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.

A Woman of a Certain Rage

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So much to tell you. Not that anything has happened in ‘real life’, since now is very much the winter of my discontent, as it is every year for about 9 months. This needs to be addressed at some point, it’s just not sustainable. But it can’t happen this year, I just have to stay where I am and tough it out. Ill as I am right now, I’m not as bad as I have been, and as I am, here, in my pain and unending uselessness, it amazes me I have survived it at all, year on year on year.

Whatever has happened lately has been what’s happened online.  Over on facebook I’ve become involved in a fundraising event, and made a tumblr site End Of. There’s going to be a proper website very soon, but I got the tumblr up and running within four days of the original idea, and while it is, as Terri might say, ‘quick and dirty’ people seem to like it, and it’s somewhere to collate stuff and put info for the meantime. On the facebook page I got trolled by someone who said tumblr was the Betamax of the online world. I suddenly felt terribly protective of tumblr! Poor tumblr, what have they ever done wrong?

I made this to prompt someone else into doing a ‘proper’ design, or just inspire people to make their own and share pictures of them ‘in the wild’. Only afterwards did I realise I’d done the graphic on a ‘wife beater’.

Anyway, I had to stop engaging with the crazy because s/he was clearly only going to feed off any responses. In a discussion afterwards I was describing myself as a ‘woman of a certain age’ to someone else on the team, and NEARLY wrote RAGE instead.

While I find it fairly easy not to get involved in other people’s anger issues, I’ve got my own to deal with. Again, sort of IRL and sort of not… almost from the get-go anger has been a major topic in my therapy. I say I am irritated by someone, therapist suggests I am angry. I wonder if it can be true that I am so out of touch with my feelings I need someone else to tell me what they are?

In other news, Hyperbole and a Half has been so quiet not because she’s been in a depressive impasse but because she’s been writing & drawing a book. I stupidly got my mum an e-reader last year and I’ve cut off my nose to spite my face because books were the obvious and usual gift idea for her, easy and appreciated. Now she’s gone all virtual it’s really hard to think of what to get her, so this was great festive timing on the part of H&1/2 because it’s a book you could only enjoy on an e-reader if you had full colour. And another good thing is that since my mum is phobic about the internet it will come as an entirely new thing to her. (Though, as well as favourites from her blog, there are new stories as well, so us devotees have something to read before we pack them up as Xmas presents).

Actressy friend, Clare Cathcart is going to be in this play which is so exciting. It’s on for ages and it’s in London so I can probably go to see it, even though there aren’t matinees, so I will have to time myself well to manage it, AND it’s been directed by Kathy Burke who is a total genius. I miss her being on telly, but she says she likes directing better, which is fair enough.

Mind you, my friend Ian is having a house warming tonight, and I’m blogging right now to distract myself from quite severe pain, so even though it’s quite near and I really want to go, the chances are against it.

Again. Need to get myself out of this country for these months in the future.

MASSIVE EFFING BORKDOM.

***

Quickly, before I go, here’s a tumblr collection I made the other day for you elaine4queen.tumblr.com/day/2013/10/30

Il cane innocente, Il giovane Montalbano, e mi sento male

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In ‘my life as a Hanna Barbera cartoon, the dog known as Ms Roberta “Poppet” Bobs stole my sausages the other day while I was answering the door.

piccolo cane innocente

Other dogs have a good line in looking guilty even if it’s just that they are skilled actors, but Pops just looked at the plate in my hand, hypnotised by her own pleasure, while I was telling her off, transparently thinking “Those were good, are there any more?”

She understands when it is in her interest to do so. Ten used to talk about perambulating the animal, but I think she’s sussed that one out, so it’s lucky I’ve become entrenched in The Young Montalbano so now we have a spot of Italian to spice up our linguistic feints.

I have tried watching Montalbano before, with The Snack Thief which I found slow and boring, and not about sausages at all. Whether it is the young handsome actor in the prequel or to do with the writing or the directing I don’t know, but whatever the reason or cunning combination thereof, I am really enjoying this series. I now believe I should be living in Sicily, and a quick glance at the weather forecasts tell me that I am right.

What is less appealing is that the town which plays Vigàta is apparently notorious for crimes against dogs, and for there being a lot of street dogs, for want of a pound. I saw a picture when I looked it up for daydreaming purposes which would curdle your blood. So, mixed reviews, there.

***

In other not unrelated news, I have been abed for a lot of the week. Ten’s been away so I’ve had to do what I’ve had to do, but I’ve rather run aground and today he is doing everything and I am most grateful. While I am unfaithful to him with Salvo he is dealing with the piccolo cane and the shopping and so on. I am so very sluggish and have been absolutely tanking the triptans. I only hope that today’s turn of the full moon sees off this current malaise, because I’m at a terribly low ebb, unable to get on with the writing project, and generally feeling crappy. So, sorry for lack of posts, but this is the reality of life in the hermitage right now.

What is nice is that Ellis has invited me to Have A Word again in March. Lets hope that I am well enough to write something by then… There’s another thing on, in April, again in Brighton, which is probably going to be called END OF, perhaps with some other words appended. It was only cooked up a couple of nights ago by Julie Burchill, and is going to be a fund raiser for a domestic violence charity. The spots are only 3-5 minutes, and I think perhaps it’s not for me, but I am glad to be in on it, it’s a great project. However, I also intend to get up to Scotland in the in just springtime, and I dare say I will need to be realistic about the wellness to travel ratio that I can cope with outside of the high days of June – August. I really do need to work out how to get somewhere warmer for a bit.

30 Things Meme – Invisible Illness Week (Small Life)

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It’s coming up to Invisible Illness Week so here’s my response to the 30 things questionnaire you just clicked through to (well, if you didn’t it’s there anyway, just like the tree that fell in the forest).

just like that

1. The illness I live with is: fibromyalgia and chronic migraine. Some say chicken, some say egg, either way, it’s bodily pain, exhaustion, insomnia, anxiety and severe headaches, lots and lots of headaches.

2. I was diagnosed with it in the year: Not sure. about 8 years ago. Never sure about dates and things. I am supposed to keep a record of all sorts of things, but in reality I am too ill to manage that sort of paperwork.

3. But I had symptoms since: Probably birth. Colic is now seen as a precursor of and a kind of migraine, ‘growing pains’ are now seen as a sign of fibromyalgia. I also suffered headaches as a kid, was put to bed with an asprin and dismissed as ‘attention seeking’. If pain really got you attention, I think I’d have noticed by now, and from my pre-crash experience (about 10 years ago now) I know that there are better and more effective ways to get noticed.

4. The biggest adjustment I’ve had to make is: Having very few choices about anything – from what to eat to where I can go or what I can wear or who I can spend time with. At the moment I am struggling with the fact that I can’t, and haven’t been able to for some time, decorate my home or even put pictures up.

5. Most people assume: I’m ok, I suppose. And that nothing they can do can help and that whatever I am doing is what I want to be doing, and however I have things or do things is how I want them. I remember a visitor being surprised at how few pictures I had up. Rather than ask me why, as a formerly active visual artist and someone who has a huge collection of images in frames, I might not have them on walls, she regaled me with tales of her own decor preferences and activities.

6. The hardest part about mornings are: Mornings are the best time of the day for me but I know that all the spoons will be used up by the time I have eaten and bathed, and if I do do something, go to an appointment, do a task, then I will be paying not just the rest of that day but for several days hence. So I suppose the hardest thing about mornings is knowing that even if I feel okay for a little while it won’t be for long, and I have to get through the day somehow  – and having done so I won’t be any further forward with anything.

7. My favorite medical TV show is: None. I don’t like medical shows. People may think that I am interested in ailments, I’m not. I like murders and comedies.

8. A gadget I couldn’t live without is: My heated blanket.

9. The hardest part about nights are: That if I am awake I will be in pain, and that the night will feel even more endless than the day.

10. Each day I take _approx 10 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried a lot of things. I always listen when people tell me about treatments, because sometimes there might be something that actually helps, but mostly I just feel even more misunderstood and isolated – going to appointments of any sort involves travel and probably being extra ill for several days afterwards, and alternative treatments are costly too, so unless you are going to drive me to the appointment every week and pay for it too, then probably save your breath.

12. If I had to choose between an invisible illness or visible I would choose: Visible. I’d like to have Stigmata, something nice and visual. I used to get nose bleeds a lot, and the level of sympathy was off the scale – DUDES!  Nosebleeds don’t actually hurt!

13. Regarding working and career: I miss working, and I miss financial independence. I miss creating something in the world. I miss the social contact. I miss being an expert at something. I miss having a vocation, an actual reason to get out of bed in the morning.

14. People would be surprised to know: How angry and upset I get – I feel I daren’t express myself a lot of the time, I have few enough friends as it is without alienating them. I know it’s not anyone’s fault that I am unwell, but I do feel like I have to be on my best behaviour all the time – I even try to be bright and breezy on the internet for fear of bumming people out. I only write as much misery as I dare, but I feel much more. And that sense of having to be well behaved is a bit of a burden. Sometimes I do write ‘I feel crap’ on facebook, and I love it that people ‘like’ or say ‘aw’ – it’s amazing how much that helps.

15. The hardest thing to accept about my new reality has been: How little it really matters, and how little there is I can do about it.

16. Something I never thought I could do with my illness that I did was: be of any use to anyone else ever. I love it when I can help someone with something. Especially when it involves something I know or am good at and can still do (not much, admittedly).

17. The commercials about my illness: don’t exist in the UK, thankfully.  I remember saying to a psychiatrist ‘will I be able to do that yoga pose if I take that drug’ – the ad was on the side of a tissue box. What rot. I imagine drug commercials are a lot like sanitary products ads, full of people who are busy doing cartwheels on the beach. I’m glad I am spared seeing them. Mind you, the anger might be quite aerobic.

18. Something I really miss doing since I was diagnosed is: Making plans that have any chance of coming to fruition.

19. It was really hard to have to give up: yoga.

20. A new hobby I have taken up since my diagnosis is: blogging. It can be done from bed, it can be any length, and it needn’t be done at all. No one is let down if I don’t blog for weeks. It doesn’t take materials or much in the way of physical action, all I have to be well enough for to do it is to handle the screen time and string a sentence together, and even then I don’t have to do it all at once.

21. If I could have one day of feeling normal again I would: go swimming.

22. My illness has taught me: compassion.

23. Want to know a secret? One thing people say that gets under my skin is: “Why don’t you get a taxi?” I have never been a big fan of taxi rides, the converations are tiring, and even being in a car in silence with someone I don’t know is tiring. They are too expensive, and they WILL give me travel sickness. If I am not going somewhere because it’s ‘too far’ I’ve already weighed up the logistics.

24. But I love it when people: find a way to include me.

25. My favorite motto, scripture, quote that gets me through tough times is: There isn’t one. No platitude from any quarter can help. Ten and Poppet and the internet people, they help, but sayings and quotes just piss me off.

26. When someone is diagnosed I’d like to tell them: you are entitled to your feelings.  

27. Something that has surprised me about living with an illness is: “I never imagined that so many days would ultimately  make such a small life.”
— Franz Kafka, from “Diaries”

28. The nicest thing someone did for me when I wasn’t feeling well was: Be there. Also, it’s helpful when someone offers me something specific – when you are in pain and maybe your brain isn’t functioning the last thing you want to do is guess what someone is prepared to do for you. Ask “Do you want a cheese sandwich” not “Is there anything I can do for you?” because there is, but I’ll be damned if I can think what it might be, right now even if I am lying here starving.

29. I’m involved with Invisible Illness Week because: Honestly, if I don’t do it no one else is going to do it for me. I am constantly supporting causes, even if it’s only ‘clicktivism’. What is horrible is that even high profile illnesses and disabilities don’t get the kind of support or research they need. Watching Pink Ribbon Inc shows how big companies and individuals spend so much money and effort fundraising without actually helping anyone. 

If a cause like that fails so resolutely, what chance is there for mine?

30. The fact that you read this list makes me feel: perhaps all is not lost. If you did get this far, thank you so much for caring to. I feel like I should apologize for having wasted ten minutes of your time. If you did make it this far, here’s a little tumblr for your trouble – THANK YOU! elaine4queen.tumblr.com/day/2013/8/25

 

A Special Sock, and a Special “Baby”

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Fleeing off my head on the good drugs they give you in hospital, I confided, possibly quite loudly, to my mother, that I would be stealing the socks I’d been dressed with for my operation. They were so comfortable. Everything is so good on the good drugs. They’ve been in my sock drawer ever since, and the other day, sick of a long running calf muscle pain aggravated by the wearing of flip flops, I dug one out and put it on.

seems i got a d- for embolism. or for anti-embolism… it’s not entirely clear

On thursday I posted

i am wearing an embolism sock

well, an ANTI embolism STOCKING if you must know.

it’s very comforting. that’s why i stole it from the hospital.

on Facebook. I got lots of likes and comments, and even a video THUS;

from Ian Dogstar. I had to wonder why he had that one handy…

I’m not big on going to hospital. This was nothing to do with anything I normally have wrong with me, and I can’t even remember how they discovered I had it, but it was a big lump the size of a delicious muffin that was lurking in my abdomen. Only it wasn’t a muffin, and it wasn’t in mah belleh as such. I have forgotten momentarily what these things are called, and in the early days it was mainly “could be cancer”, “won’t be cancer” jerking me around for months. In the end they said it was hardly ever cancerous, this thing but they “liked” to take them out. I guess, if you have a growth that is not going to metastasise then you might very well “like” to take it out – like a magician TADA! and the big lump is GONE!

My take away message about this thing, though, was that it was a sort of evil twin typa bunch of tissue, which quite often had teeth and hair. This got me unreasonably excited, and when I came round from the very very good drugs and spoke to my surgeon my question was not “am I alright?” or any variant on that, but “did it have blonde hair?” (because it’s made of your own genes, so it’s going to be YOUR genes, not some interloper you’ve been having sex with). Fair play to the surgeon, who may have had more important things to do, she told me yes, it had LOVELY LONG blonde hair.

So, I should be blogging for migraine awareness… but I am too ill

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Fittingly, I couldn’t start blogging for Migraine Awareness Month yesterday because I wasn’t well enough. Poppet looks much as I feel, limping along after having hurled herself off a first floor balcony while I was away. She has a little skid mark on her chin.

sunbathing on the bed. that little pink mark on her chin is where she landed after her short flight of the bumblebee.

I still feel bloody awful now, but the life of the chronic is one of more or less getting on with things… though a lot of things fall by the wayside.

Doing a month of themed blogging a propos of somethingorother tends to involve a lot of rules, and as I am on day three of hammering head and horrible medication, I may do this badly or not at all. The good thing about arriving late to the party is that there is an extra prompt to use – the themes offered are usually surprisingly good, but not all are immediately inspiring. Also, it’s like the spoon thing. Good to have something in your back pocket. I am super aware of this right now, since I have been migraining for days, ever since I got back from holiday. Eight days in Spain without using triptans, and, in fact, scaling back preventative meds, too. What is it about being back? Is there some sort of innate residual stress at home? Should I be living somewhere with less weather? Or was I just unlucky with all the sitting? The same amount that I had to do on the way out there, but got away with just being over tired for a day or two? I DON’T KNOW.

This just in; I have worked out one of the reasons/the reason I am so migrainey. When I was on hollybags I stopped taking my ‘mood elevator’ along with my preventative pain killer. Discussing it with Lottie, I agreed that maybe I should take half a dose a day or every other day or whatever to let it peter out so I did that – so to recap, a few days off, then a few days of half, then PERIOD! See, I don’t get periods because of the amazing Mirena coil, which is ever so slightly progeseterone secreting. Meanwhile, however, a lot of medication, including mood drugs, while not prescribed to alter hormones are actually oestrogenic. So, suddenly a period – and the worst migraines. Mystery solved.

Mostly about me, and a bit about Ganesh

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In this interregnum I can only dream.

i rather think i would be better off dreaming poppet’s dreams. my actual dreams tend to be rather anxious, which i don’t think hers are. hers are about snoofling about and chasing things.

The trouble with expecting to be well soon, but not being well now is that there is very little I can actually do. I am walking the dog, eating, pottering about, and spending ridiculous amounts of time on the internet looking on Homeswapper for possible swaps. You’d think that I  would have had enough of moving house after all the horror of last time, and it is a BIT stupid to try and second guess how well I am going to be and what I am going to be doing with all the wellness.

It started with the usual thing of going to Brighton and thinking I must go back on Homeswapper and move here, when, in reality, I think I really just like visiting. Just like lots of other people do. Visiting, and catching up with friends, looking at the sea, thinking how nice it would be to live at the seaside, and then going home again. To my home, which, incidentally is something like 10 meters from a river. A perfectly good river. Anyroads. Anyroads, instead of mooning around searching Brighton, I have been looking within London, and mainly within 5 miles of Shoreditch, which I think we can agree *is* the centre of London now.

The other thing is, though, is that there are quite a few people looking to downsize. I don’t know if this has been spurred by the bedroom tax or not, but there are a good few two, and even three, bedroom properties on. Listen to me! “Properties” like I was an estate agent or something. Anyway, what with the possibility/probability of a PhD in the offing I am becoming rather aware that this flat hasn’t got quite enough elbow room for my liking. The big compromise would be giving up the garden, and even more than that, probably, the river.

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ganesh. never saw a shrink for what happened to his head

You know Ganesh? Well, did you know how he got his head? I didn’t. I assumed that he just came that way, because Hindu stuff is kind of magicky and a god with an elephant’s head seems just as reasonable as all the rest of it. Anyway, it turns out he wasn’t born that way. Probably to the relief of his mother.

When I went to the British Museum the other week, and went on a short tour of discovering just how exquisite my back pain can be, we stopped off at Ganesh and the chap who was giving us the tour told us how he came to be the way he is. It turns out that Shiva had been away for a really long time. And I mean a REALLY long time. His wife probably could have stepped out on him, I mean I guess she had to be pretty special to be married to a top god like that, so she probably could have had as many flings as she liked. And he was away a LONG time. So he comes back and sees this fit young lad hanging around. Rather assuming he was being cuckolded he cut the lad’s head off with a sword. Turns out that he was in fact DRN DRN DRRRRRN!!!!! his own son!

Being a god, he could probably have just put the head back on and everything would have been fine. But in his grief he apparently decided it would be best if the next creature he saw would provide the new head. Happily, considering what other creatures there are in the world, the first sentient being he came across was an elephant. So there you are! Ganesh always had something to talk about at dinner parties. How’s that for a teenage angst story?

***

So, back to me. Thursday I get botoxed again, so I can start attacking the massive list of stuff I have to do. Not least of which is to do some reading and rewriting for the PhD application. And then what? I don’t know. I mean, I have plenty of short term tasks to do, but I am not used to being able to have plans, so this thing about wanting to move again could just be part of wanting control over my life in some way, or it could be the sensible next step, if I am really going to write. I do know that I need a great deal of focus and quite a lot of space to write. I don’t write in a very linear way – I get all my ideas down then I print them off and look at them on the floor and rearrange them like that before editing. One time I gave a paper at a conference which was literally a scroll of sellotaped together sections – but I’d done a rewrite after printing and didn’t have another chance to tidy things up before the conference, so I went in with a piece of paper several feet long.

It is nice having a garden, though. Oh, I don’t know…

The Banality of Evil is alive and well and is represented by ATOS and the UK Govt.

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Okay, call me on it if you like, but we are way beyond Godwin’s Law right here and now. We are in the realm of Hanna Arendt’s ‘Banality of Evil’.

Susan Neiman breaks it down a little here

So, the problem is less that we need to recognize political, and for that matter big business leaders as the sociopaths they very well may be, but that there is a myriad of people who are entirely happy to carry out their cruelty. We now live in an era which splits the wrongdoing into bite sized chunks for different individuals to carry out, so that when you point out that you are not able to do whatever they are demanding of you it is not in their remit to, for instance, assess your disability, just to ensure you find a job.

The way it breaks down for me is the initial assessment form from ATOS the firm who are ‘not’ the govt, just carrying out orders, and from which they deduced that I was capable of being put in the ‘working’ group. These forms are dealt with very quickly, and it would appear that multiple disabilities do not count – my ‘points’ were based on my psychiatric status not fibromyalgia, and not chronic migraine (classed as chronic if you have more than 16 a month, at which point the World Health Organization consider a person to be more disabled than a paraplegic) and without contacting my GP or Consultant Neurologist or Psychiatrist. Nothing against nurses, but if you do get assessed (which I wasn’t) it is carried out by a nurse in a short interview, without reference to any of the hours you have spent with your more qualified GP and your very much more qualified in their specialist area Consultant/s.

THEN to add insult to injury, the govt has commissioned companies to carry out work previously done by specialist career counsellors with appropriate specialist qualifications. Attending a “voluntary” (compulsory) meeting with my unqualified ‘counsellor’, in conversation he told me he was ‘going’ to become qualified, but that he ‘didn’t read’. This may sound snobbish, but how does someone who ‘doesn’t read’ advise someone with two degrees and sundry other qualifications about the best career path for them?

For the past few months I have been left in a state of grace to get on with dealing with my myriad aliments, this being something that I am not even on top of, so how I am supposed to work as well as manage shopping and eating regularly (difficult) my medications (horrendously difficult) and personal care and environment (always a case of catastrophe management) I am not entirely sure. When I was called in for an ESA (Employment Support Allowance, the benefit I am on) group induction (with less than a day’s notice, the advisor phoning from a screened number and when the call was dropped he didn’t even phone me back to tell me which office it was going to be held at) I honestly doubt I would have made it without Ten shepherding me there. I was in full migraine incommunicado. Ten switched the mic on on my phone before I went in, because I wanted to be able to listen to it afterwards, but the sound quality was too poor.

We were herded into a room and told that from April we would be treated as Job Seekers. (Job Seekers have to show that they are applying for jobs and have to account for themselves on a regular basis.) If you do not attend for any reason you will be sanctioned. I get about £90 a week, and I have heard of benefit being cut to £21 a week for protracted periods for non attendance – even if this was because of a hospital appointment. I said that I was awaiting a tribunal to go onto the other version of the EAS which is for people deemed too ill to work. I was told in no uncertain terms that this was not their problem. They are not there to consider your disability, just to find you work. In the same breath they apprised us of their ‘Member Charter’ in which they state that they will treat you with ‘respect’. A respect which does not take into account your disability. What kind of respect might that be?

They were very keen to have us consider self employment. If we sign off and become self employed before April we will get benefits not far off what we get now, for a year. Their great idea for us is to become hairdressers or cleaners from home, or sell Body Shop products from home. This, with no respect for how many people visit us (in my case Ten, Lottie, and my neighbour Stephen and Ian and Al most months, other people less often) or OUR DISABILITY which might prevent us from cleaning, for instance. I used to work as a cleaner, you have to be bloody fit to do a good job, and I only just keep the worst of the physically endangering mess and dirt at bay at home. If you get DLA (another benefit – one I have never managed to get) or are a single parent you can consider yourself self employed if you do 16 hours a week. If not, like me, you should do 30 hours a week. That’d be 5 hours a day six days a week which would be the equivalent of me being accepted onto a space programme or running a marathon. I doubt I could do 5 hours a week. I’ve done considerably less than 5 hours a week setting up the Training With Awareness website, and it’s still quite crap. And I couldn’t have done more.

Evidently the govt wants people off EAS ‘working’ group and into work. Probably they don’t fancy putting us into workfare, since being stretchered out of their partners in crime’s premises wouldn’t look good for them. So we are being funneled into this self employment thing – which, lets face it, is going to fail for most people. Usually when people go self employed they do way more than 40 hours a week (the nominal weekly full time hours in the UK) and a LOT of them fail. This, with money to put in, full energy and ability to focus on something they are probably passionate about. So what’s going to be the reality for ‘us’? We are expected to earn £71 a week – if I could earn £71 a week I’d sign off ffs!

In the “Charter” they claim they provide “a welcoming, comfortable and positive environment” – The strip lights in the windowless room meant that I was glad I was wearing shades, there was no concession to physical disability whatever, and I consider the way they treated me as being about a -3 on “welcoming”. They were irritable, bossy, and disrespectful. Ha! Point two is “We will listen to you and treat you with respect.” Really? They go on to describe themselves as “helpful, polite, and professional at all times”. I was disinclined to communicate with them and spent most of the time in silence. When they asked if any of us had hobbies we could turn into self employed professions, the woman next to me said shyly that she liked to write. She was put firmly in her no mark place!

D’you know what? I’m not going to go through the rest. I expect you can see from this tiny taster the sort of bullshit we are dealing with here.

So what am I going to do? Pretend to be self employed for a year and hope to god something rescues me this time next year? Tough it out and maintain my more or less silent protest? Hoping that I don’t get so financially penalized that I lose my home?

Re the tribunal – the likelihood of the tribunal happening before April is quite slim. One is considered ‘work capable’ until or unless a tribunal overturns such a judgement, but even getting a tribunal has taken over a year. From what I am hearing going from having your appeal processed to actually having a tribunal can take several months.

I guess I’d better have my St Ann’s bag packed. With a copy of Janet Frame’s An Angel at My Table in my bag for added irony? Feeling that a mental hospital is a sanctuary from ordinary unhappiness exacerbated by a slew of people ‘just doing their job’ seems to me quite a good example of ‘the banality of evil’.

Have at it, Godwin, with your Law!

Something Unsaid, and Poppet Kills a Rubber Cat

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I know I said I’d tell you how the thing at Reed went today, but I am too ill and it was too awful.

On the way home Poppet found a rubber cat, so we let her bring it into the garden.

hello, i love you

It didn’t take her long to dispatch it to her satisfaction. She always starts with the face.

innards of foam

We won’t be getting her a feline companion animal any time soon.

Time Passes, Shit Happens, and Poppet is Opportunistic

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Sometimes it doesn’t matter how borked you are, you go ahead and do stuff anyway. Largely speaking, if you spend all day in bed you’ll get more pain anyway. Plus bone loss! As an added treat.

(For anyone not following my gripping life on fb, I fell quite badly on Sunday and now have the classic ‘pain in all 4 quadrants’ AND some. The weirdest thing is the whiplashy thing going on with the muscles at the front of my neck. If I am lying down and want to move my head, I have to do it with my HANDS!)

Also, I suddenly realized TIME IS PASSING and if I want to have a chance at this PhD application I better get my academic boots on, FAST. But I soon found that migraine isn’t a great space to be trying to understand shit from, so I gave up. I hoovered the bedroom and changed the bedding, and Poppet approved.

***

I’ve been listening to this so many times over the past few days that I probably account for at least half of the 2,054,639 listens.

***

It turns out that my loopy listening may have stood me in good stead, since I learned today that I am being hauled in to the workfare farce tomorrow morning. I don’t know how scared I should be… but at least I have BUDDHA SKILLZ in my pocket. As it happens, I had just joined a G+ group “Wildmind” who are doing a 100 days of meditation thing – bit late to the party, but so was someone else, so we decided to buddy each other. What’s been interesting so far is less that it has given me a discipline to meditate every day, because it turns out I pretty much do that anyway, but it’s more like when I blogged for Migraine Awareness Month – writing about your practice, even briefly every day for 100 days is going to make it extra conscious. Plus, the support is nice, particularly because I don’t go to an IRL sangha any more.

Although she is speaking about DLA rather than ESA, this clip gives a fair snap shot without being too miserablist.

So, without further ado, I give you Francesca Martinez