Goodbye to All That, New Year Navel Gazing, and PhD or Poundland

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Okay, Christmas is over, people, lets get on.

Diane Arbus, Xmas Tree in a Living Room, Levittown, L.I., 1963

It’s December 29th! Lets do a little Navel Gazing!

Year on year I don’t really seem to make many advances migraine wise. Yet I wouldn’t go back. So… something is good. Or better. Maybe increased insight is worth having even if the net result on migraines is actually nil. I do feel like I am getting somewhere. And little things matter to me. And if you can take pleasure in small things then life is a LOT sweeter. Frinstance, yesterday I blogged about Die Antwoord which is something I have been meaning to do for weeks, and changed up my tumblr theme – again something long overdue. AND I changed all my links on this blog, twitter, and tumblr to #2c749e which is a lovely blue – replacing a hot orange (so last year, my dear). I haven’t done a tumblr post for a long while – I should rectify that – but I am pleased to say that at some point wordpress decided to Xpost to tumblr, and my wp posts have been reblogged several times, which means possibly new readers – fingers crossed!

I also hoovered and mopped, which left me with a bad back, a difficult night and a migraine in the  morning, but with Ten gone the sitting room is READY for me to do stuff. The stuff I have to or want to do includes boring paperwork (urgent), painting (haven’t done any in a little while, need to get into a rhythm with that) and AND and a PhD application.

That’s right, you read it here first. Or second, I’m pretty sure I have mentioned it somewhere already. Anyway, I was in conversation with someone on twitter, and he was promoting a funded PhD. I said it wasn’t quite my thing, but I’d share and he ended up encouraging me to apply. The deadline is end of January, so I will have to look sharp. Thing is, that I had really given up the idea of doing such a thing some time ago but in practical terms it could be the very get out of jail free card that I need. At any rate, I will write a proposal and see if it flies.

So, the way they put it was about ‘Creating the Sustainable Digital City’ which, from the blurb looked like it would be rather about politics and hardware.

It’s being hosted by the department of “The Built Environment” at Heriot Watt university. Not somewhere I would naturally think of applying. I like that I have a month to get it together, though. Plenty time, but a short enough deadline to get me moving on it. If what I come up with loses steam quickly I will know it’s not for me – and same goes if they reject it. If, however, I got in, not only would I not have to live in Edinburgh, but I wouldn’t need to stay put at all, and I could go all global and travelly. Always assuming I got through the next firey hoop – applying for AHRC funding for a grant. It wouldn’t be do-able otherwise, and the great thing about being on a grant for three years is I could get out of this hell hole of being on benefits during a Tory hate campaign against the disabled.

Whether I would be up to the job is a whole other question. PhDs seem to make people ill and mental, but given that I am starting from that point things could either be just fine or go horribly wrong quite quickly. A better option than waiting to be sent to work at Poundland, anyway.

what i think you think it’s like being me, lace fence, and more workfare shenanigans

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Migraine Awareness Month#26: “From the Outside Looking In.” Write about what you think your family, friends an others think a day in life, a day with Migraine disease, is like.

it’s a sliding scale, i think. but after a decade of not even being able to work i think most of my friends that are left pretty much get it. a lot of the time when people suggest i do things that are out of the question for some reason or other it is less because they don’t get that i don’t have the energy or that the activity is full of triggers or whatever, and way more that they find it as hard as i do to think that this is forever. i mean, most people’s ailments have the good grace to come along, get worse, get better and go away. mine don’t. and i don’t even get worse and die! i just go on and on without the sort of quality of life they would like for me.

it may help that i blog. because that’s a fair indicator of what i can and can’t do. although i tend not to bang on about it, so it’s more of a question of omission. and people are not psychic, if i don’t tell them they can’t know.

but there’s another thing. i actually don’t really like to admit i can’t do something or i am really suffering, because i want to keep the friends i have, and i don’t want to bum them out, so i keep it brief. just as i work on acceptance – not wallowing and trying to resist denial – it is up to me to point people in the right direction about what is going on for me. all this, without wanting to be defined by my illness. not an easy job. for any of us.

“National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.”

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check this out! isn’t it lovely?


Joep Verhoeven

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this is good. she’s suing the govt for taking her away from her voluntary work in a museum which really could have got her work, to make her work for free in poundland.

it’s good because if she wins it will create precedent, which is how UK law works. the workfare thing here is punitive and contrary. we need to get test cases to court. if it fails she should take it to european court. my feeling is, right now, that we need external bodies to intercede on our behalf. if our own courts won’t do it then we do have recourse to european law.

we certainly can’t expect our government to protect us from the crisis that bankers have got us in to. maybe i should write to the queen?

my dream day and my worst fear

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Migraine Awareness Month #9:  “Day Dream Believer.” Describe your dream day – without a Migraine to hold you back. 

the thing is, that if i haven’t already got a migraine, then doing practically anything could trigger one. so my magical dream day is less about having a migraine than having a free pass on triggers.

first up, swimming. most exercise is triggery, and i really miss it. the exercise i most hanker for is swimming. i like swimming in a pool, but LOVE swimming in the sea. so a really dreamy day would involve sea swimming. a free pass on the traveling as well, then. so a sunny day on the beach with swimming and ALL THE SUN. and while we are there, let me have whatever food and drink and whenever instead of having to stick to mealtimes and make sure that i don’t carb out.

between the chronic migraines and the fibro, i never do evenings. i am always pooped and in bed by mid evening. this means i don’t get to do dinners with friends. i also don’t get to go to theatre or anything either (too long sitting, even if i did go in the afternoon) but i think i will stick with my dream day as it is, largely because if everything is happening in the right direction and i don’t taunt the triggers it actually can happen – more or less.

my favourite beach is this one

it’s in north norfolk. sometimes my friend lottie get’s a few days at a house there owned by her family, and i have had bits of my dream day scattered over various trips, and i have had really nice times there mainly because lottie truly understands the restrictions i live with. we had a lovely vacation there with other friends nicky and kit, who cooked up a storm of an evening, and i could join in and then just go upstairs to bed.

i’d always rather have a fantasy that i can more or less fulfill. a kind of ‘my life, but better’ rather than something i can never ever have. where’s the fun in that?

ooh! i’d have red wine with dinner, though!

“National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.”

Barbara Kruger

In a time of universal deceit – telling the truth is a revolutionary act.
George Orwell

nobody said i had to write about migraine all month. and usually i don’t bang on about migraine or fibro. this is a place where these things don’t define me. so why now and why???

now, i know that we all have battles on our hands. the every day ones about looking normal and feeling like hell. in the US i know that sometimes you can’t have the triptans you need because your health insurance limits how many you can have in a month. lots of things, all the time.

here in the UK those of us who are unable to work and who have previously been awarded benefits on that basis are now living in fear of being forced to work. i can’t even begin to explain it all here. happily, i have already blogged about it a fair bit. and have made a page on the subject of WORKFARE. stop by if you are interested, or if you are in the UK and facing this problem – there are a couple of links there you might find useful.

libraries, poppet, art stuff, colourbox, scottish referendum, gardening, instapaper, tea, workfare, cooking.

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1. soooo… ANGRY at this. sneaky FUCKERS. and not in a good way. what body of people moves *things* at 2am when they feel comfortable and legal and whatnot with their decision to do it?

almost particularly when those *things* are BOOKS. BOOKS! people! stripping a whole library at 2am. and now i am really going to swear.

MOTHER FUCKING FUCKERS.

2. poppet all better, and taking the best seat in the house (well, garden).

harraw!

she’s doing well. i think the ear with the stitches in it might get itchy at some point and i will have to put the lampshade back on but she’s mostly NAKED and happily putting it all behind her. and yesterday we went out with mark and charlie, so she had lots of bull terrier fun with her young luvvahboy.

3. these look like some groovy sites for sharing your creative journey. not being active in the visual art world i hadn’t heard of most of them, but i have seen the colour one before. big fan of colour/color.

4. play some more of that colourbox stuff again!

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5. so much for 2012. you’d think it was the END OF TIME the way people are going on about it. there will be life after the olympics, and there is a whole nother EVENT to look forward to. or, at least, there is for those that are interested in these things. september 2014 heralds a referendum on scottish independence. the debates are starting now. you can read a bit about it here if you’ve a passing interest.

IN THE 70’S THERE WAS A REFERENDUM FOR A SCOTTISH PARLIAMENT. ONE OF THEIR SLOGANS WAS “IT’S OOR OIL”.

i don’t live there any more, as you know, so will not get a vote. on the one hand, it will be bad for england if scotland becomes independent, at least in the short term, because MANY more people vote tory here. on the other hand it may radicalize people even more than the occupy/banking crisis/workfare stuff is doing already. and if scotland did become a kind of english speaking scandinavian country that would be kind of cool.

for them.

however, there is another side of NATIONALISM. as amy from lucy’s football  likes to say “what have we learned?” well, we have learned that nationalism can get a bit RACIST. yes it can.

think ON, scotland.

6. i’ve had my mum visiting, for the past few days, from scotland. we’ve been having a heatwave and have spent most of the time in the garden. this has meant that i have started FIDDLING with things. i’ve moved plants around, de-strangled some of the things i’d like to live, and banished the ferny thing to the bit where there is just london clay and pebbles. nothing else will grow there anyway, and it looks nice. you just can’t let it ENCROACH is all.

ferny thing. nice enough, and welcome in the pebbly clay, but a bit of an encroacher.

most things that i have moved have seemed happier where i have put them. all except a really sad poppy which hung it’s head tragically post move. it may rally overnight or it may not. i’ve not moved a poppy before.

i’ve put in some of my neighbour’s herb robert, and am excited about it. you can have the leaf tips as a tea.

7. you know what i like? instapaper. can’t remember where it was recommended, but i have been using it lots. it’s great for people who end up with more tabs than they can even see on their desktop. with it, you can just save a page for later IN THE CLOUD and happily close some tabs. it’s like having a good memory. most pleasing.

8. here’s something for our ken;

it isn’t credited on tumblr, which usually means i won’t post, but it’s too good not to show at least my blogging homies. 21,059 reblogs, as well! i wonder if the OP even knows that… no hits on tineye either.

9. you may notice that i yammer on about ‘workfare’ now and then. if you are not in the uk you might think ‘what on earth is she banging on about?’ especially if you don’t realize i am seriously unable to work for a living. here is a guardian column in which the writer covers quite a few of the things that make me worried and ballistic by turns.

10. sorry to whoever i nicked this from on twitter, but here is a hilarious tumblr pipcooksthebooks where the eponymous pip shows us the difference between the ‘showroom’ version of the dish and what it actually looks like when a normal person tries it. you have to click through. i’m not even going to try to find my favourite.

more workfare shenanigans

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i’ve just added a WORKFARE page to my blog. since this is now a part of my life i had to decide whether to blog about it and risk who knows what in sanctions or to keep it to myself and risk a hernia.

reader, LETS GO! FUCK WORKFARE AND THE HORSE IT RODE IN ON! because imma blog the fuck out of it.

so, where were we? yes. this morning i decided to make an introductory page about it which is basically cut and pasted from last week’s protected blog post, so if you read that you are up to speed. if you didn’t here’s the link to the page. you can find it any time, though, because it’s right up there at the top with ‘about the author’ etc. i will be updating it as i go along.

well, monday i had to go to another “work focused interview”. i was super anxious, since i had decided that i didn’t want to sign their incomprehensible paperwork, and i had printed out one of these consent withdrawl letters to hand to my ‘advisor’. my stomach was in knots about it, but the thing is that DSS (department of social security) paperwork is all kitemarked by the plain english campaign, so whether you like what you are signing or not it is at least unambiguous. if i have to have something explained to me  verbally i don’t like to sign it, because what, then, are you signing?

the consent withdrawl letter i used is all DWP (department of work and pensions) policy quoted verbatim. it’s written in legal english, which is difficult but not ambiguous. i was worried that it would mark me out as ‘anti’ and make for tense times at these mandatory meetings.

ten walked me up there, and i went in to the crowded open plan office. the bloke i see is nice enough, and clearly does want to help me, but it would seem that he is woefully ill informed about LOTS of things. lots and lots of things. let me be an education for him.

so, i explained to him that it was nothing personal, but that i declined to fill in the forms he had given me. i gave him the letter and a copy for me to read and sign, and unsurprisingly, he was disinclined to sign it right then and there. however, happily, he appeared to not take it personally, and the rest of our meeting went ok within the bounds of as ‘ok’ as it could ever be.

in fact, i told him two things about not signing the paperwork. i told him that it was unclear and that i didn’t want to sign it, and that legally i didn’t have to sign it, and i also told him that due to my heightened anxiety levels i no longer considered myself mentally competent (mental health act 1982, if i had to quote it, though i didn’t – i feel i need back up for EVERYTHING now). it seems that St Anne’s Hospital has lost my referral from the Complex Care team to the next team i will be handled by, for people with chronic health conditions, so if i want my medication looked at i will either have to wait til the original psych comes back from holiday and re-sends his referral, go to emergency, or get my GP to review my meds. this all seems too complicated for me to think about, so am currently just gritting my teeth.

at the top of the meeting he asked me how i was. obviously, in a normal situation i simply lie and tell people i am fine because that is the answer to “how are you?” however, it behooves me to tell the truth in this instance, since i need him to understand that i am very much not fine and expect to be not fine for the foreseeable future.

now, since receiving the letter about the changeover from Incapacity Benefit to Employment and Support Allowance, and my categorization in the work related activity group i have read it rather closely. obvs, i didn’t read it properly when i first got it, since i was OFF MY FACE on antipsychotics at the time. i tend not to read letters. i didn’t even open the original form, and had to phone them to ask for clemency because i hadn’t returned it during their time frame. guess what? that’s part of mental ill health. i was too busy having suicidal ideations to open letters, sorry.

anyway, now that i have read it more closely i have noted a sentence on page 4 which reads;

“You are required to attend and take part in work-focused interviews as a condition of continuing to recieve benefit. If you do not attend or participate in a work-focused interview your benefit may be reduced.

However work-focused interviews may be deferred if there are good reasons as to why it is not appropriate or of no assistance at that time.

i showed my advisor this, and HE HAD NEVER SEEN IT BEFORE and he asked me if he could take a copy. OF COURSE he could have a copy. the better informed he really is the better for me. it would appear his masters don’t want him knowing that he needn’t continue with someone who is clearly not well enough to attend interviews (this is, after all, how the organization makes it’s money, processing the sick and poor for profit).

of course, i have been thinking about what i would do if they took my benefit off me. unfortunately, my work based fantasies are just that, fantasies. if  i were well enough there are any number of things i could do. my thought was that i could do murals for people, because if i could do them then it wouldn’t take many to replace the ESA money. so, i mentioned this to him. OOH! he loved that. it was like i had thrown him a bone. i think it is evident to him that i would not be able to manage anything like a regular job, so i expect he was expecting a bit of an uphill interview.

if you do 30 hours a week paid work you can claim working tax credit, he explained. (that would be an income of half what i get on ESA, but of course, better than nothing, i suppose.) it would get me off ESA which would be a win for statistics, and more importantly for his company, a big fat cheque for getting me ‘into work’. he explained that i didn’t really need to be working 30 hours, that lying on the sofa thinking about my project would count as working. HA! if there really was a job called ‘lying on the couch and thinking’ i would be fully employed!

he printed off a ream of paperwork about self employment for me to take home. he is completely in denial about what i have told him is my physical state. bless him. he is also extremely uninformed about how working tax credit works. he did tell me that i would have to be making £70 a week. if i could make £70 a week doing anything i would have signed off so i could be free of this farce and the duress it puts me under.

i have looked up the regulations for working tax credit. as it happens, if you are considered ‘disabled’ the weekly hours go down to 16. still more than i could manage, but does he not know that? and according to their paperwork i could claim it, were i actually going to do this, while claiming EAS.

anyway, it’s all in the realm of myth right now. if i were well enough to work i would be happy to go to the job centre where the career advisors are more well informed about guidelines if i wanted to be self employed or if i was entitled to working tax credit. if i were well enough to work, though, i’d much rather get a job. self employment is, in reality, incredibly hard work and involves a LOT more than 30 hours of work a week. the stress alone would put me back to square one.

sorry for banging on! unfortunately, dear readers, i will likely be blogging about this for some time to come. i hope that what information i glean can help others in my situation. go forth! be well! and if you are dealing with this abomination yourself, YOU ARE NOT ALONE.

inspiring quotes and difficult times

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a LOT of words in this tumblr elaine4queen.tumblr.com/day/2012/04/27

many, many quotes. good ones, too.

life, death, existence. writing, art, cookery. it’s all there.


from letters of note

and now my saved stuff in tumblr is all image based, and it is talking to me in a different way. having done a couple of extemporized posts, a cat one, a dog one, and now ALL THE WORDS new threads suggest themselves. and i am under the 1000 mark of saved stuff.

there are more animals, so i might do an animal post. then what is left? a lot of colour, for one thing. and quite a lot of flowers. in the past i have wondered what i would do if i RAN OUT. all i can say is that no matter how much i blog i never do run out. sometimes i stop posting for a while, but there is never an end to the tumblring. never an end.

what else is new? well, you might have heard that in this country there is a government drive to get all the cripples and crazy persons into work. this, at a time of mass unemployment. go figure. the thing is, though, for me, there is a disconnect. clearly i don’t want to be forced onto the jam factory floor (or, more likely, now, the call centre) whereupon to become iller and iller and become pulp to be scooped into a body bag, but neither do i never want to work again.

yesterday’s interview at the orwellian named job centre i talked to a nice lady whose job it is to find me employment. after talking to me for an hour she had nothing to suggest other than i rest and recuperate as well as i could. she was contracted to tell me, however, that i had to attend a workfare interview ‘voluntarily’ or else it would become mandatory. i don’t really see what is voluntary about something that becomes mandatory, but maybe i am missing something? anyway, i agreed. a nice young chap phoned me today for an initial consult, and i may have rather bewildered him. well he did ask what i would like to do for a living. so i did tell him i wanted to be an anatomical pathology technician. to be honest, if i got handed that on a plate (no pun intended) i would do my level best not to fuck it up. obviously, i am far too ill right now to do a full time job, but i do have improvements sometimes, there are new drugs, new combinations of drugs. you never know.

so i have to go and have an interview with him next week. he is a nice enough guy, and is doing a teacher training course, so he had a grasp of what my cv was about.

there is really nothing to be done. if i am forced to work full time i will have to turn up until the point of failure, and then my employer will have to call an ambulance. i can’t stand for more than 10 minutes without pain, or sit for more than an hour without moving around. i can’t walk around for more than an hour without lying down. i can’t cope with fluorescent lighting, confusing sounds, or strong smells. there is doubtless work i could do, but the conditions of work itself make it unlikely. when i went to tutu’s funeral the other week i spent an hour getting there, an hour and a half there, and an hour getting back. 10 minutes into going home i was horribly fatigued and in pain, and ten had to guide me home. it took me about five days to recover to my usual level of unwellness. i had a veritable jamboree of migraines, diarrhea and deadly fatigue.

i’d love to work, by the way. when i did work i rather defined myself through my career.

you can’t push a river, and if things play out in a way that is impossible for me i will just have to meet them as they arise.

there is nothing to be done.