Yearly Archives: 2007

Today, I have felt good ALL DAY.

It’s a mystery where it’s come from, and I don’t harbour much hope of it lasting into the weekend, such is the nature of my up-and-down life at the moment, but damned if I haven’t enjoyed it today.

I woke up this morning after a good night’s sleep (which is rare enough) not feeling horrible.  As I plodded around the flat after rousing myself from the bedroom, I waited for the inevitable on-set of hideousness which usually hits about 20-30 minutes after I get up, but it never seemed to materialise.

I had the smallest glimmer of a headache after doing my morning physio session, but I hurriedly popped some paracetamol and ibuprofen and by the time I’d done my nebs it had passed, never to return.

We were joined, late morning, by our little niece and nephew on a spur of the moment visit with their mum.  There’s really no better way to start your day than with the fun and laughter of a pair of adorable children.  I even had enough energy to police the tiny terror as he rampaged his way around the flat – a job that’s normally delegated to K or his mum.

In fact, he didn’t cause too much chaos being mostly occupied as he was with emptying the fruit bowl and putting it all back again, before deciding to re-home most of its contents around the living room.  We’re still finding oranges in the most unlikely of places and I’m sure we had a lime earlier, too.  His main occupation after fruit picking was wall-drawing, but we managed to get away with just the mildest hint of blue in the hallway, largely down to the grown-up party-poopers who kept spoiling the fun.

Once they’d gone – with the elder of the two climbing backwards down the stairs (all 18 of them) on the way back down the car park, cheered on by her little bro who would doubtless have been counting them down if he had any concept of numbers – we had time to chill a bit and grab some lunch before I ran K to the docs for a quick hello.  From there, since it’s just down the road from her ‘rents, we stopped in for a quick cuppa, which is lovely because it’s a good 20 minutes from our place and we don’t get to do it very often.

When we got home, another of our friends popped over, enjoying his day off, and while K busied herself baking in the kitchen, we sat through Fantastic Four: Rise of the Silver Surfer.  It was awful.  Not just not very good.  It was abominable.  Like the snowman, but with less fur.

Mr S, who brought it over, had refused to see it at the cinema on the basis that he was sure he wasn’t going to like it, so thought it would be amusing for the two of us to sit through the DVD together on the basis that we’d both spend most of the film shouting obscenities at it for being so rubbish.  We, unfortunately, share a few friends who suffer under the delusion that it’s actually quite good and would be very upset to hear us bad-mouthing it all the way through, so this afternoon proved very useful for both of us.

Seriously, though, it’s AWFUL.  Don’t touch it.  Not even for the kids.

Since then, I’ve managed my neb and second physio session and nebs (lots of those, these days) and am still – touch wood – seemingly going strong.  Dinner shortly, then a catch up on last night’s telly, methinks, before hitting the sack for what I hope will be another bonza night of sleep.

You never know these days how long the ups are going to last, but I seem to have perfected the art of making the most of them when they are around.  It’s good to feel good.

That’s what I want to know.

It’s all very well this daylight hours stuff, with your mornings and your lunchtimes and your “after” noons, but wouldn’t it just be better for everyone if the day started at 6 o’clock in the evening?

OK, granted, the answer’s probably no, but I wish it did.  6pm is the time of the day – not before, not after – when my body decides it’s OK to be human.  For weeks now my daily routine has consisted of playing passenger on the journey my chest takes from grouchy in the morning through surly at lunchtime to grumpy in the afternoon, before it settles down and lets me get on with things from the time the first news headlines are read out.

The problem being, of course, that by six in the evening, there’s no “things” to be getting on with.  Anything even remotely related to the “real” world is out of the window because “normal” people go home at 5 o’clock, the inconsiderate beggars.  Anything creative is pretty much pooped on because just when you get into your stride, dinner turns up – not that I’m moaning about dinner, you understand, since it’s about the most I manage to eat all day at the moment, so I need it all the more.

What I’m left with, then, is basically, the ability to sit and watch telly without feeling rubbish.  I suppose, really, I should be happier than I am that I get any sort of grace period in the day from feel awful, but I am starting to resent the fact that the very time everyone else is shutting down for the evening, I am just starting to rev up.

I’m even working against K, who, like everyone else, is all ready to snuggle down on the sofa whilst my body’s telling me to get up and do something useful.  About the only useful thing I’ve managed to find to do is the washing up, so at least the kitchen looks all right.  I guess.

Thank heaven for small mercies, they say, and I do, everyday.  But sometimes you do just want to bash “they” in their stupid mouths for being so flippant about such bloody annoying things.

I’m not ranting, really I’m not, it’s just that if I was going to be granted a window of energy in the day, I’d rather choose sometime when I might be able to make some decent use of myself, or even just be able to have a coffee with a friend or visit a shop.  (First person to mention 24-hour Tesco gets a spatula somewhere it shouldn’t live.)

“They” also say beggars can’t be choosers and I suppose in these days of low energy and even lower expectations, I can’t really moan about being afforded three hours of feeling vaguely normal of an evening.

Not when there’s so much other great stuff to moan about…. But that’s for another day.

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.

So it’s been a rough week.  My mood over the last five or six days has been up and down more times than Billie Piper’s trousers in an episode of Diary of a Call Girl (which, by the way, is so atrocious I beg none of you to waste 30 minutes of your preciously short lives giving it your attention).

It’s a struggle to keep yourself moving forward when you don’t know how you’re going to feel, physically, mentally or emotionally, from one moment to the next.  Right now, for instance, I’m feel strong, confident and happy.  Had I written this earlier this afternoon, it would have been a completely different story.

Therein lies the problem, really – how do you deal with a physical and emotional state that’s ever-changing from hour-to-hour?

If I was feeling permanently down or upset, it would give me something to focus on, something to seek to improve or seek help with.  If I felt permanently tired and exhausted, or chesty and rubbish, I could get on the phone to my team in Oxford and get them on the case.  But I don’t feel permanently anything, other than permanently changeable.

The plus side is, of course, that with all the downs come all the ups.  I know that when I’m feeling miserable, I’m more than likely only a couple of hours away from feeling OK again and when I’m feeling chesty, I’m only a physio session and a nebuliser away from being comfortable enough to make a cup of tea.

It’s the endlessness of it that’s starting to wear thin, though – the relentless ride through peak and trough which starts to grind away at the inner reserves one builds up over time to deal with the regular lifts and dips of life.

I feel like I’m slowly losing a sense of “me” – like I’m losing touch with the essence of who I am because I’m being subsumed by a constant need to “cope”, to get by, moment-to-moment from each new challenge to the next.  I don’t have room to let myself breathe (no pun intended), to stop and just plateau.

I don’t know if maybe there’s a sense of a time-pressure that still hangs over me, like I need to make the most of things while I can in case the day never comes when I get carted off to theatre for my new lungs and new life.  Since, physically, I’m seeming to be able to support myself in doing a little bit more at the moment, is the frustration coming from not being able to do quite enough to satisfy myself that I’m making the most of things.

If I’m honest, I don’t think that’s true at all, but there’s so much going on at the moment that I’m not entirely sure what’s right, what’s wrong, what’s real and what’s imagined.  I can’t put my finger on anything that’s making things better or worse and I can’t identify what it is I need to do to stop these endless fluctuations of mood and manner.

I suppose, though, that no one does.  I’d be a rather remarkable person if I knew to solution to all of my problems.  Finding the way out of the mind’s maze is the journey that makes the end all the more valuable.  But when you’re staring at a hedge with no sense of direction, it’s not much comfort to know it’s a shrubbery for learning.

I’ve taken a real step back over the last week or so, not so much physically (thank goodness), but mentally.

I’m all too aware that moods change on a regular basis and that it’s more than possible to be up one minute and down the next – that changes in the tone of life are rarely long-held and that normality will be restored with time.  But right now things just seem more difficult than they have been for a while.

I’m not entirely sure what kicked it off, although I suspect it was accelerated last Monday when I didn’t go to the cinema.  It seems like a strange non-event to become a catalyst for a wave of negativity, but it seems to have encapsulated a lot of hang-ups all in one go.

I was supposed to be going to see a flick I’ve wanted to see for a while with a friend of mine who had the week off, who then had to cancel as he’d promised himself to another mate for his birthday all day and couldn’t swing the time for the movie.  It wouldn’t have been much of an issue in the past, I’d have just gone along on my own.  But I realised that I had neither the strength nor the confidence to face going to the cinema by myself any more.

From there, things descended down what I suppose is a fairly inevitable path of reassessment of what’s going on in my life and unpleasant realities creeping into my consciousness again.

All of a sudden my inner-eye has switched focus from what I am still able to do with myself from day-to-day to what is now beyond me.  All I seem to be able to focus on is what I can’t do rather than what I can.  And there’s a lot more things that I’m unable to do than things I can still do.

Everyone has these periodic reassessments of life – where you find yourself taking stock of where you are and how it compares to last year, how it compares to where you thought you’d be, how it compares to where you want to be.  And everyone inevitably faces battles against what they expected and what they find – it’s the way life works that we almost never find ourselves in precisely the position we would like to be in.

Still, I can’t seem to shake the dark cloud that’s descended on me again, dragging everything around me into a mire of misinterpretation and moping.  I don’t like this me, I don’t like being so downbeat about everything and struggling to appreciate all of the wonderful things I’ve got in my life.  But try as I might, I can’t see the light through the dense forest of overwhelming bleakness.

Even the simple joys of spending time with K’s nieces and nephews has been taken away this week as they’re all coming through the early-autumn cough and cold season.

I’m trying so hard not to let myself get beaten down by the hard stuff and to enjoy the good stuff that’s still around but I just feel so bitter and resentful and angry with the world sometimes, but I’ve got no outlet for it.  I don’t have the energy to shout and rant and rave and let it all out.  I don’t have the energy to take myself off for a cathartic drive around the back roads like I used to.  I don’t have the energy or the inclination to do anything to help myself out of my funk and it makes me even more angry – with myself and with my situation.

It’s a vicious circle and I know that I’m helping to perpetuate it by allowing myself to wallow in my unhappiness.  I just don’t know how to take myself out of it at the moment – I can’t see the proverbial wood for the trees and I can’t remember what cleared my head of this fog last time.

The one hope I do cling to is that I know I’ve been here before – I know I’ve felt this bleak, dark blackness and I know it’s gone away, so I know it’s beatable.  I just can’t remember how.  And I hope like hell I’ll find the trump card soon.

PS – I’ve mixed so many metaphors here you could make a cake, so I apologise.  It’s not the kind of post I feel like re-reading to spell-check or clean up, though, so we’ll just have to live with it.

Hurrah!  I finished the first cut of the Live Life Then Give Life ad last night and I’m really pleased with it.

Ironically, after spending a couple of weeks picking and piecing things together (on and off), the actual picture edit didn’t take me that long, once I’d got to grips with the tools.  What actually took the time was the 15 seconds of titles at the end, which required 3 separate, fully-rendered images created in a separate program and imported into the editing software.

You always know you’re in trouble with a piece of software when you open it’s electronic user manual (it’s another one of those which doesn’t come with a hard-copy version as it would, presumably, take up a whole book shelf) and it says,

“Because LiveType is a creative tool, documentation can only go so far in describing its
potential…In the end, you are limited only by our own creative vision, and the way to push the limits of LiveType is to jump in and start creating”

Or, to paraphrase in more precise language: we’ll tell you what the buttons do, but then you’re on your own.

And in case no one reading this blog has noted it in the past – I’m not very good at being on my own…

Still, soldier on I did and churn out something fairly brilliantly acceptable I did, too, if I do say so myself.

Seriously, I’m actually really happy with this as a first cut and I’m keen to show it to the rest of the gang at Live Life Then Give Life to see what they make of it.  Once I’ve got their feedback, I’ll have to pull my socks up and launch myself into another cut of it, no doubt killing some of my creative babies on the way, but such is the world of film – it doesn’t pay to be precious.

I’ve taken a bit of a leap in second-guessing people’s level of understanding and how quickly they’ll marry the intentions and the images, so it’ll be interesting to see whether or not it works of if I, having been so close to the material for so long, have made some major assumptions which stretch things too far.

We’ll wait and see and I’ll report back, no doubt.  Watch this space.

I’ve spent most of my day today sat in front of my shiney mac edit suite working on cutting together a pilot ad for Live Life Then Give Life.  I’ve been working on it, on and off like most things, for the last few months and we finally got all the footage in the can last week, with thanks to the wonderful Rheya who shot all the video for me.

This is the first time I’ve used my Final Cut Pro system to edit anything with a purpose, beyond toying around with it.  And boy, is it a steep learning curve.

The whole thing comes with bundles of documentation to go with it, ostensibly a guide-book, but it’s the kind of program where reading the book actually doesn’t do a whole lot to help you get to know the software – the only way to learn it is to just throw yourself into it and see what happens.

Patient as I am with technology(…), it’s managed to make even my cool-headed, even-tempered approach a little fraught at times.  It’s hardly surprising, though, since the whole edit suite is a package of 6 different programs, with an instruction manual 4 VOLUMES long – and that’s just for the video editing program.  All the other programs, like the soundtrack, titling and colouring software don’t have hard-copy manuals, only electronic copies within the software installation.

So I’ve been bumbling and fumbling my way through the most basic of practices, quickly establishing that everything I do has a) at least 3 other ways of achieving the same thing and b) they’re all quicker and easier than the one I tried first.

I’ve also discovered that a) I don’t know as much about this software as I thought I did at first and b) my brain isn’t big enough to learn all the things I need to learn in a single day just to keep up with the pace of the work I’m trying to do.

Similarly, it has emerged that a) everything in the instruction books is written into progressive lists of steps from A-X and b) it’s really hard to shake the habit of working through a whole day in list form.  And c) my brain is still at overload point.

Still, the ad is looking pretty good.  I had a bit of a mad one this afternoon, when I frantically text a bundle of friends for suggestions as to what music track I could put underneath it, which yielded some interesting results – anyone else keen on hearing ANOTHER inspirational clip backed by M People’s Search for the Hero?  Didn’t think so.  Nor me.

My music knowledge is pitiful, so I always fall back on asking the people I know who know their music and they all came up trumps.  The annoying thing about it is that I know all of the tracks (or almost all of the tracks) that they came up with, it’s just that my brain doesn’t work musically, so none of them occurred to me.  It’s an interesting side-note, that: if anyone wanted to think of a film-clip or quotation to fit something, I’d be right there, but asked to find some music to fit something, my brain draws a blank.

Amusingly enough, I had been cutting the piece to Mika’s Grace Kelly as a temporary fill-in with the right mood, and as I was getting my replies in, I finally managed to make the piece work with Grace Kelly underneath it, so as it happens I may not have needed the musical SOS anyway.  Still, it’s nice to know I’ve got people who still reply to my text messages, I suppose…

Tomorrow I’m off to Oxford in the morning for a quick once-over (nothing dramatic, I hope) and I’m hoping I’m not too tired to get back on with things in the afternoon.  That said, I’m not sure my brain can take 2 straight days of new information – it might over-heat slightly.

Full to the brim with new software knowledge I’m off to a) grab myself a cuppa and b) take myself to bed, where c) I hope to stop thinking in lists.

As previously detailed in the hereabouts, I have a mild addiction to Studio 60. Not only that, pretty much all the drama on TV that really passes muster (read: gets on my Sky+ series link) can be found with an American accent on one of the 4 channels. (That’s not as in “one of four channels” because that’s just stupid: I have Sky and therefore a zillion channels, most of them pap. One of the 4 channels meaning Channel 4, E4, More4 or Another4*)

What this means, apart from the fact that I’m essentially paying my television licence fee in order to sit and watch dramas from the other side of the Atlantic whilst my money gets frittered away on 2 Pints of Lager and a Packet of God-Awful Soap Operas, is that I spend most of my viewing time fast-forwarding between ComparetheMarket.com idents which would appear to crop up almost randomly within any given Channel 4 show.

I fully suspect that were I, in my late-afternoon stupor, to sit and watch an entire hour of Richard and Judy, I would find that they’ve replaced the You Say, We Steal Your Money feature with Same Car, Dramatic Difference.

It’s not even really the fact that by the time you’ve seen them for the 44,352nd time they get a bit repetitive, same-y and repetitive. It’s the arbitrary way in which they are shoe-horned into the programs that really gets my goat (if I had a goat).

I know it’s unfair to blame it on ComparetheMarket.com, but hey – we live in a world where it’s necessary for Blue Peter presenters to apologise for the mistakes made by THEIR BOSSES to the littl’uns who wouldn’t even understand what they’d done wrong if they had it explained to them Very. Slowly. Seriously – if you’re old enough to understand what they did wrong, you shouldn’t be watching Blue Peter by now anyway. Go put your hoodie on and sit on a street corner with the rest of the degenerate youth of today.

The timing of the ad breaks in Channel 4 dramas is so ridiculously out-of-place as to be almost comical. I say “almost” because despite it’s cosey up nicely to the mistress of mirth, I still find myself throwing objects at the screen every time they break the flow of a scene to blare 5 more minutes of capitalist propaganda (too far – sorry, go all high-horse Marxist in the middle of my rant there…). It’s getting worse, too. Last night it was the TV remote, which threatened serious damage. Tonight I damn near through K at it.

I KNOW the Americans have a very weird system of throwing ads in almost willy-nilly, but at least they do it at moments that feel right to the show – in fact, all shows on Network TV in America are written AROUND the ad breaks, they actually plan for them when they’re knocking out the scripts.

So why oh why oh why oh why and a few more why of whys can’t Channel 4 either ride shotgun with the Americans and surrender to their ad patterns or – at the very least – work the ads into a sensible spot in the drama.

I’ve lost count of the number of times an episode of Brothers and Sisters has stomped all over the emotional denouement of a scene to go to commercials mid-thought, when there is a fade-to-black which pops up within 2 minutes of the return of the break. Would it kill them to hold off on the ads for another 120 seconds? Would the regulators go bananas? Would their ad clients be raging on the phone? I’m going to guess not – if for no other reason than I chose to heap all of my scorn for the shoddy ad-break practices of Channel 4 Television onto ComparetheMarket.com who have the misfortune of having spend hudreds of thousands of pounds on a sponsorship package for shows which get ruined by arbitrary commercial breaks thrown in by editors with no sense of emotional beats or story arcs.

So come on, people, sort yourselves out. We clearly can’t all enjoy US TV series ad-less, like Heroes on BBC 2, but at the very least we can stop the ad breaks being quite so unflinchingly (or is that flinchingly?) annoying.

I’m starting the Campaign for Correct Placement of Ad Breaks (or, rather more niftily, I think, CFCPOAB) today – to run right alongside Save My Remote Control.

*May or may not be a real 4 channel.

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.