Anyone who has been following my diary knows I’m struggling with a quadruple-whammy because of my benefits situation, my disability, the unsafe and unhealthy property I rent and the lack of available or affordable housing in London.
For those not following the up’s and down’s or are suffering from brain fog and want a recap, here it is:
The story so far…
I have MECFS, a health condition that is relatively new to my life. I’m in the Support Group category of Employment And Support Allowance so I am welfare-reliant. I don’t have additional benefits like Disability Living Allowance or PIP.
I’m single, I do not have a car, I don’t have my own home and I am not eligible for credit because of my benefit status. I don’t have a social worker or a carer either. I live hand to mouth.
A benefit scrounger I am not!
Due to the Coalition cuts to Housing Benefit, known as the Bedroom Tax, I have had to move twice since being ill in order to bring my rental costs under the single person’s housing benefit cap for London of £901.00 pcm. Sounds a lot – trust me, in London it so isn’t.
My current home is damp and cold. It is also heated only by electrical central heating – well – that’s the bits of the flat that has heating.
My kitchen has no central heating at all. My flatmate, the damp has to be regularly cleaned off the walls of my home. I watch the weather forecast like a hawk because once it dips below 10 degrees outside, it becomes a nightmare for me living on the inside.
In winter, when my symptoms are affected by the cold, I can only afford to run my heating for 1 hour daily. That’s fuel poverty, in case you’ve heard of it.
I’ve tried and failed to get alternative housing. No local lettings agencies will accept me on housing benefit unless I can provide a guarantor, or give them 6 months rent up front. Yeah, I’m able to do that, being single and on benefits in the first place!
Finally this year I got so fed up of this situation that I applied for a council home based on medical grounds. I was placed in Band D – that’s the lowest in terms of priority. After supplying medical evidence, that banding didn’t change. I am still in Band D.
Since writing this diary daily I’ve become more and more aware of how serious my housing situation is to my health and well being. It was a part of my life that I thought I couldn’t do anything about and so it was a functional problem . Since writing this diary it has become the priority.
I have one wish, if I could wave a magic wand, I’d be out of this flat and in a snug, warm, cosy, healthy, affordable new home before the end of the summer.
“Universe? Are you listening??”
“I am listening, Lindy. Here’s what I’m going to do to help you. But first you’ve gotta reach out.”
Through the Disability Rights UK website I found and then contacted a local organisation which supports people with disabilities.
Last week someone replied – not from Citizens Advice as my brain-fog addled brain thought it was at the time – and today I had an at-home assessment with them. It took about an hour and has – I think – been a complete game changer.
My advocate, Julie, could very well end up being the best thing that has happened to me all year. I’m cautiously optimistic so we will wait and see.
In our assessment she cut through the crap.
She told me exactly what financial help I’m eligible to receive, will refer me to social services, will explore all options for local housing, will approach housing associations to find out about their referral criteria and will help me get the deposit and rent in advance via a discretionary housing payment at the council as well.
My god, she was amazing!
In the meanwhile I also had people offering me their own, informal advice. This has really has helped me understand not only how important it is to have safe housing when you are unwell with CFS or ME but that there are things you need to know about what the process is like before you set off down a route that could negatively impact on your symptoms.
It’s been tough today. I was tired anyway so I’m going to sign off soon.
I’ll end this ‘on the up’ post by saying that Julie walked into my flat and without even knowing anything about my situation, said:
“Where’s the mould. I don’t mean to be rude, but I can smell it.” It’s good to hear that because when you live with a problem all the time you stop noticing it.
The last thing she said to me was:
“We’re going to find you somewhere else to live. You’ll be out of here by the end of summer.”
I found myself in grateful tears more than once!
This diary is an intro to what happened, I’ll write more from tomorrow.
Right now I’m still processing what was said. It’s so true that finding the right person can make all the difference. I feel better already, well, not better from CFS ME, but much better emotionally.
I do feel more hopeful now and we talked back and forth for long enough for me to trust her and trust her intentions to help me and her knowledge about what to do.
Universe, thank you so much for answering!
© Lindy 2015