The good news is, I don’t have a cold. The news-that-isn’t-really-good-but-considering-
how-bad-“bad”-could-have-been-really-can’t-be-counted-as-being-bad (phew!) is that my body is keen to make me perfectly well aware of the fact that’s it’s been working very hard thank you very much and has decided to tell my legs, head, arms, neck and just about everything that’s not a vital organ to stop working for the time being. Essentially, my body is currently the French rail system.

Still, compared to dealing with a cold, I can definitely put up with feeling a bit tired and finding tea-making a chore. If I had to spend the next week in bed doing nothing and seeing no one, I would happily accept it for not having a cold. As it is, I am hoping to be able to make it over to my ‘rents tomorrow night for the Rugby, although there is the slight hitch that I may expend so much energy on screaming at the telly (judging by the semi-final), I may not be able to drive myself home.

(I’m acutely aware that the end of the last paragraph will have been hopelessly lost on my American cousins who look in here, so for translation’s sake: there’s a World Cup (think “world series” which actually involves other countries) going on in the sport of Rugby (“Football” without the nancy-boy pads and tea-breaks every 30-seconds) and England (that’s us) have made it to the (Grand) Final, which is somewhere akin to the Texans making the Superbowl (ie, so outlandish at the start of the competition that if you’d suggested they might do it, people would have either laughed in your face or had you committed).)

I’ve made a deal with my body – limbs and all – that I won’t do anything at all during the day tomorrow besides rest and refuel so that I can enjoy the game in the evening, and that I will do the same on Sunday so I can enjoy a meal in the evening with my bro, who’s deigned to reappear from the far side of the world where he was “working”. I use the term “working” very loosely, as he mostly seemed to spend his time sitting up a mountain finding it hard to breath. Heck, I do that in my own living room – I don’t try to call it work.

The only possible barrier to the deal on Sunday is that the Saints are live on TV, but judging from our performances so far this season they aren’t likely to be causing me a great deal of excitement or giving me much cause to scream at the telly. More likely I’ll be slumped in resigned resignation (it’s doubly bad, you see) as they let another 2-goal lead slip away and wave good-bye to another 3 points at the hands of some woeful defending while George Burley makes excuses about us “playing well”.

Still compared to spending the weekend lying in bed with snot dribbling out my nose, my throat closing up in protest, my chest kicking off in a major way and the beginnings of the mother of all chest infections, I think I can handle any sporting disasters coming my way.

It’s all about perspective, see.

I don’t like the change in the weather and I don’t like the on-set of autumn/winter. The change in seasons brings with it, every year, an abundance of new colds, flu’s, viruses and other horribleness and it makes life that much more worrying when you’re desperately trying to keep yourself well enough for a life-saving operation.

Yesterday I developed that odd feeling in the back of your throat, the little tickle-come-small obstruction you feel when you swallow which often prefaces the on-set of a cold or sinus infection.

If I’m honest, it’s petrifying. The last time I was unwell with any sort of cold/virus-type thing, it lead to the worst chest infection I’ve had for years and my body very nearly gave up the ghost. If it were to come around again, if the tickle becomes a cough, if the cough becomes a cold, if the cold becomes something else, it doesn’t really bear thinking about right now.

Try as I might, though, I can’t escape the thought of it. If someone tells you not to think about elephants you can guarantee that they’ll be singing, dancing and tooting their way ear-to-ear for the rest of the evening. An impending cold is very much the elephant in the room.

I’m suddenly hyper-aware of every creak and tweek my body makes, each breath that feels shorter becomes a worry, each cough that feels irregular concerns me. I’m doing whatever I can to get food, drink or any kind of calories down my neck in the hope of giving my body the energy it needs to nip this in the bud before it takes hold.

It’s impossible to know if any of it is likely to work – it’s impossible to know right now whether it is even the start of a cold or just a strange feeling in the throat. It’s impossible to know anything at all, really, which is, again, part of the problem I suppose.  I’m waiting through each passing moment to see what my body’s going to do, to see if I’ve done enough to see it off.  I’m on tenterhooks.

The one morsel of comfort I’m dragging from deep within my reserves of pluck and fight is the fact that as bleak as it seemed to get last time, I pulled through it – I fought my way out of it and afterwards I enjoyed some of the best fitness I’ve had for the last 12 months or so. Should I be facing the same fight again, I can only keep telling myself that I’ve been here and done that, and I should really look into getting a T-shirt.

It is inevitable that the ups and downs of life on a waiting list as fluid and unquantifiable as transplant are going to be increasingly hard to bear – each trough will reach deeper than the last and each peak will seem higher, whatever the physical stats may show.

Without fight, though, where would we be? Without the need to push ourselves forwards, to fend off the onslaught of the outside world against our frail bodies, how would the human race have come as far as it has?  How would we all make our way through our day-to-day lives?  My fight is no more than anyone else’s, merely against a different enemy, on different ground, with different markers of success and failure.

I suffer the slings and arrows of outrageous fortune, and I choose to take arms against a sea of troubles, but I know that without the help of the transplant team at Harefield, no amount of personal opposition will end them. All I can do is to my own self be true, and keep fighting the fight till the clarion call of a new life comes my way.*

*Apologies to W. Shakespeare

Does exactly what it says on the tin.

Happy Birthday, Mummy dearest. xx

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.