Tuesday, April 27, 2010

Bendy Beauty

Y'know, there is an actual proper reason for all those warnings to not download dodgyness from the internet. Not that I believe photos of people who happen to be naked are dodgy or anything, I'm no hypocrite. Which is how I've ended up with a virus on my laptop, an experienced downloader of dodgy photos would never have been so daft! 

It started yesterday. Blame twitter. It gets blamed for all sorts, so why not the virus on my laptop? A friend tweeted me to alert me to a conversation on Ian Collins late night talk radio show which had featured a guest with problematic hypermobile joints. Now, I'd never heard of TalkSport, let alone Ian Collins or his guest Peta Todd so I was eager to find out more. Unfortunately there's no listen again feature on TalkSport so my friend explained that the glamour model Peta Todd had been talking about the problems her hypermobility has been causing her of late, most recently she dislocated her hip running the marathon. I was intrigued and went searching for photos of Peta Todd to see for myself how bendy she is. 

Which explains how I managed to download a virus. A proper pain in the arse, still haven't got rid properly after 24 hours, and many scans with AVG, Spybot, Ad-aware and most recently Avast kind of virus. If, as it kept informing me, it was logging my keystrokes, then dear virus, go fuck yourself. Meant only in the politest of ways of course. I am a lady. Just one who's a bit inexperienced in searching for nekkid photos of other ladies. Oh, and while I'm at it, I've got no money. Don't bother nicking my identity....though, if you do, you can take the being spazzed up part as well. Hey, it's not just politicians who can be harsh on us benefit scroungers. I can too. No spazzness no benefits. That'd really make you rue the day you decided to steal someone's identity. 

Anyway, back to Peta Todd. She's seriously gorgeous, but then you'd expect that for a bendy woman, we are after all conspiring to breed a new bendy super race. She's also intelligent, well informed and very involved with Help for Heroes; in fact she's enough to send a straight woman sapphic.  She's gone straight to the top of my Beautiful Bendys list, even with the virus. Just look at her and tell me you wouldn't forgive her that yourself? It's ok, I made sure not to link to the virus photo. I'm considerate like that. 

My joints must've come out in sympathy with Peta's because in addition to virus fighting I've been fighting my lack of proprioception all day. I was congratulating myself on doing really, really well for managing to open a jar of coffee when I somehow managed to throw half of that coffee all over the kitchen floor. Where it joined the water and sugar I'd already spilled there in a sticky mess. I know better than to attempt floor washing in such a state so settled for sweeping up the mess. Twice. I dropped the first effort all over the floor. 

I'm fairly sure it's not the coffee attracting in the local cat population. I blame twitter for that too. All those tweeters raving about how good Culpepper catnip was meant I treated BendyCat to one of their catnip mice. Twitter was as usual right. Cats l o v e those toys. Every single bloody cat in the neighbourhood loves that mouse. Except for BendyCat. She won't go near it now an endless stream of drug seeking kittehs have waltzed through her catflap and indulged themselves in a narcotic drooling frenzy. To add insult to injury, BendyCat is old and cripped up cat style so she can't even chase the nipnicking moggies away.

 

Friday, April 23, 2010

New Labour: Taking disability benefits with one hand and the piss with the other

Taking disability benefits with one hand and the piss with the other.

The image has now been removed from the front page of the Labour website, but not before we managed to get screen grabs* When this image appeared last night many tweets were sent expressing dismay to prominent Labour tweeters such as Labour List, the Downing Street twitter account and John Prescott. Obviously enough to make the Labour party realise the image of William Hague as a disabled faker wasn't their finest hour. Particularly after their recent attacks on vital disability benefits

The image may have been removed, but it certainly hasn't been replaced with an apology. 



*Thanks very much to @louisebolotin, @Marjorie73 and @therealsim_o for their technical expertise

Wednesday, April 21, 2010

Zip, zilch, zero

Despite spending the past three years railing at the inadequacies of the welfare state, now that we're in the run up to an election when it really matters I got nothing. Zip. Zilch. Zero. Just a big blank of swirling brain fog everytime I see a politician rambling on about welfare reform. Admittedly it's a less destructive cloud than the volcanic one, but only on a global scale. Inside my brain all flights are still grounded. 

I blame the Oxycontin withdrawal for this particularly virulent bout, but the brain fogged state is recognisable to anyone with disabilities or chronic illness.  Actually, sod that, as that is reasonable and Oxycontin withdrawal is not. I blame it for everything. Even the volcano. That's just because the withdrawal process is a bit like a volcano. All spurting fury mixed with teasing glimpses of blue sky. 

Fair enough, I expected the pooping and puking, the sweats and the shivers; I've seen Trainspotting. I even thought there might be some mood swings. I'm a girl, years of practice with hormones have prepared me for that. I expected it would be painful, but then I'm used to that. What I did not under any circumstances expect is that it would fuck with my sex drive so effectively. 


I'm sure there's a shiny scientific reason as to why opiate withdrawal affects sexual desire and function but sexual frustration means I'm too grumpy to google it. I saw the odd mention of it when I was searching for information about Oxycontin withdrawal, but as 99.9% of searches for information about opiate withdrawal are about addiction, usually helpfully provided by private clinics offering rehab services, it was hard to find any really useful information about the physical and psychological effects of withdrawal. 

So this is the bit you really need to know. Oxycontin withdrawal is an evil orgasm thief. Yes, that's right, withdrawal steals your orgasms. But just to fuck you up good and proper it whacks up your sex drive. Who knew there'd be such wonderful fringe benefits to crippledom.


It seems to start with a period of frantic, desperate wanking as the only way to deal with the ridiculous sex drive which arrives to taunt you a small dosage drop into the withdrawal process. The wanking is specific as trust me, no-one wants to shag a pooping puking mess, which is what you'll be at that stage of the process. Fortunately at that point you will see an happy ending  to all that wanking. Be sure to be damn grateful as later on all you'll get are sore fingers and numb bits. 


After the frantic wanking stage expect your sex drive to become dormant for a period of time, probably dependent on how quickly you're withdrawing. The other effects won't be that kind and will continue to plague you like the demonic little bastards they really are. Then, just when you think it couldn't get any worse your sex drive reappears with a vengeance, but no matter what you try orgasms are off the menu. 

I'm now down to 10mg of Oxycontin tds, from a starting point of 40mg tds. When I tried to withdraw rapidly I had to stop at this point. This time round I'm not stopping but it is noticeably more difficult than the previous few dosage reductions have been. I'm still eating gluten as I discovered it's a wonderful method of counteracting the poop/puke cycle, and in the absence of orgasms a girl needs all the donuts she can get.

Friday, April 16, 2010

Bog Off-Exhibit 22-Should've known better

My GP never did get around to contacting me to ask me to review the accessible facilities at the new practice, Sandstone Medical Centre. It's a bit of a shame as the practice is a brand new conversion in an older building and should have been a shiny example of accessibility bling. Instead it is, and no offence to my lovely GP's, a great example of how to spend lots of money on making a building comply to the legal regulations without actually providing proper, working access. 

The accessible toilet is the only toilet for patients and possibly staff too on the ground floor. It's situated next to the lift and very close to the patient waiting area which could potentially be a problem if the waiting room is busy and particularly if anyone requires assistance in the toilet. The toilet has been built to what appear to be the minimum size requirements and opens directly onto the waiting room. This means that it would be almost impossible for a carer to remain in the toilet with the person requiring assistance and should someone pull the cord for assistance they would be exposed in a most undignified manner to the whole waiting room as there is no privacy curtain and no space to easily place one. A privacy curtain is rarely present in accessible toilets which baffles me as it's one of the cheapest and easiest adjustments to make. In addition to the lack of privacy curtain, the width of the door looks very tight for a wheelchair user; fine if one is petite and using a child's size wheelchair like myself but not fine for anyone using a normal or bariatric sized wheelchair. That shouldn't be surprising as the door to the adjacent nurse's room has been hung the wrong way round meaning it is completely impossible to access for anyone using a wheelchair or pushing a pram.*

 The tiles are white and it is very bright inside the loo. A small space with strip lights and white tiles is potentially dazzling and could cause difficulty for anyone with visual problems, migraines or just a typical toddler to control. The big problem though is that the grab rails are stainless steel against white which just reflects the light and makes them very difficult to see properly. The help cord is correctly hanging down to floor level but unfortunately sited in the far corner of the loo, behind the toilet meaning anyone on the floor would need my kind of contortionist skills to reach it. I'm going to confidently predict that most of the patients using the toilet will not be able to bend like a pretzel and therefore be floor bound until someone notices their absence or wants to use the toilet. Mind you, it's so dinky in there you'd need to have the pretzel bending gene to even lie on the floor!


And finally...there's not even a mirror for my lipgloss! 

*This may have been corrected since I took these photos

Bendy Begging

For all those who suggested a paypal donation button I have taken your advice and the facility to donate to my mattress/ramps/scooter/etc fund is now available in my sidebar. 

Huge advance thank you to anyone who donates. 

Tuesday, April 13, 2010

Taking the care out of community

So I finally got round to phoning up the local authority's welfare rights department about being turned down for a community care grant.

I wish I'd not bothered wasting my time on the phone call, let alone applying for the community care grant in the first place.

It seems that the local welfare rights department won't assist with social fund decisions because they disagree that there is no right of appeal, only review for social fund applications. Whilst I agree that the no right of appeal is fundamentally wrong I think that welfare rights should be dealing with any welfare problem not just the one's they think they should. Particularly because this welfare rights department are part of the local authority.

The welfare rights 'expert' I spoke to advised me that none of the items I applied for on my community care grant will be covered by a community care grant. This is because the items I applied for are primarily medical and as such should legally be supplied by other state funded agencies. There is a chance I may get some funding for a mattress but no chance of getting funding for the specialist tempur mattress. The community care grant may provide funds for an averagely priced mattress as that is an essential item but the tempur mattress is needed for primarily medical reasons, ie to reduce my night time dislocating so that cost should apparently be funded from elsewhere. It seems community care grants will be refused for any item considered to be for 'medical' needs.

On my community care grant application I asked for help with the costs of a tempur mattress, a mobility scooter, ramps for access with the scooter, a storage shed for the scooter and specialist shower chair. I didn't expect to be funded for all of the items but I had hoped for some of the cost to be contributed by the social fund.

The mobility scooter is supposed to be funded out of the Disability Living Allowance High Rate Mobility Allowance, but like many disabled people I have found it more cost effective to use that money for living on. I simply can't afford to hand over approximately £170 a month for a vehicle. I'm very, very fortunate to have someone who wants to buy me a mobility scooter so avoiding that issue but I need to meet the cost of storage shed and ramps to be able to get that scooter in the first place. I could, as some have suggested, apply for an electric wheelchair instead but the rules on wheelchair provision via the NHS in my local authority state that I'd have to use that wheelchair indoors for a minimum of six months before I'd be eligible to even be considered for an outdoor chair. I live in a tiny one bedroom flat with no room for a power wheelchair, would need more ramps installed to use it and probably couldn't get a power chair through any of the inner doors even if I was willing to use a powerchair indoors and lose all the benefits of staying on my feet in my own home. Welfare rights would not assist with this problem as they are funded by the same local authority as the wheelchair service.

The only advice welfare rights gave to me was to approach social services to be reassessed for the ramps as they are responsible for adaptations to housing. Frankly I'd rather die. It sounds terribly dramatic but I've spent years getting over the damage caused to my life by incompetent and inappropriate assessments from social services and the potential benefit of getting some funding for ramps is simply not worth the problems social services are guaranteed to cause.

So, it's back to square one. My advice-don't become disabled in the UK, the bureaucracy will kill you long before any disability could. I don't suppose anyone wants to buy me a proper tempur mattress ?


Guess the diagnosis

in the New England Journal of Medicine.

via Madison Rose.


Monday, April 12, 2010

Death.Walking

When I'm deathwalking and it really hurts, really really hurts, my mind is so clear ideas swirl and coalesce in perfection. Back home without such pain I lose them. I'd put something witty but I forgot that too, though it was definitely there waiting to be typed when the pain was most.

I never did go for that hip x-ray. After waiting a few days resting it seemed pointless, like most of the injuries Ehlers Danlos Syndrome causes the damage is to the soft tissue rather than the bones and doesn't show on x-ray. Having had many x-rays and doubtless more to come in my future I like to avoid them if at all possible. This time it has been possible, although I may need to have a scan at some point.

My hip is more unstable than it was before. After discussing things with my physiotherapist, J I am fairly sure I have torn the acetabular labrum in a posterior position. Usually my hip dislocates out to the side when I weight bear, but since the kerb step fail moment it's been dislocating out to the side before swinging back and dislocating. It feels like trying to walk on a femur locked into a permanent figure of eight movement. Tricky.

Next week I'm booked in for an hour and a half of physiotherapy. I'm not even thinking about the cost, it's pointless. The appointment is so lengthy because we plan to do various assessments so that a longer term rehab program can be worked out. Then I'll go for monthly physio appointments and work at the exercises myself. Much has been learnt in the past 5 years about physiotherapy for hypermobile people and how important 'brain retraining' is for bendies. The problems with proprioception experienced by hypermobile people are thought to be because of the additional joint movement. The joint is able to extend far beyond normal range and unlikely to be able to stay in a fixed position once it's there. This means the signals sent between muscles and brain can never get a true fix on the actual position of the joint, let alone the relative positions between body and inanimate objects. In practice this means many people with Ehlers Danlos Syndrome have comedy moment accidents. I've had to go to A&E and explain that yes, I really did walk face first into a lamp post, stone cold sober and yes, I really did swim face first into a wall.

There are reasons I put myself through all this torture. Various people have wondered why I don't have a power wheelchair. There are many reasons for that too, but even if I did have a suitable wheelchair or scooter I'd still go deathwalking. Using a wheelchair full time would mean my already weakened muscles and ligaments would weaken further, faster. The end result of that would be that I might have less hip dislocations from being on my feet, but I'd have more hip dislocations whilst sitting down. Having experienced both situations I'll put myself through any amount of deathwalking to stay on my feet part time. It may be a nightmare, but it's far less of a nightmare than the alternative. I also need to consider the fact that at some point in the future I will need bilateral hip replacements. The fear of repeatedly dislocating artificial hips keeps me awake nights. A long term physiotherapy program is the best chance I have of staying physically strong enough to enjoy life.

It's just a shame that kind of specialist physiotherapy or wheelchair provision isn't available on the NHS.

Thursday, April 08, 2010

Things Can Only Get Better

First posted May 1st 2008

1997 was the first election I was eligible to vote in. As a young student I attended an election night party and cheered along with everyone else when Michael Portillo lost his seat. Oh the irony. That was the moment we all truly felt things had changed, and like the song said, could only get better. Like many, the only government I could remember was a Tory one and how they were hated. At that time, fit and active despite various health problems caused by a condition I didn't know I had, access meant nothing more to me than the ridiculously steep ramp being built outside my university building.

11 years later times have changed. Radically so. 1998 was the year in which I first had personal internet access, a present from an incredibly thoughtful friend to keep me entertained whilst recovering from the first of many surgeries. A mobile phone was still a year away, my own pc further still, consumer goods being proportionally so much more expensive than today.

Ironically, as I saw my own world shrink through increasing disability, the wider world became smaller and more accessible via developing technology. I found information, support and in time whole communities of people just like myself. The disabled community is diverse and to attempt to view us as all the same would be as ridiculous as the suggestion that all football fans are hooligans.

It is not just technology which has altered over the past 11 years. I do not remember ever hearing the term benefit scrounger when I was at university. I do remember the first time I was given that label though. A family member who was struggling to find work after university would regularly inform me that I was scum. Benefit scrounging scum. It was people like me who were preventing him from gaining employment. Don't ask me how that illogical thought process was supposed to work, but as an unemployed graduate no different to any other, this person had bought in to the belief that if one did as they were told and went to university a well paid and interesting job would fall into their lap. Obviously without having to go through the hassle of applying for one. When it became clear that wouldn't happen, unable to find anyone else to hold responsible, they blamed me, held up to represent all those 'nasty benefit scroungers' so bemoaned for a whole variety of wider social problems.

The current
climate is one where many disabled people are afraid. The Disability Discrimination Act is toothless, hate crimes against disabled people are on the rise yet not given the recognition or status of other hate crimes, access to services is routinely denied by local authorities, and the vital financial support provided in the form of benefits is being attacked by a government determined to demonise the most vulnerable as they turn their backs on the true issues facing the welfare state.

There is just one major commonality I've found within the disabled community. Political engagement. So many aspects of our lives are affected by even the most minor political changes that without exception the disabled people and their carers whom I have met have all had strong political opinions. Voting is important to this group.

So, just who will disabled people be voting for today? Those with learning difficulties are likely to be ruled out by the inaccessibility of the process and lack of suitable information. Those with physical disabilities are also subject to access issues. In the last general election access to my local polling station was via a muddy track. I collapsed when I arrived, had to be given a chair, water and assisted back out. Those helping me told me that earlier that day they had carried someone from the car to the booths as it was impossible for a wheelchair to access. When I arrived to vote today I was, laughingly, informed I was late. The men who register the votes had expected me earlier in the afternoon. Amongst what they expected to be around a 25% turnout some of us are more noticeable than others. Not necessarily for the right reasons. Postal voting has helped, but for those who have issues with their signature it can be a complicated process, and many, like myself want to feel engaged with the process by physically going to register their vote.

I have no idea who the disabled vote will go to. I just know this. I cannot bring myself to vote for a party so desperate to label the most vulnerable as scum. True equality seems very distant today.


Today is Blogging Against Disablism Day. Click here to view the other posts.

Wednesday, April 07, 2010

Don't bother...

I'm not sure why, but regardless I'm doing a pretty good impression of a sulky, petulant child today. Perhaps it's because I'm so tired, perhaps because my hip is doing a better job of hurting me than any paratrooper PT instructor could do, or just because because.

Being turned down for the Community Care Grant I applied for back at the start of February has absolutely definitely got something to do with it though.

I phoned yesterday to try and chase up what had become of the form neighbour and I spent hours filling out. After the obligatory time on hold I got through to an unusually honest lady who told me that I could try phoning back but not to bother because I wouldn't get through. The telephone software used by Jobcentre plus* is set up to allow 70 people waiting on hold to ask for application forms but only 20 for enquiries about existing applications. If you're unlucky enough to be no's 21 or 71 in the queue the system cuts you off. Politely mind, there's no swearing or anything, just a dead phone line. Which is not good for the blood pressure after endless time spent trying to press button 1 to speak to operator 2 about issue 3 dealt with in department 5 living in corridor 6 all whilst desperately trying to stop the grinding of teeth in time to tinny classical muzak. I needn't have bothered, just holding the phone to my ear is enough to make my shoulder dislocate.

The Community Care Grant was for all the specialist bits and pieces I need to take life that bit closer to living and away from existing. A proper Tempur branded memory foam mattress, a mobility scooter, ramps and a storage shed. Oh and I think we put down a specialist shower seat too. Call it a crippled wish list if you like. I certainly wasn't expecting to get funding for all those things but was hoping if I put them all down and explained why I needed them then at least part of the grant money would be awarded.

I should know better by now than to hope for anything approaching a sensible decision from the insanely bureaucratic system we currently have in the UK. If I was naive enough to believe a change in government would make any difference then I'd wait and reapply in a few months time but that would be stupid. And stupid I am not.

It seems that my grant application was turned down in February, within a few days of the social fund receiving my application. Except no-one bothered to enter the details of that application on the system. So there it sat until I managed to get through to someone this morning by employing the cunning tactic of phoning whilst Jeremy Kyle was still on TV. The very nice and also honest lady who was trying to help me explained that I would need to appeal against the decision.

The details are a little fuzzy as I was tired after a night spent dislocating on an unsuitable mattress but let's gloss over that part. It was something along the lines of the nice lady entering a special note on the system to allow me to appeal a decision that wasn't entered on the system 2 months ago. The special note was needed because to send a decision for review or appeal it has to be within 7 days of that decision being made and I'm some 2 months late.

Yes, you did read that correctly. The system is so gagged by bureaucratic nonsense that permission has to be given to appeal a decision no-one notified me or their own system of.

Of course, designing a system so hideously complicated no-one understands it, then automatically rejecting applications anyway couldn't have been the original purpose. Could it?






*who, as part of the department of work and pensions oversee all social fund applications. Confused yet?

Tuesday, April 06, 2010

"But I have promises to keep, and miles to go before I sleep"

Many of you will already have seen the news that insurance company Abacus is putting the claim of 20 year old Private Dave Tatlock under review after seeing footage of him carrying out the Carling Cup at Wembley.

Private Tatlock of 2 Para was left temporarily paralysed after being hit by 'friendly fire' in Afghanistan in July 2008. Like many soldiers Pte Tatlock was paying £56 a month to Abacus who specialise in providing insurance to the armed forces. He was expecting a £25,000 payout for the loss of use of his left foot until Abacus contacted the military rehabilitation center Headley Court to say they would be reviewing his compensation.

Doctors had originally told Private Tatlock he was unlikely to be able to walk again, but he is now able to move with the aid of a stick. "My calves don't work, my hips don't work properly, my glutes (buttock muscles) don't work properly-waist down is just messed up basically"

It seems that Abacus wanted to review the compensation after seeing Pte Tatlock walk a few steps onto the pitch unaided, even though an assistant carrying his crutch could clearly be seen next to him and the effort of those steps etched allover his face.

Bureaucrats face mountains of paperwork to climb, but rarely anything more challenging in their day to day work, so perhaps they can be forgiven for not understanding the kind of mountains most disabled people have to climb every day. Or perhaps I'm just being nice to faceless organisations who don't deserve any such kindness. It's not just Abacus who behave in such an underhanded way when refusing insurance claims, all insurance companies do that, even the one we in Britain think is supposed to protect us if we become sick or disabled-the department of work and pensions. Whilst many members of the public will be shocked at the way Abacus are treating Pte Tatlock, no disabled person who's had to claim benefits will be.

To rehabilitate as successfully as Pte Tatlock has from such severe injuries takes something no policy or claim form could ever record. Something which escapes definition but is the vital ingredient in any kind of rehabilitation. Some sort of personal characteristic which most of our injured soldiers share and bureaucrats don't.

I can't explain to you how Pte Tatlock managed to walk those few steps unaided any better than I can explain how I manage to take mine. I can tell you it has little to do with physical weakness and everything to do with mental strength, that it requires a persistence bordering on derangement and stubbornness any mule would envy. None of which are rateable in a tick box form designed by people who wouldn't know a mountain if it stared them in the face.


Spoonie Songs

This is my current fave, what are yours?


Monday, April 05, 2010

A Gangsta eye view...

I asked Gangsta Guy to write something for BSS about dating a cripple. This was his response.

"It's dead good. Especially the clicky bits."


So there you have it. Date a cripple cos it's dead good it is.

Thursday, April 01, 2010

So long and thanks for all the fish...


Fishy and Fish moved in last year in my misguided gift to Bendycat. I must've been spending too long observing politicians as they're the only others I know who'd give someone a present that made their life worse. Poor Bendycat, it's been like having a lunchbox she can't open. Fishy and Fish were never bothered by Bendycat's taunting, it was the goldfish hate crime experience that gave them PTSD.

Like most of my pets, with the exception of Bendycat and her bendycat mum, Fishy and Fish have now moved out to their new homes. No, not to the farm Joey Tribbiani's pets go to, but to an actual other home. An improvement since that first goldfish which my father flushed down the toilet along with a story about how it would live happily ever after in the sewers. I still have occasional nightmares 30 years on about ginormous goldfish swimming up the toilet to drag me down into their oversized sewer home. After that there was another goldfish who had to go and live in a friend's pond it grew so much, then Sunny the budgie. A present for my 12th birthday Sunny terrorised the house during his short reign. He would sit on a high shelf, delighting my parents by crapping all over their bank statements and occasionally venture upstairs, usually in the early hours to wake someone up by crapping on their bed. I loved Sunny. Unfortunately he got really depressed and went to live a happier life amongst other birds in the big aviary down the road.

With that kind of track record it's no wonder Fishy and Fish the 2nd look a bit lost in their new home. They'll either be dead in a week or I'll be trying to rehome them in six months when they've outgrown it. Fortunately my lovely carer now has a nice big fishtank for Fishy and Fish the 1st to live in, where in time they may be joined by Fishy and Fish the 2nd. As for Bendycat, she'll have to work on her motor control skills as much as me if she wants the tempting little snackettes in the tank...