£800 million over paid benefits

That's £800 million overpaid. For once claimants aren't being blamed, this £800 million has been overpaid during 2008-2009 entirely because of 'official error' by DWP staff. That figure has doubled since 2001-2002 when the overpayments due to 'official error' were £400 million.

The amount of benefits being UNDERpaid has also increased from £800 million in 2004-2005 to £1.2 billion last year.

I wonder if we'll see the BBC making prime time programmes about this issue in the same way they love to do for benefit fraudsters? Somehow I doubt it....

Blue Badge Blunders-Manchester & Bolton lead the way!

Manchester and Bolton councils have been prosecuting blue badge offenders for some time now. Their success alongside the Manchester Evening News being able to publish photographs naming and shaming blue badge offenders has led to them being named a centre of excellence by the government.

The government will provide £55million to fund this project. The government also want to make badges harder to forge....which is ironic considering their new 'tamper proof' badges fall apart within days, unlike the old 'non tamper proof' badges which not even the most determined 3 year old could get apart. Let's hope that £55 million gets spent more sensibly!

Blue Badge Blunders-Exhibit 2

With thanks to IforI

The first is the best example - access parking at BlueWater shopping Mall in Kent. Incidentally it has one of those huge disabled toilets with changing room/plinth and hoist. It's a square only for badge holders that has the unique feature of high visibility and extra width at the back for rear entry vehicles like mine - otherwise you reverse out and often get minced by the flow of traffic going through the car park.

The second is a retail park near Argos in Maidstone, Kent. An 'accessible' space in the corner of a car park! It involves parallel parking with full flow traffic entering the area right next to you. Funnily enough the space is usually vacant!

Happy Days...

It's still light at 5pm. Spring is on the way....

Begging

Having been boring myself into apathy over the whole Oxycontin issue I'm pleased to say my appointment at the Pain Clinic has come through. Only another two weeks to wait, though beyond 'keep tapering off the dose very gradually' I'm not sure what they're going to say. Probably working out what I want to achieve would be a good idea before getting to the appointment.

In other, equally unexciting news I finally got around to filling out the application for a Community Care Grant. Actually my neighbour filled it out, and I just had the joyful experience of listing all the reasons I am a cripple and why that means I should get grant money. It was almost, but not quite as much fun as filling out a DLA application form. I'm applying for a grant as I'm desperate for a Tempur Memory Foam Mattress and I've already wasted enough money on cheaper versions which don't work. I don't think Tempur would be nice enough to send me one for free, but after the earrings I'm ever hopeful. For the sheer hell of it I put a wish list of all the crip related things currently being saved up for and hope the CCG people take pity on me. Being a beggar is massively over rated.

I'm going to become an MP instead. It's absolutely the bestonly hope for any crip in need of equipment

Shiny!

I love free stuff, who doesn't? So when a nice lady emailed me to ask if I'd like to pick an item of jewelry from her online store there was only ever going to be one answer. Yes please!

Actually, I thought it was a bit odd at first. Cynical creature that I am I had to wonder if this was some new kind of elaborate phishing scam to seek out bloggers personal information. After all, this is not the world's most popular blog...and although there is a definite toilet fetish, it hasn't really included jewelry. No, not even how hideously ugly most medic alert jewelry items are.

This jewelry is definitely of the blingtastic variety. Medic alert jewelry has improved in the past few years, but blingtastic wouldn't be the first word that springs to mind to describe it. Not even a teeny tiny bit bling. And, well...I like bling. I simply refuse to wear something like this, let alone pay silly prices for the impractical and still ugly gold or silver versions. Having said that, if anyone wants to send me medic alert jewelry for free I might have to reconsider that. Until such time I'll carry on lusting after a diamond encrusted medic alert belly ring. A girl can dream!

But, back in reality there was a whole website of shiny, sparkly delights for me to pick from. Being incapable of making a decision about anything it took me aaaaages to decide. Eventually I settled upon a pair of very impractical but very ostentatiously shiny earrings. I must've been a magpie in a previous lifetime.

Within a few days the earrings arrived completely disproving my blogger phish theory. Getting free stuff beats cynicism any day.


Thank you LuShae Jewelry all I need now is somewhere suitably blingtastic to wear my new earrings!

Withdrawl continues...

I went to see my GP this afternoon. I've still not heard anything from Choose and Book so it's likely to be a few more weeks before I even know when the pain clinic appointment is. Its important for my GP to know what the situation is, particularly as they do the repeat prescriptions, something that's probably difficult to do if you don't know what dosage of a drug your patient is taking!

My GP was running late, there were a few people in the waiting room but only one person was moaning about why the doctors were running so far behind when there wasn't a crowded waiting room. When asked my opinion I suggested that was typical for good doctors who spend the amount of time needed with their patients rather than sticking to whatever random number of minutes the latest government dictat has informed them patient care should last. I should've saved my breath as the woman immediately went back to saying it wasn't good enough, especially when not many people were waiting. What the two have to do with each other I don't know, but it took all I had not to start into a rant about people in the UK having no idea how lucky we are to have universal health care. In some countries people will walk for days and days just to see a doctor, whilst many in the UK can't manage a 10 minute wait in a warm waiting room without moaning.

When I saw my GP she was unimpressed to hear that I didn't yet have a date for the pain clinic. She told me to give it a couple more weeks and if it still hasn't come through then the practice will start chasing it up on my behalf. Last night I dropped the Oxycontin by a further 10mg meaning I'm now taking a 20mg dose three times a day. Even a drop of 10mg is noticeable so the plan is to continue for another two or three weeks at 20mg three times a day, then to drop the dose by another 10mg, initially just every other day to try and limit the more unpleasant withdrawl symptoms which seem to really kick in around that point.

I'm still eating wheat, a sign of just how miserable the withdrawl symptoms are. Usually eating even small amounts of wheat or gluten is akin to pouring concrete down my throat...which is why I decided to give it a try! It's not without it's problems or complicating factors but anything which limits the 5am poop or puke wake up call is a good thing. Especially if it involves pizza and biscuits!

Bog Off-Exhibit 20-Airports get it right!

This is one of the accessible toilets in Manchester Airport, Terminal 3 to be precise. I'm an infrequent traveler, but in my limited experience, airports are one of the scant few places consistently managing to achieve high standards for disabled toilet facilities.

The standard of cleanliness in this particular toilet is high, and it has a really pleasant smell to it, similar to Cool Water aftershave, but without the obnoxious chemical tang and choking quality of most artificial scents.

The dark blue tiling is very easy on the eye, with none of the painful glare so common to tiled, white, brightly lit toilets. It also means the white of the furniture and grab rails stands out very clearly, catering for those with limited vision in a way most accessible bathroom facilities do not.

The help cord was a little harder to see as the red does not stand out so clearly against the dark blue, but it did at least reach down to the floor.

One of the nice features of this disabled toilet is the privacy curtain it's possible to draw around the actual toilet, particularly important in disabled toilets as unlike standard public toilets, disabled toilets usually open straight onto a public area. Having a privacy curtain means that a personal assistant can step outside the door without exposing any of the toilet related activities to the outer world!

I can't tell from the photos if this is one of the toilets in Manchester Airport which also has a shower feature. Unlike Copenhagen Airport, I've yet to spot a disabled toilet in Manchester Airport which provides changing table facilities for disabled adults.

There are some more unusual features to this disabled toilet, such as the facility to safely dispose of used needles, the yellow bin at my head height in the photo. It's great to see this kind of facility, but it's sited too high for a wheelchair user to be able to reach.

Last, but by no means least...it's wonderful not to have to worry about reapplying my lip gloss as there is a full length mirror in this disabled toilet. Well done to Manchester Airport!

HTLGN...with a difference-the verdict

8pm last night saw me eagerly awaiting the start of How to look good naked...with a difference. It's a show I've previously watched, but not for more than a few episodes, because frankly it gets boring very quickly. Women with low self esteem, tall, short, fat, thin, old, young...it all blurs into one not very memorable blur after you've seen enough of them weep on Gok's sympathetic shoulder then emerge triumphant and nude at the end. Even with my lack of short term memory it's too reminiscent of being a goldfish, so if the series hadn't been featuring a disabled woman it wouldn't have occurred to me to watch it.

I was still unsure what I thought throughout last night's show. The whole concept of disability as 'a difference' requiring it's own series unsettled me. That may have been why I found myself predisposed to dislike the show, but it didn't stop me enjoying it.

There were a few cringe worthy moments, particularly in the scenes filmed at the university, but overall Gok and his team have alot to be proud of. Although Occupational Therapists get very upset about such things, the scenes with Gok sitting on Tracy's knee whilst she self propelled the wheelchair were the closest to the reality of the way disabled people and their friends treat wheelchairs I've ever seen. The fashion advice tailored specifically to the needs of a full time wheelchair user with minor, inexpensive alterations to make jeans easy to put on, or sit comfortably in were excellent, as was the pimped wheelchair they gave Tracy before the final catwalk show. In fact the wheelchair was so cool I might have to apply to the series myself!

It was fantastic to see so many women with disabilities on a mainstream fashion show on prime time TV. That they still all fitted the ideal of slim and sexy could be viewed as disappointing but in a show particularly aiming to promote the idea of disabled people in fashion seems to me a stroke of genuis. After watching the show I was still left feeling that disability should not be considered to require it's own, different series when the concept is to bring women to a point of acceptance of their bodies, no matter how they look. In the future I want to see disabled women as part of the overall How to Look Good Naked series, but for a first step this show is a great stride forwards.

How to look good naked...with a difference

Series 6 of Gok Wan's 'How to look good naked...with a difference' starts at 8pm tonight on Channel 4. The difference being, you guessed it, it's all about disabled women.

I was actually contacted by several people to suggest I apply when the series first advertised for disabled women. As naked is one of the few states I'm completely confident in I felt that I probably wouldn't be the best person to apply, but rest assured when 'How to look confident in clothes as an impossibly big breasted shortarse' advertises for applicants I'll be there. Until such time I'll continue to worship Dolly Parton and Babs Windsor from a distance whilst ignoring their fashion 'sense'.

I'm not sure what I think about 'How to look good naked....with a difference'. Part of me thinks it's absolutely fantastic, building on the success of shows such as Britain's Missing Top Model it is great to see disabled women being featured more on television. Another part wonders, if this is already a series about teaching women to love their bodies the way they are, then why the need for an entire 'special' series featuring disabled women, shouldn't they simply be included as women who've had mastectomies have previously been.

I'm unusual in that I have gained most of my body confidence through becoming disabled. Like so many teenage girls I was eaten up with hatred and disgust for my body, which being bullied for my size and shape undoubtedly amplified. For many years I swung between hiding my shape under big baggy clothes and displaying it with tightly fitted clothes. It seemed not to matter which I did, I'd get equal amounts of abuse, as frequently from the people around me as strangers. I'm not sure what would have happened had I not started to become disabled in my early 20's.

Something changed in me the first time I needed assistance with personal care. I was working as a camp counselor at the time, living in the woods where fashion or appearance were so far down the list of priorities I wore pyjama bottoms and hiking boots until both fell apart. Whilst happy to be scuzzily dirty in an environment where we cooked over open fires and spent most of our days in and out of a lake, going to the doctor demanded a higher standard. Especially as my doctor was seriously, seriously sexy. And had mistaken me for a small child the first time he met me.

If he was to remain my surgeon I needed to get clean, which is not easy to do when you've just dislocated your shoulder and are forbidden from moving it around much. It's also a very embarrassing situation to be in. Not just for the cleanee, but often for the cleaner too. There was a distinct lack of volunteers to assist. Eventually the 16 year old girl employed to do the laundry offered to help, she had previously worked in an elderly care home and was used to assisting people with personal care. I've never forgotten her kindness helping me, she was so at ease with my nudity in a non threatening, non sexual way that I couldn't help be at ease myself. Over the following years I spent so much time having to strip to my bra for various medical professionals that I became used to being semi clad in a room full of strangers, which was later cemented by working as a glamour model.

That's also the secret to the success of 'How to look good naked'. Someone who is completely comfortable with nudity offering a sympathetic and supportive ear to enable and support women to address their body issues. For disabled women there may be other, more specific concerns such as suitable clothing for a wheelchair user, or how to be comfortable naked with drains or bags, but ultimately it's all about helping women become happy in their own skin. My hope is that next time there won't need to be a special, different series, just one which features all women disabled or not.

2010 not 1910

As the snow slowly melts away, my sanity slips back into place. It's at best tenuous but it is at least a start. Yesterday I made it outside, only for a few minutes, and not without a few scary near misses but the beauty of the frozen beach soothed my soul. Today an hour with girlfriends was calming despite the caffeine and emotional angst of the topics of conversation.

When I saw LC just before Xmas I was not doing well physically. I'd managed to get the Oxycontin down to 10mg td* but it was at great cost to both me and my blood pressure, so I was instructed to increase the Oxycontin back up whilst waiting for an urgent referral to the pain management consultant. LC, being an experienced consultant, wise to the bureaucratically bound ways of the NHS, actually phoned the pain management consultant during the appointment and dictated the letter there and then as well as ensuring the dictation tape went to the right place. As he said, otherwise it could be weeks before the letter was even typed up.

Although politicians seem determined to ignore doctors and nurses, they do tend to know a thing or two about where the real problems lie within the NHS.

So, I duly increased the Oxycontin and hoped it would absorb. I also unearthed some very out of date Zofran in my medication box and took them for a few days. Fortunately they seemed to do the trick and gave me enough of a break from the vomiting to eat some Christmas dinner. Over the holiday period I increased the Oxycontin up to 20mg td, and although the withdrawal symptoms didn't go they slowed down to a point allowing me to gradually get more rest. The cold weather caused such a massive increase in pain that I increased the nighttime dosage by another 10mg to where it is now at 20mg, 20mg, 30mg. With all the disruption caused by the weather I knew the referral would be delayed so waited until this week to start chasing it up.

The pain clinic told me they had no trace of any referral. The very helpful secretary I managed to speak to in rheumatology, which is based at a different hospital site to the pain clinic, initially advised me that the referral was yet to be typed and would be at least another week until it was. A further phone call unearthed the referral, which had been typed and posted before the christmas break. Yet another phone call, equipped with this knowledge, finally managed to unearth the referral sitting on the consultant's desk, and that it'll be at least a week before it is looked at and the consultant decides whether or not he'll see me.**

Politicians are constantly harping on about the value of the NHS and how determined they are to dismantle it and sell the parts to their money grubbing matessave it. Literally billions of pounds have been thrown at the doomed NHS IT project. It's 2010. 2010, not 1910. This one referral has taken 3 weeks to be typed, posted, received, opened and delivered to the right desk in a different hospital which is part of the same overall trust. Billions of pounds on IT, yet no decent system of email. That's before the consultant makes a decision to see the patient, at which point the referral goes back into the system, gets (I assume) posted to the Choose and Book team, who will then contact the patient to make an appointment. All this is for a referral classed as urgent.

Aside from the billions wasted on not fit for purpose IT, there are huge knock on costs to the welfare state while patients waiting for the bureaucracy to follow them around the system are forced to take time off work and claim benefits.





*td-3 times a day
**This bit strikes fear into my heart due to all the problems I had prior to being diagnosed.

Again my words are hiding, until I close my eyes, lose myself in the music and suddenly they arrive, tumbling over each other in their frantic race to the page, hindered by bendily uncooperative cold fingers.

Achelois sees this as a bold thing to do, a brave unveiling of self. She might be right, she's a wise woman, but for me it comes from a weaker place. I write what I can't say. No matter how close the friend, how sympathetic the ear, something within me chokes every time. Yet here, protected by a screen difficult feelings are easy to articulate.

The weeping continues. It's becoming very annoying. And boring. All these weeks of early morning puking and pooping have exhausted me. Whilst my Oxycontin intake increased slightly after seeing the LC it's just slowed the withdrawal symptoms, not removed them. On top of bone deep pain and fatigue lies a weighty blanket of sadness. Fortunately there is still a part of me which knows, were it not for this withdrawal process, I would be upset but not so completely devastated by events the way I currently am.

There is no shortage of food in my flat, just a shortage of interest in eating it coupled with a lack of spoons to make it. That concern has been removed again today by my neighbour delivering a plate of roast dinner to my door. My prescription medication has been collected by Ben, who will also do any shopping I need, as will the neighbours. I'm just particularly bad at either asking for or accepting help. Unfortunately my very dedicated and hard working carer worked herself into exhaustion in the run up to Christmas and is still really poorly. Which is why I've insisted that I'm absolutely fine every time she's asked, as she is far too unwell to be looking after anyone but herself.

My words have gone again. So perhaps this is all I'm supposed to say for today. Apart from to thank you for all your comments and support, they always help.

January Joltings

So, um, it's cold. But you knew that anyway. Pointless mentioning it it really. Except, it was words on a screen and I seem to be struggling to find them at the moment. Possibly all the words are hiding somewhere with my marbles, waiting until the first green shoots of spring before revealing themselves to me.

That, or a combination of things have finally driven me over the edge. Jury's out on that one, but I'll get back to you if I fall over any conclusive proof either way.

Mary has written an eminently sensible and informative post about the effect of the cold weather on impoverished cripples. You should really read it, it's full of interesting and useful facts about the benefits situation. A not so healthy winter of hypothermia some years back forever altered my perspective on heating costs. They aren't worth dying for. Not ever. After all, what can the utility companies do, sue me for the money? Good luck to them if they try, being assetless has its advantages. Unlike being cold, which is an all round shit state of affairs. Living so close to the beach is wonderful in summer, but in winter not so much. Fortunately my lovely landlord installed a new boiler in the run up to Christmas so I've thought it best to show my appreciation by not turning it off. At all.

My very nice neighbour delivered a hot meal to me this evening. This is a good job because for some self destructive reason I can't quite remember I decided to get into the left over bread from the Best Man's visit. I have eaten lots of crappy sliced white bread and very little else since then. Gluten is not my friend, no matter how many times I convince myself it does my body no harm at all and decide to reintroduce itbinge on doughnuts. Fortunately this time there have been no doughnuts but that is only because the ice prevents me from leaving the flat at all. The schools may be closed but it'll renew your faith in capitalism to hear the pot dealers are open for business as usual. Mine came round to take me food shopping too. That was a few days ago and my joints are still seriously pissed off at me about it.

I moved into the flat a year ago this weekend. I'm not sure where the year has gone. Actually I'm not sure what happened to the last 1015 years now I think about it. I had some ludicrous notion that the next 10 years had to be better, because really, it's definitely my turn. It was probably that which tempted fate enough to make me start sobbing by lunchtime on New Year's Day, and carry on fairly steadily ever since. Well, that, the gluten, the oxycontin withdrawl, and cabin fever. Roll on spring!

Bendy Body Bits!

This impressive example of a hypermobile shoulder actually belongs to The Best Man, though the poor quality photography skills are all down to yours truly.



Proving yet again that either Ehlers Danlos Syndromes and Hypermobility Syndromes are either not the medical zebras they are alleged to be, or that I just have some weird bendy seeker gene.

Bog Off-The Meeja Luvvy exhibit

Thanks to a secret source at The Guardian, Benefit Scrounging Scum is delighted to bring you Bog Off!-The Meeja Luvvy Exhibit.




'It was a bit of a shock when I first opened the door-there were paper towels, toilet paper and other debris all over the floor. It was obvious no-one had been in to clean for a while and it was very off putting, not to mention potentially dangerous for anyone wobbly on their feet, or with a visual impairment.



The alarm cord was looped well above the handrail, so anyone who fell on the floor would have been unable to reach to call for assistance.


The positive points were that despite all the mess, both the toilet and handbasin were clean and it didn't smell in there. There was also a massive mirror, suitable for people of any heights, whether chair users or not.


Although the space was just about adequate for a wheelchair user, the soap dispenser and hot air dryers were probably slightly too high for anyone using a chair.

Overall I'd give it a 7/10, but had it not been so messy and the alarm cord not looped up it would have merited an 8.5/10. The building is huge so it's almost certain there are other disabled toilets. Let's hope the one I used, which was on the main newsroom floor was an aberration.'

Perhaps someone at The Guardian will be able to let BSS know if that's the case?

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.

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.

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.

New Deal in action

The Future Is Uncertain. Another insightful post from Brainblogger.

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.

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.

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.

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!

The birds and the birds

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!

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

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 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!

Skyn to Skyn

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!

For all you doubters...

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

Bog Off Down Under!

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

Hej!

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

The Deal with Disability

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!

Change of plan

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.

The first 24 hours...

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.

The plan...

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.

Shake, rattle and roll

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!