Of Beds and Bedrooms

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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.

ALL THE FLOODS, a Petition for Botox for Migraine, and a Couple of Silly Photos

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I don’t know what is wrong with me, really I don’t.

Our local councillor sent out an email saying there MIGHT be some flooding…. It so happens that I was advised when I took this place that insurance companies wouldn’t touch it with a barge pole (haha! BOOM! BOOM!) so if I wanted contents insurance I’d have to get the council’s own offering. I wasn’t bothered.  Nevertheless, I subscribed to the environment agency’s twitter feed and watched the river swell, and the birds hang on to the quickening flow with quiet determination. What kind of nutcase gets jealous when she thusly reads that in Oxfordshire they are giving away sandbags because of the flooding there?

twisteddoodles.com

I find my reaction quite odd. I mean, it’s not like the garden is flooded and the next step will be the ruination of my flooring and imminent danger to electricals. The river is still 4 foot down the canal bank that’s on this side, and water would have to fill the towpath and climb up the garden before any of that would happen, so it’s not that I feel underprepared. I just don’t think this place will ever really flood, is all. BUT I WANT MY DAMN SANDBAGS!

Sometimes I have to admit that there is something idiotic about desire.

***

Now onto the serious stuff. Pretty please sign the petition for chronic migraine sufferers to get botox quickety quick

” It is approved by NICE for the treatment of them. However, very few people are trained to do it on the NHS and you first have to get a referral from your PCT which can take 18 weeks, you add that to NHS delays and you’re looking at a very long time before you get treatment.

The treatment should not have to be commissioned in this way. The National Migraine Centre in London is happy to provide the treatment to patients fitting the strict critera but you still have to wait around 18 weeks if not longer to get the PCT to commission this charity to do it. This is ridiculous for those who have tried everything else and need the treatment for this debilitating disorder. It should not be so difficult to get this illness treated when a specialist says that you need it.”

am on the list, and I do meet the criteria, but as it stands there is no way I will get my next go-round by the time this one wears off. We are sickeningly close to getting our needs met, and yet it’s always a hair’s breadth away…

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I do try to only repost credited pictures. Sometimes looking for someone to credit has unintended consequences. Like, I wanted to share this picture with you to prove I am not entirely curmudgeonly about the festive season

so I clicked through a couple of tumblrs til i found where it might possibly live, still no credit but LOOK! I found this photo

which made me LAUGH LIKE A DRAIN.

So, whatever, copyright blah blah, but LOOK! A pelican nipping a cat’s head!

Pantone Emerald, Reyjkavik’s Mayor, a Dose of Botox, and M’new Venture…

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News just in from my tumblr feed…

The pantone colour of the year 2013 is going to be this;

what can i say? i hate it.

There have been some nice colours over the past few years. Turquoise was fabulous, I always like an orange, but greens, well, for me, greens are problematic. I like ‘natural’ greens of all hues, but there are some greens that just make me feel ill.

NEWS JUST IN! Ten thinks this is a good colour for 2013! He won’t tell me WHY though, because he says I’ll just blog it. (well, YES!)

Sometimes colours of the year get ignored, and sometimes they become very popular. There was a whole turqoise interiors blog that year, but I’ve not seen any evidence of this year’s dark orange being be-themed. If you are in my camp and find greens tricky, but you end up with STUFF that colour, then may I advise a bright light orange accessory or two to even things up?

You’re very welcome. I know. I am WISE.

***
Something you may not have heard of is that not only have Iceland solved their banking problem by telling the banks to fuck off, but also Reykjavik now has a COMEDIAN for mayor!

So sensible. I suggested we move there, but Ten says it’s too cold. This is their campaign song, for their party “Best”.

In which they make many promises, like ‘free towels in swimming pools’ which they plan not to keep. Just like a real party.

***

So, yesterday I went to get a FREE go round of botox. I’d been a bit super ill in the run up because I’ve been ramping up one of my medications, and every time I do that it makes me have a period which gives me hormonal migraines which are the worst, and that’s been the past week or 10 days or so.

giles again. putting a pin in it.

I was offered the free gig originally in return for speaking to some doctors, but in the event I didn’t have to, and I just had to ‘be the patient’ for Giles while he demonstrated where the injections go. It was somewhat more painful because he did it a lot more slowly because of the telling, but still, it was basically me being handed £600 effectively, so I can’t complain. I didn’t feel as well and as elated as I did last time round, because I am still reeling from upping the meds, but I do look forward to a less-worse winter on the back of it. I noticed he didn’t have the picture of his hens as a background on his desktop. A small concession to the visiting docs? I don’t know. He wasn’t any less Giles-y.

So, yeah, hence I haven’t been blogging lately. I have, however, been doing a little donkey work for my new VENTURE with my friend Al. We are putting together some courses for professional development – MBSR (Mindfulness Based Stress Reduction) and mindfulness skills for the workplace, particularly teaching and learning, since that’s our background, but if we can get any gigs in hospitals or the like training for compassion fatigue then that’d be awesomesauce. The site isn’t public yet, since it’s still very much under construction, but I am already posting quite a bit on our facebook page Training With Awareness. Come on over and LIKE it, so I get to see what happens when a page gets 30 likes. Something magical, I expect.

A Day Out with My Brain

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To the trains!

Today was a most intrepid day. I had Bowen lady followed by a neurology appointment.

to the trains!

Ten came with me, because, you know, traveling. The first half of the day was easy enough, but by the time we’d done it all I needed serious supervision to get home.

I’d wondered what he was going to do for the hour I was having the Bowen treatment, but I needn’t have worried, he’d already hooked himself up for a hang out. Turns out he has a friend who runs an arty bookshop just round the corner. We were a bit early so I got to meet her. She was very nice and advised me about selling my signed Damien Hirst book, which might be worth a bob or two.

I’d thought we should eat in Bethnal Green, but I felt too nervous, and wanted to be as near the hospital as possible in case of EVENTS and being late and everything. I am hardly ever late for anything. I get too nervous. Then I am stupidly early and have to hang around.

So it was a happy thing that Ten remembered the cafe at the Mary Ward Centre, where I taught once upon a time, so we went there because it couldn’t really be nearer the hospital without sitting in it’s lap.

***

This hospital is the National Hospital for Neurology and Neurosurgery so you’d think all the doctors there would be pretty fancy. But no! It turns out my doctor was “only” a neurologist, and I would have to go to the extra super fancy Headache Clinic there to get the botox, but get it I very well may – ON THE NHS  no less. And at £600 every three months to get it privately  it’s rather worth the wait to get it free. Eight months waiting list to see them, she reckoned. But she also told me some useful stuff to do in the meantime which would mean I wouldn’t have to mess around having more appointments than strictly necessary before getting the good stuff (assuming they see fit to give it me).

Whereas our good friend Giles Elrington at the National Migraine Clinic (very worth the name drop as it turns out) will give you botox, if he sees fit, whatever drugs you are taking, this clinic want you to be off as much as possible, and will even have you in to get you off your drugs, so assiduous are they.

remember giles? he does as he sees fit. you can tell, can’t you?

Now, it has never been suggested that I come off the preventative pain killer I take (naproxen) before, but this is what she says they would want me to do. She also said I should go up on my mood stabilizer – this being a project I had put on hold for the winter because every time I go up a dose I have at least a week of ricochet headaches before it settles down, possibly because it has an effect on hormones, so these may be ‘period migraines’ of sorts.

See, the migraine clinic is a private charity – hence the cost, and also hence I could get the botox treatment before it was available on the NHS in London. So what I am thinking is that if i get Dr Elrington to hit me up with the good shit for one more time then I can a) feel a bit better at a time of the year when I traditionally start going on the skids pain wise, and b) get a kick start on the drug withdrawl.

I have done drug withdrawl many times, and I do know not to go cold turkey, but even so, it’s a hard thing to do when not all your pain is rebound pain. Because, dur, you are going to have ALL THE PAIN and it will be bad and it will continue. So having something to leven that with will be most welcome and certainly worth £600.

***
Addendum

Just as an aside, really, I have to tell you I was super nervous about seeing the neuro. Doctors have a lot of power, and I’d never met her before, so I was worried about that, and also because my brain isn’t what it might be, and because I have had this for so very long, I certainly can’t remember all the drugs I have tried. Anyway it was all fine, she was kind. And impressed with my name dropping (thanks, Giles, for being so very name droppable).

As we approached the hospital I started feeling a little hysterical. I started wanting to shout “TAKE MY BRAIN OUT!”

When we got to reception there was a man working there with a huge bulging forehead.

einstein’s brain. thank goodness someone had the foresight to steal it! (click through for more einstein’s brain goodness)

I found myself having a kind of tourettish urge to shout about his massive frontal lobe. My internal head shouting continued after that at various intervals (I never gave in to it – I have SUCH restraint) up to and including when the neuro lady said that under some circumstance or other I would have “less” headaches.

Gentle reader, it took all my strength not to shout “FEWER”.

on mute

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in an argument between the mind and the body the body will ultimately win. FACT.

damien hirst

was it really only last week that i had the botox injections (31 of them) for my migraine? okay, it was 10 days ago, and it feels like a lifetime, because after i had them i went straight out and started living. i went on holiday – i traveled, i drank wine, i stayed up late, i missed meals, i said “yes” without thinking. it was WONDERFUL.

when i got home i carried on – i went long walks, i saw friends, i went swimming. i ignored the headaches, the neck pain, the stomach pain, the leg pains as best i could, i medicated and i blanked the information feeding back from my body – help! help! it squealed. and i blithely ignored “it”. my body. talking to me.

the swimming on friday was when i finally acknowledged that i had to slow down. before botox i could swim for five minutes at a time and pacing was a matter of restraint. this time round i had to break in the middle of the 5 mins and i could not do more than 10 in all. i had hit the wall.

rewind, then, my friend, to when dr elrington SAID you had to take things easy. you had to pace things. and start again.

by yesterday i had decided that i really must do a LOT less. and build it up. i could have told myself that. so why didn’t i?

it’s simple. i was being human.

it’s so counter intuitive to live without hope, without plans, to stop and rest before feeling tired, to stop altogether when allotted activity has been done. to recognize constraints. to respect limitations.

Ron Gilad – Mirror, 2011

happily for me, i have my buddha skills to turn to. because the visit to the land of hope and energy had me job hunting, house hunting, dreaming, and planning. all the while denying that – yes, i was still taking triptans. i was still flaring up all over. the botox gave me an inch and i had taken a mile without stopping to think about how, after the push, comes the crash.

i had a brief glimpse of who i could be, who, perhaps, i would be… if if if. if only. and then i came back to reality. just like all those people who play the lottery do every week. the truth is that the botox is good. i doubt i could have swung into denial for over a week if it wasn’t. i am still taking triptans, but i am responding to them better, i still get aches and pains but i can exercise more, i still get exhausted, but the fatigue doesn’t lay me so low or last so long and has less disastrous consequences. it’s good, it just isn’t that good. the magic bullet of fable is just that. and why should it be more, really? i suppose having paid £600 for it i want £600 worth of well. and i am getting it, it’s just not perfection.

and there are other avenues to explore – i’m not finished yet. dr elrington said that i could up my dose of venlafaxine (effexor). he looked it up, and it seems that the max dose is 5x what i am taking. my migraines went from daily to approx 3 weeks in 4 when i started taking it, so there is margin for treating it as a serious contender for migraine relief. for my part, i have to jiggle that with an antipsychotic to ward off mania, but knowing about risks like that is half the battle. (i take quetiapine these days, for anyone who is interested in the particulars).

i’m kind of sad that it is probably unrealistic to start looking for work just yet, but in all honesty i need to get generally fitter to be a contender as such. i have three weeks of lifts to the swimming pool with stephen before he goes on holiday, and my intention is to join the gym they are building nearby, so i can work on specific things, like strengthening my back.

back to life, back to reality…