general questions about disability living

auntyphyl
auntyphyl Member Posts: 8
edited 7. Jun 2010, 07:37 in Community Chit-chat archive
I am new to this site and quite new to fibromyalgia polymyalitis arthritis. Confirmed jan this year. My doc said it was bad news, he said he would try to get me pain free in a month or so. He said it was aggressive treatment that would have side effects. I also have under active thyroid. He also suggested that I apply for disability living allowance straight away and he would support me in it . The questions may be a little cheeky and I dont want to upset or cause any thing deemed too personnel to anyone on the forum so sorry if out of order. 1, is it usual to get DLA for these conditions. Ive been for medical exam. 2, I am unable to walk very far at all with out pain, back shoulders hips and back of legs. Is this usual as well. 3, my husband has had to take over the housework and cooking as standing is painful. 4, According to some people this can flare up for 2 months to five years or longer before going into remission. Doctor says its a lifelong condition and he's sorry but will try his best for me. Has anyone got any generalized answers for me. I am 57 by the way too young to retire and not fit to work.

Comments

  • frogmorton
    frogmorton Member Posts: 29,826
    edited 30. Nov -1, 00:00
    Hi auntyphil

    Welcome to the forums from me :D

    Now I am sorry about your diagnoses, but I am glad you found us :D

    If you havent already applied for DLA can I suggest you get some help in completing the forms?? Suggest CAB as they do tend to get a better success rate than we do alone.

    Other tip is to photocopy the completed forms - then if you need to appeal you will remember what you put and also if you reappply in future.

    Good luck

    Love

    Toni xx
  • auntyphyl
    auntyphyl Member Posts: 8
    edited 30. Nov -1, 00:00
    Thanks Toni,
    Cab was someone who suggested I apply as well but I filled out the forms. Sian at cab keeps in touch though and I photocopied the form. But am still waiting for more news from end of March/ beg April.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    auntyphil, firstly what a gorgeous name. Secondly, I reckon you qualify in spades, but these things do take time to come through. You have the support of your GP, which should really help and you are also facing great difficulty with mobility etc.

    When I applied for DLA (years ago now) I was granted it on my first application - this now seems to be unusual. I was not given a medical and granted them access to my GP and hospital records as a matter of course. Whether that helped or not, I don't know. I now realise that I have been fortunate, they do seem to have tightened things up a great deal, sometimes very unfairly.

    Be prepared for disappointment. They are now very tough, be prepared to go to appeal and fight. Have you also applied for a Blue Badge? I would not be without mine.

    As others have said, keep records of everything. All 'phone conversations, all letters, a diary of symptoms, when pain is worse or better, anything connected to you and your struggle. I do not have the same as you, Psoriatic Arthritis is my foe, but I do empathise with the daily struggle etc. Chin up. We're here, to cheer and entertain, or to sympathise when it all gets too much. No question too small or unimportant. I am a recent recruit to these forums and the support I have had is beyond price. I wish you well. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • auntyphyl
    auntyphyl Member Posts: 8
    edited 30. Nov -1, 00:00
    Thank you Dreamdaisy, your post is very encouraging. My name is Phyllis but I ve been a foster carer for over 24 years everyone calls me aunty Phyl or mum even the kids in the road. That sort of harps back to when I was a child, all our neighbours were aunties or uncles and people knew each other. They could be relied on if you ever needed help or just to talk to. As kids you could always go there if you were locked out till your mum came home ect they used to feed you as well. The road where we live is not too bad a bit clique the younger ones tend to socialize together and the older ones the same. I might not know all their names but at least we wave when passing by.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Firstly, I apologise for mis-spelling your name. Secondly, despite being 51 (and much to her annoyance) I still call my mum's next-door neighbour 'Aunty'. I just can't call her Peggy. Wasn't trained that way! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hi Dream Daisy,

    I have an unofficial Aunty Peggy too. A friend of OH family for years!She says we are just like family to her anyway.

    Aunty Phyl,
    Good luck with your DLA application. Make sure you tell them as if it is your worse day as symptoms can be variable.New medication might make you feel better and that happened to me when I applied for my 1st DLA . The doc saw me during this good time and I didnt get the DLA but within 3 months I was back to my previous painful self. I missed out all round.
    i have got my forms to fill in too. Good luck.
    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • rondetto
    rondetto Member Posts: 2,535
    edited 30. Nov -1, 00:00
    Hi Phyl, you are certainly in the right place here. All the replies are excellent and must be helpful to you.
    The CAB will help with the criteria that you must attain in order to qualify for DLA.
    Good luck
    Ron