Stupidity interlude.

So, I was debating whether to include this or not, since it’s not disability related, but yesterday I got literally the best A+E care I have ever recieved in my life.

And it was over stupidity. Or rather, it was over using a product *exactly* as the manufacturer intended, and then my own weird biology causing problems.

The problem was, as you might have guessed, a kegel ball.

I love kegel exercisors. I find them extremely soothing and stress-relieving, as well as occassionally arousing and generally good practise for sets of muscles that don’t get much use otherwise. I have several sets of them – A silver plastic “jiggle” pair that I never use, due to them being so badly constructed (Really, a woven cord on an insertable toy? Breeding ground for infections. Use once, then relegate to being a cat toy), a weighted silicone and ABS pair which looked too much like a dead mouse for me to use, and this pair – Two glass eggs in a silicone harness, sold with the instruction that they could also be used without the harness. And, in fact, kegel exercisors where all you get is two spheres/eggs, and nothing more are pretty common. So trying them out for the first time without a harness wasn’t exactly a silly idea. And using them without the harness was, I found, a lot more comfortable and pleasant than using them with a harness. I could move around without worrying about the semi-rigid connector between them pushing them into the wrong place, or the external strap catching my external bits.  And basically, I could suck on them like they were boiled sweeties. This was good.

So, time passed and I decided to remove them. One quick “Thloop” and I’d got the first one pushed out. Waited half a minute, then tried the same trick with the second one. No luck. Reached up to look for it – Can’t find it , even with a fingertip. Try squatting, pushing, jumping, stretching, jogging up and down the stairs and phoning friends in desperation to get it out.

No luck.

Further investigation eventually finds it, stuck up around a corner and three-quarters buried inside a muscle that won’t let it out. Attempts at getting it out with two fingers just results in two dislocated fingers and a dislocated wrist.

Partner gets home, by which point I have taken enough diazepam to turn an elephant in musth into a purring kitten, and with pelnty of lube and reassurance, he tries to get it as well. He manages to make it spin in place, but not to go anywhere. We have a bit of a giggle whilst doing this for the length of two episodes of Frasier (Including him picking me up and shaking me like an errant piggy-bank) and then finally give up. It’s now midnight, and I’m off to accident and emergency at St J’s, because I know they’ve got a really good gynaecology department if everything goees tits up.

I get settled in, (Everyone is remarkably nice to me and not mocking at all, desoite the fact that I feel like the adult version of the schoolboy that’s stuck a marble up his nose and now has to get help to get it back out) and by about 1am, I meet Dr Daisy (Not her real name, but since I’ve not met her before and probably won’t again, she’s not getting included in the usual initial-only naming scheme, since that’d confuse the issue). By this point I am in a LOT of pain. Cramp is starting to set in, and my hips are variously dislocating and spasming, along with everything else. I take a few more shots of morphine, and am offered a diazepam. And then, once it’s set in, over to the room with a proper door we go. Plastic speculum, warm bowl of lube.

And Dr Daisy doesn’t even bat an eyelid when I say “Can I do this myself?”

She just happily sits and directs, telling me when she can see the ball, telling me if I need to go left or right, or push in further, or rotate the speculum to get the blade underneath the ball, or angle it slightly differently, or open it further. Every few minutes, I get her to hold the speculum still, to allow me to relax my hands and fix them. After about half an hour or so, I feel a click. She tells me to try releasing the pressure on the speculum – It doesn’t close; It’s gripped the ball! Slowly, slowly, out it comes. She looks about as delighted as I feel. Freedom!

And that, my dears, is how you conduct a medical procedure. You trust the patient, you help them to solve the issue on their own, and you don’t dive in speculum-first and demanding things. This was a lot quicker, a lot easier, and a lot less traumatic than it could have been. And I got my ball back.

Rheumatology reprise

Well, today was Professor D at rheumatology at SJ’s – Which was a surprise, since up until yesterday afternoon I’d been expecting Dr W at CA. So that wasn’t a bad thing, just a surprising thing, to be going to a new hospital.

Anyway, he was extremely helpful on most fronts;

-Referring me to a hip specialist, to think about surgery on the bad hip, since that specialist would also be the one who would want the MRI.

-Reminding the pain team that I exist and getting me shoved forwards in the waiting list for CBT for pain.

-Getting me back into physio. Yay.

He also reccommended topical NSAIDs for the right hand, which might work but will be expensive since they’re not on prescription.

And then on the way out, the porter managed to clang my recently-dislocated hip in a door. I screamed loudly enough to bring in the entire ward. He was very apologetic though. And then the taxi driver was incredibly invasive and pushy and unpleasant to the point that it felt like assault, so I ended up geting out of the taxi in standing traffic and fleeing into Emmaus. Wherein I bought a Big Book of Birds (With gorgeous illustrations by Arthur Singer) for two pounds, a new leather jacket (one of the nice double-breasted ones) for ten pounds, which fits me perfectly and feels like the kind of jacket that I will never want to take off, a black and white striped shirt – to go with all of my other black and white striped shirts – for fifty pence, and a collection of paisley silk ties for twenty pence each. Happy days.

I’m now back at home and dealing with the University, who seem to have dropped the ball a little bit, Everyone is still very much on my side, but oh dear.

A horrible set of assumptions

There’s a refrain that I keep hearing;

“Oh, that’s really good of them”

That’s referring to my partner, or sometimes to my friends. And it’s for spending time with me.

Not just talking about the times that they’ve taken me to hospital, or the times that they’ve made me food or reassembled me or looked after me whilst I was morphined unto oblivion for my own good, but talking about spending time with me at all. Going to the pub with me, or the cinema, or having tea at each other’s houses.

It’s almost as if some people don’t know how to parse the interaction between an obvious cripple and a non-disabled person, or a less-obvious cripple, other than assuming that the one who isn’t held together with elastic bands is a carer of some kind. Whether paid or unpaid, people assume that the primary feeling or responsibility that someone is going to have towards a disabled person is caring.

Now, this isn’t to say that I don’t care about my friends, or that they don’t care about me. We do, indeed, all care about each other. But it’s not “caring” in the “has a carer” sense. My best friend doesn’t wash my hair like some kind of Florence Nightingale figure, endlessly lavishing care onto a castrated lump that’s only capable of responding with gratitude. He washes my hair because we’re friends, and friends help each other out. And then I go through to the workroom and critique his latest projects, because that’s a way that I can help him. And then he tells me the potted history of the fly button, or something like that. Then I build a push-mould to make historically accurate fly-buttons for his trousers. We help each other out, and it just happens that, much like he needs a sculptor to make protos for him to electrotype, I need someone to wash my hair and cut my toenails.

I feel like I should write this as a quick list.

Things that being friends with a disabled person will get you;

– Friendship

– Cheap seats at the opera

– A new appreciation for hot water bottles

Things that being friends with a disabled person won’t get you;

– Good karma

– Inspiration to live your own life to the full

– Brownie points

– A fucking medal

The thing is, the people who say “OIh, you must be a really good friend!” to my friends, just for being with me – I can only assume that they don’t have any disabled friends. Or that they can’t imagine being friends with a disabled person. Or that they don’t think that disabled people could be an equal partner in any kind of relationship. Or that they think that disabled people can’t have the kind of qualities that could make someone want to be their friend. I’m pretty sure that my best friend sees my disability as being a bit like my being extremely tall, or my having a pet greyhound; It’s not why he’s my friend, but he’s not my friend despite it either. It’s just one of many slightly unusual and sometimes slightly inconvenient facts about me that subtly colour our interactions – Not the quality of them, just the practicalities of them.

This all gets worse when it’s addressed to my partner. We’ve been together since I was about nineteen, and in that time I’ve gone from incredibly fit and outdoorsy to basically housebound. So people say that it really shows his character, for staying with me (Subtext; “When he’s a good looking bloke with a steady job and a nice house, who could just as easily be with someone non-crippled”).

The thing is, this does worry me. I *know* that it’d be easier for him, on a purely practical level, to be with someone who isn’t crippled. To come home from work and not have to cook for both of us, and look after the dog, and massage the cramp out of my ruined hips and shoulders. It’d be “fairer” on him, as an NHS nurse once helpfully reminded me “If I could be a proper partner and go out with him to the pictures or something, since it wasn’t fair on him being stuck in the house all the time”. It’d be easier for him to relate to other people our age, when their partners were talking about jobs and children and marriage and holidays, to not be worrying about inpatient care and making the house wheelchair accessible and trying to arrange respite for us both.

But then I talk to him, and I realise that to him it’s just normal. He’s not interested in a hypothetical perfectly-fit-partner. He’d no more avoid being with my for my disability than he’d avoid someone else for being obsessed wtih model trains or for having three cats – It’s just part of the deal of being with me.

Anyway, more philosophical in the morning. Right now I’m tired and high.

A Rebuttal to the Physician at the Centre for Policy Studies.

The Centre for Policy Studies (Motto “To question the unquestioned, to think the unthinkable, to blaze new trails”, or possibly “To generate hate-clicks”) released this lovely article today;

Illness as a Career Choice, by Administrator CPS

(Don’t worry, I’m going to replicate basically the whole thing below if you don’t want to give them clicks.)

The writer was “A physician with a practice in the North-West.” and honestly, the simple fact that nobody is putting their name to this suggests that they know that it’s basically hate speech, and that it’s doing nothing but add to the amount of discrimination and suspicion that disabled people are put under.

So, let’s begin;

It is vital that those suffering from disabling health conditions are well supported by the welfare system.

Excellent. We can stop there and go home for tea. No more input required, you’ve got it right.

However it is my belief that in some cases well-meaning welfare provisions can end up having severe unintended consequences.

Oh, goody. Please, share your wisdom with us. Anyone who phrases it like that is never going to go on to say anything like “Assessments and conditions intended to make the process fairer are actually hurting disabled people and often removing their safety nets from them.”

Onwards;

As a physician I have previously worked in areas with a broad range of demographics [Translation – Somewhere with nice middle-class people in it too, not just stupid tricksy povvos] and have seen the various stimuli that lead to and from ill-health. A fact that many [how many?] on the inside [who?], but few on the outside know is that a common driver to ill health is the welfare state [citation needed]. In short, it appears that being sick has become a way of life and a career choice for a worryingly high percentage [how high?] of the population. [citation needed]

So paragraph one seems to say “Us doctors think that people decide to be ill in order to get benefits”. If that’s really the attitude of most of the medical profession, then we’re going to need a radical overhaul of the whole system. Doctors are meant to treat the sick, not prop up the state’s scapegoating rhetoric.

Disability benefits have the potential to inadvertently encourage a state of dependency, and incentivise an individual to remain sick. [Because people can absolutely will themselves to not be ill! If I just concentrated a bit harder, my hips wouldn’t fall out of their sockets every few steps.] Two patients can have identical pathology – for example identical objective deficits from multiple sclerosis – but with striking differences in illness behaviour.

Surely, then, they’ve got a different pathology? Illness isn’t just “Objective defecits”, it’s a complicated interaction involving all of the body’s systems. For example – Someone with a lower Beighton score might have more pain that someone with a higher one, but the person with more pain may be more mobile. It’s complicated.

It its current form the welfare system is prone to misuse.

Figures released earlier this week by the DWP itself (July 2014), reminding us that only 0.7% of benefits are overpaid due to fraud, and that only 2% of benefits are overpaid at all. Just to put this concerned physician’s feelings into perspective.

For those in legitimate need, disability benefits can enable them and restore livelihood. For others however disability benefits can incentivise work avoidance.

Not certain how someone can be a doctor without knowing this, but some disabled people will never get better. And another friendly reminder that PIP (Personal Independence Payment) is an in-work benefit, paid to make up the difference between how much it costs to live as an abled person and as a disabled person. It’s about twenty to a hundred and thirty eight quid a week, and to get that highest rate you have to be extremely crippled – As in, unable to walk more than 20 yards, probably intontinent, incapable of washing self. ESA (Employment Support Allowance) tops out at about a hundred and eight quid a week, which isn’t exactly footballer money either. So yeah, if you’re willing to commit to living on less than £1,000 a month, before tax, to attend the jobcentre constantly for “interviews” with an “advisor” and to go on interminable training courses, and then to have to reapply for ESA again every year, which will leave you with a fourteen-week gap with no money in which you’re not allowed to work, and thus basically three months of living on £400-ish… All the while “faking” a disability, then be my guest.

But how extensive is the problem? How can a doctor tell if symptoms are being exaggerated? We are advised in medicine not to use the word malingering, but rather ‘subconscious amplification of symptoms’. It can be very difficult to know how much is subconscious and how much is amplified. One informal survey of colleagues from around the UK placed the figure at between 10% and 90%. Interestingly, if the question is restricted to doctors working in areas of high unemployment then a much higher figure is reached. This is of course not surprising as the alternative prospects for individuals are far more limited.

The colossal margin for error and the increase when looking at areas of high unemployment actually says a couple of very different things to me; a) That an “informal survey of colleagues” means “I phoned some of my mates and they agreed with me” and b) That this has a lot to do with the subconcious prejudices of doctors against the poor and working-class.

It’s a vicious cycle – Doctors “know” that the poor are just out for all they can get, money-for-nothing, and probably drug-seeking bad-back-fakers, and thus doctors observing poor patients in pain will assume that they’re malingering. And no, dressing it up as “Subconcious amplification of symptoms” is just a code word. That’s like saying “I didn’t say you were hysterical, I said that you were suffering from delusional and disproportionate anxiety”. Wrapping things in prettier words whilst maintaining the underlying bias is not progress.

As an illustration, an intravenous drug user I once saw had lost use of his arm because of a drug-related incident. When I told him that he would not recover the function of his arm I was expecting great disappointment, but instead got the surprising reaction, “great, does this mean I will get benefits?”

That actually sounds like the kind of gallows humour I’d use in that sort of situation too. It’s the writ-large version of “Migraines are hell, but at least I never have to buy eyeshadow”.

When the disability reassessments were introduced a couple of years ago many colleagues saw a sudden and unexpected worsening in patients symptoms. Patients who previously had well-controlled epilepsy reported more seizures or that their pain had worsened. As well as costing the system, it also makes the doctor’s role difficult in trying to judge what is true illness and what is amplified, leading to more investigations, more hospital appointments, more drugs.

Translation: “Sick people suddenly placed under a lot of stress had massive flare-ups of their condition.” Anyone who is shocked by this needs to go back to first year.

Such over-dependency can have a distortionary effect on the wider economy. Individuals on chronic welfare [That’s a new way of making long-term claimants sound suspicious! And it chucks in a nicely ableist comparison too! Well done!] increasingly move from the affluent South-East to the North because there is a greater availability of social housing, and living costs are lower.

Translation: “Poor people in going-where-it’s-cheaper-to-live shocker”. And let’s not forget that London is exporting its council tenants.

In contrast, talent migrates from the North to the South-East because of better prospects. This then compounds the situation. It is an interesting observation that the area of the country with by far the lowest per capita spend on infrastructure, the North-East of England, has the highest welfare spend. In effect, successive government policy has attempted to enforce a deal on the population of providing the South with the investment and tools to generate the returns and then transfer some of this to the north in welfare payments. In crude terms, investment follows place (South), welfare follows people (North).

That is probably the worst attempt at understanding cause-and-effect that I’ve ever seen. If you put it as “Due to the Government’s failure to invest in the North East, a large percentage of its most able inhabitants have moved south, leaving disproportionate numbers of poor and less-educated people behind. Sometimes people are poor and less-educated due to disabilities which make it difficult to work or study.” it places the blame more solidly at the correct door. Also, the further use of the North East as being a land full of mythic benefit-cheats and lost-causes is really, really classy. Nothing like using a cheap and unfair stereotype to back up your bigoted views.

More importantly, over-dependency is not good for the individual. They become locked into a way of life with reduced well-being, and the attendant inactivity for many patients leads to further illness and obesity. Most significantly, I have observed that not working can result in a loss of sense of purpose, of personal value of being in a team.

Another paragraph of “People are only ill because they’re not trying hard enough!” followed by;

Not only does the current welfare system incentivise false claims, it can also overlook legitimate ones. Many doctors have patients who they think deserve benefits yet don’t get them. Or the receipt of benefits is unacceptably delayed.  Thus there is a mismatch between patients on long-term benefits driven by the financial incentives of the system and becoming less employable, but other patients who we desperately want to get better and faster support. In essence, the disabled are suffering from the actions of others.

Which seems to be trying to place the blame for the DWP and Atos’ slow processing of claims onto the 0.7% of fraudulent claimants. But since the writer won’t admit that it’s only 0.7% of claimants, it’s basically an attempt to divide the disabled, and to make them look at each other and see enemies and fakers. And I’m fairly certain that the “patients who [the doctors] think deserve benefits” is basically code for “Nice middle-class people”, especially since I can only assume that this is from the same survey as the writer’s earlier “informal survey” of their friends.

Why does the assessment system not weed out such cases? [Another reminder of that MASSIVE 0.7% fraud rate, by the way.] Firstly, I believe that welfare assessment should focus on what can be done, not what can’t be done. The ability to accurately assess disability and levels of dysfunction can be very difficult. In some cases even skilled physicians with decades of experience can get it wrong. [And yet the DWP believes that an hour with their nurse is more valuable than several years with your own consultant] The inaccuracy that results is compounded further by the current assessment procedure, which pressures physicians to not be entirely open. This is because the patient can review the report before it is sent off for approval. A doctor’s performance is determined by their patient throughput and number of complaints received. Thus by conceding to a patient’s expectations a doctor can avoid a potentially hostile confrontation and complaints on their record. Indeed the degree to which patients can pursue doctors who do not give them what they want is so great now that once one has been bitten, the easy option is much more likely to be followed.

Shock! Horror! Doctors might have to actually consult with patients when talking about them to a third party! Patients might have more input and insight on their daily lives than a doctor has, despite the doctor seeing them probably less than once a month and the patient only being with the patient every day! If you’re a doctor, and you’re getting endless complaints from patients who think that you’ve misjudged them and who are demanding a higher standard of care… Maybe you’re just not a very good doctor. Maybe you need to look at them with a little bit more compassion, and actually listen to their problems and trust that most people are really quite understated when talking about their symptoms. Maybe you need to question what you think the role of a doctor is, if you don’t believe that they should be accountable to their patients.

In this regard I believe the views of the ex-head of the NHS litigation authority were shockingly naive when he stated that if we eliminated errors there would be no complaints. In reality the relationship between errors and complaints is surprisingly shallow. [citation needed]

Some doctors will provide diagnostic labels which provide a potential ticket to benefits, which if examined closely are part of the normal spectrum. A common example I see is patients being diagnosed with joint hypermobility syndrome with associated pain.

Because apparently this still needs clearing up;

Being A Bit Bendy is the state of having very supple joints which allow you to attain postures considered unusual by most people. It is not painful.

Joint Hypermobility Syndrome is a condition which involves defects in the production of collagen and the sometimes the formation of bones, which results in chronic pain, complications in multiple organs (Skin, gut, heart and eyes being the most common) adrenal problems, digestive problems, anxiety and depression, and a whole host of other problems. The DWP even has guidance on it, so possibly the writer just needs to learn to use Google. There are a huge number of ways that hypermobility and “being a bit bendy” are really, really difficult and I would have thought that was the sort of thing that someone had to know to be a GP. Kind of like telling the difference between being a bit short and being an achondroplasic Dwarf.

Anyway, not far to go now;

When does a flexible patient become hypermobile, and why does this lead to some developing chronic pain and on benefits?

The first half of that question is actually really interesting, but is still better phrased as “Why do some hypermobile patients remain asymptomatic, when some have serious losses of function and chronic pain?” since we’ve already determined that “flexible” and “hypermobile” aren’t really related. There’s huge amounts of research being done by various EDS foundations to try to work out how to keep us asymptomatic, because it gives us a better quality of life. The “On benefits” part of the question is probably best answered with a very simple “If someone is really badly hurt, and can’t work, then the nice Government gives them money so that they don’t have to beg on the streets. If they’re not hurt, the government won’t give them money, and they have to go to work. The government takes a tiny little bit of money from all of the non-hurt people who are at work, and gives it to the people who are hurt.” but that’s the kind of explanation that I would expect to give to a toddler, not a physician.

Or take depression, which affects 1/3 of the adult population at some stage. There is a big difference though between someone needing sectioning and ECT, and someone needing citalopram and a bit of cognitive therapy.

There is a big difference – And that’s why someone who takes a little bit of Citalopram for a few months isn’t going to get disability benefits. Or if they are, it’s going to be at a very low rate, and it’s basically going to make getting to-and-from work easier for them, so that they get to keep their job. More likely though, they’ll at most be signed off with statutory sick pay for a few months, then go back to work as soon as they can. Because not everyone who applies for benefits gets them – The type of mental illness that gets you disability benefits of any kind is the type that’s lifelong and absoutely wrecks your ability to function.

That’s the end of the main article, by the way. The writer seems to think that this is some kind of trump card. They then go on to some “Proposals”;

 1. Doctors reports should be anonymised and made confidential. The current forms are better than the previous ones, but need support from non-assessment service doctors and this will work best if those doctors can be open and frank.

Counterproposal – Doctors should discuss with their patients what their expectations are and encourage them to be honest about their symptoms. Doctors should believe their patients, because they’re doctors, not detectives.

 2. Illness/disability benefits assessments should be designed to identify activities which an individual can do, not what they can’t do. The Government must encourage the full range of mental, physical and social activities. [Orwellian, much?] For example, if an individual took extra welfare support for one domain, they would be required to utilise other domains. e.g., if a patient were wheelchair-bound but had full mental faculty then financial support would be provided to assist with mobility only if they were active in terms of work (even if only voluntary work) that required their mental faculties or social engagement. Conversely an individual with mental health problems and unable to function in a stressful work environment could be supported in using their physical abilities, for example with manual work or even befriending lonely elderly individuals.

Counterproposal – We do not have to prove ourselves useful just to survive. The writer’s attempt at making a mind/body dichotomy is ridiculous. This whole section is even worse when we remember that they’re talking about people who are currently just considered to be too ill to work. Physical illnesses come with pain that makes it difficult to concentrate. Physical illnesses often result in simple tasks like getting dressed or eating a meal taking much longer than normal, thus making it impractical to work, since the employer could not rely on attendance. Mental illnesses cause fatigue and lack of energy and inability to socialise – It’d be downright cruel to the elderly to inflict depressed-me on them, for starters. Having obligations to the Government, which you have to complete to get paid your benefits, is incredibly stressful even if it is just “Manual labour” and I can’t imagine that being good for the mental health either.

3. For conditions which can be ameliorated by the action of the individual, greater emphasis should be placed on determining the right balance between disability payments and programs that emphasise greater personal responsibility for recuperation.

Counterproposal – I do not want this writer, or anyone who has as little contact with me as an ATOS nurse or a DWP official, deciding for me what the “Right balance” is between giving me money to let me continue living, and taking money away from me as a punishment for not getting well fast enough. Funnily enough, having money allows claimants to do things like get to their hospital appointments, go to the gym for physiotherapy, buy healthy food, keep going out to maintain a sense of self-worth, and things like that. Basically, all the things which give them a higher chance of one day rejoining the workforce. And they’re more likely to do those things if they aren’t being forced to do them on the DWP’s timescale.

Honestly, I hope that the original article was written as a deliberate parody.

Physician, how do you justify your position, considering that it’s so based in a mixture of ableism, victim-blaming, class stereotypes and having swallowed the Tories’ spin hook line and sinker?

Yours faithfully,

-Percy

(A proud Geordie with a bad back, hypermobility syndrome and depression. So probably just worthless scrounging scum, really.)

The saga of this sodding bus pass

So, even though I’ve not been on a bus since June. I’ve been applying for a disabled bus pass, because it allows me to get a discount card which lets me get cheap access to council gyms and swimming baths. The idea is that this will make things cheaper.

To do so, I need some passport photos (Usually about a fiver) and a note from my doctor saying what’s wrong with me. Now, the doctors’ note is crucial in the application – It has to get across the fact that I can’t walk, and that I am basically really, really ill.

So I asked the people at RL to fill out the form for me. I handed it over, and waited a week.

Yesterday I rang back, and it had been filled out. And at this point, the receptionist said “Oh, you do know there’s a seventeen pound charge for that, don’t you?”

After the job had been done. When it became impossible for me to say “I don’t have seventeen pounds. Literally. At all. I’m waiting on a pay packet and it’s probably not even going to BE seventeen pounds after it’s been through the rapacious hands of the currency converter.”

But anyway. I borrowed the money from a friend and went to the surgery to pick it up. And what had been written was this;

WIN_20140910_175138

Twelve words. Twelve words which must have taken about thirty seconds to write. At a rate of £1.42 a word, or £2,040 an hour. Which doesn’t say “And thus basically can’t walk more than a hundred yards” which is the only part that’s important to the bus pass company.

Anyway. Need to go to the Post Office to get my photos done (A 300yd walk, which is going to take me about half an hour each way, since I’ll need to rest a few times). So obviously, I want to phone ahead and find out if the post office has a photo booth. And lo, it’s the only post office in the area that doesn’t have a local number, it goes straight to the Post Office’s switchboard – Where they’re not going to know if it’s got a bloody photo booth or not. So I might be making a half-mile round trip, and wasting most of my afternoon, for nothing.

And finally, have had to order a copy of my council tax bill becuase they need two forms of ID, and one of them has to be either a utility bill (I get mine electronically), a council tax bill (yearly, so not within the three-month bracket), or a rent book (I’m mortgaged). Which will take “A few days” to be dispatched.

And then it’s going to take about a fortnight to be processed, and then another ten days or so to arrive. So about a month to wait, really, from the day that I send it off.

Cost of this bus pass – Already up to £23 (and there’s no guarantee that it’ll get processed at all). Plus the £10 for the nondisabled discount card that I’ve already bought, and the £2 for the disabled discount card that I’m still going to have to buy, and that’s £35. For £3 off a swim, I have to do ten swims to make back the cost of the pass. So that’s about a month. Fuckssakes.

Being disabled is basically just a matter of the paperwork heaping up until it kills you.

The Fabled Physio Pack

Thought I may as well scan this, since it’s useful info for bendies of all stripes. This is the thing that’s send from UCLH to the GPs of people with hypermobility syndromes, to be put onto their files permanently and basically to be given to their physiotherapists from now until the proverbial cows come home.

 

The missing words on page 3 are “Report sexual and reproductive difficulty” and the missing words on 6 are “Graduated exercise programmes” because the scanner was set to automatically crop, and so it lost some words.

 

They’re a good start, and there’s stuff in there to kow even if you aren’t a physio. And the references all make for good reading too.

HMS1 001 HMS2 001 HMS3 001 HMS4 001 HMS5 001 HMS6 001 HMS7 001 HMS8 001

Well, that was quick

WIN_20140904_142430

I posted my PIP2 (“How your disability affects you”) form on about the 31st of August.

 

Got this today, saying that it’s been processed and that I can expect to get my assessment date within 12-16 weeks. So about four months. It rings wrong to me that their nurse or physiotherapist can see me for an hour, and overrule the professional opinion of a consultant rheumatologist who knows me pretty well, and the UK’s leading specialist in hypermobility who has also personally seen me, but ours is not to question why.

 

Now someone is going to have to read my 6,500-word essay on “Why I Am So Disappointing” and then give that to the assessor.

 

Come to think of it, I don’t know what the original letter is for, if they’re going to assess me themselves anyway. Maybe so that they can form a preconcieved picture of what I’ll be like before meeting me, and then be shocked when I don’t look or act like that. Or maybe just so that I’m particularly ground-down and woeful from having to ennumerate my flaws in print. Or, charitably, to give me crib notes for before I go along to the assessment.

 

Either way, it’s ATOS that have me, not Capita. So that’s… A thing.