help and support : Morning all, I just don’t know... - LUPUS UK

LUPUS UK

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help and support

M0wnt profile image
6 Replies

Morning all,

I just don’t know where to turn for support. I have basically left the house about 15 times in the last year due to my herniated disc , various spinal degeneration rubbish, I have lupus, fibromyalgia, and various other autoimmune diseases that I can’t spell 🤣. I am waiting for the 2nd full assessment for Autism aswell. and I have only managed my mental health all 48 years of my life by exercising and being out in nature.

My mental health has taken such a dip as I can’t get out. My husband has given up his full time job to help me more, and he is trying to run a new handyman business but this isn’t making enough money to pay bills and it’s theee months of mortgage arrears and other bills. We get UC and PIP (half the amount). But we are still struggling. This sounds awful but all I can think of is getting out the house each day. I have crutches but this is still limited on one day a week going out. As it affects me too much walking. I have seen a secondhand Ice Trike which I have tried and tested and they are for people with disabilities. It is going to cost £1000 but I have no way of saving this money when I can’t pay bills. I am so desperate to improve my life as I cannot go on another year like I have. I have the mental health team tomorrow as I am really struggling to see point in my life right now if it is going to be like this!!!

Does anyone know if there are any grants available or any other support I can get. I was an OT and I know that the social won’t help me as they would just provide a wheelchair and I am not doing that.

I am sorry if my message is low and blunt but I really struggle to communicate. I read all your messages and there are so many days I sit here wanting to talk…..moan…..but I feel like I can’t do this as it just feels like self pity when it comes from me. But when I read all your messages it makes it real, and I know I am not alone.

thank you all.

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M0wnt profile image
M0wnt
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6 Replies
MrsMarigold profile image
MrsMarigold

Hi. I’m so sorry for all your troubles and being so overwhelmed. I’m in the US so I do not know what services are available to you. If getting outside helps you perhaps you will reconsider a wheelchair? I’ve used one before. I can’t say I like the new normal of my life sometimes but I’d rather be in a push chair than not enjoy the outside. Best to you.

Jerg profile image
Jerg in reply to MrsMarigold

So sorry to hear this Have you tried your local council mobility team?

They maybe able to help as well as your GP and consultant

Good luck

CecilyParsley profile image
CecilyParsley

Hi MOwnt, I am so very sorry that things seem so overwhelming for you. I totally understand the feeling of wanting to get out of the house, since I had to stop driving I only get out once a week too and it gets you down.

Firstly have you had an assessment by the adult Social Services team ( not the Mental Health Team)? Your husband can also get a carers assessment which will open up other services fir you such as getting. Direct Payments to pay for a personal assistant. I did this seven years ago and it changed my life so much for the better. My husband now doesn’t have to take me to every hospital appointment so it helps him, I get to go to pottery once a week and occasional to the cinema or out to lunch.

With regards your benefits, from what you say you should definitely be getting the higher rate of PIP. Did you complete the application yourself? If so you might want to get Benefits and work. It costs around £20 for the year but really helps you to focus on what you need to put on the form. If you cannot face it your local Citizen’s Advice Bureau can help you .

Your husband should apply for Carers Allowance.

As you worked prior to getting ill you should be entitled to Contributions based ESA.

There is a Charity which supplies mobility scooters.

Mobility Trust

PO Box 7044

Tadley

Hampshire

RG24 4PL

I hope that your appointment with the Mental Health Team goes well for you and that at least something in what I have said helps you a little xxx

CavendishCool profile image
CavendishCool in reply to CecilyParsley

What a flippin fantastic star you are. Beautifully informative and well written. Thanks for sharing 🙏

CecilyParsley profile image
CecilyParsley in reply to CavendishCool

You are so welcome xxx

CavendishCool profile image
CavendishCool

Seriously, I would feel so much more positive for your answer. I had to do all what you suggested to secure support for my cognitively impaired brother which took hours, days, weeks, months to sort out what he might be able to receive. Things still need tweaking, but they're a whole lot better. You however are a one-stop shop! 🙏

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