"Bedroom Tax" and the disabled private rental tenant

My housing benefit has never covered the entire cost of my rent. I have never yet been offered a council property which suits my needs. Taken together these two facts add up to my being "rent poor" for my entire adult life, whether fit enough to work or not. This has knock-on effects. There is a huge catch 22 going on between my care needs, my benefits, social services and housing benefit.

I currently receive lower rate care. I survive with minimal care provided by two volunteers who help me out of the kindness of their hearts. I can't (always) dress myself, cook for myself, clean my own house, bathe myself, manage my medication, my financial transactions or even have a bath without help. I sometimes need help to get to the loo at night, which means that my carers need to stay over. I have reported these facts more than once, have medical evidence which back these claims up. My care needs fluctuate; on my worst days I'm bed-bound, normally I'm housebound. Because I survive with the level of care I'm currently receiving, DLA say I don't qualify for higher rate care. Because I don't qualify for higher rate care, I don't qualify for any help financially towards my "spare" room which my carers sleep in. Because I don't qualify for higher rate care I don't qualify for social services help. Because I don't qualify for social services help, I have to survive on the help I have, which DLA says means I don't qualify for higher rate care.

This means I don't get regular hot meals, regular hot drinks, and I sometimes have to sleep downstairs so that I can make to to the loo. I often sleep in my clothes and it can be up to a week between baths. If I actually had the amount per week coming in that the law says I need to live on I might be able to afford to get someone in privately to help me, but no. I'm short £12 a week. Even if the 'bedroom tax' is abolished, I'll still be in the same position.

The thing is that I don't want to simply survive; shouldn't I be allowed to live at least a little? One hot meal a day and a bath every second day? Clean clothes and the ability to get to a loo when I need one? Why yes, I could use a commode, but how would I empty it? It would have to sit there stinking for up to a week until one of my volunteers came in and emptied it - but that's the only practical solution to any of these care issues that either I or my carers have come up with.

This is the reality of my life in the lap of luxury on benefits. You want my ability to"laze around in bed all day?" You can have it, and bloody welcome, as long as you take my disability too.

I really can't be bothered any more

I came here with the full intention of writing a moving and inspiring blog post about M.E for awareness week. How the research isn't generally looking for a cause of the symptoms. The politics and pharmaceutical and insurance company lobbying demonising millions of real people with a real illness. People who have this real illness that is as debilitating as the illnesses that get all the celebrity endorsements on the awareness campaigns. What do we get? Martine McCutcheon 'curing' her M.E with a fruit juice diet. How we play whack-a-mole with symptoms every day while being labeled scroungers and hypochondriacs. How even social services don't recognise fluctuating care needs for a fluctuating condition which is by its nature not visible when you look at a person who has it. How we've been constantly let down. M.E. CFS, Fibro, CFIDS - all of these diagnoses are deadend dustbins. We are diagnosed with these illnesses, and left to rot.

We're objects of ridicule, "Mental Malingerers", lazy scrounging layabouts - I've been told in comments on this blog that I should stop whining about not getting handouts any more and get a job instead of lazing about in bed all day. I wonder if yet another year, and yet another awareness week will make any difference. Even if Einstein didn't say it; insanity is doing the same thing and expecting a different result. I've watched the calendar turn, blogged for awareness week, and watched the same old same old demonise, marginalise, trivialise from the press.

We can play invisible illness bingo every day; from "but you don't look sick" to "So what's wrong with you, if you don't mind my asking?" From "Oh you just need to get out more." to "Oh my third cousin's neighbour had that, she used magic moon pills from lala land, she's fine now." and "Oh that's not what's really wrong with you, you should get tested for trendyillnesitis, they can cure that." and the killer. "Oh that's all in your head. You can think yourself well if you think positive. Lets do some crystal herb homeopathetic acupressure." I'm trivialising things that have lost me relationships, family and friends through the long sick-years.

You see there's no cure. Imagine that you wake up tomorrow feeling like shit, and you don't get better. Months go by and you get a diagnosis and put on treatment protocols that don't cure you, and in some cases make the illness worse. Meanwhile very few people actually believe you're ill, the popular press and comedians can rip the piss out of you and your illness and you can't complain. No defamation laws prevent them from telling the world that people with a particular illness aren't really ill. There are days when you wake up not remembering your own name through the fog of pain and cognitive dysfunction, and there are the darker days when you wonder if they might be telling the truth; that it's your own head putting you through this hell.

I can't be bothered trying to explain it any more, the ones who matter know it's real, those that don't understand don't matter.

Which are you?