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lucky i found this site

hi everyone, as i have been reading all your comments i have had tears in my eyes, i thought that only i was going through this awfull pain and suffering, iv slowly gotten worse over the years, i have fibromyalgia and polymyalgia rheumatica, many many years ago all this used to be called growing pains, but iv stopped growing now so thats a lie. I stopped work through ill health in 2004 I was a pcp board inspector, and slowly i couldnt sit for too long, lost concentration, memory loss, stiffness all over my body, feeling of nausia, now i find it is effecting my eyesight, plus the palm of my hands burn whenever i put them in water, or shower. I have carers who come in to get me out of bed and shower and dress me, when you cant get your arms to go round the back of your body to keep yourself clean, then all of your morals go out the window. I have learnt to live with my condition, although i do have the odd slip up and cry my eye out, sometimes it makes me feel good, a change from shouting and woe is me, that i cant take you have the condition well live with it. its not going to go away, and until someone comes up with a magic pill,!!! But what really annoys me more than anything is that we have to fight or prove that we are ill, to claim money so as we can live, it is expensive having this condition, you cant afford to get cold, if your still working you cant have items that you need to help you from the state. if you claim the wrong allowence when you do retire early and you have savings, or redundency money, with some benefits you will be means tested, therefore your savings or redundency are taken into account plus your partner, husband, wife, whoever if they live with you theres is taken into consideration also. But no-one tells you this as your filling in the forms only later when everything has gone through, now at the moment i am waiting for a wet room because i can no longer get my legs over the bath. up to yet i have been told that i wont need to put anything towards this wetroom but i will have to wait untill april of this year to see if i will qualify for the said wet room. As if we dont have enough to put up with we have to fill in tons and tons of paperwork, make sure you have all the relevent documents from gp,s or specialists, some you may have to pay for. Life is so wrong, when things are freely given to certain people, yet others have to fight/prove they need it much more.

Comments

  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello annieonwheels. That's a great username :D I hope you'll find us welcoming and helpful.

    Yes, life can be tough with any form of arthritis or disability but we are very supportive on here and we usually manage a few laughs too, especially on Chit Chat. Please join in anywhere you wish.

    I hope you get your wet room, if that's what's best for you. I dislike them as I don't cope well with sloping floors. Instead I have a bath lift which gives me full bathing independence - except when I've to call Mr SW in to scrub my back as, like you, I can't reach it either.

    I look forward to seeing you round and about :)
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • ouchpotatoouchpotato Posts: 453
    edited 30. Nov -1, 00:00
    Hi Annieonwheels, and welcome to the site. This is a fantastic place to be, and you'll find fantastic support here, not only for your condition but also in anything else you need it for.
    I'm sorry you are having a tough time of it; life is indeed very unfair when it comes to 'disabilities'. And you are so right about needing to keep warm when you have any of these horrible conditions; if I get cold my pain levels rise, but the cost of heating this house is horrendous (it is a big, old, draughty house but I can't afford to move).

    Anyway, I just wanted to say hello and hope to see you around.

    x
  • hileena111hileena111 Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Annieonwheels
    I have an email friend.....she is janeonwheels....love the name
    She has a similar condition to you.
    I have OA and kypho scoliosis
    Welcome to the forum....hope to see you around the forums

    Love
    Hileena
  • LubsLubs Posts: 155
    edited 30. Nov -1, 00:00
    Hi annieonwheels,

    Welcome to the site. I have found writing on this site a great help! I have only just decided to apply for ill health retirement, so am in the process of filling out these forms.
    A wet room sounds like a great idea, only yesterday I hurt myself trying to get out of the bath, at one point I was going to shout out for my husband to come and help me, but then I remembered that I had locked the door! I find the fatigue really makes me do stupid things without meaning to. I am now bruised on my right side, knee, elbow and my left should hasn't stopped hurting.
    Take care
    Lubs
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello annieonwheels, it's lovely to meet you and I hope we can help with information and support. I haven't had a bath for years because I can't get out (getting in is easy thanks to gravity) but find I can manage in a shower even though my legs are wrecked by psoriatic and osteo arthritis. I was self-employed but it all got too much so I've stopped work now (and feel much better for it). I receive the higher rate mobility part of DLA but I suspect will be reduced to lower when I am assessed because I use walking aids.

    The Living with Arthritis board on here is where we deal with meds, appointments, tips and hints etc., Chit-Chat is for non-arthritis related matters and here is the Benefits and Working bit as you have discovered. I look forward to seeing your name here and there around the boards - I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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