Archives: Day-to-day

It’s been a bit of a gap again since I last posted – I seem to have lost my blogging momentum, although I have a feeling it’s because the evenings are much harder for me now than they were. I used to write my blog posts right before I went to bed at 10 or 11 at night, but now I’m usually struggling quite a bit with breathlessness by then and sitting at the computer is about the last thing I want to do with my bed calling me.

Still, I’m sure I’ll work myself back into a groove somewhere.

I had intended to sit here this morning and launch off into another rant about Allied Respiratory (yup, still rubbish) but I’m not sure I can summon the energy or the bile to do it proper justice. I’m doing so well at the moment in terms of energy levels, happiness and all-round doing-things-ness that it seems silly to waste any of it venting my fury at Allied. And it’s such a glorious sunny day outside that I don’t want to spoil it with grumpiness.

I will say, however, that yesterday I was not quite for circumspect or forgiving when they failed to turn up with my oxygen delivery for the 2nd working day in a row. Having expected it on Friday, only to have it moved to Monday (that’s a weekend with no spare O2) and then pushed back another 24-hours yesterday, I was seething. Particularly as no one from Allied deigned to call me to tell me.

The way they treat their patients/customers/fools is completely reprehensible. When I phoned to ask about my delivery at 3pm and asked if anyone had been likely to call me to tell me not to wait in for it, I got a nice, curt, “No, I don’t expect so, not at this time in the afternoon.” Cheers guys.

Do they honestly think that just because I’m transplant-listed and dependent on 24-hour oxygen I don’t have anything better to do with my time than wait around for cylinders of oxygen to let me leave my house? It’s pathetic.

Anyway, I took it upon myself to draft them a letter expressing my regretful displeasure at the standards of the service they were offering and I eagerly await their response. Not that I’m expecting them to do anything.

But I’m not going to let that dominate things today (well, not unless they fail to deliver this morning and mean that I have to scrabble to find K an alternative lift to her appointment in Northampton which I’d not have enough oxygen to run her to). Instead, I’m going to enjoy looking out at the sunshine and contemplating the next move in my rather unhurried life.

The last week or so has been quite nice, as I’ve had nothing really to do or to focus on, having not come to any conclusion as to what I’m tackling next. I’ve just knuckled down to finishing off the next CF Talk, but most of the copy for that should be done by the end of the week.

I know, though, that if I don’t pick myself a project soon, I’m going to drift off into a little no-man’s-land of indecision and boredom and get into a vicious circle of boredom/tiredness/negativity.

The best thing about the last couple of weeks has been finally working out the ins and outs of my body as it is at the moment and finding the balance between activity and rest – knowing what I can and can’t manage and how to deal with whatever exertion I do undertake without running myself into the ground. It’s been a much longer and trickier learning process that last time I was doing it back in December, but I finally feel like I’ve grasped it now. Famous last words, I know, so keep your fingers crossed.

Now I’m off to sit and watch the clock tick round till Allied turns up with today’s delivery.

Two days of lying in bed and doing NOTHING at all actually did the trick and I am now able to sit in my study and actually comtemplate work.

I say “comtemplate” because we all know (or at the very least we should all know by now) that I’m the world’s number one procrastinator and can find a way to weedle out my time sat in front of my computer better than anyone else in the whole wide, entire world.

As it happens, I have achieved a lot of “work” today by checking and sending emails.  These consist largely of sending ideas out to people for possible projects/ideas for collaborations which I’m hoping to get off the ground.

The Youth Theatre experience has taught me that being house-bound and energy-limited needn’t necessarily mean not doing anything at all, but rather that I need to find the right project and the right people to work with to make the most of what I have to offer.

So I need to find myself things to do whereby I can inspire and facilitate things for other people to pull off: kind of like a producer on a film – which is, interestingly, one of the projects I’m considering.

Like all good executives, what I need is to set up a situation where I can delegate work to the people who can handle it and can fill in for me when I’m not up to the task.  At the same time, it should leave something on my plate to make me feel a) involved and b) useful.  Being a base-touching point-of-contact is perrhaps the ideal situation.

That may all be rubbish, of course, and in fact just be providing a very useful excuse to give me a reason to avoid sitting at my desk and getting any worthwhile writing done, but then I’d hardly be doing myself justice if I wasn’t working hard to avoid working hard.

In fact, trying my best to avoid doing any work appears to be the perfect proof that I need that I must be well on the mend.  If I’m not moaning about not being able to work, then I must be doing my best to avoid doing it when I am able.

Most people would think that ironic, I know.  Lucy I’m not most people.

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’.

Traditionally, for my family at least, Easter has been a family-focused time – a chance for the four of us (plus significant others) to get back together for a weekend and catch up. Since I’ve moved out of home, it’s always been a weekend I’ve returned to Mum and Dad’s for the large majority of to sit and talk and eat and drink.

This year was, by necessity, pretty different, able as I am to manage no more than a few hours of doing anything other than sitting quietly on a sofa or in bed. It’s been pretty tough to have to force myself to ignore my instincts and natural predisposition to surround myself with family and instead make sure that I conserve the little eenergy I have into doing the most important parts of the weekend.

Those were, by turns, a family photoshoot (it having been nearly a decade since the last one and Mum was obviously getting itchy for some new smileys on her wall), a family dinner on Saturday evening to celebrate Easter an my bro’s passing his Commando course, then Easter Sunday spreading our time between our two family’s respectively, spending an hour or so with each trying to avoid exhausting myself.

I can’t say it’s been my best Easter – being limited to only doing what you can manage without making your chest scream at you is hardly a resounding indicator of a brilliant time for all, but I think we’ve managed to make the best of a bad lot and enjoy what we could of the weekend. And after all, time spent with loved ones should always be about quality not quantity – right?

Today has been a different story all together. I was pretty tired last night – a step up from exhausted but still struggling – and hit the sack pretty early, only to be woken after a couple of hours feeling tight and breathless and having to haul myself out of bed to do some physio and nebs.

What annoyed me more than anything, though, was that the whole thing woke me up and kept me up until gone half past three in the morning. By the time I finally fell asleep at 4am, I had just 2 hours till my alarm to get up and do my drugs, after which I managed little more than a fitful 30-40 minutes here and there until I finally gave up and got up just before 12.

As a result, I’ve spent the whole day completely wiped out and unable to consider doing anything at all, really. Mostly, I’ve been lying in bed and trying to relax and not focus on how completely shattered I am. I’ve not really succeeded, though.

My mind is pretty blank right now, if I’m honest – I’m struggling to find any words to string together today, mostly because I think all my cogniscent thoughts have migrated to sunnier climbs where sleep comes in glorious 8-hour stretches without interruption and leaves you feeling fresh, bright and alert.

Right now, I’m none of those things.

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.

I’m sure this is a sign that I’m improving and getting better and more active, but I’ve been frustrated again today by my body’s inability to handle more than a couple of hours of activity.

I seem to recall, as I sit here moaning, having exactly the same problem last November when this blog first started, and was forever moaning that I didn’t have enough energy to tide me over through more than a few rumbles of busy-ness.

So I already know that the answer is simply down to discipline and time, and that my recovery will be greatly aided the more I have of the former and the more I allow of the latter.

But being me, I don’t like it.

Yesterday, K and I nipped round to Mazda to collect our new toy – the brand, spanking new Mazda 6 2.0 5-door auto gearbox delight which is sitting out in the court now.  Immediately wanting to take it for a spin, we succeeded in getting to my parent’s house (where K had to print some college work) and back home as we were both shattered.

Having set aside this afternoon for a fun-run (in the car, not of the charitable, ambulatory kind) to bed it in and find out what she can do, we were both excited when we set out.  Expecting to do my usual round of the country roads, flitting through all the different road types to give us a really good sense of what she can do, we set off about 3 o’clock for an adventure.

Come 4.45 we were sat in my parents’ kitchen nearly falling asleep after just an hour and a half of driving, covering a fairly meagre 50-odd miles.  Surely I can have more fun than that?

But no, I remind myself, I can’t.  I have to accept that I can’t and find something rewarding and relaxing to do with my time at home on the sofa.

So, now K and I have the study sorted and the bookshelves up, with our wonderful new library formed from the merging of my collection and hers, I’ve decided I will simply have to get cracking on going through the host of titles K’s already been through and catching up on some literary culture.

I’m not sure quite how well that’s likely to go, but it’s got to be worth a try.  If I can’t improve my body, at least I can exercise my mind.

For those of you who wish to keep track, I’m just finishing off Stephen King’s Carrie and I’ll let you know what’s next.

…a discharge makes.

It took a while, but I finally managed to get myself kicked off the ward yesterday afternoon.  Probably more significantly, it was at the prompting of the docs and not through me harrying them as much as possible to get them to let me go.  In fact, in contrast to my usual practice of starting my “let me out now” lobbying campaign from the moment I arrive on the ward,  I actually didn’t mention it all to the docs until they raised it with me.

The thing about hospitals is that they provoke mood swings more severe and frequent than turns of a steering wheel in a rally car.  It’s possible to go from happy-go-lucky, ain’t-the-world-gorgeous, by-jove-what-a-wonderful-place to  weight-of-the-world, deepest, darkest blackness in a matter of seconds, and it can take a similar amount of time to recover back to normality.

None of which helps much when you’re trying to make sense of the random and rapid variety of things going on in your head throughout the course of the day.

If I said that’s the main reason I’m happy to be out and to be comfortably ensconced back at home in my study in my PJ’s and dressing gown, I have to admit I’d be lying.  Above all, it’s just nice to be back in control of my own day – not having to rely on the timings of physios, doctors, nurses and ward staff to decide when I can and can’t sleep, how long I’m allowed to rest for and the quality of my rest periods.

Back home, everything is part of my own control.  Except, ironically, my chest. But I suppose you can’t have it all.

I still don’t feel 100% – in fact I’m still wavering around 70% at the moment, but it’s a whole lot easier to be positive about outcomes when you’re not staring at the same 4 walls for 18 hours a day, or being woken up to eat a plate of mush which used to be vegetables.

It’s alarming when you spend as much time looking on the bright side as I do to find yourself in a situation where you can’t see a chink of light, let alone a whole side of brightness.  I’m sure that the very fact of feeling down about the world enhances itself because I get annoyed with myself for letting it get on top of me – a self-perpetuating circle, I suppose.

Now I’m home I just have to concentrate on doing what’s best for me and not over-working myself in my bid to get back to normality.  The last time I came outof a lengthy stay in hospital, I went back to Mum and Dad’s to recouperate, but this time I’m trying to skip that step and stay at the flat with K.

The next few days will tell us whether that’s a good or bad decision – largely depending on whether or not I can discipline myself to remain inactive as long as I need to be.  The danger of being at home as opposed to Mum and Dad’s is that there is far too much temptation to “just do” this and that, and all the this’s and that’s soon add up to being way too much and I find myself over-exerted again.

The main thing is that being back home I feel much more myself – more easy about things and less penned in to someone else’s routine.  Now I’m back I feel like my mind’s my own again and while it’s naturally going to take me a while to wash away all the negative thoughts, they’re certainly going to seep away much quicker in this environment that they were ever likely to on a ward.

I want to say a huge thank you to all of you who’ve left me messages and sent me emails – it makes such a difference to know that there are people out there rooting for me and willing me on.  It’s hard to explain the feeling of knowing that someone’s getting something valuable from a blog like this – it’s part of the reason I set it up but also one of the things I least expected to actually happen with it.

If nothing else, I hope the last few weeks (and hopefully the next few) will help to show that no matter what lows you sink to in health – be it mental or physical – there’s always a way back.  I’m under no illusions that sooner or later the physical is going to become insurmountable, but with a positive mental attitude (oooh, the PMA cliche!) and the support of my family and friends, I aim to make sure that I make it “later” – and preferably long enough to get a fresh set of blowers.

Take care, all of you, and look after yourselves.  Every single one of you is important to someone, and chances are you’re more important to some people than you will ever know.  Never forget that you’re amazing.

Alright, love-in over.

Ups and downs are par for the course in life, and we all learn to live with our own particular roller-coasters and merry-go-rounds.

Right now, I’m in a pretty substantial dip, enclosed as I am in my hospital room with what appears to be very little day-to-day improvement or sign of change.

I’ve been in just under a week now and, while I do feel better than I did when I was admitted, I don’t feel like I’m somewhere the docs might describe as “better”.

What’s become worse over the last few days is my intense focus on my transplant and when it’s going to come.

For the last 20-odd months, I’ve lived with the ever-present likelihood of that crucial phone call at any time of the day or night, but it’s always been something which I’ve lived with in the background and not paid much heed to.

Now things are looking less rosey, and with landmark moments being missed and life being put on hold, the urgency has been brought to the fore and the once-in-a-while thoughts have turned to a daily dwelling.

What upsets me most about things at the moment, though, is how much this borderline obsession is changing me as a person.

Not only do I feel more negative than I have for a while – finding myself struggling to see the fun side of life or consider anything that might be conceived as residing in the “future” – but I’ve also developed what can only be described as a jealousy towards others.

One of my closest “net-friends”, with whom i’ve shared many of the bizarre, amusing, surreal and downright scary moments of the transplant process, has been granted the gift of life which had so long eluded her.

But rather than finding myself eagerly awaiting news of the new joys she’s discovering every day, I can’t bring myself to catch up on things because I am constantly hit by a wave of “what about me” feelings.

I don’t recognise this as a trait in myself – it’s just not me. I’m not a jealous person and i’ve always delighted in the triumphs of my friends, family and all those around me.

So why the change now? What is it about my life at the moment that has brought out parts of myself that I never knew I had?

They say you learn a lot about yourself in adversity and “they” are often right. But how much of my current mood and outlooked is a deep-rooted personality defect that’s been dormant for years and how much is it merely distorted through the prism of life-threatening illness and the hope of salvation?

I honestly don’t believe I’ve changed as a person, nor do I think that my current health-hurdles are insurmountable. Similarly, I don’t expect my run of negative thinking to go on forever, but see it merely as a darker period brought on by hospitalisation – an effect I’m all too aware of from past admissions (both recent and historic).

The trouble with lung damage and infection is that it’s incredibly hard to know when you can reasonably expect to regain your lost lung function after a bout of infection and when you have to accept that you’ve waved goodbye to the portion of lung for good.

Clearly, the lower the function in the first place, the less there is room for movement either way. So when lung function drops, it’s hard to keep the fatalistic wolf from the door – both physically and mentally.

I’m not giving up yet, though. I’ve been through tough times before and although I’ve never considered myself quite as close to kicking it as I have this time, I’m confident that I can get past it.

This is largely thanks to my ever honest and sensitive team at Oxford who know what goes through my head and aren’t afraid to tackle the issues – and fears – as they come up.

I may not be able to bring myself to stay fully abreast of a good friend’s post-transplant progress, but I can still remind myself how often things looked bleak before the big day arrived.

Everything comes to he who waits, and while my new lungs may be the longest-settling pint of Guiness in history, I’m sure I’ll soon be frustrating someone in my position with my tales of new wonder in my life.