I have been bedbound for 5 years with no support - LUPUS UK


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I have been bedbound for 5 years with no support

littleone63 profile image
8 Replies

I'm a carer to a disabled mentally ill woman, i have been bed bound for five years. I'm very scared and i'm crying all the time, i see no one but a stretcher for appointments via ambulance.I cant get a bath as i have no disabled facilities, i can manage 7 steps and i eat by sitting on a pillow on my toilet seat as i don't have a proper seat or room, i have a tiny table in the bath beside the toilet to eat off. Thing is i have had an esa50 form for the disabled lady but the fill in doctor has written an awful letter to back her up, in it the doc said i was a friend? I have been her legal carer since 2001, she also said she could not work currently, my disabled lady cant walk more than 12ft. We are both going to end up homeless, what do i do, i'm bedbound but still got my brain and hands and phone for my internet. I wish i was dead and my disabled lady szys she will commit suicide, i said we will do it together, i can't fight all this with the dwp. The tories will have blood on their hands as i cant cope. I'm 48 and 43 when i became bedbound. Life is awful, all friends left when i became bedbound, none of us have family. Any advice would be welcome before we both end up dead. Many thanks for a reply.

8 Replies
pollyanna profile image

I am so sorry to read your post, and very alarmed by it. I think you need to get in touch with Social services immediately and explain your situation to them.. I do hope you get the support you obviously need, good luck and best wishes x

littleone63 profile image
littleone63 in reply to pollyanna

Thankyou, i have always been a proud person and always have tried to not involve social services but i think your right, it's time for me to call them. Are they good?

pollyanna profile image
pollyanna in reply to littleone63

Sometimes our pride needs to move on over and take a back seat. We all need help from time to time, and it sounds like now is one of those times for you. I know social services have a lot of bad press, but they are not all bad! I say with a confidence of an ex ss employee!! I would go out of my way to assist people to get there life back on track! It is about support and not taking over! Please allow them to enable you to get your life together :) and keep us posted as to how things are, take care and good luck x

roobarb profile image

Dear littleone

I am so sorry to hear what a terrible sate you & your friend are in. There is help out there as pollyanna says, & people who will know how to go about claiming the correct benefits for you. As well as getting your home fitted with the correct equipment you need for your disabilities.

It's just so awful that you should have to feel like this. Please hold on to the hope that things will get better. Ring social services, or your GP, or even your MP! Tell them what a state you are in. They will set the ball rolling to get you all the help you need.

You will not end up homeless, but you should have never been left to get to this point of utter desperation.

My thoughts are with you. X

letslaugh63 profile image

I agree you have to take your life back swallow your pride and get the help you and your friend desperately need.where are ? please get in touch with someone today x

nicky1234 profile image

please dont go it alone any longer, you both need help so please take the first step

and phone social services. bless you both xx

littleone63 profile image

Hi, thanks for all your replies but i still feel i can't back down, i don't know why? It's like i'm in a washing machine spinning around and i can't stop. My disabled lady still thinks john major is our leader and thinks the queen mum is still alive. I'm laid here with my phone, i can't physically sit up in my bed, i have my food in my in a childs sandwich box as it is not heavy to hold. I so wish i could have a wash and be clean. My doctor knows my situation but does nothing, it's an health centre. I know i sound like i feel sorry for myself but infact i feel sorry for my disabled lady more. At least i still have my mind. I still can't seem to admit defeat even though i do to you all. How do i ask for help, even muttering the words makes me feel ill inside the pit if my stomach. I just wish i could go back five years when i was silversmithing and making dichroic jewellery as i wanted to start a little business but fate put a stop to that. I really thank all of you, i really do, i will come back and let you know if things change and i swallow my pride! In five years i have never claimed sickness or disabled benefit. I'm not a sponger as people make out. Hope all of you are ok and coping!

littleone63 profile image

You all have made me cry, it is 6.11am and even my tablets won't help me sleep. I feel for all other sufferers in my situation. Thing is, i have never ever thought bad of anyone disabled, i was always a carer, if someone had no face it wouldn't bother me, i accept people as they are. Only thing that scares me are insects! The sitting on the toilet seat though really hurts my spine, someone said about disability aids in my home, this is a private rent and a wheelchair des not fit in this place, there is no room as it is tiny, a mouse would not cope in here. When the ambulance picks me up it takes ages as it is all gravel outside. I filled a village form in and said we were both disabled, not one person has bothered to say hello out of my village.My village is full of rich people thougn, they own all there homes, i think we are the only ones with a private landlord. Thanks for letting me let my inner thoughts out.

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