Monday, December 21, 2009

Mistletoe and Whine

Oxycontin withdrawl continues and a fucking miserable state of affairs it really is. I'm not sure if Oxycontin has been a staunch ally in allowing me to totally delude myself about how much pain I'm really in, or if it's a sneaky conspirator helping to cause the pain. Guess I'll find that answer out when I've finished getting the damn stuff out of my system. Either way it's got to be done as a good 60% of the tablets are still passing through me without any sign of digestion.

That's what I keep telling myself at 5am when the puking or pooing wakes me up to a world of pain. The upside being that I'm a dead set to play E.T if Spielberg ever does a remake. It'd be the one time being a short arse gimp only able to sway from one foot to the other would be a selling point. I shan't hold my breath though, I don't think Steven's got my number.

So yeah. Lots of early morning unpleasantness. This whole thing would be alot easier if it'd let me get some decent kip. And if the police didn't insist on raiding so many previously reliable cannabis suppliers. That's just mean. I'd make a complaint but that'd take far too much effort so I'll just continue fantasising about pain control and the glory days of readily available, affordable weed for now.*

The pain relief will have to wait until Wednesday when I see the locum consultant. I'm hoping it's the same locum rheumatologist I've seen previously as he's excellent, but who knows. After all, why on earth would politicians want to put actual money into a specialty they can't spell and don't understand? Even if there's tons of people on sickness benefits because of things like lower back pain or fibromyalgia. Far more fun to trash talk the NHS and pretend it's fucked anyway, while crossing polyclinic builders palm's with silver.

Mood swings seem to be a particularly fun part of Oxycontin withdrawl. I'm either a grumpy, psycho bitch or a weeping wreck. Adverts seem to be particularly good at bringing out the weeping wreck, but anything'll suffice.

Hopefully it'll all be over soon enough. By the end of today I should be down to the 10mg dose, three times a day**. I hope it's not too difficult to make the jump from that point in 10mg increments because it's not possible to split the tablets in anyway without turning them into Hillbilly Heroin. Oxycontin still isn't used much in the UK, so doctors don't have much experience prescribing or withdrawing people from it. Anecdotally I've heard it's an absolute bitch of a drug to get out of your system, but at least Christmas will serve a valid purpose this year. I would like to be clean and clear of Oxycontin by the time the Best Man arrives to celebrate New Year....though he may not recognise me without my head down a toilet!




*It may or may not restore your faith in human nature to hear that dealers seem to have some sense of honour about people relying on cannabis for medical reasons. People have gone considerably out of their way not just to try and source some cannabis for me, but to source it a a reasonable price.
**Yes, Oxycontin is supposed to be taken twice a day for continual pain relief. That never worked for me so I've always taken it 3 times daily.

Thursday, December 17, 2009

Rarer than hen's teeth..

"Think horses not zebras" is a saying taught to medical students. Basically, like Occam's razor it is to remind them that the simplest explanation is the most likely explanation, and that tying yourself into knots chasing down rare conditions is usually a waste of time. The conditions considered 'too rare' to deserve proper medical education are legion, so most are skimmed over during medical school.

Ehlers Danlos Syndrome
has it's own special place amongst the 'rare disorders doctors are told they're unlikely to ever see'. My EDS diagnosis completely bewildered an anaesthetist friend of mine, who, despite only ever having seen the old fashioned photos of stretchy skin and hyperextended joints whilst at medical school had always known I had EDS as apparently 'you can tell just by looking'. He's right, you can, and how I fell through the diagnostic net no-one will ever know. It was so obvious he just assumed I knew too and didn't want to talk about it.

Yesterday, after receiving repeated messages from my Sky box that the sky would fall in and stop sending me magical telly box pictures if I didn't get a new viewing card I finally got round to investigating the digital switchover help scheme. There is a point to this, honest...I'm just struggling to get my oxycontin deprived brain to remember what it was. Um. Oh yeah...

So, I phoned the digital people and spoke to a very nice lady. As I'd managed to call the wrong number we went all round the houses before getting to the point that I have a disability and so qualify for some forms of help from this scheme. Leaving aside the merits of tax payer funded digital TV equipment I'm very grateful that a nice man is going to turn up on Monday and sort it all out. Technology is not generally considered to be my friend as the Best Man would happily tell you all.

Whilst I was explaining the disability issues to the nice helpline lady* she mentioned it sounded like something her young niece had. We chatted some more and it transpired that she has two nieces with varyingly severe degrees of hypermobility. The hypermobility had been noticed by doctors, but they were continuing down the misinformed route many doctors do and insisting it wasn't the source of the endless injuries and pain these children were having. I was able to point the lady in the direction of relevant medical information and advise her how to get the children referred to the bendy specialists.

Hopefully these children will be spared the more disabling aspects of Hypermobility Syndrome/Ehlers Danlos Syndrome by early diagnosis and lifestyle management. It would be wonderful to think that the NHS and benefits system would also be spared the burden caused by the lack of timely diagnosis but until medical education about 'rare' conditions improves that is sadly unlikely.




*BTW, the digital switchover people may be causing mass confusion with the changeover but they seem to have installed a fairly impressive level of disability awareness amongst their staff.




Raising Doctors, the beta version

Via The Junior Doctor, Raising Doctors, the Beta version written by Edwin Leap. This was originally a lecture delivered to new doctors but is great advice for all of us.

Wednesday, December 16, 2009

When disabled isn't disabled enough

One of the biggest difficulties with benefits for disabled people is that the application process demands a style of answer typically not relevant to the life of the disabled person. Many disabled people make a deliberate choice to be positive about their lives, to achieve everything they possibly can and so find it incredibly difficult to fill out forms in the style demanded by the DWP.

There is no room in the system for that kind of attitude, as 10 year old Devon and her mum are now finding out. Devon has lost her entitlement to Disability Living Allowance based upon a school report praising her achievements.

Wednesday, December 09, 2009

By the pricking of my thumbs, something wicked this way comes...

Earlier this year rumours started to circulate about New Labour plans to abolish the two main disability benefits, Attendance Allowance (AA) and Disability Living Allowance (DLA).

AA is a benefit for those over 65, DLA for those under 65. As these are benefits intended soley to cover the additional costs of living with a disability they are, sensibly and rightly non means tested. The qualifying conditions which all recipients must meet, have no respect for details such as financial income so neither does the benefit.


DLA and AA are difficult benefits to claim, with lengthy, personally intrusive questions to answer, but make an incalculable difference to the lives of disabled people. The prospect of removing these benefits strikes fear into the hearts of disabled people and those who care for them, but the prospect of removing these financial benefits and replacing them with 'support' from local authorities is far, far worse.

Local authorities have been rationing care for quite some time, meaning only those with the most critical or substantial care needs will qualify for support. As an example, my own care needs are classified as moderate by my local authority, which conveniently excuses them from having to provide any form of support.

A report in The Times gives an insight into the lengths that local authorities will go to to avoid the financial responsibility of meeting care needs. Mr Justice Hedley, was so appalled at two local authorities refusals to accept responsibility for the care needs of a severely ill child that he



"found it necessary to adjourn briefly so as to ensure that no wholly improper judicial observations escaped my lips"



I'm never cyncial....but if local authorities are already able to get away with refusing to fund vital care packages, then how better to save money than by removing the financial benefits of DLA and AA, to 'replace' them with local authority decided support which the local authorities can conveniently simply refuse to provide.


Only a politician would be stupid enough not to realise that the NHS will completely collapse within 24 hours of this 'clever' way to save funds. Unless of course that's what they want too?






*The DWP have unfortunately moved the link to the pdf report stating an overall 0.5% fraud rate for successful DLA claims, which as an overall percentage seems pretty low to me.

Tuesday, December 08, 2009

Bog Off-Exhibit 19 So near and yet so far...

This Bog Off was sent in by AbsolutQueer photography. AbsolutQueer reports that overall the toilet was clean and well laid out, with only the pull for help cord being wrapped up out of the way. Sounds pretty good considering the standard of most Bog Offs.
Except this was the only toilet available....and it was situated at the bottom of a flight of stairs, with no available lift! Really, you couldn't make this stuff up.



Thanks AbsolutQueer!

If anyone would like to contribute, please email your Bog Off photos and comments to benefitscroungingscum@hotmail.co.uk.



Sunday, December 06, 2009

ATOS flouts Disability Discrimination Act

via Don't get mad, get equal treatment

It won't come as a surprise to many disabled people to hear that ATOS* are flouting Disability Discrimination law by insisting the £60, 000 pa they pay for doctors to assess benefits claimants** only go to doctors who are free of General Medical Council Conditions. There are various reasons for having conditions imposed on your General Medical Council registration but a significant number of doctors on that register have conditions imposed solely because of their disability.

That means unconditional registration excludes a significant number of disabled doctors. As having a disability does not materially affect your ability to assess people for state benefits the advert cannot specify candidates without a disability, without falling foul of the Disability Discrimination Act.

Not that I'm in any way cyncial...but employing doctors with disabilities to assess other people with disabilities might be thought of as particularly sensible if your priority is to ensure those benefits are correctly assigned. However, if your main priority is to deny those benefits, best keep those pesky cripples well away.

*ATOS are contracted by the DWP to provide assessments relating to certain benefits.
**A common misconception is that an individual's NHS employed GP provides this medical assessment. Whilst the individual's GP is typically asked for information by way of a form, the actual medical assessments are carried out by doctors (usually GP's) employed by ATOS.

Saturday, December 05, 2009

Essential Reading

'More lies about the NHS' written by an actual NHS doctor rather than a Daily Fail god it hurts to even typejournalist in the same sentence as that particular brand of bog roll!

Friday, December 04, 2009

The birds and the birds


One of my many 'oh so special' characteristics is that I don't like to ope
n letters. I could tell you about the dislocating fingers and paper cuts I get when I do actually open letters, but that would be a feeble excuse. I just don't like to open letters. They invariably contain things I was happier not knowing about.

This builds up to the point 3 or 4 times a year when I'm drowning in unopened post and guilt trip myself into dealing with it. This may also be the reason I'm in trouble with the student loans people...but don't tell them that. Besides it's a proper phobia according to this article so I'm declaring it as part of my overall specialness. Hmm, wonder if I can get DLA and a care package for it too?


Back to today, when instead of dealing with 3 significantly sized boxes of unopened mail I am writing a blog post. Procrastination is a skill all should have, and after very nearly managing to shred a cheque I've been looking for for a month...I feel it's probably safer to stay away from the paperwork. Well, that and the accidentally getting high in the middle of the afternoon with Convent Girl, but I still blame the phobia.

The accidental highness came about because it's been a busy day. Yes, ok only by my standards, but still, it counts as an excuse. The weather earlier was relatively balmy and the tide high so armed with my spacker cup I set off to reacquaint myself with the bench. It was all very nice, waves lapping and birds making bird noises. As they do. The birds today were of the spectacularly fat variety, but being a tweeter rather than twitcher I can't come up with any better bird observation than to comment on their weight. Maybe it's all the chips Convent Girl and I fed them o
ver the summer?


So back to the birds and the tea. It was so nice I decided to go for a mini death walk. Death walking stopped before I had the pig death flu, when I had to phone Roland to come and rescue me in the police car. It took him less minutes than it perhaps should have done to reach me, but still considerably more than it took to drive me the few meters back to my flat. I'm not sure exactly what my neighbours think of me, but plenty of them commented on my being escorted into my flat in the firm grip of a large policeman.

Fun though flashy blue lights may be, they aren't the most practical of routes home, so death walking was put on hold for a while. The enforced rest at The Best Man's seems to have done me the world of good as today I managed to reach the shelter Roland rescued me from, see my all time favourite graffitti* and get myself safely home. All this on less than a third of my usual dosage of Oxycontin!**

*What's not to like about a declared love for Islam above a swastika?
**Which might just have something to do with the excessive daytime stonedness!

Weblog Awards 2009

Thank you very much to Veronica who has nominated Benefit Scrounging Scum in the best medical/health issues category in the 2009 Weblog Awards.

Unfortunately whilst I may be the best faller overer around, I am not the best technical person. It's taken me a week to work out how to link to the nomination.

Hopefully it won't take me another week to figure out what I'm supposed to ask you lot to do!


Updated: A week and a little help from my friends. Thanks! @The_MorningStar

Tuesday, December 01, 2009

Bog Off-The 'so good it makes my knickers wet' exhibit



As we all know by now, I am properly obsessed with disabled toilets. The good, the bad, the ugly...and that's just having a reputation for taking photos of the damn things wherever I go!


So, to find such a gem amongst the typically dirty and smelly, often lacking basic facilities I usually document was very exciting even if I am beginning to worry I've developed a particularly disturbing fetish!


Still, fetish or no, I have to take a moment to bow down to the complete awesomeness of this toilet. It was so clean I could literally have worshipped face first on the floor. Yes, you've guessed it, this was the god of disabled toilets. Clean, spacious, nice smelling and phenomenally well equipped. Unless of course you're visually impaired...as I'm guessing whoever designed the toilet didn't realise visually impaired people might need such facilities. Yup, it really was that blindingly clean and white in there, and that really is the white pull for help cord you can just about see against the white of the white tiles! But, that's the only real criticism I can make, and as this is such a very special knicker wetting toilet I feel compelled to return to singing it's praises.


It was massive....really massive
in a way you can't tell from the photos. Oodles of room to manoeuvre the biggest wheelchair with no worries about crushing an attendant's toes. Joy of joys, there was even a shower...with a purpose built seat for washing with or without assistance. Even better, the shower and seat were within transfer distance of the toilet itself. Sink at the right height, even a correctly sited mirror for my lipgloss. I could live in that toilet!



There was even a full sized, electronically controlled adult changing facility. Whilst I'd heard rumour such things existed it was the first time I've seen this particular piece of equipment outside of a hospital environment...and even in hospitals they can be rarer than unicorn horns.


This epitome of toilet luxu
ry was found in the assistance centre at Copenhagen Airport. I was so shocked I needed to sit down! Fortunately the assistance centre was an oasis of quiet and calm (other than the very entertaining 4 year old girl playing at being a mouse under the table) with comfortable, cushioned arm chairs and internet access. Having had the journey from hell up until that point I could cheerfully have spent the night there...20 minutes was not long enough.


Well done and thank you Copenhagen Airport, I've not been so excited in years!






















PS: If someone can explain to me how loads of overexcited middle class, able bodied, white people flying into Copenhagen and all using their mobile phones to take photos of the 'environmentally friendly' electronic climate change billboard adverts is going to save the planet I'd be ever so grateful thank you!

PPS: Please forgive the crap photo quality. I was still recovering from a near death Swedish coach trip. I know. Sweden. Near death. Don't really go hand in hand...or so we think!