Out, damned spot!

It starts with a slight tickle in my throat. Then I sense an icy sharpness somewhere a little further down. Then I spontaneously cough. But it's not a normal cough. Instead of either a little bit of satisfying gunk popping up, or a reassuringly dry echo, it's thin. And liquid. And if my chest had eyes, i'd see it was red.

It's this succession of events that fills me with dread. Not in a Keatsian "this is my death warrant" kind of dread, more a "oh for fucks sake, not in public" kind of dread. Because when I start coughing blood, it doesn't stop for what feels like a lifetime. I can't do a big cough or a huff until whatever is there shifts, I have to wait for whatever torn blood vessel deep down in the fragile tips of my lungs clots. And the thing is my blood doesn't like to clot. Thanks liver.

So for the next 5 or so minutes I keep coughing, every few seconds. Bubble, cough, swallow, pause. Bubble, cough, swallow, pause. My inner vampire i'm sure relishes at this stream of molten rubies, but not even a disillusioned schizophrenic wannabe vampire can cast aside the disgusting clammy metallic taste and slimy consistency that i'm forced to swallow. Sometimes, if it's been going on for longer than I care to imagine, I grab a glass and start to watch the disturbing contents of my lungs fill it up. When this first started to happen a few years ago, I used to be in tears, thinking this was the beginning of the end. Blood being ejected from any part of the body is horrifying, it seems to trigger within people an extreme reaction of abject terror. Not surprising given it's our core, our unrelenting fuel.

It now doesn't scare me, knowing it's not too too serious, and probably (and like so many gory body things) because i've become so immune to anything remotely disturbing. It's not that it just doesn't scare me, when I see blood, it almost fascinates me. It's the oddest texture when it clots, like fast-setting Vampire jelly. And the colour is insane - the deepest red, so rich and regal. I suggested painting our bathroom that colour. Mum firmly said no. Pity, because it complimented the tiles just perfectly.

CF desensitises you greatly to things that might turn the stomachs of the general population with endless exposure of blood, phlegm, organs, bodily functions, and now transplants. You grow up talking about organs in terms of how they're functioning, what they're up to, why they're not working, how you can improve them. Bodies and all that goes on inside them become stuff of everyday banal conversation. Gushing blood, funny x-rays, CT scans of lumpy livers or increasingly scarred lungs become problems that need to be solved, shapes and shadows and highlights on a screen, rather than an invisible amalgamation of your 'essence of being' or some bollocks like that. Bodies are like machines, parts making up a whole. Bits and bobs, nuts and bolts. You see your body like a machine, you don't get scared when it starts to dribble oil. If something stops working, you try and replace it. I suppose it's a sort of uncanny detachment, a severing of the mind from the body.

This living hand, now warm and capable

Of earnest grasping, would, if it were cold

And in the icy silence of the tomb,

So haunt thy days and chill thy dreaming nights

That thou wouldst wish thine own heart dry of blood

So in my veins red life might stream again,

And thou be conscience-calmed—see here it is—

I hold it towards you.

                                                  John Keats

(See how odd that poem is? That's what i'm on about! An uncanny detachment from your body.)

Unsettlingly unfazed, alarmingly desensitized. I think this is why you'll find most CFers have a grotesquely dark sense of humour. I sure do, but i'm not sure whether the uninitiated public are ready for it. Should hear the 'jokes' thrown about in the safe confines of this house! I hate to say i've caused a few pale faces with my flippant remarks of very un-flippant things... Oops. I think it's the unknown that unsettles the most. Whoever said 'ignorance is bliss' was seriously mistaken. 'Knowledge is power' reigns in my kingdom. Knowledge calms, knowledge soothes, knowledge hands you the tools to understand what is going on in our intricate and amazing bodies. If you know, then it certainly won't be the fear that consumes you.

A stream of blabbering consciousness

OK I'll try not to go too Virginia Woolf on you, because we all know that could end up disastrous and potentially boring. No promises though. I KNOW I keep posting about CF stuff, but to be perfectly honest, not much is happening in my life right now apart from CF shizzle. Trust me, I cannot wait until I can start blogging about a life like the one I had a couple of years ago! And it'll be even better because it'll be a life without hypos and blood sugar monitoring and creon with every meal and shitty hangovers. I stumbled upon a blog where the person complains about having to monitor her blood sugars for 48 hours whilst in hospital, and how annoying and tedious it is because she can't snack or eat anything too sugary etc etc. I wanted to scream at the screen "try doing this every single day!" 48 hours in hospital doesn't even take into account energy used to travel places, walking about, socializing, drinking - every single thing that affects sugar levels. I'm just jealous. It's such a delicate art to get right, takes so much forward planning and thinking ahead, even seems mathmatical at times when trying to calculate how much energy you'll use against how many carbs you've eaten against how much insulin you should therefore take. It's hard. I like to think of it as keeping my little grey cells active whilst they otherwise would be rotting away as I watch Neighbours day after day. Dust to dust, ashes to ashes, wasting and sitting and stewing as I slowly become a shrivelled body with an australian accent. I already have a shrivelled pancreas - two decades of it being completely defunct. I can't get over how lucky I will be to have a new pancreas. Proper life changing shit right there. Did I ever write that i'll have two pancreases?! They're not going to take the current one out for some reason, but due to it's shrunken size it won't take up much space. Odd huh. I keep having Tarentino/CSI style visions of my autopsy and the forensic pathologist discovering this absurdity within me. "Holy moly! This gal's got two fucking pancreases! Whatta freak!" My mind is slipping into it's black comic ways. It does this all too easily. This sunny facade hides a comically sinister interior. Maybe it's because i'm not fazed by blood nor gore nor shockingly blunt facts about the body. My mum's dad was a doctor, and she brought me back his book of colour photographs of the insides of the human body. Cadaver after cadaver after cadaver. I'll be honest, it was a little queezy-making at first, but you de-sensitize very quickly to the puffed out organs and rubbery skin that almost looks like Egyptian papyrus paper. It's fascinating. Imagining that once they were functioning entities with blood rushing through them, powering them, as they relentlessly work to enable people to write drivel on blogs (it's an old book, so they were probably writing drivel in ink to lovers far away or to the next door neighbour asking them to please refrain from having the wireless on too loud.) But now they're just artificially coloured ghosts of lives that once had been, delicate yet scarily robust as if Damien Hirst had created yet more modern art soaked and protected in formaldehyde.  I now have a weird fascination with finding people's livers and spleens and doing that 'tap-tap' thing doctors do and pretending I know where everything is. The thing is, it's not hard when they're bloody massive, but normal people's ones are hard to find! Still, I go, "ahh yes, no hepatosplenomegaly here". My mum looks at me like i'm frickin bonkers. But go on, say that word, and I bet you'll want to say it again and again. I read on wikipedia, it's the simultaneous enlargement of both the liver and the spleen. Hepato - spleno - megaly. I passed a degree thanks to wikipedia. I love you wikipedia, you unreliable beautiful source.

How's that for stream of consciousness. Actually, kinda shit.
I could go on, but I won't. Because I know you stopped reading a long time ago and just skipped to this paragraph because it was shorter. 

I'll bullet point the rest.

- Today I am eating jelly babies and catching up on Once Upon A Time and painting strawberrys on my nails. 

- Yesterday I used my Freedom pass for the first time, and caught two busses home BECAUSE IT WAS FREE AND BECAUSE I COULD. Saved 5 mins of walking. Felt brilliant.

- Our Sistine Chapel bathroom is nearly finished and looks beautiful. I'm going to order candles with Raphael's cherubs on from amazon. Then create and frame a photoshopped version of our cats, that would look a bit like this.

- Watched Bright Star again last night with a fellow Keats lover while eating ice cream and (more) jelly babies and carbonnara. Not all together. I love Ben Whishaw.

- I need to wash my slippers because they're getting a bit smelly. Sorry.