Sue
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