While I'm away.....

12/30/2008 12:16:00 pm BenefitScroungingScum 4 Comments

You may find these posts interesting:

And a scally in a hoodie........

Efficiency and progress is ours once more

Disabled Rights Delay

Clairwil's Benefit Reform

UK 'must ratify' disability pact

I'll update with links if and when I have the chance.


Movin' on up

12/30/2008 10:42:00 am BenefitScroungingScum 9 Comments

Are you all sitting comfortably? Then I'll begin......

I've found a flat! A ground floor flat that I can afford. In a great location, with a great view. Well, not from the flat itself, but this is the view from standing in the middle of the road just outside the flat. Looks a bit wet and grim in the photo with the tide out, but it'll be fantastic for death walking. I shall probably invent a new death walking experience as it's hip breaking weather a bit windy all year round. Mary Poppins eat your heart out!

The flat was the only property I've seen advertised with a rent which housing benefit or Local Housing Allowance as it will be when I move will cover. Outside of London and the kind of insane rents paid by local authorities reported with glee by the Daily Mail,
the situation for those reliant upon HB or LHA is much the same as it's always been, ie mostly significant rent shortfalls. So it's an enormous relief to find a flat which is on the ground floor, affordable and doesn't object to kitty#2. I do have some significant concerns, the electricity is on a coin meter for one. Total and utter nightmare even if it is set at the same Kwh rate as the electricity suppliers charge. There is also no bath, just a shower which may be a problem. All jokes aside my biggest concern is that so close to the beach the wind is very strong and I may well not be able to get in or out of the flat for periods of time. It's all very exciting though!

The next few weeks are ridiculously busy for me with packing, moving, trip to see the bendy people specialist and more, so I don't expect to be back posting until after the 16th of January, and that is assuming I've got broadband connected by then. Happy New Year to you all, and I'll be back posting from my new home as soon as I can.


You know you're getting old...

12/25/2008 11:47:00 am BenefitScroungingScum 15 Comments

.....when you receive thermal bed socks and a plastic cat statue for Christmas....from the same person who in a previous year gifted you crotchless panties....


Happy Holidays

12/24/2008 07:34:00 pm BenefitScroungingScum 7 Comments

Thank you to everyone who reads Benefit Scrounger. This is a difficult time of year for many people so no festive images, just best wishes and love to you all.


12/23/2008 05:09:00 pm BenefitScroungingScum 2 Comments

Today's Daily Mail contains an article about Hypermobility Syndrome. For accurate medical information about Hypermobility Syndrome I always recommend the Hypermobility Syndrome Association.


Bog Off! Exhibit 9-Go Elsewhere!

12/22/2008 05:02:00 pm BenefitScroungingScum 5 Comments

Oh my, the relief! Not of finding a loo when you really need one...but the relief of not being the only one with a toilet obsession....

Photos to follow....


Bog Off! Exhibit 8 - How the other half live/The Scottish Parliament

12/17/2008 05:34:00 pm BenefitScroungingScum 7 Comments

Drum roll please...This extra special edition of Bog Off! is delighted to bring you photos of one of the disabled loos in The Scottish Parliament. Benefit Scrounging Scum is clearly going up in the world! If anyone can provide photos of an accessible toilet in The Houses of Parliament or Welsh Assembley that would be fantastic. Pretty please?

Well, these photos certainly explain a few things, and I don't mean just the cost of building The Scottish Parliament. Far more significantly these photos give an insight into how the Scottish MP's are likely to view accessibility, especially important with the changes the Welfare Reform Act is pushing through.

There are plenty of other Bog Off! exhibits for people to get a good idea of the general standard of disabled toilets...and this certainly isn't it. Although even these toilets could be improved upon, they are world's away from the small, dirty, mirrorless, unlockable, baby changing facilities which masquerade as accessible toilets in most places.

Whilst we crips out and about in the world know that, I don't suppose your typical MP spends much time hanging around disabled loos. Ignoring the obvious cottaging type jokes, if this is an example of the kind of accessible facilitie
s MP's regularly see, many of the changes in the Welfare Reform Act suddenly start to make sense.

No, don't fa
int, I'm not agreeing with the WRA or proposing it will do anything other than cost the taxpayer more money. I am however suddenly able to see why MP's think only the most severely disabled should be exempt from the workplace. Accessible facilities of such a high standard would lead to the false impression that these standards are the norm and therefore leave MP's unable to see what many disabled people's barriers to work are.

Sadly, back in the real world where even supposedly accessible jobcentres are inaccess
ible to your average cripple we are the ones who are demonised and victimised by the WRA, voted upon by MP's with no idea of reality.

I'm very grateful to Jim Millar for providing these photos of one of the disabled toilets in the Scottish Parliament. All views expressed here are that of Bendy Girl not Jim Millar.


That bitch!

12/16/2008 12:41:00 pm BenefitScroungingScum 14 Comments

Ooo, I'm so cross. Proper, hormone fuelled, tantrum style cross. Happily I have learnt not to stamp my feet or kick things when this cross as inevitably inanimate objects defeat me. Like the Thai fighting stick I got walloped with at the weekend. Wielded by a trollied off duty copper, who, to his credit, did sober up remarkably quickly when he realised he'd smacked a 4'8 woman with a weapon. Anyway, that's not why I'm cross. It gets worse...

The puking is back, coinciding perfectly with my period and so confirming the hormone spike floppy tummy theory. Unfortunately it also coincided perfectly with a much planned visit from TLI. Our planning clearly wasn't up to standard as TLI was paged only a few hours after arriving and had to drive more hundreds of miles in the night to get to a patient I'd explained had better damn well be about to die otherwise I'd be ensuring they were. The only silver lining to this cloud I managed to find is that it meant TLI was not there the following morning to witness my vomiting half way down the stairs. Into a yoghurt pot. There is a reason sick bowls are shaped like...sick bowls and not yoghurt pots which are sadly not up to the job. I plan to send a report to James Purnell on the subject of being unfit for purpose. I don't expect him to spot the similarities. After all, yoghurt pots are vastly more evolved than he. They know what they're good for and being puked in ain't it. That is a job we should reserve for politicians. It's about time they did something worthwhile, and think of the money the NHS would save.

Anyway, the puking is not why I'm cross. Oh noes. I was initially cross when rudely awoken this morning by the sound of drilling from my neighbours. I'd been aiming to sleep through the worst bit of morning sickness** but instead found myself throwing up again. I managed to avoid the stair carpet this time..and the cat, though that was a close miss. You'd think she'd learn...

Various projectiled body fluids later I was cheered by a phone call from Roland. For a couple of seconds until I was plunged back into fury as he called to moan about his girlfriend again. She needs a name so Porn Star it is. I've seen parts of that woman's anatomy I didn't know existed on myself, but that's not anger inducing, just too much information. The saga of Porn Star has been going on for months now, and along with Roland's other friends I've moved from sympathy and support to downright brutal bluntness. I should think it's quite difficult to inspire all your boyfriend's friends to call you a selfish bitch but Porn Star achieves that with ease. Still, we all need a talent. And hers is admittedly alot better than vomiting into yoghurt pots.

Roland made me promise not to publicly humiliate Porn Star for her latest antics as that was my preferred course of action. Still, I think calling her Porn Star is more anonymity than she deserves. Porn Star has a general disregard for pretty much anything that isn't herself. I assume that is the reason she gets strings of fines for speeding, illegal parking, erratic driving type incidents. Impressive for the girlfriend of a traffic policeman. She's sunk to new lows this time though. Porn Star was given a ticket for parking in a disabled bay without having a valid blue badge. Objecting to the £60 fine Porn Star bitched and moaned until Roland gave in and wrote a letter of appeal that he claims he hoped was bad enough for the company to put straight into the 'bullshit bin' but enough to satisfy Porn Star he was 'sortin' it'***.

Now, companies who manage privately owned car parks have been held up in the media enough times for refusing to back down when they've fined genuine blue badge holders for failing to display their badge properly, so I was quite pleased to hear of this companies response to the letter. They would write off the fine, but wanted a photocopy of the blue badge Porn Star claimed belonged to the friend she was taking shopping and forgot to display to show it was a genuine mistake. Which is where I got dragged in....

Yes, Porn Star had requested Roland acquire a photocopy of a genuine blue badge. Mine. I suggested I'd be more than happy to tell Porn Star to get fucked myself if Roland did not wish to do so, and that I was disgusted that Roland himself has stooped so low. Porn Star I expect this from. Roland I expect better. Still, the man is besotted and falls for everything Porn Star says hook, line and sinker. We've all been there before, and considering any of the many, many ridiculous things I have done in my time to please some bloke I was convinced to be the source of the sun, I don't feel too inclined to kick Roland for the same thing. Well, not tooooo much anyway.

After all that the bloody hammering wasn't my neighbour at all, it was the for sale sign going up. They've not even been to measure up yet! Then, to finish my temper beautifully I dislocated my knee asking it to commit the unreasonable activity of holding me upright. I'm going back to bed!

*no dead patients
**Ah the irony of morning sickness without the pregnancy.
***I know, I know. Roland is a mug


Proper Planning and Preparation Prevents Piss Poor Performance...

12/12/2008 03:27:00 pm BenefitScroungingScum 3 Comments

...unless you're a member of the government...they just go for the piss poor part....

like deporting the family of a war hero.

RIP Colour Sergeant Dura.


Ehlers Danlos Syndrome:Its no freak show

12/11/2008 04:23:00 pm BenefitScroungingScum 10 Comments

Blogger Veronica is undergoing some investigations to see whether the health problems which have affected her life for many years could all be due to Ehlers Danlos Syndrome or Hypermobility Syndrome. Some time ago I suggested to Kim that it might be an idea to check and see if her daughter Veronica was hypermobile. It is distressingly typical for people with EDS not to be diagnosed until adulthood, and what is worse, often after many years of disbelief by medical professionals, family or friends. Now, after many years of health problems it's looking like Veronica may well have issues relating to her hypermobility.

I have long believed that the reasons diagnosis of Ehlers Danlos Syndrome or Hypermobility Syndrome are so rarely made in timely fashion are inextricably linked to the teaching doctors receive on these conditions whilst at medical school. Students have traditionally been taught that EDS is incredibly rare and they would be unlikely to see someone with it in their entire careers. Couple with that the kind of extreme images shown here which are typical examples of those shown to students and the philosophy of "If you hear hoofbeats think horses not zebras" and the problem becomes quite clear.

Reality is somewhat different though. EDS is now widely accepted to be more prevalent than previously thought, 1 in 5000 people are the current figures although that does not include the milder Hypermobility Syndrome which is thought to be far more common. Personal experience has taught me both that I am a magnet for other bendy people and that so many bendy people randomly knowing each other probably indicates HMS is a very common condition with very poor diagnosis rates and even EDS is not the rare condition doctors are taught to believe it is.

One feature commonly missed by doctors is that of the blue tinge EDS patients can exhibit, commonly seen in sclera, skin or teeth. From images I've seen of the blue colouring found in conditions such as Osteogenesis Imperfecta, the blue found in EDS tends to be less startling and more likely to be widespread throughout the body. This image is of the kind of blue 'glow' I display in certain lights. It's both more subtle than the above images might lead medical professionals to expect and importantly, far more representative of the overall appearance of the
vast majority of people with EDS.


The elephant in the room

12/10/2008 05:42:00 pm BenefitScroungingScum 15 Comments

I'm working on a more in depth analysis of the current welfare reforms, specifically what really needs to be done to reform the benefits system in a workable and hopefully equitable fashion. Whilst that is still in draft form there is one very important point I hope to make. Currently the wrong benefits and the wrong groups of people are being targeted.

Disabled people, on the whole, tend not to be the most noticeable group. Wheelchairs, white sticks or window licking are probably the most common symbols people associate with disability, and are all very visible, albeit possibly not to anyone needing a white stick*. The point being that for most people, linked in their mind with disability are visible symbols. The flaw being that the overwhelming majority of disabled people do not have any visible signs of their disability and then there's a whole other group who do but are too busy being unwell/disabled to be out and about much.

It is easy to see how those common misperceptions could lead to a wider and more sinister misconception that there are very few genuinely disabled people and therefore very few genuine benefits claimants compared to the suddenly all too visible Karen Matthews style minority. After all, aren't screaming Chav mum's with fags hanging out their mouths everywhere clearly draining the very life from hard working tax payers?

As someone genuinely reliant upon the welfare state this constant barrage of abuse against benefit claimants is terrifying. The government promise to get a million people off Incapacity Benefit and into work even more so. That promise relies heavily on the assumption that the vast majority of Incapacity Benefit recipients are either workshy, lazy, fraudulent or a bit 'stressed'. An awful lot are claimed to have a 'bad back' too. The frightening bit is that this is just not a true representation of Incapacity Benefit claimants.

Ironically today the children of courage awards were at 10 Downing Street. Tonight footage of an 'assisted suicide' will be shown on television. Why do we recognise and celebrate the achievements of such children or battle to save babies born at 23 weeks whilst refusing to recognise those children grow up to be adults? Adults with disabilities.

This morning my 'surrogate mum' came round to have a bit of a cry. Her beloved husband, a man who served his country for 25 years and worked for many more is dying. He has cerebellar ataxia. This afternoon I met a mum with her bright, happy, beautiful baby girl. Who is about to be diagnosed with Hirschsprung's disease. I've never met anyone who is fraudulently claiming Incapacity Benefit**, but I know large numbers of young adults who are claiming Jobseeker's Allowance and also working. They leave education and as soon as they are able, living at home with their parents, sign on and work for cash in hand. They won't be affected by the current reform's though. All are on New Deal, all are going through the government mandated jobseeking process and all are committing benefit fraud. It's just not called benefit fraud when you're white, middle class and have taxpaying parents, then it's called 'being entitled to it'.

These current 'reforms' insist upon targeting Incapacity Benefit claimants and single mothers and as such are doomed to fail. At great cost to the tax payer. Those job brokers don't come cheap.

Deciding that it is no longer acceptable for society to pay our young people not to work when they leave school, college or university could work out a hell of a lot cheaper though. If any politician has the courage to confront the real issues instead of demonising the most vulnerable in society that is.

I'm not suggesting benefit fraud is not an important issue. It is, of course it is. Reform of the system is overwhelmingly needed, but more so is an honest discussion of the issues. Namely whether or not we as a country wish to continue providing a safety net to the most vulnerable, and assuming that is the case, how we wish it to work. The current 'reforms' are disingenuous at best and downright fraudulent at worst.

*Yes, you are supposed to laugh. Political correctness helped us into this mess
** I am not suggesting that there aren't plenty. Just not the numbers the govt would like you to believe. Single mothers do not receive Incapacity Benefit.


More Mac But Still No Cheez

12/09/2008 04:55:00 pm BenefitScroungingScum 10 Comments

Apologies for the long delay in posting. I am no more cripped up than usual but because of the housing situation I'm still very much busier than usual. Thank you for all the emails and expressions of concern, I may not be able to reply to comments properly at the moment but I read each and every one and they all make a huge difference.

The good news is I've sold lots of old clothes on ebay, the bad news is the estate agents came today to value the house. Whilst they were here I asked about rental properties which I was told were readily available until I mentioned they would have to be below £500 a month when the agent went white and insisted it was not her area of expertise. I haven't quite got the inner mental strength required to explain less than £400 a month would be more realistic for what I can afford, even if it is laughable considering the rental market conditions. The letter I received from the local authority informing me they were reducing my housing benefit because the value of the property had lowered should warm anyone's cockles. Especially as they took that action some months prior to the credit crunch but still managed to 'forget' the millions they had sitting in Icelandic banks.

In other news having survived all these years as a borked person without anyone trying to heal me, I've now had two such offers within a month. The first seemed to amuse many people, the second, volunteered by a person known locally as Paedo Paul-well, his nickname should tell you all you need know about the veracity of his opinions, but if not...

I met Paedo Paul through a mutual friend. For legal reasons I should explain that no-one suspects him of actual paedophilia but his strong desire for young looking Thai women is no secret. And yes, such men are always irresistibly attracted to me. It's the ringlets and height I think, unfortunately neither of which are within my power to change. Anyway, Paedo Paul has an amazing herbalist doctor. A doctor who PP claims can cure anything. A.N.Y.T.H.I.N.G. I suggested that genetic disorders might not be within the herbalist doctor's remit but Paedo Paul was not deterred. Clearly he likes his women not only to look unfeasibly young but be of the non borked variety too. And yes, of course he looks like a less attractive Frank Gallagher...Paedo Paul is not on benefits though, so obviously has far higher social standing than those of us the media currently considers the devil incarnate. Ah the irony of paedophiles being preferable to us disabled people benefit claiming, society destroying economic drains. Never let it be said I don't know my place.

Anyway, Paedo Paul was determined his herbalist doctor could cure me. Proper cure mind, none of your fancy schmanzy 'healing' for this guy. Who by the way is not a medical doctor. In case you'd not guessed that already. I always check because there are some medical doctors also preying onworking as alternative therapists the vulnerable benefit stealing scumbags The easiest thing to do in such situations is to smile sweetly and provide the required information as generally refusing just prolongs the situation and means having to listen to endless bullshit various justifications of why their healer is better than my bendy people specialist*. In this particular case that was the correct spelling of Ehlers Danlos Syndrome (pronounced Ay-lers if anyone has wondered) I am now waiting with baited breath to find out what this con artist healer recommends for eliminating genetic disorders. Whatever herbal remedybullshit they insist will work is bound to be alot less fun than my chosen herbal cure all.

That's all for now, but bait your breath** for more forthcoming Bog Off! toilet photos...the Scottish Parliament no less. Thank you Jim. Oh, and a photo of me. If you're really unlucky that is!

* Yes, it is looking likely we will lose the only full time specialist for EDS and HMS in the UK. Whilst there is another based in London he is well past retirement age now and the hoped for replacement was no longer to replace last I heard. Even so the hoped for replacement is more interested in HMS and not the management of those of us lucky enough to be completely fucked. If any doctors are interested in such specialisation it is worth knowing that it is a specialty in which your patients will adore you-an unusual situation in the modern NHS.
** Don't hold it though...at my current posting speed you'll be very deaded.



11/24/2008 02:42:00 pm BenefitScroungingScum 15 Comments

After a fairly miserable 10 days I went to see my GP this morning. Gastrointestinal problems are more common in people with Ehlers Danlos Syndrome than they are in the general population, thought to be because the digestive organs are supported by and partly made up of connective tissue. As is typical on a monday morning all the appointments had been taken by 8.31am but as is also typical for the practice I'm registered with they will always make sure patients are seen if it is urgent/emergent.

After a quick explanation of symptoms and a comment from my GP about my having lost weight I was on my way to the chemist to pick up the Nexium and Motilium I'd been prescribed. As ever I was struck by the need for continuity of care in GP practice, something the current government seem desperate to destroy. Simple things like my GP being able to tell I have lost weight without having to weigh me or consult records are perhaps difficult to quantify but important for patient care and I expect also important in saving time and money.

The Love Interest (TLI) was eager to know how I'd got on, and whilst we were chatting about it he started to reveal a little of his feelings about the situation. Much is made of physical symptoms but the emotional consequences of ill health have far more devastating effects, not just on the person with the condition but those around them. It is very difficult to form and/or maintain personal relationships when also dealing with a chronic condition, but it is also very difficult for those who care for us.

TLI mentioned how difficult he finds not being able to 'wave a magic wand' and make everything better, and how he is trying to think through whether he will be able to cope with that. I appreciate his honesty but I also appreciate how much he does help to make things better just by supporting me emotionally, something far more valuable than any magic wand could ever be. If anyone does have any insight into how to reassure a supportive friend/partner/family member in this kind of situation then I'd be really grateful for your thoughts.

Having got all that out of the way it's time for the unrelated scandalous gossip. Siobhan came to stay this weekend, which of course meant I was ill. Perhaps she's a jinx? The first occasion she came to stay I ended up in A&E and I have been ill on the other occasions. Despite that we had a lovely weekend together having girlie time, catching up on gossip, watching dvd's and looking at each others photos on facebook.

Like many of us Siobhan has reconnected with old school friends via facebook (it seems so much better for that than friend's reunited) Siobhan lives in a different part of the country and our different groups of friends have no connection. Or so we thought. We were looking through photos of one of the (many, many) men Siobhan is currently interested in, and there in amongst more innocuous photos of this guy's 30th birthday was Roland's girlfriend. Naughty nurse outfit and all!

I recognised her immediately and would have done so even if I had not already known she works as a stripper, but there was something really bizarre about seeing photos of her in that context. Unfortunately it's one of those awkward situations where Roland is completely besotted with this woman and without exception all his friends dislike her. No, not because of the stripping, we're far too broad minded a group to care about things like that. Roland is completely head over heels and will do anything for this woman, he sends little presents to her workplace if she's having a bad day, and practically does an enormous amount to help her out. Roland is still having a really hard time after the car accident he was in, he's unable to go back to work yet and so he's scared, depressed and unhappy. His girlfriend doesn't even seem to have noticed and I've lost count of the number of times he's cried on my shoulder. Literally.

Ironically Roland's physiotherapist has just told him she believes him to be suffering from Hypermobility Syndrome*. I suggested that some months back but I wish I had been wrong.

*Hypermobility Syndrome (HMS) is generally considered to be a milder version of the old EDS type III now called Hypermobile EDS. Some experts consider the two names to be interchangeable and that it is the same condition, others view them as distinct entities. For what it's worth my personal opinion is that they are distinct conditions. Personal experience suggests to me that HMS is very common although just as poorly recognised as EDS and is a much more benign condition than EDS. Unfortunately many of those diagnosed with HMS struggle with multi system symptoms but struggle to have that recognised because it's 'just' hypermobility a struggle which would likely be unnecessary if they had a label of EDS.


Bog Off! Exhibits 6 & 7, The Don't fall Edition

11/19/2008 06:55:00 pm BenefitScroungingScum 11 Comments

In honour of World Toilet Day '08 Benefit Scrounging Scum is delighted to bring you a double exhibit -The Don't Fall on the floor whatever you do edition

At first glance both these toilets look pretty good. Well, unless you're a disabled person who actually wants to use them that is.

Make sure you don't smack your head or in fact any part of your anatomy on your way in to this first exhibit found in Nandos. The sticky out metal thing on the wall had something to do with the baby changing facilities and nothing to do with the features supposedly for disabled people. Oh, and there weren't any facilities for adults who need to be laid down and assisted with their continence products, but that's no great surprise because typically there aren't any.

Like most of the loos featured in Bog Off! these examples seem to conform to the size requirements, and probably all claim to be DDA compliant (Disability Discrimination Act)

The problem being that once there's been a bin placed on
the floor, or as in many places a baby changing station, what would anyway be a very small space in which to turn a wheelchair and transfer becomes an exercise in contortionism. Whilst those of us with EDS might not find that too problematic I very much doubt the rest of the disabled population feels the same way.

Mirrors are very much to be welcomed, but aren't of much use unless full length or lowered to the appropriate height for someone seated.

There is a reason accessible toilets have to have a pull cord and it is a simple reason. These are facilities for people with disabilities and p
eople with disabilities tend to have more falls than the wider population. I'd hazard a guess and say that is particularly likely to happen in conditions where the access is less than perfect. So it does help if the cord to summon assistance is easily reachable from the floor rather than say being looped around one of the grab bars as in both these examples.

That's unless yo
u're an M&S customer in which case be warned, summoning assistance via the cord for that very purpose may just well earn you a ban from all M&S stores. All I can say is M&S have clearly been taking lessons from Social Services in how to avoid providing facilities for disabled people. That's right, blame it on Health and Safety.


Mac an Cheez plz!

11/17/2008 06:25:00 pm BenefitScroungingScum 29 Comments

I have been healed! Yes, that's right, healed! Well, according to the person who ever so 'kindly' did the healing I have. Skeptical? You should be.

So, how did this miraculous healing event come about? Are you sitting comfortably? Then I'll begin...

A couple of weeks ago I met a friend of a friend, a delightful American lady. It turned out we shared some interests, including blogging and so we swapped details and became facebook friends. On Saturday I was invited to the lovely lady's home for dinner.

It was only when I arrived that I realised it was a dinner party. Having only met my new friend once previously I didn't know anyone, but my heart still sank when I first entered the kitchen and heard another guest earnestly describing how everywhere she lived was always haunted and what the various ghosts did. I mumbled something about preferring the rational and hypnagogic dreams when asked for my opinion but mainly kept my mouth shut, y'know being in someone else's home and all that. I tend to believe in the Voltaire misquote, "I disapprove of what you say, but will defend to the death your right to say it" and so I reminded myself of that and gritted my teeth and went to meet the other guests.

Without exception they were grolies, I was particularly mystified and revoltedimpressed by the earnest, white, middle class, male African drumming instructor. Quite what connection he had with Africa I never did elicit but he was into ghosts too. Unsurprising I suppose as ghost lady no.1 was his partner. The other guests were a yoga teacher and a man who defrauds people for a livingis a life coach. It was white, over privileged, upper middle class hell. And vegetarian. My teeth are yet to recover from so much grinding.

Dinner was lovely if you like lentils and tofu. I like chocolate, chips and burgers, but happily I'd brought chocolate with me, ostensibly for the hostess but I ate most of it afterinstead of dinner.

Having Ehlers Danlos Syndrome means my disability is pretty much invisible and it's not something I tend to bring up unless asked about it or most commonly, when I'm asked what I do for a living. I usually just say something about having a genetic disorder which makes my joints unstable and leave it at that so if people are interested they can ask. I had been asked the occupation question by several people and particularly Mr Life Coach(MLC), but after dinner the talk turned to healing.

I was struggling to get up from the sofa which was noticed by MLC who commented that I could 'probably do with some healing'. As it was kindly offered and I couldn't see a way to politely refuse I accepted thinking it couldn't do any harm.

So MLC suggested I get into a comfortable position on the sofa, put his hands on my hip and told me to put my hands together infront of me, in a sort of open handed prayer type posture. So far so not too awful I thought, but then he started to speak.

MLC instructed me to repeat after him something along the lines of, 'I have a problem, I want this problem to change, this problem will change' Again I thought, fair enough, the power of positive suggestion being particularly important in eliciting money from vulnerable peopleany kind of recovery. So when MLC first asked me what I had done wrong to cause this problem I didn't understand and just said 'well, I have a genetic disorder'. That wasn't the answer MLC was looking for though as he said it again, more emphatically. "What have you done wrong to cause this problem" Being slow to catch on I mumbled about genetics and DNA. "No" he said again,
"What have you done wrong to cause this problem".

It was at that point I knew the only way out of the situation was to start making things up, but not before I'd had that momentary feeling of guilt for causing my own disability. Hmm, perhaps MLC went to the same school of communication as my old GP? Then MLC told me that his shaman was telling him off for not asking my full consent. I'm still not sure if his shaman heard my brain suggesting it fuck off, but I'm going to assume not. Especially as my more socially acceptable side told my mouth behave and give consent.

I managed to come up with a couple of reasons I'd brought a dislocating hip upon myself, though oddly having screwy collagen was no more acceptable a reason than genetics or DNA had been. Things like lacking self confidence and inner strength however were deemed as excellent reasons for my hip to dislocate. I have since told my hip, shoulder, jaw, rib, knee, take your pick joint, that it lacks self belief but, unsurprisingly my hip, shoulder, jaw, rib, knee, take your pick joint poo-poohed that idea and dislocated itself instead.

So, lacking in enough self confidence to leave I allowed the 'healing' to continue. It consisted of my having to come up with various reasons I'd brought this all upon myself, tapping 7 times on various parts of my body and 7 deep breaths in through the nose and out through the mouth. At the end of which I felt a bit lightheaded and therefore slow on the uptake when asked to rate my pain level between 1 and 10. Silly me, I had always assumed an honest answer was the only right answer to such a question. It took three repeats of emphasising my guilt, tapping and breathing to be told this would continue until the answer was 0. At which point my pain had a miraculous curing event and got itself down to a 0 pdq.

Not quick enough to avoid several more rounds of guilt stating, tapping and hyperventilating. 'What can I say?', I'm a slow learner. Especially when distracted by chocolate and the thought of proper painkilling drugs.

Eventually though, I was declared cured. Yes, really cured. Apparently all I had to do was keep repeating the exercise any time the pain or symptoms came back and they'd go away again. I'm not too sure what MLC made of me then dislocating my hip into the yoga teacher's hand to explain exactly what I meant by 'unstable joints'. Probably similar to the yoga teacher who emphasised people can never be too flexible and suggested I attend a class. MLC gave me his card and told me he would email the exercise to me.

I thanked MLC, because really, what else could I do in someone else's house, and it was a kind offer for a service that
judging by his non environmentally friendly executive car, I assume usually costs quite alot of money. Fortunately the entire group then focused their energies upon changing the direction of the Californian fire by controlling the wind and so were distracted from my miraculous non healing healing event.*

I blame the 'healing' for my dislocating shoulder pulling the shower curtain, complete with metal pole onto my head the following morning. Concussion is a wonderful thing and certainly more real than this kind of 'healing' could ever be.

Next time I find myself in such a situation I plan to get incredibly drunk and explain sexual positions in explicit detail. Again. I find it ensures one never gets a second invitation, and hey, if it ever does it'll probably be a party worth attending.

*Yes really. D'you think I'm capable of making this stuff up?!


11/10/2008 06:05:00 pm BenefitScroungingScum 16 Comments

Time is flying by at the moment. Thank you to everyone who expressed concern for me, I am ok, back to my usual cheerful self, just busy and lacking time to blog!

Life is back on it's usual rollercoaster of good, bad and ugly. One of the most daunting things about moving is packing everything up, especially so when you are very limited physically in what you can do. When it comes to actually moving I have plenty of lovely friends who've already volunteered themselves for the removal task force, but of course I still have to get everything packed up for that to happen. I'm trying to do small amounts every day, and I'm selling what I can on ebay. It's all going well, but means I just haven't had the energy to blog.

It was my birthday last week. The day itself passed in a blur. Initially I thought I had picked up some sort of bug but I soon realised all the symptoms I was experiencing could be put down to several days of increased instability in my spine and pelvis. Ehlers Danlos Syndrome tends to be thought of as something that 'just' affects the joints although anyone with the condition could come up with multiple reasons that isn't the case. Something I understand more now I understand the condition more is just how many other symptoms dislocating major joints can cause, especially relating to pelvic or spinal instability. I tend to find that if I've had multiple spinal dislocations or subluxes then problems with bladder and bowels go hand in hand.

Although my actual birthday was a write off for those reasons, I went out for dinner with Roland, Red, Ben, and a couple of other friends at the weekend which was a lovely night and more than made up for a few dislocating joints!


Tomorrow's another day

11/04/2008 08:53:00 pm BenefitScroungingScum 20 Comments

If there is one phrase guaranteed to make me laugh, even if only inwardly, it is “I don’t know how you do it”. I always laugh because, really, what choice is there? Not coping is a luxury that just doesn’t apply to disability. It’s a bit like running away, no matter how fast or far you go, you always take your problems with you.

Happiness is being able to find pleasure in the things around you, the hidden secret of the disabled world of course is that we have the luxury of time to take that pleasure. Being positive though is something different, and sometimes that can feel impossible.

Its all too easy to feel overwhelmed when dealing with multiple stressful situations, and as everyone will know, when that happens it becomes very difficult to keep away the normal niggles of self doubt. In my case that is feelings of inadequacy. Unemployment is well known for helping people to lose their sense of self worth and no matter how well much I believe that what someone does is no measure of who they are, in relation to myself, I can’t help but feel that it is.

I’ve never been bitter because I’ve worked hard to make sure I didn’t become so, but at times like now I find it so difficult not to be angry. I don’t mind having Ehlers Danlos Syndrome, I don’t see it as a why me, more why not me? I do mind what I was put through before I was diagnosed, and particularly how it’s impacted my life.

I’m now at that age where people have established their careers, and suddenly everyone seems to be having children. It doesn’t help that I come from an area, and particularly a family keen to link worth with status. It isn’t that I begrudge anyone what they have, but when I feel this way I begrudge the opportunities taken away from me.

I feel very vulnerable and very alone, not because of anything my friends have or haven’t done, but because ultimately, as we all are, I am on my own in this. And it’s a lonely place to be.


11/04/2008 08:47:00 pm BenefitScroungingScum 2 Comments

I realised today, that for various reasons I have started to censor what I write about myself. This blog has always been intended as an honest account of life lived within the benefits system and I need to get back to that honesty.

Writing helps, it is like lifting the burden of isolation which goes hand in hand with any difficult situation. I had lost track of how much.


Don't It Make My Brown Eyes Blue

10/31/2008 04:56:00 pm BenefitScroungingScum 13 Comments

There's a scene in Layer Cake where Gene explains meditation to Daniel Craig's character Mr X as being any repetitive activity which demands concentration from the front of the brain to free the rest of the mind, in his case stripping down a weapon blindfold. I've no idea whether that is an accurate description, either of assembling a weapon or true meditation but it's certainly how I feel about death walking.

Today, bundled up in so many layers I was impersonating the Michelin man I was thinking about the nature of truth and lies. For me, going without a correct diagnosis of Ehlers Danlos Syndrome for so long has been the cause of far more damage than the condition itself could ever cause. It's impossible to explain how it really feels to be told so often that everything you say about yourself is a lie you wonder if that's true yourself. It is like being in a trap because there simply isn't anything you can do to change people's perceptions of you, and of course just being in that position is enough to effect some quite strange behavioural issues.

The only way I have been able to explain to people a little of how it feels is this scenario.

Imagine someone asking you what colour your eyes are. It's a simple fact. You might have brown eyes, or blue or even green. Although people's perceptions differ, it's unlikely anyone will try and tell you that the primary colour you believe your eyes to be actually isn't.

So, you've told the person who asked you that you have brown eyes, when to your great surprise that person tells you you are wrong. Your don't have brown eyes. They go further and tell you you are lying. You've made it all up to get their attention. You don't have brown eyes at all.

So you go away and look in the mirror. You see brown eyes looking back at you. The seeds of self doubt have been sown though and you wonder if perhaps your eyes aren't brown at all. Perhaps the person is playing a trick on you, perhaps you're colour blind?

Then another person tells you your eyes are not brown. Tells you not to be so ridiculous when you disagree and say they are in fact brown. Insists you must have some hidden agenda in saying your eyes are brown when they quite clearly are not.

Imagine that scenario repeated endlessly for years on end. Not just about the colour of your eyes, but every single thing you say about yourself. Confusing doesn't begin to explain how you'll feel after the people around you tell you you are wrong about yourself for years and years on end.

I thought the only thing to do was to tell the truth. Always. No matter what trouble it caused, I vowed I would always tell the truth. The more people told me I was a liar, the more important it became to me to be truthful. I held on to the hope that one day things would change and then I would be able to hold my head high and say I'd always been honest. As I became more and more disabled balanced only by the ever increasing lack of belief my family, friends and medical professionals had in me, always telling the truth became the only constant I had to cling to.

Of course when I was finally diagnosed it came back to bite me. I had clung to 'truth' as some sort of lifeline but it was the last thing anyone who'd disbelieved me wanted to hear.

The legacy of all this is that, despite now being surrounded by people who think the very idea of doubting me is ridiculous, my first instinct is always to think people don't believe me. It probably always will be. I'm terrible at 'white' lies, although I try very hard to be tactful. I know full well my concept of 'truth' is unreasonable, and particularly it is unreasonable of me to expect anyone else to have such a skewed concept of being truthful.

The positive is that I regularly have people ask my opinion as apparently I'm the only person they know who'll give a truly honest answer. Which, for now, whilst I try and let go of my psychological safety blanket will have to do.


Bog Off! The toiletless edition

10/28/2008 01:23:00 pm BenefitScroungingScum 17 Comments

I'm too depressed by the shiny new welfare reformssame old shite that won't work the government keep announcing to spend any more time than I have previously done on the subject.

So instead I bring you....more toilet photos!

Yes indeed, BSS being the foremost site on the internet for photographs of the good (I live in hope!), the bad, and the ugly of the world of accessible and not so accessible loos! This time I bring you....the completely and utterly stupid.

Oh, and it's not a toilet. It is completely and utterly stupid though

Thank you to mysterious G for the photo-and if anyone else would like to contribute send photos to benefitscroungingscum@hotmail.co.uk


Death Walk In Pictures

10/23/2008 04:13:00 pm BenefitScroungingScum 13 Comments

Boots at the ready....

How could I not be happy when I have all this within 200 meters of my home? The hidden gifts of having to move at snail speed.