Archives: Difficulties

It’s been a pretty rough time of late and, if I’m honest, I’ve been struggling quite a lot. I’ve not really felt like blogging for quite a while as I’ve been battling with my own daemons and not really wanting to share them with anyone else.

Over the last couple of weeks it’s been slowly emerging why I’m feeling like I am and I’ve come to a few realisations that will hopefully put me on the right path for the next little while. Essentially, I realised, I don’t know how to be well.

I’ve spent so many years ducking and diving in and out of hospital, but since May 2008 I’ve not been admitted, not really been unwell, not had a cough, a cold or so much as a bad case of the hiccups. It’s been all plain sailing and that’s not something I’ve really experienced before – my life has always been broken up into chunks of illness and relative wellness.

What this means is that real life is starting to intrude with a vengeance. I’m actually having to start thinking about “the future”, something that’s always been an alien concept to me as I’ve never really believed I’ve had one. I’ve never planned more than a few months in advance because everything’s always been so unpredictable that I couldn’t. Even last year I had to miss the holiday we’d planned because I was hospitalised with CMV. So it’s strange to be forced to sit down and work out just what the future holds for me, for K and for everyone around us.

I’ve been struggling a lot with making the most of my new life, too – I want to do everything I can to honour my donor but right now I don’t feel that I am. I want to challenge myself both physically and mentally and push myself to find where my new boundaries are, so I’m looking at ways of doing that to make a dedicated, concerted effort to make the most of these lungs and to help my donor to smile down on me and feel proud of the life they’ve given me.

It’s been a tough haul over the last month or so and I’ve had to make some really tough decisions and I know I’ve got some really tough ones to come, but I’m starting – slowly – to feel more confident and energised about what’s on it’s way. I will try from now on to keep this blog more up-to-date with what’s happening and, in particular, my thoughts and feelings about things as I know from before my transplant it can actually be pretty therapeutic.

I can’t promise it’s all going to be sunshine and lollypops on here, or that it’ll even end up being that interesting, but I can promise myself that continuing to write “smile through it” may help to remind me of the long-lost days when everything was a chore and I had more to worry about than not having plans for next February.

Here’s to life: living it, loving it and smiling through it.

I guess there’s ambition and there’s stupidity and I’m guilty of the latter.

I was so passionate about getting this flick made that I hadn’t stopped to look at the practicalities properly, thought it all through or taken the time to develop a team who could help out with the production side.

Naiveté can be a wonderful thing in some walks of life, but not in filmmaking. I underestimated the task in hand and the likely support for it and I overestimated my own ability to deliver.

Do I feel foolish? Yes. Will I plough on and keep chasing my dreams? Of course.

This blog – back to it’s original incarnation – may well cease to exist now, or become much less frequented. When I started writing here, the idea was to talk about my journey to transplant. I’ve been there now, I’ve passed that life-saving, world-changing milestone and I don’t now want this blog to turn into yet another “today I had a ham sandwich” diatribe about the world’s dullest daily life.

So feel free to check back every now and again and see what’s happening – or even better add me to an aggregator like Google Reader and then you’ll see whenever I throw something up.

Take care of yourselves and never give up on what you know is right for you.

There was I hotly anticipating my return to work this week and getting really rolling on Remembrance when I was flattened again. This time not by small children, but by some kind of a stomach bug. It’s left me totally wiped out and exhausted for the last 3 days and I’m only just getting back up to speed. Sucks quite a bit.

I have to confess I’ve been a little worried about things. If you’ll remember, last year’s CMV infection started out with weird pains in my chest and stomach, so a recurrence of similar and apparently inexplicable symptoms has rattled my nerve a little bit. I’m sure it’ll be fine, but I think after so long of being well my mind is maybe a little pre-programmed into expecting something bad to be due me. A stupid thought process, to be sure, but one that’s hard to avoid after spending 25 of my 27 years as a seriously ill person.

Anyway, the upshot of all this is that I’ve achieved nothing at all this week, which is obviously sub-optimal. Added to which, since I’ve been doing nothing but lay in bed all day, I’ve got into a horrible sleeping pattern and am up until past 3 in the mornings at the moment – never a great thing for aiding recovery.

I’m due in to my GP surgery tomorrow morning for some blood tests and I have a scheduled appointment at Harefield on Monday so hopefully this will all either have cleared up by then or we’ll be able to tell exactly what it is.

In the meantime, the one thing I have managed to do is to draw up a shortlist of DP candidates, who I’ll be meeting next week to have a chat with and go from there. It’s exciting stuff, I just wish I had more energy for it right now.

Since my transplant life has taken on a whole new slant. For the most part this is absolutely, 100% undeniably awesome – being able to do the things I want to do, not having to worry about all the rubbish that went with the battle against CF. But every now and again something hits you with a bump, or a thud, or a massive hammer-blow to the head.

I got a phone call from a friend’s husband this morning saying he’d just been off the phone with the mother of a friend of mine from years back. She had CF and we used to chat a lot about all sorts of things – frequently how rubbish CF was – and make each other laugh and work through things when we needed some support. Sadly, she passed away this morning.

There’s such a complex mix of emotions post-transplant. On the one hand, I’m so deeply saddened that another young life has been lost to a disease which needn’t take people away from us. On the other hand, I’m so deeply grateful to my donor and their family for giving me the chance to retake control of my life and battle on to achieve what I want to achieve. It’s both deeply upsetting and hugely motivating when you hear of someone losing their fight.

Just last week I was in Oxford for my annual review with the CF team. It’s really a bit of a formality, as the CF no longer affects my lungs, but it’s still important for them to keep an eye on the other parts of my body CF can affect. It was such a great day though, epitomised by one little moment.

As the physio was doing my general assessment, including posture and other things, she had to listen to my chest. I’ve known my physio for a long time – over 10 years I’ve been going to the same clinic with the same physio now – and as time passes and you go through phases of ill-health, better health, dreadful health and have the kind of scares I went through, physios are the people you naturally seem to turn to. Most PWCF will tell you that their physio is the person they confide in the most, more often than not because they are the member of your medical team you spend the most time with due to the frequent rounds of physiotherapy needed to keep the chest at some vague approximation of a functioning level.

So my physio is doing her assessment and I lift my shirt for her to listen to my chest. I used to know I was ill when the physio or doc would listen to my chest and pause the stethoscope in any one place for longer than a single breath. As she listened to my chest, she paused in one particular area and a dread went up me, until I glanced down and saw a smile creeping over her face as she listened to my now-soundless chest.

For years all anyone had been able to hear on my chest was the crackly static of blocked and infected lungs, now there’s nothing. And as she listened, my physio couldn’t hide her big, beaming smile at the fact that there’s nothing for her to do on my chest any more.

I’m enjoying a life I never thought I would or could, thanks to the generosity of one family, but the price I have to pay for the extension I’ve been given is seeing people who could so easily be like me losing their fight.

This is why I work with these guys and this is why I’m making Remembrance – if they’re not here to reach their dreams, I damn sure better make an effort to fulfill mine. If you want to buy in to my dream, go here to find out more.

This is my second post-transplant birthday and I’m delighted to say that the novelty really hasn’t worn off. This time last year I was celebrating a birthday I never expected to see just weeks after mourning the loss of a friend whose transplant didn’t come in time.

This year is no less emotional, having been part of the Team Ethan fundraiser last weekend and remembering that I’m only here thanks to the generosity of my donor and their family. But it’s also been brilliant to be surrounded by my friends and family and really enjoy a day of doing nothing but what I wanted to.

I’ve been so overwhelmed by all the messages of support on Facebook and texts and phone calls from people. I really didn’t expect so many people to get in touch – it’s all a bit of a shock, if I’m honest, although K thinks I’m silly for being surprised. I suppose I simply had no idea that so many people were watching out for me and keeping tabs to make sure I’m doing OK.

It’s also really given me the kick up the proverbial to get myself into gear. Last week was a really hard week and I lost my focus a little, hence the delay in announcement of the Big Secret Project. But having had a weekend to look at the bigger picture, I’ve realised that this is 100% what I need to do with myself right now. And if I can’t do it with the MASSIVE team of supporters I’ve clearly got behind me right now then, quite frankly, I’m never going to be able to do it.

So from tomorrow it’s onwards and upwards – the project is a GO and will be announced right here and on the TinyButMighty website within the next 48 hours. So come back soon!

This is the first week in a while that I’ve not had things scheduled in my diary for every day of the week. It was a nice change to look in the diary and see some blank spaces.

Somehow, though, it doesn’t feel like I’ve got much of a break – I’ve been so busy that I’ve left a lot of things neglected and so I’ve been on an enforced desk-bound catch-up mission all week.

That said, I did manage to get to the cinema last night to catch Gran Torino, Clint Eastwood’s new film, which I completely loved. I don’t know quite what it is about Eastwood that hits me, but all of his recent stuff since Million Dollar Baby has really grabbed me and totally absorbed me. He’s a truly masterful filmmaker and Gran Torino is his best for a while. Changeling was good, but felt a little bloated and over-long to my tastes. GT on the other hand is perfectly weighted, plays out along an arc that’s at once predictable and surprising – not an easy thing to manage in today’s world of more and more savvy film-goers.

Speaking of filmmaking, things may be starting to look interesting from a freelance standpoint. I’ve got a meeting today to discuss a project in Northampton which stems from a networking session last week, plus I’m in talks to shoot a “making-of” doc for a low-budget British movie that’s gearing up for pre-production at the moment, which is very exciting.

I’ve also just started work on a new screenplay which is, I think, my most commercial spec script that I’ve written so far. I’ve set myself a deadline of 1 April to have a finished first draft, after which I’m going to do a polish on an old script and the new one and start to shop them around companies and agents to see if there’s any interest.

And in between all of that, I’ve got my last 2 talks of my marathon session of 4 in 3 weeks coming up this Saturday and next. I promise I’ll try to blog about them to let you know how they go, since the previous talks I seem to have managed to gloss over entirely on here. If I get half a minute I’ll try to pop back on and at least update the entries for last week’s talks so you know to whom and about what I was speaking.

Although I’ve been doing lots of, frankly, really cool stuff, I’ve actually not enjoyed being as busy as I have been. It’s been non-stop for almost a month and I haven’t had chance to do the things I want to do – I’ve always felt like I’m constantly moving from one thing to the next without pausing for breath, which is something I don’t really want to turn into a habit as this new life should be all about enjoying it all.

So here’s hoping I can be more disciplined about saying “yes” and “no” to things and focus more on what I see as the things I most want to pursue. Sooner or later I’m going to have to make a decision on what I most want to do with myself, and the sooner I do that, the better for everyone, I think.

Not like that.

After a fun night of snowballing on Monday, Tuesday started slowing me down a little with a scary kind of feeling that I had something brewing. As it turns out, I did, but it was only a cold.

It feels quite good to sit here at a keyboard and type “only” a cold – as one of my friends put it in a text on Thursday, a simple cold used to be a serious issue to me. It would have me worried, K worried, my parents worried. And we’d ride it out and get in touch with my team at Oxford and sort out some antibiotics to treat the inevitable chest-infection that would have followed.

Now, having a cold means I feel a bit rubbish for a couple of days. I love colds like that.

Still, it does have its drawbacks. Since developing my cold on Tuesday night, I appear to have returned to a previous life as a hardcore insomniac. Since Tuesday night into Wednesday, I’ve been sleeping appallingly. Indeed, I sit in the lounge writing this now at nearly 4am and I’m still not feeling anywhere near tired enough for sleep. But during the day I’m becoming Zombie-fied.

This week has been a fortuitous week to be stuck with insomnia, however, since the snow has meant any work I did have lined up has been cancelled and, as of Thursday, we’ve been properly snowed in. I say “properly” but that’s not 100% accurate. What I mean is that we can’t drive anywhere, which, in Milton Keynes, the city modelled on American-style grid-road systems, is a bit of an obstacle.

Yesterday I did manage a wander down to the shops at the bottom of the road, which is somewhere in the region of a mile’s walk, and discovered that traipsing through snow is incredibly hard work. Coupled with the cold, it left me exhausted. I was certain that it was going to help me sleep better in the evening, but no dice. Another hour of lying in bed tossing and turning lead to me getting up and staying up until I finally all-but-passed-out in the late-early morning hours.

So now I’m sat back in the lounge watching 4am tick ever closer, ploughing through more of the extras on the new Lord of the Rings Extended Edition Box Set I picked up from the now-defunct Zavvi in CMK and charging myself up with the drive and passion to go out and make at least one of the short film scripts I have lying on my desk just waiting to be tackled.

I just need to find a cast…

I apologise for the lack of updates after my not-too-rubbish start to the year with regular updates etc. I have, however, been somewhat preoccupied over the last couple of weeks with various mentally-busy work-related things, including producing a DVD of a project I worked on last year and completing a First aid course for work at the Grove.

Most excitingly of all, though, is the fact that I’ve been settling in to my new role as Chairman of Live Life Then Give Life, something of which I’m very proud. Our former Chairman, Emma, has felt it necessary to stand down, although she will, thankfully, be staying on as a much-valued trustee. At a meeting two weeks ago, the rest of the board of trustees saw fit to elect me into post as Chairman and I’ve been pretty much rushed off my feet ever since.

I clearly chose precisely the wrong two weeks to step up into the new role, having spent my first week in post working 10-4 on First Aid every day and my second week locked in my home editing suite to cut, design and finalise the DVD for the schools project I worked on with Suze last term. There’s a showing of the vid at the school on Tuesday morning, so it’s the usual deadline-getting-your-butt-into-gear deal as I rush to make sure it all looks tip-top.

Despite the fact that it’s taken me a lot longer than I expected, I’m really proud of the result – it’s going to be a great representation of the project and a great show real for both my work and for Suze’s Catalyst Theatre Arts, the company she runs with her sister, who throw a lot of work my way so it’s nice to be able to give them some marketing material out of it, too.

So it’s not been the best of weeks to try to get to grips with all the extra bits and bobs that go with being a Chairman as opposed to a trustee, but I’ve already seen a whole new side to the charity and what we do. I’m also delighted to see the way our two new trustees have slotted in to the team. The problem with having a team that’s as close-knit as the Live Life Then Give Life team are is that when you introduce new people to the equation it can be difficult for them to find their place and not feel out-of-the-loop or left out. But the current board of trustees have really taken to the new guys and have been working brilliantly with them from Day One, which is such a great feeling not just for me but for eveyone.

Hopefully now things are on a slightly more even keel, I’ll be keeping the updates coming through on a more regular basis. Unless work gets manic again, I guess…

I tried my hardest to get up early today, but instead succeeded only in rolling out of bed at 8, which gave me enough time to sort myself out and have breakfast before heading over to the Grove for a bit of new term training ahead of the re-jigged Youth Theatre turn.

I have to say I was somewhat surprised to find that there was a new Youth Theatre leader their, who will be taking the Tuesday night sessions that I’m also working from now on, in addition to my Sunday sessions from last term. I was disappointed to find out at a meeting of the leaders, although I suppose Christmas is a hard time to contact people about things.

We nevertheless had a really productive day, going over all the do’s and don’ts and whys and wherefores of leading Youth Theatre sessions, as well as a little role-play (natch) and then some hard-core term-planning in the afternoon.

We didn’t get as much done in the afternoon as I think The Boss wanted us to, but it was important for us to take the time to feel each other out and put ideas forward. It was hard, though, because having never worked with two of the people there, you don’t really know where your boundaries are in discussing ideas and having disagreements, so it was a little “eggshells” for most of the session, although we did manage to hammer out a general direction for it all.

While I’m at the Theatre, K’s having a terrible day back home, due to some careless editing in the local rag which leaves her incredibly upset. I head home as soon as I can to pick her up from her ‘rents, where she’s escaped to in order to hide from the world (her avoidance method of choice).

I pick her up and we head home, where I rustle up some grub and we eat before veg’ing out on the sofa in front of some Sky+ TV before heading to bed around 10ish.

Still awake at 6.30am, I decide it’s not worth sleeping, at least until I’ve taken my Tac, which I’ll need to grab in a couple of hours as it’ll just make me feel worse, so I pootle around the house doing not very much and watching Rocky Balboa still.

K wakes up about 10.30 and joins me in the living room, where I’m busy working on a short film script I’m hoping to put into preproduction next week for a mid-Feb shoot. K showers and has breakfast while I work on her computer (I couldn’t be bothered to move through to the study to work on mine, plus I’m enjoying having the TV on in the background while I work), then I trade the computer for the bathroom and relax in a deep, hot bath to try to revive myself.

We head out about 12 and pop to the shops to grab some flowers for our hosts for lunch and pick up a Christmas pressie package from the Post Office depot in Bletchley, before heading over to Li’l R’s for lunch with him and the fam.

We have a gorgeous lunch of slow-cooked beef which just comes apart at the touch of a fork and truly melts in the mouth, before enjoying a 2-course desert. After lunch we watch the most random comedy sketch in the world which has us all in hoots of laughter. The family have just been to Sweden and apparently this ancient 50’s or 60’s comedy sketch is traditional viewing over Christmas for almost all of Scandinavia. I’m amazed we have never seen it here and am determined to track it down.

I say “track it down” but it only takes a perfunctory YouTube search to come up with this – absolute genius. While we’re on YouTube, we are also shown a few other gems of random content, including this masterful Harry Potter homage/fantasy/mickey-take.

We get up from the sofas and head back to the dining room where we play a game of Humbugs, the most embarrassing game in the history of the world (even more so than Charades) and then Boggle while we wait eagerly for the anouncement of the new Doctor to replace David Tennant.

We sit and spend the majority of the programme trying to second-guess it, ut we’ll all entirely wrong. Matt Smith is a shock at first, looking slightly “individual” as he does, but listening to the interview and remembering his performance in Party Animals, a favourite show of mine that I sadly missed a lot of and has never returned, I think he could be an inspired choice.

The most important thing about him, I think, is that he’s going to be happy to risk things and take his own line with it, not try to follow anyone else’s footsteps. It must be incredibly hard to join a series like this after two powerful and individual performances like Tennant’s and Christopher Eccleston’s, but I think Matt Smith my have the right angle on it to make it his own.

That said, I do think he’s going to end up being a Marmite doctor – you’ll either love him or hate him.

We head off after the prog and get home to chill out for the evening, trying to put on Ben Shepard’s new Krypton Factor, but our Sky+ went screwy so we don’t have it. We fall back on the Top Gear Vietnam special, which gives us a good, pre-bed giggle, after which we hit the sack early and cuddle and chat until 10ish, when we both break out a book (how exciting) although I only get a few pages through before my eyes start closing, hardly surprising given I’ve only had an hour’s sleep from the last 36 hours.