Pics or it didn't happen

Today I coughed, and then I screamed in pain.

It's now 9 days since I wrecked my shoulder.

I did it on Boxing Day. On the 27th I managed to escape from the arse-end of nowhere and get back to London so I could go to my local A&E. It really wasn't much better.

I arrived, was seen by the triage nurse, and was sent to x-ray in only a few minutes. Well, the triage nurse pulled a doctor aside and said "she's crying in pain." I wasn't really. I was crying because:

But I didn't bother to shout after her and correct her.

I initially stopped by the seats outside x-ray, and continued facing the direction I was facing anyway. But I became aware of the flow of air as people walked close to my shoulder and turned around so my good shoulder was facing outwards before someone knocked it.

I had 3 x-rays taken this time. I heard a voice bellow along the corridor "it isn't dislocated" and knew they were talking about me. (I never, for a second, thought it was dislocated.) I was then swiftly downgraded from A&E to the Urgent Treatment Centre.

I really wasn't sat there very long before I got called in by a doctor. I once again told the story of what happened, "no, I didn't fall over," blah, blah. You know all that from my last post. The doctor looked at my x-ray, came back and told me that he couldn't see any fractures. And proceeded to treat me like I had a small bruise. Unlike my dad's local A&E they were polite about it, but still didn't care. "Urgent treatment centre" is a bit of a misnomer if all they do is pull you aside for a "there's nothing wrong with you" talk.

Well, they gave me a prescription for some 30/500 co-codamol and offered me a sling.

I'd already explained to him that osteogenesis imperfecta most famously affects bones, but actually it affects every single tissue in the body containing type 1 collagen. Which is every tissue in the body. Tendons, ligaments, muscles, blood vessels, even skin. All affected. But as I said in my last post; doctors think if you've got OI and not broken a bone, there can't actually be anything wrong with you at all. Explained it to him, all of it.

He said that if I couldn't manage at home, they could admit me until I got some social care.

"If you admit me, will that get me an MRI and a diagnosis?"

"An MRI wouldn't show us any more detail than we can see on the x-ray."

"You can't see soft tissue on an x-ray."

Even when you waste your breath explaining that OI doesn't just affect bones (something they should have learned in medical school), they still don't listen.

"Well, no, we wouldn't. We'd literally just keep you here until you got some social care."

"Right, I'm going home then."

Every time break my toes I'd be eligible for medical care, but I don't bother wasting my time or their money because I can strap it up myself and it's not like they're particularly painful unless you try wearing shoes.

When I actually needed medical care and asked for it, I was treated like I had a bit of a cramp.

When I snapped a rib gardening I didn't need to call an ambulance. I packed up my gardening supplies, came inside, took painkillers, waited for them to work, then cooked my dinner. The next day I went shopping, which entailed lifting my wheelchair in and out of my car. Didn't need medical care, even though I'd have been eligible for it.

I haven't left my flat since I got home from the hospital that night because I can't drive my car or push my wheelchair. I can only prepare foods that can be made one-handed. But I'm not eligible for medical care because it doesn't show up on an x-ray.

When I fracture the little bones in my hands and feet (which I usually do a couple of times a year) I usually just say "fuck", tape it up, and carry on with what I was doing.

When I got home from the hospital on the 27th I tried moving my arm to put talc in my armpit and screamed so loud I woke my hard-of-hearing upstairs neighbour. But I'm "lucky" to have "just a soft tissue injury" according to medical "professionals".

I wish I'd got the memo where it was decided by the NHS that policy is "pics or it didn't happen." Which is really what's going on here. If it can't be seen on an x-ray, it's not real. Or at the very worst it's just a small bruise.

Even if you can't move your arm.
Even if you can't drive your car.
Even if you can't push your wheelchair.
Even if you can't wipe your arse with your dominant hand.
Even if you scream at the pain in your shoulder when you cough. When a broken rib didn't make you scream like that upon coughing.

Pics or it didn't happen.

I had really wanted to go and see Neville's Island during it's final week. An organisation that owed me an apology were going to buy me tickets too. Cracking cast: Adrian Edmondson, Neil Morrissey, Robert Webb and Miles Jupp.

Couldn't go. Obviously. Like I said; I haven't left the house since I came home from the hospital. I'll remind you that after breaking a rib I got myself to Westfield the next day. Went to FrightFest about 10 days later, and even managed to cram my broken rib into a bra for that outing.

I was really upset about not being able to go. But "luckily" there's nothing wrong with my shoulder right now.

While 2 A&E departments were collectively as helpful as a shit in a sock, I've had wonderful friends come to my rescue. I especially have to say thanks to Liz & Jo who:

* Arranged for someone to drive my car back to London from Hell.
* Came and rescued me from my local hospital (and gave me a bag of Christmas presents while doing it).
* And Jo went back to the hospital the following day during pharmacy opening hours to get the co-codamol that the "urgent treatment centre" prescribed.

I would literally still be crying in Clacton if it weren't for them.

I often go months without seeing anyone. But my friends have been great these last 9 days. Someone else came by to grate some cheese for me to make one-handed cooking a bit easier. (Lactofree don't sell pre-grated cheese.) Another friend is swinging by tomorrow to throw some rubbish out for me.

Now, if you'll excuse me. I'm going to go and have a bath. It takes me nearly 2 fucking hours to get dressed again afterwards.

Accidents

Until last night I hadn't been in an ambulance since I was 8 years old and I shattered my ankle in school.

I'm pretty adept at dealing with injuries myself. I usually strap up my own fractures, my dislocations usually spontaneously reduce (the thing about joints that dislocate easily is that they pop back in easily too). I'm generally used to pain and injuries without seeking medical help.

But last night I had no choice.

My father was eating dinner and he aspirated a sausage. I slapped him on the back and hurt my shoulder. He coughed up the sausage all on his own while I was talking to the 999 operator. I said "oh, he's coughed up a piece of meat the size of a finger. But I still need that ambulance for my shoulder."

The paramedics were lovely. Well, at first they couldn't give a fuck while I was standing in front of them saying "I've got osteogenesis imperfecta and I think I've broken my shoulder." It eventually transpired that the 999 operator hadn't updated them, even though I'd told her quite clearly what had happened. So they arrived looking for an "81 year old choking victim." (I'd also told the 999 operator clearly that he's 80.) So given that they were looking for someone who couldn't breathe, my shoulder didn't matter at all. But once they ascertained that my father was breathing and I was now the patient; they were lovely and offered me perfect medical care.

The loveliness ended once I got to the hospital.

Well, not the second I arrived at the hospital. For a while I remained in the company of the paramedics because there were no hospital staff around. They hooked me up with more entonox because the one in the van crapped out. Even the paramedic admitted that it wasn't supposed to be making that noise. A friend of mine broke her toe recently and posted a gas & air selfie on Facebook. I decided I might as well join in for something to do while waiting for hospital staff to appear.

Eventually a nurse did show up. She was mean. She didn't actually use any unacceptable language, but from her facial expression and tone of voice you could tell that she thought I was the scum of the earth. She loathed me before I'd even said a word. At first I figured "well, it's Boxing Day. I'd be in a bad mood if I had to work too."

Except she was perfectly convivial to the doctors, the porter, the female paramedic. She gave the male paramedic a flirty wink and a grin. The unsuppressed contempt was for me and me only. Before I'd even said a word.

Obviously, during the handover, the paramedic mentioned that I'd had a dose of oramorph in the ambulance. The fact that I have multiple medical conditions that require morphine should not make a nurse hate a patient. If you're a nurse who doesn't like people who take prescription medications, you're in the wrong job. The drugs were clearly mine, the label explicitly stated that they were prescribed to me, I wasn't illegally abusing drugs. But you know what? Even if I had no painful medical conditions and I was a junkie who had no physical need for strong painkillers: I would still deserve to be treated with politeness by medical staff. Rudeness wouldn't make my shoulder magically better.

She can't even claim "I thought she was just a drug seeker" as a defence for her behaviour seeing as how I'd brought my own fucking drugs with me.

But I suspect she'd have hated me anyway. The painkillers I take were just fuel on her bitter little fire.

Her and the doctor who'd come along both begrudgingly agreed that they should probably take an x-ray to be on the safe side. It was quite clear that their assumption was that I had no injuries whatsoever, and they were just humouring me before kicking me out. I guess they were thinking "we'd better give her a zap of radiation so she can't write a complaint that we didn't even bother to x-ray her." Rather than the professional "lets order this essential medical test and carefully scrutinise the results, ordering more tests if it doesn't give us a clear answer as to the nature of her injury."

I feel I need to make clear at this point: I haven't named the hospital publicly, and I will not be doing so until the complaint has been processed. If you happen to know the name of the hospital I went to from my "friends only" Facebook post, please keep it quiet until the complaint has been followed through. I trusted you to share that information with you. Please respect that trust by not making the information public.

So I went for an x-ray. Like the paramedics, the radiologist was lovely. Well, one of them was lovely, conversational and warm. The other one didn't really say much to me at all, but at least she didn't express pure contempt like the nurse, or an assumption that there was nothing wrong with me, like the doctor did.

They took x-rays from 2 angles. If you've got a clearly displaced break, it's usually pretty obvious from most angles. If you've got a small fracture that doesn't go right through, you have to x-ray from exactly the correct angle in order to be able to see it.

The last time I went to A&E was because I genuinely didn't know if I'd fractured my rib or not. They took one x-ray and declared my rib to be fine. The next day I found out that there definitely was a fracture there when I bent down while gardening and that little fracture went right through and became a proper break. I didn't only feel it snap, I heard it snap too. I packed up my gardening gear, came inside, took some painkillers, watched The Great British Bake Off, then cooked myself some dinner. There was no point going back to hospital. I'd only gone the day before because I wanted an answer. Once the little fracture had turned into a clear break, I had my answer; no need to go back. They don't do anything for ribs unless it punctures your lung.

Once I crush fractured a couple of vertebrae. At the time the radiologist declared that there was nothing wrong. A decade later my x-rays were looked at by an expert in osteogenesis and he immediately said "you've done something here..."

"I knew it!" I replied.

I could go on, I have loads more examples. But the point I'm trying to make is that doctors often miss fractures on OI bones because our bones really aren't that opaque on x-rays. These experiences aren't exclusive to me; I don't think I know a single person with OI who hasn't had fractures missed that have ultimately turned out to be very real.

Once when I was a pre-schooler I didn't have just a little fracture, I had a proper displaced break go unnoticed by a doctor who just wasn't doing his job. My mum took me back to A&E again the next day because I still wouldn't move my arm: I was treated by a doctor who could be bothered to actually look at an x-ray, and was diagnosed.

The doctor I encountered last night took a quick glance at my x-ray, declared "no fractures. You're lucky. It's just a soft tissue injury. Goodbye."

I can't move my fucking arm at all, but I'm lucky? Even if it transpires that it is "just a soft tissue injury," that doesn't mean it isn't serious. Nasty soft tissue injuries can be more painful than fractures and take longer to heal than fractures. If they heal at all. Soft tissue injuries can require surgery. Soft tissue injuries do not show up on x-rays.

There's a common belief among doctors that there's only one type of injury that people with OI can sustain, and that's fractures. I've even met "experts" in OI who've fallen into that trap. The reality is that OI most famously affects bones. But it also affects tendons, ligaments, blood vessels, skin... In fact it affects every tissue in the human body. While many doctors seem to believe that OI is an immunity against all other injuries; the reality is that OI makes us more vulnerable to tearing tendons, etc.

Oh how I wish I was at home in London right now. The first time I went to my local A&E, the doctor I met was meticulous. The radiologist said he couldn't see anything wrong with my x-ray. But when the doctor reviewed it she noticed a random speck of bone floating around in my foot. It was about a millimetre long and about the width of a hair. But she studied and studied my x-ray until she spotted it. She couldn't explain it, that took an orthopod. But she noticed it and realised it might be relevant.

It turned out that I'd torn a tendon out of the bone. The tendon that's responsible for rotating your foot inwards like the movement involved in moving your foot from the accelerator to the brake while driving. That tiny speck of bone was a little chip of bone that had been pulled off when the tendon came out.

I wish I'd encountered a doctor with her diligence last night.

Usually when I tell people about that injury, they start wincing. But, actually, while painful, I could still walk on it. Well, the small amount I can walk anyway. In fact I could still move it for the first 2 months after the pain started until my foot eventually decided "nope, not moving any more." It was my inability to move it that made me finally give in and go to the hospital, not pain. Sure, it was painful, but within the realms of my pain tolerance. It wasn't pain preventing my foot from moving, it just wouldn't budge.

This shoulder? So not within my pain tolerance. And the reason I can't move it is because of pain. I can break a rib one evening and then lift my wheelchair in and out of the boot of my car the following day. For me to be unable to move something at all because of pain... Well, that hasn't happened since I snapped my humerus aged 9.

After I'd been kicked out of hospital, I again encountered human decency. When I got in the cab I failed at my first attempt to do up my seatbelt. My left hand is dominant and I was trying to do up a seatbelt on my left hand side with my right, non-dominant hand. (Because if I sat in the back seat with a right hand side fastener, that would have meant the belt going over my left shoulder.) He offered to help me, but I managed it on the second try.

I involuntarily gasped with every bump in the road we went over. He sounded like he felt so guilty for inflicting pain on me. Unlike in the ambulance, I didn't have entonox to suck on (well, until it gave up towards the end of the ambulance ride, anyway). I wound up feeling sorry for him because he knew he was causing me pain, felt guilty about it, but couldn't help it.

And now there's my poor cat. She keeps trying to affectionately head bump my arm. I can't explain to her "please express affection towards any part of my body except that arm." So I have to just keep pushing her away and she looks ever so upset. She could give @mysadcat a run for his money.

As for my dad and his sausage? That's twice I've visited him in a row where he's inhaled food. If me refusing to come visit until he sees a doctor to discuss his aspiration issues is what it takes to make him see a doctor about his aspiration issues; then that's what I have to do before he kills himself on a KitKat. If I don't threaten such measures, he'll just carry on like this until his death certificate reads "cause of death: Steak and kidney pie."

But for now I'm dealing with the worst injury I've had in more than 25 years, and have had no medical treatment for it whatsoever.

♫...What's in your head, in your head?...♫

Well... my jaw pain, allegedly.

Getting told that your physical condition is psychosomatic is disturbingly common. In the past it's happened to me but only over a period of a couple of months, and it wasn't a serious condition anyway.

In 2003 or 04 (I remember it was when I lived in Golders Green, which was from June '03 to June '04) I finally told my GP that I had trouble making out what people were saying, especially if there was any background noise. It had been a problem for about a decade but I'd not bothered to see anyone about it. As hearing loss caused by a fractured stapes is common in osteogenesis imperfecta my GP sent me to the Royal National Throat, Nose and Ear Hospital to get my hearing looked out.

When my hearing test came back fine, the registrar told me that I was mad and purely imagining that I couldn't hear. He referred me to hearing therapy to "teach [me] how to hear". The hearing therapist was horrified at how I'd been spoken to. She also gave me an actual diagnosis which explained all my hearing issues: Auditory Processing Disorder. Yes, it's a brain condition rather than an ear condition; but there's nothing imagined or "mad" about it. It's essentially 'sound dyslexia'.

I've had another case where I was told that I didn't have the medical condition I do actually have, but instead of being told I was imagining it; I was told I had a different medical condition. For years I was told that I had nothing wrong with my sinuses, that I was having migraines instead. After a couple of years of Idiot Registrar not being able to spot inflamed sinuses when they literally sneezed on him; he finally deigned to look at a CT scan of them. "Oh, there is something wrong with your sinuses after all" was his comment upon re-entering the room.

Rather ironically I now do have migraines caused by my sinus problems going untreated for so long. The lack of treatment damaged the nerves in my sinuses and you have nerves that run through your nose and into your brain. The damage to these nerves triggers migraines in me. So thanks for that little gift, Idiot Registrar.

My jaw became an issue about 3 years ago. The muscles started spasming and it subluxed pretty regularly. I would often wish someone would stand on the right hand side of my face to keep my jaw where it was supposed to be. One day I remember @BendyGirl tweeting that she'd just stood on a friend's pelvis to reduce it; so I responded along the lines of "great! Now get down to London and stand on my face to keep my jaw in its socket."

Over the years my jaw problems have progressed. I reached a crunch point in the first week of February this year: My jaw hurt so much that I spent the whole week so bombed on morphine that I didn't even notice when I re-fractured the metatarsal I'd originally fractured 6 weeks earlier. And my jaw was still more painful than I could bear.

So I went to see my GP and he referred me to maxillofacial. The referral was rejected and my GP was told to send me to the Facial Pain Clinic at the Eastman. He did.

So I went to the Eastman on Wednesday expecting an examination of my jaw, some x-rays and general usual hospital appointmentness.

My appointment was at 9:30, which was about when I arrived at the building. The clinic I was going to was in an area marked "2" so logically I went to the second floor. Area 2 isn't on the second floor. Then there was the orderly jamming the lift door open with a laundry cart with me inside. I mean I was inside the lift, not the laundry cart. By the time I reached clinic reception I was 18 minutes late. They refused to see me for "being half an hour late". Which is odd because I hadn't realised that we now had 40 hour days.¹

I go to a lot of hospital appointments. Wednesday was my second appt in the space of 6 days. I think this is my first appointment ever that was running less than half an hour behind schedule which was why I was quite laid back about not arriving at the hospital bang on the appointment time. Smegging typical that the first time I encounter a hospital running on time reception is staffed by punctuality obsessives. But then I guess they would be the people who'd get a clinic on schedule.

They wanted me to go home and come back in September. Of course, I now know that it wouldn't have made a damn bit of difference, but at the time I was reduced to begging.

The doctor agreed to see me but I was then subjected to more tutting and eye-rolling from reception because I hadn't filled in my pre-appointment questionnaire, having banked on doing that in the waiting room.

I will say one thing for the clinic reception/waiting area: It's got aircon. Presumably because they also handle a lot of private patients. I guess if there's going to be a silver lining to the recent NHS Act it might be that with 49% of beds going to private patients we start to see hospitals that aren't all ovens.

The appointment itself lasted an hour which is unusual. You'd think that would be an example of excellent medical care, wouldn't you? Except it was 58 minutes of asking me about depression and 2 minutes of examining my face. Which really tells you what the clinic is all about.

Some gems from the consultation included his incredulity that the pain clinic have never sent me for counselling. Like talking about my feelings is going to stop my sinuses from hurting or cure my osteogenesis. I consider myself genuinely blessed to go to one of the few pain clinics where they don't go in for the bullcrap touchy feely stuff and just prescribe painkillers.

When talking about my sinuses he asked the question "and did they actually find anything wrong with them?" He was obviously working on the assumption that I don't have any real physical conditions and I just have conversion disorder. I'm surprised he didn't question my OI and claim I'm making my scleras blue by being miserable.

I should've foreseen what my diagnosis was going to be when I explained that because of my hypermobile hands I do things like unscrew bottle lids with my teeth and he was totally unperturbed. People who care about my oral bone health usually go batcrap over that; even though my lack of useful hands make it non-optional.

He clearly didn't believe me when I explained about the subluxing jaw. He kept saying "but you've never had your mouth get stuck open and been unable to close it..." He seemed incapable of understanding that hypermobile joints dislocate easily, but they go back in pretty easily too. During the incredibly brief physical examination he exclaimed that the distance I can open my mouth is "very good." I'd bet my cat's whiskers that before my jaw became problematic I could open it even further. Despite his acknowledgement of the existence of hypermobility, he wouldn't accept that I had it in my jaw and clearly didn't believe my jaw had ever come out of its socket.

Notably he didn't ask me if I'm on bisphosphonates; a common treatment for osteogenesis. An important question given that it could cause osteonecrosis of the jaw. (I'm not, so that's not my problem.)

Unsurprisingly my diagnosis is that my jaw pain is psychosomatic. The cure? Group therapy. Really. They don't just have psychologists on hand at the facial pain clinic though; they even have shrinks ready to dole out psychiatric meds rather than accepting that sometimes people have something wrong with their jaw.

Without any medical training myself I presume my knackered joint is causing my muscles to spasm in the same way that my weak hand joints cause muscle spasms when using a pen. Yes there is a stress element to it: Tense muscles get worse when you're more tightly wound generally; just ask anyone with cerebral palsy. But does that mean CP is psychosomatic? Of course not.

But what I am sure isn't psychosomatic is the crunching noise my jaw makes when I yawn or chew. It sounds and feels just like the crunching noise my right ankle often makes: A joint that's had its worn-outness confirmed by MRI.

So now I know why maxillofacial rejected the referral: They obviously saw citalopram and amytriptiline on my drugs list and assumed there's nothing physically wrong with me; I'm just nuts. Despite the bone disease...

What can I do now? Well there's not much really I can do except go along to therapy and talk about my fucking feelings even though the flapping up and down will make my jaw worse, if anything.

Other suggestions for treatment include "a relaxing activity with a physical element like yoga or gardening." Logic fell over and died at this point: I already garden and my jaw fucking hurts.

I'm also supposed to get some exercise. You know; like the miles I push and the swimming I do. I may have been priced out of going to the gym but I don't spend every moment of the day gawping open-mouthed at the telly. That noise you can hear? It's logic turning in its grave.

I love the NHS. As I've explained before a really important thing is giving feedback because that's how you help something you love function better. So hear this NHS:

You could save a fuckton of money if you stopped denying people medical help for years while they get worse claiming that the patient is "just depressed". It's the worsening which is where you lose the money. An assumption of conversion disorder should only be reached once you've ruled out all logical physical possibilities. It should never be a first stop before you've even carried out an examination. I know at least 10 people, probably more if I asked around a bit, who've at some point been diagnosed with conversion. One does actually have CD that fits, the rest were eventually given a physical diagnosis.

When I got home I was emotionally shattered from a shit appointment and physically shattered from driving back from visiting my dad in Colchester hospital the night before. I immediately crawled into bed. Thank goodness for cats: Betty decided to take my mind off things by lifting her tail up, reversing in and then sitting down on the pillow with her anus about 3cms from my nose. Finally something to laugh at on a miserable morning.


_______________________________________________________

¹ Thanks to Robin for the maths help with that one. @Uppo1963, @latentexistence, @PatParslow, and @indigojo_uk all answered my question also; but Robin got there first.

Hear me roar!

I am angry. I am really fucking angry. I don't usually get angry because I'm quite lazy and anger takes a lot of effort. I usually just roll my eyes or bang my head on my desk. They're not very labour intensive. Especially if you don't repeatedly bang your head against the desk: Just the once, leave your head resting against the desk and you're in the perfect position for a nap. See? Lazy.

I am angry with NHS wastefulness. Perhaps I should go join the Taxpayer's Alliance? Eh, nice idea, but I don't want to stop all benefits ever and force disabled people into workhouses.

My anger started about a week ago. In 2004 I was referred to the surgical appliances dept at the Royal Free for a splint for my wrist. There was a smattering of wastefulness about my referral: GPs are not considered intelligent enough to refer patients directly to SA, my GP had to refer me to orthopaedics for them to refer me to get a splint. Which seems like a waste of my time and NHS money for me to have to see an orthopod I didn't need to see. But it was a one-off ortho appt, they referred me downstairs to surgical appliances and discharged me from ortho.

Last year I saw an orthopod at UCH about my broken foot. As The Boss promised during the appointment from hell two months later I was indeed referred to orthotics for inserts into my shoes.

"Surgical appliances" and "orthotics" are two different names for exactly the same department. One hospital uses one name, the other uses the other. So, yep, I'm a patient at exactly the same department at two different hospitals. Common sense would indicate that I should perhaps get my details sent from one hospital to the other so I can have all my supporting needs met in one place: Saving my time, and most crucially, taking up only 50% of the orthotics appointment slots therefore costing the NHS only 50% of the current cost. So last week I tried to arrange for that to happen.

Of course that would be far too sensible. I enquired about the possibility and was told that both hospitals have a policy of not issuing orthotics unless they've been prescribed by an orthopod from that hospital. So thanks to stupid policies I need to have twice as many appointments as I would need if the stupid policies didn't exist, costing the NHS twice as much.

The word is "fail".

Then I started reading about the ten23 campaign. A sort of great idea. I say "sort of" because I can't help but feel that the campaign is somewhat misguided. They are aiming their "stop being so stupid" at Boots when elsewhere on the site they have this fact:

In the UK, the NHS spends around £4million every year on homeopathy and the British government supports four NHS Homeopathic Hospitals - Bristol, Glasgow, Liverpool and London. What's more over 400 GPs in the UK regularly refer patients to homeopathic clinics. With homeopathy having been conclusively proven to work no better than placebo, there is no place for it in the National Health System, and no reason to support it with money that would otherwise be used to support real, proven treatments with genuine efficacy.

From http://www.1023.org.uk/why-you-cant-trust-homeopathy.php

So, yeah, can't help but feeling that the campaign would be more worthwhile if it was aimed at stopping the NHS wasting money on homoeopathy rather than stopping Boots from selling homoeopathic "remedies". Because I care how the NHS spend their money, how A. N. Other spends his or her money down the chemists really doesn't bother me.

And then today I read this article from The Independent: The ex-gay files: The bizarre world of gay-to-straight conversion (yeah I know it was published eight days ago, I'm a bit slow).

It transpires during the sessions that she gets most of her clients through an NHS GPs' surgery near her home. She says they refer people to her for treatment for their homosexuality.

Yep, NHS money is being wasted on "treating" homosexuality, even though -- as the article recognizes -- homosexuality was removed from the DSM 36 years ago.

The NHS will happily spend twice as much money on orthotics appointments than is needed, they will happily spend millions on treatments proven to not work, they will pay for "treatments" proven to cause more harm than good, but what they won't pay for is a kidney cancer drug proven to extend life.

The NHS is a hot political topic at the moment, so why aren't the political parties all promising to stop pissing NHS money down the drain?

So I'm busy being angry. And having to go to more orthotics appointments than I need to. Grr.

Edit 21/02/10: The end to NHS homeopathy may be in sight!

Extra Crippy

You know it's gonna be a strange day when you've been patronised by 9:15 a.m. I'm not usually even awake by 9:15 a.m.

I hurt my foot four months ago. I can't pinpoint exactly when because I was painkillered up to the gills because of the post-op pain in my face. All I noticed was that it started hurting some time during the nine days my mum was in hospital between her heart attack and her death.

The delay in receiving medical attention for it was slightly my fault. I've got osteogenesis imperfecta, so if I went to see a doctor every time something ached or hurt I'd never leave my doctor's. But after two months of pain I figured it was probably worth mentioning the next time I saw my GP.

He immediately referred me to orthopaedics, but I didn't get an appointment for another two months. In the interim period I wound up in A&E one night when I found I could no longer move my foot. All they could really say was "you need to see an orthopod," but my A&E adventure in the snow did nothing to bring the appointment date forward.

So that brought me to today. I arrived at the clinic reception and the receptionist, who had been talking at a normal speed until she clocked me, s-t-a-r-t-e-d t-a-l-k-i-n-g r-e-a-l-l-y s-l-o-w-l-y. I spent the next half an hour compulsively checking Twitter on my phone and wishing that I'd ducked into Euston on my way there to pick up a copy of Metro. A hospital waiting room without any crap out of date magazines? Outrageous! And very very boring.

The first doctor I saw did not inspire me with confidence. He pronounced it "osteogenica imperfecta." Twice. Did I mention that he's supposed to be a bone specialist?

Establishing that I'm more knowledgeable and qualified than the doctor is not good.

He then proceeded to demonstrate his ignorance further by attempting to ask me about how I predominantly get around.

"In the average day how much time do you spend mobile and how much time do you spend in your wheelchair?"

"I'm actually very mobile in my wheelchair. I can push for miles."

"I mean, how much time do you spend mobilising without your wheelchair?"

"I don't do much mobilising without my wheelchair. I spend most of my time without it either sitting on the sofa or on my desk chair."

"Okay, in the average day you spend eight hours sleep. How do you split the rest of your time between immobilised in your chair, and mobilised walking?"

This circular conversation went round for a while until I let it slip that my flat isn't wheelchair accessible. I did remind him that most of my time awake and in my flat is spent either sat on the sofa or the chair, but he didn't think that laying on the sofa moving nothing but your thumb to operate the remote control is immobile, because at least it's not in a wheelchair.

He then decided to examine my foot. This was where he demonstrated that there is potentially a proper orthopod in there somewhere - he poked my foot till I screamed. I don't know why x-rays and the words "it hurts there," are never enough for an orthopod; they have to prod until you yelp.

He went to "look at my x-rays" leaving me alone in a room for a good 10 minutes with someone else's medical notes on the side. And people are concerned that computerised notes are going to lead to confidentiality breaches (I didn't look at the notes, I'm not an arsehole).

He came back with The Boss, they'd both looked at my x-rays together. The first thing The Boss asked me to do was stand up, so he could check out my flat-footedness. He then asked the first doctor "did you check that?"

"No."

"You should have done."

Then The Boss turned to me "have you always been that flat-footed?"

Which of course I have. He then also proceeded to jab the bit that I said hurt with his thumb and gave me a diagnosis; I've ripped the tendon out of the end of a bone in my foot, and yanked a lump of bone off with it. It's actually an injury I've had before, only last time it was a finger where my hand collided with the foot of a breaststroker in the neighbouring lane in the pool.

The Boss decided that I need an Aircast boot to support my foot while walking for the next few months. He wants me to come back in two months (presumably so he can poke it again) and then for me to have orthotics in my shoes to correct my super flat-footedness.

So then The Boss left leaving me with first doctor again. He walked with me out to reception, handed me a piece of paper, and told me to take it to the orthotics department. I looked at the piece of paper and asked "are you sure this is the right paper to take orthotics?"

The paper clearly said "Patients: hand this paper into reception before you leave." It also had a "next appointment" box in which the doctor had hand written "two months". It said nothing about an Aircast boot, which I figured was kinda what orthotics needed to know.

"Yes, take that down to orthotics."

"Are you sure this is the right paper to take orthotics?"

"Yes, take this down orthotics reception and they'll sort you out."

"Are you sure this is the right paper to take to orthotics?"

"Yes."

"Okay then."

Then the receptionist put on her slow voice and called me over. She handed me a paper and told me to take that to orthotics.

"But he [pointing] told me to take this [handing over paper] down to orthotics."

"No, you're supposed to hand that in here."

"That's what I thought."

At which point First Doctor came over and started getting all defensive about the fact that he was wrong. During his defensiveness I pointed out to the receptionist that someone had spilt sugar all over the counter. For some reason this observation convinced her that I was intelligent enough to be spoken to at a normal speed.

Anyway, the receptionist sorted me out with right bits of paper, and pointed me in the direction of orthotics (because the doctor didn't know where it was). So I headed down into the bowels of the building. Why is it that orthotics departments are always underground? They gave me the splint I'd been prescribed and sent me back up to the clinic to get the splint "fitted" by a nurse.

The nurse was actually really nice and friendly, she showed me how to put it on properly and inflate it. I tried standing up in it and said "erm, it's supposed to support my flat-footedness, but I can still feel my foot rolling over inside it." I took it off to show her how the boot is designed for either foot, so it's got no arch support.

She immediately understood the problem and said "I'll get the doctor."

So who did she bring back? You've guessed it, First Doctor. "You need to try it for a couple of months to see if it helps."

"I don't need to try it for a couple of months, because just standing for a few seconds I can tell that it's not providing the support it needs to." Another circular conversation ensued, with him getting progressively more and more, erm, I think "assertive" is the most appropriate word. The more wound up he got, the quieter and calmer I spoke. I think most patients would have been intimidated into leaving with a piece of inadequate equipment, but that's just not me.

Eventually I finally got through to him when I said "have you ever tried on a pair of shoes in a shop and not bought them because you could tell just from standing in them for a few seconds that they were way too big?" So he went to phone orthotics to ask for advice. He was gone for ages leaving me with just Twitter on my phone for company. Eventually he came back with a sheet of sticky backed padding to make an arch support for the inside of the boot. I thought I'd achieved success until:

I tried walking in it.

Thankfully there was a desk within reach for me to grab hold of so I didn't go splat on the floor. "I'm gonna need a crutch or something."

More drama. I was sent back and forth three times between the clinic and the basement before someone finally located a midget sized crutch in the hydrotherapy pool changing room. It's unbelievable, kids break things and need to be given crutches all the time, so how can it be so hard to find some kiddie-sized crutches in a fucking hospital?

During one of my trips down to the basement in my crutch-hunt I asked the (American) orthotist if there was a toilet nearby.

"There's a handicapped bathroom just there on the right. Erm, I mean left."

1) Handicapped?

2) An orthotist that can't tell left from right is a bit worrying. You could end up with a completely incorrect body part splinted.

Anyway, the crutch thing. Of course in an ideal world I wouldn't need a crutch because my flat would be wheelchair accessible so I could use my chair indoors. But the wait for an accessible property was years anyway, and that wait is gonna be even longer now that disabled servicemen and women will take priority for accessible housing over all other disabled people.

So anyway, I finally had my boot with a rigged up arch support and a crutch to lean on. I got to go home!

As I was pushing past Euston station on my way back to the flat, I passed a group of four police officers talking to a group of three people. To carry on pushing I needed to cross the road by one of the service entrances into the station, but the police had blocked the dropped kerb with their car.

"Excuse me, is this your car?" (A bit of a stupid question, but it's what fell out of my mouth.) "Can you move it away from the dropped kerb so I can cross please?"

They didn't kill me, so it's all good.

When I got home I discovered that when I was in the hospital asking for a crutch that my flat had become much bigger in my imagination than it actually is. I got in, leant the thing against the sofa, and haven't touched it since. My flat is so small that wherever I am I can always reach either a wall or a piece of furniture to hang on to. So all that travelling back and forwards hunting for a Lisy sized crutch was for nothing.

This thing is a bitch to walk in. I can only walk really slowly anyway, but this has reduced me to about one third of my normal walking speed. Though I seem to have cracked it, the fastest, safest, and easiest way to walk in this thing is sideways like a crab.

Now excuse me while I scuttle crustacean stylee to the kitchen to make a cup of tea.

Update Friday 6 pm: I've given up on the boot. It was pressing/rubbing on my heel, and causing that to hurt more than the pain at the injury site!

NaBloPoMo 6: The Crip Eating Monster

Today I ate crips. No, really.

Despite feeling like death not even warmed up, I dragged myself down to the Royal National Throat Nose and Ear Hospital to see the surgeon that's going to be operating on my nose and sinuses.

The majority of staff at the hospital couldn't tell their arses from their elbows if they were clearly labelled. Fortunately I do have some faith in the surgeon, even if I'm concerned about whether or not the other hospital staff will be able to get me to the theatre on time. Or at all. He laughed, and then apologised when I told him about my pre-assessment telephone interview.

"What is your exercise tolerance?"

"My what?"

"Your exercise tolerance. Can you walk long distances?"

"No. I'm a wheelchair user. But I can push long distances."

Then about 10 mins later:

"What drugs are you on?"

"About 15 kinds. Where do you want me to start?"

"With the most important."

"They're all important. I'll start with the ones relevant to the condition I'm being operated on for."

[4 drugs later]

Her: "OK, just one more."

Me: "Well, I've still got about 10 different ones left."

"What do you take for your muscles?"

"What?"

"What do you take for your mobility."

"Erm... nothing..."

*headdesk*

She had to hang up, check with a supervisor if she needed me to carry on reading the rest of my drugs list, and call back. It just got better.

"You need an adult to bring you in."

"Why? I know I'll need an adult to take me home because of the anaesthetic, but why to bring me in?"

"It is because you are a wheelchair user."

"What? I'm a big grown up 29 year old, I can get myself to the hospital."

"You live alone!?!?!?"

So my surgeon sent me up to pre-assessment in person to redo the interview on the basis that my info was written down by an idiot.

I'm still all viral and achy and tired and bleurgh. By the time I got home I just wanted to sleep. But I was starving and too exhausted and utterly spoonless to cook, so I went to grab some grub from the café round the corner. I was so hungry that I couldn't even face the 5 minute wait for a jacket potato to be delivered to my table, so I turned to the crisps rack behind me...

When I noticed they were selling Crips

I had to.

There are some fantastic quotes on their site... "Crips are everywhere!" being possibly my personal favourite.

Don't understand the whole animal advertising thing though. My Sea Salt & Balsamic Vinegar Crips had a picture of 2 dogs on the packet. Neither of them were in a doggie wheelchair. False advertising, that's what it is. I want to know what's inside my packet of fake crisps from looking at the packet. Yes, Crips should be advertised by real crips.

NaBloPoMo 5

Still feeling a bit foggy, but my virus appears to be subsiding slightly.

On Sunday fearing I may have tonsillitis I dragged myself to the NHS Walk-in Centre at Charing Cross Hospital, where they've got a Walk-in Centre, a Minor Injuries Unit and an A&E in one. You register at reception, get seen by a triage nurse, and they decide whether or not you should be seen as a walk-in patient, a minor injuries patient or an A&E patient.

Despite only having suspected tonsillitis the triage nurse put me down as an A&E patient. I'm assuming that was because of the wheelchair. I wanted to hit my head against things - there's an A&E dept within walking distance of my flat. If I wanted to go to A&E over a sore throat I'd have gone there, instead of dragging myself halfway across London, getting lost in Hammersmith due to the hospital not being signposted and having to resort to calling my mother in Clacton to get her to look up a map online and give me directions to the hospital.

Grrr.

So, anyway, I was seen within a matter of minutes. I wish my waits in A&E had been that short during my childhood when I could've been eligible for some frequent visitor reward scheme on account of breaking my arms all the damn time.

I was seen by a nurse who only cared about why I used a wheelchair.

"My throat hurts and my nose is bleeding about 5 times a day. I've got chronic sinusitis and am on the waiting list for surgery."

"So, why do you use a wheelchair?"

"Osteogenesis Imperfecta. But, sinusitis! Nose bleeds!"

"How do you spell that?"

"O-S-T-E-O-G-E-N-E-S-I-S I-M-P-E-R-F-E-C-T-A. But, sinusitis! Nose bleeds!"

"Is that like a spinal thing?"

"Literally translated from Latin it means 'imperfect bone formation'. Sinusitis! Nose bleeds!"

"Have you had it long?"

"What? The sinusitis or the OI?"

"OI."

"Erm... since birth? Sinusitis! Nose bleeds!"

Meeting a medical professional more interested in OI than what I actually went in for is nothing new. Meeting an A&E nurse who's never met someone with OI is more shocking. OI is pretty rare, but OIers do make up a fair amount of the traffic that goes through A&E depts, what with the frequently breaking bones thing. I spent so much time in X-ray as a child that two of the first words I learned to read were "danger" and "radiation"!

After all that, he finally looked down my throat, saw no pus, decided I just had a virus and sent me home with the instruction to drink lots of hot drinks.

Like I need to be told to drink copious amounts of tea.

P.S. Yay! Obama! Roll on January 20th.

Yet more hospital appointments continue to take up vast amounts of time in The World of Lisy Babe.

While the staff at the Royal Throat, Nose and Ear hospital don't claim to have time travelling skills, nor do they expect me to demonstrate some, they still know how to confuse me.

I've had problems with my sinuses for most of my life. But in the past year they've actually become quite an impairment as I'm spending around 2 days a fortnight stuck in bed with the ability to do nothing except swallow more painkillers. Yesterday I finally got the chance to see an ENT specialist about this.

Upon arriving at the hospital, I was asked if I'd used Patient Transport Services to get there.

"No, I pushed here." I thought this was an obvious answer. If I'd said "I walked here," he'd have looked at me like I was A Mental (because apparently wheelchair users aren't allowed to use common parlance).

"Yes, but did you use hospital transport?"

I had no idea that patient transport vehicles were now fitted with treadmill type things so it would be possible for me to simultaneously push all the way there and catch a ride in an ambulance.

I do love the belief held by most members of NHS staff that it's not possible for crips to make their own way to hospital. Obviously, for some it's true. But when I had an endoscopy in March they sent an ambulance to pick me up (without even consulting me to find out if I needed or wanted one). I live a 10 minute walk/push/whatever from the hospital. There is no way in the world I'm going to be up and ready to leave the house an extra 2 hours before I actually need to leave just because someones made an assumption about my abilities. Thank you very much, I'll spend those 2 hours catching extra kip. And to add insult to insult, the patient transport people kept calling me "Mrs Lisa Egan." Now that I seriously considered making a complaint about. Mrs indeed.

Anyway, after that rather odd exchange with the receptionist, they sent me for a hearing test. I'd been complaining of sinus pain, not hearing loss. But the NHS does like to waste it's limited budget (like by employing people who can read the future) so I dutifully headed towards the hearing test dept and played along by pushing a button every time I heard a beep.

And, why? "You've had hearing problems in the past." Said a nurse who'd clearly only skim read my notes. Had he bothered to read properly he'd have seen that, actually, no. There's nothing wrong with my hearing. I have Auditory Processing Disorder. Telling me I have hearing problems is like telling a dyslexic that they're visually impaired. Idiot.

Fortunately the doctor I finally saw had a slightly higher IQ than most of the staff at the hospital. Though he did say "I see from your notes that you have Osteogenesis Imperfecta. Is that why you use a wheelchair?"

I was tempted to reply "No, my sinus pain is just so bad it's fucked up my knees." (But it still doesn't beat an anaesthetist asking Loudgirl "if she'd always had dwarfism?")

After sticking several things up my nose he informed me that I have Rhinosinusitis to add to my ever expanding list of diagnoses. This apparently does not mean that my sinuses have been invaded by Rhinos (though it often feels like I have a wee one growing in there and trying to burst out. I keep waiting for my face to explode in a similar fashion to John Hurt's stomach). Nor does it mean I have sinusitis of rhino-like proportions (though, again, feels like it). I think it simply means that whoever hybridised "rhinitis" and "sinusitis" got bored of the letter "I" and decided to throw in an "O" for some slightly variable vowel sounds. It's basically a fancy and mammalian sounding word for "chronic sinus inflammation." Which I could've told him I had on my way into the clinic.

Before departing from the hospital, I was sent to pick up a list of things to squirt up my nose to try and ease my suffering, and to have a blood test to see if there were any obvious causes for my sinuses to be so enraged.

Upon arrival at the blood test room, the phlebotomist asked me "Are you a difficult one?" As I sat there with my rear wheels wedged in the door frame I replied:

"Well, I can't even fit through your door for starters." Despite the popularity of the medical model of disability in certain quarters, apparently we wheelies don't need to be able to make our way around hospitals.

Anyway, I must go. The baby rhino in my sinuses is trying to make another break for it I think.

Just because the appointment bookers in UCH's Maxillo Facial Unit can travel 3 days forward in time to know that I was going to fail to attend an appointment, they seem to think I have the power of time travel too.

Though, I wasn't planning on missing the appointment. But, who knows, maybe had the sound of the postman at 8am on June 19th (delivering a letter telling me I'd failed to attend an appointment 3 hours into the future) not roused me enough to get out of bed, I would have missed the appointment. So, it's possible that their on-staff mystics are right.

I was a little perplexed to receive a letter telling me that on the day of my operation I had to be on ward T14 at 7:30am. Now, anyone that knows me knows that asking me to be somewhere at 7:30am is asking a lot. Hell, most days I'm not even out of my pyjamas by 7:30pm. But the time they expected me to be there wasn't the aspect of the letter that left me befuddled.

What was confusing was the paragraph following the time they expected me to be there. The letter asked me "to call the ward between 9am and 5pm on the day of arrival to check there is a bed available for you."

So, I'm supposed to go an hour an and a half forward in time to call the ward to check that an emergency admission hasn't been dumped in my bed, before showing up?

I wish while I was in there, they'd taught me how to do that. Time travel would be fun. I'd never have to worry about oversleeping again. My alarm clock goes off, I want to roll over and go back to sleep for a few more hours? No problem. Just go back 2 or three hours and get that bonus kip. Lather, rinse and repeat as needed.

I'm incredibly jealous of that girl from Out of this World. Always have been. I wish my Dad was an alien (though, sometimes I think he might be. He's not allowed to eat grapefruit because it interacts negatively with one of the medications he's on. Part of his birthday present from me this year was some grapefruit shower gel. He asked my mother if he would be OK using it. I now think my Dad has a policy of washing from the inside) and I'd inherited from him the power to freeze time. Just how cool would that be? You'd never need to run late again! I think all punctually challenged people like me should be awarded that gift.

Actually, I think I should have the power to freeze time awarded to me as a reasonable adjustment under the DDA. It takes me longer to get anywhere in London than it takes non-disabled people (or disabled people whose impairment doesn't affect their ability to use stairs/escalators) because I can't get on the tube. This means that to get somewhere at the same time as non-crips, I have to get up earlier. Meaning I'm deprived of sleep. If I could freeze time with a clap of the hands, all would be equal in this animal farm we call London.

On the subject of being deprived of sleep, of course on that morning I had to be at UCH, I didn't bother to go to bed the night before. I was being given a general anaesthetic, it's not like I didn't have an opportunity to sleep during that day.

Or so I thought.

Many people wake up from a general rather dopey and spend the rest of the day sleeping, but, I've always woken up and immediately taken on behaviour resembling that of the Energiser Bunny. This was my first general since the age of 9, and I know the effects are often different on adults than they are on children. I was fully planning on sleeping like my mother does after an operation.

My mother is the woman who had her only child, by cesarean, under general anaesthetic. Instead of waking up and being overjoyed by the sight of her newborn bouncing baby girl, and being so excited by parenthood that she just couldn't get back to sleep; she took one look at me, said "Oh," rolled over and went back to the world of dreams. What a welcome into this world I got. "Oh." I suppose at least in her bleary state she didn't start calling me "Peter" which was going to be my name had I had a winky.

So, fully expecting to have turned into my mother, I was planning on catching up on some kip. I was so sure I'd be out for the count that I didn't even bother to pay the exorbitant fee to have the TV by my bed turned on.

Instead of course I woke up insanely hyper, with a major case of verbal diarrhoea (quite impressive given how swollen my mouth was having just had a bone saw in it). Much to the annoyance of the nurse overseeing the recovery room. Eventually she told me to lay down and shut up. You can see why with a bedside manner like that she opted to work with patients who are mostly unconscious.

The closest I came that day to proper rest was when I decided to change from blood stained hospital gown into my own pyjamas. Despite being rather squeamish, I was OK with the sight of dried blood on my surgical attire. I was even fine with the Lisa-juice covered blanket I woke up wrapped in. But, still, nighties aren't very me, I wanted my proper jammie bottoms on, so I decided to go in the toilet and get changed. Drip and all.

Changing from something with sleeves, into something else with sleeves, while you've got a drip in your hand is rather challenging. Still, I was confident I could manage it without having to ask a nurse to help me with all the tubes. As Julia Roberts once said "Big mistake. Big. Huge." Taking the drip down off it's stand to get it through various sleeves meant that my blood started flowing up the drip tube where gravity was no longer pushing the saline in the right direction. One notice of "Ooo, my blood's flowing in a direction it's not supposed to," had me laying on the floor, attempting to preserve what little consciousness I had left.

Actually, I wish I could go back in time and rethink that decision. How embarrassing.

Carry On... Hospital Managers

Or, why I ♥ the NHS.

On one of my thighs right now, I have resting a letter inviting me to attend a hosptial appointment this morning at 11am. Obviously, this appointment hasn't happened yet, what with 11am still being an hour and a quarter in the future.

On the other thigh, I have balanced a letter, posted 3 days ago (on Jun 16th), claiming I failed to attend my appointment on June 19th (later today, not happened yet, stick with the program).

Honest. I couldn't make this stuff up.