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Fibromyalgia, inflammatory arthritis, idiopathic pulmonary fibrosis.

swanny1980swanny1980 Member Posts: 1 Listener
Hi all I'm swanny1980. I have fibromyalgia, inflammatory arthritis and idiopathic pulmonary fibrosis. When I am able to go out I get hassle as I don't look disabled. Even though I walk with 2 crutches as my balance isn't good. Some days I look perfectly ok because I don't want people to see me when I am in a bad way and can hardly move or when I have to stay in bed all day as I am in to much pain to try and get up. I have arthritis in all my joints my hips most of all the crutches help to take some of the weight so it doesn't hurt so much. I parked in a disabled space one day and this old lady started shouting at me how I wasn't disabled. She told me I was using someone else's blue badge. So i showed her it had my photo on it. The looks I get cause I only go out on a good day its maddening and upsetting I have gone home in tears due to some people. They can be ignorant to the fact some disabilities and invisible. I wish they could feel my pain just for an hour. I would do anything for an hour of no pain. When I see or hear of people that have what I have yet can walk a mile to town up hills work in a friends cafe and walk home and be ok yet get enhanced for mobility and care pip. I am on standard and I would not be able to do any of that. My hips pop and crack and I take 35 pills a day and have pain patches yet I still get a lot of pain. I wake 2-4  times a night and have to get out of bed and walk around the house. Sorry I wrote so much it all just came out, I think I was in auto pilot mode. Thank you for reading xxx

Replies

  • emmarenshawemmarenshaw Community champion Posts: 699 Pioneering
    Hello @swanny1980 , Sorry to hear you are having such a tough time. A warm welcome to the Scope Online Community. We’re all happy to help if you need anything or have any questions.
  • chiariedschiarieds Community champion Posts: 6,500 Disability Gamechanger
    Hi @swanny1980 - Welcome to the community. I'm very sorry to read about the pain you're in with all the health issues you're facing. Thank you for sharing, but I'm sorry about the Blue Badge bit; no-one should have to go through that, yet sadly I've  read of another person's equally poor experience here. It's something you shouldn't have to justify, but I'm pretty sure I'd be the same as yourself.
    Anyway, no need to apologise; you can say what you want here....even have a little rant!
    Now you've joined this very friendly & supportive group of people, do have a look around, & I hope you enjoy being with us all.
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,764 Scope community team
    Hi @swanny1980. You sound like you're in an immense amount of pain and I'm so sorry you're having to live with that. I hope you'll find plenty of support here. Please don't hesitate to get in touch if you need anything. :smile:
    Senior Community Partner
    Scope

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  • Chloe_ScopeChloe_Scope Scope Posts: 10,672 Disability Gamechanger
    A very warm welcome to the community @swanny1980! I so sorry to hear you are in so much pain. It sounds incredibly difficult and hard work. How are you doing today?
    Community Partner
    Scope

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  • deb74deb74 Member Posts: 671 Pioneering
    Hi @swanny1980. I am sure a lot of people have had problems with people ranting at them about using disabled parking spaces. This is caused by ignorance! I think we all know that 80 percent of disabilities are invisible. This ignorance is not helped by the outdated disability symbol which seems to suggest that all disabled people are in wheelchairs.
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