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Fluctuating conditions

charlenecharlene Posts: 555Member Pioneering
my problem is that I have Fibromyalgia, Arhriitis in neck , lower back, both knees. carpal tunnel syndrome , DISH, spondolosis, and depression and anxiety.  At times my lower leg muscles tighten up and I can only walk 3 to 4 steps before waiting until I can shuffle back to my chair. Other times the minute I start to walk I have acute pain in my lower back  and cannot walk far . On a day like that I tend to say at home. Other times when I am out both those things happen and with stopping and starting I get back to my car and drive home.  Please, how do I measure the time it takes me. Once someone starts questioning over and over again, I can't cope and don't defend myself properly.  Only yesterday I was having problems getting back to my car - maybe 18 to 20 feet.  A young woman noticed my dilemma and asked if I needed help, and I was only to pleased to say yes. This is not the first time this has happened, but thankfully for angels like this young lady. My mind can just about cope with yards/ metres, but completely leaves me when asked about minutes.
When the going gets tough, the tough get going.


  • lillybellelillybelle Posts: 455Member Pioneering
    When you go for the assessment you tell them what you are like at your very worst. Not that it fluctuates 
  • charlenecharlene Posts: 555Member Pioneering
    The problem with that on the day of Tribunal I maybe able to walk more than 3 to 4 steps. I would look like a liar.
    When the going gets tough, the tough get going.
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    To meet the PIP award criteria you have to be sufficiently disabled 50% of the time, i.e. at least 4 days a week.  To get enhanced mobility PIP you must only be able to walk up to 20m before you need to stop and rest for a few minutes on 4 days a week.  In other words, to qualify for enhanced mobility you can walk up to 20m, not only 3 or 4 steps, on 4 days  a week.

    Don't know where you are at with PIP, but if you still have to claim, if you can only walk up to 20m on 4 days a week, put that down.  If  necessary at the f2f you can explain sometimes it's only a few steps, sometimes farther.  Similarly, if you are at the point of making a submission to a tribunal.

    It's possible to over-complicate how fluctuating conditions affect you.  Keep it simple - I found that my assessor and my tribunal wanted things kept simple.  I got standard both components after assessment and enhanced both components after tribunal.
  • charlenecharlene Posts: 555Member Pioneering
    Thank you Matilda I think I over complicate it and then I am my own worse enemy and can't cope.  What I have described are a daily occurrence  and I have to rest, go to sleep to recover.  Not sure if I mentioned at my assessment I have to rest etc to recover somewhat. Normally in bed by 7.30 ish only place I can get some pain relief and of course much needed sleep.
    When the going gets tough, the tough get going.
  • thespicemanthespiceman Posts: 4,793Community champion Disability Gamechanger
    Hello @charlene Pleased to meet you.  I assume if you do have an assessment.  You will have some one with you who is supporting you.

    The importance of that is I believe a requirement.  I ask many questions of my self.  Yet I have to decide how am I today.  You have to be honest and say to yourself on a bad day I am this.  Keep it simple, have possibly some one to speak for you.   On your behalf, explain how bad you really are.

    Remember you are not lying you are not deceiving any body.

    You have to reassure your self.  I suffer from anxiety.  I keep thinking these assessments I have done.  What if it goes around my head and effects me mentally.  To the extent I am ill.  You just need to think if and when what you are.

    How you are and how everything effects you day to day.

    Take care

    Always here to listen
  • MisscleoMisscleo Posts: 580Member Pioneering
    That was very kind of you spiceman
  • thespicemanthespiceman Posts: 4,793Community champion Disability Gamechanger
    Hello @Misscleo Thank you pleased to meet you.  I can but try to help and support any body in the community.

    Who needs some one to listen, have a chat or just be there for comfort and soothe the pain away.  I am aware of we all need some one to just be there.  Mornings a friendly chat or a good bed time story been sending a lot of those.

    See my posts in my usual style.

    After all the community are kind and supportive to me.

    Made many friends thank you I love you all.

    Take care so I am here for you as well.

    Offering the hand of friendship

    The Spiceman
  • MisscleoMisscleo Posts: 580Member Pioneering
    Thank you. your hand of friendship is greatly appreciated 
  • deb74deb74 Posts: 325Member Pioneering
    hi charlene. when i had my assessment the woman from capita came to my house. like thespiceman said remember you are not lying and don't tell them your condition flucutuates. i have degeneratve discs, spina bifida, hydrochepalus, epilepsy and oesteo arthritis throughout my body (sound like a hyperchondriac) but some days i can walk with little or no pain other days i can walk but in agony and on a really bad day i struggle to walk from the lounge to the kitchen to put the kettle on. talk to them as if it is your worst.
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