A while back at the start of the year, I was sent an email by the press officer at the CF Trust asking if I’d be willing to talk to Radio 4 about my diet and having to take on an inordinate number of calories everyday.  Being the self-confessed media tart (MT) that I am, I nearly bit her hand off.

Having spoken to one of the team on Radio 4’s Saturday Live show, I was told the following day that they’d decided not to go with that story, but that they’d keep my details on file for the future.

I didn’t realise that meant a matter of weeks – just last Thursday, JP from the show called me back to see if I was free to come to the studio in London to do a segment on the same subject with presenter Fi Glover and stick around for the whole show.

Excited doesn’t quite cover it from my side of things – I love the media: TV and radio have always intrigued and excited me and to think that I was stepping up for 2 minute 2-ways on local BBC 3 Counties to a show that people had actually heard of was unbelievable.

So I roused myself at 5.30am on Saturday morning and stumbled around to do my morning dose of IV’s before I left for the studio in my Dad-powered taxi at 6.45am.

I did manage to dose on the way down a little bit, but arrived at Broadcasting House – yes, THE Broadcasting House!!! – at 8.15am feeling every so slightly very nervous.  I’ve got so used to doing local radio and press that it didn’t occur to me how nervous I was going to get going on a big national radio station.

As it was, the whole thing was fab.  I was on the show with Fi, the presenter, the regular poet they have on every week, who was a really good giggle and an Asian music producer who was fascinating to talk to and is doing some really interesting work in fusing musical sounds and styles from all over the world.

My section of the show – which I think ran about 10 minutes, although I totally lost track of time – went really well, although I was annoyed with myself for tripping over my tongue at the beginning.  I covered all the bases they wanted covered for the piece and even managed to get in a plug for Live Life Then Give Life and organ donation in general.

The show is up on the website on listen again all week, so check it out – I’m  on from about 5 minutes in.  Click here.

Further to the on-air discussions. though, I also got chatting to Fi after the show about Laughter for Life and she has promised to help out with publicity if she can – passing our details to a FiveLive producer and to the London Radio listings people, which should carry a bit more weight than just randomly attacking them with a press release.

As exciting as it was, it has also made the start of IV’s even tougher going, since my body disagrees mightily with Meropenem anyway (the drug I’m on) and  adding into it early mornings and irregular sleep patterns doesn’t help.

I know I’m going to have to take a few days to recover, but annoyingly, it’s hard to tell how much of this is IV-related and how much is down to over-work/exhaustion.  If I knew that, I’d be able to look after myself a bit better and space my workload, but as it is I have to assume the worst and take it as easy as I can for the time being till things pick up again.

Still, I was on Radio 4!

Nothing like a break through in planning and organisation of a big project to stimulate the happiness and reenergise you (see – it’s not just the steroids…).  As of this moment, tickets for Laughter for Life, hosted by Bill Bailey and featuring Dara O’Briain, are ON SALE.  You can buy them here

This is undoubtedly the coolest thing to happen this week, and will totally keep me charged full of positive energy until at least six o’clock.  And then I’ll come back here, read my excitement and get excited again.

But you must HURRY, because this is a fabulous evening of hilarious comedy from fantastic comedians (and other such hyperbole) and it’s going to sell out fast with a capital FAST (not hyperbole, actually true).

So if you’re really my friend, buy some tickets, otherwise I won’t like you any more.  And if you want to be my friend, buy tickets and I promise I’ll like you.

So there.

Did I mention it would be funny….?

Today has been a really hard day.  Despite being exhausted by the day’s activities yesterday – heading down to London and back, with an hour and a half’s meeting in the middle – I slept terribly, hardly managing longer than an hour asleep at a time, and waking up this morning feeling totally drained.

I knew that the meeting was likely to take a chunk out of me, and need me with a need to recouperate, but I wasn’t expecting to be bed-bound for three-quarters of the day.

Even now, sitting in the study writing this I know I’m not right – my brain isn’t really turned on and my chest is protesting.  I need to do some physio, which may help the chest, but I don’t know what I’m going to do about my brain.  I’m just waiting for my neb to work before getting some physio done.

I’m supposed to be going in to work tonight and I desperately don’t want to miss another week, not with the show starting to loom and only 2 weeks till half term.  I’m having all sorts of horrible thoughts of missing out on the whole term again and not being able to do anything for the show, not to mention landing Suze in the proverbial by missing sessions at such short notice that she doesn’t have time to geet cover or re-plan.

It’s just not fun – my body is rebelling and my mind wants to go with it and I’m fighting tooth and nail not to let either of them win.  And yet, I’m stuck on that see-saw between doing what I want to do and making my chest worse – there’s no telling whether it will or not.

The smart part of my brain is telling me not to go into work tonight and to stay home, stay in bed and get some rest, but the fragile part of my brain is telling me that I need to get up and out of the house to avoid getting chronically cross with myself and my chest for not supporting me in the things I want to do.

I don’t want to be here now – I don’t like being back in this place where everything I do has to involve a sacrifice somewhere else.  I want to be able to book myself to do something on two consecutive days and not feel like a slave to the whims of my lungs.

I know I have to accept that that’s exactly what I am now, and that I have to learn to work with them as much as I can for the time being until I get a shiny nw set which will let me do what I want when I want.  There’s really no point in me sitting here harping on about how poor old me can’t do what  I want to do and isn’t life unfair, because it’s not like I didn’t know that already.

Pull yourself together, get a grip on the realities of your situation and stop letting little things rock your boat.  Focus on the good things, do what you can manage to do and forget about the rest of it – there’s no point pining for something you can’t do, you might as well make the best of what you can do.

After my somewhat self-pitiful mini-rant last week I seem to have slightly dropped the blogging ball and not had a proper update – the longest I’ve gone without an update since I started this blog I think.

I blame many things – anything really that absolves me from accusations of being too damn lazy/forgetful to write something interesting on here – and deny all such mutterings from the kids in the back.

Still, things have picked up mightily since last Thursday – I knew it would only be a blip, and it was, albeit a two-dayer, but a blip none the less. I struggled for a couple of days to shake of the negative thoughts and not-so-nice images in my head, but I’ve got a pretty good daemon fighter in my head after all these years, so I get back on top of things pretty quickly.

This weekend was a weird one, because I had lots to do but couldn’t escape the fact that during the week I’d actually been far too busy and needed to take a bit of time to myself to make sure that I stopped myself from sliding down hill.

I headed to Oxford on Friday to see my physio and we made plans with my CF nurse to start a course of IV’s at the end of this week. They wanted me to come in, onto the ward, for the first week of the course, but I managed to negotiate a stay of execution until the week after to ensure that I didn’t have to miss another week of work. (I’ll now be in hospital for half-term week, so not nearly as bad as going in next week).

It also means that I can still attend the meeting I’ve been invited to at the Department of Health next Tuesday, the subject of which is sadly under wraps at the moment, but I’m sure I’ll fill you in on at a later date.

Today, however, I was coincidentally down at the DoH as well, meeting with the team who deal with oxygen provision to discuss the problems that I and other PWCF have been having with the home oxygen service, mostly with relation to Allied Respiratory.

It had originally been scheduled as a meeting between all three sides, but in the end the decision was taken by the DoH to have a separate meeting with Allied, which the CF Trust will also do, to air the concerns directly.

The purpose of today’s meeting was to express as clearly as we could the importance of so-called abulatory oxygen to PWCF and their needs for portable O2.

It was actually a really positive meeting, with the two representatives of the DoH really keen to take everything on board and correct things. It’s fair to say that things are a good dal better with Allied than they were even 3 months ago when I first started using them, but it’s important for the issues that did come up to be properly looked at to ensure nothing like that happens again.

I’m confident following the meeting that good things will come from it, including a commitment to looking at lighter, more portable forms of oxygen to make getting out and about easier for people like me who find the cylinders a weight.

I also hope that the feedback with regards to customer service is picked up on and driven home to the company, because their staff training is simply appalling.

The meeting did exhaust me, though, so it’s an early night and restful day tomorrow on the cards.

Ah, well, you can’t have it all going your own way, can you?

After the best part of a week spent luxuriating in the delights of life – happiness, exciting prospects, wonderful surroundings, beautiful people and all the rest of it – I knew that sooner or later things would come crashing back down with a bump.  And bump they did.

Yesterday, as I hoped, we went down to Mazda to order our new car and things seemed to pass off without a hitch.  But low and behold, I get back home this afternoon to find a voicemail message from the dealer telling me that Motability won’t insure an under-25 on a catagory 9 car – so I’m 4 months too early to get the Mazda 6.  How ridiculous is that?

Having phoned Motability, they’ve said I can appeal it in writing and they can take it to their insurers and see if they’ll make an exception, but it seems crazy to have to go through all of that palaver for the sake of 4 months!

But actually, although the whole car thing is a bummer, I have to confess that that’s not really what brought me down this week.  What really dragged me off my happy perch was a visit to Milton Keynes College on Thursday afternoon.

K is doing an access course to get her set for uni entry in 2008 and had to enroll officially before her class on Thursday night, which meant we had to go down in the afternoon and do the enrollment necessaries.

I suppose I should have thought about it ahead of time and prepared myself for it, but I didn’t.  The surprise element may have been a factor in my difficulties, but I can’t blame that entirely.

The problem, largely, is being around groups of teenagers and young adults, hanging out in corridors as they do and being themselves at their supremely judgemental young ages.  I know that this is a MASSIVE generalisation and that not ALL teenagers are hugely judgemental, but I remember being a teenager, at school, and what I would think of people walking past me in the corridor and how much we used to jump on anyone or anything that was “different”.

And, for the first time since my health dipped and O2 became a big part of my life, my worst fears came true – I felt like a total freak.  It didn’t help that we were forced to walk almost the entire length of the campus between two departments we needed to see, which had me not only navigating through huge throngs of students, but doing it even more breathlessly than normal while lugging one of my really heavy black O2 cylinders with me.

I also know that most of the negative vibe I felt I was creating almost entirely within my own mind, but that didn’t make any difference to how I felt, or how I feel about the experience.

It was supremely negative – something which I’m not very used to in my life.  Almost any situation I can look at, take a spin on and come up with a positive side, or a brighter perspective.  Even this blog is titled after my attitude to whatever life chooses to throw at me.  But for the first time in a very long time on Thursday, I felt small, insecure and very, very different.

What made it all the harder is that I’ve spent so long now building myself up and repairing the somewhat fractured self-image I had in my final years at school that I don’t have the coping mechanisms to help me through feelings like those.  I seemed to go into a sort of semi-shock, no use to man nor beast for an hour or so.

I was only lucky in that I had to go straight on to another meeting, this time on friendly turf at the Theatre with Rheya to go over our video shoot, which managed to occupy my brain long enough to push the negative thoughts from my head and start me off on a clean bill when I got back to my own space.

I suppose what I have to take away from the situation is a knowledge of how bad it can get.  Although this may sound mightily pessimistic on the surface, it’s important to me and actually something I find quite positive.  Life is all about the ups and downs and I’ve now got a whole new barometer  for the downs – college on Thursday was tough, and way beyond anything I’ve experienced like that for quite a while. But that also means that i’m unlikely to find another experience like it for a while, either.

And when I think I have, I can just remind myself how bad this was, and almost immediately make myself feel better that it’s not that bad.

I was saying all through the ups last week that I was enjoying them because you never know when the downs are going to come in the roller-coaster of life, and having them to cling to when the week’s got rough has made a big difference.  Where once I would have been bummed out for days by an hour’s worth of bad experience, instead I can focus on all the good things that have happened and are still happening and turn my face away from the rubbish that I don’t need on my mind.

Enjoy the good times and remember the bad – just don’t let them rule your thoughts.

Tuesdays are traditionally oone of those nothing days, aren’t they?  They’re not Monday, so there’s no real reason to hate them, but neither are they Friday, with the joy of an impending weekend, nor Sunday, with it’s laid back, pipe-and-slippers feel.

So it was a wonderful turn up for the books yesterday when we seemed to have a belated Christmas of good tidings all tumble into our laps over the course of a happy, exciting, smile-making morning, afternoon and evening.

First thing in the morning, we kicked off with a wonderful double-whammy for K where in the space of 30 minutes she discovered not only that she had she been accepted on her college course – a 12-month access to healthcare which will set her up to head to uni to study Speech Therapy next year – but also that she’s been granted an interview for a job which would fit both her and our needs perfectly.

Coming directly on top of that, I had a HUGELY productive morning working on the Laughter for Life show, getting to grips with a number of pressing issues.  Most unbelievably generous and fantastic for us was the agreement of Steve at Tin Racer, who do all the design work for CF Talk, to design the programmes for the night for free.  Not only that, but he also offered to talk to his contacts to see if we can get it printed for free, too!

After beavering away on all things funny for the morning, we then popped out to Mazda to test drive the Mazda 6 – a proper, grown-up car which I have to confess I’ve rather fallen in love with.  I’ve been looking to change my current car on the Motablilty scheme since November, when I realised that in order to stay mobile when I’m less well, it may be better for me to have an automatic gearbox, to take away some of the physical exertion of driving.  It now looks like we’ve found the right car – and may well be off to order it tomorrow!

On top of all of that, K then started her college course in the evening (cutting it fine on the admissions front, MK College…) and came through the evening unscathed and looking forward to what the next 12 months hold academically.

I spent the time she was in college hanging out with a friend who I haven’t spent a lot of time with for ages and we caught up.  Adding to the Super Tuesday feel, he was filling me in on his new relationship (early stages, but hey, it’s still a relationship) and I couldn’t have been happier for him.  I know he’s feeling a bit conflicted about it all at the moment (loooooong story…) but I think it’s fab and he should enjoy it!

Every now and again one of those days come along where everything just seems to go your way.  So often in life we can only remember those days when everything seems to go against you, so I’m determined to hold on to the memoryof my Super Tuesday and use it in future to blast away the cobwebs when I’m starting to doubt my productivity or the wisdom of things.

Everyone should have a Super Tuesday at some point, and when you do, make sure you lodge it in your memory and share the good news with all around you.  Nothing like a ray of sunshine through the snow to make people smile.

Believe me, I know how strange this sounds coming from someone who’s spent the last two months writing about the various different ups and downs in his live, but just now I’m finding it unbelievably hard to find the right words to describe just how happy I’m feeling.

This is one of those periods of life that just make you sit back and smile – to count your blessings and realise that the world is not really a big, evil place that intent on wearing you down, but rather that if you put yourself in the right position to be the master of your own destiny and you look at the world from the right perspective, things will sooner or later start to swing your way.

I can also appreciate how bizarre it might sound for someone who is currently waiting for someone else to die so that he can have a chance of a fresh, new tilt at life to even begin to decribe himself as the master of his own destiny.

But success or failure, good or bad, up or down is all a matter of perception.

Paul McKenna, in numerous published writings (not least Change Your Life in 7 Days, which I would recommend to anyone, even the most sceptical of self-help depreciators) cites the words of Thomas Edison when questioned as to how he felt after failing for the 700th time in his attempt to invent the electric light:

“I have not failed 700 times. I have not failed once. I have succeeded in proving that those 700 ways will not work. When I have eliminated all the ways that will not work, I will find the way that will work.”

Right now, in as much as these things matter to me, everything is going my way:

I’m back living at home in my lovely little flat with my girlfriend whom I’m very much in love with and I’m honoured to say is very much in love with me.

I’m working on 3 projects which not only motivate and excite me, but also give me aims, objectives and reasons to keep well.

My chest is behaving exactly as I expect it to.  It’s not ever going to fire on all cylinders again, but that’s why I’m on the transplant list.  All I can ask it to do now is support me as best it can until such time as God sees fit to call time on these knackered old blowers and give me a fresh set.

I’m surrounded by people whom I love and who love me back – my friends are fantastic and don’t ever make me feel bad for not being able to join in  things, nor complain when I pull out of things at the last minute; my family all go out of their way to do whatever I need of them, no matter how little or unreasonable; people I work with make huge allowances for what I can and can’t do and never bat an eyelid or make me feel like I’m stretching their patience (even when I know I must – I stretch my OWN patience with some of the last-minute turnarounds, it can’t be easy for others to deal with).

Every once in a while all the pieces in your life seem to align just so – like the planets and the sun, or the cogs of a machine – and for a moment life seems just right.  And it’s so, so, so important to seize that moment, to recognise it for what it is: fleeting perfection of it’s own kind which will last but a flicker, but if you see it and grasp it, it will last forever in the memory.

I’m under no illusions that this will continue unabated; I know there will be trouble ahead – harder times, darker times, more challenging and less fun times, but damned if I’m not going to enjoy the good stuff while it’s here.

Like the song says: while there’s moonlight and music and love and romance, I’ll be the one on the dance floor.

I’m sitting here tonight feeling very tired, but not shattered and still with some energy left in the batteries, which is a big step forward on last week, when come mid-way through Thursday afternoon (following the Youth Theatre sessions on Wednesday night) I was completely exhausted.

The sessions were great yesterday – we finished casting all the pieces, which is a job that remains just as difficult no matter how many times you’ve done it before, how well you know the people you’re working with, or how much preparation you’ve done.  As per usual, Suze and I spent a huge chunk of time in the session with people coming in and out to read for us.

What made it particularly difficult this time around was the strength of the group and the strength of the material.  We want more than anything to make sure that everyone who is coming along this term, whether a new member or an old hand, gets a chance to really stretch themselves and do something which is going to challenge them.  With this final round of casting, I think we’ve achieved that and I’m looking forward to the rehearsal process immensely.

This week was also particularly good because I got to hear my chorus piece in the mouths of the group and see whether it worked or not. I’m pretty chuffed to say it did – and I’m always amazed at the qualities that a cast bring to my writing over and above what I’ve written.  It’s exciting to see something you’ve written coming off the page and being performed – doubly so when it “works” and, for comedy, when it makes you and other people laugh.

I managed my energy levels a lot better this week than I did last week.  I used my O2 a lot more in the session, making sure I was on it whenever I was sat down – either at the side of the room during an exercise or for the script readings and other parts of the session, too.  I also took along snack food and drink to keep my energy levels up and ate well before I left, too, to make sure I made the most of my time there without exhausting myself.

It’s an annoying process to have to calculate your energy expenditure before doing anything and working out what is an isn’t possible, but it’s also a part of my life now that’s not going to change until my transplant, so there’s no point griping about it.  I’m a lot happier knowing that I’m getting to grips with it and can see potential trouble-spots far enough ahead to compensate for them.

Thursdays are now my designated “off” days, to allow for the fact that if I do over do things at work, I can spend the whole day in bed if I need to.  My diary is always clear on a Thursday now, and it will remain that way all the time I’m still working at the sessions to ensure I can give them my all without having to worry about the impact it will have on “tomorrow” and having to cancel or rearrange plans.

Because of that, I’ve actually done very little today, but it’s been nice to chill out a bit, since I’ve spent most of the week so far busying myself with my myriad diffferent tasks in the study.  I’m really enjoying being so busy and having so much on – particularly things that I can do from home without having to worry about expending energy going out and doing things.

More on my current projects as they develop, but lots of cool things happening, so keep ’em peeled.  Offers of help always appreciated (Rob) and likely to be taken up – anyone know any well-known stand-ups we can call?

Today has been just as productive as yesterday, but also HUGELY more exciting because I officially climbed aboard a project being run by the Live Live Then Give Life campaign putting on a comedy night at the Mermaid Theatre in London in March.

The history to the night is quite long and convoluted, but mainly involves Emily getting a phone call a while back from Bill Bailey, who’d been told through the grapevine from a reader of her blog that she was a fan and had been having a hard time.

Now, there’s a very funny story here about serial-schmoozer Emily getting hideously tongue-tied and not being able to form sentences, but I wouldn’t like to embarrass her, so I’ll leave that bit out. Oh wait….

Anyway, after chatting to her for a while, Bill apparently succumbed to what many people have come to know as the “Emily Effect” – that is, having spoken to a remarkable friendly, eloquent, funny, determined and energetic (in speech, at least) young woman about all the issues on which she campaigns, he offered to do whatever he could to help.

Some months later, Emily has decided that now is a good time to go get some new lungs (I’m told they’re 2007’s must-haves) and left her LLTGL partner-in-crime Emma high-and-dry staring down the barrel of a show in 6 weeks time with a whole range of “To Do’s” still “To Be Done”.

So, shining my armour and mounting my steed (yes, my steed!), I fired off an email to Emma gallantly offering my services as Production Manager extraordinaire to fill any gaps she may have.

Now, there must have been some sort of mis-communication here, because Emma and her wonderful, throw-your-hand-in, get-stuck-in, jump-in-the-deep-end husband Brad seem to have developed the mistaken impression that I was actually offering to help them out and do some work.

Clearly, they don’t know me well enough to know that when I offer to help it’s nothing but an empty gesture and what I really mean is I’ll be happy to sit on my rump in bed at home and watch Bill Bailey DVDs and tell people how funny he is.

Still, being the awfully polite person I am, I suddenly felt like it would be terribly improper of me to point out their error, so it looks like I’m on board…

I really don’t know how I get myself into these fixes, but now I’m here, I supposed I’ll just make a fist of it and see what I can’t do to make things run a little smoothly.

Right now there’s all sorts of bits and pieces remaining to be organised, including nailing down who exactly is going to be on the bill.  Through Bill Bailey’s management we’ve aquired a strong line-up of fresh comedians willing to entertain the masses, and we’re still hopeful of getting a few last gasp names to pop along too.

I’ve got my list of To Do’s passed down and am liasing with the venue and management about technical requirements and other such things, as well as sticking my oar in wherever I see opportunity.

It’s looking like it’s going to be a really good evening and, more importantly, is going to go a good way to helping support the LLTGL campaign’s current objectives – of which more at a later date.

Tickets should be on sale within the next week or so and I’ll post with details as soon as they are, but for now if you’re in, around or fancy going to the Mermaid Theatre for a cracking night of stand-up, book out 4th March in your diary and watch this space!

A new era has been ushered in in the House of Oli (like the House of Usher, but hopefully not falling*) – an era of cool, calm productivity which, I predict, will reign for years to come.

Sceptics would say that it will reign until a week next Wednesday, but I’ve never listened to the nay-sayers in my life, so I shall continue to thumb my nose at them and live in blissful ignorance for the foreseeable future.

Today, I have mostly been working diligently in my study – beavering away at my newly-imported (read: bought in John Lewis) keyboard which has made my entire office set-up both more ergonomic and more fun – the clacking of keys on a proper keyboard is so much more preferable to the tapping of lap-top keys, don’t you find?

Of course, it may only be little ol’ me who has a strange obsession with the noises made by keys on a keyboard, but when you’re working life consists almost solely of one particular noise, it’s good to find one that agrees with you. Not that lap-top key noises are disagreeable, as such, they’re just not as good as…. oh stop now.

Anyway, in addition to going a good way to clearing the backlog of emails waiting for my immediate attention in my three inboxes (don’t ask, it’s too complicated), I managed to comission two articles for CF Talk, take further steps towards establishing a dedicated DVD section on the Close-Up Film website, of which I am nominally DVD Editor but have yet to really start work proper, and also got involved in a really exciting charity project happening in March, which I will expand on when I’m able.

Not only did I achieve all that just from sitting at my desk, but I also cleared a huge backlog of clearing and tidying of the stuff we brought back to the flat from my Mum and Dad’s, AND had time for a 2-hour brain-storming planning session for the video sections of the Youth Theatre show in April.

Now, those of you who followed the progress of the last show on my Myspace blog will know that the multi-media elements served to provide the toughest test of my unflappable Production Managership (it’s a word, I said so!!) and my “never rip the head off a moron” motto.

Luckily this time we will be undertaking the filming work purely on our lonesome, Suze having handed over the reigns to myself and Rheya, my counterpart in the production management of the show and soon to be co-producer, co-director of the filmed sections of the show. We have no obligation whatsoever to involve Milton Keynes College or any of their students – Happy Day!
At the flat today we spent a wonderful couple of hours batting ideas to and fro and narrowing them down to a workable length and story-line to open the show with. Obviously, it’s all mega-top-secret and if I told you I’d have to kill you, so for both our sakes (don’t forget I’m lazy) I’m going to keep my cards close to my chest. My eyesight’s not good anyway, so it’s easier to read them the closer they are.

Tomorrow, I’m aiming for more of the same, and I’m also going to try not to eat strange little badly-cooked frozen mini-pizzas for lunch. But that’s another hurdle all together…

*If you don’t know it, Google it!