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.

♫..."But don't look back in anger" I heard you say...♫

2013: What a piece of shit year that was. If I was of a superstitious inclination I'd postulate that with a "13" in the name, it was bound to be doomed. But I'm not; it was just a shit year. I mean more shit than usual that is: Life has been shit for me for a very long time.

The year started with what I thought was a brilliant idea. I was in the bath one night and I had an idea for a short horror film. The idea was accompanied by something one of my lecturers said during my MA that "the pulp is political" and it made a horror film about the cuts seem even more sensible.

To be honest, I expected daylight to come the following morning and to realise what a daft idea I'd had the night before. Instead, more ideas came. Before I knew it I had all the scenes plotted out in my head and much of the dialogue too. So I decided to type it up and ask a few producer friends if they thought it was viable.

At one point it looked like I had a producer on board and all systems were go. I got in touch with a few actors who I thought might be into it. Liz was especially amazing; she put me in touch with so many people who could be involved either in front of or behind the camera.

It really looked like it might happen. Like my daft idea might come off. I was struggling a bit under the stress, but nothing too bad.

Then the project lost a producer. I don't blame them at all; I totally understand a need to pay the rent over and above a not-for-profit, anti-cuts film. I started looking for a new producer...

... And that was when I really went mental. I can quite honestly say that I have never been so close to having a full-blown breakdown. I questioned the point of my existence when I was too useless to even be able to find a film producer on at least an hourly basis.

I also hated myself for not being able to produce it myself. I don't have the skills required or the sanity to be able to do it; and that was another thing I regularly berated myself for being so useless about.

So many people had offered their skills or given their time, and I couldn't pull it off. And I was getting crazier by the day.

On Good Friday I met with Wendy who'd kindly edited the script. And that was the last work I did on the film. Her handwritten notes on a print-out of the script are in a pink bag about 3 feet from where I'm sitting right now, and they're just sitting there, not typed up.

A few months later I was having a conversation with a friend about my failed foray into screenwriting. "It sounds like you need a producer to help you find a producer," was how she succinctly put the problems that had driven me round the twist.

It still seems so wasteful that there's a script ready, actors keen on the project, a fundraising strategy, etc, and it's all going to waste because of the dearth of producers out there. But I can't keep producer-hunting when there are none to be found; and making myself mental in the process. So I guess that's that.

It took a while after giving up for my sanity to be restored; I continued to question what the point of my being alive was when I couldn't pull off something so seemingly simple. In fact, it took until about the summer: And then it was my body's - rather than my brain's - turn to fail on me.

I royally fucked up my left knee....

Hang on! I'm getting ahead of myself! Before there was the knee; there was the digestive discovery.

My stomach has been fucked for years now. Worse than the acid reflux, worse than the stomach feeling like it's on fire, worse than my ability to eat being totally dependent on my stomach's whims has been the belching. I have spent the last few years feeling like I've swallowed the contents of several helium balloons. Gastroenterologists have giving me drugs to speed up my digestive transit which just forces the belches to come out as farts instead. So I quit those because, frankly, the constant belching was better.

But having a stomach perpetually full of air was horrific. It was painful because my stomach was always so distended with gas. Sometimes I even had trouble breathing because my stomach was so full of air that it impaired my lungs ability to inflate properly. Sleeping was impossible because air rises so you can't belch when you're lying down flat. I had to wake up several times a night, sit up, and beat myself on the chest until I'd expelled most of the air so I could try sleeping again for a few more hours.

In May I decided to experiment with going lactose-free. Holy fucking shit, what a relief. Yes, I miss cheese. And milk chocolate. But it's a small price to pay for the relief of not having my breathing compromised by such an inflated stomach.

But back to the knee. It was about July I think that it went wrong. I have a pretty high pain tolerance. I'll walk around on broken feet without taking painkillers. In fact I fractured a metatarsal while my knee was knackered and it totally didn't bother me. But my knee; that was a different story. It wasn't a bony injury; I could tell that. My GP sent me for an x-ray to rule out bone damage, and I was vindicated. It was something tendony, I don't know exactly what: I never got a proper diagnosis. For about 2 and a half months I needed morphine just to be able to walk to the toilet in my teeny tiny flat.

Not only did I have the drugs making me drowsy; my knee itself was also exhausting. Different types of pain and injury have different effects. Some pains will keep you awake all night with their agony; other pains will drain all your energy and make you sleep 12 hours a night. My knee fell into that latter category.

Also over the summer I had to say farewell to my beloved 5 year old netbook. Almost everything I've written that's worth reading over the last 5 years was written on that machine. It was a cheap thing I picked up in the supermarket to take into hospital with me when I had surgery in Nov 08, but it provided 5 years of loyal service. I had to replace it with this temperamental piece of shit running Windoze 8. It's slow, moody and a pain in the arse. I suppose we at least make a matching pair. Though I'm sure that one day I'll lose my patience with this and throw it out of a window.

The autumn saw a return to depressive form; although not quite as severely as earlier in the year. I had a realisation that it was October and I had absolutely nothing to show for the year that was nearly finished. I may not have the health to hold down a job, I may spend a lot of my time sitting in hospital waiting rooms. But at least in 2012 I'd done quite a lot of blogging on my "good" days. 2013 was almost over and I'd done almost nothing. I'd written a film which I couldn't find a producer for; and that was literally all I'd done. No powerful blog posts, no going to protests. There were several protests during the summer that I couldn't go to because I didn't have enough painkillers to be able to stray that far from my bed. Once again I found myself considering what the point of me being alive was when I offered no value to anything.

I really didn't help my sanity thanks to a spur of the moment decision in September: I decided to join an online dating site and paid for a month's membership.

I've tried online dating before: Everyone is disablist. As you click through profiles you realise they all say:

No crazies.
No crazies.
No crazies.
No crazies.
No strange limps.
No crazies.

Obviously the spur of the moment decision to sign up didn't result in me meeting anyone. I didn't hear from even one person. But I'd paid for a month's membership so I stuck with it for the whole month; every day hating myself more and more. Partly for being so repulsive, and partly for being stupid enough to spend money on online dating knowing that all that would happen would be that I'd be reminded that everyone thinks I'm repulsive.

But back to the lack of productivity: The fact that I'd done nothing all year apart from a couple of TV and radio interviews was what made my presence on the 2013 Pink List such a shock. The year before it was an honour and a pleasure; but not a surprise. (I'd gotten advance notification from someone at the paper because they needed me to provide a headshot.) On my good days I'd done things that I felt proud of and I was honoured to have them recognised. Reading the Pink List again just now while getting the link to post here I sort-of expected to find 86 had gone blank because it had all been a mistake and I wasn't really supposed to be on there.

The year ended on a bacterial note. Given the frequency with which I usually get sinusitis I actually did pretty well in 2013. And I only had the infection for about 5 weeks before I got to see a GP for antibiotics. (I've had to put up with sinusitis for a couple of months before now.) Something else which sapped all my energy and left my splayed helplessly on the couch because the bacteria in my face were sucking all my spoons. I literally finished the antibiotics a couple of days before Christmas. So that was that, 2013 effectively over. And all I had to show for it was a lactose-free diet and the script for a film which will probably never get made.

There are several people I owe blog posts to; promises I made months ago but haven't had the energy to write. Yet. So far 2014 has been a bit of a crazy whirlwind of hospital appointments (they started on Jan 2nd and this is the first week all year without one). But hopefully - hopefully - I can get all caught up in the near future.

And on the subject of hopes: Please just let 2014 be a bit better than 2013. I know my life is always going to suck. But it'd be nice if I could have a year that sucked slightly less.

♫...It all keeps adding up, I think I'm cracking up...♫

I hate talking about my mental health. I mention the fact that I am depressed when I'm listing all my medical conditions or whatever. But I only talk about it in that detached, factual way. I don't usually go into the details of the thoughts in my head. I've learned from experience that nothing loses you friends faster than freaking them out by telling them that you don't know what the point of you remaining alive is.

At the weekend Giles Fraser wrote a Guardian article about how we shouldn't medicate having "a shit job or a shit home life". It's all stuff I've heard before when I've answered the question "why do you take anti-depressants?" with "because my life is terrible."

Would these people prefer it if I were dead rather than pathologising normal life events?

I've had depression on and off since I was about 8. And it was something that happened 5 years ago that really, truly, made me understand the difference between sadness and depression.

When my mum died I cried for days. I was grief-stricken, heart-broken, and sadder than I've ever been in my whole life. But, interestingly, I didn't feel depressed at all.

Although I've used the Black Dog metaphor once before because it fit what I was feeling at the time, I usually tend to think of depression as an unending night.

At night you can't go to the bank, because the bank is closed. At night you can't return phone calls because businesses are closed. There's no point in opening mail in the middle of the night because you can't make any phone calls the letter might require you to make until morning. You can't do housework in the middle of the night because the hoover or washing machine will wake your neighbours. In the middle of the night you can't phone a friend and say "hey, fancy meeting up for a cuppa?" Because A) They'll have work tomorrow. And B) Unless you want petrol station dispenser tea served through the night window: There's nowhere to go for a cuppa. At night all there really is to do is stare at the ceiling.

Depression to me feels like a night that never ends. Except the sun still rises and sets, the never ending darkness is inside my head. I can't go to the bank, or make a phone call, or open my mail, or do the housework, or ask a friend out for a cuppa because I feel too dark for such things. I just sit and stare at the wall.

When my mum died I cried and cried. But the sun still rose and set, even in my head. I was able to ring around funeral directors. I was able to phone the Peugeot garage repeatedly to harass them into fixing my fucking car because I really needed it. I was able to go to the bank to deal with mum's money. I was able to phone friends who'd also lost a parent because I wanted to talk to people who'd gone through what I was going through.

I was beyond sad, but I never felt that clinical depression darkness that I'm so familiar with. And I think the main reason for that was the amount of support I got. I spent most of the month following mum's death at my dad's house. There were always family members around helping out with stuff. When I came home for things like hospital appointments or to pick up my eventually repaired car there were always friends at my flat who'd come and bring food. I swear I didn't make myself a cup of tea for about a fortnight because there was always someone around to hand me a freshly-brewed cuppa.

That's such a sharp contrast to my normal life. Ordinarily the only human beings I ever speak to are the receptionists at my GP's surgery, my GP, the local pharmacist, and the doctors, nurses and receptionists at any of the 5 hospitals where I'm currently a registered patient. I'm such a frequent visitor to the gastroenterology clinic at my local hospital, and the rhinology clinic at the Royal National Throat, Nose and Ear hospital that I don't need to give my name at reception any more; they know who I am. I have no local friends to lean on for real life support, the only socialising I ever do is on social networks like Twitter where I engage with people who are scattered across the whole planet.

I can't be sure that such an unusual level of social support was the reason I didn't become clinically depressed in the immediate aftermath of my mum's death, but it certainly seems like the most obvious reason. In fact, it's the only thing I can think of.

But the things that do make me clinically depressed are exactly the kinds of things that Fraser believes people shouldn't receive medication for. I have a shit home life, no partner, and no job at all; never mind a shit one.

I don't take anti-depressants because they're forced upon me by pharmaceutical companies trying to enforce happiness. I went to my GP out of desperation because I couldn't carry on living feeling as awful as I did.

Yes, a great many of the things that make me feel low are down to social pressures. I don't feel a social pressure to have a compulsory smile on my face but we do live in a society in which people are pressured to have a job. Which is a huge problem for someone like me who is too ill to work. LBC (which is basically just a phone-in version of the Daily Mail) on in the Doctor's waiting room reminds you of the sheer number of people who think you're a scrounger and resent paying their taxes to keep you alive. You can't even go to the emergency dentist to get a broken filling fixed without being made to feel small when she asks you "what do you do for a living?" And this is just the social pressure angle, other issues with being too ill to work include: Never having any money, not having career satisfaction, and, of course, being ill all the time.

The fact that I live in a flat that's not accessible enough for my impaired mobility depresses me. Moving depresses me even more. In fact, it was living in the property before this one - the one that was a rodent infested hole the size of a cupboard - that prompted me to seek pharmacological help because I couldn't bear my living situation any more.

My absence of family depresses me. I have no partner, no children, no siblings and no mother. When my dad dies I will be absolutely and truly alone in this world. And don't bother suggesting that I might have found a partner by then: We all know that's never going to happen.

Being ill depresses me. The mobility impairment I've had all my life doesn't depress me in itself, but I can't count the number of times I've been reduced to darkness by people treating me cruelly because they're disablist bastards. Some of my physical health problems cause me to be depressed directly. There's a phase after a migraine called "postdrome" which can cause depression. You'd think I'd be happy that my pain had cleared up. But instead, after a migraine, all I can think about is how much I'd be better off dead. I try to remind myself that it's just the postdrome and I'll be fine in the morning; but it's hard to keep telling yourself that when the rest of your life is a fucking disaster.

I've failed at doing everything I loved. I failed at swimming. I failed at comedy. I tried doing an awesome Masters degree but never got to finish it because of my health. There is literally nothing in my life I can look back upon that I've succeeded at.

According to Giles Fraser, none of this list of misery warrants medication because it's normal to be sad when your life is terrible. And pathologising this normal response is just making Big Pharma rich. It doesn't matter that without drugs to boost my mood that I might not last long. Even just looking at this list of things in black and white makes me wonder what the point is of carrying on.

There are plenty of physical conditions that are a perfectly normal response to life's ups and downs that we medicate. Catching a cold is a perfectly normal response to sitting next to someone with a cold on the bus. We medicate colds with paracetamol and decongestants. Breaking your ankle is a perfectly normal response to slipping on an icy pavement. Should we not medicate that with painkillers? Or are the painkillers just pathologising a normal response to winter?

If it's OK to medicate physical responses to life's normalities that make you ill or cause you pain, why should mental illness or pain of social origin be treated any differently?

♫...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.

In tweets because I'm in a hurry

Choose and book can go fuck themselves. Seriously. That's now 2 hospital referrals they've rejected for me. Budget hoarding bastards.

— Lisa Egan (@lisybabe) April 17, 2012

Last time I had to write a fucking essay to get them to accept a gastro referral. If a GP says a patient needs to see a specialist: They do!

— Lisa Egan (@lisybabe) April 17, 2012

Choose and book's job is to allow patients to choose the hospital they want to go to and book an appt. Not reject referrals.

— Lisa Egan (@lisybabe) April 17, 2012

I read an article about the NHS doing this to save money, and now I can't find it. My Google fu is getting worse.

— Lisa Egan (@lisybabe) April 17, 2012

And you know what else is getting worse? My fucking jaw! Which is precisely why my GP referred me to a specialist.

— Lisa Egan (@lisybabe) April 17, 2012

♫...Health minister, I mean sinister...♫ #SaveOurNHS

Last week was a pretty ordinary week for me. On Monday morning I got up and went to see my GP so he could refer me to yet another specialist because yet another part of my body has gone wrong. From there I went to my local pharmacy for the second time in 2 working days. I go in there and everyone exclaims "hi Lisa!" I'm pretty sure it's not the kind of establishment the Cheers theme song writers had in mind.

On Wednesday I had a an appointment at a specialist hospital. The clinic in question I was attending that morning is totally unique, there is only that one in the whole country.

I got all this care on the NHS. Without question I wouldn't still be kicking around were it not for the care our health service provides.

Because I depend on the NHS so much, last week I also felt the need to go to a couple of "save our NHS" thingies. Unfortunately with so many of the services I depend on being under threat, going protesting is part of a fairly normal week now too. Rather ironically I couldn't go to the "hands around St Thomas'" vigil because I was sitting in a different hospital having medical implements shoved up my nose.

I've been one of the NHS's most loyal customers most of my life. Growing up with brittle bones I spent so much of my childhood waiting for x-rays that I could spell "danger" and "radiation" from reading the signs on the door at about the same age that most of my peers were getting to grips with "cat" and "dog". During my teens and early 20s I used the NHS much less, though still a bit more than Joe Average. From my mid-twenties onwards my life has been this thrill-o-rama of hospital appointments and increasingly long prescriptions: Some of my current health problems are related to my osteogenesis and some are not. Then there's those that are not really osteogenesis-related, but OI exacerbates them. I'm basically falling apart.

I know of people who are in favour of these reforms who've been mystified by the fact that I'm opposed to the bill but acknowledge stuff like this. It's quite simple really: I think that when you care passionately for something it's important to critically assess its failings as well as its achievements. Acknowledging that something could be better doesn't mean you want to see it dismantled.

I care passionately about my car. Because of my impaired mobility I need it for most excursions out of my flat. Acknowledging that the heating doesn't work properly and that I wish the heating worked better doesn't mean I want my car to be shoved in a crusher.

I care passionately about the NHS too. I need it to stay alive. Acknowledging that it often fails groups of people doesn't mean I want the NHS dismantled. I want to see the problems fixed, just like I wish Peugeot would fix my car's heating so it doesn't get progressively cooler the faster my car is going.

The thing is: The NHS can't fix their problems until they know that they exist, and where they exist. Just like Peugeot can't fix my car until they find where the fault actually is. Not being a petrol head I can't run diagnostics on my car to find the cause of the problem, but I can help the NHS find problems by writing a complaint when I encounter a useless doctor. Evidence like the aforementioned stuff on elderly care, or Mencap's work on people with learning difficulties getting failed by the NHS all help the NHS to identify faults so they can be fixed. Suing over clinical errors was a way of not only getting compensation for injuries incurred, but it was yet another way of providing feedback over where faults lie. The Legal Aid Bill puts that in jeopardy.

And quite simply there's the fact that the Health and Social Care Bill does nothing to improve the care received by the demographics currently failed by the NHS. If anything you can bet that such patients will receive even worse care under a more competitive system.

Another one of the NHS's big issues is waiting lists. Last week my GP referred me to maxillofacial because I need to see someone about my right temporomandibular joint. I need to see someone about it now, not in four months time. At this precise moment my jaw is hurting so much that the pain travels right the way around to the base of my skull. Not only do these reforms fail to address the issue of waiting lists, if anything they'll make matters worse.

When Lansley and co get on the defensive about the reforms they point out that Labour started the process of outsourcing to private providers. (Which is true, but it doesn't mean they have to keep up the practice.) Because it's been happening for a few years I've had a couple of experiences and know first-hand that it increases, rather than decreases, wait times.

Three years ago an orthopaedic surgeon sent me to have my knackered ankle MRIed. I was given an appointment to have it done six weeks later. Two weeks before the appointment I got a letter telling me that my appointment had been cancelled and instead I was going to be having my MRI at a private hospital because they were using private providers to cut down their waiting lists. So did this mean that I had my MRI sooner than the two further weeks I had left to wait? Of course not. Want to know how long I did wait? 10 months. By the time my ankle was finally MRIed it was a year since the consultant ordered it.

Once upon a time orthotists actually made orthotics. As a child I had countless splints made while I waited. Now all orthotists do is take a mould of the body part to be supported and send the mould to a private provider to make the product. The same orthopod that ordered the MRI also ordered orthoses to be made for my shoes. The ones I'm waiting for now have been sent back to the factory three times since they were first made, because the private company can't follow simple instructions. It's been about two years since I went back to the orthotist because the first pair had worn out, so can someone please explain to me how a two-year wait can possibly be justified when they could actually be made on the spot?

I'm really not sure I can face the prospect of waiting a year or two to get my jaw seen to.

Outsourcing to private providers doesn't just result in excessive delays and headaches from where you kept head-butting the wall in frustration; the consequences can be far graver.

The government want GPs to handle budgets taking that responsibility out of the hands of the PCT's. When my GP makes judgements about whether or not I need to see a maxillofacial consultant I want him to make that decision based on clinical need, not budgetary concerns. (Additionally there's the fact that GPs are so untrustworthy according to the government that they can't be allowed to make judgements on someone's fitness for work: That's the government's defence for why they "need" to use Atos). I'd rather my doctor spend his time doctoring, leaving the accountants at the PCT's to do the accounting. If GPs don't want to spend their time dealing with budgets they're going to need to employ the bureaucrats who've just had a severance package from their PCT which is a waste of taxpayers money. And if there's one thing this government like to bang on about: It's taxpayers getting value for their money.

But the big, big, BIG problem with these reforms is around the role of the Secretary of State. Initially the bill removed the obligation on the Secretary of State to provide a National Health Service. This would have been the end of the National Health Service that is accessible to all regardless of ability to pay. Thousands of amendments later the bill now only greatly reduces that obligation, rather than removing it entirely. But it's still likely to see people like me with many health problems, and no money, getting absolutely shafted once the obligation to provide an NHS has been cut back.

The government keep insisting that the reforms aren't about "privatising" the NHS. Yet we keep hearing about more and more services getting outsourced: And the bill hasn't even passed yet! Though ever increasing outsourcing isn't really surprising when you look at the list of politicians with ties to private healthcare companies. This is all despite the fact that patient care is worse under private providers (I refer you back to my own 2 experiences of outsourced "care") and our current system is more cost-effective. It's worth noting that that last linked article is not only from The Torygraph, but the writer freely admits that he has no ideological opposition to breaking up the NHS if a cheaper way of providing care could be found.

Nye Bevan famously said "the NHS will last as long as there are folks left with the faith the fight for it." I'm deeply worried that most people in Britain have become so apathetic and/or cruel (they let the horrific Welfare Reform Bill pass…) that there are no longer enough people with enough faith to keep this world leading, value-for-money, health service alive.

What can you do? There are 2 petitions to get the bill delayed until the government have published the risk register. One is from Avaaz, the other from 38 Degrees. You could also come to Parliament Square this afternoon, but you might want to be aware that yesterday's demo was just a tad over-policed.

♫ = Andrew Lansley Rap

Benefits part 1: How I benefit

It's taken me a while to even start writing these posts because at the moment I'm even less functional than usual. Overheating is one of the less pleasant symptoms of OI, and in case you hadn't noticed it's been rather warm lately. And then there's the fact that I've had a cold on top of my chronic sinus problems for more than 3 weeks which has had me whimpering a lot in between doses of painkillers. Basically all I've been fit for is laying on the sofa watching NCIS.

Edit: Another week has passed since I first sat and started writing this post before I found the spoons to come back and have another crack at finishing it.

I suppose I should start off by explaining exactly why I get the benefits I do. I'm generally of the opinion that my medical history is my business, not yours. Which is a bit odd because I'm a fairly open person. I think it's a reaction to the fact that because I'm disabled my medical history is supposed to be out there for public consumption. I'm also definitely of the opinion that my income is my business. But I've been called a "scrounger" by our politicians so many times that I've been ground down.

So here's my history:

I get Disability Living Allowance. I get the high rate mobility (HRM) component and middle rate care (MRC) component. I get HRM because I'm virtually unable to walk. I can walk a very short distance but only very slowly and with extreme pain and difficulty. My aforementioned osteogenesis means that a good many of my joints have been shattered so have extremely limited movement. The rest of my joints are held in place by tendons and ligaments of such poor quality that my 4kg cat can dislocate my knee by sitting on it. Because my tendons and ligaments don't do a good job of holding me up I fall over very easily, which is really not very safe in someone with brittle bones. Between the pain, the difficulty, the slowness and the danger involved in walking I'd be pretty much housebound without a wheelchair. I couldn't even walk as far as the bus stop at the top of my street before my knees had swollen up so much that I couldn't bend them for the rest of the day.

I then get MRC because I need constant supervision due to injuring easily. Activities during which I’ve broken bones include walking¹, sleeping² and eating³. So the government can't scrimp on my supervision by telling me to cut out risky activities cos, you know, eating and sleeping are essential for survival.

I've had osteogenesis since I was born (well, actually, since I was conceived) but until about 5 years ago I was perfectly healthy. There's a difference between illness and impairment. For many people they overlap but for many more there's a great deal of difference. So up until the age of about 26 I had a physical impairment, but I was a picture of health. At one point I didn't even notice that my GP had deregistered me because they hadn't seen or heard from me in so long. Being a healthy young person I earned for a significant chunk of my degree despite typical student work like bartending being not accessible to me. When I graduated I took on 2 part time jobs rather than a full time position. In addition I got paid for writing articles, doing media stuff for the now defunct Disability Rights Commission, and eventually I progressed far enough through the stand up circuit to get paid for making people laugh.

Then I got sick. I've always had slightly dodgy sinuses but starting in 2004 they got progressively worse. I can remember the day things started going downhill actually: I was in Edinburgh and it was the day I went to see Laurence's show. I've always taken co-dydramol for my bone and joint pain. But that day in Edinburgh was the first time in my life I'd had a headache that co-dydramol couldn't touch. I might as well have swallowed 2 M&Ms. These sinus pressure headaches became more severe and more frequent until I became unable to work in 2006 because spending roughly 2 days a fortnight in bed in agony doesn't please an employer.

How painful can a blocked nose be? Well, having grown up breaking my bones regularly I have a much higher psychological tolerance to pain than the average person. I recently had a nurse in a laser clinic describe me as "remarkable" because she was burning me with a laser and I didn't even blink. 2 years ago I broke my nose and didn't notice for 3 weeks because the pain was so minimal compared to what I'm used to in that region. It was only when I reached 3 weeks I thought "hmm. If it was anything other than broken it'd be healed by now." I've never, ever, taken anything stronger than 10/500 co-dydramol for a broken bone (or 3) but nothing less than morphine provides any relief at all for my sinuses. Morphine may relieve my pain but it comes with a side-effect of making me "drunk": it reduces my inhibitions and gives me verbal diarrhoea. So for around 2 days every 2 weeks I have the choice of being either in too much pain to work or too stoned to work. Someone who needs 2 out of every 10 working days off is not employable. 2 days every 2 weeks is an average during a "good" period. If I catch a cold they can last for months because related to my sinus problems I also have a rather buggered immune system. And my sinus pain can be bad for every one of those days for the whole 2 months it takes me to shake the cold.

"Why don't you work part time?" Because employers expect to know when you're coming in to work. Even if they list 'flexi-time' as an option they still expect you to be present at certain times and they like to know in advance when you'll be coming in. I can't predict in advance which days I'm going to be ill.

"Why don't you work from home?" I doesn't matter where I'm located. On days when I'm too ill to work, I'm too ill to work.

"Why don't you write?" When I had a contract as a columnist I'd get a phone call on the Tuesday asking me to submit an article on Friday. If I was ill on the Wednesday and the Thursday I'd have either nothing to hand in on Friday or I'd hand in something written under the influence of morphine. Either way, my contract would not get renewed. And it's taken me 8 days to write this piddling little blog post.

If I were otherwise unimpaired and just had my sinus problems I could probably manage a physical job that require little brainpower on ill days by taking so much morphine I couldn't feel a thing. I'd make absolutely no sense so would be unable to do a "thinking job", but I could manage a repetitive task job like unloading loaves of bread from a trolley and placing them on a supermarket shelf. But I'm not otherwise unimpaired, I have a knackered skeleton and "thinking jobs" are the only kind I can physically do.

I've really explored all the options and working is just not possible. So I get Incapacity Benefit. This is topped up with a very tiny amount of Income Support to make up the total a severely disabled person living alone is deemed by the government as needing to live on. I also get Housing Benefit to keep the roof over my head.

Part 2 coming soon. Unless this sore throat and bunged up ear turns into another cold...

---

¹ December 2008 I tore a tendon out of a metatarsal which pulled the tip of the bone off with it. This injury was the result of simply walking normally.
² In the early hours of 01/01/2000 I slept in an awkward position. I got woken up by blinding pain at about 4am. The awkward sleeping position had crushed not just one but several vertebrae.
³ As a child I caught my forearm on the edge of the table while eating dinner. This light tap caused my forearm to snap (I only have one forearm bone now where the radius and ulna have been broken so many times they’ve fused together).

Oink?

Got up this morning (well, afternoon. It's Sunday and I was still stuck in a traffic jam at 00:30 last night/this morning) to find a text message from a friend I'd hung out with yesterday afternoon. She's got swine flu. Great. So I phoned NHS Direct for advice and the nurse I spoke to carried out an "assessment":

Her: Do you ache all over?

Me: I have Ostesogenesis Imperfecta.

Her: Do you have a blocked nose or difficulty breathing?

Me: I have severe chronic sinusitis.

Her: Are you fatigued?

Me: I take 4 times the standard daily adult dose of antihistamines so I'm always fatigued.

Her: Do you have a sore throat?

Me: I have a persistent sore throat from the Nasonex

Her: Do you have any muscle weakness?

Me: I have Osteogenesis Imperfecta.

And my favourite:

Her: Imagine the worst headache you could possibly have. Do you have that?

Me: I have severe chronic sinusitis. My normal headaches require morphine.

Hmm...

So, illness got the better of me, and I never did finish NaBloPoMo. Oh well.

On Nov 25th I finally got the sinus surgery I've been waiting for for about 3 years. Yay!

Except 9 days later, my mother had a heart attack. She's still in hospital in Colchester.

My body is trying to divert all its energy and resources in the direction of my nose for healing purposes, while I'm trying to use all my energy in driving up and down the A12.

Needless to say that I think the biggest loser in my body's energy war is me, and I'm knackered.

NaBloPoMo 8

I'm really fed up with being ill now. And I've run out of Tunes.

NaBloPoMo 7

After a couple of days of feeling a little better, today I feel rotten again.

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.

NaBloPoMo 4

Still got cotton wool for brains. Let's hope American voters are capable of thinking more clearly than me.

NaBloPoMo 3

Still ill. This could be a very boring month of daily updates.

NaBloPoMo 2

Still ill.

NaBloPoMo 1

I was thinking of doing NaBloPoMo, except illness stole my brain and replaced it with cotton wool.

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.