Thursday 25 August 2016

It's not all mobility cars and carers :0(


Where do I start?

I was thinking the other day after being scalded for the third time in one shower that a lot of people have a warped idea of disability in this country.

They think it's all free cars and parking and home helps and sunshine! That couldn't be further from the truth!

My husband and children are autistic. My husband had an accident at work and broke his back. Several specialists have told him he will never work again. Then I have Fibromyalgia which in turn gave me Type 2 Diabetes and other issues.

I applied to the council for help and asked for a bedroom downstairs (as I have been stuck in this room upstairs for over 8 years now) and a wet room. They gave me the run around for a year saying I had been approved for the grant but would have to wait to get to the top of the list, so I wait a year then they tell me the £31,000 won't cover what I need and I have no money to add to the grant so I am still stuck in the bedroom.

We applied in the past too with the backing of my daughters specialist for a walk in bath with a shower over it. The bitch (that is the nicest word I could think of) who came out to assess us first said oh we don't do anything for people who stay upstairs, and finished with "can I just check she has got legs and can walk" regarding my daughter.

Fast forward to now and my daughter is now 13 and needs help to wash her hair. She has to cover up with a towel while my husband does it in stages as he can't bend down for long. I tried it and was in agony for days after. I can't teach her to shower herself for fear of her being burnt. If someone in outer mongolia turns their tap on while I am in the shower off goes the cold and you can picture the rest. Taking into account I am on a shower stool and can't move quickly you can understand my frustration.

We asked Yorkshire water to fix the problem and because we own our house apparently we have to pay roughly £1,500 to them to run a pipe to our boundary then we have to pay yet another plumber to do the rest, which I assume will be another couple of thousand!

So while the people out there think the disabled have things handed to them on a plate I am here to prove that just isn't true.

We are living in a house that doesn't work for us with no hope of improvement or moving, seeing my days out stuck in a bedroom in a house I hate. This house isn't worth enough to sell and buy a bungalow which would suit all four of us. If we sold it to rent we would lose our benefits and would have to spend all the money on rent and living expenses till we had none then claim again for benefits. I pray everyday for a lotto win, not that I am greedy I just want to get the hell out of this house!

Thanks for reading this far (if you did)
Just wanted to show the real picture of disability in Yorkshire!
Hugs :0)
xxxJoolsxxx


10 comments:

  1. Hi, sad to read that you're stuck upstairs! I wondered if you have had a fire officer give you a safety check? Would that help shift the council, I mean, if it's hard to get out of the house if there was a fire?
    Maybe worth trying if you've not already tried. Xx

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  2. Hi, sad to read that you're stuck upstairs! I wondered if you have had a fire officer give you a safety check? Would that help shift the council, I mean, if it's hard to get out of the house if there was a fire?
    Maybe worth trying if you've not already tried. Xx

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    1. Never thought of that but to be honest my council have no intention of ever helping me and just use any excuse they can. I mean really how can £31,000 not be enough to build on another bedroom/wetroom? Thanks so much for reading and commenting it really means a lot. I was thinking of writing to my MP so may drop in your idea about what do I do incase of fire :0) xxx

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  3. You're welcome.It must be so frustrating. Saying they don't do anything for people stuck upstaira sounds like BS to me TBH. And the £31,00 not being enough to build a wetroom does too! Deffo worth taking up with your MP.
    I had to have a wetroom made a few years ago as I couldn't get in the bath. It took a fight and long wait but got it in the end. Changed my life for the better.
    I asked for a Fire Safety check on a 'tip off' from my OT (was lucky enough to have a nice one) and she said their reports carry a lot of weight with the Council re adaptations. Their report helped me get doors I could open easily (shoulder probs) which Council were talking at doing. Here's the service, it is free too.
    http://www.fireservice.co.uk/safety/hfsc
    Hope it helps you and your family. Good luck xx

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    1. Thank you so much I will look into that :0) xx

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  4. You're welcome.It must be so frustrating. Saying they don't do anything for people stuck upstaira sounds like BS to me TBH. And the £31,00 not being enough to build a wetroom does too! Deffo worth taking up with your MP.
    I had to have a wetroom made a few years ago as I couldn't get in the bath. It took a fight and long wait but got it in the end. Changed my life for the better.
    I asked for a Fire Safety check on a 'tip off' from my OT (was lucky enough to have a nice one) and she said their reports carry a lot of weight with the Council re adaptations. Their report helped me get doors I could open easily (shoulder probs) which Council were talking at doing. Here's the service, it is free too.
    http://www.fireservice.co.uk/safety/hfsc
    Hope it helps you and your family. Good luck xx

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  5. I will keep praying sweetheart xxxx

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  6. was re- reading your post today and I thought that it was so funny that the add in your sidebar was about purchasing solar HOT water! LOL! Life is strange (especially with chronic illness.)

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    1. Only just seeing these comments now so annoying grrr. Sorry I missed it :0) xx

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