Archives: Writing

It’s taken me a bit by surprise (the whole thing seems to have wrapped up rather quicker than I expected it to) but I have this afternoon completed the official first draft of my screenplay! Am incredibly chuffed.

There’s still a way to go with it – I know for a fact that there are at least 3 scenes I want to revisit already, plus some minor points to fiddle with, but technically, I reached the point at which you write END on the page, which makes it a completed draft.

I’m hoping to have the 2nd draft done in a week or so with my minor tweaks and then to be able to print it out and comb through it in detail to come up with a 3rd draft that I’ll be happy to start showing people.

I’m happy.

Today I am tired. Today made no sense. I think it’s because I’m tired. But really, it made no sense.

I woke up this morning at 6.30am – that’s really early. Luckily, it’s not dark, because the clocks have gone back. So I woke up in the light. But it was still really early. I didn’t get much sleep last night. It was past midnight when the light went out and I then spent the next hour or so getting to sleep, where I then spent the next four or five hours dozing and waking every hour or so to readjust my position because either a) Neve was coming off my face, b) my shoulder was hurting because of the port needle or c) I was lying too much over on my chest and giving myself breathing trouble.

I woke up grouchy. I don’t think many people wake up at 6.30am happy, but when you’ve slept badly two nights in a row, coupled with not sleeping long enough two nights in a row, coupled with being on really high doses of the most drowsy-making drugs in the world (with the notable exception, perhaps of sleeping pills, which I suppose really ought to win the most drowsy-making award and if they don’t then they should really have a different name, or get their makers sued under trading standards) then it’s pretty hard to wake up at 6.30 in the morning without being grouchy.

I did my drugs. This involves (at the moment) doing about 10-15 minutes worth of injecting solutions from a syringe down the tube then connecting up a big bubble-thing which works like a drip, but in a different way. (That doesn’t make sense, does it? If it works like a drip, then it must be a drip; if it works a different way then it’s not like a drip, is it? Told you today didn’t make sense.) That takes an hour to go through, then it’s a couple of quick syringe squirts and hey presto, all done.

So the whole shebang took me up to about 8am. Every Monday morning, I have a delivery of portable oxygen cylinders to give me enough to move around for the week when I want to go out. Invariably, the delivery driver arrives at 9am. Looking at the clock, tired and grouchy, I decided I didn’t want to go back to bed for an hour just to get woken up as I settle into a nice sleep to have to get up and answer the door. So I try to occupy myself to keep myself awake until 9.

Dutifully, the lovely Brummy gent turns up and drops of my new cylinders and whisks away my old ones. Following which I retire to bed for a catch-up nap, aware that I have to be up no later than 11.30 to get ready to go to the hospital for a physio appointment and drug-level check.

I clamber into bed and strap on my Neve-mask, only to discover that the condensation in the mask has done something – I don’t know what and boy, do I wish I did – which makes something on the mask make a really loud, annoying clunking sound every. Single. Time. I. Breathe. In.

Annoying? Slightly. Grumpy-making? Exceedingly.

After, oh I don’t know…. 5 minutes of trying, I give up and clamber out of bed, thoroughly bad-mooded for the day. I wash the mask up, in an effort to have cleared whatever the problem is for tonight, and sit myself quietly on the sofa to start reading Ian McEwan’s Atonement, which I’ve finally wrestled from K and am keen to get through before having the whole story spoiled for me by people who’ve seen the movie.

Bizarrely, all the time I’m sitting reading, I’m perfectly awake and alert, despite having had not enough sleep and being beside-myself with tiredness when I’d gone back to bed. As soon as I got up from my perch, however – to make tea, to fetch things, to do anything at all, really – I was exhausted. My chest was heaving, my legs felt like lead and my eyes couldn’t have been heavier if they’d entered a Weight Watchers programme and won the prize for world’s worst dieter by gaining their own body-weight three times over.

I was not a happy bunny.

By the time K got up I was happily reading away, but ready for some morning physio, which is never fun at the best of times but when you’re tired it becomes a peculiar kind of torture – long, drawn out, unpleasant, occasionally painful, sometimes exhausting, often breathless and very, very hot (this morning, anyway). Needless to say I ended in a mildly worse mood than I start – impressive, huh?

I did manage to lever myself into a bath and chill out for a fraction of an hour before throwing some clothes on and getting ready to head off to Oxford, only to be phoned and told that the physio I was supposed to be seeing had broken her tooth and wouldn’t be able to see me today, so could I come Wednesday instead? Of course, I said. Why not?

But here’s the weird thing: having not gone to Oxford, which I took to be a blessing on account of my overwhelming tiredness anyhow, my body then decided that actually, it was feeling pretty happy and perky. After 5 hours semi-sleep, a 6.30am start, a morning of trial after mood-blackening trial, I found myself suddenly feeling an urge to sit at my keyboard and write – to carry on with my screenplay with which I have been having so many recent tussles. (For “tussles”, read: “hit a structural bump which sapped all creativity and forward-momentum and left a big black mark against my 5-page-per-day copy book for the last month or so”)

So all afternoon I’ve been beavering away on my screenplay without so much as a care in the world, pausing only for the occasional break for food, water or the odd episode of Lost (just keeps getting better).

I have no idea what my brain is doing with itself, nor what my body is up to at the moment. My chest feels like it’s improving, but my sleep certainly isn’t. My mind is lost in a mire of lethargy which saps any mental strength and positivity right out of it, whilst still apparently providing me with enough drip-fed muse to be able to carry on doing the kind of creative writing which is usually the first thing to desert me when I’m feeling rubbish.

Literally nothing about this day is making any sense to me right now. But I guess that’s just because I’m tired. Can you tell?

I’m not really sure at the moment, if I’m honest.

My body and my mind are all over the place and I can’t decide what to do with myself from hour-to-hour, let alone day-to-day.

Frustration is playing a key role in whatever I am doing at the moment, though, driving me to distraction.

For the last week or so I’ve been sleeping incredibly badly – not being able to get off to sleep and then waking every hour or so until the early hours when it tends to increase to to a whopping 20mins of sleep at a time.  It’s been driving me bonkers.  Also, of course, it’s left me with very little energy to do anything with myself all day.

Once I’m tired, I’m also absolutely horrible to be around.  I’m sure most of us aren’t at our best when we’re lacking a bit of shut-eye, but I know that when I’m sleepless I’m at my very, very worst.  For all the days K’s spent laughing at me and with me when we both get the giggles when we’re tired, I’m sure she’s now found out that when I’m really tired giggles are nowhere to be found.

Lack of sleep also causes more and more worries as well.  I’m well aware of the fact that it’s when our bodies are at rest that they repair themselves and set themselves up for another day.  As you’ll know from the more recent blogs, I’m also increasingly aware of the frailty of my body and the desperate need it has to keep itself ticking over.  Missing out on crucial rest time bothers me big-time because I know how precious a resource it is.

More than all of that, though, the more tired I am the more frustrated I get with myself and with the things around me.  My energy levels are so low that doing anything other than sitting and surfing the ‘net causes me to feel like I’ve been running around a football pitch for hours.  Without the rest it needs, my chest will start to moan and complain if I do much more than make a cup of tea and I can really feel my auxiliary muscles working overtime just to keep the oxygen flow going through what’s left of my lungs.

I’ve been struggling for the last couple of months with pain in my back and neck where the over-worked auxiliary respiratory muscles are tensing up and causing all kinds of different, unpleasant aches and pains, which in turn makes it harder to sit properly or carry myself as I should, which only then serves to exacerbate the problem with my back and neck muscles.  It’s the very worst of vicious circles that no one seems to have identified a way out of yet.

There are so many things I’d like to be doing with myself at the moment, projects I’d like to be working on, writing I’d like to be doing, but it’s the most I can do to get through a day without going mad at the moment.  My brain certainly doesn’t feel switched-on enough to achieve much beyond the occasional email.  I don’t think I’ve had a creative thought-thread for a couple of weeks now, which really gets me down.

Still, it can’t all be doom and gloom – there’s good things in the world. (Best not get on to last weekend’s sport if I’m looking for sunshine, eh?).

My bro was back for a couple of days over the weekend, which was really nice – he’s away so much doing this, that and the other that it’s been really good to see him and catch up a bit.  He seems really happy in what he’s doing, which is so good to see.  I get a real kick out of seeing my family and my friends doing things they really enjoy – I suppose it’s a kind of vicarious pleasure that I’ve lived with for a while now and I have always felt it most strongly for the things my bro gets up to.  If he’s happy, I’m happy for him.  And he’s always happy, because he’s that kind of bloke.

I know I could be doing a lot worse, too.  My chest isn’t 100% – an understatement, I suppose, of rather dramatic proportions, but then everything is relative – but it’s holding on there for the most part.  It could be much worse and I could be properly laid-up, which I’m not, so I should really not be complaining too hard.

I suppose that when frustration bubbles up it’s often hard to see the good for the bad – the wood for the proverbial trees, as it were – and it’s all too easy when tiredness attacks to let it drag everything down with it.  Positivity is a precious resource in and of itself, so I suppose what I really need is just the energy to go and mine some more of it.

Nothing really changes in my life these days – it’s getting harder and harder to find something new to write about that’s not just droning on and on about how hard things can be, or what minute fluctuations my chest is taking at the moment. So I figured that if I’m not up to making sweeping changes in everyday life, the least I could do was to give the blog a bit of TLC.

So here we have it – the all-new SmileThroughIt, courtesy of the lovely people at WordPress (forr all your blogging needs!). Hopefully, it makes the whole thing a bit easier to read – I was surfing the other day and saw the page for the first time in ages and noticed just how SMALL the font size looked on the front (I only see the “back end” of the page, which is all fresh, clean and white, totally different to the published version). It also, I hope, makes it easier to navigate the old posts, or the most recent posts, as well as seeing when I’ve published.

Anyway, as far as the “me” update goes… well, nothing’s changed really.

I say that, of course, but there have been things going on. It amused me last week actually, when I was catching up via text with a friend of mine who’s got himself couped up in the Big House (read: hospital) and he was asking what I’m up to at the moment. I said I’m not doing anything these days, not really up to much. Apart from still doing CF Talk. And the work I’ve got going with Live Life Then Give Life. And talking to the campaigners behind My Friend Oli. And the odd bit of writing.

I suddenly found myself looking back over my text wondering what, indeed, the Roman’s had ever done for us. (Apologies to Monty Python). In fact, said friend said as much in his reply. Told me I clearly didn’t have time to work, even if I was up to it physically.

So yes, I think to myself, nothing ever changes around here, but I’m still finding myself pretty busy. Saturday was a blessed day of nothingness, somewhat of an oasis after a busy week, which had been draining not just physcially, but not helped my the mood swings and negativity flying about.

Sunday we popped over to K’s ‘rents to say hi and for K to raid their loft to try to find some old books of hers to help with her college course. K being K she’s decided not to do the simple, middle-of-the-road, easy-as-the-proverbial-pie kind of project that they expect their students to do, but rather to launch into a semi-professional study which, all things being well, she is hoping to then go on and get published if we can find the right journal for it. The only thing is, it means she needs to wrap her brain back around the statistics info she learned way back when. I am, naturally, completely useless for this as I can’t really count much higher than 10 and ask me to do division and I’m stuck beyond halving something.

While we were there we were, I think it’s fair to say, attacked by our tiniest niece and nephew. I think it’s also fair to say that they’re not going to be the tiniest for long. The little one is nearly as big as his sister now, despite being 13 months younger. In a reversed nod to Animal Farm, he’s just discovered Two Legs Good, Four Legs Bad – it’s so much easier to cause havoc when you have your hands free to grab, hold and throw things while you move. His sister, meanwhile, is mostly contented jumping on me and her Auntie K.

Today I even managed to venture across town to pick up my own prescription, something which I’ve been relying on Mum and Dad for for a while now, although when I told Mum I’d done it tonight she told me off for not asking her to do it (you can’t win sometimes).

Just writing all this down, I’m starting to realise not only that my life is still pretty full and varied, albeit in a different manner to that which I was used to, but also why I started this blog in the first place. More than just a place to air my frustrations, or my minor triumphs, I began writing these posts nearly a year ago in the hope that putting it down in words might help remind me that life’s not as bad as all that and if I only take the time to look around, I’ll see all the wonderful things I have in my life: my family, K and her family (my second family, really), my friends: a network of people who never let me forget myself. More than anything, maybe I’ve reminded myself to Smile Through It.

I feel like I should be doing a great, big week-long catch up on here, but I don’t seem to have the impetus to go back over the whole of last week and work out what happened or didn’t.  I seem to remember largely feeling pretty knackered, thanks, no doubt, to the IV’s.

The good news is that they really did the trick and we got on top of the infection before it could develop properly.  My CRP at the start of the course was at 89, which had reduced to just 33 after 7 days, which is good going.  The extreme fighting going on is probably the major cause of the tiredness, too, alongside the drug doses.

I also feel like I should be entertaining you all with a blow-by-blow account of my troubles with Sky, but I think I’m so tired of all this malfunctioning technology and maladjusted people on the end of helplines that I can’t even bring myself to muster up a random thread of expletives to describe the situation.

The IV’s finished on Tuesday and I was up at Oxford yesterday for a quick post-IV once-over.  The best news of the 2 weeks (and recent past) is that my weight is now up to a rather impressive 54.4kg – the heaviest I’ve ever been.  I’m hoping that I can keep it on and keep adding to it even as I slowly start to reduce my steroids.   My lung function had improved greatly, too, back up to 0.8/1.3 after dipping down to 0.6/1.1.  It may not sound like much, but when you consider that’s a  25% drop in lung-function,  it goes to show why I may not have been feeling my best.

I have continued, on-and-off, to look at and sporadically work on new projects and a couple of old ones, although clearly a lack of internet access is a bit of a hindrance to most productivity.  Of course, being offline and having nothing else to use my computer for, you’d have expected, I guess, that I would make some significant progress on the screenplay.  Rather impressively, however, that’s not the case at all, and it’s sitting just as untouched today as it was when I lost the internet connection 10 days ago.

Only I could manage to ignore a chance to turn a technological disadvantage into an advantage – looking the mis-guided gift horse in the mouth, as it were.

There’s not much else to add, really – I suppose it’s been a bit of a boring week or so, or certainly that anything interesting that has happened seems far too long-winded for me to dredge back up right now.  I’m still tired.

Ho hum, let’s keep rolling along and see what tomorrow brings.  Sorry for being boring today.

This isn’t actually a proper post, but I do have my internet back (more on that tomorrow) and thought I’d point you here to a letter I had published in the Guardian Media Section today.  It’s not often I big myself up, but I’m really rather proud of this chappie.

I’m in a very weird situation with my body at the moment.

On the one hand, it’s reeling from the effects of the infection and is suffering the usual IV hangover that comes with the first few days of pumping extremely high doses of pretty hard and powerful drugs into your system.  On the other hand it’s simultaneously feeling a huge surge of energy and general boost that comes from having large doses of steroids crammed in on top of everything.

It can’t decide whether to be super-tired or super-energised and it’s seemed to settle on some sort of manically-driven half-way house, where I feel like I can take on the world if only I could have a 10 minute cat nap first…

Still, the main thing is that whatever’s happening, it’s definitely doing the right thing.  Without a doubt I feel hugely better than I did earlier in the week, tiredness aside, and I know that if my appetite is returning (or back with a vengeance) – even if it is steroid-related – then I’m definitely on the mend.

I’ve never been particularly good at recognising (or acknowledging is a better term, I suppose) the signs of an on-coming infection, so I’m quite pleased not only that I picked up on it properly this time, but reacted in the right way by getting myself to Oxford as soon as I could and not just waiting around for my next appointment, by which time it could have taken much greater hold and really started to kick my butt.

I was back at Oxford yesterday for a physio session, which is also a cunning ruse on the part of the team to give me a quick, unofficial once-over to see if there has been any improvement.  They think we don’t know these things, but we really do.  Still, cunning or not, it was reassuring to know that the team all felt I was looking better.  Being multi- rather than mono-syllabic must have helped.

Strangely, this period of minor health-hiccup has coincided with a bright spark of inspiration and I’ve finally broken the back of the script I’ve been working on for the last few months.  I’m now 70 pages in, about 20 pages from the end – at a guess – and it’s all coming together beautifully.  I actually can’t wait to sit in front of the computer and bash out the next six pages each day and often feel like I could do more, had I the alertness to keep focused for long enough.

Still, I’m hoping to have finished my first draft by the end of the weekend and to have redrafted within the week.  The stages between my first and second drafts are very quick – it’s pretty much a read through and polish with a couple of additional scenes, at which point I’ll then sit and work through it much more slowly and may seek out a couple of opinions from people who will give me good, honest notes.

Funnily enough, a great friend of mine for whom I am nominally writing the script, happened to text me on Wednesday to see how I was doing (health-wise, not script-wise) and it was the same day that the whole things became clear and concise in my head, so maybe there’s a spooky little connection thing going on in my head there, somewhere.  Whatever it is, I’m really enjoying it.

The good news is my tiredness seems to have lifted, mostly. The bad news is that I woke up this morning with a roaring headache and couldn’t shake it for most of the day.

I’ve noticed that being chronically ill gives you a bizarre form of semi-hypochondria: every little tweak of a muscle, snuffle or sneeze suddenly seems laden with horrible possibilities.

This morning’s headache, for example. More likely than not, it was a simple, common or garden headache of the type we all wake up with from time to time. To my slightly addled brain, however, it could be a recurrence of the old CO2 headaches I used to get before I started on my NIV overnight. The issue there being that since I’m not actually using overnight NIV, it would imply that my lungs have deteriorated further and the NIV isn’t working hard enough to clear the CO2 from my lungs while I sleep.

The chances of this being the case – considering there are no obvious other signs of major chest complaint (no significant drop in lung-function, no increase in volume of sputum etc) – are pretty low, but it doesn’t stop my brain working the scenarios over in my head almost constantly.

Most importantly, I guess, is the fact that I can see my slightly skewed look at things and take a bit of a step back from it. I’m not fretting my head off about it, but it is still playing on my mind a little. I’m sure I’ll sleep soundly tonight and wake up tomorrow with no problems at all, and I’ll feel foolish for even letting the thought cross my mind. But when you’re sitting on such unstable ground, you get a little hyper-sensitive.

I shall be trying to get back into my exercise regime again tomorrow, having missed almost a week now through tiredness. I shall also be attempting to get back into the screenplay again, having failed to match yesterday’s 10 pages with any pages at all today. I’m a bit hit-and-miss, me.

On the plus side for today, K’s little 2 year-old niece and 15-month old nephew (I’m sure I’ll have got that wrong now, I bet I get shot for it, too) came over for a visit today, which was just gorgeous as they were both in such fantastic moods. Even though I was feel really rough with my head banging and pretty short of breath, I managed to have a lot of fun. Luckily, I could play mostly sat down on the sofa or the floor and not move around much (I left policing duties to K and their Mum, who would race after the little one as he crawled off at top speed to reek havoc in other rooms).

I spent most of the time being either a fairy or a ballerina. I’m not quite sure what that suggests our niece thinks about me, but I’d like to think it means she understands that I’ve got a wonderful imagination, just like her.

Even when you’re feeling tired and rough, there’s something truly infectious about children’s laughter – it reminded me what I used to love about working with the Youth Theatre. Having a child’s simple outlook on life is so rare and so delightful, to focus 100% on what’s going on right now with no thought for the history or what comes next.

With two children as gorgeous and laughter as infectious as theirs, it’s impossible to say I’ve had a bad day.

“We do not inherit the earth from our parents, we borrow it from our children.”
Native American Proverb

There must be something about being tired and a little bit down on yourself that sets the inspiration glands working over time, as I napped this afternoon and got up to find myself sat in front of the computer churning out 10 pages of my screenplay.  Even I’m impressed.

I have an unnatural love of Aaron Sorkin.  It’s really not very becoming for a man of my age.  I have a kind of giggly school-girl relationship with everything and anything he does.  Oddly, though, not many people actually know who he is.

Most people have never heard of him and fewer seem to have seen his TV shows.  The only thing most people know him for is A Few Good Men, the Tom Cruise/Demi Moore/Jack Nicholson movie, and even then most people only know it when they hear Nicholson bellowing, “You want the truth? YOU CAN’T HANDLE THE TRUTH!”

He wrote that.

He went on to create and write the immensely under-rated Sports Night, which ran for 2 seasons and 40-odd episodes in the States a decade or so ago, starring some proper actors who went on to big things in Six Feet Under and Desperate Housewives, but never really took off.  It got buried in the schedules on ABC1 over here a couple of years back, but I don’t think anyone noticed it.

After that he hit the big time (at least in the States) with the unbelievably brilliant West Wing, probably my all-time favourite TV show and multi-Emmy award winner.  Sadly, English audiences never really took to it and after the first series was broadcast to critical acclaim but rubbish ratings on Channel 4 it got shifted and bumped around the schedules on E4, More4, Another4, Someone Else’s4 and other such channels.

It was, however, consistently the best thing coming out of the States for 3 seasons, dropped a little in the 4th just before Sorkin left.  It carried on for another 3 seasons and was cancelled last year, ironically after its best season since Sorkin left.

So what did he do next?  The master wordsmith, the writer I most admire, the man, the myth, the legend went and created Studio 60 On The Sunset Strip – a behind-the-scenes comedy-drama about working on a weekly live sketch comedy show for a fictional US Network.

It’s inspired, sublime and completely riveting – I love the whole thing to pieces, even before you add in to the mix Matthew Perry (ex of Friends) in a role that let’s him loose with his very real talent, and two of the West Wing’s best regulars in Bradley Whitford and Timothy Busfield.

The only problem with watching the series unfold week-by-week on More4 as it is at the moment is the horrible knowledge that comes from following TV production in the United States.  You see, Studio 60 is SO good that the network (the real one, not the fictional one) pulled it after one 20-episode series.

Bummer.

Which leaves the tantalizing question of what it did wrong to get cancelled.  All shows have their bad weeks, especially when you’re working in the American system where they write the shows as they go (as opposed to the UK where all but the longest series like Dr Who or Robin Hood go into production with all of the scripts in almost final form), but Studio 60 has so far, in 5 episodes, hardly hit a bum note.

Did the American audience just not go for the show?  Did they just not carry on watching?  Or does it suddenly, mid-season, get completely rubbish.

I’m a Sorkin addict – I’ll watch anything he does because I think he’s one of the most talented writers on the planet.  And I know I’ll keep watching this to the bitter end (and you know already that the ending’s going to be bitter), but it’s kind of turning into car-crash TV, to be watched with your fingers over your eyes from behind the sofa.  Because you have to imagine that for a show this good at the start to get canceled after a single series, something BIG has got to go wrong with the quality of the output somewhere in the middle.

Ah well, you can’t win ’em all.  And even if it does get rubbish, I’ve got 115 hours of The West Wing on my DVD shelf to give me my Sorkin-fix.