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Hiya I'm Alison Netty

AlisonNetty
AlisonNetty Member Posts: 192 Pioneering
in Start here and say hello!
Hi. I have fibromyalgia and osetoartrightis.sorry about spell. Asthma.depression. arthirtis in my spine. Sciatica. degenerating disc. All my disabilities are invisible. No one believes me when I tell them just how much I'm hurting.
Its very isolating, I don't go out much as I haven't got a car. I have a walker and using the bus can be difficult when there is a pushchair. Walking is painful. 
Oh well at least I'm alive. Pleased to meet everyone. Hugs 
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Comments

  • deb74
    deb74 Member Posts: 777 Pioneering
    hello alison. it hard when you suffer from invisible disabilities. i suffer with ME, oesteoarthritis, spina bifida and scoliosis non of which are visible as i don't use a wheelchair. no-one sees pain. a lot of the time i am in agony when i walk as the arthritis is in my spine and my legs and also i get a lot of pain because of my spina bifida and always knackered with the ME. 
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  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @AlisonNetty
    Welcome to the community! You might like to check out these message boards on the list of discussions: Disabled People, Dealing with Chronic Pain, invisible Impairments and Mental Health Issues. Are you currently receiving any benefits?
    Disability Gamechanger - 2019
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  • AlisonNetty
    AlisonNetty Member Posts: 192 Pioneering
    Ami2301  I get ESA at the moment, I used to have pip at the lower rate but they took that away in May, I'm fighting that. Going to Tribunal, waiting for a date and time. which is stressing me out. Everything is put on hold until this is over... I have to wait to move into a smaller place as I'm in a two-bed room house. I have no help in doing the gardens so I have to move from my home of 32 years. 
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  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    I'm sorry to hear this :( Have you considered a mobility scooter?
    Disability Gamechanger - 2019
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  • AlisonNetty
    AlisonNetty Member Posts: 192 Pioneering
    I can't afford one.. but would love one. 
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  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    It might be worth asking your doctor to wheelchair services, they will assess for what is best suitable for you, maybe a powered wheelchair :)
    Disability Gamechanger - 2019
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  • jane1973
    jane1973 Member Posts: 175 Pioneering
    @AlisonNetty welcome, i too have fibro and a combination of other illnesses that are invisible, my pip was taken away in may also and i am waiting for an appeal date, its like you said our world has to be put on hold because of this, wish you all the luck with yours x
    Hugz to everyone xx
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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Welcome to the community @AlisonNetty :)
    Scope
    Senior online community officer
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