Bog Off-Exhibit 24, Come 'Home'

5/27/2010 04:37:00 pm BenefitScroungingScum 1 Comments

I recently went to a tweet up with another Wirral based tweeter. They picked the location, I'd asked to meet somewhere accessible with parking directly outside. On that basis 'Home' at the Woodside Ferry Terminal was chosen. 

The parking was great, the disabled bays were literally directly outside the entrance to the cafe. The only downside was the high cost of parking there, no exemptions for blue badge holders, even those who also have road tax exemption. It must be a known issue as when I was back in the car ready to leave I was accostedapproached by a couple of drunkcharming looking gentlemen asking if they could have my car park ticket. I had to disappoint them by explaining they could, but it had run out some 20 minutes before I'd made it back to my car. 

I'm not sure who owns and maintains this particular Bog Off as it is next to Home cafe but seems to be part of the main Woodside Ferry terminal rather than specific to a business or attraction based within it. It is one of the more unusual examples of a Bog Off I've seen...but then, I don't get out that much!

The Bog Off must have been converted from an existing toilet facility as the wall tiles were old, probably the originals. This actually made a really nice change to the usual 'built to the absolute minimum legal requirements and not even those if we can get away with it' disabled toilets featured in Bog Off. It gives the disabled toilet a different atmosphere...yes, I's a toilet. But bear with me on this, as anyone who's visited the famous, but smelly mens toilets in the Philharmonic Pub can attest, stunning design does really make for a different toilet experience. You'll be glad to hear this Bog Off was nice and clean without a whiff to be sniffed! It's not that the design of this Bog Off was stunning, but it was unusual and the nicer for it. The contrasting tile colours work well but may be problematic for those with visual impairments. Also unusually the lighting in this Bog Off was easy on the eye, unlike the usual overly bright white light which can be dazzling. I'm not sure if this was another reflection of the age of the toilet or particularly good design but the former seems more likely. 

The toilet was much roomier than built to minimum regulations modern disabled toilets, so there was plenty of room for the baby changing facilities in there. The space had been used less well from an accessibility viewpoint, as you can see from the photos it was rather cramped around the toilet and both sanitary disposal and the normal bin were placed in the way of anyone needing to transfer from a wheelchair, also obstructing the rails.

The sink was a small one, placed just about close enough to reach from the toilet...but not for someone my height and size. There is a mirror, but far too high up for a wheelchair user or averagely small adult. It was perfect for tall parents to look at themselves in whilst nappy changing though! 

As is typical the assistance cord was tied up out of the way. Less typically the cord was tied in such a way it could be reached from the floor, but you'd have to be fairly small and bendy to be able to fall anywhere you could reach it in the first place as it's tucked in between the toilet and bin behind the loo brush. 




Falling off my soap box

5/25/2010 04:03:00 pm BenefitScroungingScum 7 Comments

As anyone who follows my prolific but nonsensical tweetings already knows....I got my mattress yesterday! It's official, I'm in love with Tempur. BendyCat seemed keen too, she being a tad arthritic of the hip, but then bed is her favourite place anyway. I think she's still there now. 

But, Tempur. Omigod. Tempur. "How shall I compare thee to a summer's day. Thou art more lovely and more temperate"* Did I mention I love Tempur yet? Except for one thing, Tempur, your website is terrible. Get that sorted and a twitter account set up immediately. It's no fun tweeting endlessly about my love for you when you're not there to benefit from it.  I'm boring myself back into bed droning about Tempur so I'll shut up. After this next declaration of love at the least. I tried other memory foams, oh how I tried, Tempur being about a zillion times more expensive than the other memory foam mattresses and toppers available. There's a reason for Tempur's high price, and it's that it doesn't feel like other memory foams. With most memory foam products they mould quite nicely to your body in a soft kind of way, but they aren't particularly supportive. Tempur somehow manages to combine soft moulding with a secret wizardry which means your body is well supported in it's moulded place. Even someone like me who could out sleep wriggle any sleeping toddler. I'd heard that Tempur products can be a bit hot and sweaty, which may be a good state to achieve in bed, but is less desirable when it's your bed doing it to you. Or maybe not, I s'pose it's all a matter of perspective. I wasn't too concerned about the hot, sweaty thing as I tend towards the ice cube end of the female spectrum. Confirmed by last night needing a hot water bottle to add to the warmth of a 15 tog duvet and a purry BendyCat. 

Ok, that's my Tempur love in done. I promise. They make you keep the box for the 2 month trial period but that can be chucked out as there's no way I'm ever letting this mattress out of my grubby paws. GangstaGuy pointed out there is a flaw in that logic as I have puny little sparrow hands** but you take the point. I love my Tempur. And I love you all very, very much for helping me buy it. 

Fortunately Tempur delivered my mattress well before I had to leave to go to Pain Clinic yesterday. The good news is I don't have to go back again. Woohoo! It's sort of implied in the name that it won't be the most cheerful of experiences but I seriously object to the pain of being fleeced of £2 for less than 30 minutes parking. I'd be far happier about it if the money went directly to the service I was going to use rather than being used to send endless stupid letters back and forth or employing more managers and somehow denoting them as front line workers.*** At least the nice clinic clerk went to get the parking thingummyjig from the machine for me as you can't pay either inside the building or at the exit forcing you to walk or wheel. Another stunning example of accessible design in our public sector. You'd think it might've occurred to someone somewhere that people going to a Pain Clinic might not be the sprightliest. But then that would involve actually putting some thought into these things beyond how much money can be made. Did I mention the good news is I don't have to go back again?! 

Dr Pain and I had a nice if slightly depressing chat about financial deficits, how far the new ConDem government will cut back on public services particularly the NHS and welfare and the implications of such cuts for services like the Pain Clinic. Dr Pain is a consultant of the old school, a nice man who is interested and interesting but the whole experience confirmed my feeling of the inadequacy of the current model being used for pain management. The role of medicine is important, a cornerstone of pain control and should be done by a doctor rather than a nurse, just as the exercise role should be undertaken only by qualified physiotherapists. But, they are not the people who should be delivering the management part of pain control. Physiotherapists and doctors are naturally going to think and act in a traditional medical model manner, which is all well and good for medicine but not so much use in helping people find ways to successfully live with their chronic pain conditions. Some Pain Clinics use expert patient schemes and most try to deliver some kind of pain management course but the lack of success of these is because they aren't being delivered by the very people who can understand and teach the necessary pain management skills themselves, people successfully living with chronic and painful conditions. With welfare reform being high on the list of the ConDem government's plans to savecut benefits, money will have to be spent on more innovative ways of helping those with chronic conditions into the workplace, and lack of appropriate pain management is a barrier to work for many. The future of successful pain management lies in Pain Clinics being able to directly employ such patients to deliver services to other patients. 'If life gives you lemons, then make lemonade' is a tough enough lesson to learn from someone in the same boat as yourself, but one guaranteed to patronise and push away if delivered by someone without direct experience of it. 

Whilst I'm on my soap box...the idea to scrap current job broker schemes is an excellent one, but could we do it properly and save some money by actually using the current single provider we already have. Y'know, those JobCentre things? I'm no economist, in fact my grammar school education has rendered me unable to add up further than the number of fingers and toes I possess, but I'm very, very certain that it will cost less and be more effective to put some money into Job Centres and tap into the skill of the advisors who were all doing the job of private job brokers far better until New Labour decided the whole thing should be taken away from the Job Centres and put into private companies. You may have that snippet of widsom for free Iain Duncan Smith, but please, please do me a favour and employ some actual currently unemployed people, particularly crippled and mental claimants to help you reform the system to one which will actually work and protect those in need of protection without driving us all off to Switzerland.

Dr Pain seemed sure that the withdrawal symptoms 'should have stopped' by now. He's a nice man so I didn't tell him that I've tried telling my body what it should and shouldn't be doing before now with very limited success. Ok, outright failure but limited success sounds so much more positive don't you think? What's that you say? Deluded. Yeah, maybe. I kept this stream of consciousness to myself during the appointment all the better to bore you with afterwards. Dr Pain suggested that I remain on a twice daily 10mg dose of Oxycontin as a 'holding dose'. I sort of mumbled non committally and went away fully intending to do no such thing. I haven't spent months going through this Oxycodone fuelled nightmare not to finish what I started. There is also the fact that on nothing more than sheer, gut instinct I feel Oxycontin is contributing to the problems I'm having at the moment. If at some point in the future, perhaps when the weather gets colder, I am unable to control my pain I'm happy to go back onto stronger forms of pain relief but I don't want to do that without being damn sure I haven't got another option. The Jobbing Doctor will perhaps be pleased to hear that I came away from the 'specialist' appointment with an increased confidence in my GP's ability to handle opiate withdrawal in a far superior manner than the Pain Clinic's. Now I need to somehow pass on that confidence to my lovely GP who is understandably inexperienced in the management of a complex Ehlers Danlos Syndrome and for it perhaps less sure of her own ability in this particular situation.

You'll have to excuse me now. I need to go and make love to my mattress. 

* Sorry Will, it's shit I know. I can hear you turning your, and my, future graves from here.
** I know. GangstaGuy is a man who comes up with the most creative of (un)complimentary descriptions.
*** I have no evidence for this, but I'm damn sure NHS trusts are busily involved in such activities already


Ofcom uphold complaint about 'the R word'

5/24/2010 05:53:00 pm BenefitScroungingScum 0 Comments

Ofcom have upheld complaints made about the use of the word "retard" on Channel 4's Big Brother show last year. The word was used by Vinny Jones to describe presenter Davina McCall* "walking like a retard" 

Thanks are due to disability rights campaigner Nicky Clark in her efforts to see this complaint brought to fruition. Nicky sums it up perfectly;


The next step in bendy world domination

5/24/2010 12:08:00 pm BenefitScroungingScum 10 Comments

I admit it, I'm an Eastenders girl through and through. Something about the melodramatic drudge of life in a fake East End Square really appeals to me. Possibly because my life always looks good in comparison. Corrie (Coronation Street for the overseas readers) has never been my thing, despite years of efforts by my wildly successful university mooting partner to convert me. I'm not sure what makes him so obsessed with Corrie that he records it to watch on his return from business trips but whatever it is, I'm about to find out.

It was exciting when Eastenders introduced David Proud to play Adam Best, their first full time wheelchair using actor, but nothing could beat the excitement of discovering that Coronation Street are introducing a full time female cast member who uses a wheelchair.....because she has the Hypermobility type Ehlers Danlos Syndrome! The writers have decided the most sensible option is for the character to share Cherylee's real life disability so there will be a full time bendy roaming the streets of Coronation Street.

Cherylee Houston is 35, but like most people with Ehlers Danlos Syndrome looks younger than she is. She will be playing the part of Izzy Armstrong, a love interest for Kirk Sutherland. Cherylee first appeared in Corrie some months back but I'm afraid I was too busy watching Eastenders to notice. Cherylee has the characteristic EDS facial appearance, which of course makes her a bit of a looker too.Cherylee has already appeared in other TV shows such as 'Doctors' and 'I'm with stupid'.

The only downside I can see is having to become addicted to another soap opera!

Copyright of the above image belongs to The Daily Mail



5/21/2010 05:40:00 pm BenefitScroungingScum 12 Comments

I have a spanking, only been used 3 times before, new mobility scooter! For the bargain price of £150. I am a very happy BendyGirl! 

Especially new Tempur mattress arrives on Monday. I don't have to pay the VAT so the mattress and scooter come to the price I had thought the mattress alone would be.

To make it even better, the scooter was donated to a local charity shop by a lady who volunteers there. They aren't allowed to accept electrical items so weren't sure what to do with it. My neighbour also volunteers there and got them to keep it for me. The lady who donated the scooter is happy it's going to me, and the money for it is all going towards the day care center for people with dementia. It's all grand. 

The only downside is I've had to leave the scooter at the charity shop for now while I get quotes from builders to sort out ramps etc. Unfortunately where my flat is means there's no easy way to do it, but all the money that was being saved for the scooter can be put towards building costs. Expect happy scooter photos when that happens. 

Thank you so, so much to everyone who helped me fund raise towards these items. I've been saving for ages but without your help I wouldn't have been able to buy the scooter and mattress for another few months at the least. Even if the building work takes a while I'll have the scooter in time for summer. 



Bog Off-Lingerie Leads The Way

5/19/2010 12:10:00 pm BenefitScroungingScum 4 Comments

This edition of Bog Off was snapped in a lingerie shop at the Cheshire Oaks outlet shopping mall. Unfortunately I am scatty and prone to breaking inanimate objects so I've somehow broken my second swanky Samsung Tocco Ultra phone which would have allowed me to easily write a note telling me what the company with this leading example of accessibility were called. But instead I broke the phone and forgot to make a note of the company name. 

So to you, accessible heaven of discounted lingerie company I apologise. Your facilities rock.


There and back

5/16/2010 04:25:00 pm BenefitScroungingScum 13 Comments

I made it to and from Leeds in one intact, if slightly battered piece. As expected my left shoulder and hip popped out before I was even in the car, but my injured right knee held up better than I had hoped. 

The drive to Leeds was in the early afternoon which meant very little traffic and I arrived in plenty of time to chill out with a cuppa before going through to the outpatient department. Chapel Allerton is a lovely hospital surrounded by greenery which gives it a peaceful and friendly feeling despite it's proximity to the bustling city centre. 

Once I was settled in the general rheumatology outpatient waiting room I amused myself by playing 'spot the bendy'. It's a fun game that all the family can play...just look out for the various forms of contortionist seating positions, constant wriggling, hyperextended joints wrapped round chair legs and a certain 'only bendy people have it' peach like quality to the skin. If you can't spot any of those features in a crowded room use the almond shaped eyes as a clue to introduce you to the others. I'm not sure if it's that we stand out in any crowd, that the nursing staff at Chapel Allerton are outstanding, or a combination of the two, but I was incredibly impressed by the nurse* who remembered me from last time I was there in January 2009 and came over to chat. Though, that could just have been a cunning excuse to spend work time watching children's TV with me.

Professor Bird's clinic was running uncharacteristically late. Waiting reminded me of clinic waits back in the late 1990's, before the then new New Labour government's funding increases had started to take effect. Then, after years of underfunding by the Thatcher/Major Conservative government, it was standard to wait at least 3 hours before seeing a doctor, and on many occasions clinics were so oversubscribed that patients would be sent away without having been seen, despite medical staff working many extra unpaid hours trying to fit everyone in. An hour or so after my booked appointment time a nurse came out to ask those waiting to see Professor Bird if they would like to be seen by another doctor, but all those waiting preferred to wait as long as it took, knowing full well that in anticipation of his retirement the Prof was giving each patient as much time as they needed rather than sticking to rigid appointment slots. This is the fundamental flaw in Chapel Allerton's long term plan to provide a specialist hypermobility service without a dedicated consultant with a special interest in hypermobility to lead it. Patients travel to benefit from that person's specialist knowledge, and PCT's pay an additional premium to fund it. Perhaps if Chapel Allerton took better care of their finances they would realise that there are significant funds generated from 'out of area' referrals to be collected from the Primary Care Trusts which would mean a hypermobility service generated revenue for the hospital. Without one consultant in overall charge of the service, news will spread like wildfire throughout the patient community that Chapel Allerton are no longer providing such a specialist service and patients will seek that expertise elsewhere thus impacting adversely upon the finances of Chapel Allerton and overall the Leeds Teaching Hospitals.

As is typical of any 'bendy clinic' I've been to, before long one bendy person finds another, a conversation starts and more join in. I was happy to see that I'd correctly identified the right people playing 'spot the bendy' but saddened to hear how poorly informed others were about their hypermobility, especially as these were people at the less affected end of the hypermobile spectrum, who, with the correct information and life management advice should be able to live full, active lives but who were drowning and disabled more by that lack of support than their physical conditions. This is the kind of information and support clinicians are not really in a position to provide as paucity of time and resources mean they have to have a narrow, medical model focus. The gap is not currently being covered effectively by other specialties such as Pain Management, Occupational Therapy or Physiotherapy although they tend to have a little more time to attempt such advice. It's typical of the way services are funded in the UK, the NHS being separate from social care, which is again separate from welfare benefit entitlement, which is again separate from support or equipment provision. The end result is that patients fall through gaps in the system and the cost to individual lives and the welfare state is phenomenal compared to the cost of filling the gaps in the system by funding such support.

I had been feeling incredibly positive since starting this new type of physiotherapy, but my appointment left me feeling rather depressed. I'm so used to multiple dislocations and all the other fun which goes along with being a severely hypermobile person with a mosaic Ehlers Danlos Syndrome that I tend not to take much notice of it in my non blogging day to day life. It just is what it is until someone points out that actually, maybe it isn't. I'd prepared a list of all the current issues to be dealt with, which I wanted to have correctly documented prior to Professor Bird's retirement, partly because of the loss of his expertise and partly as I am anticipating the inevitable request for further information from the DWP when I come to do my Disability Living Allowance renewal forms over the next few months.  

The list was extensive and covered issues such as the long term Oxycodone withdrawal I've been doing, my lack of co-ordination, problems with proprioception and ataxia, the problems with shortness of breath, larynx dislocations and occasional airway collapses, the state of my joints and concerns about the effect of increasing spinal instability on my spinal cord, bladder and bowel functions. Professor Bird wanted to see how long my joints were staying put once I'd relocated them which was demonstrated very effectively by my left shoulder which I had reduced at the start of that discussion and which had dislocated again before the end. I also reduced dislocations in both elbows, the other shoulder, had an attempt at reducing dislocations to both hips and reset my ribs and spine several times whilst we were talking. The main concern is obviously my spine as the instability there has far more destructive potential than anywhere else. The x-rays of my hips and spine done last year are showing some type of congenital deformity to my lower spine, but an MRI is required to see exactly what, and whether there is anything more than very occasional impingement occurring anywhere in the spine. 

As there is limited time before Professor Bird's retirement he wants me to be admitted to Chapel Allerton for a week to have the MRI scan and to be seen by their Physiotherapists, Occupational Therapists and Social Workers.  Admission has been suggested before but the way I was treated in hospitals prior to my diagnosis of Ehlers Danlos Syndrome has left me with a phobia of staying in hospital so powerful that even the idea of it makes me panic. I've not made my final decision about what to do yet, but as I'm panicked by the idea of it I'm not sure I'll be able to cope with the reality. There is also the question of what the benefits of such an admission would be and beyond having an MRI scan I can't find any. I  already know I need to take great care of my spine, but beyond that I'm not sure I want to know. Should a scan reveal that paralysis or loss of bladder or bowel function is probable in the future then I definitely don't want to know. There are various options such as getting gynaecology involved, experimenting with oestrogen but in the years since being diagnosed most of these issues have already been explored teaching me the most important lesson of all; that a hypermobile body is best left to be a hypermobile body and that endless investigations or experiments with medication only result in more complications and disability. I feel the same way about Social Services, that any potential gain in terms of equipment or care packages are vastly outweighed by the disadvantages of having to deal with Social Services themselves, so much so that it is not an option I'd be willing to consider. The only real way for those with Ehlers Danlos Syndrome and many other chronic conditions to live a happy, fulfilled life is to be the person in control of their own treatment and management, and unfortunately hospital admission removes that control by it's very nature. There are vastly different waiting list targets for inpatient treatment than there are for outpatient treatment which often means a hospital admission is the only way to get investigations done in a timely fashion. This is yet another example of the bureaucratic web which cripples our public services, as people end up requiring costly hospital stays for investigations or procedures which only require admission to circumvent funding problems. 

That, and the fact that I'm just a bendy heap of traumatised wimp who just doesn't feel able to cope with a week away in hospital, let alone find someone to look after an aged BendyCat for a week. BendyCat had Ben to cat sit her last time I went away, but was so distressed that by the end of the week it was a close call as to who needed valium sooner, Ben or BendyCat.

*auxillary rather than RGN


David Cameron's Volunteer Army

5/12/2010 08:33:00 pm BenefitScroungingScum 8 Comments

I'm fortunate to have a wide and varied group of supportive friends but despite that I've not been able to find anyone who is able to give me a lift to Leeds for my appointment with Professor Bird tomorrow. I would rearrange but as the Prof is retiring in September this might be the last chance I get to see him before then. So, regardless of the condition of my joints I'll be driving myself there and back tomorrow afternoon. 

This is exactly the kind of situation David Cameron must have in mind when he talks about replacing state with society and exactly the kind of situation that demonstrates the problems with transferring dynamic sounding rhetoric into reality. People want to help each other, but the practicalities of modern life make that very difficult to do. I live in the kind of old fashioned small town where people tend to be involved with their neighbours, and will help in emergencies but most of the needs so euphemistically supposed to be covered by volunteers aren't emergencies but the day to day grind of life. Taking a day off from work, family, caring responsibilities, or all three has too high a financial and practical cost attached to it to make it realistic.

So yesterday I went off for a practice drive to make sure I could control the car safely with the state my joints are in. Within moments my left shoulder had dislocated, my left hip was already out before I started driving. The one advantage of having such incredibly unstable joints is that I'm used to moving and functioning, including driving with multiple dislocations. I just needed to ensure that I could continue to concentrate with the increased pain. It won't be top of my list of fun things to spend spoons on, but I'm confident I can make it there and back safely. And there's always the option of spending the whole weekend in bed if I need to. 

Wish me luck! 



Ehlers Danlos Syndrome Awareness Month

5/11/2010 04:31:00 pm BenefitScroungingScum 5 Comments

May is Ehlers Danlos Syndrome awareness month 

16 year old Damien Wilkins died on 27th September 2009. He had Vascular Ehlers Danlos Syndrome. Damien and his family were fully aware he had Vascular EDS, previously known as EDS type IV but most people with this life threatening condition go undiagnosed until after their deaths. Please take a moment to view the diagnostic criteria for Vascular EDS and the emergency advice from the EDNF.


Breaking Bad

5/10/2010 08:15:00 pm BenefitScroungingScum 7 Comments

I'm having one of those days. Well, one of those weeks is probably more like it, but I don't want to consider how far this current path of destruction goes back. So, day...week, whatever. Everything I touch breaks, falls over or stops working so I'm happy to call it quits on the time factor in case I break that too. Even BendyCat is affected, I've just managed to elbow her in the head trying to put my jumper on.

I've actually been good and remained on my arse for most of today. I have an appointment at the bendy clinic  in Leeds with Professor Bird on Thursday and I'm starting to panic about being able to get there. GangstaGuy is away that day and Roland on nights. Pretty much everyone else is either in work, education or not well enough themselves. I'd ask my pot dealer but I have this old fashioned notion that people should be sober when they drive a motor vehicle. Usually I drive myself but my joints seem set on a path of separation and are stubbornly refusing any form of couples therapy. 

Friday night was supposed to be a night of passion. It involved screaming but that was pretty much it as far as passion went. I think I dislocated my knee, probably the femur part rather than patella part but beyond something going 'pop' I couldn't say. Things go pop all day and all night so I try not to pay too much attention. Whatever the source of popping not long after I was howling. Now, those who know me know my usual reaction to a dislocation is to scream something along the lines of 'fucking fuck fuck' then go back to whatever it was I was doing. It is absolutely not typical for the screaming to continue along the path to sobbing. I'm not big on crying. It always gives me a headache. Besides, swearing is good for pain. Science says so

GangstaGuy was a bit distressed. He tried to hide it but I could tell by his frequent, hopeful suggestions we go to hospital. The pain was so bad I did consider that option myself but decided I'd rather be in pain on a comfortable couch with supplies of tea, chocolate and weed than in pain in an uncomfortable tea, chocolate and weed free hospital. After all, what was the hospital going to do that I couldn't myself? Prod it a bit, hum and haw, maybe throw in an x-ray for good measure then suggest some form of support, anti inflammatories, crutches and a rapid referral to orthopaedics. It's the knee of the hip which got so put out when I misjudged a step back in March. How can it be that long ago? What happened to April? 

So that was Friday night. I 'broke' my knee. 

On Saturday morning I broke GangstaGuy's sink. Cracked clean through. Fortunately not with my head as I have not recovered from having to explain to a bemused A&E doctor how I managed to crack the back of my head on the underside of a sink many years ago. This sink break was caused by my 'oh so careful' balancing of a candle holder. The 'oh so careful' bendy version is never quite the same as anyone else's 'oh so careful' so now GangstaGuy needs a new sink. I was mortified. Breaking other people's possessions is far less acceptable than breaking my own, though they all end in the same place-people who aren't me fixing them. 


Lies, Damned Lies and Semantics

5/07/2010 12:21:00 pm BenefitScroungingScum 8 Comments

A guest post from Elena Newley. You can follow Elena on twitter as @autismwales or read her blog Planet Mouret Films

Lies, Damned Lies and Semantics....

So, ok, here we are. We've had the election and now we appear to have no government at all! I don't know about anyone else but I am already getting confused between the notions of 'pacts' and 'understandings'. It would seem they are very different.

I've just watched Nick Clegg giving an extremely cleverly worded statement. As a student of semantics, I listened very hard to all the words and tried not to focus too much on the overall meaning! Unpicking that statement in a linguistic way, seems to indicate to me that he's playing a very clever, if somewhat risky, game. But I can very well understand why he is doing that...

The Press are already running with “Clegg offers first refusal to Cameron” straplines, followed by the type of sub-editing lines we've become used to in this Murdoch-infested day and age, of “Gordon is pushed out of the picture”. I suspect we're all so tired now having stayed up all night imagining we might find out who had actually won, that many of us may be at the point of taking these announcements at face value. If so, could I please sound a rather loud note of caution?

The press seem to unilaterally believe that Clegg stated, during the election campaign, that he would be willing to form a government with whichever Party won the most seats, based on some sort of 'principal of fairness'. However, I would very strongly argue that he has never, at any point, actually said that. What Clegg actually said was that he thought the Party with the most seats should “try” to form some sort of government. That's very different to saying the Tories should run the country or that he really believes that they have any public mandate to do so.

And now, this morning, Clegg has produced an equally triangulated statement in which he appears to be starting the dating process with the Tories. His statement sounded a little like he was up for a chaperoned meeting with David Cameron with a view to a possible engagement if his parents agreed!

However, if you unpack his statement, what he actually appears to be saying is that he is going to stand by his pre-election promise (you know, the one he never actually made!) that he felt the Party with the most seats had the right to get first go at forming a government and that the Liberal Democrats would listen to anything Cameron had to say so long as … and here comes the zinger... the Conservatives sought to form a Government which was in the national interest. Oh, how I love words...

Still with me? Good!

So, clever old Clegg has said everything and nothing all in one statement. Hmm, perhaps he's not offering as much of a 'change' as we were led to believe!

The point being, for those of you who haven't lost the will to live and are still reading this, he's really saying that yes, David Cameron is welcome to begin courting him but ONLY on the understanding there's no kissing on the first date! Well, ok, that's not exactly what he's saying but you take my point? The real point in Clegg's statement was that he wants to be seen to be playing the game, abiding by the country's wishes (and if he knows what the country's wishes ARE, he's one step ahead of me that's for sure!) in as much as he's willing to listen to Cameron if, and very probably only if, Cameron will agree to his previous four demands which, if my memory serves me correctly, centered on electoral reform, budget reform, environmental issues and something else which escapes me at the moment!

Ok, so here we go, Clegg could concievably work with Cameron if perhaps Cameron agreed to have a public referendum on the idea of electoral reform (for “electoral reform” read proportional representation!) but I just can't see how the Tories could agree to this. If they DID agree, then they would really have no option but to abide by the outcome of any referendum and, I don't know what all of you think, but my own feeling is that if we can't even elect a Government, then it's doubtful we're going to come up with the 'right' answer on electoral reform. When I say 'the right answer' – of course, I mean the 'right' answer by David Cameron's standards, not by ours! We are all going to have to learn that what WE want really doesn't come into any of it too much!

And, be warned, referendums have a nasty habit of coming back and biting us on the metaphorical rears! Referendums have a fairly impressive past history of having to be repeated endlessly until the public (and that's 'us'!) finally give the 'right' answer, viz a vis the Irish Republic and the various referendum's on the Lisbon Treaty (which went from a resounding 'No' vote in the beginning, to a somewhat exhausted 'Yes' vote before it was accepted by the Taoiseach as being the 'right answer'!)

If you're lost in this Westminister-led miasmic triangulation – join the club!

But just remember... never, never, never, take statements at face value. Yes, Clegg may very well want to appear to be 'doing the right thing' but, before we let ourselves get too carried away or adoring of the marvellous Nick, maybe we should all ask ourselves what 'the right thing' actually is?

What do YOU want? A minority Tory or Labour government who rule only with Liberal Democrat abstentions? A coalition government of the type of the last Lib-Lab pact whereby the Lib Dem's and the Tories or Labour actully FORM a government and actively SUPPORT each other? They are very definitely two very different things. One is a form of parliamentary active consent and the other is a kind of parliament two-tin-cans-and-pieces-of-string, Heath-Robinson type of affair which really only has one inevitable outcome; another General Election within the next few months.

The problem is, I cannot, for the life of me, see how Clegg COULD govern actively with the Tories on many of the major issues, the budget reforms being one of the most obvious areas of disagreement. Could Clegg agree that the Lib Dem's would simply abstain and thereby allow Tory policy through Parliament? He could but only if he gains some fairly major concessions from Cameron, electoral reform being the most obvious thing there. Personally, I just can't see Cameron being able to persuade his own Party of that, let alone anyone else. And it's salient to note that Clegg was seemingly very clear whenever he talked about his demand for electoral reform prior to the election, I didn't hear any 'let's try' in those statements, they were categorical and definite, he would demand electoral reform if there was a hung parliament before he would agree to work with any Party.

So, there you have it, or quite possibly you don't!

So just be warned, we are all now in for an absolute bombardment of rolling news programmes featuring 'experts' on British consitutional law and tired-looking politicians arguing their respective corners, BUT if you manage to stay awake long enough to actually listen to anything any of them say …. just remember … it's not WHAT they say, it's HOW they SAY it that matters.

Look at the words, look at the words, look at the words ….

Thanks Elena!


Happy Meals

5/05/2010 07:26:00 pm BenefitScroungingScum 15 Comments

For some reason all my hospital appointments appear like a rash across the same part of the calendar every year, so yesterday saw me head off to Freak Clinic and later to my GP. I can't quite work out where the year since last appointment has gone, but fortunately this time the parking situation was slightly better and I didn't need to accost any builders to help me up stairs. Probably why my blood pressure was considerably more healthy this time. 

As I'd seen the consultant last year I saw the registrar this time. As Ehlers Danlos Syndrome is a rare condition I believe those of us with it have a responsibility to allow medical professionals to learn from us. It may not always be what is in our best interests as individuals but it is in our overall best interests. Although it is too late to rectify the physical and psychological damage done to those of us only diagnosed very late in life, it's not too late to stop that happening to more young people. The registrar was lovely and spoke English to a far higher standard than many of our native speakers, but he also shared the kind of indecipherable accent common to many of our native speakers so I found it rather difficult to understand him. The harder my body is having to work to get me around the harder I find it to take in information, my brain is too busy concentrating on sit up, move forwards, stay upright, breathe dammit, breathe, to focus on anything more complex. The first thing to go tends to be my ability to comprehend so add in a strong accent and all bets are off. I'm not sure if the overly energetic concentration skills are the reason I've developed another ptosis but the registrar was the second person to point it out, and the second to notice I can't tell my right from left. Perhaps that's why I had to donate another armful of blood, but that thyroid function test several people suggested a few months ago is finally being done. I'm sure this is all just part of the relapsing remitting part of EDS though. 

Part consolation prize for having reached the weight of 50kgs, heavier than I've ever been, and part only thing I could think of to stop the fatigued muscle shaking I went to McDonalds on the way home. The real prize was the toy lightsaber I got in my Happy Meal. All kinds of awesome. Who says women aren't easily pleased? Well, this one anyway. 

Then it was home for a few hours before heading off to see lovely GP. I know. You're so jealous of the excitement of my life you just can't contain your envy. I get that way myself. If it helps I became near homicidal when one of my neighbours woke me from a much needed nap about 30 seconds after I'd fallen asleep which meant that was the end of that. I could've cried. 

Usually I'm a bit more emotionally robust* but withdrawal is really dragging me down at the moment. I spend lots of time fantasising about possible ways of getting inside my skin to scratch the terrible Oxycontin induced pain in the fascia. At least I think it's Oxycontin's quite different from the kind of pain produced by multiple spinal and rib subluxations which for some reason I'm having as soon as I reduce the last set at the moment. Really envious now aren't you! 

The consulting rooms at the new GP practice are upstairs, accessed by a flight of stairs for most and a supposedly DDA compliant lift for others. As I went towards the lift one of the other patients asked why I was using it as I looked so fit. I think she thought I didn't know where the stairs were as she was mortified when she realised I wasn't able to use the stairs. It always amuses me how instinctively people equate slim with fit. Lovely GP is fortunately more switched on about my abilities as she came out of her consulting room to find me, knowing full well the delay meant I would be stuck in the lift. I was...sort of halfway up from the waiting room, feeling a right muppet as everyone on the ground floor looked at my legs through the glass door and lovely GP tried to figure out the problem from the first floor. The problem was that my fingers just aren't strong enough to keep the lift button fully depressed and it must have some safety shut off feature if the button is pressed intermittently. Really annoyingly it's impossible to press the button with the side or heel of your hand as there's a 'safety' rail in the way so I confidently predict more 'stuck in the lift' moments in my future. 

I needed to get some 5mg tablets of Oxynorm prescribed ready to take the next step down in the withdrawal process and some Co-codamol, a put on prescription as it's expensive to buy on a frequent basis and only the lowest dosage of codeine is available over the counter. We had a bit of a chat about whether there are any medications which can help ameliorate the side effects of withdrawal but other than diazepam there aren't. Lovely GP is quite happy for me to use diazepam for a couple of days each time I drop the dosage but agrees it's less than ideal considering it makes me even more floppy and carries such a potential for dependancy itself. Fortunately a fellow blogger explained to me how to make tea from cannabis leaves, which is excellent both for improving circulation and sleep. It's also a more socially acceptable way of consuming cannabis than smoking a pipe in the middle of the day, and happily cheap as most people consider the leaves of the plant useless. The only downside is that you need to find someone who is growing their own plants, but if as I have, you can do that then they'll be only too happy to donate the leaves as they aren't a part of the plant which can be smoked.  That, and be prepared to fall asleep for several hours, which with any luck is what I'll be doing before too long...

*I did only say a bit.


Bog Off! Exhibit 23-Your M&S

5/04/2010 05:40:00 pm BenefitScroungingScum 5 Comments

Sent in by BSS reader and Bog Off fan* Nemonie this Bog Off features the accessible loo in Marks & Spencer at Teeside retail park, near Middlesborough. As you can see they have tied up the help cord ever so helpfully out of the way. They have also placed a chair in the way at the side of the loo, again presumably out of a misguided sense of helpfulness. 

M&S pride themselves on their customer service so come on Marks and Sparks, we expect you to lead the way in excellent facilities not lag behind. 

*My very own exciting!


What's the point in making vows you're never going to keep?*

5/02/2010 05:22:00 pm BenefitScroungingScum 9 Comments

Yesterday was the 4th annual Blogging Against Disablism Day, hosted by it's creator The Goldfish. In typical fashion I am a day late. I am claiming the extra day as a 'reasonable adjustment' under the Disability Discrimination Act. I'm confident of success as it's a dual claim on behalf of myself and the hamster which lives in my computer and makes it work. The hamster was buckling under the strain of a clogged hard drive and refusing to be evicted virus, so felt life was no longer worth living and booked it's flight to Switzerland. After some serious surgery and time in intensive care the hamster is still poorly but feels life is now worth living and has given me it's permission to apply for a care package and cancel the Dignitas trip. 

When I've not been busy persuading the computer hamster that suicide is actually painful, I've also been wondering what I wanted to say about disablism; other than it's a rather cool internet invented word. It is though isn't it? What's less cool is that a bunch of cripples on the internet had to come up with our own word for the discrimination faced by disabled people every day because disablism is so far off the radar for most people that it didn't even have a proper 'politically correct' name. No wonder disablism is still struggling to take it's proper place amongst the other discriminisms. And yes, I did just make that word up too. I'm on a roll here. Well, I would be if the provision of wheelchairs on the NHS wasn't in and of itself disablist, but as it is you'll just have to imagine the rolling bit.

Being disabled is hard, not so much down to the obvious reasons such as physical limitations or mental health struggles; though they should be challenging enough, the invisible reasons are the really tough parts. It's one thing to have a poorly leg but quite another to be told by the world that that poorly leg makes you a lesser person, a person who can't go the same places as other people, not because you have a poorly leg but because those places don't see why they should enable poorly legged people to access them. There is a certain look which crosses the faces of the able  when the differently able speak of the way the world treats them. A look which says you are over reacting, over sensitive, it's not as bad as you say, and after all, you are worth less than  the able so you should satisfy yourself with what you have and be grateful for the concessions the able make for you. 

And you know what? They're right, it's not as bad as we say. Actually, it's far, far worse. Just ask the wheelchair user refused access to a flight because he couldn't climb the stairs, even after he offered to use his arms to climb them; the mother who felt her only option in life was to end life for herself and her daughter, that death was the only way she could ensure the safety of her child; the man kept as a slave and tortured for his disability benefits; or the former marine** blown up in the service of his country then told his prosthetic leg would give him an unfair advantage.

*With apologies to Frank Turner for the blatant title song lyric theft
** Discussion about accusations of 'advantage' start at 02mins12seconds