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

gwendaflow Member Posts: 3 Listener
My fiance has suffered chronic cluster headaches out of control for past 12 plus years. We fought and fought for all this time firstly 6.5 years to get any benefits then dropped him from dla to pip but won't recognise me as carer.  He's in the 10% of chronic sufferers.  He has 10 everyday day and night but have got worse to where he doesn't  have a break one into another for 6 weeks and counting.  Had to rush him in to a+e but couldn't help him. He didn't eat drink or sleep so neither could I 
 My health now is also suffering.  Was full time working but dropped to part time but now I'm on the sick and my boss isn't helping either.  He's very  dangerous to himself and others. He's a pacer and doesn't know what's happening around him. Very suicidal.  We are prisoners in our own home
 Curtains closed heating on full even in boiling weather.  I'm fighting government and my boss. Breakdown soon I'm so tired .


  • thespiceman
    thespiceman Member Posts: 6,390 Disability Gamechanger
    Hello @gwendaflow   Pleased to meet you welcome.

    Thank you for sharing. Sorry what you are going through.

    The community understands and may I advise how can the community help you. You say you are the carer. Yet may I suggest you need some outside support.

    If your fiancé is experiencing suicidal thoughts it is worth contacting The Samaritans. Look at MIND website for mental health advice.  Feel he is in danger or yourself then you may have to contact the hospital and take yourself there.

    Even call the Police if yourself feel threatened to be harmed.  Concerned.

    Have you spoken to our helpline 0808 800 3333. To see what help and advice they might offer.

    I would have a look on line to see what help and support you could get. I know it is not easy and I am hopefully understanding what you are going through .

    Consider talking to CAB or welfare rights regarding your benefit situation.

    Have a look at Talk about Specific conditions for help and advice information from our community.

    We are a community friendly supportive.  Ask the community anything.  Any of the community ready to listen.  I am one just let you know anytime. You are a member of our community

    Hope that helps.

    Take care


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Richard_Scope
    Richard_Scope Posts: 2,922

    Scope community team

    Hi @gwendaflow
    Welcome to our community I'm glad you have joined us. 

    I'm so sorry to hear that you're feeling this way. You are a member of our community and we appreciate you. 

    If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at [email protected]. You might also benefit from reading MIND’s information on how you can help yourself

    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 


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