Now Wait for Last Year

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…was the first Philip K Dick book I ever read. Kenny McBeth lent it to me. I was somewhere between 14 and 16 years old, and had never read science fiction before.

This seems as good a time as any to break it to you that I am neither going to give you a round up of last year, nor am I going to tell you what I’m planning for next. No. We do enough time travelling as it is. Lets take a while to stare out the window.

My current view. Lovely, isn’t it?

And what a lovely view it is and has been for the past week and a bit. Julie generously gave us her house for a fortnight while she Xmassed and New Yeared up in Scotland, and I have spent an inordinate amount of time staring out this window. Or less staring and more gazing. It has been a very literal change of scenery.

Also good for staring/gazing at is fire. There is an open fire in the sitting room and Julie had left us logs and kindling.

This is not a stock photograph. IT’S A REAL FIRE!

I used to know a fireperson. I say ‘fireperson’ advisedly because she was a lady fireman. And this was years ago, and even now, you don’t get many of those kicking about. I didn’t know her well but I found myself sitting next to her at a party once and decided to tell her about a house fire I’d seen in San Francisco. She was, and very well may still be a very quiet woman, but she was suddenly VERY interested. Her immediate question was “How many engines?”

Here’s a pro storytelling tip. Try and notice shit. This is my worst quality in story telling skills – I have a dreadful memory and no eye for those sort of details. I was far too busy watching a big building MADE OF WOOD go up in flames to count fire engines, but her question made me realize that would have been a good thing to have noticed, too.

***

We did NOTHING for NYE. Not unless you count going to see a flat, walking on the beach, getting underwear and shoe soaked on the way home, spending the avo with Collins and Collins, two of our Brighton Besties, and being in bed by 8, listening to The Midwich Cuckoos on iPlayer til about 10 when I zonked out and Ten left me to it to go commune with the Hackspace via hyperspace.

***

The evening before we’d had a few people over and the Gorgeous Gregorie brought over all sorts of bakery.

Gregorie CLAIMS he is a ‘shop girl’ but really he is a BAKER (Well, REALLY he has a show where he does Judy Garland’s audio diaries)

My ‘cookery’ involved doing things like putting a lot of pretzels in a bowl with chocolate peanuts. DON’T JUDGE ME.

Do you think I should teach cookery? Maybe I should. The world needs to know all about chocolate peanuts and pretzels

Alice told travelling yarns, and at one point Chim and Ten took the dogs out and I demonstrated how I get Pops totes excited about going out through the medium of whispering and saying key words. Gregorie, who is proud to be ‘Bri’ish’ (he’s French) was appalled.

Anyway, that was our social event. I literally invited people to come at 7 and leave at 10, which is, in fact, what they did.

I take my bedtime seriously, yo!

***

So, back to yesterday. The flat we went to see involved going past Julie’s first Brighton house. Much as I like the blue, her house was known as ‘The Pink House’ so it was kind of sad to see a change of colour.

Don’t it make my pink house blue?

The Pink House parties were legendary back in the day. I believe the neighbours all pretty much loathed her. Not just for the prodigious partying but also for the fact that she punched a hole in her roof and built a balcony which, due to a mixture of the height of the building and the location of the house on the brow of that bit of hill, looked down over everyone else’s gardens.

The flat we saw was very small and a serious fixer upper, but the location was perfect, and also there was a bonus of a shared well kept garden. For the win, but we have to wait for him to see the Camden flat for a possible three way swap. Tenterhooks!

We took the route avoiding the worst of the hill, something I’m making my business to do, since the whole place is rather more aerobic than I am used to. Passing the trees I mentioned in m’last post we spotted a notice about the flotsam trees.

You can clicky through to the website of ONCA gallery and find out ALL THE THINGS

When I shared the post on fb, Trill told me that they were there to raise consciousness about the rubbish on the beach. Depending on what you are reading this on you might not be able to read the text, but the three trees worth of flotsam was collected in one day by one person.

***

Today we start getting ready to go home. Julie gets back on Friday, and we have appointments and stuff to get on with in London, so we’ll need to get on. It’s been lovely here, the time has flown.

THANK YOU JULIE!!! SORRY ABOUT MELTING THE PAINT ON YOUR SUGAR JAR BY PUTTING IT IN THE DISH WASHER!

And finally…

Bob found a sponge and brought it all the way home.

Poppet is entirely confused by these sponges. I think she thinks they should be edible, I also think they seem a bit like salted soft toys, which, putting it that way, I can see the appeal. At any rate, she brought this one all the way back to the house and wouldn’t let go of it til we were indoors and Ten picked it out of her maw.

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.

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.

Flip Flop Tan, A Visit to Epping Forest, and The Imminent Scaffolding

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I wish I could like autumn more. I mean, I do like it in theory, but my body doesn’t. I’d come off preventative pain killers and was doing really well til the weather hit, and then I realized that wasn’t going to happen. If I could work out how to manage it financially I’d look into moving somewhere where the weather was basically UK summer most of the time, then I might even be able to work. I was stunned at how well I was when I was in Spain, earlier.

proudly prehensile… and a flip flop tan, to boot!

Also, I am saying a sad goodbye to this year’s ‘tan’. I do know that most people wouldn’t count this as a tan as such, but if you compare the blue lines where my flip flops have been to the regular flesh colour on the rest of my feet I think you’ll agree that I’ve done well. I’d just carry on wearing flip flops if I could, but even on a hot day there’s dew on the grass in the morning, and what I have discovered with my summer of the flip flop is that it’s not the cold that’ll get you, it’s damp. Any amount of moisture makes flip flop wearing untenable. I even wore my flip flops to Epping forest the other day without major incident, though they are not ideal off road footwear.

Multitasky Ian (feat Cam)

No, Poppet.

After my flurry of visits abroad I’d got rather mired in the Tottenham Riviera, and it was great to be asked on a day out to Epping with my friends Ian and Al and Al’s little boy, Cameron. Ian did the driving, and we arrived at the bit where the bikers congregate. I would have liked to have taken some pictures, but, well, bikers. Friendly enough but lets not push it. There’s a little cabin where fried food and hot brown beverages calling themselves ‘tea’ and ‘coffee’ are sold. These are seriously muck, but the bacon sarnies are just the job at fortifying you for a woodland walk. Poppet had a fantastic time eating horse poo and wallowing in stinky water and running about like an idiot. Cameron had his BMX bike with him, so we could walk quite far without Al having to carry him, which has been a feature of our walks thus far. For the past few years Al has actually had to carry both Cam and a bike a fair bit, so it’d just as well he’s a gym bunny.

Al and Ian are the people I see most, and do feature in my “should I move?” scenarios. I’ve been all over the place with the home swapping thing this summer, and I’ve had to wind it down now. Partly because it was taking up too much of my head room, and partly because time is passing, and my window of relative wellness is becoming smaller as we move towards the winter, and November is the scheduled time for the scaffolding to go up, probably for several months, while we get new windows and roofs and they replace our heating systems. This should effectively trash what decor there is here, and so between the unsightliness of the scaff and the likely wreckage indoors I can only see the keenest person looking past all that. So rather than field inquiries over the next while I’ve left the profile hanging with just central Brighton as a preferred swap. It’d take me away from easy striking distance from Al and Ian, but nearly everyone wants to visit Brighton, and of my friends who have bought, most have two bed flats, so I can visit THAT LONDON as they call it, and also reconnect with my Brighton friends. Anyway, we mustn’t hold our breaths, since I’ve rarely had a bite from a Brightonian.

In the meantime, Have A Word is coming closer and closer. I’ve done a bit of writing but must do more. It’s mainly about picking blackberries, but then, what else is there to write about? Hardly anything. Blackberries it is.

Here Comes the Rain Again

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August bank holiday, generally scorchio, as appropriate for the Notting Hill Carnival, and we’ve dived straight into autumn without a thought for due process.

Rainy grey light on the Lea.

Some people don’t care either way.

And what have I been doing since last we met? Well, the usual lot of nothing. I’ve been experimenting with coming off medication, eating my body weight in blackberries, and not getting my Have A Word thing written…

I’ve been picking a few blackers most days when I’ve been out with the dog. It’s always amazing how different really fresh things taste to – well, less fresh things.

Blackberries.

It’s been hot, and I am chronically underslept. The rain brings a certain quiet, but also makes me creaky, so it’s swings and roundabouts health wise.

Have A Word is a thing m’friend Ellis has been doing in Brighton for the past few months – there’s no website as such, just a rolling series of HAW fb pages. It’s a monthly spoken word evening in aid of Sussex Beacon and it’s just gone into profit. Ellis is one of those people who ‘just does’ things. A couple of years ago he picked up a camera and within a few weeks had an exhibition – still showing regularly now. Similarly, he ‘just’ decided to host a spoken word event, and now he ‘just’ does.  I love that. Inspirational!

So, of course, without really thinking about possible consequences I asked if I could do a spot, and now I have fifteen minutes to fill on September 11th. I have *something* written, but not 15 minutes worth of something, and I’ve been quietly panicking away here. I had a couple of false starts, but have settled upon doing a sort of jazzy noodle version of a ‘book report’. It’s not a book review – I am barely talking about the book that kicked me off at all, but I quite like calling it a ‘book report’ because that’s what we did at school. And I was quite good at it. But it’s not really one, it’s just me starting off with some of the elements of a book and noodling off with it. The book in question is Pattern Recognition by William Gibson. My ‘report’ features blackberries quite heavily, which the novel does not. And fashion branding, which the novel does.

In other news I have been looking at swapping flats again… not sure whether it will happen or not, but I’ve seen a few now, and am narrowing down my focus – I’m not in a fit state to be moving just for the sake of it, and the Riviera has it’s plusses. But sometimes I start ‘shopping’ and contact a whole slew of people and then some of them get back to me and I think – did I really think I could move to Kilburn? Was that a thing?

Two current front runners involve a flat just off Brick Lane and one just north of Victoria Park – so, areas I’ve lived in before and not just mad night time digital ramblings. Now I have to write to someone and tell her I was QUITE MAD to think I could move so far away from ‘everything’.

And finally, here’s a GPOY of Pops.

relaxypoo

Down the Sofa of Memory, an Unhappy Birthday, and ALL THE PRESENTS

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Good morrow, my friends! It has been some time since my last confession/blog post due to the rolling migraine situation here at l’hermitage. Which is annoying, because I have so much to tell you about, and I’m sure lots of BRILLIANT ideas will have been lost down the sofa of my piss poor memory. Obviously, I have been doing very little, but I have been thinking a lottle about what I want to do for Have A Word in October… It’s in a proper theatre so there’s the opportunity for projections, props, what have you. It’s nice to consider all these things before probably opting to write something down then, er, read it out.

Never mind! Lets live for today and search the camera for the yesterdays…

First of all, there’s a little catch up from foreign travels before they become too old timey to comment on. It was hard to edit down all the stuff from Paris, and this is a shot I didn’t take until I was already home. It’s from the ‘in flight’ magazine they give you on Eurostar. Well, I don’t think they mean you to take them, but at least I took a whole one, whereas the woman next to me tore pages out, which may or may not have been disappointing for the next traveller. These magazines are kind of meh. But there were a couple of things I wanted to refer to. Here’s one about what the French call a Brazilian.

ticket de metro

What you may need to know is that the Paris Metro ticket’s metallic strip is rather more elegant than the London Tube’s. Not judging, mind. Don’t have one for you to see because modern travellers on the Tube use Oyster cards which don’t have a strip. They have a COMPUTER which is sending INFORMATION about you to the GOVERNMENT (this sentence is dedicated to Amy’s Dad. Click on the side bar and look at virtually any Lucy’s Football post and you’ll see what I mean.) Pictured is the back of a Metro ticket, which I have kept, in the spirit of throwing a coin in a fountain, as a promise of return. Though without genital waxing, thankingyou.

My other thing from down the back of the sofa of time is this little rig featuring a mozzie repellent from Spain. What you may not know is that European plugs are different from UK ones, although, confusingly, we do use adaptors for electric shavers though not much else, so I had one lying around. But it goes uppy downy so I had to find an adaptor that would make it go sidey ways.

con fused

We were eaten ALIVE every night by mozzies and it was only on the eve of the last night that we thought of buying a repellent. This one is basically just citronelle presumably gently warmed up – seems to work here just fine, which is good because we do get the odd mozzie on the Tottenham Costa and I’ve never seen these gizmos on sale. Damned if I was going to leave it behind, though I did miss a trick leaving the garlic. Frankly, it didn’t take me long to wish I had thrown out all my clothes and just stuffed my suitcase with garlic and cheese.

***

Then there was my birthday. Being a monday, and last year having been a proper celebration, perhaps it was always going to be a non event at best, so things were surprisingly festive when Angie Nutt turned up with her balloons on birthday eve…

squeaky bouquet. note ten’s hand ready to restrain poppet from any inquiring bites

On the day lots of people sent me good wishes on the interwebs, and I even got some actual cards, and in the case of the Kirsties presents. One baked good being a hat, and one being a knitted pie.

the pie in question being a fairly accurate rendition of a mason’s pie, traditionally to be found in a scottish chip shop. my mum and her sister used to take them to the swimming pool and put them on the pipes for afterwards, calling them a ‘shivery bite’

the day started off well enough, with strawberries and cream for second breakfast. that’s last year’s present from phillip renshaw in the frame.

However, this perkiness did not last. I got a call from a friend who I chatted happily enough with for a bit, but then he started telling me what I “should” be doing about disability benefits and what I “should” be doing for myself. He meant well, but I started really spiralling while he was talking to me, and ended up saying that I couldn’t cope with the conversation and hanging up. I then went into the bedroom and had a proper howling cry, something which I know flares migraine, but which, for once, I indulged. A visit in the afternoon from Hazel and BJ who bore cake barely lifted me from the gutter, however, and what was worse was that the next morning I woke with the cold toad of depression squatting on my chest.

i saw this in the river and thought it summarised the downfall of my birthday rather well

Lets all sing along with Morrissey…

***

One nice thing that has happened is that I requested a CSI Helsingborg t shirt from my friend Mark whose band it is (of course it’s a BAND, did you think the POLIS are likely to give away their merch?) AND he sent me not one but TWO!

merch from sweden. i am well connected

Naturally, I had to attempt to take a slightly POLIS type photo – but in my half baked style you will just have to imagine a police badge instead of a camera, and while you’re at it de-domesticate the background, oh, and flip reverse the photo so you can read the T shirt. Thanks.

not photoshopped


HEY, YOU, GET OFFA MY CLOUD!

Not to be outdone, Poppet has been acquiring presents, too. Neighbour Paul let her have his dear departed doggy’s toys. Buster had clearly kept his presents nice, but you can see in the picture that Poppet has made a start on ripping the face off one of these already…

not the face!

And lastly in Tales of the Riverbank, we had squatted moorings! Yes. All the excitement here on the Ferry Lane Estate. Obviously, Poppet had to go have a little investigate and made friends with them, and I ended up giving one of them a pair of flip flops. I guessed her shoe size – 5 1/2 – which might sound weird, but that is also my size, so no, I am not about to reveal a foot fetish or a past working in a shoe shop.

squat – tastic

So, that will have to do in the way of a catch up. In the meantime, if that’s still not enough, here’s a tumblr collection for your further edification “elaine4queen.tumblr.com/day/2013/7/05

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.

Write Off Days

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Today is a bit of a write off. I mean, a lot of my days are more or less writes offs, but today I was envisitated (new word, thankyouverymuch, I expect to be invited to be in the OED within weeks) by a couple of chaps keen to paint one of my cupboards against mould. It’s migraine weather anyway here in the UK, with heavy cloud, and extra points scored by house paint means that I headed for my triptans PDQ.

gratuitous picture of poppet eviscerating a plushie

When I first got the Botox injections a few weeks ago I didn’t get much respite because of a long standing neck pain. Once they started tailing off, though, I started my GRAND PLAN of coming off as much medication as humanly possible. Last summer my plan was to just enjoy being pain free (or more or less anyway) for the summer, but this time round it’s all about becoming as strong as possible before the next change of seasons. The botox should allow me to do more stuff without having to take triptans, so when I go on holiday in a coupla weeks I will be swimming every day for a kick off.

The grand plan is all about getting as well as possible on as few drugs as possible. I can’t know if the PhD proposal was successful, but if it was then I need to be well enough to read, think, write, and travel. To do this I think I might try to spend some of the winter abroad, but obvs I can only do that if I get the grant freeing me from UK soil. I know they want the person to start in July, so nowhere near enough time for grant applications, but I might be able to make that work for me by starting off being part time. Given that so few people manage a PhD within 3 years, that can’t be the worst idea, and they can’t expect me to go full time if I don’t get the money to do that.

There are other things too… This flat is kind of tight. I love it here, but I am looking at two bedroom flats to swap with because I’d really like a separate place to work. I know a lot of it will be me looking at books and me looking at a laptop, but I work in a different way when I am writing than most people do. I don’t think linearly and like to print out and look at what I am doing on the floor or on a wall, cut it up, move it around, physically and this takes time and space. I need to be able to go away from it and come back to it, and I don’t want to live with it all the time either. This might not be an issue straight away, but I have started looking anyway. I am also considering modifications of the flat I am already in… after all, it costs a bloody fortune to move if you are not ‘able’ and if you own more than just clothes and books. However, for the right space and location I’d move again for sure.

If I don’t get this PhD I might apply for another. I didn’t set out to apply for one, but if I am well enough to do this kind of a thing, or at least to start it, then I probably should, given the state of the nation… it’s not a great time to be on benefits if there’s an option – and a 9 – 5 certainly isn’t on the cards for me even with Botox.

So there you have it. Nearly finished watching Prison Break, which is all I am up to most of today. Thank goodness for telly.

Mass Obs Me

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Background info.

I am a 50 year old unmarried woman. I live in Tottenham, on the Ferry Lane Estate. I have a garden flat which backs on to the River Lea. I will have lived here two years  come September, having spent the last 20 years in the east end. I have a dog, a rescued staffordshire bull terrier called Poppet. I am not working. I was a lecturer in art and design for 12 years. I became too ill to work 10 years ago. I have fibromyalgia and chronic migraine. I have started having Botox injections for the migraine, and that is partially successful. I am working on reducing medication and have applied to do a PhD. Yesterday I wrote to volunteer to teach meditation on a weekly basis. Botox is not expected to reduce migraine much, but to enable the person to lead a fuller life. I have paid for treatments so far, but my GP is applying to the Primary Care Trust to pay for continued treatments. At £2000 a year, it is quite a lot for a person on a low income to pay. NICE (National Institute for Clinical Excellence) have recommended the treatment, so applying to have it paid for is a bit of a test case.

***

I woke up at about 6. I have just stopped taking Quetiapine so that might be why. I have substituted a melatonin supplement, but I don’t know if it’s helping or not. It’s supposed to be good for migraine, so I’m trying it for three months. I got time release ones, which might have been a mistake, since I don’t mind waking up early, I just mind fighting my duvet for hours before I go to sleep. It’s day two of the new regime. Actually, I did get to sleep easily, but that might have been because I took a diazepam for my aching neck, since that is a precursor to migraine.

Back to today. It’s 8.30 right now, and although I did Mass Observation last year I didn’t even know it was on until I was reading facebook and someone else mentioned it. When I woke up I took my stomach med, to protect myself from subsequent pain killers, then turned the hot blanket on and cuddled my dog and fell back asleep for a bit. Half 7 I got up and made tea for myself and Ten who was sleeping in the other room. I start the day with my emails and facebook, and now we’re going to listen to something on iPlayer and have a little snooze.

10.00 Well, so much for snoozing through the blah blah blah of a R4 offering – we listened to a dramatisation of Sam Pepys’ diary entries about the fire of London. Although I have read it, I didn’t remember all the conspiracy theory stuff – immediately, despite the start of the fire known to be an accident, theories abounded about it being started by the Dutch, the French, and the Papists, along with the year, 1666, being interpreted as the 666 of the apocalypse. Nothing changes, does it? My main memories of reading it were about how he buried his Parmesan cheese in the garden and took some of his possessions to Bethnal Green for safe keeping.

Ten’s gone out now, with the dog, who was extremely patient, considering I usually take her out at half 9. I’ve had my porridge and a coffee, but am exhausted, suddenly, so happily gave the walk up to Ten. I am running my bath, which he will have after me. I will have to have reduced screen time today since my eyes are aching.

12.00 So much for less screen time. I’ve had my bath, but basically spent the past couple of hours looking at twitter and playing WWF (words with friends). Need to dry my hair now and get dressed. Ten’s getting ready to go home. He spends about half the week here.

14.05 Had lunch, bacon, brie, salad leaves, garlic, oil, followed by raspberries, blackberries and cream. Between inactivity with the fibro, tackling the IBS with a low oxalate diet and the medication I am on I have ended up doing the Atkins diet. It’s not cheap, but then again, buying an entire new wardrobe isn’t cheap either. Low carbs suits the migraine, at least. After that I would have liked a lie down but Poppet was wandering round hopefully with a ball in her mouth, and since Ten was leaving I thought I might as well get it done even though it was quite early for an afternoon outing. We went to the park and played. It’s been too hot to play during the day lately, but today is cool and windy. A neighbour got me involved in a dispute he was having with his upstairs neighbour over a BBQ – I had to leave them to it.

Back on the bed now, for a little rest and an episode of Prison Break. I like long series with a long story arc because I can’t always read and don’t have much energy. I also listen to radio plays and audio books a lot, since my eyes often ache, and it’s tricky to watch TV with a migraine, too.

16.00 In between watching parts of episodes I have hoovered the bedroom, emptied the dishwasher, emptied the washing machine and loaded the dryer. I wouldn’t be able to do these sorts of chores all at once, but pacing it with lying down gets me moving around and gives me enough rest in between times.

18.00 I’ve done most of the hoovering. Dying to take medication, my head keeps threatening migraine, but so far so good, today. Next up, I have to make something to eat, then I can take meds.

18.30 Done now. Had the most boring meal that I am eating right now. I don’t have much energy to cook, so keep prawns in the freezer. One pack steamed is enough to get by on as an emergency meal. I am also having some pure cocoa in water as a treat because I feel headachey and sorry for myself. It won’t be long til I ‘officially’ go to bed – but I will have to take the dog on her last pee walk first, and I will leave that as long as possible.

20.00 Dog walked, exhausted, bed.

Sent to the Mass Observation Archive 13/05/2013

ETA Last year’s here.