Hi, my name is Ninii81! — Scope | Disability forum
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Hi, my name is Ninii81!

Ninii81 Member Posts: 3 Listener
I have multiple conditions including fibromialgia, hidradenitis, hemiplegic migraine, raynauds disease, brain damage and more on top,and now been diagnosed with arthritis. I'm trying to work but finding it a struggle and been refused pip as they lied in the report following an assessment. I'm trying to find a new less strenuous job and can't afford to go on the sick. I'm currently on a lot of painkillers just to get through the day. I also have bipolar and am feeling suicidal at the moment as I can't see an end to the pain I'm in or how to get help with anything. No one seems to understand so I have no one to talk with. 


  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @Ninii81 - Welcome to the community & thank you for joining. I'm sorry to read about all the difficulties you're facing, but you're not alone now; you have people here to talk with & help.
    Can I ask when did you get the decision letter about PIP?
    Are you receiving any help for your mental health?
    I'm also going to ask one of the Scope team to advise. @Chloe_Scope would you help here please.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    Hi @Ninii81 and a very warm welcome to the community! It is great to have you with us and I'm sorry to hear you have been struggle with your mental health due to pain.

    I was just wondering if your GP was aware of your mental health and if you have any support for this? 

    If you are feeling suicidal then please contact Samaritans (116 123) which is available 24/7. Alternatively, you can contact the crisis text service Shout (you can access this by texting SHOUT to 85258), or SANEline (0300 304 7000) who are open from 4.30pm to 10.30pm every day of the year.

    I don't know if you have a smart phone, but there's also the Stay Alive app you can download.

    Do you have any support at work? These articles might be helpful to you:
    You also might want to look at Scope's employment services. Please do ask questions if you would like more information.

    To Echo @chiarieds, when did you receive your PIP decision? It is possible you'll be able to appeal it.

    Please take care and be in touch if we can do anything to help.


  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @Ninii81

    Good Afternoon & Welcome it’s great to meet you today ?

    I am one of the Community Champion’s here at Scope?

    My “chronic pain” started in “2005” following more “Brain Surgery” (Radiation)

    You have had some great info/advice above?

    If you need any help going through the info please please let me know ??????

    We have got some good info/advice on pip on here as well?

    Please please let me know if there’s anything that I can help you with the “pip info” ?

    Please please please come back to me if you have any thoughts (Suicidal)

    Yes yes yes I do understand what you are going through.

    “Every Day” is a “Battle” but there will be only “one winner”



  • Ninii81
    Ninii81 Member Posts: 3 Listener
    Hi and thank you all for your kind words. I'm returning to work on the 8th of January and I've asked for a risk assessment to be done as currently my role is very physically demanding, I don't know what adjustments can be made yet or if there willing to help, I feel anything they do will be temporary.. I can't appeal my pip as it was quite some time ago and I'm left feeling that re applying is pointless as they lie in the assessment. I have bipolar but that's a recent diagnosis and currently on an antidepressant but the psychiatrist dealing with me has asked for a referral to neurologist as I have something wrong with my brain and there waiting list  means I won't be seen until October so I won't receive any sort of treatment for that until the neurologist has assessed me. It seems I have multiple conditions no one can treat and they all pass me around and don't believe I have so much wrong with me. I can't afford to be on the sick as we're not managing financially as it is but I can't get any help either. I get so down and just feel if I end my life I'm no longer a burden and I'm free from all these problems. I don't want my children to go trough all this for the rest of there lives so I keep trying to be OK and can't seem to talk to anyone. Sorry for rambling 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @Ninii81 - This is what this community is about, where we support each other & can say how we feel amongst others who try to both help & understand. I hope Chloe's links about 'reasonable adjustments' at work may help as this will support you in being able to continue working.
    It might be worth looking at PIP again once you get things settled at work, as, if you find your problems are affecting your ability to do things as against the 'descriptors' then you will be able to get some advice here about it. It's not about any diagnoses, but how these affect you, so you don't need to wait until you find out more.
    That's an awful long wait to see a neurologist, I'm sorry. Is your GP able to support you in the meanwhile? It probably would be worthwhile letting them know just how difficult things are with you.
    Are you receiving any help in the way of benefits?
    There, I've rambled too......it's allowed here, you're among friends!

  • Ninii81
    Ninii81 Member Posts: 3 Listener
    I've just applied for universal credit, and had a nightmare being hacked and someone has all my information like name address DOB and NI number. And had to change all passwords extra on all accounts, informed universal credit and they seem like this happens alot and won't do anything, the only way to protect my self against fraud now is by paying an online fraud protection company. I owe money for a loan from universal credit and tax credit overpayment from last year so finances are a mess. The gp's have been useless as they have caused a delay in treatment after telling the Psychologist I didn't have cerebral atrophy yet I had evidence and the brain scans from buying my medical records for pip.. There response was they don't list all medical conditions on your file incase you need travel insurance or want to go in the armed forces.. Everything seems a mess at the moment but it seems the kindest people are strangers that are also suffering and family and friends look the other way as they don't know how to handle my inability to cope. because I have invisible conditions and don't look how people would expect, they can't see the pain and struggle and I appear "normal" as some have commented like I'm supposed to be a stereo type to receive help or they don't believe me because I'm independent and struggle on without showing how much pain I'm in. You get penalised for trying to get on with things and if you don't fit into a certain box and look sick. It's like I have to fight every thing and everyone and I've lost the ability to do that at the moment. I'm trying to read through the work adjustments and links and make notes but I'm terrified about this meeting, I work for age UK and I know there a disability friendly employer and I still worried they will say if I'm not upto the job then I will have to leave.. Then what do I do. 
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    edited January 2020
    Hello @Ninii81    Pleased to meet you.

    I am sorry to hear what you experiencing .

    I am one of the team of community champions.

    Also have a lot of advice, guidance on mental health.

    My own personal history, have anxiety, depression plus addiction history.

    Knowledge expertise and information to the community.

    Please if I can suggest the following mental health charities.




    All these charities do one important aspect help you cope with your issues and problems. Advice on wellbeing, benefits, health and much more.

    Do take clientele with additional disabilities signposted to any other relevance to those illness or conditions or disabilities.

    RETHINK is an advocate charity speaks on your behalf represents you on issues with any mental health services or medical professionals. Could help with appointments.

    Offer floating support in the community and even work. One such as Richmond Fellowship has a support work programme works with employers.

    I would like to add one other aspect of these charities help with situations your going through right now.

    Benefit problems and any difficulties.

    All charities might not be all areas.

    Please if I can help further need a friend listening ear. I do offer compassion, empathy and sensitivity.

    Be supportive anytime.

    Please contact me, anytime.

    Please take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.


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