Monthly Archives: October 2007

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.