Archives: Friends

Happily, the jinx doesn’t seem to have lasted too long, which is definitely a good thing.  After a bit of a slow down at the end of last week and a weekend spent doing as little as possible, things seem to be back to where they were before I decided to blog-big about my projects and plans.

From now on I intend to only highlight imminent events on here, and to talk about everything else only once it’s safely behind me.  Which is odd, because I really don’t believe in jinxes/superstition.  As my brother delights in telling me, it’s unlucky to be superstitious.

So, the last couple of days have seen me finally bite the proverbial bullet and really get my head into CF Talk to get it swept off to the designers.  They do a fantastic job, but do insist on having FINAL copy before going to work on it, as they’ve found to their cost in the past that if people are still chopping and changing while they work then a certain turn or phrase or clever image in the text that spurs them on to create a funky look for the page can disappear and leave the reader bemused as to where the page-layout idea came from and possibly whether the designers were smoking something while they worked.

And I know for a fact that Tin Racer is a no-smoking facility.

The trouble with having to provide them with final-final copy is that I’m terrible for making lots and lots of little tweaks to the text for the CF Talk copy.  Often, the copy we receive is too long for the format and needs to be cut down, but I’m always anxious that while I may be cutting and re-jigging the article, I am never rewriting it.  Because the whole idea of the magazine is that it is written by pwcf for pwcf, it’s really important to me to keep the original author’s voice on their work, and not edit it into one homogenous style throughout the mag.

What this means is that while I’m editing, I’m constantly making changes and adjustments to the articles to make sure I’m keeping the thrust of what’s been written, as well as the original voice, whilst shaping it into an article that will fit within the space constraints imposed by our format and style.

It’s not easy and it’s one of the jobs that I always find myself trying to delay.  This time it’s been even tougher as I had a long spell out of the editor’s chair going through my recent rough patch, which meant that I had to come back to look at all the articles again, having completely lost the flow I was in before I had to down tools and sort myself out.

Happily, though (and I do enjoy seeing that word twice in the same blog entry), I have now managed to sign off on over 3/4 of the copy for the new issue and turn it over to the guys at Tin Racer.  All I have left to do is all the little mop-up pieces which come last, like the Editorial for the issue, the contents page and the competition page.

It’s been a long time coming, but hopefully we’ll carry a bit of momentum into the next issue and get it out quite quickly this time round.

Obviously, I’m looking at taking a long weekend off all work-related bits and pieces this weekend to make the most of my 25th Birthday, for which I have so far studiously avoided planning anything.  It’s a little sad, I have to say, to not be able to celebrate things properly, but I’m actually so glad to be here to see it and to be able to share it with all my family and friends, whether I get to see them or not, that it’s not got me down as much as one might expect it to.

I’ll be sure to chart progress of the other work I do manage to achieve this week on here once I’ve got there, but I’ll hold back from jumping the gun and shouting about my plans for the week for now.  I’ve learned my lesson.

This is why I don’t like tiredness. My mini-rant (was it mini?) yesterday has been playing on my mind all day.

I stand by what I say, because it is all incredibly annoying and occasionally morale-sapping, but at the same time I feel a bit petulant for having brought it up in the first place. I suppose it’s the “suffer in silence” side of me coming out again.

Lest anyone get the wrong impression yesterday, I don’t hate my life. I have a huge number of very positive things going on in my life and I’m surrounded by wonderful people. I enjoy every day (some more than others) and like to make the most of what I can do with each one.

Although I may not be able to do the things I did this time last year, and although I may get a little down about being in a different situation which places more demands on my sense of sensible-ness than it has previously, I still manage to do the things that matter most to me and living in this way has given me a wonderful sense of my priorities in life.

I received an email today from someone who had obviously got my address from the message boards and wanted to ask me a couple of questions about life etc. In my reply to her, I realised just how much of a positive thing being on the transplant list can be.

Rapidly declining health, or a low-health plateau such as I’ve hit at the moment, is wonderful for really hammering home what really matters in your life – what you choose to expend your energy on.

To use an analogy, a day’s evergy is like a bottle of water: every day you wake up in the morning and you fill your 2 litre bottle up to the brim with fresh water. Over the course of the day, the various things you do each require different amounts of water. Make breakfast takes, say 100mls. Do some exercise and you’ve spent 500mls. Sit as your desk working for a few hours and it’s a few hundred mls more.

When you get the stage I’m at, suddenly you’ve not only got less water – a single litre, maybe – but it also takes more water to do things. Cooking a meal becomes 250mls, which is 1/4 of your daily allowance taken up already. Walking anywhere, for even the shortest amount of time may be up to 500mls – half your day’s worth gone. And on the worst days you can be doing as little as possible and still find that you’ve got a hole in the bottom of your bottle and you’re leaking energy all over your shoe.

So when I wake up and fill my bottle in the mornings now, I know that my ration is that much less than I’m used to, that I need to make sure that the water I am going to be pouring out of the bottle goes in the most sensible of places.

Sometimes it’s not even the most sensible place – sometimes it’s just the place that matters the most. But you know that if you’ve only got a finite amount of energy for the day, there’s no point wasting it on things of little consequence. It means you spend it on the things that really matter.

Yesterday, thanks to a busy weekend, I had a very small bottle of water. But I knew that the most important thing to me was to see and spend time with my Godson. I only manage a couple of hours before I ran myself dry, but those were two of the best, most enjoyable, most pleasure-focused hours that I’ve spent with my Godson for a long time – because I knew I was using my ration for him. It didn’t matter to me that the rest of the day was a total wash-out and that I would be incapable of doing anything else: I was more than happy to use my ration on him and him alone.

The thing I dislike most about tiredness is that loss of perspective that it delivers – how it takes away your ability to see things in the light you normally see things. It’s not about losing the facade, which I seemed so keenly aware of yesterday, it’s about losing the bright side – losing the very positivity which drives me forward each and every day.

I try to keep my water bottle as full as I can and I try to replenish it as frequently as possible. But some things are worth emptying it out for – and it’s when you realise what those things are that you really strike gold.

It appears, having just flitted over to the CF Trust’s message boards, and by looking through my inboxes, that I’ve had people rather worried by disappearing from my blog for the last few days.   Oops.

I assure you, everything is fine.  Certainly improving.

To tell the truth (not sure why I needed to add that, since it hardly pays to lie to oneself on your own blog….) I was bumming myself out, which is why I stopped for a bit.

Far from reminding myself to Smile Through It and keep on finding the positives in the darker times of life, I found that every time I started writing a post on the blog in the last few weeks, it’s only been to say either that I feel like cr*p or that nothing’s changed for the better.  Even the times when things had changed for the better, the change seemed so infinitesimal and pathetic that it either wasn’t worth mentioning, or served only to lower my despondency about how I’ve been doing.

It’s been weird to find myself trapped in a vicious circle of negative thought, and not something I’ve been used to in life.  Most times, my dark periods inhabit the odd spell of a week or so before things conspire to kick me up the butt and show me the way to carry on.  This latest down-turn has been different, though.

I don’t know if it’s the increased fear of mortality (or, “Am I gonna kick it?” as I prefer to call it) or the impairment to my quality of life inherent in having sunshine blazing through the windows but not enough energy to leave the apartment and enjoy it, but I’ve been lost in a mire of negativity for the last few weeks from which I seemed to have lost the map that usually provides my guide.

Sure, I’ve had good moments – I’ve managed to share Easter with the families around me, I’ve shared a little laughter with friends, I’ve even managed a trip to Borders (hurrah!), but there has been an overwhelming sense of good, old-fashioned, Dickensian melancholy hanging over me throughout.

It’s not that I entirely lost perspective on the whole thing: last week I was sitting a the funeral of a young girl who’s been an almost constant fixture of my working life for the last six years, since she’s been coming to the MK Youth Theatre sessions since their inception.  Sitting in the packed church among many young people experiencing their first distressing taste of grief, I realised that the very day I hit my lowest point – Sunday 1st April, as documented here previously – her Mum, Dad, younger brother and Grandparents were waking up to a new world without their beloved daughter.  How could I complain about pain in my life when held up against the pain of a parent outliving their child?

I’ve still appreciated each day I’ve been given, but it sticks in my proverbial craw (I’ve never really known what that means, but it seems to fit here, anyway…) that “making the most of it” is limited to sitting in the chair at the bay window using the bright sunlight to read by, as opposed the to dim interior light all through winter.

Finally, though, after weeks of dragging myself through the rough parts of every day and persevering in ways I wasn’t even sure I was capable of, I seem to have made it out the other side.

That’s not to say things are all bright and rosy, but I have at least got the energy to pop over to my ‘rents and enjoy the fresh air and sunshine if I want to, or to sit in the study and surf the ‘net a while without completely exhausting myself and having to collapse into bed.

I’m able finally to contemplate looking at the next issue of CF Talk, which has been sitting unattended on my desk for nearly 2 months now and is in dire need of completion.  I’m able to think about the other writing projects I was looking at before and see if I can rekindle the spark that was there before.  I’m able to focus my mind on something other than how my chest is feeling or whether or not I should stay in bed rather than move to the sofa.

I’ve one more negativity-hurdle to overcome, and that will be over after the weekend.

This Sunday sees the Activ8 Youth Theatre show at MKT take place, an event which was to have been my first opportunity to get stuck in to directing a short piece for the Youth Theatre and to benefit the CF Trust.  If I’m honest, I saw it as something of a swansong with them, acknowledging as I have to the likelihood that my involvement is being compelled by my chest to end.

Rather than a happy ending, though, it’s going to be an extremely tough one to get through.  Not just physically, although I can’t pretend that that’s not going to be a challenge in itself,  but because I’ve ended up having almost nothing to do with the finished product.  Three weeks’ of rehearsal in a 12 week term doesn’t amount to a contribution, in my mind, and the work I had hoped to see up on the stage is now more likely to bring me down than uplift me.

I wanted so much to make this something to remember – an event that showed the Theatre’s support not just for the CF Trust, but for the whole Youth Theatre, and a true showcase of the talent which has been nurtured through Activ8 over the last half a decade.  And don’t get me wrong – it is still very much all of those things.

But it doesn’t feel like it’s anything to do with me.  I feel like a passenger, an outsider, something akin to a “consultant” who’s seen parts of the process leading up to performance and had a little input, but not someone who forms part of the “team” whose talents are being showcased.

I know that people will shout me down and will be quick to try to dissuade all of my fears and make me feel a part of it, but I can’t get passed the fact that I’ve not been there for them or with them for pretty much the entire term.  This is their show and their showcase, and it’s nothing to do with me any more.  That saddens me, and it’s going to be hard, but nothing will stop me being their to support them.

I am trying to keep my air of positivity and move forward from here – and I know I will continue to progress – but I also know that this weekend is going to be a really tough one to get through.

Thanks to everyone for your good vibes, your love and prayers over the last few weeks.  They really do make a difference, and they have helped me enormously.  I shall endeavour to keep up with my more regular out-put of the past, as I will endeavour to keep myself looking up and not down, forward and not back.

Keep on truckin’.

Followers of this blog will be familiar with the various ups and down I’ve experienced over the last months since I began writing, and friends and family of mine know about them from much before then, to varying degrees. So when I say that this last Sunday gone marks possibly the lowest point I can remember, it isn’t a remark I make lightly.

More than ever, this entry in the blog is a personal one – one for me to look back on in the weeks and months to come as I look back over the trials and forward to what may lie ahead and to be able to see that I’ve come through worse than I’m going through.

Smile through it was designed as a pithy phrase to help me remember that when it comes down to it, laughter really is the best medicine, and that taking the time to remember the levity and vibrance that life gives us can turn a perpective upside down. Through most of the things I’ve been through in my life it’s an ability to laugh at myself and situation that’s really pulled me through, and having family and friends who share my often bleak and black sense of the humourous that helps beyond words.

But sometimes, even though part of you knows that you can fix it all with a grin and a giggle, your body and mind won’t let a smile cross your lips; not the glimmer of a smirk or a corner of the mouth upturned.

This is how I found myself on Sunday night.

Sitting on the edge of the bed at half-past nine, four days after coming out of hospital to renewed hope and the excitement of a new car, I found myself fighting for breath with a new sensation of pain and exhaustion ripping through my chest and as I stared almost vacantly at the floor, I felt an overwhelming desire to give up.

It’s hard to reconcile the feelings of joy I had at escaping the confines of the hospital last Wednesday with the hurried turnaround once I reached home. Aware as I was of the fact that I was by no means fully recovered, I was anxious to get back to something – anything – which even vaguely resembled normality: being able to choose what time I did my drugs, being able to sleep for hours during the day if I so wished, not having treatment times dictated to me by staff with a dozen other patients to see.

What I discovered, however, is that home can feel like more of a prison than any hospital ward. In the same way that the four walls of my hospital room started to feel reassuring and safe, home began to feel like a well-decorated prison cell, with a world of wonders on the outside.

I’m exaggerating, I’m sure – home is never really a prison – but as the weather turned warmer and sunnier, I just wanted to be outside. Coupled with our recent automobile acquisition, my sense of adventure began to take over and K and I began to explore the bounds of my stamina and the car’s performance.

Had I been more disciplined with myself and stricter in keeping myself bed-bound upon my return, I doubt I would have landed in the position I did on Sunday night. But then, had I not landed there, I don’t know if I’d be on the up-slope to recovery I find myself on now. Sometimes you need to plumb the depths before you feel the benefit of the clean-aired heights.

Sunday afternoon took the biscuit, really, as K and I set out for a pleasant Sunday drive around the countryside to enjoy the spring sunshine and run-in the new car. After and hour and a bit of driving, I began to feel the fatigue creeping in and by the time I got home after around 2 and a half hours out of the house, it was pretty much game over.

What alarmed me, and what caused the moment of pause on the edge of the bed as I got myself ready to sleep, was the new sensation within my chest which burst into prominence.

Back in the days when Emily had her knackered old blowers (not the shiny new ones she has now), she used to write in her blog about her chest throwing hissy fits and causing enforced rests and lie-downs. I thought I knew exactly what she meant, having felt the overwhelming tiredness and sense of exhaustion after over-exertion. But sitting on the end of the bed last Sunday, I realised that I hadn’t even touched the sides of it yet.

I’ve had chest pain before, usually pleuritic, occasionally pneumothorax-related, but always of the same variety: a sharp, stabbing pain the side of the chest, usually around the lining of the lungs, where one can imagine a large chunk of infected tissue rubbing angrily against a chest wall which is struggling to keep it in check.

This, however, was something entirely different. This time it was a kind of internal stinging sensation which felt like the inside of my lungs had been rubbed raw with a grater and immersed in a vat of TCP. And unlike the pleuritic pain, there was no sign of it fading away with a few deep breaths.

As I laid in bed on Sunday night, with K lying next to me and sensing my discomfort and utter dejection, I tried to put into words what was going through my head. Sadly, I am not the same wordsmith orally as I am on paper, and in the heat of the moment, my vocabulary failed me.

I sat and stared straight ahead of me and desperately tried to recall a time when I’d felt lower – more hopeless and filled with sadness. For a second, a fleeting moment at my parents’ house in the build up to Christmas after my hospital admission last November entered my head, but that had lasted just a few seconds and this decidedly not so.

The truth was, I was tired. Tired of the fighting, tired of the same old stories, the ups and downs, the scrapes and pickups, the ever-turning and tightening vice around my chest. I was tired and I just wanted it all to go away. Nothing anyone could say could make a difference – something K seemed to instinctively know and chose to observe.

Then the strangest thing happened. As I sat and contemplated the worst of scenarios, I thought about my brother and what he’s been through. Not only the completion of 11 weeks of impossibly hard training and testing and fighting for the commando course, which he had just last week reached the end of and grasped with proud hands his Green Beret, which will go with him everywhere from now on.

But also the times he’s fought through everywhere else: through his year out in Tonga, when he so nearly gave up and came home after just a couple of months, but stuck it out and had one of the most remarkable life experiences anyone can imagine; through his year at Sandhurst, fighting through test after test, performing top of his class, but never letting anyone know how truly hard work it was; right through to his running of the London marathon last year on a few week’s training and the number of people he inspired to sign up to the organ donor register, all because he told them he was doing it for me: I still bear the medal he took home, framed on my wall with his inscription, “Live The Dream” underneath.

I thought of all of these things and I saw myself reflected in his eyes and I realised that I couldn’t give up. What kind of message would that send out to my friends, my family, worst of all my Godchildren, my two fabulous, wonderful young boys who I vowed nearly a decade ago to watch over, guide and protect in the name of God? How could I possibly decide that enough was enough, just because I was tired and it was hard?

As images of my brother washed over me, seeing him at his lowest points of the last 11 weeks, fighting for strength through everything and finding it within himself to keep going, I knew that I had to keep going too. What’s more, I knew that if my parents had passed on to him the ability to keep going and never give up, then I must have the same genes flowing through my body, too. If one of us can, I’ve not doubt in my mind whatsoever that the other can, too.

Sunday 1st April, 2007 will go down in my mind and my history as the lowest point I ever reached in my battle through life so far. But when I look back on it, it won’t be with pain or disappointment, but with a profound sense of pride and pleasure that not matter how dark it got, I was able to see the tiniest, remotest speck of light at the end of the tunnel – and I will make it there. Sooner or later.

PS – this has taken me nearly an hour to write in one sitting and, tired and emotional as I am, I’m not about to sit and reread it for typos. If I’ve spelled something wrong, that shall be as much my legacy as the rest of the sentiments in this page. Be well xx

PPS – following the above revelation, I discovered on Monday the quote which you saw posted earlier in the week, which blew me away because it basically said everything I’ve said in the post above, but in less than 25 words. Some people just have a gift for short hand, I guess…

…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.

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.

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.