Only so much 1 person can take! — Scope | Disability forum
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Only so much 1 person can take!

AmyRainbow76 Member Posts: 10 Listener
I'm 42, I've just been diagnosed with autism. I have a severe bowel condition that means I'm in constant chronic pain, and I'm on pain patches and high doses of nerve suppressants etc. I have functional neurological disorder, dissociative seizures, non alcoholic fatty liver disease, I have type 2 diabetes and I'm insulin dependent and despite 3 yrs of medication my levels are still at least 3 times what they should be. I've have hypermobile joints, so using crutches has become impossible. Last week I finally saw a physio, who told me to stay in a wheel chair, because using my crutches was too dangerous. Wheelchair services won't even see me, let alone provide a chair. My bowel condition has worsened and I can go over 10 days unless I take laxatives, my pain level goes through the roof and I can't intake food (I'm immediately sick after eating anything other than small bites), and I'm having to rely on nappies and a commode.
My only wash facilities are upstairs, but the stairlift has broken, and irregularly keeps stopping mid way up/down. I look like I'm an old lady, but still have acne.
My mental health is at an all time low and I really can't see a way forward, and worse I'm beginning to not want to find a way.
i've survived cervical cancer, domestic abuse, neglect from my parents, and have no friends or family support.

I get pip, but don't receive direct payments or a care budget, so my husband has to manage all my care; even the most intimate things; things that no wife wants her husband to see.

My children were taken away from us last year because I'm completely unable to meet their needs.

i don't know how I've survived this far; I don't think I can do it anymore.

if anyone has even a gram of positivity they can pass my way, I'd be so grateful. x


  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    Hi @AmyRainbow76

    You are a member of our community and we appreciate you. 

    it is important that you discuss how you feel 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

    You've raised some really valid points about accessing care for adults. Have you tried getting in touch with the National Autistic Society to see if they can offer any guidance? 

    I think you have tremendous inner strength and that's a positive.

    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Alex
    Alex Scope Posts: 1,305 Pioneering
    edited June 2018
    Hi @AmyRainbow76,

    Welcome to the community. and I'm sorry to hear about everything you're going through. You've come to the right place - this is a friendly and supportive community, and I hope we can help.

    Have you checked to see if there's any other support you might be able to get? For example, as your husband cares for you - does he get carer's allowance? We've also got an online calculator that you can use to check your benefits.

    Thanks for joining the community. It's good to have you here.
  • littleruthie123
    littleruthie123 Member Posts: 490 Pioneering
    @AmyRainbow76 I'm so sorry your feeling like this .i can appreciate how going through all these things is so blooming hard .the whole social services care plans ,all the benefit things can really get you down ,it has me and I've been sat in tears a lot of today .you end up feeling it's just one fight after another .well done for posting on here ,and I'm glad you have .i can't take away yours stress or problems unfortunately .but I can reach out too you and say .dont do anything hastey,things WILL improve I feels like it won't be we have too have faith.anytime you will like a chat ,cry ,scream I have open ears and a open heart .xxxxx
  • feir
    feir Member Posts: 395 Pioneering
    Don't know, i don't see the point in just existing in a poor quality state myself. When i was less disabled i was filling up my time doing courses but still able to have some quality of life with that. Now it's just like what is the point? I think we're supposed to just drop dead from neglect.
  • bandad
    bandad Member Posts: 8 Connected
    @AmyRainbow76, please, as hard as it is now, don’t give up and don’t give in. That is exactly what DWP hopes for. I’d recommend seeing your GP. With all the medical problems you have, especially your diabetes, bowel problems and seizures etc, all of that will be documented at your surgery. Visit your GP and explain the problems you are facing. Ask them to document your current health, and to give their opinion on it in a short letter, which you can send to DWP. My GP did it for free, so I should think most will. The DWP try their hardest to get us to give up quietly. Please don’t. Fight back. Appeal. Ask for a tribunal. You have a husband to help you with formfilling etc, I’m a widow and I had to do mine alone. It’s degrading and demoralising, that’s why DWP do it. But fight back! I’ve had 2 DWP decisions overturned. My tribunal appeal was allowed in less than 5 minutes, as I had concrete medical evidence on paper. I so hope you can figure out a life without so much stress. My heart truly goes out to you. xx 
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @AmyRainbow76, how are you doing?
  • AmyRainbow76
    AmyRainbow76 Member Posts: 10 Listener
    Really not very good. I went to a market with my husband on Saturday, and this is the first time I’ve been properly awake since, I’m lonely and lost. My husband is running out of patience. Because our direct payments were stopped over 2 years ago. We have no carers, no money we’ve had to sell our home, and I’m not even able to pack our things. Being the proud man my husband is, he won’t ask for help.
    so here I am, stuck in bed, unable to get further than the commode beside my bed. No friends, family, support, unable to pay movers, and feeling pathetic and lost. i’m  still shocked and distraught that I finally get to see an phsio and instead of offering a new type of crutch, or a walking frame, they tell me to give up tyring and stick with a wheelchair: basically give up
  • AmyRainbow76
    AmyRainbow76 Member Posts: 10 Listener
    Thank you for asking though.
  • Tigermoth42
    Tigermoth42 Member Posts: 243 Pioneering
    Hi @AmyRainbow76, it’s not much but I just wanted to send you hugs and love. I was so moved by your post, but please don’t give up, there are lovely people here to chat with and who offer great advice. My husband loses his patience with me, but I think it’s born more out of frustration that things don’t move forward with potential treatments than with me personally. If there’s any small thing I can do, please just ask xx
  • Jaytbm1
    Jaytbm1 Member Posts: 72 Pioneering
    Hi @AmyRainbow76, I am sending as much positivity as I can muster . You have been through so much in your life , and have got through it . Please get in touch with your Doctor to request an urgent letter to get your payments reinstated. You deserve every bit of help that there is going. Can you get in touch with your MP? to see if they can help with the Council who are responsible for your direct payments. They should never have been stopped. Talking about how you feel is to a councillor or the Samaritans can also help. I know that being proud is a good thing but not if it’s to your detriment. Please don’t give up , keep on at the physio , maybe get the hospital to assign you a social worker or occupational Therapist ( I know with the cut backs it’s not easy) to visit you at home to see how they can help you . Please don’t give up , sending love and hugs to you xxxxxx


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