I have just been diagnosed with d.i.s.h and arthritis and fibromyalgia and I also have high blood pr

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hi am patricia from uk I have just been diagnosed with forestiers,arthritis and fibromyalgia I also have high blood pressure I  don’t know much about d.i s h I am in constant in pain in my back neck and shoulders I can’t walk far cause of the pain in my back I have to keep sitting down I can’t stand long eithier as that’s  also painful I was wondering if anybody can tell me what the future is for me and how bad this can get I would appreciate any help about d.i.s.h my husband claims pension credits for me is there any more I can claim and is there any help I can get to help me to do simple things in my home like standing to cook o rice wash pots sometimes it’s hard to climb in bath and wash my hair as i can’t lift my arms up 

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  • Posted

    This is a link to a very long thread from a few years ago where you might find some info:

    https://patient.info/forums/discuss/living-with-forestier-s-disease-31038

    You may be entitled to a grant to have a shower and possibly other aids installed - I don't know details and I rather suppose if you own your home it will be harder. If you rent there may be help - one of my friends ls in a rented home and the council paid for a shower because she couldn't use the bath at the time.

    Have you investigated attendance allowance? That is to help the costs of having someone to help do things you can't. Having attendance allowance entitles you to other benefits - including pension credits so maybe the other way round works too. 

    Go to the ageuk website and under Information and advice you will find links to various benefit information including Attendance Allowance. There is also Carer's Allowance - which your husband won't get because he gets state pension (I assume) but they say to apply because it might increase the other benefits he gets. 

    I'd give you the link - but it will go for moderation I expect!

    And when you read the other thread - remember that if it sounds depressing anywhere, it is usually the people who struggle you meet on the forums, the relatively well ones aren't here!!!

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    • Posted

      Thank you so much I live I. A council house I don’t know how do go about getting help I went to hospital yesterday for physio she said something about a stool to help me in kitchen but I forgot to ask her how to get one 
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    • Posted

      See your GP and ask about referral to Occupational Therapy who should be able to assess you for items that the NHS can supply - obviously they can't hand out everything. I lived in Durham at one time and there was a day centre that had a shop attached where you could see all the items that were available for purchase - and some could be prescribed if you needed them. Maybe there is somewhere similar near you.

      Contact your housing office to find out how to go about applying for assessment and help for installing hand rails, a shower, bath lift perhaps and so on. If you are really stuck - contact Citizen's Advice for more info.

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    • Posted

      Thank you I will talk to my gp and phone the council thank you so much for your help I know that I won’t get better and it will just get worse but I am doing the exercises and I am going to go slimming world with my daughter to help lose some weight I try to keep going and do my housework and shopping my husband drives so we go in car I have to keep sitting down because it’s to painful to walk far I am waiting for a letter to go pain management 
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