Archives: Improvement

And Sunday’s show was spectacular – with a capital Spec.

Undaunted by a day spent running here there and everywhere trying to fit in as much technical work as possible and still have a chance to rehearse their pieces, all of the groups absolutely shone and truly showed the talents with which Suzanne and I have been working for the last 5 years.

In the whole process of seeing all of the kids and young people on stage, I even managed to forget all the things that were most bothering me about my input (or lack of it) over the last few months and actually take in and appreciate what a huge achievement this show has been not just for the groups involved, but for the whole creative team.

That’s not to say the endeavour didn’t come without it’s price – two days of being laid up in bed not able to do anything more than stumble to and from the bathroom and occasionally as far as the kettle for tea seems to be a pretty high price to pay, but then if it gets me through the rest of the week with no ill-effects then maybe it just proves that I’m learning to listen to my body.

Physically, I handled Sunday really badly. Intent on showing my support to the oldest group by being their for their rehearsal in the afternoon, I completely overlooked the fact that the scheduled break between tech and performance almost never materialises. Rather than getting an hour to take myself back home and recover/carbo-load for the evening, I instead found myself staying at the Theatre and “working” through it.

The quotation marks aren’t meant as a self-depreciating qualifier on the day’s activities, but rather an acknowledgement that for most of Sunday, I was a passenger. Here and there I lent a bit of a helping hand, but really there was nothing to be done that wasn’t a) already covered by someone else, such was the level of organisation or B) physically impossible for me to do.

Strangely, this last fact didn’t seem to perturb me as much as I expected it to. It did cross my mind a couple of times that this time last year I’d have been running all over the place and doing whatever needed doing, whereas this time I was simply sat on the sidelines watching others do the running, but I somehow managed to section it off from the rest of my thoughts.

I suppose it goes back to the train analogy I first wrote about here, and I clearly unconsciously managed to avoid getting on the train of negative thought and instead kept myself where I should be, making the most of the opportunity afforded to our wonderfully talented bunch of youngsters.

The last two days have been pretty tough, and I’ve certainly felt it on my chest, but I’m really hoping that I’ve handled it well enough that it’s not going to be a major set back. The problem with my cruddy lungs, though, is that you just never know.

But it’s another successful MKT production under my belt, another fantastic learning experience, and there is a world of possibilities still out there for me. Here’s hoping I find one to pick up soon.

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…

This is going to have to be a relatively short one (I can hear the cheers already), because I don’t have the energy to sit at the computer for long this evening after heading back across to Oxford this afternoon for a progress check.

Last night I reached my lowest ebb that I can remember for a long time – I honestly couldn’t remember a time when I’ve felt worse in my head about how I felt in my body.  The advantage of hitting an all-time low, however, is that there’s only one way left to go.

Hopefully, in the next couple of days I’ll be able to sit down and put into words the experience of the last couple of days, but for now surfice it to say that the bottom having been hit (stop giggling at the back), the upward spiral is now unfolding.

At Oxford this afternoon (which is a very comfortable drive in the new Mazda), my lung function was a pretty static 0.75/1.35 –  not very impressive, but equally not too concerning, either.  The docs made the, frankly not very difficult, decision to keep me on my current IV’s (gent and cef for those who are marking the card) for another week and to get me back in after Easter to see how things are going.

I had more Gent levels done today, which is a fairly easy process of 2 blood draws spaced an hour apart to get a pre-dose and post-dose peak and trough level for the drug in my blood stream.  Gent can have some pretty dodgy medium- and long-term side effects if given in too higher doses, so it’s important to make sure levels are checked regularly.

The next 24-48 hours is going to be taken up with almost total rest, as I’m hoping to head to London on Wednesday to fulfill a prior commitment which means a lot to me and I really don’t want to miss.  Following which will be another 48 hours enforced bed-rest on Thursday and Friday, for which I’ve already cleared my diary.

Fingers crossed everything has now turned the corner and is on the up.  Perhaps sometime soon my life might return to normal – or at least I’ll get used to whatever my new version of normal is.

…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.

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.

Sometimes people really make life hard for themselves – and they don’t seem to realise how much they’re contributing to it themselves.

It struck me watching the BBC’s new Fame Academy thing for Comic Relief first off. Every night they all step up into the “circle of fear” to perform slightly out-of-tune, glorified karioke versions of wel-known songs to varying degrees of success (and even I’ll admit that Ray Stubbs had me smiling tonight with his version of “Lola”). But what kind of a mind-set does it get you in to call your performance space the “circle of fear”?

If you want to ward off your nerves and give of your best, you need to be feeling positive and confident when you step up to the mic. Telling yourself you’re stepping into the worst 12 feet of space in a building is hardly gearing yourself up for success, is it?

But that’s not the thing that’s lead me to this. What’s bothered me tonight is reading another blog of a lady who says she’s “not coping” with all the things in her life.

She lists all the many things going wrong with her – some unavoidable, some unbelievably sad and some which, to me, are a matter of pure perspective.

Some people – and this isn’t aimed merely in one direction – don’t seem to know how to let things go. They like to wallow in their failures, their mistakes, their foibles and to make sure everyone else knows how much they are suffering.

You know what? We all are. We all have our own daemons, our own battles to fight, our own mountains to climb. Bad things happen – that’s a part of life.

But the measure of a man – or a woman, or a child – is whether he can take the knocks on the chin and get right back up, look life in the eye and say, “Is that all you’ve got for me?” It’s not easy, but neither is it meant to be – nor should it be. Where is the joy in victory if you’ve not had to fight to get it?

Sometimes you fight and sometimes you lose, but there’s no good to come from dwelling on your losses. That’s not to say you can’t learn from them, but you’ve got to take your lesson and move right along. A rolling stone gathers no moss, it’s said, and why open yourself up to being over-taken by weeds when you can keep on moving and break free?

Blame is the hardest thing in the world to accept, yet some people choose to heap it on themselves. Why go through life carrying a burden that you’ve given yourself? Come on, life gives us enough to carry on our own, there’s no point adding to it. Blaming yourself for things you can’t change is a surefire way to get yourself into a vicious circle of personal degradation.

I don’t mean to sound like I’m belittling people’s problems, nor do I intend to suggest that I’m forever rosey and never have my dark days – anyone reading this blog over time will know how much I’ve struggled. I merely mean to suggest that sometimes, you need to offer yourself a fresh perpective on your situation – to look at it from a different angle and see if the insurmountable is actually just really f***ing hard.

“Fate doesn’t hang on a wrong or right choice,
Fortune depends on the tone of your voice.”

Amid all the hullabaloo (gotta love that word – never thought I’d use it here!) surrounding L4L, I have actually been looking after myself, too, you’ll be pleased to hear.

In fact, I was booked for a check-up at clinic today.  I popped along, with K in tow for waiting-room entertainment, and saw all the necessaaries, who all seemed to be buzzing about my appearance on Radio 4 and/or the upcoming gig.  It was almost like a taste of celebrity…

But most importantly, things went really well.  Off to a cracking start when I weighted in at 52.6kg – the heaviest I think I’ve ever been at clinic.  According to my notes I’ve put on a kilo and a half in a month – pretty good going!  Especially considering a week of that was spent in hospital, where eating enough calories in a day is more like a carefully managed game of skill than a diet-plan.

While I was up there, since I was due to start back on my TOBI neb (a nebulised form of the antibiotic Tobramycin), I asked them to do a check on my lung-function before and after, as the last couple of months I’ve had of TOBI (it’s taken on a month-on, month-off basis) I’ve noticed my chest getting tight after a dose and I wanted to check it out.

Sure enough, my before and after L-F showed a drop from 0.7/1.4 to 0.6/1.3, which doesn’t appear overly significant, until you work out that actually what shows up as a 0.1litre change on paper calculates to a 14% drop in the “real world”.  And I challenge anyone to lose nearly a 7th of thier lung capacity and not notice.

So after a quick conflab, the powers that be (that’s my CF nurse and Doc B) sent an order to pop me on a ventolin neb to see if it would relax my airways back from the TOBI.

I haven’t taken ventolin in years, and even then it was only as an inhalor, not nebulised, so I don’t have a great deal of experience with it and didn’t know what to expect.

What I didn’t expect – at all – was to find that after a single 2.5mg dose, my L-F jumped to an eye-watering 0.9/1.6 – a scale I’ve not reached in over a year!

To say I was happy is to do understatment a disservice – it’s unbelieveable that a quick 2 minute neb can make such a difference to my breathing.  But more than just the numbers on the page, I really noticed it in my freedom and ability to breathe and walk and just generally not feel breathless.

In  fact, there’s a good story that will show you how good it was.  When I got up to leave the ward after the trial, I switched from the hospital-plugged oxygen supply back to my walkabout tank and wandered up the corridor to Pharmacy, from where I then walked back to the car with K, had a 5 minute telephone conversation, walked back to pharmacy, returned to the car and then popped quickly back inside for a pit-stop before we left.

When I finally got back to the car and switched to my “driving cylinder” (long story), I discovered that I’d forgotten to turn my walkabout cylinder on when I left the ward.  So I’d spent the best part of 45 minutes walking up and down and all over without once noticing a shortness of breathe and questioning my oxygen supply.  What’s more, I actually remember noting to myself how I seemed to be walking faster than I normally would without noticing any adverse effects.

You don’t get much better than that.   Consider me not only well chuffed with my day’s activities, but on a personal high both physically and mentally.  Things have a way of turning themselves on their head – it only takes a bit of positivity and something to add a bit of meaning and purpose to your life.

I’m always loathe to jump up and down and rave about having a good few days without any enforced bouts of bed rest.  Well, let’s face it, I’m always loathe to jump up and down full stop any more.  All right, I’ve ALWAYS been loathe to jump up and down.  Even when I could.

Still, it seems that the last few days have been particularly encouraging for me – a full day’s shooting all day Saturday, a nice, restful Sunday which still managed to include a trip to K’s parent’s for a lovely Sunday/Brithday lunch for her Mum and a middlingly-active day today getting K sorted for her new job and fixed up with sexy new specs.

I seem – seem – to have found a nice equilibrium with my energy levels for the moment – succeeding in balancing a need for restful periods with achieving the most important goals of the day without running myself completely into the ground.

I’m hesitant to be fully excited until I get a couple of days further into the week with no repercussions, but so far, so good.

The day’s shooting on Saturday was really good fun.  Although we had quite a bit of time pressure to ensure we were out of the public areas of the Theatre by the time the matinee audience came in, we actually got all of the stuff we wanted relatively quickly and with very few hiccups.

We did, unfortunately, realise later that we’d miss-shot one scene and made a fatal error known in the trade as “crossing the line”.  This is far too hideously boring to explain in full to anyone not familiar with the term, as it’s a bit of a pedantic, anally retentive technical thingy to look out for, but unfortunately it’s one thing that can completely ruin a film when it’s all cut together.  Most of an audience would never be able to point it out, but would undoubtedly know there’s something wrong with what their watching.

Luckily for us, the scene in question with the minorly-major technical hiccup (or f**k up, depending on your view) is one which we still have to shoot a couple of additional shots for, so shouldn’t be too much of a problem to go back and rectify.  Fingers crossed.

Today I spent another morning in front of a camera, this time giving an interview for a student film for Bournemouth  University’s journalism programme about transplant and life on the list, as well as what can be done to increase donor rates.

It’s nothing major, but I was put in touch with the filmmaker through UK Transplant and as I said at the time I agreed to it, any publicity is good publicity.  I think it’s particularly good because there’s a chance it’ll be seen by a good number of students at the uni and that the message it sends out will get through to one of the most campaign-aware sectors of the population.

There’s huge amounts of resources sitting around university campuses in way of students who can be incredibly vocal about any subject close to their heart.  Make just a few of them aware of the importance of having people signed up to the organ donor register and there could be a whole new wave of Live Life Then Give Life supporters coming through the system and shouting louder than we have before.

Arrangements continue apace for Laughter for Life and I’ve spent a large chunk of the day on the phone to various people and rapidly swapping emails to finalise press strategy for the week, with local MK releases going out tomorrow.  Our national campaign should begin in earnest this week, too, although we’re a little disappointed that Bill’s not able to help us with shouting from the rooftops due to his already manic schedule.

That said, we’ve got an entire 3-hour gig lined up for Sunday night with some of the countries top comedians donating their time for nothing and for which we’ve already sold out a 600-seat Theatre, so it’s pretty hard to be unhappy about anything!

Here’s hoping the rest of the week stays as smooth as today.  We’ve got a few auction lots to finalise and gather, as well as the press and media work to cover.  I’ve got some technical gubbins to double check and artists to liase with.  We’ve got an auction to plan and sales to figure out, and I don’t even know what I’m wearing yet!

Gosh, it’s all go!

Today has been much better – certainly a little more stable and les energy-crazy.

I have taken what struck me as a very sensible and mature decision at the time to not accompany my parents and K to the Theatre tonight in light of the fact that we’re shooting for the Youth Theatre film all day tomorrow.

With my energy levels being as unpredictable as they are, it’s clearly a good idea for me to rest up today (tonight especially) and make sure I’m on top form for the shoot.  It’s a bit of a drag and I know K would have mucch preferred that I was there, too, but if I’m going to get out of my vicious circle of lustre-lacking, then I’m going to have to make unhappy choices now and again.

It feels like we’re accelerating incredibly quickly towards Laughter for Life now – it’s just 8 days away, which seems insane.  There still seems to be a remarkable amount to do but while I would normally be ever so slightly panicked by now (well, a little) I actually feel confident that this is all going to come together and pass off marvellously.

It’s promising to be such a fun event, with such great support and we can only hope that not only will everyone have a great time on the night, but also that we manage to really push people’s awareness of Organ Donation, whether through people’s attendance at the show, or through the press and publicity the event gets.

It feels a bit odd going into the week before the show being really aware of all the avenues of publicity we’re still pursuing – both locally and nationally – but with nothing yet confirmed.  My diary for next week is pretty empty at the moment, but it may well start to fill up rather quickly from early on Monday, when press releases and things go out and we really hit the campaign trail.

Of  course, it could be that none of it comes off at all and we end up with next to no coverage, but let’s hope that’s not the case.  Even if we don’t get as wide coverage as we’d hope for, the main thing is the event itself and the money it’s raising to help transplantation in the UK.

It’s going to be a hard week this week, balancing the work that needs to be done with the rest that needs to be had to make sure I’m in top form for the weekend and the night itself.  It’s going to be a long one, and likely a hard-working one, too.  But it’s also going to be one I won’t forget for many, many years to come.