Archives: Writing

EMILY UPDATE:

As updated on Friday, Emily came through the surgery well and is currently in intensive care.  They made an attempt to wean her off her ventilator today, but she didn’t take to it too well and has been sedated again.  This isn’t a major issue, as it is quite common for the de-ventilation (as it were) to take a little while, what with the mixture of sedation, pain meds and new cocktails of anti-rejection drugs.  She has become slightly more awake and alert at points and is showing good signs of her old bubbly personality in flashes, so things are looking cautiously optimistic at the moment.

As for me, well, the last two days have been pretty up and down.

One of the weirdest things at the moment is how other people seem to think that I’d be really adversely affected by Em’s transplant – perhaps expecting me to be jealous or angry, the old “why not me?” chestnut.

But the truth is, I don’t feel anything like that at all.  I’m completely overwhelmed with joy for Em and her family and devoted boyfriend – I couldn’t be happier for them all, and especially seeing such a close friend going through what we’ve both been hoping for for the last two years.  It feels odd, because there’s a part of me that thinks I should be feeling some pangs of jealousy or upset, but it just isn’t there.

It has made me think a lot more about my own transplant, but actually in a much more positive light.  I have to confess that I have had moments, particularly over the last few weeks leading up to Christmas, where I have been doubting my conviction that this will come for me, and I still don’t like to hear people talk about it with such certainty in their voices. 

But I know that Em has been through patches like me as well – particularly in the summer when she had an exceptionally bad spell and was touch-and-go for a while, and we spoke about it afterwards.  And I know that although she had her doubts, she never lost faith and never stopped fighting, right up to her call.  She’s set a kind of positive-thinking example to me and perked up not only my enthusiasm, but also my previously rigid belief that this will come for me too.

Secretly, I also have to admit I’m quite pleased she got in there first, because she’ll now be on hand to help talk me through all the relevant stages of post-op recuperation as I come across them!

The last few days have been a bit rubbish for me, though, since I’ve started to feel really sick after my evening meal for the last three nights in a row now and the pattern is becoming a little disturbing.

The first night, on Friday, I had a horrible moment of thinking I was coming down with the same virus that hit K on Christmas day and that has slowly been working its way through her family.  But so far I’ve not actually been sick.

Another theory that struck me yesterday was that, having spent two afternoons back at the flat trying to get it ship-shape before we aim to move back in over the next couple of weeks, all the dust and stuff we’d been kicking up has upset my chest and made me more productive, which in turn I’ve been coughing up and swallowing a lot – causing not-too-goodness in my stomach.

Although that seemed a plausible explanation yesterday, it seems less so today, when I’ve done nothing but chill out at my ‘rents.  And it also doesn’t explain why it’s only in the evenings, either.

It’s not too bad, just annoying that I can’t seem to eat in the evenings without feeling like I’m going to hurl for a couple of hours afterwards.  It goes off slowly over the course of the evening, but it’s not very pleasant to have to put up with.

Still, things could be worse and my chest is still doing very well a week into the New Year.  I’m waking up every morning with lots of energy and get-up-and-go and I’m hopeful of a successful move back to the flat in the coming week or so, which will be lovely not just for K and me, but doubtless for Mum and Dad, too.

So next week is a chance to start focusing back on work, with the start of a new term at MKT and a show to build towards, as well as time to start turning my attention to the next issue of CF Talk.  And then, of course, there’s all my writing projects, too….

It’s been a bit of a quiet, stay-at-home kind of day today, spent largely on the sofa chilling out.  I have, however, managed to do my first piece of real writing for ages and I’m really pleased with it.

It’s an odd thing, writing.  I love doing it and when I sit in front of a screen with a real purpose to my ideas, I seem to be able to rattle things off at speed.  The 6-page scene I wrote today, which is something that will hopefully be part of the Youth Theatre show in April, took me a little under an hour to write, although I must confess I wrote the verse part of it over the course of an hour waiting for K yesterday.

It seems that when I have a deadline to write to is when I do my best writing and when my mind focuses most clearly on what it’s trying to do and say.  If I’m just sitting there of my own volition, tapping away at the keys and seeing where I end up, it doesn’t come in the same way.

What this means, of course, is that once I start getting commissioned and paid for my work and I’m a top-flight, in-demand scriptwriter and playwright, I’ll be knocking out classics left, right and centre (OK, OK, but stay with me), whilst right now I need to find that spur to keep me going when I don’t have an identifiable goal to achieve in front of me.

People say the key to it is to make sure you write a little every day, no matter what it is.  Specifically, I’ve heard it said that you should set yourself a page or word target that you must hit no matter what.  The trouble with those plans is that I always just end up writing drivel to fill the quota and end up hating myself for being so uncreative and unimaginative.  And when you think you’ve lost it, your enthusiasm for the project drops off the face of the planet.

All of which does nothing really to solve my dilemma, but it’s nice to be writing again and reading my own words on a page.  There’s still something wonderful about reading back over scripts that have just emerged from your head through your fingers and ended up as a formatted file on a hard drive and ink-on-paper in front of you.

It never ceases to amaze me when I sit at a computer that in a matter of a few hours I can turn out something really quite readable to fill a blank page and possibly more.

My head tells me that I need to set myself some time aside everyday to try to achieve something in writing, even without self-imposed artificial quotas and the like, but at the same time I know that if I set myself a timetable and don’t stick to it or am too tired to achieve it, I’ll just get down about it.

But enough of that – it’s all a bit unnecessary.

Today I watched FIELD OF DREAMS with K on the sofa and absolutely loved it.  It was a Christmas gift from her because I had told her I’d not seen it and I’d heard lots of good things about it from lots of people, so I finally sat down to watch it today. 

It’s a lovely little film, filled with a beautiful kind of magic that you somehow just don’t question.  It’s one of those films with such wonderful heart that you forgive it it’s little foibles and unnecessaries and allow yourself to get swept up with the characters and their journey and the magic they’re experiencing.

And who knew Kevin Costner used to be so watchable?  And not in dodgy-accented, car-crash kind of terms?  I mean, he was almost like a real actor.  You’d have sworn he’d never do something as silly as make Waterworld.

I also wasted nearly an hour of my day on a programme about the Archers, which promised in it’s Sky+ blurb that it would follow the production team as they put together the show’s 15,000th episode – the kind of behind-the-scenes peek that I’ve always been addicted to.  But instead, it spent the vast majority of it’s time covering the whole of the back-story to this momentous episode. 

Which, when you’re covering a radio drama on TV, is somewhat dull.

Still, at least I watched that before I watched Field of Dreams, so I could have my memory of it wiped.

Also watched a great Mark Lawson interview with Armando Iannucci, one of the writer/producers behind things like The Day Today and Alan Partridge or, more recently, The Thick of It.  I love watching programmes about writers and programme makers and getting a glimpse into their various thought-processes and working practices.  It helps focus the mind onto things I want to do and ways in which I could drive myself forward.

Of course, we all know all I really need to drive myself forward is a deadline to write to.

Today’s been a really good day for me and I’m really pleased with myself for it, too. 

Yesterday, apart from slumming it on the sofa trying to urge my chest pains to go away, I spent the afternoon writing another article for the Guardian’s Comment is Free site – this time about Transplantation.

Em and Em, the partners in crime behind Live Life Then Give Life (from whom you should all have bought a T-shirt, not to mention signed up to the Organ Donor Register), organised another big publicity push for Christmas, which I sadly missed out on because of all my recent email hiccups and account confusions.

So, in order to still be doing my part, I mentioned the campaign to the guy who’d contacted me about writing my previous article to see if he was interested.  He said he was, so I spent the afternoon writing up a general summary of the status of transplant in the country and the various different systems around the world.

What I’m most pleased about it that he particularly wanted to stir up a bit of debate about the subject and if you go and check out the article online (here), you’ll find a lively exchange in the comments section underneath, which is really good to see.  Except maybe for the comment about my hair…

After being in the study working all afternoon, my chest was protesting a little again so I stayed on the sofa watching a movie in the evening and headed to bed at a sensible time. 

Better than anything was the fact that I got myself comfortable (not always possible with chest pains) and slept solidly through until 11am this morning – 12 hours sleep being something I’ve not enjoyed for as long as I can remember.  It was blissful to wake up and discover I’d been out like a light all night.  And it’s really recharging, too.

What I’m most pleased with today, though, is that I’ve stayed true to my promise to chill for the next few days before Christmas and have done very little again today.  I’ve been massively helped by the fact that I’ve had friends round to see me most of the day, which is good for sitting on the sofa chatting and not having to move or do other things.

But I’ve also been really good at doing physio sessions and stopping myself from “popping out” or sitting in the study at the computer for too long, or at the table in the kitchen reading the paper – all of which have a tendency to put extra strain on my chest and induce pain here and there.

Fingers crossed, I’ll be able to carry my discipline over to tomorrow, when I’ve got a little more planned, but am hoping that when I’m not out of the house, I’ll either be in bed or on the sofa doing nothing at all.  And K’s back from her parents’ tomorrow afternoon, so she’ll be around to police me.

I’ve been making myself chuckle this afternoon as my procrastination levels increase.  In fact, I’ve found a whole writers self-help website devoted to aiding folks like me to get down to the nitty-gritty of actually churning something out.

The last couple of nights I’ve hardly slept at all.  Monday night I was up until around 3am before finally dozing off, sleeping through till 11am save for an hour’s break in the middle around 6am to do much IVs.  Last night was worse – I didn’t manage to sleep at all until after my morning dose.

Oddly, it doesn’t appear to be your regular, run-of-the-mill, thinking-horrible-thoughts kind of insomnia.  Rather, it’s just that as I improve health-wise my brain is staying resolutely five strides ahead of my body.  So while I can’t do much physically during the day, my brain is aching to be put to use and if it’s not (as it hasn’t been) then it settles itself into manic thinking patterns when I hit the sack and keeps me wide awake, no matter how much my eyelids beg to differ.

So today I have been resolutely trying my best to a) stay awake all day and not take my usual afternoon nap and b) do things with my day that will make my mind feel like it’s had if not a real work out, at least a little bit of a gentle jog.

It struck me when I was  writing out my Christmas cards this afternoon that getting myself writing would be the most obvious method of productive mind-occupation, so I set that part of my brain that never stops whirring creatively to spin on ahead whilst I wrote, corrected and re-wrote the cards that kept being incorrectly filled in due to my non-multi-tasking man-brain.

Perhaps what I needed by way of a spur, I figured, was to tackle a branch of writing I’ve not tackled before – something different and fresh and intriguing to me.  I’ve written plays and I’ve written screenplays – I’ve even finished some of them, too.  So why not try something more narrative – a short story or similar?

In fact, it was the Stephen King interview I watched yesterday evening that provided my spark of inspiration – if I wanted to stir my creative brain and really test my mettle, why not try what writers used to do when they needed to churn something out (albeit usually for the cash than the creative momentum) and knock out a classic piece of pulp fiction?

Pulp fiction is that stuff that used to be known as Dime-Store Novels in the US and is more commonly known these days as Airport Fiction – that kind of crime-based, semi-plotted, under-characterised pap that you whistle through when you’re lying on the beach in the summer months trying not to remember that it’s only four more days till you’re back at work.

What better, I thought, than to pin myself down to knocking something out which needn’t have any literary merit at all, but merely serve as an exercise to show that a) I can still write and b) I can make myself focus on one thing for at least the space of time it takes me to write a chapter or two.

Of course, we all know that my mind doesn’t work like that.  Instead, I set off researching into pulp fiction and it’s current place in the literary world: is it still written, published, sold around the world?  Could I, conceivably, sell my mini-opus for publication when I’m done with it?

And research it I did.  I even answered most of my questions.  Which was annoying because it meant I had to come up with more questions so I didn’t have to actually start writing.

Surfing through the myriad writers’ websites dotted around the ‘net, I came across various tips for getting into good writing habits and avoiding said procrastination.  Eventually, I discovered an entire website devoted to a 30-day programme to help writers get organised and write.

That’s right: a 30-DAY PROGRAMME.  That’s an entire month’s worth of tips and exercises designed so that, at the end of the allotted period, you’re set to go write your masterpiece.  30 (Thirty) Days.  To get organised.  To AVOID procrastination.  It’s so funny, I can’t even do it justice with a smart-arsed quip.

Needless to say, I shall be sticking point-by-point the programme and ensuring that I don’t achieve ANYTHING by way of productivity before the New Year.  After all, if I don’t pay attention to the site I found, all my hard research work from today will have been for nothing, won’t it?

On my usual daily tour of my favourite websites today, I stopped in on my friend Em’s blog to discover the following paragraph, which so neatly encapsulated the to-ings and fro-ings of my mind and body at the moment I thought it silly to try to reword it to enlighten my readership and decided instead just to lift it wholesale and try to pass it off as my own.

“Sadly after 22 years I still don’t quite seem to have got my head round the concept of “improving” as opposed to “magically cured and reinstated with working lungs” and so the minute I feel a turn around I start jumping around and doing lots and then am surprised when said behaviour doesn’t go down well with my lungs which were (for want of a better phrase) breathing a sigh of relief that I was finally operating on a level they can maintain. I mentioned to my physio that you’d think I would have learned by now, she neatly sidestepped this remark by laughing politely and neglecting to comment.”

Sadly, my sense of duty and honour (and the knowledge that we have enough mutual friends for it to be highly unlikely that I wouldn’t get caught) meant I just couldn’t bring myself to fully commit to the stealthy liberation of the text.

I’d like to say my conscience was pricked by the knowledge that Em managed to write it from her hospital bed and went to all the trouble of emailing it to a friend and getting it posted for her, but I know if I did that then she’d eventually read this and send my huge screaming emails and numerous phone calls berating me for jumping on the pity band-wagon which we all so deplore.  Plus it’s also untrue, for that precise reason – pity is a trait all people should deplore. (Doesn’t that sound like a high school philosophy essay question? Pity is a trait all people should deplore: Discuss)

At the end of the day, when someone says what you want to say better than the way you wanted to say it, it’s best to hold your hands up and admit defeat than drive yourself barmy trying to best something that you can’t.

If you needed any proof of that, just take a look at what a complete and total load of waffle I’ve written trying to justify lifting a paragraph of a friend’s blog in order to help explain the challenges of getting back on your feet.

I think I should go and lie down.  Maybe this plagiarism lark is too heavy for me, after all.  Next time I’ll stick to my own drivel.

I’m clearly starting to reach sensible fitness levels as for the first time over the weekend, my mind has started to whir with possibilities of things I could be doing, or would like to do in the New Year.

Sadly, most of them are all things that will be beyond my reach before my Tx, but I suppose there’s no problem having some kind of roughly sketched plan for the future, however far away it may be.

At times like these, I find the difficult thing is to focus my mind on to one thing in particular and get something done.

Right now, for example, would be a perfect time to knuckle down and get some really good writing done.  Perhaps one of the new play ideas which have been circling my head – written up into draft form, or even just solidified in story terms.  Or perhaps taking an opportunity to look back over one of my few first-draft projects and hone them slightly.

Inevitably, though, I find myself enjoying my imagined new-life projects far too much and taking myself off into my fantasy new world while achieving nothing and taking no steps forward in the real world.

It seems silly, really, to become too swept up in the details and nitty gritty of the grand schemes I have laid out post-Tx when right now, planning whether or not I’m well enough to make a trip to Borders to finish the last of my Christmas shopping or treat myself to some new reading material.

What I need is some focus, and that’s what I’m heroically lacking in.  I say “heroically” as I’m blaming it on my brain as a way of coping with ignoring all the negative stuff that’s inevitably swirling around at celebration times and the turn of a New Year.

Yes, it helps to bluff oneself with the concept that you’re looking after yourself in the long run, and right now while you’re recovering physically, any kind of mental exertion is good, whether its practical or dream-based.  At least that’s my story and I’m sticking to it.

There’s also the question of the “holiday season” as some loathsome people are wont to call it, which is arriving like a speeding train and is just as likely to derail any well-laid plans anyway, so it’s yet another excuse for butt-sitting and job avoidance.

Indeed, it seems fairly clear sitting here bashing away at the computer during the half-time break of the Sheffield Utd vs. Aston Villa game on the TV that the blog is just now as much a procrastination tool as anything else.

Or maybe – just maybe – forcing myself to sit and write my little progress notes of an evening is going to finally instill a little bit of discipline into my daily routine and lead me down the path of finally focused achievement.

Any takers?

So, in the grand scheme of things, this week has been a Good Week. 

Following last week’s major dip in form, interrupted only by a day of media insanity which appeared to coincide happily with an inexplicably good chest day, I finally appear to be getting a grip on a) the physical recovery process, with more energy, more internal resources and less time necessarily dedicated to sleep and b) the mental side of the game, which has seen me first acknowledge then work to accept my newly imposed limits.

In fact, my biggest challenge at this moment in time seems to be how to write a blog when covered in constantly interfering kitten.  Pepe, one of Mum and Dad’s two new additions (alongside sister Tio), isn’t happy about my paying more attention to the funny glowing box with movey-cursor thing and there’s something distinctly antagonistic in my fingers on the keys, it would appear.

It’s hard to type with a kitten biting your thumb.

As I improve I am working hard not to get too carried away with recovery and am relying rather heavily on K and my ‘rents to keep me grounded for the time being.

For the first time today I ventured out of the house under my own steam and wanted to do more but was talked down by K.  Dad has a Christmas party at work tonight and needed a lift there, but Mum had been to a Christmas party at work and was one over the limit, so I obligingly offered to run him into Town, from where I was planning to go to the flat and pick up some bits and bobs.

But, considering I’ve now gone two days without an afternoon kip (through lack of tiredness, not stubborn-streak staying awake), it fell to Lady K to suggest that perhaps racing round to the flat, up the stairs and back no doubt laden with odds and sods wasn’t the best way of testing how sustainable my energy levels actually are.

That said, it didn’t stop her urging me to boldly step back into Real Life by stopping at the chippy on my way home…

The point is, though, that as much as I feel like I’m striding forward at the moment and as positive and happy as that makes me feel, it’s important not to lose sight of what a tight-rope I’m walking just at the minute and to do what I can to minimise the risk of  a relapse.

Which means that while it’s important to know my boundaries, it’s equally important to identify them through gentle probing rather than smashing through them at a sprint.

The challenge now is how to ignore my natural instinct to plough ahead full-steam and instead to slowly reintegrate myself to life, the universe and everything.  And those of you who know me will be only too aware just how big a challenge that is.

I mentioned in the middle of last week having a bit of a to-do with Allied Respiratory, the new home oxygen service providers.

At that point, I was mildly full of grumble because I’d cancelled a hospital appointment and spent my entire Thursday waiting in for the oxygen engineer to call round when he’d phoned at 3.30pm to tell me he wouldn’t be coming because the job we’d asked him to do was a 2 hour job and he didn’t have time in his day to do it.

I’d remonstrated with him, and also pointed out the rearranged hospital appointment, at which point he agreed he could at least swing by and drop off a back-up cylinder for the flat and a couple of portables that would at least give me enough oxygen to make my trip to Oxford the next day.

One thing he said did strike a deep note of caution into my brain, though, when he dropped off the portable cylinders telling me I was “lucky” to get them.  How can an oxygen provider think it acceptable that a person entirely dependent on oxygen 24 hours a day is told it’s “lucky” for him that the company can provide it?  It’s unbelievable.

Further to that, when he told me he’d not be able to come that day, he committed himself to coming to do the job first thing in the morning.  However, when he arrived at the flat to drop off the cylinders, I said I’d look forward to seeing him in the morning and his eyes went blank and he clearly hadn’t remembered his “promise”.

In fact, he arrive at nearly 3pm the following day.  I’d gone off to Oxford for my check-up and my brother, who should have been making his way back to work in Canterbury, had stayed in my flat waiting for him.

On the whole, then, not a great start to my experiences with Allied.  I’d heard murmurings from other users that there had been problems, but hadn’t expected to discover them so quickly, nor to such an extent.

Apparently, they’re chronically short of portable oxygen cylinders.  Between the collective brains of myself and a few friends in similar positions to myself, we can’t for the life of us work out why this is suddenly the case.  Having taken over the entire oxygen provision operation, why is the service so chronically short of portable cylinders, when previously there was no problem at all getting hold of them under the old, GP-prescribed system?

Today, things have taken another turn, and stoked my ire yet further.

I spoke to Allied yesterday, explaining that I’d been forced into a move to my parents’ house and that I was now out of portables and had no back-up cylinder here.  I did manage to bring over my concentrator, but it’s not set up for use in multiple rooms here, which means that rather than being the hub of the O2 system as it is at home, it’s now in effect merely a static, bottom-less cylinder.

They told me that because of the change of address I’d have to submit a whole new load of oxygen request paperwork from my GP before they could process an order, as they couldn’t do anything without it.  Luckily, my GP practice is outstanding, and got straight on to it, dealing with them direct and putting in an urgent request to have the oxygen delivered that day.

I received a call from Allied in the afternoon, telling me that they wouldn’t be able to do the delivery today (yesterday), but that they could set it up for tomorrow (today).  I explained that as I was now out of portables, it would need to be in the morning if it was being delayed.  She assured me that she would put me down for an a.m. delivery.

Imagine my surprise (or sad lack of it, so cynical have I become in such a short space of time) then, when today saw no hint of an engineer’s call all morning and still none by 2pm this afternoon.

I phoned Allied.  It looks like the order had been booked on their system for next week, would that be OK?  I took a breath and calmly explained that no, that’s not really OK and today is what they’d agreed and today is what I expected.

She checked the order and told me that I could probably get the back up cylinders (that’s the large ones that sit in a corner or cupboard and are hard to move around) today, but that portable ones were unlikely.

I explained, as patiently and calmly as I could, that this meant I would be unable to leave the house until their next delivery.  She said she understood and she apologised.

Frankly, I think that it’s only my high levels of tiredness and low levels of energy that stopped me shouting down the phone this time, which is good because I don’t like to shout at people on the phone. 

I know it’s not their fault and they’re just doing their jobs from a call centre somewhere in Surrey.  But it’s hard not to be riled when someone behind a computer screen is telling you that you’re not going to be allowed to go out this weekend because they screwed up their bookings and now couldn’t supply your needs.

Even more surprisingly, they don’t deliver on weekends, so there’s not even any hope of getting anything tomorrow. 

To her credit, the lovely-sounding girl on the phone went away and spoke to the engineer working in my area today and chased up whether he had any spare portables “on board” which he could drop with me when he dropped the back-up off.  In fact, he does and I’ve now been assured he will.

But that just underlines the ludicrous nature of the service and the system they have in place.  Clearly, they have no way of telling what oxygen is where, they have no tracking system of cylinders, both full and empty.  The whole service is shoddy and I have no idea how they propose to rectify the situation, but something really needs to be done, and soon.

It seems hugely ironic that the day after I write an article for the Guardian preaching about making the most of the time I’ve got left, that I find myself house-bound at the whim and the mercy of an oxygen delivery system that doesn’t appear to know it’s portable from it’s concentrator.  To put it nicely.

I wait – not with baited breath, because that would be too much effort – to see what becomes of this afternoon’s assured delivery, and wonder how on earth I’m going to meet my increasing demand for oxygen as my chest improves on the new antibiotics and steroids and I want to get out and about more and more.

PS – as promised, following yesterday’s excitement, my article has been published on the Guardian website here, and the Independent interview is available here.

 UPDATED 01/12/06 19:00:

What a fuss over nothing.

The muppets in front of the computer screen may have been able to cock up the proverbial piss up in a drink manufacturing plant, but the engineer couldn’t have been nicer or more helpful.

We weren’t given an arrival time, and were getting somewhat anxious as 5 o’clock rolled around, thinking that they usually finish on office hours.  A swift phone call to Central again reveal he was on call all night, thought and that he would definitely be coming along tonight.

Just before 7 he called looking for directions from the top of the road (no one can ever find my ‘rents’ house) and walked in with one half-size back-up cylinder (half-size being slightly misleading considering it’s actually about 3 foot tall and REALLY heavy) and two of the nice little white portable cylinders (the ones that are actually light enough for me to carry).

When he asked if there was anything else he could do, I chanced my arm and volleyed for some more portables.  He said he wasn’t sure how many of the white ones he had, but he definitely had a load of the little black ones (the portable, but slightly heavier ones).  He toddled back to his van and returned with 2 more white ones and 2 black ones.

I also explained how it would be good to have a back-up cylinder upstairs as well as down, if that was possible, and he immediately went back out to the van to get me another one.

So after all the huffing and puffing of the last 24 hours with Allied at their call centre, I’ve ended up with exactly what I asked for – 2 back-up cylinders and 6 portables to replace my spent ones, all delivered to my new address.

But why did we have to go on the merry-go-round of phone calls we’ve exchanged since yesterday, where they’ve told me this isn’t possible, that’s not possible, I can’t have anything till next week, I an only have one back-up, I can’t have portables.  It seems like a chronic failure in communication across the board.

The engineer was so nice and friendly and completely accomodating – nothing was too difficult, he never once made a face like it might be hard to do something.  He brought everything in, sorted it out and helped with everything I needed.

Why oh why do Allied make it so tough on themselves and so stressful for the patients?

Quite before the media maelstrom that’s been hurtling around today, I spent almost all of yesterday feeling absolutely awful.  It’s remarkable when I look back with all the things I’ve done today that I wouldn’t have been able to even touch on today. 

In all since 7am this morning, I’ve done 3 phone interviews, 1 studio interview, 1 photoshoot and written a 700-word article for the Guardian website.  This time yesterday I was sat on a ward in Oxford hoping to goodness that the docs weren’t going to put their foot down and keep me in.

Yesterday morning I woke up with the worst headache I’ve yet experienced, all thanks to the veto-ing of my NIV due to the pneumo scare.  Not only that, but the CO2 levels in my blood had obviously started to cause havoc elsewhere and I found myself lent over a toilet bowl 5 minutes after waking up depositing whatever was left in my stomach from last night.

I haven’t been sick in a very long time, and I’d forgotten how unpleasant it was.  not only that, but without oxygen on, it left me gasping for air. 

I manged to find my way back to bed and do my IVs, which took a lot more effort than usual, and got pain killers down me with a banana to try to settle my stomach and help them absorb better. 

We had to leave the house by 9.30, so I forced myself up and out of bed, but my head was swimming.  Of all the things I’d meant to do before heading out, I accomplished at most 2 of them, and then only half-heartedly.

At Oxford, I had a session with my physio which saw me bringing up some of the nastiest stuff I’ve seen come out of me for a while.  Not only that, but my headache was refusing to go away and my exhaustion was creeping up fast.

The docs came round after my physio session and we discussed the pneumo/chest pain.  Considering I had a good night’s sleep (barring the morning doldrums), and the pain seems to have gone away in my chest, it would appear that it wasn’t a pneumo after all, just me jumping to not-entirely-illogical conclusions on feeling more acute than usual pleuritic pains in my shoulder.

We decided that the IVs clearly hadn’t done the job they were meant to, and so I’ve been put on an additional drug to marry with my Colistin, Meropenem.  Usually, Mero causes me severe joint pain, but we discovered last time I took it that combining it with steroids was usually effective in taking that element away. 

The only draw-back being once steroid leves go over 10mg (I’m now on 20mg) transplant becomes less likely, for various medical reasons too detailed to go into here.  But it’s only for two weeks and it’ll hopefully improve my lung function and exercise tolerance, so it’s got to be worth it.

Eventually, after a supervised first dose to make sure I wasn’t going to have a massively adverse reaction to the Mero, I got away from Oxford (chauffeured by Dad) just after 2pm, getting back home around 3.30pm in time for some shut eye before heading out again to stock up on portable oxygen cylinders from my stash at the flat.

After a “who’s got the keys” palaver of indeterminate length, we eventually got back in around 7 pm and I was shattered, completely exhausted and good only for sitting on the sofa and wiping out.

Although I did get a bit of a second wind in the evening, around the time Em phoned me to talk about the news and the reactions on the message boards, I was still in bed as early as I could be.

The most important part of my day, though, was in the change of stance on Neve, now that the pneumo had been discounted.  Going to sleep with her on, I drifted off into the land of slumber and only woke on a couple of occasions before my early-morning radio address.

It was remarkable and wonderful to wake bright and alert and with no discernible left-overs from a proper night’s sleep – no headache, no sickness, no nothing.

It’s paved the way for a wonderfully busy day, all of which has taken place within the confines of the house, with the exception of a quick trip up the road.  I’ll be back on here later, with a bit of luck, to outline where else you can see my distinguished self discussing life with CF and other interesting topics of the day…

Updated 01/12/06:

After a breathless day-and-a-bit of media storms, between myself and fellow CF Trust Ambassador Emily we have notched up 4 print articles, over half a dozen radio interviews and she bagged all the Telly attention (but then, she is prettier and much more of a draw than me…), not to mention the rest of the CF community’s coverage, which has included local news country-wide, This Morning, Newsround and forthcoming features in the Daily Mail other weekend magazines.

Articles featuring Em and/or I are available at the Guardian, Herald, Independent and Mirror and Emily also gets a mention on Nick Robinson’s blog on the BBC website.

Articles have also appeared in the Scotsman and Evening Times for our Scottish Brethren, thanks to work from Anders, a North-of-the-boarder friendly-type.

A week has passed since I ejected myself from Geoffrey Harris Ward in the Churchill in Oxford and my adaptation process has continued apace, not with 100% reliable or positive results.

I have to confess for all my jaunty little exploits that have made it up on to here, there have been a number of far less jaunty moments, and some which have had me fairly close to tears.

The interesting thing is the pattern into which life has settled over the past 7-10 days since I got back home again.  Oddly, although every day has been different, they all seem to have followed the same arc from morning to night.

First thing in the morning, once sleepiness has subsided and the world is in focus, I feel positive and upbeat and keen for the day ahead.  I wrap my head around the things I want to do for the day and assess what my energy levels are like and what I think I can realistically get through.  Then, after 2 different nebs, a physio session, some breakfast and a shower, I set about whatever it is within the confines of the flat that I’ve set myself to do.

By the early afternoon, it’s time for a recap on the benefits of sleep, and I get my head down for an hour or so, before stirring to do my IVs.  For a patch of about and hour or two after I wake, I’m recovered enough to pursue things I want to do before the early evening, when tiredness boardering on exhaustion begins to settle in and things become a bit more of a battle.

My chest will start to moan and complain about the strain of, you know, breathing for an entire 12 hours without any supplementary support from Neve (as I’ve Christened my NIV machine, thanks to K’s thinking and Em’s bright idea of making things less scary through anthropomorphism). 

 Joining in the fun, my stomach will announce it’s desire to be sated with a sacrifice like some built-in God of Food who will readily close up and not accept offerings should they not be timed appropriately according to it’s very own desire.

As my body protests, so my mind – and my mood – takes a dive.  The tiredness takes over my faculties for divining the logical and illogical in the world around me, the easy questions of everyday life become heart-wrenching, brain-busting trials of wit whereby turning over to Channel 4 can be the sum of a good 15 minutes worth of hard cogitation coupled with inner debate about the relative merits of watching Nothing Very Much on either this channel or that and wouldn’t-it-be-good-if-we-had-Sky thinking.

The spiral continues into the night and I’m plagued mostly  by the fact that I have to stay up until at least 10pm in order to administer my nightly third dose of IVs before I can retire to bed and the warm comforts of Neve.

(If anyone ever here’s me suggest that an NIV machine is either a) warm or b) comfortable or c) in any way vaguely pleasurable, I suspect it has become time to skip the medication and proceed straigh to a padded cell.)

The night’s are the hardest, as my protesting lungs (even after a second, or third, physio session of the day) do everything they can to make getting undressed and ready for bed the biggest chore of the day.  Breathlessness results from the most minor activity and washing my face and brushing my teeth become the greatest amount of exercise I’ve achieved all day.

And as I settle into bed, I have a tendency in my semi-conscious stupor, to dwell on the things my life has lost in the last few weeks and months.

Even now, sitting writing this, I can see how the spiral starts and escalates, I can pinpoint the moments when everything starts to move in the wrong direction and I can see how my thinking patterns work against me almost constantly.

It may, to some, seem as if I’m outlining “a day in the life” for a sympathy vote, or in order to make people reading this understand what I “go through” every day.  That is not my intention. 

What I’ve found with everything else so far in this chronicle of mine is that by writing it down and reading it back, in a public domain where there is no where to hide, I can force myself into examining my thoughts, feelings and actions in a way I never would in my own head.

By illustrating my point as if to someone who knows me not at all, I simultaneously force myself to see things from a different perspective, to get out of my own well of self-pity and understand what’s behind the changes in mood and strategic thinking.

Smile Through It, that’s what it’s all about – and if you know what it is that makes you stop smiling, you can keep your eye out for it and keep it at bay.