Archives: Difficulties

Not much more to say, really.  Am feeling utterly deflated that at the end of 2 weeks’ IVs which have boosted me rather wonderfully and got me feeling very good and positive, I wake up this morning with puffy, stuffy sinuses and a whisper of a headache, which has spent the day hovering between going away and worsening into full-blown cold.

There’s not a lot I can do to keep it from setting in full-blown, I don’t think, certainly no more than I’m trying, which is lots of rest with lots of calories and spraying First Defence up my nose like teenage boys spray cologne on a night out.  The plus side, I suppose, is that at least I don’t smell as bad as they do.

Thinking about it, I suppose I have to take the blame for the onset of the cold, since I did make the mistake of saying yesterday that I wanted to be productive today and get things done.  If this blog has proven one thing over the last 12 months, it’s that whenever I talk about getting things done, something crops up to get in the way of it.  I really should learn just to keep my mouth shut.

Realistically, it’s more likely than not that the cold is simply my body’s reaction to a frantically busy weekend – it’s a long time since I’ve had 3 night’s of “entertainment” in a row and although I rested a lot in the day times, it must still have worn me down.

It’s frustrating and – as always – a little scary to be coming down with something, but at least I have the security of knowing that I’m getting it at my very best point physically.  I’m just a day from finishing IV’s (which will now be extended by another week to cover any knock-on effects from the cold) and still on steroids, which means my appetite is good, my chest is as good as it ever gets and I’m firing on as many cylinders as I’ve got.  If there is ever a “good” time to get a cold when you’re aware of the possible consequences to a pair of dodgy blowers, this is it.

So I’m off to get some more physio done, shovel down some more food, suck down some more Lucozade and pray to the Big Guy to keep this one mild.  All help appreciated, if you’re so inclined.

That’s the sound made by me hitting yet another low after a nice 48 hours of high.

I’ve been um-ing and ah-ing over whether or not to drag down the recent positivity of my posts by indulging in my slight rearward step, but on reflection of the last two days I realised that what this blog started out as was a way for me to keep track of the course of my progress up to and hopefully beyond the point I receive my new lungs.  It seems entirely counter-productive to gloss-over the bad bits in order to spare what few regular readers I do “entertain” on here from being exposed to more difficulties.

Yesterday was actually a really good day – spent largely in bed/on the sofa doing very little indeed recovering from Friday’s grand night in, then sharing a lovely meal with K’s ‘rents which saw us pass over her Dad’s 60th birthday pressie (which is only 6 (and a bit…) months late).  Was worth the wait, though – we got a photograph he had taken in Central Park blown up and printed on to canvas for him and it looks amazing.

It wasn’t until after they had left that the day slid away from me.  Every night I sit at my computer in the study and do my nebs and casually surf around the ‘net for the 15-20 minutes it takes, most often taking in other people’s blogs and catching up on friends’ news.

On Saturday night, I made the mistake (it would appear) of clicking through into Facebook while I was browsing.  It was there that I found a new batch of photos a friend had put up of the festivities at another friend’s wedding.  The happy couple (God bless them, in the most sincere way possible) are friends I used to work with at MK Theatre and have enjoyed many a night out with over the years, both at work and outside.

Clicking through the newly-created photo album (put up by someone who clearly left the party too early if they were awake and/or sober enough to be able to connect their camera to a computer and upload the pics), I was met by face after face of happy, smiling people with whom I’ve enjoyed countless brilliant nights out over the years I worked at the Theatre and, indeed, since I left.

It struck me suddenly – in that sort of round-house punch/kick in the crotch kind of way these things tend to occur to you – that it’s been a very, very long time since I was out with all of them.  In fact, it’s been a very, very long time since any of them would even have thought to bother to ask me to go out with them.  Not through any fault or malice on their part, but simply because they know I wouldn’t be able to join them.

Sitting looking at happy face after happy face, smiling friend after smiling friend, it slowly dawned on me just how long it’s been since I’ve done anything remotely “normal” for a 25 year-old who claims to work in the Theatre industry.  I’ve not been to the Theatre, I’ve not been to the cinema, I’ve not been out for a drink, I’ve not even been out for a latte or “done lunch” – it’s not just “normal” that I’ve missed, I’ve even managed to lose “pretentious” too.

I suppose it’s a positive reflection on my state of body/state of mind at the moment that I can sit here after the fact and see inject some humour into it, but it really did hit me quite hard as I flicked through the album.  Some kind of intense sense-memory came washing over me and I could hear the voices, the laughter, the banter, the music; I could see the suits, the dresses, the dancing, the staggering, the pretty, the happiness and everything else.  I wanted so badly to be back there, to be laughing, singing, drinking, dancing – just being.

When I first started this weblog almost exactly 12 months ago, I truly never would have believed that without my transplant I would still be writing it today, so it is with no little understatement that I suggest it’s not a bad thing to be here – sitting comfortably in my desk chair, living with my wonderful girlfriend, having spent an amazing weekend enjoying the company of my friends and both sides of my family – complaining about not “getting out” enough.   If there was ever a “meaning” to this blog – a reason, plan or intent behind it – it was to remind myself of the good things in the face of the bad things.

So it is with a deep breath in and a sigh of appreciation that I thank Last Year’s Me once again for providing me with a place to come to remind myself that no matter what’s going on in my life, my body or my head, things are never as bad as they seem, that there’s always a light at the end of the tunnel and that the most important thing in life is to keep on keeping on – Smile Through It.

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?

…the IV mood swings and energy dips, Ladies and Gentlemen!

Like all good anti-biotic courses (or at least all of my regular IV courses), it doesn’t take long to start really messing with your body in as many ways as possible.

So far we’ve got: random tiredness springing up out of no-where; random waking-upness springing out of nowhere; unquenchable thirst; over-bloating from taking on too much water; dry mouth; raise appetite; sore limbs/achey legs; irrational dip in mood; irrational spike in mood; regular-season, common-or-garden tiredness.  Although so far (with plenty of wood on hand to touch, knock-on, slap my head against etc), I’ve managed to avoid the usual mouth-ulcers and other thrush-like symptoms.

I have delighted, however, in spending 2 days doing pretty much nothing at all, including going back to bed after my a.m. dose and sleeping through practically the whole morning.  The one thing you can guarantee about IVs is that if they make you feel tired, sleeping is the most wonderful counter to it.

I appreciate that might sound a little “well, duh!” obvious, but it the kind of situation I’m in, it’s actually not a given that sleep helps things.  A lot of the time, the tiredness I feel isn’t actually helped out by sleeping an extra 3 or 4 hours, like you might expect.  It’s a kind of false-tiredness which is more a complaint from the body about having too much work to do than anything else.

On IVs, though, it’s a different story.  The tiredness is much more a sign of the things starting to work and almost begging to be given more down-time in which to do their stuff while not having to concentrate on boring things like day-today operations of eating, drinking and sitting upright.  What that happily means for me is that the next few days will be spent fitting in 12-14 hours of sleep in every 24 and actually feeling refreshed for it when I’m not sleeping.

IVs are pretty rubbish, so grabbing hold of the positives is pretty important and it wasn’t really until today that I realised how much the sleep-inducement of IVs can actually help-out, so I’m going to cling to that for the next few hours while I try desperately not to drop off from exhaustion while I wait for my next dose.  That’s the other problem with IVs – if you sleep at the wrong time, you can guarantee that it’ll come back and bite you on the butt and keep you WIDE awake just when you want to be getting the best of your shut-eye.

Anyway, moving away from all the boring medically-stuff, K and I picked up the 3rd season of Lost on DVD this week.  I say picked up, I mean had the nice people at Play.com deliver for us.  We were both hooked on the first two seasons but then missed out on the 3rd when it switched from C4 to Sky One, so we’ve been itching to get our hands on it for ages now.

Finally, we’re back on the wagon – or off it, I suppose, since we have kicked-off a major addiction which is currently managing to over-rule just about everything else in the world apart from sleeping, eating and doing doses of IVs.  In fact, it’s ideal really, because if I’m going to be making the most of these IVs I really do need to be doing as little as possible, so Lost is keeping me in check, glued as I am to the sofa for endless back-to-back episodes.

The trouble is, we’ll be through this season in no time, and then we’ll be lost without Lost.  So I’m thinking we might have to find some new old TV to catch up on in DVD box-set format.  US TV comes in such handy little 40 minute chunks that it fits perfectly into little treatment slots like gaps between nebs and physio and doses of IVs, so it’s ideal for life at the moment.  I think we may be getting through a lot more soon.

But first it’s back to the island to unravel more of the might mystery….  It’s sooooo good!

I’m in the mood to write a really witty, random, stream-of-consciousness blog tonight, but I can’t because a) I’m knackered and b) I’m knackered.  Also, I’m pretty knackered.

(Incidentally, when I say “in the mood” what I really mean is “tired” since all of my best stream-of-consciousness is always written when I’m tired.  But not this tired.)

(Incidentally, it’s just occurred to me that I can remember the very lesson at school at which I learnt how to spell conscious and consciousness.  Odd, isn’t it?  That and “immediately”, although they were different lessons.  In fact, the teacher who taught us “immediately” taught it to us with a rhyme and to this day I can’t type “immediately” without the tune going through my head.  Weird, huh?)

Anyway, knackeredness (yay, new word!) caused largely by Oxford trip today, coupled with start of IVs, which I really should have predicted but thought I could get away with.  My wonderful physio set me straight, though, and made me see the better of kicking off today as opposed to Monday as was my wont.

For all you stat-monkeys out there, today provided a L-F of 0.7/1.2, Sats of 90% and a weigh-in at 54.4kg.  All of which is really not that bad, really.  But with increasing morning headaches, poor sleep and a newly-discovered need to turn Neve up just a trifle over-night, it made sense to kick off some IVs and head-off whatever may be on its way before it decides to settle in for the winter.

First dose this afternoon went fine and dandy, steroids started with them, so expecting huge appetite to kick in sometime in the next few days, too.

Can’t think of anything more to say.  Immediately — it’s such a nice song.

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.

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

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.