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.

I’ve never really but much truck in jinxes, or quirky twists of fate, but I’m struggling to convince myself that I haven’t jinxed myself all over again.

It seems that whenever I talk about what projects I’ve got going on and what I’m getting accomplished and what I hope to achieve, I take a huge dip in the form the next day.  It happened back in March/April when I was excited about pushing forward after Laughter for Life, and it’s happened again this week, after I proclaimed my success at getting back to writing.

Ironic, really, I suppose, considering I wrote so specifically on the ups and downs of life and how I could cope with whatever was being thrown at me.  People call it tempting fate, something I’ve never really agreed with, but am starting to question my conviction.

The concerning thing about times like this is that you never quite know where it’s going.  It’s the same for most things in life, I suppose, but it seems all the more important when reserves are low and the littlest molehill can so rapidly escalate to the mightiest mountain.

The last couple of days I’ve been under the weather – nothing too drastic, just very tired, low on energy and slightly achey.  My head is swimming a bit with a feeling like I’m getting a cold, but I know that it’s more than likely just hay-fever, which I suffer from every year and always starts out feeling like I’m getting a cold.

So more than likely, there’s nothing really wrong at the moment – my chest, although slightly more productive than usual, isn’t causing me significant problems, and the only real “symptom” of anything wrong is a little glandular swelling, which is more than likely hay-fever related.

That knowledge, however, doesn’t work to exclude the possiblity that things could be on a downward slope.  More often than not, in the past, all this would hang around for a few days and make me feel a little rubbish, then sort itself out and go away.  Now, though, everything carries a greater significance.

It’s hard, at times like these, not to worry about what comes next, but at the same time, my mind is bugged by the knowledge that the more positive I stay, the less likely anything is to take hold and drag me down for proper.  I don’t want to sound like a crazy “mind-over-matter” nut-job, but I strongly believe that your mind can influence your body in more significant ways than people always consider.

So I’m spending my time at the moment in bed, resting, trying to take on as many calories and possible and make sure that whatever has got me on a slow-down doesn’t become something which puts me at a stop.

Believe me, it’s amazing myself as much as anything, but so far this week, I’ve exceeded my target of 6 pages a day three days in a row – how brilliant is that?

I’ve no idea where this sudden glut of motivation or inspiration has come from, but suddenly things seem to have developed their own sense of momentum and I’m rolling along at a cracking pace and really enjoying myself, too.

It’s not just my new script that’s coming on leaps and bounds.

Live Life Then Give Life is still going strong, expanding all the time and the team behind it has grown and solidified into a (hard)core of people dedicated to improving organ donation in this country.  It’s a privilege to be involved with such a great campaign and group of people, who all work incredibly hard and really spur each other on to greater and greater things.

National Transplant Week, set up and run by Transplants in Mind (TiM) is in July and we’re all working feverishly to see what ways we can come up with to publicise it and raise as much awareness as we can.

There’s also the new issure of CF Talk which is coming together really nicely and now sits with the designers, who are currently working their very particular brand of magic on it.  I love the work our designers do on the mag and this is always the most exciting stage of an issue for me, where I hand them the copy and they come back a week or so later with some cracking imagery.

What’s always really funny about the whole process is that they are fantastically open to comments and ideas on all of the stuff they do, but there’s so rarely anything I want to change with the stuff they come up with it almost always goes to print identically to the first draft version I get sent through.  I suppose it’s a perfect illustration of a team working in harmony together to get all the elements looking their best.

I weary at the moment that it is almost always when things are rolling along at their best that the trip-ups tend to come.  But at the same time, knowing the up-and-down nature of my health at the moment, it seems all the more reason to enjoy doing all of these things while I can without fretting about the “what ifs” or the “what’s coming next”.

I suppose it’s something akin to parents trying to wrap their children in cotton wool. If you never allow your child to go out in the garden and play in the mud and put themselves at risk of germs and all the things children come into contact with then they may very well not get ill and stay more healthy than other children, but they also lose a large chunk of what it is to be a child – to explore the world and find out first hand that mud is mucky and worms don’t taste very nice.

And so it is for me at the moment.  I could easily shut myself away in my bedroom and rest 24/7, spending my days eating, sleeping and doing treatments.  But I don’t want to look back at this time pre-transplant when I’ve finally had my op and think of all the things I missed out on because I was too worried about what would happen next.

If a downturn is coming, then so be it – I’ll take it on the chin and ride it out like all the others.  I hope I can stave it off and continue to enjoy the good side of life.  But whatever happens, it’s not going to stop me doing the things that mean something to me.

For those of you who are not on my email list (you lucky, lucky people) and who may be close enough to me for this to matter, here is a copy of an email I sent out last week proclaiming my up-coming 25th birthday:

“Dear one and all,

As I’m sure you’re aware (ahem), the 25th of this month sees me notch up a quarter of a century on this planet.  Whilst that may be an ambitious target for the English cricket team, it was one that at one time or another many have believed to be beyond me.  Thanks to brilliant medical teams from Northampton (as a kiddie) and Oxford (as a growed up), I’ve celebrated many more birthdays than I may have otherwise.

Although I may not be a picture of health, I could certainly pose for happiness: I am surrounded by family and friends whom I love very dearly and who love me just as much in return (that’s you, that is!).  I’m blessed to be in a position where I don’t really want for anything more than a new pair of blowers to enjoy your company all the more.

Because I consider myself to be so lucky and to be in need of so little, I have decided this year that I would rather put all of your love and good will to use and ask you to make a donation to charity rather than buying me anything or sending me a card.

I don’t expect any huge sums, all I ask is that whatever you would have spent on me (even if it’s just £1.50 for a card and a stamp), you instead donate to the CF Trust through http://www.justgiving.com/oli25 where you can also leave me a birthday message.  Like the ad says, every little helps.

For the traditionalists who still want to make contact on my birthday, you can email me or text me instead and save not only trees, but perhaps some lives too.

And if I’ve been far too presumptuous and you wouldn’t have bothered sending a card, then that’s fine, too.  I still love you all the same.

With love and best wishes to all,

Oli
xx”

I say, sometimes a little bit of communication goes a long way.

Following my recent let-down from Allied, where I was left waiting for delayed delivery after delayed delivery, I sent off a “strongly worded letter” to them and got an almost immediate response.

Now, there’s two parts to this story – a personal and a “professional”.

No sooner, it seemed, than Allied had received my letter, they were in touch and full of abject apologies for the confusion and the misunderstandings.  And, in fairness to them, it was a very genuine and “un-corporate” apology, too.

Having explained in my letter that I can’t really carry their PD300 cylinders comfortably and really need the lighter weight PD430s, they straight away put me onto a fixed weekly delivery, commencing this Monday, of 6 PD430 cylinders to last me the week (which is more than enough) and they will continue to arrive every Monday unless I phone them to let them know they won’t be needed.

I have to confess, I’m over the moon.  To finally have access to the right amount of truly portable oxygen in quantities enough to last me a whole week of doing whatever I please is fabulously free-ing.  I’m looking forward to a new ability to do what I want by myself without the oxygen-planning issues I’ve had up to now.

What concerned me, though, was that my “solution” with which I’d been provided was a panicked stop-gap to “shut me up” and get me off their backs.  The cynic in me was squirming at the thought that if I was contented then I’d stop writing letters which get copied to the CF Trust and Department of Health.

It was important to me to make sure that it wasn’t just me that was getting the best of the sevice, but that other people in my position who weren’t so willing to speak up, or didn’t know there were other options available, can get the best, too.

To my immense surprise, and no little pleasure, I discovered that far from “fobbing me off” with the appropriate organisation, the team at Allied are really keen to improve their service and get things working as they should be – and to involve me in the process.

Already I’ve been told about a new cylinder they’ve aquired which is not only lighter than the PD430, but lasts longer, too, and it is Allied’s expressed intention to prioritise the CF community with them.

PWCF are, I think, a unique breed among oxygen users in that they are the youngest and most independent of the type of people who may need home oxygen therapy.  At the same time, they are often the smallest and weakest of the lot, too, meaning that the “portable” oxygen tanks need to be pretty light to really be “portable”.

Allied seem to have taken this on board and are working hard to identify PWCF among their patient lists to make sure they are the first to benefit from the new cylinders.  All GPs who prescribe home oxygen are suppose to add a code to the order form to indicate the medical condition for which the oxygen is being supplied.  Sometimes this doesn’t happen and Allied are unaware of a patient’s CF status.

For this reason, if you’re reading this and you’re a CF patient who receives  oxygen from Allied, you should email Sue Brooker at communication@alliedrespiratory.com to make her aware that you have CF and that you would like the light-weight cylinders.

Above all, communication is the key here.  I am actually really confident that Allied are doing all that they can to improve things at the moment – and I honestly never thought I’d see myself writing that.  But if they don’t know a person’s needs then they can’t do their best to deal with them.

As with many things in life, communication is vital – making sure everyone’s on the same page and that people can get the things they are entitled too, whether it be oxygen, money, services or anything.

Every good relationship thrives on good communication and this experience has taught me a lot about how little is needed to make a difference if you just talk to people.

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’s been, all in all, a pretty good bank holiday.

I was feeling a little run down at the end of the week – not sure why as I’m not sure I’d been massively active – so Saturday was spent very much in chill out mode not doing anything beyond reading the paper and sitting on the sofa.

Sunday I went over to Mum and Dad’s for the afternoon to watch the end of the Championship footie season, willing on the Saints to their playoff place, which they secured thanks to a handy 4-1 win over Southend (was there ever any doubt…?), after which we had a gorgeous roast, shared with my bro and his other half. It was good to catch up with them, and nice to see them again so soon after the last time, since I’ve got rather used to not seeing my bro for pretty extended periods of time.

Today’s been a bit harder, largely because yesterday took it’s toll. My Godson came up to visit with his parents, my mum having laid on her usual lunchtime spread for guests, and K and I popped over for food and games.

Sadly, my chest only lasted for about an hour after the meal before deciding that sitting on the floor playing loud, shouty games was not in it’s order of the day, so set about making me feel decidedly uncomfortable with a dedication that really should be admired.

What really hit me today, though, is how some people choose to sympathise with you when you feel unwell. My problem at the moment is that when I get tired (which I do, very easily), I very much lose my ability to put a happy face on things.

I’ve thrived – as some of you will know first hand only too well – on always keeping not just a stiff-upper-lip, but one that’s ever so slightly curled up at the edges; a mirthfull demeanor no matter the inner “turmoil”. Now, though, my reserves are depleted to the extent that any moment of flagging in the day means that the positive spin and happy vibes are the first energy-drainers to be lost.

What I think that means to people on the “outside” is that for the first time they are seeing me in a different light – I guess for the first time I look like I’m suffering. And boy do I hate it – there’s nothing worse in my eyes than other people seeing how hard things can be.

I’ve no problem with telling people how hard things can be, as long as I can do it with a smile on my face and do my best to laugh it off in the process, but when people can SEE how much it sucks, that bums me out like nothing else and there’s nothing I can do about it, because I don’t have the energy to fake it.

What’s more, some people seem to think it helpful to show/tell me how much they appreciate the shiteness of the situation. I know it’s good-natured and well-intentioned, but when people tell you that they know it must be horrible, or say “it must be really shit right now” – it really doesn’t help at all.

I’m well aware of just how completely, head-screwingly, eye-gougingly, heart-breakingly pathetic my life can be on my bad days at the moment – I don’t need someone to tell me it must be horrible. It is. I live it.

I know, too, that much of my reaction is just tiredness and not being able to rationalise the thought process, but it just seems like a spin-off of the affected sympathy you get where people try to explain that they know how you feel because they once had a cold so bad they couldn’t breathe through their nose at all, and that the doctor thought that if it carried on any longer they might need ANTI-BIOTICS!

I know it’s well intentioned, and I know people can feel awkward and that they have to say something to show their support, but please, next time you see me, don’t tell me how much you appreciate how hard my life is: just give me a hug.

The funny thing is, I know that the opposite extreme annoys me just as much: the people who try to belittle what I’m going through by comparing it to other people’s problems. The whole, “everyone has something to worry about,” line.

Again, I appreciate the attention, but actually, frankly, in a game of “How cruddy is living in your world” Top Trumps, I think I would probably take some beating. So telling me that you’ve got a friend who’s got an in-growing toenail AND has to walk the dog twice a day AND has to look after a child alll the while needing to make sure they can Sky+ the football doesn’t do a whole lot for evening out my perspective on things.

Like I said before, I know that much of this is tiredness, but the fact is that I’m a tired old grouch a lot of the time now, so I guess I’m thinking of this as a primer for how not to make me throw things at you the next time we talk. Or at least as a warning to duck once you’ve finished speaking.

I guess the whole thing comes down to the simple things in life. If in doubt, hug it out.

I’ve been wading my way through quite a bit of TV drama of late, spurred on by positive reviews in the press of all the new things like New Tricks, Hustle, Kingdom et al, and have found myself almost constantly disappointed.

There’s just something terribly formulaic and dull about British TV drama where it pales in comparison to even the most ropey of American TV product. There’s just a slickness and a freshness to the US output which I find myself yearning for whenever I park myself in front of the telly for the new “best thing” on our screens.

So thank goodness for David Suchet, Craig Warner and Colin Barr – the star, writer and director respectively behind Maxwell, last night’s dramatisation of the last days of the life of Robert Maxwell.

Not only was it brilliantly scripted and performed with a tour de force from Suchet, Barr’s direction and the immaculate and very filmic camera work really set the whole thing apart from the usual hour-and-a-half one-offs that we get over here, and puts it in a whole different league to the dull, lifeless weekly dramas we get over here.

I don’t know if it’s to do with the time constraints imposed by low budgets, or a dirth of creativity within the industry at the moment, but every drama programme seems to follow the same visual formula and the same stodgy editing techniques which seem to be turning a very visual medium into a close-up-ridden copy-cat of a good night at the theatre, but sadly lacking the good scripts and – all too often – the performances.

I yearn for a bit of directorial freedom, to see talented people take the scripts that are there (which must be dramatically improved, if you’ll excuse the pun) and turn them into their own films, not the cookie-cutter rehash of last week’s episode.

I understand that within a series there has to be continuity, and that there’s an accepted way of going about doing things, but when anything artistic reaches a status quo it rapidly loses merit.

It doesn’t seem any wonder to me that Channel 4 and ITV and Five are tripping over each other to buy up American drama for over here – and apparently making big mistakes while doing it, according to the press this week – because they simple can’t rely on this country turning out enough drama of quality to fill their schedules.

If we could only produce drama good enough to entice and intrigue and audience, perhaps we would see broadcasters relying on hideous grotesques in “reality TV” to fill their schedules and boost their ratings.

It’s about time we had something to shout about, and Maxwell is certainly a stonking start.

You know me – I’m really not a mean and nasty person, and they say you should be careful who you tread on when you’re going up lest you pass them again on your way down.

Since I very much hope I’m still on the way up, and since I very much hope that I’ve got lots more publicity left in me, I’ve ducked my head back below the parapet and removed all references to the exact publication I was referring to yesterday.

I know, I know, I’m weak and feeble and shouldn’t give a flying one about what people think of me, but the way I look at it is this: in the coming months I’m going to be looking to do a lot more awareness raising of Transplant and Organ Donation and I want as many people on-side as possible.  Surely a petty (albeit nicely amusing) rant about the quality of a paper’s stories shouldn’t get in the way of that.

At least now they’re not likely to find it on a random google search of the name and I shouldn’t find myself blacklisted next time the wonderful Paula sends out an immaculate press release she’s authored on my behalf.

I shudder to think of the low esteem some fellows writers and bloggers would feel about me reading this, but I suppose that’s just who I am – I need to be liked by everyone because I’m a very insecure and shallow person.  So there.

On the up side, I’ve had  some great ideas for promotion and publicity as well as a few short films and other projects I might just have on the burners right now.  Who knows what’ll become of them – and I’m not going to detail them here just yet, because we all know what happened last time I did that – but we’ll wait it out and see.

The sun took a long time to come out today.  I’m hoping it does better tomorrow.

Some days are easier than others, that’s pretty clear after all the months I’ve been scribbling these bits and pieces for myself and whoever happens to be passing to peruse. But while a day may not have been as good as the day before it, at least you can rely on the laughably awful local newspaper to make you giggle through anything.

It is, quite possibly, the worst newspaper in the history of publishing – it would be laughed out of Fleets Street and probably still raise quite a few disparaging chuckles from Sesame Street. It’s pathethic, lazy journalism with hardly a hint of any sub-editing. But boy, does it make me laugh.

Take today’s issue, which landed on my doormat this morning. The lead story was about a pensioner who’s been BANNED from his golf club for using his own buggy. Or at least that’s what the headline leads you to believe. Actually, he’s bought himself a golf buggy to save money on hiring one from the club and they’ve told him he can’t use it because they’re not insured for it.

Laughable health and safety procedures, yes, but hardly the totally-out-of-order disability-discrimination they’re trying to make it out to be. Sure, I feel sorry for the old fella: it’s not cheap to hire buggies. But honestly, it’s hardly the meanest, nastiest thing in the world, is it? It’s a bunch of silly rules which have upset a pensioner.

It gets better, though. How about the article (or is it just an advert) about the new flats going up in Bletchley. With over half still on the market, you too can share the AMAZING views of Milton Keynes from your living room window. It’s even illustrated with a picture of the amazing view: IKEA. Well, IKEA, ASDA, the new footie stadium, downtown Bletchley and some trees. Not exactly the inspiring penthouse vista that you might have anticipated.

I’m consistently amazed and amused at the hilariously low quality of the rag (it really is a rag), and it’s collection of “human interest” stories which get published every week. I suppose I shouldn’t be railing against it quite so much as I have, on occasion, been known to use it myself as a voice of publicity for the various campaigns I get involved in. But even then they managed to spell my name differently in the main article than from the headline. Awesome.

I honestly don’t know if it’s just that MK doesn’t have enough in the way of “news” to make it interesting, or if there’s a genuine total lack of decent editorial leadership, sub-editing or reporting skills, but whatever it is, the paper is worth more as a source of entertainment than as a source of information on the city.

Oh the joys of having very little to do: you do get to see some wonderful things.