Monthly Archives: March 2007

I’m sure this is a sign that I’m improving and getting better and more active, but I’ve been frustrated again today by my body’s inability to handle more than a couple of hours of activity.

I seem to recall, as I sit here moaning, having exactly the same problem last November when this blog first started, and was forever moaning that I didn’t have enough energy to tide me over through more than a few rumbles of busy-ness.

So I already know that the answer is simply down to discipline and time, and that my recovery will be greatly aided the more I have of the former and the more I allow of the latter.

But being me, I don’t like it.

Yesterday, K and I nipped round to Mazda to collect our new toy – the brand, spanking new Mazda 6 2.0 5-door auto gearbox delight which is sitting out in the court now.  Immediately wanting to take it for a spin, we succeeded in getting to my parent’s house (where K had to print some college work) and back home as we were both shattered.

Having set aside this afternoon for a fun-run (in the car, not of the charitable, ambulatory kind) to bed it in and find out what she can do, we were both excited when we set out.  Expecting to do my usual round of the country roads, flitting through all the different road types to give us a really good sense of what she can do, we set off about 3 o’clock for an adventure.

Come 4.45 we were sat in my parents’ kitchen nearly falling asleep after just an hour and a half of driving, covering a fairly meagre 50-odd miles.  Surely I can have more fun than that?

But no, I remind myself, I can’t.  I have to accept that I can’t and find something rewarding and relaxing to do with my time at home on the sofa.

So, now K and I have the study sorted and the bookshelves up, with our wonderful new library formed from the merging of my collection and hers, I’ve decided I will simply have to get cracking on going through the host of titles K’s already been through and catching up on some literary culture.

I’m not sure quite how well that’s likely to go, but it’s got to be worth a try.  If I can’t improve my body, at least I can exercise my mind.

For those of you who wish to keep track, I’m just finishing off Stephen King’s Carrie and I’ll let you know what’s next.

…a discharge makes.

It took a while, but I finally managed to get myself kicked off the ward yesterday afternoon.  Probably more significantly, it was at the prompting of the docs and not through me harrying them as much as possible to get them to let me go.  In fact, in contrast to my usual practice of starting my “let me out now” lobbying campaign from the moment I arrive on the ward,  I actually didn’t mention it all to the docs until they raised it with me.

The thing about hospitals is that they provoke mood swings more severe and frequent than turns of a steering wheel in a rally car.  It’s possible to go from happy-go-lucky, ain’t-the-world-gorgeous, by-jove-what-a-wonderful-place to  weight-of-the-world, deepest, darkest blackness in a matter of seconds, and it can take a similar amount of time to recover back to normality.

None of which helps much when you’re trying to make sense of the random and rapid variety of things going on in your head throughout the course of the day.

If I said that’s the main reason I’m happy to be out and to be comfortably ensconced back at home in my study in my PJ’s and dressing gown, I have to admit I’d be lying.  Above all, it’s just nice to be back in control of my own day – not having to rely on the timings of physios, doctors, nurses and ward staff to decide when I can and can’t sleep, how long I’m allowed to rest for and the quality of my rest periods.

Back home, everything is part of my own control.  Except, ironically, my chest. But I suppose you can’t have it all.

I still don’t feel 100% – in fact I’m still wavering around 70% at the moment, but it’s a whole lot easier to be positive about outcomes when you’re not staring at the same 4 walls for 18 hours a day, or being woken up to eat a plate of mush which used to be vegetables.

It’s alarming when you spend as much time looking on the bright side as I do to find yourself in a situation where you can’t see a chink of light, let alone a whole side of brightness.  I’m sure that the very fact of feeling down about the world enhances itself because I get annoyed with myself for letting it get on top of me – a self-perpetuating circle, I suppose.

Now I’m home I just have to concentrate on doing what’s best for me and not over-working myself in my bid to get back to normality.  The last time I came outof a lengthy stay in hospital, I went back to Mum and Dad’s to recouperate, but this time I’m trying to skip that step and stay at the flat with K.

The next few days will tell us whether that’s a good or bad decision – largely depending on whether or not I can discipline myself to remain inactive as long as I need to be.  The danger of being at home as opposed to Mum and Dad’s is that there is far too much temptation to “just do” this and that, and all the this’s and that’s soon add up to being way too much and I find myself over-exerted again.

The main thing is that being back home I feel much more myself – more easy about things and less penned in to someone else’s routine.  Now I’m back I feel like my mind’s my own again and while it’s naturally going to take me a while to wash away all the negative thoughts, they’re certainly going to seep away much quicker in this environment that they were ever likely to on a ward.

I want to say a huge thank you to all of you who’ve left me messages and sent me emails – it makes such a difference to know that there are people out there rooting for me and willing me on.  It’s hard to explain the feeling of knowing that someone’s getting something valuable from a blog like this – it’s part of the reason I set it up but also one of the things I least expected to actually happen with it.

If nothing else, I hope the last few weeks (and hopefully the next few) will help to show that no matter what lows you sink to in health – be it mental or physical – there’s always a way back.  I’m under no illusions that sooner or later the physical is going to become insurmountable, but with a positive mental attitude (oooh, the PMA cliche!) and the support of my family and friends, I aim to make sure that I make it “later” – and preferably long enough to get a fresh set of blowers.

Take care, all of you, and look after yourselves.  Every single one of you is important to someone, and chances are you’re more important to some people than you will ever know.  Never forget that you’re amazing.

Alright, love-in over.

Ups and downs are par for the course in life, and we all learn to live with our own particular roller-coasters and merry-go-rounds.

Right now, I’m in a pretty substantial dip, enclosed as I am in my hospital room with what appears to be very little day-to-day improvement or sign of change.

I’ve been in just under a week now and, while I do feel better than I did when I was admitted, I don’t feel like I’m somewhere the docs might describe as “better”.

What’s become worse over the last few days is my intense focus on my transplant and when it’s going to come.

For the last 20-odd months, I’ve lived with the ever-present likelihood of that crucial phone call at any time of the day or night, but it’s always been something which I’ve lived with in the background and not paid much heed to.

Now things are looking less rosey, and with landmark moments being missed and life being put on hold, the urgency has been brought to the fore and the once-in-a-while thoughts have turned to a daily dwelling.

What upsets me most about things at the moment, though, is how much this borderline obsession is changing me as a person.

Not only do I feel more negative than I have for a while – finding myself struggling to see the fun side of life or consider anything that might be conceived as residing in the “future” – but I’ve also developed what can only be described as a jealousy towards others.

One of my closest “net-friends”, with whom i’ve shared many of the bizarre, amusing, surreal and downright scary moments of the transplant process, has been granted the gift of life which had so long eluded her.

But rather than finding myself eagerly awaiting news of the new joys she’s discovering every day, I can’t bring myself to catch up on things because I am constantly hit by a wave of “what about me” feelings.

I don’t recognise this as a trait in myself – it’s just not me. I’m not a jealous person and i’ve always delighted in the triumphs of my friends, family and all those around me.

So why the change now? What is it about my life at the moment that has brought out parts of myself that I never knew I had?

They say you learn a lot about yourself in adversity and “they” are often right. But how much of my current mood and outlooked is a deep-rooted personality defect that’s been dormant for years and how much is it merely distorted through the prism of life-threatening illness and the hope of salvation?

I honestly don’t believe I’ve changed as a person, nor do I think that my current health-hurdles are insurmountable. Similarly, I don’t expect my run of negative thinking to go on forever, but see it merely as a darker period brought on by hospitalisation – an effect I’m all too aware of from past admissions (both recent and historic).

The trouble with lung damage and infection is that it’s incredibly hard to know when you can reasonably expect to regain your lost lung function after a bout of infection and when you have to accept that you’ve waved goodbye to the portion of lung for good.

Clearly, the lower the function in the first place, the less there is room for movement either way. So when lung function drops, it’s hard to keep the fatalistic wolf from the door – both physically and mentally.

I’m not giving up yet, though. I’ve been through tough times before and although I’ve never considered myself quite as close to kicking it as I have this time, I’m confident that I can get past it.

This is largely thanks to my ever honest and sensitive team at Oxford who know what goes through my head and aren’t afraid to tackle the issues – and fears – as they come up.

I may not be able to bring myself to stay fully abreast of a good friend’s post-transplant progress, but I can still remind myself how often things looked bleak before the big day arrived.

Everything comes to he who waits, and while my new lungs may be the longest-settling pint of Guiness in history, I’m sure I’ll soon be frustrating someone in my position with my tales of new wonder in my life.

As steps go, it's difficult to know whether this is backwards or in the right
direction.

As I sit here on the ward in oxford looking at the plain white walls and
interestingly green doors, I realise it's a bit of half-full/half-empty kind of
moment.

My instinct is telling me that after convincing myself I'd dealt with the virus
and kept it off my chest for the last 5 days, it's a bit of a massive step back
to find myself not only incarcerated, but also missing more work and rehearsals
for the activ8 show.

But my sensible, well-perspective'd head tells me that no matter what I'd
managed to convince myself, my chest wasn't what it should be and if I want to
be in any state to enjoy the show itself or to carry on with any of the projects
I so enthusiastically outlined not so long ago, then I need a stay at the doc's
pleasure to set me back on the right track.

Still, it doesn't take away from the fact that this weekend I'll be missing not
only the second mate's birthday celebration in the space of 8 days, but also the
Christening of a really good friends first child. You can be as upbeat as you
like about missing things for the betterment of your health and ignore birthdays
as repetitive annual events, but missing a once in a lifetime ceremony to
welcome a child into the Kingdom of God just plain sucks.

There's nothing I can do about it, though, so I suppose getting stressed or
moping about it is fairly pointless. After all, I would much rather be round to
see several more significant birthdays in her life than make it to a Christening
and not see her 1st.

It's all a matte of perspective, which at times like these can be hard to come
by. Much as you search for the better angle, it's frequently masked by the
obstacles in the way or the apparent unfairness of life.

I'm determined not to be dragged into a mire of negative thought. I know that
the next few days are going to be tough and the weekend especially so, but I
know i've got the resources to see me through both within me and around me in my
wonderful family and fantastic friends.

Just knowing that there are people out there thinking of you, rooting for you
and praying for you makes such a massive difference. So don't stop now - I need
you to shout your loudest!

No, not like that, you dirty-minded little ratbag.  Hehe – I said ratbag.

No, swinging as in modd-swings, as in ups and downs and roundabouts – a very Miton Keynes kind of blues.

Today’s been full of it.  Every particular kind of “it” you can imagine.  Except that one.  I’ve been up, down, and all around, trying to work out what on earth my head, body, mind, brain, chest, feet and hands are up to.

I’ve decided the answer is that I don’t know.

Having spent the weekend doing nothing, following two days of doing nothing, I’m feeling somewhat bored of nothing-ness.  Today was supposed to be a better day because a) I’ve spent 4 days doing nothing, so I must have improved, even just a little and b) I actually had something to focus on – a telephone interview with David Seaman (ex of England and Arsenal) for CF Talk.

It started slowly (the day, that is, not the interview), it taking me a while to wake up, but I did get up with a good deal less pain than I’ve had for the last few days.  This morning’s discomfort was more in the line of “aches” than pains, which I attribute largely to muscular discomfort after over-compensating for the positions which caused me pain over the weekend.

After dropping K off at work, I prepared for the interview, but when I phoned, David was out (how inconsiderate).

I then sat around for the rest of the morning and I have honestly no idea what I did in the 3 hours between phoning DS and speaking to him when he phoned me back this afternoon.

I’d rather given up on the idea of speaking to him today, actually, and was hugely tired before he did call.  I toyed with the idea for a while of leaving an out-going voicemail message saying, “Hello David Seaman, thanks for calling back, I’m just having a bitof a nap at the moment, but let me know when you’re free and I’ll call you back when I wake up.”

Thought it might seem a bit odd.  Especially if the BT man rang.

Still, I managed to prise my eyes open long enough to hang on for his call.  I managed to stay awake all through the interview, too, which I took to be a good thing because I can’t help feeling it’s a little rude to nod off when talking to a celebrity over the phone.

As it happened, I’m not sure he would have minded, since he seemed like a really lovely bloke.  I managed to glean lots of interesting bits and bobs from our half-hour chat today, including the fact that he is a huge INXS fan, which I promised not o hold against him, in the same way I tried not to hold it against him that he captained the Arsenal side which beat Southampton in the 2003 FA Cup final I was in Cardiff for.

I also learnt he owns a Geri Halliwell album.  He claims it’s his wife’s.

After that, though, things seem to have gone downhill.  (In my day, not the interview, that is).

I picked K up from work and took myself off to bed, where I dozed for an hour or so, then propped myself up in bed with a cuppa to read for a while, but found myself feeling distinctly unpleasant after not too long.  This rampant see-sawing of  wellness has started to drag in the most incessant way.

I’m finding it harder and harder to stay on an even keel mentally when my body sees fit to flip-flop all over the place physically.  It’s not that I seem to be changing from day-to-day, it’s that I can change from hour-to-hour, one minute up and full of energy, ideas and get-up-and-go and the next minute with less energy than a battery-run bunny after a 10-hour run-off against the Duracell dude.

If only there was a pattern or a rhyme or reason to what was happening or when it happened, I would at least be able to square it in my head so that I was prepared for the sudden on-rush of bleakness.  But the constant swinging from state to state creates such an enormous  flux through the day that I find it impossible to anticipate and I find myself being dragged down mentally as soon as I flag physically.

I am hoping against hope that the next few days bring a renewed strength and chance to focus myself on to some of the things I really want to do, because much more of this flip-flopping, see-sawing, up-downing and I think I really might go mad.

Either that or I’ll find myself watching day-time TV, which is the same thing, really.

I still can’t move, but on the plus side, we have nice new bookcases in our study, which means the floor no longer resembles a preparation area for Fahrenheit 451.

Ever since we created our new study out of K’s old bedroom in the flat, we’ve had a desk and filing cabinet, but no where near enough shelf space to collect together the frankly bonkers number of books we both own.

But now, thanks to a mercy visit by both sets of parents, we have two gloriously beaming new bookcases which not only hold all of our current collection, but also have enough room for us to “grow into” – for the next six months or so, at least…

I was entirely useless at helping put them up, though, as I’m still pretty much immobile with whatever this virus is I’ve picked up.  For variety, the pain today has focused itself mainly in my neck, making me unable to glance sideways at people in that wonderfully comical manor which I so enjoy.

Not only that, but it’s meant that every time someone sitting next to me asks me a question, I answer them with a half-hearted wince as I momentarily forget my aches and turn quickly to answer them, only to be reminded instantly that turning my head 90 degrees is exactly the one movement that I’m incapable of today.

Still, at least I’ve not lost my sense of humour. (At this point I’ll gladly thank my parents, K and her parents for not correcting me in a comment below).

Generally, today (and yesterday) have been pretty rubbish.  Not only have I been in near constant pain – or at least major discomfort – but I’ve also had to miss out on a really good friend’s birthday celebrations and also to sit idly by and not be able to help put together things to go in my own flat.  Not a highlight of my year so far, I have to say.

I’m trying incredibly hard, however, not to let it drag me down, although to be honest it’s starting to.  I’m not ill, so I can’t complain really, but I do’nt feel well enough to really “do” anything, which is unbelieveably frustrating.

It’s so hard to define what’s going on with my body, or my head, at the moment and it’s really rubbing me up the wrong way.  All I can hope is that another day or two of rest will be enough to drag me out of it and that as my physicality improves, so will my mood.

If not, heaven help poor K as she’s had to put up with enough of a mono-syllabic, sour-faced, misery-guts of a boyfriend for the best part of half a week now.  Please God I get better soon, for her sake if no one else’s.

There was me thinking I’d got thing under control after my weekend dip and I manage to get myself laid low with a virus.  Not a regular, all-singing, all-dancing kinda virus, mind, but a really pathetic, weedy one which is just enough to prevent me doing what I want to do without making me feel REALLY ill.

The last few days I’ve been struggling with a bit of low energy and this morning I woke up feeling very lethargic, but also with all sorts of aches and pains all over my body.  My lower back was hurting, and I felt like I’d pulled the muscles in my groin (which I think is pretty much impossible when you’re asleep).

Added to that, when I got up I had aches through my knee joints and around my shoulders and pains in my hands and fingers.  Chest-wise, I feel fine – no better or worse than usual, but I just can’t seem to do anything that involves moving without either wincing or nearly losing my balance.

After talking to a few people from the CF Trust message boards, it seems that it’s just a virus that’s going around, which should wear off in a few days with some decent rest, but it’s no less annoying for it.  The best news, really, is that it doesn’t seem to have done any harm to anyone’s chest, or caused infections or anything, which is a definite plus.

So it’s a few days in bed/on the sofa for me, which I’m going to find exceedingly annoy because – as you’ll have seen from my last post – I’ve got a whole load of things that I really want to be getting on with.

Ah well, the sensible, mature me will have to take charge and remind myself that having projects is all well and good but if I don’t keep myself well enough to enjoy them, what’s the point?

Send me get-well vibes!

On top of the new play, there are more things bubbling along in the Oli-melting pot at the moment, all grabbing my attention here, there and everywhere – that’s how I love it, though.

First off, and most importantly, there’s the Activ8 Youth Theatre show at Milton Keynes Theatre, which is coming up on April 22nd and is coming together really nicely in rehearsals at the moment. We’re currently chatting about marketing strategies and getting all the info on the show out to a wider audience than would normally support a Youth Theatre show, mostly because a) the kids and young people taking part really deserve a full house to show what they’ve achieved and b) it’s all in aid of the CF Trust.

So if you’ve nothing in your diary for April 22nd, click here NOW and book your tickets to come and see the show. It’s going to be a knock-out and the earlier you book, the better seats you’ll get, because they’re all priced at a fiver – that’s cheaper than a night at the cinema!

Beyond April, the LLTGL team have a couple of projects we’re starting to look at, including looking ahead to a repeat of Laughter for Life next March, following the immense success of this year’s show.

We’re also looking at the possibility of organising some kind of a rally – maybe in super-cheap cars – which would take place in early autumn and involve a jaunt around the British Isles in some form or other. And, naturally, would end in a nice big party when you reach the finish.

There’s lots of good ideas bouncing about and I think it’s something we’re going to pursue soon, but it’s just a case of nailing down the format and looking at logistics and things like that.

Keep your eyes peeled for more info as and when.

On top of all of that, I’ve got the new issue of CF Talk to turn around and get off to the designers so we can get it out at leat vaguely in the right timescale. OK, so it’s still going to be as late as ever, but I promise it’s going to be good.

If you’re not already on the mailing list to receive CF Talk and you’d like to (it’s free, from the CF Trust) just email here with your name and full address and we’ll make sure you get a copy.

So just a few bits and bobs going on for the moment – nothing too drastic.

Oh, and I also received an email from Bill Bryson yesterday, letting me know how hugely successfully the organ donor campaign has been going at Durham University, where he is currently chancellor. Not only that, but that he was taking the campaign idea to chancellors of all the other uni’s today to see if we can’t take it nationwide.

I met Bill around this time last year at the CF Trust’s Breathing Life Awards and immediately hi-jacked him for an interview with CF Talk at some point later in the year. Sure enough, he obliged only to happily and our brief 15-20 minute phone chat turned into nearly an hour.

In the middle of the call, while I was supposed to be interviewing him, I mentioned the fact that I was waiting for a transplant (it was actually in the context of a question about holiday destinations) and he turned the interview around and positively grilled me (in the nicest possible way) about transplants, the organ donor register and the problems that we have with donation in this country.

From then on, things seemed to take a life of their own and it only seemed that a light jogging was needed from Bill to his students for them to shoot off and go crazy with the idea – running off T-shirts and organising the campaign with amazing professionalism, it would seem.

Apparently, although I’ve yet to see the “merchandise”, it all centres around the hook, “My friend Oli…”. Being the naturally shy, introverted type that I am, I obviously feel very uncomfortable about all of this, and the prospect of yet more attention being focused not only on Transplant, but on me personally. However, sometimes in life you have to make personal sacrifices for a greater cause, and I feel that this is one of those times.

I mean, come on, a campaign named after me!?! Pretty soon it won’t be lack of portable oxygen keeping me in the house, it’ll be a head too big to go through the door….

All those of you who visit and read me avidly (or just slightly bored-ly) and long to pass on my blog address to others to entertain, or bore stupid, but have trouble remembering the site address – REJOICE!!

For the benveolent Family Matlack from Texas, with whom I managed to HUGELY over-stay my welcome in early 2004 (which is an epic tale far too long for this post) have once again come up trumps, totally out of the blue.

Clearly worried that far too many people were missing out on my myriad ramblings and mighty rants against the world/my chest/other people’s blogs/life in general, Adam – the techno-savvy gadget-freak I always wanted to be – has not only registered smilethroughit.com for me, but also done all those little bits of re-directing and stuff that I would never have known how to do.

So now you can email all your friends, update your myspace, add to your favourites and generally pass on to the world that the greatest blog in Knaresborough Court is now officially www.smilethroughit.com

Woo-hoo!! And YAY for our American cousins (when they’re not duping Tony B into war….)!!

AND I bet I still can’t beat him on the X-box….

I’m nothing if not reliable – I’m quite liking this new era of being able to work out what my body’s telling me, it’s certainly better than the confusion leading up to Christmas this year (see Nov/Dec’s posts for more) – as yesterday and today I find myself back on the wagon and with enough energy to get through the day again.

Not only that, but I’ve also found the time (and inclination) to start a new ball rolling.  Yesterday, for the first time in nearly 3 years, I think, I actually sat down and started writing a new play.  It’s only small, and not very grand, but with 8 pages down on the first day, I can really seee where it’s going, which is somethin of a rarity for me when I first start projects.

It’s actually based on a couple of ideas I’ve had for quite a while, but have only recently strung together to make a sensible whole.  The whole thing kicks off with an image/scene I’ve had in my head for ages, but not been able to find the right context to put it into.

One of my biggest problems when I start out writing is knowing where things are going to go and knowing that there is some conflict there which will drive the story/plot.  Many of my abandoned attempts at plays in the past have fallen by the wayside because nothing happened in them.  As good an ear for dialogue as I think I have, all talk and no substance doesn’t make for a very interesting play.

So I’ve kicked off the new one with a cracking first 8 pages at the first sitting and I’m hoping to keep up with around 5 pages a day in the hope of getting a first draft done by the time I go into hospital for my next planned course of IV’s at the start of April.  From there, if I like it, I’m thinking of submitting it to the Verity Bargate Award which Soho Theatre runs every year.

It’s about time I actually started to put my scripts out there and stopped sitting around at home calling myself a writer with nothing but a couple of 10-page Youth Theatre pieces to show for it.  I also plan to redraft an old script of mine which I workshopped when I was out in Texas – I’ve got reems of notes on it, but never seem to have managed to get into the groove of turning it around.

I don’t know if it’s the spring sunshine, the move away from the cold, dreary winter nights, or the knowledge after Laughter for Life that I really can achieve something if I set my mind to it, but I seem to have found not just inspiration, but motivation thrown in.

I’m all too aware of the ease with which my motivation can drop, so I’m keen to harrness it while I can.  And once I’ve built up some momentum, hopefully it’ll just keep coming.

And now I’ve blogged about it, of course, I’ll have plenty of people popping their heads in to ask how it’s going, which is only going to make me work harder, since the only other option is learning how to lie convincingly about what I’ve managed so far – and that’s just not me.