Of Beds and Bedrooms

Being somewhat criptastic. Or spoony. Disabled? Certainly I have the dread Invisible Illness. I have spent the past couple of months in bed. I have also spent this morning, in a short window of relative wellness writing to my MP and encouraging others to do so too, on the subject of the reviled Bedroom Tax. For those who don’t know about this it’s a measure apparently designed to help families move into under occupied public housing -which seems fair, right? The way it works is by docking Housing Benefit for low income or non working people so that they can’t afford to live in their homes. This has had two main effects that I can see – first of all, claimants who have what is designated as a ‘spare room’ are pushed to move into private rented accommodation at whatever cost and inconvenience that entails only to have to claim a much higher rent for less space. The second thing is that this affects families with disabled members disproportionately, since they often have extra room for various reasons (storing equipment, quiet area for Autistic kid, bedroom for someone who might otherwise share a bedroom but can’t because of illness) and their home is often specially adapted for disabilities (ramp, grab rails, non slip flooring). I am not personally affected by this ‘bedroom tax’ but as a disabled person of some description I have been affected by other measures this Govt has taken in it’s war against the poor and disadvantaged, and I don’t like it.

I can’t bring myself to write a straight political post, it’s not in me. And there are plenty out there who are doing so anyway (here and in more detail here. If you are in the UK and your MP voted against repealing this punitive and pointless legislation or, maybe even worse in a way, if they were Labour and they failed to bother voting then do please write to your MP here. It’s the work of moments, really easy, and if there is ever going to be any point in voting for these lazy half wits again we need to remind them who’s actually boss. WE ARE.

The bedroom tax debate full list of Labour non-voters, all 47 of them:
Diane Abbott, MP for Hackney North and Stoke Newington
Debbie Abrahams, MP for Oldham East and Saddleworth
Bob Ainsworth, MP Coventry North East
Douglas Alexander, MP for Paisley & Renfrewshire South
Jonathan Ashworth, MP for Leicester South
Ed Balls, MP for Morley and Outwood Clp
Hugh Bayley, MP for York Central
David Blunkett, MP for Sheffield, Brightside and Hillsborough
Gordon Brown, MP for Kirkcaldy & Cowdenbeath
Chris Bryant, MP for Rhondda
Ann Coffey, MP for Stockport
Huw Irranca Davies, MP for Ogmore
Geraint Davies, MP for Swansea West
Gloria De Piero, MP for Ashfield
Jim Dobbin, MP for Heywood and Middleton
Frank Dobson, MP for Holborn and St Pancras
Brian Donohoe, MP for Central Ayrshire
Frank Doran, MP for Aberdeen North
Clive Efford, MP for Eltham
Frank Field, MP for Birkenhead
Paul Flynn, MP for Newport West
Mike Gapes, MP for Ilford South
David Hamilton, MP for Midlothian
Margaret Hodge, MP for Barking
George Howarth, MP for Knowsley
Lindsay Hoyle, MP for Chorley
Siân James, MP for Swansea East
Alan Johnson, MP for Kingston upon Hull West and Hessle
Tessa Jowell, MP for Dulwich and West Norwood
Gerald Kaufman, MP for Manchester, Gorton
David Lammy, MP for Tottenham
Ian Lucas, MP for Wrexham
Siobhain McDonagh, MP for Mitcham and Morden
Alan Meale, MP for Gateshead
Meg Munn, MP for Sheffeild, Heeley
Jim Murphy, MP for East Renfrewshire
Pamela Nash, MP for Airdrie and Shotts
Dawn Primarolo, MP for Bristol South
Joan Ruddock, MP for Lewisham, Deptoford
Anas Sarwar, MP for Glasgow Central
John Spellar, MP for Warley
Gerry Sutcliffe, MP for Bradford South
Chuka Umunna, MP for Streatham
Joan Walley, MP for Stoke-on-Trent North
Dave Watts, MP for St Helens North
Alan Whitehead, MP for Southampton, Test
Shaun Woodward, MP for Se Hellens South and Whiston

Here’s what Lib Dem MPs did on Labour’s motion to abolish the #bedroomtax

Absent

ALEXANDER, Danny, Mr
BIRTWISTLE, Gordon, Mr
BROOKE, Annette, Ms
CABLE, Vince, Mr
CLEGG, Nick
CROCKART, Mike
FEATHERSTONE, Lynne, Ms
HUPPERT, Julian, Mr
KENNEDY, Charles, Rt Hon
LAWS, David, Mr
LEECH, John, Mr
LLOYD, Stephen, Mr
MULHOLLAND, Greg, Mr
REID, Alan, Mr
SANDERS, Adrian, Mr
SWALES, Ian, Mr
TEATHER, Sarah, Ms
THORNTON, Mike, Mr
WARD, David, Mr
WILLIAMS, Mark, Mr
WILLIAMS, Roger, Mr
WRIGHT, Simon, Mr

Aye (voted with Labour)

FARRON, Tim, Mr
GEORGE, Andrew, Mr

No

BAKER, Norman, Mr
BEITH, Alan, Rt Hon
BRAKE, Tom
BROWNE, Jeremy, Mr
BRUCE, Malcolm, Rt Hon
BURSTOW, Paul, Mr
BURT, Lorely, Ms
CAMPBELL, Menzies, Rt Hon
CARMICHAEL, Alistair, Mr
DAVEY, Edward, Mr
FOSTER, Don, Mr
GILBERT, Stephen, Mr
HAMES, Duncan, Mr
HARVEY, Nick, Mr
HEATH, David, Mr
HEMMING, John, Mr
HORWOOD, Martin, Mr
HUGHES, Simon, Mr
HUNTER, Mark, Mr
LAMB, Norman, Mr
MOORE, Michael, Mr
MUNT, Tessa, Ms
PUGH, John, Mr
ROGERSON, Dan, Mr
RUSSELL, Bob, Mr
SMITH, Robert, Sir
STUNELL, Andrew, Mr
SWINSON, Jo, Ms
THURSO, John, Mr
WEBB, Steve
WILLIAMS, Stephen, Mr

Teller: Noes
Liberal Democrat WILLOTT, Jenny

***

Now then. Back to the world of me and mine. What’s weird about getting a bit better is that it doesn’t necessarily make a person feel  better. When I first got ill, or should I say when I crashed so hard I could no longer ignore the multiple systems failures occurring around my body and mind, it was really very very bad. I lost all sense of who I was – I’d forged my identity through work and socializing, like many do. I wasn’t in a relationship, didn’t have my dog, was just totally incapacitated. Actually, at first I felt a bit scared, but my brain was really foggy so I didn’t really feel much at all for weeks and weeks, running into months. Also, one of my major things was some really weird stuff going on in my back which had been giving me referred pain – so, in fact, my migraines were at a peep. I was mainly a vegetable. After a few months I took a little job backstage at the Shaftesbury Theatre with the idea that if I was used to working every day over the summer I could go back to teaching that September without too much trouble. Unfortunately, because of one thing and another, a shitty doctor, a prescription med that made me go quite mental, for a start, I missed that moment, and also couldn’t continue with the theatre work either. Between inappropriate care and medication and the continuation and exacerbation of various symptoms I actually got worse. The brain fog faded somewhat, and the back pain was less incapacitating, but the migraines got worse. A lot worse. 16+ a month is the definition of chronic, and I was starting migraines during migraines, and was lucky if I got a handful of days a month not in writhing pain. This went on for several years. A few months ago I started getting Botox treatment, and it is helping a bit. What it does is make a bit of distance between trigger and pain which in turn helps the triptans to work. I am still taking as many most of the time, but I had quite decent breaks in the summer, so when the weather hit, I actually took it pretty badly. I’d got used to being able to write, and Pattern Recognition went down well at October’s Have A Word. And they asked me back for March, so I started writing a second piece. Then the pain and the brain fog and the usual crap kicked in, but I’d had this taste of being normal and I’d liked it. Some of you who know me on facebook saw that I was really beside myself on Monday, because I had a really massive unmanageable day of pain – absolutely nothing by comparison to the endless days and nights I used to get, but now I’m not used to it, and it frightens me half to death. It’s like although the medication is all about giving me a higher pain threshold I actually have a lower tolerance to it when it comes.

Nobody Died

When I first got ill I did have a friend who berated me for having time off, and who tried to persuade me that I should use this strategy or that to get back in the game, but at that time it was impossible anyway, and what I needed to do was to rest. I moved house and learned more about pain management and meditation. Eventually, having become effectively housebound I got a dog. You didn’t know I had a dog? Here’s my dog.

She likes yoghurt, and then, for desert, she likes the carton.

I also acquired a boyfriend, no mean feat when you never really leave the house, and haven’t socialized live for several years. Then I moved house again. The first move was a transfer – my HA accepted I needed to move on health grounds, and I was grateful at first, but then after 8 years I found I wanted something else, and the tech for swapping within public housing had evolved. (Years ago you could swap, but you had to go to the council offices and look at lists – no pictures, no real details, just lists of people usually desperate to get out of whatever version of hell they were living in – nobody at that time moved just because they wanted to.) Now, of course, it’s all online. You can upload pictures, you can set up some limited search parameters, and you can swap not just because you  have to for work reasons, or because you hate your neighbours, but because you want a change of scene or a different kind of home or locale. It’s quite civilized really. I wanted somewhere quieter, and I got it. But what I wasn’t expecting was to totally fall through the floor physically. I became unutterably ill after the move. Maybe this is why I am so sympathetic towards people being forced out of their homes. I elected to move, the new place was better for me, I could afford the move, I had no dependants, but even so, the upshot was that I became extra ill on top of my ‘normal’ level of illness, and I had to ask my boyfriend to look after me, look after the dog, do everything, basically. After a few months of spiralling out of control with inadequate health care – zero continuity except for my neuro, and a lot of difficulty getting any comprehension of what my problems and needs were I finally thought “fuck it” and attempted suicide.

As you might imagine, this took some getting over as well. With a massive bolster of psych drugs and a bit of  attention to the physical side of things I got a bit better. I started having the Botox treatment, and began managing a small kind of sustainability of daily routine in my life. If I didn’t have financial support from my family I wouldn’t have managed any of this – and bear in mind both my parents are elderly and pensioners, so taking £500 a quarter for Botox is something that can’t go on forever, but I’m hoping a year’s uninterrupted use will have some overall effect.

So yeah. Yesterday’s vote. Very bad news. Moving house is recognized as being up there with divorce and bereavement in terms of stress, and I only had my own illness to contend with, and I didn’t have financial issues or children to deal with and I did have support. Imagine any number of permutations where you have extra stress on you and you’re being forced to move out of accommodation that does work for you into accommodation you will never be able to afford on your own, might be less easy to get to work from, you might have to have your kids change schools, you, your partner or your kids might have sickness or disability issues that can’t hope to be addressed in private accommodation and you have a glimpse of why the Bedroom Tax has got so far under my skin.