Mistletoe and Whine

12/21/2009 09:26:00 am BenefitScroungingScum 15 Comments

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.

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Rarer than hen's teeth..

12/17/2009 11:57:00 am BenefitScroungingScum 2 Comments

"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.




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Raising Doctors, the beta version

12/17/2009 11:21:00 am BenefitScroungingScum 0 Comments

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.

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When disabled isn't disabled enough

12/16/2009 05:15:00 pm BenefitScroungingScum 7 Comments

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.

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New Deal in action

12/13/2009 02:29:00 pm BenefitScroungingScum 1 Comments

The Future Is Uncertain. Another insightful post from Brainblogger.

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

12/09/2009 01:29:00 pm BenefitScroungingScum 3 Comments

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.

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

12/08/2009 11:54:00 am BenefitScroungingScum 6 Comments

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.



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ATOS flouts Disability Discrimination Act

12/06/2009 12:38:00 pm BenefitScroungingScum 4 Comments

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.

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Essential Reading

12/05/2009 11:21:00 am BenefitScroungingScum 10 Comments

'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!

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The birds and the birds

12/04/2009 03:16:00 pm BenefitScroungingScum 7 Comments


One of my many 'oh so special' characteristics is that I don't like to open 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 over 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!

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Weblog Awards 2009

12/04/2009 01:44:00 pm BenefitScroungingScum 2 Comments

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

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

12/01/2009 02:16:00 pm BenefitScroungingScum 4 Comments



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 luxury 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!

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Skyn to Skyn

11/27/2009 02:01:00 pm BenefitScroungingScum 12 Comments

Contraceptives have always been a bit of a sticky issue for me. Being bendy means being much more susceptible to the natural changes in flexibility caused by the female menstrual cycle. Over the years many, many disastrous experiences with various forms of hormonal contraception have left me with no wish to ever try another. An IUD which managed to get itself stuck half in, half out of my cervix a mere 24 hours after being fitted, requiring an unceremonious yanking out in A&E means I'm non too keen to try that option again. Medical opinion on the subject of diaphragms or caps is that due to the weak connective tissue found in Ehlers Danlos Syndrome I don't have the tissue strength to hold one in place properly. What all this really means is that the only realistic option I have for contraception is condoms. It couldn't possibly be that simple though ...to cap it all...I'm too sensitive to latex to use a latex condom.

Until recently there was only one non latex condom readily available, the Durex Avanti. Fortunately for those of us with issues with latex the problem has become much more common, which has led to money and research into the issue. The Avanti did the job it was supposed to, as a safe, reliable condom but it didn't exactly feel great, and the interesting sound effect of 'shagging a crisp packet' never really helped the atmosphere! Durex Avanti's are also incredibly expensive, usually retailing for approximately £7 for 5 condoms. Unlike latex condoms, bags of which are often handed out for free in bars, universities or NHS clinics, if you need non latex condoms the NHS will fund 2 a week, and you'll probably have to travel to a specialist family planning clinic to collect them.

So, just before travelling to see The Best Man I was delighted to spot a new non latex condom in my home town's tiny branch of Boots. Made by Mates and called Skyn I was even happier to see that Skyn are sold in boxes of 12, which were on a buy 2 for £10 deal. That's so many more shags per pound sterling my poor brain can't even work it out!

As we all know, most condoms smell a bit..well, distinctively weird and unmistakably condom like. The first thing you notice about Mates Skyn is that there's no unpleasant smell. They also feel completely different when you handle them. Much more slippery in a comfortable kind of way than a typical latex or latex free condom. The Best Man informs me that Mates Skyn are also a comfortable fit, unlike most condoms which do rather tend to cut off the circulation to sensitive boy bits.

Mates Skyn are made from "Sensoprene which has a completely different structure to normal latex, making it thinner, softer and much more flexible, all with the strength of a latex condom." When using Avanti's I'm used to a background worry that the condom will split, which can be a particular problem in erm, the more petite woman. However, that's not a worry with the Skyn as they just feel more durable and less likely to decide to break open at the slightest hint of pressure. Happily coupled with that increased strength really is increased sensitivity, to the point where you can actually feel the texture and temperature of the other person's skin through the condom. I wouldn't go quite so far as to support the claim by Mates that the condom itself enhances sensation, but it certainly is the closest feeling to wearing nothing I've ever experienced whilst using a condom.

Thanks Mates, you've certainly made me a happy girl!





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For all you doubters...

11/27/2009 12:02:00 pm BenefitScroungingScum 1 Comments

I am not the only penis breaker!! Woot, woot!

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Bog Off Down Under!

11/25/2009 01:19:00 pm BenefitScroungingScum 1 Comments

With thanks to fellow bendy, Veronica of Sleepless Nights

This is the only disabled toilet in Hobart city centre. The other toilets for the area are up 20 odd stairs and are generally well maintained. The disabled loo’s however double as the baby change station and leave a lot to be desired. There is room to manoeuvre a wheelchair in and transfer, but the toilet has no seat and frankly the whole thing stunk. I wanted to cover my nose while I snapped photos. It was messy and the mirror hadn’t been cleaned at all. No call button/rope either, so if you fell, you’re stuck until someone finds you.

It's somehow weirdly consoling that incompetence is universal...although not nearly as consoling as discovering you're not the only post coital puker around! Thanks Vonnie Xx

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Hej!

11/24/2009 10:40:00 am BenefitScroungingScum 9 Comments

While I'm lying on the sofa, whimpering pathetically and trying to find some food my stomach doesn't object to, it seems like a good time to update. After all, dry rice crispies are not very exciting even if I have left a Hansel and Gretel style trail of them around the Best Man's apartment.

So, I made it to see the Best Man. All the way to Sweden. The journey was relatively uneventful-well, by my standards. I spent almost all of last week resting and trying to get over the whole Oxycontin issue. I'd booked assistance before I left the UK, and it turned up when and where expected. The difference between the British and Scandinavian attitudes to disability is fascinating...even the train had a fully accessible carriage for disabled people, parents with young children and bicycles. The accessible toilet on the train so shocked me I nearly passed out!* It didn't smell and although there was graffitti it was muted. Once I'd arrived I realised what it was that seemed so different about the people...in addition to it being far more multi cultural than the part of the UK I come from, I didn't see any anti social behaviour the whole journey.

Aside from the better facilities there is one overwhelming difference between assistance in the UK and Scandinavia**, attitude. In the UK assistance is usually a bit of a drag. Manchester airport provides excellent disabled toilets and an assistance service to help people get around the airport. The people are perfectly nice but the concept that it's all a bit of a pain to arrange seeps through their very pores. You go where you're told, when and how, for the convenience of those providing the assistance rather than the other way around. So far, what I've seen of Germany and Scandinavia it's the oppposite. People can't do enough to help! Whilst people often offer me help in the UK, this was very different. Those employed to provide assistance have a positive attitude to their roles, probably helped by vastly better equipped and provided facilities than in the UK.

Once I'd realised I was on the wrong train and needed to change, it nearly came to blows so many people were determined to help me out. He'll never see this, but I'd like to tell the kind and patient Iranian gentleman with the prayer beads, who happened to be sat opposite me on the train just how much I appreciated his actions. His face visibly changed when I told him I was British, but he still went out of his way to push me and my case around Malmo station to help me find the correct assistance.

So, the reason I ended up lost in Malmo was because the assistance guy put me on the wrong train at Copenhagen airport. I suspected as much, but thanks to the helpful bi-lingual announcements worked it out before it became a problem and had plenty of time just to get on the train I should've been on initially. Unlike Vodafone UK who insisted they'd enabled my mobile to work in Scandinavia before I left the UK...and who of course hadn't. Which is how I ended up on the wrong train, completely unable to communicate with the Best Man to let him know what was going on. Fortunately once I was on the right train a nice British man lent me his mobile to send a text with arrival times as both the Best Man and Oldest Friend were getting concerned about where I could be.

Despite the week I've just spent doing the better part of nothing and trying to recover...I've tipped back into withdrawl. Hence the rice crispy trail. Again, the Oxycontin is just going straight through me without digesting. Something I would've preferred to know about before vomiting all over the toilet, floor and myself shortly after arriving in the Best Man's apartment. I'm beginning to fear it really is a sex curse. Puking and sex don't go together too well at the best of times, and I really, really don't want it to end up four times in a row!

*though not before getting Bog off photos!
**Germany had a similar attitude to the Scandinavians

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The Deal with Disability

11/19/2009 05:25:00 pm BenefitScroungingScum 3 Comments

As anyone who reads Benefit Scrounging Scum on a regular basis already knows...I have a bit of a 'thing' about how appearance influences perceptions of disability. I recently discovered a new blog, The Deal with Disability It's author, Eva, is an extremely intelligent, perceptive and articulate young woman who just happens to also be severely disabled.

I'm still a tad puddled so I'll just say I can't recommend The Deal with Disability enough!

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Change of plan

11/17/2009 11:35:00 am BenefitScroungingScum 8 Comments

So what can I say...I'm naive! I went back to my GP this morning to be reviewed and to have my bloods taken. Ben had said he knew I wasn't right as I kept curling up in a ball, whimpering that I wanted to die. Although it was the admission I'd spewed on the bathroom floor and just left it there plus the total lack of my OCD need to clean up the flat and insistence that Bendycat could go fuck herself which really did it. Poor Bendycat, I love her really.

So, the New GP took one look at me and said things weren't working out and she wasn't happy for it to continue. To be fair the nice man in the newsagent had said that 5 minutes before but he's not medically qualified. The fact that I was sitting in the GP's reception hugging a sick bowl and shaking might've had something to do with it too.

Although I'd not had any Oxycontin I was having to take Oramorph, co-codamol and some dihydrocodeine Ben found in his bag. New GP explained it's pointless trying to do this as although I can cope with the withdrawal symptoms I clearly can't cope with the pain. I deferred to her far more sensible opinion. I was in no fit state to have blood drawn so that can safely wait until after my visit to The Best Man.

So, the new plan is that I'm to go back on the Oxycontin, 40mg three times a day. Leave it for 5 days or so then gradually taper down the Oxycontin over a period of time. I feel both disappointed and relieved. The withdrawal symptoms are a bit like a nasty flu, the proper kind where you can barely get out of bed. However, they are not too difficult to tolerate because I knew they would end within days. The pain is something else altogether. I'm still not sure how much of the unbearable pain was withdrawal and how much EDS, but it'll probably be easier to get that picture when I taper things off more slowly. I suspect it's more the EDS as once I'd been dosed up with the codeine/oramorph combo and it had had a couple of hours to start to work properly I felt much better, well enough to have something to eat and keep it down.

Although it's been horrible, I'm glad my body has had that break from the Oxycontin and hopeful that slowly reducing the dose will be easier to manage. Mostly what I kept thinking whilst shaking, sweating and rattling was how much strength it really takes for addicts to get themselves off heroin. It was easy for me not to take the tablets because I don't have any of the psychological components of addiction, but even I was fantasising about a nice general anaesthetic and only having to wake up once it was all over. Certainly addiction is a massive problem for society as a whole and particularly the welfare state but until we address the reasons people become addicts and stop blaming addicts themselves nothing will change.

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The first 24 hours...

11/17/2009 08:15:00 am BenefitScroungingScum 5 Comments

Oh god I want to die! Actually I don't, I just want the pain to stop dammit! So far things are going better than I'd anticipated. Ben stayed on the sofa last night so that there was someone here if I needed help or just someone to witter at while I was rattling. He'd stocked up on Immodium as I'd expected to have horrific diarrhea plus brought fizzy drinks and ice lollies.

So, yesterday afternoon/evening I had alot of shakes, sweats and shivers. I took my last dose of Oxycontin at 6am Nov 16th so it's been 26 hours now, and of course no guarantee that last dose was even digested. I suspect not properly as the withdrawl symptoms were much more severe yesterday afternoon/evening than throughout the night.

By midnight ish I'd had a couple of doses of diazepam (correctly spaced out), doses of basic co-codamol (for the overseas amongst you that's 8mg of codeine with 500mg of paracetamol) and doses of Oramorph. Plus a shit load of skunk.

I still hurt. Alot. I couldn't tell last night, and still can't really if the extreme muscular type pain I'm experiencing is because of the EDS or part of the withdrawl. That's one of the reasons I want to not take Oxycontin at the moment, it means I can't really tell whether the drug is causing the pain or the EDS. Whatever it is I can't function like this and will be begging new GP for some alternative pain relief. I feel like only someone rubbing their fists, very firmly into my back would reduce the pain. Sadly there are no suitable fists in range.

Probably the most significant problem has been the thirst. I'm not sure if it's just from the sweating, or something more specific but constant thirst has been a feature of this. I keep finding myself sort of smacking my tongue repeatedly, in a similar fashion to a baby suckling. All a bit odd! Usually I can't stand fizzy drinks, I only want them when I feel sick, but now I can't get enough sweet liquids. Proper food was out of the question last night but I got into the sugar about midnight.

I did get a reasonable amount of rest between about 2am and 7am. Whilst not proper sleep I was able to doze reasonably comfortably for a while. Pain woke me up and since then I've been ridiculously thirsty, thrown up...not just on the bathroom floor and had some relatively very mild diarrhea.

The sweats are really starting up again now, although I think these are more caused by pain and lack of calories. At no point have I been frightened for my physical or mental health though I have been a bit puddled at times. It's funny...the Oxycontin tablets I should have taken at 2pm yesterday are sitting on my bedside table, there is more oxycontin in the drawer and wardrobe. But, at no point have I wanted to take it. I was considering taking 10mg last night when rest was eluding me but decided it would only make things more difficult in the long run.

Now I'm giving myself stern talkings to about it only being a couple of hours until I can get some more appropriate pain relief. I am well overdue a dose of Oramorph but fear it'll just make me vomit again at this time of day, so that probably won't prove a practical longer term option.

However, overall, so far so good. No major problems or complications but my heart goes out to those trying to do this with a psychological addiction in addition to a physical dependancy. It may be very naive of me, but I'm hoping the worst is over.


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The plan...

11/16/2009 05:41:00 pm BenefitScroungingScum 9 Comments

I saw New GP, told her she could tell me I was insane at any point and we agreed upon a plan of action. Unfortunately the blood tests I had done last week were unusable because the samples were insufficient. Sensibly the local GP's get blood tests back on the same day now...but only if there's a result. It transpires it takes days for the hospital to notify the GP if the samples were insufficient.

Tomorrow morning I go back and New GP will draw blood herself to make sure it's done properly. I've not heard back about the rheumatology referral yet so that is something New GP will sort next week if it isn't through.

The plan is to stop taking the Oxycontin altogether. I should stress this was not the GP's idea. I've been thinking about doing this for some time. I have Oramorph to take should the pain be unmanageable, and diazepam should the physical effects of withdrawl be too miserable. I need to be careful because I really don't want to switch one dependancy for another. If I really, really can't cope going through withdrawl by just stopping, then I have lower dosages of oxycontin to taper down with. That would have been the most sensible and my preferred option but as I think I've only had one or two doses of Oxycontin be digested in the last 3 or 4 days it's probably going to be easier just to stop. It also suits my personality better.Having practically chain smoked for more than half my adult life, I chose to give up smoking by using a bit of nicotine gum which I stopped after about 10 days.

I plan to try and write down how this experience feels over the next few days so to have a contemporanous record. It'll probably all end up squiggle though. There are people nearby I can call upon at any time to come and sit with me if things get too difficult.

I'm expecting things to be a bit, alot, completely shit for the next few days. I wrote a list for Ben to take to the shops for me earlier, only some of which made any sense as I'd written nonsense words down. I think that's bound to happen again...but then pretty much all I write is nonsense so maybe it's just a sensible career progression.

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Shake, rattle and roll

11/16/2009 01:20:00 pm BenefitScroungingScum 7 Comments

Whilst it should probably be obvious, it usually takes someone else to point out to me that I'm having a tougher time than usual. Actually it usually takes several efforts from different someones until I register things are just a little bit shit. It's nearly the end of the year, so it makes sense I'm just waking up to the fact that this year has been unusually difficult, even by my standards.

I need to be sick. Really sick. The kind where you vomit and vomit until there is no more left and start feeling better for it. Unfortunately I've got the constantly nauseous with occasional side order of vomit variety of feeling sick. I've rationalised this in a hundred different ways, some of which make logical sense and some of which are simply the kind of bullshit my mind comes up with on a daily basis to convince myself I am in fact "not sick". At least I can admit it's all just bullshit...eventually!

So having run through the usual list of puking can be normal for me, of course you feel shit you're overdoing things, the potential link between my having sex and spewing in front of the poor bloke*, plus various other nonsensical reasons to spew I finally twigged on to the real reason.

Opiate withdrawl and consequent lack of pain relief. I should've perhaps been a little quicker on the uptake when new GP increased my pain meds. The thing is that long term pain becomes a part of your life to such extent it ends up impossible to tell what is normal. Whilst I generally register than I'm in more pain than usual I have learnt to seperate out the feelings of pain from the rest of me...possibly too successfully. I simply can't imagine how it feels not to be in pain all the time. In fact thinking about it blows my mind so much I have to stop.

I have been using Oxycontin to treat my pain for most of the past decade. Apart from never having had the full 12 hours coverage and so taking it three times a day instead of two it's been incredibly successful and vastly improved my quality of life. It's a medication I wouldn't hesitate to recommend to other people who suffer from extreme chronic pain. From a patient perspective Oxycontin works effectively to reduce pain sensations without major side effects, unlike say Oramorph which seems to attack the pain by making the user feel so 'smacked out' they don't really care about being in pain.

Over the years I've used Oxycontin it has been normal for me to occasionally go through periods where, for whatever reason, my body doesn't digest the tablets and they simply pass straight through me. Typically I'd notice a few days of increased pain/difficulty, wander around in a daze not knowing why, then realise when the tablets start to appear in the toilet bowl. Undigested Oxycontin floats and is often left behind after flushing the toilet so it's easy to tell when it's going straight through!

I'd sort of noticed this had been happening alot more frequently the past six months or so and been toying with the potentiallycompletely insane idea of stopping it altogether and going medication free** for some time. I've previously been on far greater doses of controlled drugs and so have some, limited experience of withdrawl. I was at one stage prescribed 260mg of Oxycontin per day alongside 50mcg of Fentanyl, patch to be changed every 48 hours instead of every 72. No-one really understands the reasons, but for many people with Ehlers Danlos Syndrome medications simply don't work as they do in non bendy people. EDS'ers tend to fall into 2 main groups; those who are extremely sensitive to any kind of medication and become sedated from milder forms of pain relief such as paracetamol, and those who seem to have the ability to consume enough opiates to render a large elephant unconscious for a year. I fall firmly into the second category, and even on the full amount of Oxycontin, Fentanyl and Topiramate was able to function enough to drive.

Although I could function, all that medication caused it's own problems so I eventually decided to come off the Fentanyl and use a reduced dose of Oxycontin, then a year or so later remove the Topiramate altogether. It was some time ago, and is probably fortunate I don't remember a great deal about the entire experience. What I do remember is that the safest, easiest option was decided to be removing a fentanyl patch early one morning, going 'cold turkey' throughout the day and then switching to an initially increased dose of Oxycontin 12 hours later. For that 12 hour period however I couldn't take any additional medication. I have blurred memories of feeling much as I do now, sweaty, shivery and shaky seemingly without end. However, because I was physically dependant on the medication but not addicted it was far easier for me to just feel like absolute death for a day than it would be for an addict.

Thinking back the instances of Oxycontin not digesting have been becoming more and more frequent through the past 12 months. It's now reached a point where the medication is not working/not being digested far more frequently than it is. This may account for many of the difficulties I've been having these past few months...I'm probably going into withdrawal for a few days at a time before the tablets digest for the odd dose or two and mean I just start to withdraw again a few days later. The ultimate result being I feel like death warmed up most of the time.

So, in an hour I'm off to see New GP again. I'm hoping to go to see The Best Man next week, which involves flying so I desperately want to be feeling better. At the moment my, very probably suicidal plan, is to just not even bother swallowing the Oxycontin and see how quickly it comes out of my system, or how miserable it makes me...whichever comes first. I'm hoping a few days of a cannabis/diazepam cocktail will be enough to cover the worst withdrawl and pain symtoms until my system is fully clear of the Oxycontin and I can make an assessment of how things are then.


So, either the GP will talk me out of this, or I'll be having a spectacularly miserable 3 days. Whichever, wish me luck won't you?



*Yes, again. Already. And, let's face it, however nice the man is about it, vomit is a bit of a turn off! "Hello darling I need to spew" just doesn't have the same ring to it as "Hello darling like my new lingerie!"
**apart from the dope. Are you listening Mr Johnson? Some of us really, really need you to sort out the position on medical marijuana!

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"Mind your language"

11/06/2009 06:48:00 pm BenefitScroungingScum 1 Comments

"When did people with disabilities cease to matter in the battle against bigotry?" Ian Birrell , The Independant

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Pathways to confusion

11/04/2009 04:50:00 pm BenefitScroungingScum 8 Comments

On Monday I attended the local job centre for my Pathways to Work interview. Pathways interviews are held in jobcentres with a Disability Employment Advisor (DEA), the idea is to offer support tailored to the individual's particular health condition and concerns with the eventual aim of moving the person into work and away from benefits.

The interview was booked prior to my having the flu, so I didn't think I needed a home visit. I could definitely have done with the day in bed, let alone the home visit, particularly after spending the previous night without central heating. As I'd got muddled up and thought I was going to an Employment and Support Allowance assessment type interview it didn't occur to me to phone and cancel.

Unsurprisingly parking was tricky, though thanks to the blue badge I could park on the double yellows. I was fairly confident that the 'accessible' entrance system would be just as inaccessible as it was two years ago when I went to see the jobs broker. Sadly my confidence was well placed. The intercom is still sited approximately 5feet up the wall, and the token doorbell at a height a wheelchair user would probably have to strain to reach. On arrival you need to push the intercom, wait for someone to answer...and then just wait. And wait. And wait. For the, ahem, age challenged security guard to walk all the way down from the main job centre. Not an easy task if you struggle to stand up. Obviously there isn't anywhere to sit while you wait!

I was already pushed past my limits when I arrived, waiting to get in and going up pretty much finished me off. I was an attractive, grey coloured, shaking wreck when I arrived. I'm really not sure how I avoided hitting the floor face first. I just headed for the nearest seat to reception and focused on that. The staff were extremely kind, and one lady approached me immediately to see if I was ok, bringing me a tissue and some water.

I've previously met my DEA (Hi S!) who is lovely. Unlike every experience I've had with job brokers, the DEA's know their jobs well, understand the benefits system and crucially the kind of support people with health conditions need to move into work, and have the ability to recognise those who are capable of it. I have no idea why job brokers were introduced as they are incredibly expensive and doing the job the DEA's were already doing, except the DEA's did the job far better and more cost effectively.

It's evident I'm not fit for work so we didn't bother discussing what I'd need to make it possible. This DEA is good, but I reckon a cure for EDS is beyond her remit. What we did discuss was something called 'permitted work'. Broadly speaking, 'permitted work' is for people with health limiting conditions who would like to try a certain type of work to see if it's possible for them, without ending up having their benefits sanctioned. The rules state a maximum of 16 hours 'permitted work' a week, and that the work must be relevant to moving into work whilst not contravening the individual's entitlement to an incapacity benefit. So, for someone with learning difficulties it might be appropriate to try a bricklaying course as 'permitted work' but for inappropriate for someone with a back problem. The individual can earn up to £93.00 a week whilst on 'permitted work', although that may have an impact on entitlement to other benefits such as housing or council tax benefit. The 'permitted work' may be continued for a period of 52 weeks, which can be started or stopped if needed. Once the 52 weeks is up the person either has to move into paid employment or if they are unfit to they will remain on benefit but no longer be allowed to do 'permitted work'

It's all a bit convoluted as anything to do with the benefits system is, but basically it's one of the better ideas to help support people into work as it allows for a gradual process. It seemed like a great idea for me to legitimately be able to try to earn some money from writing.

Except...you're only allowed to do 'permitted work' if you are in receipt of Incapacity Benefit. I'm in receipt of Income Support which means I'm not eligible, despite meeting all the same criteria for incapacity. It's incredibly frustrating.

Just not anywhere near as frustrating as seeing tax money spent on duplicating existing services with poorer quality, more expensive services and demonising benefits recipients so no-one cares enough to notice

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Care and Continuity

11/03/2009 04:25:00 pm BenefitScroungingScum 7 Comments

When I saw the new GP last week she wanted me to have some blood tests done, as well as putting in an urgent referral to the rheumatologists. I need to be re-referred because although I know the name of the consultant I saw the last couple of times, he was a locum and none of us knew if he was still working at the local hospital. Also, the rules about waiting times only apply to new referrrals, not returning patients.

So today I went back to the surgery to have my bloods taken. Yesterday was a tough day and I was already shattered. I didn't think I looked too awful though, until I made it into the surgery and the practice nurse saw me making my way to reception with the help of the wall. Useful things walls.

My practice nurse knows me, so she knows just by looking at me if I'm struggling. She got me sat down then went off to sort out booking me in at reception and finding the phlebotomist. Nurse took me through and hung around while I had my blood drawn, which was useful as it turned out we needed an extra pair of hands to elevate my arm afterwards. Thankfully it was a pair of hands well aware that if they weren't careful they'd have to put back a dislocated shoulder as the phlebotomist looked ready to flee by that point!

Nurse decided she wanted to see me herself, and so found me the 'comfy chair' to sit in whilst she saw a patient with an appointment and had a word with the GP. The GP wanted my temperature and blood pressure taken, so we did that. Both of which were 'textbook' normal. Despite the fact I was grey, shaking and alternating between dripping with sweat and shivering. Eventually Nurse decided the only sensible thing to write in my notes was...'ill'.

Nurse helped me back to the 'comfy chair' having decided I needed to see the GP anyway. A 'just doesn't look right' from an experienced nurse should never be underestimated. I did not have an appointment booked with either the nurse or the GP, but time was found. Again, these are the kind of daily happenstances which keep primary care functioning at such a high standard in the UK. Sadly they are also the kind of happenstances which cannot be measured and quantified by bean counters in the Department of Health, so there they are deemed not to happen or even be needed amongst the clamours for attention from the middle class worried well.

I like the New GP. I know she's at a bit of a loss in this situation but she's dealing with it remarkably well, and vitally isn't pretending she knows all about EDS when she actually knows next to nothing. New GP had wanted to check for a few things, general inflammation levels, rheumatoid factor just in case, kidney function and to test for streptoccocus as I've recently had a throat infection. My personal feeling is that, despite problems with precise diagnosis, the recent flu I had was more than likely swine flu and this is the after effects on a vulnerable EDS body. Nurse was telling me about a relative of hers who had swine flu, seemed fully recovered other than a slight cough, then was taken ill while on holiday and is currently in an overseas Intensive Care bed. Hopefully the young patient in question will be better very soon.

New GP wanted to alter my pain medication as chronic pain can cause the kind of symptoms I'm experiencing. I'm a little wary of this as I feel more than anything my body needs rest at the moment, and additional pain relief may mean I just push myself harder. We settled on adding in an extra 10mg of Oxycontin to my regular doses to see if that damps things down a bit. Hopefully it won't be so much I can declare myself immediately healed....until ending up in A&E.

I've got a very special weekend planned in the near future so until then I'm on strict, rest and recuperate orders!

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Gas, gas, gas!

11/01/2009 04:59:00 pm BenefitScroungingScum 8 Comments

It seems to have been one of those days. Well, one of those weekends actually. It's all a bit of a blur. The Voltarol is definitely a contributing factor, but then so is the pain. Along with the most traditional of reasons to become slightly confused and distracted. No, not dope, that's only traditional for me, but admittedly that's a factor too. You'd worry if it weren't.

So, um, yeah. I'm a bit puddled today. Which might be why it took me a while to notice that although the heating was on, the radiators were getting colder. Towering intellect that I am. I decided it had to be the washing machine stealing the heat from the boiler. Coincidences lead to that kind of non scientific stupid thought process.

Even I managed to figure out the pilot light had blown out on the boiler. I suspect my methods of deduction wouldn't be approved of by Transco. Not that I know what their methods are. I'm currently wondering if I need to turn off the actual gas supply and if so how. I've turned off the timer clock for the boiler so it won't turn on anymore. I don't think. My grasp of the physical world and laws of science being tenuous at best. I did at least manage to ask a neighbour to come and attempt to light the pilot light. He scratched his head a bit, mumbled about being a builder and decided best left.

Fortunately I've learnt to keep a stash of one pound coins in for the electric meter. Without gas central heating I'll have to rely on the fan heaters my landlord sent round, and they eat electricity faster than anything else.

It's my Pathways To Work interview at the job centre tomorrow. Between the inflammed joints, marshmallow tablets and lack of heating it could prove an interesting experience. The irony is I'm not worried about it because I'm so borked they can't possibly find me fit for work! Now, who's willing to bet the access situation is still the same as back in 2007?

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Where have all the GP's gone....

10/30/2009 08:39:00 pm BenefitScroungingScum 5 Comments

So, on Monday off I went to see the new GP. She's very nice, but then so is the other lady GP at this particular practice. Fortunately the new GP is also competent, which is always more important than nice. Unless you work in the department for health.

The quality of care provided by the NHS is much maligned in the UK, primarily because we're so spoilt by having universal health care, we have no idea how valuable it really is. A cornerstone of the NHS is General Practice. One of the many, current, back of a fag packet, political ideas is to 'open up' access to general practice by bringing in the idea of 'health care professionals' and supermarket style polyclinics. Of course, like all such ideas, it's been conceived by fit, healthy, younger people who have no idea what GP's do beyond the odd smear, travel vaccine or prescription for antibiotics. People who don't need to use General Practice services so don't understand why they are important.

My GP retired last year. He had never met anyone with Ehlers Danlos Syndrome prior to my joining the practice, but he went out of his way to educate himself on the condition. I changed practice so that he became my doctor a few months after I was first diagnosed, his patience and support were invaluable in my lengthy recovery. There have been many changes to the practice since he retired, mostly long overdue modernisation. Unfortunately the consequence to all this shiny new equipment and ways of working seems to be a drop in the standard of medical care.

If you have a long term condition, particularly a condition such as Ehlers Danlos Syndrome which is considered 'rare', it's very difficult every time you see a new doctor. Lengthy, complicated explanations are often required to get through the basics of a medical history, before the actual reason for the consultation is reached. Inevitably this forces appointments to overrun and puts the whole day behind. It also makes the job of the doctor much more difficult as they have to try and get up to speed on a condition they may not have heard of since medical school as well as understand the difference that makes to the diagnosis or treatment of the current problem. That's an incredibly tall order in a ten minute consultation.

It's not just people with rare conditions in this situation, an average day for a General Practitioner will include any or all of the following:

Granny who broke her leg last year, ended up in hospital for a month and now takes 7 different potentially interacting medications for conditions she can't say the name of, let alone recall when she was diagnosed or even what she's supposed to do with all these medicines. Yummy Mummy who's heard bad things in the press about MMR and is totally bewildered as to what she should do, needs reassurance and explanation about whether she should vaccinate her child. The 13 year old Vicky Pollard screaming and shouting in reception about her 'rights innit', competing with the middle aged man bawling out the receptionists for not getting the collapsed asthma attack out of the treatment room so he can have his travel vaccines.

A good GP would know Granny gets confused about her medications, because Granny comes to the surgery every month confused about her medications. That the Yummy Mummy is usually very sensible but has a nephew on the autistic spectrum and doesn't know if the things her friends say about MMR are credible. That Vicky Pollard was a sweet, well behaved little girl until her mum died last year and her dad hit the bottle hard and this is their first holiday since then.

My GP knew that if I had to even mention pain to him, it was serious. I miss the difference that background knowledge made to my medical care. Now I may be able to see a doctor any time I like, but the only people left who know whether my joints are in a good or bad phase are the receptionists.

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Bog Off - Exhibit 18, ENID

10/29/2009 06:14:00 pm BenefitScroungingScum 3 Comments

Thanks very much to BSS reader Rachel who sent in this bog off. In her words....


Hello Bendygirl,
I've been following your bogoff exhibition and couldn't resist this one that I came across in so-called disabled toilet (I'd rather call it an accessible toilet, but that day it was falling short of that) in my local hospital - off all places. The emergency cord was tied up so high that even a standing up person, even the tallest person I've ever met would have needed a step ladder to get to it - in fact they must have used a step ladder to tie it up.

So having decided to photograph it I wanted a picture that took in the whole scene, including the toilet so that it could be see just how high up it was, but in order to do that I ended up scrunched in a corner of the room, on the floor (which did seem fairly clean or I really wouldn't have been there). Just as I was doing that there started a furious rattling on the door handle. I pulled myself up just in time to catch the door handle that had been shaken loose and come apart. I did manage to open the door, and there was an ENID (Elderly but Not in-any-way Disabled) who could have gone to any toilet but wanted to go to that one because she paid her taxes or somesuch whatever. Anyway.... I said "You might not want to go in there, that door handle is broken, and if you can't get out, there emergency cord is out of reach and you'll be stuck", she didn't respond, but shoved the door handle back onto the door and pushed past me. I repeated my advice, she said "Well, I've got to go" and was past me by then and I had to point out that I need to get my walking frame out or else she would have shut the door in my face.

There was a part of me that wanted to leave her to it. But I'm not actually a total git, so I went to a reception desk just around the corner to tell somebody. There was no-one there so I started writing an explanatory note. Somebody in a uniform, could have been a paramedic or a SJA volunteer turned up just as I was finished and I showed him the note and left him to deal with it. As I left I heard the unmistakeable sounds of ENID banging on the door....

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Blah

10/24/2009 07:39:00 pm BenefitScroungingScum 8 Comments

I've got a serious case of the blah's. Every so often I slip back into pity party mode for a few minutes before finding something interestinger to think about, usually sex, and snapping out of it. I'm bored. Bored of being in so much pain. Bored of being unable to focus because of the so much pain. Bored of being bored.

I made it to the bench again today. Hot chocolatey, low calorie, chemical crap substitue drink intact. Which is more than I can say for the pavement. That was showing various signs of my previous visits. At least I know where the mug I was sure I remembered having went. Maybe someone will find it in hundreds of years amongst the splatters of peppermint tea and skinny latte I've spilt and pontificate as to what it all means.

I made it to the bench though. Yeay! It was nice. The sun was out, the birds were singing. There was the hot chocolate imposter. There were even helicopters and lifeboatmen. People smiled at me, I smiled back at them. What's not to like?

Other than, it's y'know, a bench. And it was the most exciting thing I did all day.

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BNP Posts

10/22/2009 06:23:00 pm BenefitScroungingScum 5 Comments

BNP leader Nick Griffin will appear on the BBC's Question Time tonight. As lots of people seem to be visiting here to find out the BNP's views of disabled people I am reposting all relevant posts.

First posted 4th June 2009

Today in England the elections for the European parliament are held. As so many people wish to protest against New Labour and the all party expenses scandal smaller parties are expected to do well. In many areas the BNP ( British National Party) have been campaigning heavily. Most people are aware that the BNP are primarily racist thugs, but I doubt as many are aware of their views about disabled people.

After the tragic death of David Cameron's son Ivan earlier this year Jeffrey Marshall, senior organiser for the BNP made this statement on an internet forum:

"We live in a country today which is unhealthily dominated by an excess of sentimentality towards the weak and unproductive. No good will come of it."

Later, in response to other comments on the site, Marshall allegedly wrote

"There is not a great deal of point in keeping these people alive after all."

Many people, including myself, are so disillusioned and disgusted by the behaviour of politicians they don't know who to vote for, or even whether to vote at all. Whilst that's understandable, it's also likely to lead to gains for extremist groups such as the BNP.

A society should be judged by how it cares for it's most vulnerable. The BNP believe that to be an excess of sentimentality and can't see the point in keeping such disabled people alive. Is that the kind of country we really want to live in?

First posted 8th June 2009
Freedom Fighting




On such a depressing day, particularly for those of us living in the North West, the best thing we can all do is put aside our anger and remember what it is we love about being British.

For me the most important part of my British identity is freedom. Freedom to believe in whatever I choose to believe in, and so long as they harm no-one, the freedom to live my life in accordance with those beliefs.

My family were immigrants, Jews fleeing the persecution of Russian pogroms on my maternal side, and Irish seeking work on my paternal side. Such a background means I believe in freedom of thought and expression so vehemently that regardless of my disgust for their politics I absolutely support the right of parties such as the BNP to believe whatever they want to believe.

Previous generations laid down their lives for us to be able to live in such freedom. It's equally important now that we fight as bravely as they did. Instead of guns and bombs our weapons should be freedom and justice. It's too easy to think that nothing we do makes any difference and become apathetic. Just one small gesture performed every day by each one of us can make enough difference to change our society.

Today my gesture was to visit the grave of Lieutenant John O'Neill, VC. Lt O'Neill is buried in the cemetery a few streets away from my home. His grave was looking like it needed some love and attention when I discovered it a few days ago, so today I returned to clean it.

What will your gesture be?



First posted 16th June 2009
"An open letter from The Royal British Legion to Nick Griffin, Chairman of the BNP and MEP for North West England.

09 June 2009

Dear Mr Griffin,

We couldn't help but notice that there was egg on your face (and on your suit jacket) on the day after you were elected MEP for North West England.

Please don't leave egg on ours.

You wore a Poppy lapel badge during your news conference to celebrate your election victory. This was in direct contravention of our polite request that you refrain from politicising one of the nation's most treasured and beloved symbols.

The Poppy is the symbol of sacrifices made by British Armed Forces in conflicts both past and present and it has been paid for with blood and valour. True valour deserves respect regardless of a person's ethnic origin, and everyone who serves or has served their country deserves nothing less.

The Poppy pin, the Poppy logo, and the paper Poppy worn during Remembrance are the property, trademark and emblem of The Royal British Legion.

For nearly 90 years, The Royal British Legion has pursued a policy of being scrupulously above the party political fray. It is vital that everyone - the media, the public and our beneficiaries - know that we will not allow our independence to be undermined or our reputation impaired by being closely associated with any one political party. This is more important now than ever.

On May 27th, 2009, the National Chairman of The Royal British Legion wrote to you privately requesting that you desist from wearing the Poppy or any other emblem that might be associated with the Legion at any of your public appearances during the European Parliamentary election campaign.

He appealed to your sense of honour. But you have responded by continuing to wear the poppy. So now we're no longer asking you privately.

Stop it, Mr Griffin. Just stop it.

Regards,

The Royal British Legion"


For all of us who believe the BNP do not represent us or the Britain we live in, then please sign the 'Not in my name' petition




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Looking back...

10/21/2009 07:53:00 pm BenefitScroungingScum 5 Comments

Flicking through some old photos earlier this evening I found these. They were taken back in August 2007 whilst I was in A&E after multiple dislocations. The original blogs are reproduced below. The funny thing is that whilst my memory of the event is clear, the fear I felt when reading about it was something new. My main feeling if I think back to that night is how much we laughed.





First posted 19th August 2007
It happened at about 7 o'clock. We were all in the kitchen, laughing, joking, messing around, Princess Fairy Toes teasing me about my inability to cope with the three people crammed into my small kitchen, clearing up the mess from dinner, Siobhan washing up, visiting for the weekend.

I was already tired, Siobhan and I having been on a girly shopping trip earlier in the day so none too steady on my feet as I tried to open the cupboard under the sink. My hips dislocated, I wobbled and fell. As I toppled forwards the corner of the open cupboard door broke my fall before I hit the floor...unfortunately hitting smack into the corner of my collar bone and throat. The impact was hard and harsh. My collarbone popped itself out to the side, dislocating rapidly out and relocating itself back in a moment later, visibly damaging the tendon attached at the tip, running up into my neck as it went. More importantly though, my thyroid dislocated out as did my larynx.

That was it, I couldn't breathe. My throat shut firmly into spasm. Toes and Siobhan had dropped everything they were doing when I fell, Toes catching me in the small kitchen, knowing something was very wrong. He saw my collarbone pop in and out, and as I struggled to work out what had happened, my hands go to my neck, heard the crunch as I reached up and pushed my thyroid gland back into place. Later said he saw something else move around more disturbingly that he knew to be my larynx.

Both Toes and Siobhan asked if I was ok. I couldn't speak properly. I realised I couldn't really breathe either. So used are we all to falls, dislocations and any manner of trauma none of us were particularly panicked, Toes moved me into the lounge where it was lighter and more spacious so he could sit me down and see what had happened. Then he did worry. I still couldn't breathe properly. One minute I was fine, next I couldn't breathe. Couldn't speak properly to explain what was wrong. Toes wanted to know where I kept my pens. He wanted a 'biro' to hand....just in case he said. I flapped my floppy hands, wheezed a bit and managed to croak I was fine. Was breathing by then. Then I couldn't again, my throat spasmed tightly shut. Open again. Spasmed shut again. It was lasting for around a minute, minute and a half at the most. I was looking a little blue about the gills.

Toes found my ventolin inhaler and gave me a dose of that, concerned as I'm not usually wheezy. He then got the oramorph from the fridge, gave me 5mls of that which I choked and spluttered on a bit but swallowed, then promptly stopped breathing again. I'm well set up for all manner of emergencies at home, having these days an exceptional GP who prescribes wisely, but all three of us realised that this was more than typical. By now a few minutes had passed and I could speak a little, though not properly, my voice trailing off into slurring and nothingness after only a couple of words. We considered calling an ambulance, driving to A&E or staying at home and realised that I was going to have to go in, but not by ambulance. I have extremely strong views about the use of ambulances. They are for severe and life threatening emergencies only. We had access to a car, someone to drive, someone to help me, and it was probably quicker and easier just to drive. Or maybe I'm just afraid of ambulances as well as hospitals.

We found house keys and mobile phones and went out the front door. I collapsed in the road. My body was clearly struggling to cope with the shock. At my bendiest time of the month anyway, the spasms caused by multiple dislocations and shock were having huge impact sending me into what we fondly describe as a spaz attack...where I become so lax and floppy I dislocate constantly in and out of multiple joints causing me to look a bit like Elvis on a bad acid trip gone seriously, profoundly wrong. Its usually pretty amusing, especially as I tend to howl with laughter...but the lack of oxygen thing meant not so much laughing this time. That came later.

We got to the hospital quickly. Like most hospitals now you have to go through a barrier into a car park so they can later charge you to get out. A&E is no exception to this rule. Toes needed to drop us off as close as he could to A&E. It wasn't close enough. It was obvious I wasn't going to be able to walk the handful of metres to the doors. Siobhan had to half drag, half carry me into the building whilst Toes parked and ran back to get a wheelchair which he plopped me into just before I hit the floor at reception where Siobhan was struggling to hold me up.


First posted 19th August 2007
Part 2 A&E

We had to give my details at reception, name, date of birth, address, next of kin, usual stuff. All a bit difficult when you can't speak more than a croak or two and keep stopping breathing. Still a formal requirement though. Even when the details of an accident involving a cupboard door corner to the throat have been given. I made squiggly signs with my hand, but it took Siobhan to tell the receptionist that meant I wanted a pen to write down my details rather than trying to talk which by then I'd realised was making things worse.

The receptionist told us it wouldn't be long before I was seen in triage, and it wasn't. I was taken through and seen by a nurse I'd seen on a previous A&E visit. A nurse who claimed to know all about EDS. Siobhan explained to her what had happened, as I couldn't speak well enough at that point, my throat spasming too much, stopping me from breathing if I tried. Toes wandered back in towards the end of the triage assessment, he works in the same hospital. She told him she'd categorised me as yellow, so I'd be seen fairly soon, and as there was nowhere to put me in minors, I'd be safe in the waiting room as he was with me. Spending most of my life with the EDS undiagnosed and the label of attention seeking/mental has taught me a thing or two, and I knew both that she was making a bad clinical decision, and that it was personal. Whether that was directed at me or Toes I had no idea. Nor could I be bothered to do anything about it. Breathing was far more of a priority and frankly hard work.

Toes and Siobhan wheeled me back out to reception and we sat there and waited. When I was fine I was fine, but when I wasn't I really wasn't. My throat was continuing to spasm down hard every so often stopping me from breathing in. It still wasn't lasting more than a minute or two and I was getting used to it, not too worried it would carry on longer, but still a bit frightening when it was happening. Toes disappeared off a few times, looking for colleagues he might know, concerned that I'd been sent back out to sit in the waiting room.

After 20 minutes or so, the friendly looking man we'd seen coming in and out came and called me in. We'd thought he was a nurse the way he was coming out into the waiting area, and interacting with patients, but he was a senior registrar, in fact the most senior doctor in the department, and I'd noticed him keeping an eye on me earlier when I was struggling to breathe. He took us back through into the triage area, obviously none to happy with the nurses assessment and did his own. He asked me what happened, and with the help of Siobhan I managed to explain. The difference this time was that he actually did understand EDS instead of just dangerously pretending to. We managed to communicate that I'd dislocated my hip, so fallen, dislocated my collarbone and thyroid and we thought larynx too. His eyes got a bit wide when I croaked that I'd dislocated my thyroid, and he asked how I thought I might have done that. The easiest way to explain was to take his hand, place his fingers gently to my throat, and dislocate my thyroid gland back and forth. His eyes got very wide at that point and after giving me a chance to recover from the spasm that triggered off, laugh kindly at my attempts to tell him I was fine and there was nothing wrong with me I was being taken straight off to majors. I heard him very firmly telling the previous nurse that he didn't care if there wasn't any space they were to make space. If they didn't have it in 'resus' then majors would do.

The doctor wheeled me through himself and found a room in majors. A nurse came in to throw a sheet over the trolley, and that was the last contact with any nurse I had. The doctor came back in, introduced himself properly, turned on the oxygen and told me to put the mask on. He wanted to have a look in my throat, so needed me to open my mouth, at which point my jaw promptly dislocated. I gave it another go, and he managed to get a brief look. I was able to speak a bit more by this point, and so could better explain to him both what had happened and what was happening now. Mostly I tried to tell him I was fine. Nothing wrong. He seemed to find that highly amusing. He said he'd spoken to the doctor on call for ENT, and that she was already on her way in, that he expected I would need to be 'scoped' and that he was going to give me some hydrocortisone straight away. I tried to insist there was no need and my throat spasmed shut again.

The doctor went off and came back with the kit to put a drip in my arm, and the hydrocortisone injections. He chatted away to us while he put the drip in, asking about whether I was good with needles (just good at ignoring them) and joked a little about the strange position I'd naturally contorted myself into on the trolley.

By this time I'd realised that the reason my chest hurt so much was that one of my ribs was dislocated. Siobhan had let the doctor know when he came back into the room to do the drip, and after checking it, he asked if I could put it back myself. I said not a rib, but that he could. I was extremely impressed that he didn't make a fuss about unnecessary chest x-rays, and once I'd given him the go ahead, attempted a reduction there and then. The rib was determined to stay out though, so after a couple of attempts we both agreed it was best left out.

Shortly after that the on call ENT doctor arrived, surprised I think to be apologised to for wasting her time and dragging her out on a saturday night. She quickly assessed the situation, by this time a few hours had passed since I'd fallen and hit my throat, and the spasms were getting further apart, my speech much easier though my voice was exceptionally hoarse at best. She checked with Siobhan to ensure that my normal speaking voice wasn't hoarse, and I didn't usually cough the way I was, and after a quick feel of my throat/neck area and exclaiming over how incredibly lax and hypermobile it all is she decided she wanted to go ahead with the scope. She also said she'd really like to keep me in in case she had to take me to theatre, but after seeing how much I panicked at the mere mention of staying over night she said she would leave that decision until after the scope.
She went off to get the scope and prepare, and the doctor from earlier popped back in to say he was going off shift and hoped I'd be ok. We thanked him very much for all his help.

By that time I needed to go for a pee. I slid off the trolley to find I was still in full spaz attack mode. I had nothing stable in my entire body. Hips, knees, ankles, SI joint, all were flicking in and out of their sockets randomly and rapidly. Siobhan part held, part dragged me towards the toilet. To get there we had to go through the middle of two large groups of nurses, it must have been shift change. As we went to the toilet, despite being polite and lucid I was stared at with the disdain I'm sure they rightly give to vast numbers of weekend drunks, and received the same treatment on the way back...from both groups. Now, I'm used to the odd member of the public feeling that they can randomly accuse me of having been drinking if I'm flopping all over the place in say the supermarket, which is hurtful enough, but its far, far worse when 'that' look comes from supposedly highly trained professionals during an emergency medical situation. Not one of the nurses offered any help, asked if we needed a wheelchair, or in fact did anything but blatantly and openly stare.

We got back to the room just as the ENT doctor was coming back with the 'scope'. She looked at me in a totally different and perfectly acceptable way, laughed along with us, and asked if things were always this difficult for me. Talking was easier by this stage, but still hard work, so Siobhan explained things to her, including that my thyroid can dislocate, but wouldn't usually cause this kind of problem, and she very rapidly grasped that the problems were most likely being caused by the internal laxity of my throat, allowing it to fall shut on itself, spasming as a reaction to the dislocations, unlike in a non-EDS person who's collagen is nice and strong and not like melted runny chewing gum.

Whilst she was setting up her scope kit she said that ideally she'd like to keep me in for observation, even if everything was ok, but when she saw how frightened I was by this, she asked why. I told her I'd only been diagnosed with EDS for about 3 years, and before that I was 'mental'. That by now oh so familiar look flickered across her face, shock, horror, disbelief, comprehension, shame, understanding, compassion. Siobhan explained that actually although I was able to cope in hospitals as long as I thought I was going home, due to all my previous experiences staying overnight was beyond what I could cope with emotionally. I said I wasn't stupid and nor did I want to land her or the previous doctor in any hot water so if something was badly wrong on the scope then I would do as she wanted, but if it was 'just' spasming, then I wanted to go home. Please. Please.

She popped the scope in my mouth to warm it up, then into my nose and got me to swallow it down into my throat. I can think of better ways to spend a saturday night, but I've had far worse done to me. Fortunately everything was ok, nothing broken or torn inside my throat, just red, and a little swollen. The spasms were getting further apart and I was more able to cope when they did happen, so she was happy to let me go home if after a further 45 minutes without any oxygen I'd not had any problems. Siobhan was staying with me anyway, and promised to keep a close eye on me, having already chatted to the doctor earlier about handling these kind of issues, I suspect she may have agreed that in the absence of any repairable problem I'd be better off being cared for at home rather than by ward nurses rushed off their feet.

The doctor explained a little about laryngospasm, and said she was sure I'd dislocated my larynx and was now experiencing these spasms as a result of that. She was insistent that if I had any difficulty in breathing, had any noisy breathing, or got worse in any way that we were to come back in immediately.

She went went off, popping back in around 20 minutes later to check on me and give us a chance to thank her very much, then we waited another 30-45 minutes, with no further problems, and at the end of that time Toes reappeared and we started to sort ourselves out to go home.







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