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what help am I intitled too with fibro

Posted , 3 users are following.

sarapainfree
sarapainfree

I currently work in a school at dinner times its only 7.5 hours a week but at the moment I'm struggling todo a full week as my pain is so bad I can hardly walk I don't know what is best todo stay in work or not altho my husband works 30+hrs I don't know how our other living expenses will be affected by tax credits etc please can any one help

1 like, 17 replies

17 Replies

  • deb97936
    deb97936 sarapainfree

    Posted

    Oh Sarapainfree....  I totally feel for you.  It's so hard isn't it to be faced with such adversity..   I hope your going to be able to create a comfortable compromise.

    I don't know where abouts you live Sara, or what sort of system you have in regards to tax credits.  Sorry I can't help there...

    Take care, and I hope you find a solution.  Someone maybe able to assist you..

  • debbie_1966
    debbie_1966 sarapainfree

    Posted

    Hi sarapainfree I was the same as you I work as a care assistant & had cut back my hours as I couldn't give up work altogether but found that even these hours were proving to be too much for me I have been on the sick for 8wks now I was advised to apply for PIP which I did it is a long process but worth it in the end if u r awarded it I keep hoping I will be able to return to work but this is beginning to look very unlikely but receiving PIP has taken alot of stress off me as it helps with the expenses each month hope this helps you

    Take care gentle hugs xx

    • sarapainfree
      sarapainfree debbie_1966

      Posted

      thankyou for your reply I did try for pip when I was going threw the hospital test scans etc but that was before.my dignosis and they said as I was able to plan a journey I wasn't intitled to it but now my memory has started being affected the past few weeks so iam thinking of re-applying x
    • deb97936
      deb97936 sarapainfree

      Posted

      That is pretty dam wet if you ask me... real dam pathetic to say 'if you can plan a journey, your not entitled!!'  That is dam sick!    Just how the hell do they justify that as a means to deny someone, that is absolutely shocking..
    • sarapainfree
      sarapainfree deb97936

      Posted

      a know I think I will try again they even had me doing maths to check out my memory
    • christine26761
      christine26761 sarapainfree

      Posted

      Sooo agree with deb grrrrr, you also have fibro fog, we all seem to get that, so dont worry too much over the memory, reckon we

      Should all write a book about our fog antics. Lol 😍😍

    • sarapainfree
      sarapainfree christine26761

      Posted

      haha at least iknow I'm not alone or going crazy on my own haha thank u so much this really helps x
    • deb97936
      deb97936 sarapainfree

      Posted

      I would challenge them about that...   If they were getting you to add and subtract etc... that's part of 'Battery Testing' for Head Trauma, Post Traumatic stress etc.   I would ask them if they thought you were maybe suffering from either of them!!!   And then say, on a bad day I can hardly spell my name let alone count  using my fingers, unless of course I  unexpectedly experience 'a ringer a ding ding moment of clarity.'  It may last a for 5mins or seconds, or maybe half a day, Not given the  options.  So, what do you know of Fibromyalgia and the Fibro brain Fog to know enough how to test a person for it?

      Because in truth, only a person with a Fibro Brain knows!!   Akin to a person with head trauma issues.   Also similar to a person with Post Traumatic stress disorder, and depression..   ONLY the sufferer truly knows the extent of what they are experiencing at any given time.  And I have had head trauma issues for years, coupled now with a Fibro brain.  I have made vast improvements BUT, a Fibro brain is a Fibro brain!!!!  

      YUP I would challenge them....   Take a digital recorder with you and record your conversations!   

    • sarapainfree
      sarapainfree deb97936

      Posted

      thanks u deb for your reply I will defo challenge it really helps with your advice they did have me adding and subtracting they recon it was questions on the system that they had to ask but when I got my decision it said I was able to plan a journey etc I didn't have the energy back then to fight it but will defo put back in for it as iam at the point where I may have to give up my job as I'm not able todo my full week
    • deb97936
      deb97936 sarapainfree

      Posted

      Ask and also put on the table in writing: - Citing the appropriate Act, eg 'a Full Disclosure' or 'Information Act' or what ever.  Infact ask a Lawyer to look up the actual Terminology to use.  Ours maybe a little different here I think.

      Your not doing anything wrong, you are just protecting yourself from being bullied.  You can say you are acting on the advice of your lawyer that you are entitled to put in writing your questions and that you expect full and prompt replies to all three questions in a reasonable timeframe, eg; 4 weeks.

      1. What is the (dwp/or other description) System, Medico Legal description of a Fibromyalgia Afflicted Brain, and what is deemed acceptable by the department as a Fibromyalgia Afflicted Brain. 

      2. What are the Standards approved, Tests and Controls that are used to determine the actual Functioning of a Fibromyalgia afflicted brain.

      3. What are the Medical Standards approved to Test and what are the Controls to determine a person with a Fibromyalgia afflicted brain at the varying degrees of deterioration.  

      You have to play them at their own game, and play it exactly like they do.  Again, your not doing anything wrong, you are challenging them at their own game and putting the ball back in their court and they 'have to' explain themselves.  

      The information is obviously critical ...  

      If I didn't co a simple challenge myself recently, I would still be sitting in the same position.  Instead the dept are forced into action to reassess 'properly' and not get away with fobbing me off 'yet again'...

      The dept have also said 'I can receive assistance with getting my lawns etc done', WOW...  how many times I have pleaded my situation up till just recently when I took they advice of my Cousin and she is a worldly, highly learned Corporate worker, and she told me exactly what I just said, 'you have to play them at their game, and play it just like they do'..

      Shows you and your supportive folk are NOT going to stand to let things go by without adequate knowledge of 'their strategies'..you pump them for the game strategies and you challenge them with their own words.

      You soon find out they are the ones operating on a 'flawed, inadequate and unfair system.  OR your dealing with a bunch of half wits that don't know how or what they are doing in their job apart from creating havoc and distress in lives of sick and disabled folk.

      Stand tall in your convictions, don't be bullied.  You know your illness and how it affects you, don't let them off the hook.  If you have to threaten getting a legal advocate to help you, do so. It's YOUR life not theirs....

      I so look forward to you having some positive outcome/s in the near future.  I won't waffle on anymore....you'l only tire of me..lol..  

      All the very best sarapainfree...  Big hugs x 

    • sarapainfree
      sarapainfree deb97936

      Posted

      that speech was really helpful thankyou smilewill defo let u know how I get on thanks for your advice and surport really appreciate it xx
  • christine26761
    christine26761 sarapainfree

    Posted

    Poor you Sarapainfree, gentle hugs...i really feel for you...i dont know how things work in the UK, im in Australia, i just wanted to encourage you.. but i know you'll get the right information on

    here that you need, this forum..is amazing..be blessed..have a lovely day.😍😍

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