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Well, someone was listening to me last night, because today has, indeed, been a better day so far. That’s not to say things are all fine and dandy, or that the picture is yet all rosy, but side-by-side with yesterday, today has been a Good Day.

I managed to get almost straight to sleep last night, sometime after 11pm, which is rare forr me these days. Not only that, but I managed to sleep quite solidly, too – no constant waking to switch position or readjust myself. It may have been thanks to having fiddled with Neve and pushed the pressures up ever-so-slightly, or a slightly improvement on the chest front, or simply thanks to complete exhaustion and my body not having any other choice but sleeping it off. My guess would be it was a healthy mix of the three.

Bizarrely, and somewhat annoyingly, I woke up bright-as-a-button(ish) around 5am and couldn’t get back to sleep, no matter how hard I tried. I had planned to lay in a bit today and do my morning dose a little later than usual, but given that I was awake anyway, I decided to switch the plans and get up early and get them out of the way, which would have the knock-on effect of allowing me an earlier night tonight.

I got up, got my dose running and sat myself a the computer to surf around and catch up on the over-night writers’ strike news, during which time my chest was doing all kinds of weird things, making me breathless one minute and fine the next, and I developed a bit of a killer headache.

By the time my drugs had finished, I decided it’d be a good idea to try to get some physio out of the way before I got myself back to bed, so I did another very uncomfortable session – very hard work again. Having said which, I definitely felt the benefit afterwards, even through it didn’t feel like I’d cleared a lot. I did my anti-biotic nebs and then took myself to bed around 9am.

Interestingly, for those who keep tabs on this sort of thing, 9am is also the time that the construction workers begin work on resurfacing the road outside the front of where we live. With the sun beating a nice, hot set of rays down on the bedroom window, keeping them shut was out of the question, so keeping the noise out was also not a part of the plan.

As it happened, noisy as they were, I needed sleep more, and I managed to doze on-and-off for another few hours till the early afternoon.

I rolled out of bed feeling much better for the physio and sleep, grabbed a cuppa with K and chatted for a bit, talked to my ‘rents to catch them up on over-night progress and then headed back for more physio. It was a much better session than this mornings, and much easier, too, making things look brighter already.

After physio, I got some calories down me and then headed back to bed to chill out with K and watch the first ep of the first season of 24 – a season I’ve seen but K hasn’t and is next on our TV-DVD marathon. I’m amazed at how much I don’t remember from the first time it aired, and also at how much of what I do remember they’ve crammed into the first ep – there must be a whole heap more that I don’t remember to come, which is promising.

After chilling in bed for a while, K gets up to do some more revision and I sit and read GQ for a while, before K heads off to college and I do my 3rd physio session of the day. I’m determined to crack the back of this while I can.

Physio out of the way, I jump online for a while and do a bit of Chrimbo shopping (have to bow to the inevitable eventually, I suppose) and look into a couple of other random bits and pieces while the Shepherd’s Pie Mum made me yesterday cooks.  I sit and eat it while watching the last episode of Extras from the DVD that I’d never got round to seeing, then wash up and get back to the study, going over a couple of old scripts till K gets home.

We watch some programmes from Sky+ and I do some more physio (a really good late-night session, actually), and before I know it my evening drugs are all done and it’s time to hit the sack.  Things are still very up-and-down, and I suspect they will be for a good few days yet, but today’s been a massive improvement on yesterday, and that’s a big step forward.  Well, at least a little one.

Today has been, hands down, one of the hardest days I’ve had in a very long while – harking back really as far as my admission in June, where every day was a challenge.

Luckily, the benefit of hindsight and such tells me that it’s not quite that bad – one horrible day in a week can’t possibly be as bad as one passable day in a week – but it’s only thanks to a little bit of let-up in the relentless onslaught of tiredness, breathlessness and exhaustion that allows me an ounce of philosophy in my outlook.

It started, oddly, not too badly – I woke this morning having had very little sleep but not feeling too bad about it. I clearly had a lot on my chest, but was also managing to get quite a bit off just by being up and about. Early mornings are usually the time when you find out what kind of crap is on your chest, since the very process of getting up and moving around tends to make you cough and splutter, which in turn lets you see a) how productive you are b) how easily it’s moving and c) how out-of-breath it makes you when you do.

I was moving stuff pretty easily, although it was exhausting to cough and my throat was still causing problems with getting the big lumps up. (Nice, I know, but this is a full-disclosure blog, so if you don’t like it it’s not for you, I guess!). Having got my morning dose of drugs out of the way, I crawled back to bed feeling breathless but not too bad.

I woke again around 12.30, later than I’d planned and wanted to. With a 2.30 appointment in Oxford, I’d have to be out of the house in under an hour, so would need to pick and choose the most important elements out of bathing, dressing, eating, doing physio and doing nebs, as well as getting my things together for the Oxford trip (it always involves taking a book things as well as my physio-helping device, which all need to be collected into a bag – it may not sound like much but believe me, it was a task-and-a-half today).

I settled on food and nebs being the two most important things, so threw on some clothes in a very slow and deliberate manner and made a sandwich, which I sat and munched before doing a neb and collecting my things, all of which filled the next 45 minutes and made me incredibly, uncomfortably breathless.

At Oxford things didn’t improve a whole lot. My nurse changed my port needle, which was fine with the exception of the bioclusive (clear plastic) dressing pulling off a good chunk of surface skin by my under-arm area, which was then healthily swabbed with alcohol prior to the insertion of the new needle. Yes, it smarts.

My physio session was really, really hard work – harder than I’ve had for a long time. I was breathless, tired and my airways were irritable and not playing ball, the gunk on my chest refusing to be moved around and brought up, so it felt like we weren’t really achieving much.

Seeing as I’m now sliding into my 4th week on IVs, the team wanted me to check in with the Doc to see if they wanted to do anything different. I’m loathe to change anything at the moment for several reasons, partially because I believe that once I’ve kicked the cold the drugs will do their job, but mostly because any change in IVs is likely to mean switching to one that I don’t get on with quite so well, which in turn would mean that they’d have to have me in and on the ward for a few days so they could keep an eye on me. I’m not keen on the ward at the best of times, but when I’m not getting a whole lot of sleep at home, it’s even less appealing because I know that I won’t get any on the ward.

While I was waiting to be fitted into the doc’s queue, I had another fantastic session of physio with the wonderful back/neck specialist, who worked me over really well. She did what she calls “mobilizing the joints” followed by “mobilizing the soft tissue”. One of the nurses said that the soft-tissue stuff looked like a massage to her, but the physio helpfully pointed out that the big difference was that massages are pleasurable.

Neck attacked, I popped across to the clinic to catch up with the doc, who reluctantly agreed to give the drugs a few days to see if they can kick in after the cold. We agreed that if things are no better by the weekend, then I’ll be straight in. If I’m picking up they’ll leave me out and check my progress after the weekend and we’ll see where we stand.

By this time it was well after 4.30, which meant a slow journey home in the evening traffic. We made an executive decision to take the scenic route which, although dark and not at all scenic, would at least guarantee that we’d be back inside an hour and a half, which is impossible to be sure of if you take the A34.

Back home just after 6 I was completely exhausted, to the level of a childish sense of having no idea what to do with myself. Every single part of me wanted to go to sleep, but I knew if I did I would have no chance at all of getting to sleep. Instead, I sat myself in the study chair to be as comfy as possible and surfed the ‘net for a while, before hopping into a bath to try and freshen up a bit.

It worked – to a limited extent – and we then managed to get through our usual Wednesday night where our bestest bud Dazz pops in to catch up on a Sky+’d ep of Entourage (our guilty pleasure) followed by this week’s Heroes.

With those out of the way, I didn’t have much else to do with myself than dump my exhuasted, knackered, b*ggered old body in the sack and pray for a good night’s sleep. And while I was there, I put in a small request to have a better day tomorrow, please, too.

I am very much asleep when the alarm goes off this morning and I prize myself out of bed in a slow and careful manner. Drugs duely flowing, I try my hardest to stay awake while they run through, watching some Making of Toy Story DVD as I do.

Once the drugs are done I’m about focused enough to run K into work, but when I get home I take myself straight back to bed for another hour’s kip, which is rudely interrupted 45 mins in (just when it’s about perfect snoozing) by the postman, who can’t let himself in again (to the building, that is – he doesn’t try to break into our flat of a morning).

I decide it’s pointless trying to re-claim my 15 minutes and so head for a bath instead, then check my email quickly before Mum arrives to whisk me over to Oxford for my physio appointment.

My CF team in Oxford have recently reached a deal with the physio department whereby they can cross-pollinate departments – whereas I used to only be able to see chest-specialist physios (who are paid for under the CF-care banner) if I wanted to see any other type of physio, it would have to be a paid-for referral either from my GP (who’s in the wrong PCT) or the chest team (who can’t afford the extra fees). Charging issues ironed out, however, I am free to go and see a muscular-skeletal physio who is part of the Churchill team up the corridor from my usual clinic.

What a difference a specialist makes. My two regular physios sat in on the session too, eager to learn the basics of what they could do to help me (and others) out with my neck/back problems, all of which stem from the extra work my respiratory muscles are having to do to make up for the cruddy condition of my lungs. After half and hour’s poking, prodding and manipulation, I can already feel a difference, and the physio promises if I can get up there every week she’ll find 10 minutes to have another go and keep the main parts mobilized, with the eventual aim that I’ll be able to strengthen the muscles back up to pull more weight without so much strain.

After my neck session, I head down to the treatment centre with my regular physio for a regular chest physio session, at which we also do my L-F, which stands back up at a healthy (relatively) 0.8/1.5, which is good to see. Even more astonishingly, my weight has now hit 56kg on the clinic scales, and that’s without a thick jumper on. I’ve NEVER been this heavy before, and it feels like a real achievement.

Back home I feel terrible because K’s had a bad day at work and only been home half an hour but all I can do when I walk in the door is fold myself into bed and fall asleep. Rested an recovered after an hour or so, I try to make it up with Tea (which is usually a good place to start) and she appears not to harbour any of the kind of grudge I think I would given reversed circumstances. It’s times like these that my “frailties” really bug me – it seems such a small thing to ask to be able just to chill and have a cuddle after a bad day, but when I’m tired, especially from travel, I’m really not in a state to do anything. What makes K so wonderful is the fact that no matter what the situation, she never complains at all.

In the evening, an old school friend who’s recently moved back over from France pops round and we have a giggle-some night of pizza and board games. We discover, much to our disppointment, that Operation really isn’t that difficult if you’re any older than about 10. None of us had played it for years, but he’d had it at home and thought it was in marvelously bad taste to bring it round (which we both readily agreed). Naturally, they let me win, since otherwise it would just have been rude.

Another couple of games of Scene It (of which I won neither, let the record show – for those of you who think I must just walk it every time), and B headed off home. My drugs were due later than normal because of bad planning on my part so K headed to bed while I did my last dose, watching some Sky+’d Simpsons and the start of The American President, which I’d recorded a while ago before surfing the ‘net for a while during my evening nebs.

I eventually make it to bed about 1.30am, where I read Kevin Smith just long enough to make my eyelids heavy then settle down for the night.

I have discovered a new feature on my blog which allows me to change the datestamp on the posts, so I can post an entry for Thursday after typing it up on a Saturday (exactly what I’m doing now). This excites me because a) it means I can technically never miss a day’s blogging without feeling like I have to write something hilarious at midnight when I’m straining to keep my eyes awake, b) I can better keep track of all the things I do from day-to-day without having to write a single, enormously long post at the end of the week or such.

Really, the excitement stems from having got lost in re-reading Kevin Smith’s diaries, which I used to follow avidly on his website but have now been published in paperback form. What occurred to me as I waded back in to them (alongside memories of their first reading as long ago as 2005) is that part of the reason for creating this blog was not only to try to give myself a kick up the butt when I needed one, but also to have something on which I could look back in a few years time (God willing) and help me to remember what life was like “way back when” in my old life with rubbish lungs.

So I’m hoping to keep a slightly more day-to-day diary of events from here on out, although I’m sure they will still be peppered with the usual random tangents and streams-of-consciousness as all my posts have ever been.

So anyway, Thursday (today… wait, that’s weird…) saw me waking, annoyingly, 10 minutes before my alarm went off. I say annoyingly, but actually, thinking about it, it’s quite nice to wake up naturally, even if the first impulse on waking to roll over and drift back off to sleep has to be fought off to get up and set the a.m. dose of drugs flowing. Which I manage to do.

I park myself, still slightly dazed, in the chair by the telly and watch something or other while the drugs kick in. By the time they’re done, I’m actually nearly awake, which is quite rare for drug-mornings. I stick on the extras disk from Lost Season 3 (which we finished last night) and immerse myself in behind-the-scenes stuff which always gets my creative-juices flowing.

At 10 I wake K up as we have a visit from our littlest niece and nephew and she just about manages to roll out of bed in time to greet them at the door. They are so excited to get here it’s almost magical, and no sooner are they in the living room than they’re up on the sofa bouncing their heads off or pulling the contents of the coffee table off onto the floor.

We sit and drink tea with their Mum while they tear the place apart (in a nice way) and we play with anything we can find to play with. Most excitingly, because of the delivery of drugs I had yesterday, we have a big, empty cardboard box to play with, which ends up getting decorated with colouring pencils.

I grab my camera and get some super-cute shots of them as they run around, including some wonderful full-paparazzi-style shots of the little on, hand extended at the camera in “get out of my face” mode.

They leave around lunch time and I immediately crash out back in bed. I’m pretty impressed that they didn’t actually totally exhaust me, but I know for sure that if I don’t take the chance to recharge my batteries now, I’m not going to make it through the rest of the day unscathed, and with the hint of a cold still around, I don’t want to use all my energy up.

I wake up a couple of hours later and feel strong enough to run K to college, which cheers me up as I’d assumed I would be house-bound most of this week. I drop her off and head home, spending the next hour or so on the ‘net checking emails and getting a little lost in Facebook, as is my unfortunate tendency.

K calls in a seriously foul mood (justifiably, after a completely wasted and pointless night at a poor excuse for an educational establishment – shame on you Milton Keynes College) and I run out to pick her up.

We get back to find an old friend of mine from the Theatre in the car park, where she’d been waiting for me to get back (I thought K was going to be out longer, so I’d be around to let her in before I had to shoot off to pick her up, but ended up leaving her parked outside for 20 mins while I did the school run). We go upstairs and grab a cuppa while catching up on anything and everything from the last 6-months or so. She has a lot more to share than I do…

In fact, I hadn’t seen her since before she went off on a jungle-trek to Thailand in the summer, through which she raised over £7,000 for the CF Trust and nearly died in the process after an unfortunate incident with a bamboo raft and a set of rain-forest rapids. She fills us in on all the details of everything and it sounds like an amazing trip.

What was intended to be a quick cuppa turns into a lengthy evening’s nattering, which eventually ends with her taking her leave about 10pm. K and I settle on the sofa while I do my drugs and watch tonight’s episode of Studio 60, then hit the sack just before midnight.

It’s been a nervous 24 hours here since the cold reared its head and it was made all the worse last night after I spotted a problem with the line into my port through which I give my IV’s.

I noticed while I was doing my afternoon dose that the line had gone a little cloudy, but didn’t think much of it.  By the evening dose, it hadn’t cleared up (as sometimes happens) and had a couple of distinct breaks in the cloudiness which started to concern me slightly.

Anyone with a port-a-cath will tell you how protective they are of them, not least people in my position as the loss of use of a post through breakage or – God forbid – infection is a serious problem: replacing ports is not the kind of thing that can be done on a whim and while it isn’t what you’d term “major” surgery, it’s certainly more than most doctors would like to be performing on someone with end-stage lung disease.

With all these thoughts running through my head, I took the executive decision to not give my next dose of IV’s until I’d been to Oxford to get it looked at and replace the needle and line for a new one.

After a late-night phone call with Mum, we hastily arranged a lunch-time pick up when she finished work (trampling all over any other plans for the day she may have had) and I settled down for the night after pumping another mini-monsoon of First Defence up my nose and downing a handful of Vitamin C caps to try to ward the cold off, too.

For once I slept absolutely beautifully.  Without my morning dose of dugs to do, I slept clean through till 10am, when K’s alarm woke me.  Lucky it did, really, because it didn’t wake her, so she’d have been in a spot if it weren’t for my eagle-eyed sense of hearing. (Yeah, I know, that confused me, too.)  That said, I’m sure she’ll jump to defend herself having already been out of bed once to answer the door to a nice delivery man.

A quick call to my team in Oxford and the ever-brilliant Cass opened up a slot for me early in the afternoon.  I checked with Mum and we were all good to shoot on over once she’d got her morning at work out of the way.

I got up slowly and rumbled around the house, hesitantly waiting for the cold to hit with full force, but nothing really materialised.  My sinuses were much less clogged and though I struggled a little with my physio first thing, I managed to clear a good bit and get my nebs done before Mum arrived.  I grabbed some Lucozade for the journey and hopped in the car, leaving K at home for a study session with a college-mate.

Cass looked me over and gave my port a quick once-over and agreed that it didn’t seem to be anything too untoward, although she’d never seen anything like it either.  She swapped my needle out and reaccessed me, giving it a good flush to check it out and all seemed well.  We agreed that although the cold doesn’t seem to have taken hold, an extra week on the IVs wasn’t going to do any harm.  I can’t have been there more than 20 minutes before Mum whisked me off again, but it was worth the 3 hour round trip for the piece of mind it gave me.

We got home just before half-three and I connected up my afternoon dose of IVs and hit the sack to recharge my batteries.  I woke an hour later feeling really quite energised, hit my nebs and did some physio before dinner.

I think – touch wood – I’ve managed to ward the cold off, so am hoping that another good night’s rest and another day not doing too much should keep me back on the well-wagon and I can look forward to another weekend with family and friends.

Off to catch tonight’s episode of Heroes now – we’re all addicted and we’re only a few weeks from the end of the season!  Hooray!

So Saturday night was a bit of a bump, but Sunday and Monday have been a much more even keel – I’ve stayed resolutely on the positivity band-wagon, although I may have slid sideways a couple of times.

Yesterday morning vanished into nothing – a brief wake-up call at 7am to do my morning drugs dose, but the rest disappearing under the covers after another late night.

Shortly after the turn of noon, having stumbled out of bed, K’s Dad swung by with the visiting boyfriend of her Hungarian cousin.  Actually, technically, I don’t think they’re cousins, but once you get into the Hungarian side of the family I’m afraid I rather lose track of her clan.  I can only just keep track of the English side, but that’s because they’re inconsiderate enough to have 2 Uncle Peter’s, which is just foolish if you ask me.  I don’t see why they couldn’t have drawn straws for a name change to help me out just a little.

I digress.  T’s English was immaculate (handy, considering the state of my Hungarian) and it was really nice to meet him and chat.  K was revelling in getting first-hand details of all the goings on with her Hungarian cousins, one of whom is due to have her first child any day now.  K was keen for T to let his other half know that being an Aunty is “the best thing in the world”.  I ventured to point out that I daresay being a Mum might be considered to top it, but I always get shouted down.

They didn’t stay long, since K’s Dad was taking T off for a round-the-houses meet-and-greet of the rest of Team H over lunch.  I should think he got back to his apartment in London absolutely shattered after getting through the whole gang.

In the evening, we headed over to my ‘rents to catch up with them and have a gorgeous roast.  I know everyone always says it, but my Mum does the BEST roast dinners in the whole wide world and last night she even managed to out-do her usual high standards.  It was but a whisker short of perfection. (The whisker being Tio’s, their lovely little cat, who brought us a wee mouse as a pre-dinner snack).

After dinner we played chilled out and played games for a while before K and I headed home as everyone but me had to be up for work in the morning.  Not that it means I get a lie in as I had to be up for my drugs anyway.  Sometimes you just can’t win.

Today has been a generally un-taxing day.  I’ve not felt 100%, but it’s most just tiredness, largely caused by a busy weekend and the usual end-of-IV-run lack of decent sleep.  Having to be up every 8 hours to do drugs doesn’t sound like a bind, but when you figure it means you only ever get around 6 hours of sleep at a given time, it starts to wear you down a fair bit.

I did manage to catch a movie I’ve been trying to peep for a while now, which actually ended up disappointing me greatly, so I’ll not even go into detail here.  Suffice it to say I’ll not be awaiting the next QT flick as eagerly as I did this one.

Tonight, once K got in from work, apart from nebs and physio, plus another 20 minute bike sesh, we’ve basically just been in front of the telly finishing off the third season of Lost, which just totally blew us away – it’s amazing.  If you’ve never seen it, you absolutely have to go out and get all three seasons in their box sets now and check them out – they’re completely compulsive viewing.

Now there’s just time for another dose of drugs and a catch-up on some of last night’s telly while they go through and it’ll be off to bed and start again in the morning.  I’m determined to be productive tomorrow.  Watch this space.

That’s the sound made by me hitting yet another low after a nice 48 hours of high.

I’ve been um-ing and ah-ing over whether or not to drag down the recent positivity of my posts by indulging in my slight rearward step, but on reflection of the last two days I realised that what this blog started out as was a way for me to keep track of the course of my progress up to and hopefully beyond the point I receive my new lungs.  It seems entirely counter-productive to gloss-over the bad bits in order to spare what few regular readers I do “entertain” on here from being exposed to more difficulties.

Yesterday was actually a really good day – spent largely in bed/on the sofa doing very little indeed recovering from Friday’s grand night in, then sharing a lovely meal with K’s ‘rents which saw us pass over her Dad’s 60th birthday pressie (which is only 6 (and a bit…) months late).  Was worth the wait, though – we got a photograph he had taken in Central Park blown up and printed on to canvas for him and it looks amazing.

It wasn’t until after they had left that the day slid away from me.  Every night I sit at my computer in the study and do my nebs and casually surf around the ‘net for the 15-20 minutes it takes, most often taking in other people’s blogs and catching up on friends’ news.

On Saturday night, I made the mistake (it would appear) of clicking through into Facebook while I was browsing.  It was there that I found a new batch of photos a friend had put up of the festivities at another friend’s wedding.  The happy couple (God bless them, in the most sincere way possible) are friends I used to work with at MK Theatre and have enjoyed many a night out with over the years, both at work and outside.

Clicking through the newly-created photo album (put up by someone who clearly left the party too early if they were awake and/or sober enough to be able to connect their camera to a computer and upload the pics), I was met by face after face of happy, smiling people with whom I’ve enjoyed countless brilliant nights out over the years I worked at the Theatre and, indeed, since I left.

It struck me suddenly – in that sort of round-house punch/kick in the crotch kind of way these things tend to occur to you – that it’s been a very, very long time since I was out with all of them.  In fact, it’s been a very, very long time since any of them would even have thought to bother to ask me to go out with them.  Not through any fault or malice on their part, but simply because they know I wouldn’t be able to join them.

Sitting looking at happy face after happy face, smiling friend after smiling friend, it slowly dawned on me just how long it’s been since I’ve done anything remotely “normal” for a 25 year-old who claims to work in the Theatre industry.  I’ve not been to the Theatre, I’ve not been to the cinema, I’ve not been out for a drink, I’ve not even been out for a latte or “done lunch” – it’s not just “normal” that I’ve missed, I’ve even managed to lose “pretentious” too.

I suppose it’s a positive reflection on my state of body/state of mind at the moment that I can sit here after the fact and see inject some humour into it, but it really did hit me quite hard as I flicked through the album.  Some kind of intense sense-memory came washing over me and I could hear the voices, the laughter, the banter, the music; I could see the suits, the dresses, the dancing, the staggering, the pretty, the happiness and everything else.  I wanted so badly to be back there, to be laughing, singing, drinking, dancing – just being.

When I first started this weblog almost exactly 12 months ago, I truly never would have believed that without my transplant I would still be writing it today, so it is with no little understatement that I suggest it’s not a bad thing to be here – sitting comfortably in my desk chair, living with my wonderful girlfriend, having spent an amazing weekend enjoying the company of my friends and both sides of my family – complaining about not “getting out” enough.   If there was ever a “meaning” to this blog – a reason, plan or intent behind it – it was to remind myself of the good things in the face of the bad things.

So it is with a deep breath in and a sigh of appreciation that I thank Last Year’s Me once again for providing me with a place to come to remind myself that no matter what’s going on in my life, my body or my head, things are never as bad as they seem, that there’s always a light at the end of the tunnel and that the most important thing in life is to keep on keeping on – Smile Through It.

Today I am tired. Today made no sense. I think it’s because I’m tired. But really, it made no sense.

I woke up this morning at 6.30am – that’s really early. Luckily, it’s not dark, because the clocks have gone back. So I woke up in the light. But it was still really early. I didn’t get much sleep last night. It was past midnight when the light went out and I then spent the next hour or so getting to sleep, where I then spent the next four or five hours dozing and waking every hour or so to readjust my position because either a) Neve was coming off my face, b) my shoulder was hurting because of the port needle or c) I was lying too much over on my chest and giving myself breathing trouble.

I woke up grouchy. I don’t think many people wake up at 6.30am happy, but when you’ve slept badly two nights in a row, coupled with not sleeping long enough two nights in a row, coupled with being on really high doses of the most drowsy-making drugs in the world (with the notable exception, perhaps of sleeping pills, which I suppose really ought to win the most drowsy-making award and if they don’t then they should really have a different name, or get their makers sued under trading standards) then it’s pretty hard to wake up at 6.30 in the morning without being grouchy.

I did my drugs. This involves (at the moment) doing about 10-15 minutes worth of injecting solutions from a syringe down the tube then connecting up a big bubble-thing which works like a drip, but in a different way. (That doesn’t make sense, does it? If it works like a drip, then it must be a drip; if it works a different way then it’s not like a drip, is it? Told you today didn’t make sense.) That takes an hour to go through, then it’s a couple of quick syringe squirts and hey presto, all done.

So the whole shebang took me up to about 8am. Every Monday morning, I have a delivery of portable oxygen cylinders to give me enough to move around for the week when I want to go out. Invariably, the delivery driver arrives at 9am. Looking at the clock, tired and grouchy, I decided I didn’t want to go back to bed for an hour just to get woken up as I settle into a nice sleep to have to get up and answer the door. So I try to occupy myself to keep myself awake until 9.

Dutifully, the lovely Brummy gent turns up and drops of my new cylinders and whisks away my old ones. Following which I retire to bed for a catch-up nap, aware that I have to be up no later than 11.30 to get ready to go to the hospital for a physio appointment and drug-level check.

I clamber into bed and strap on my Neve-mask, only to discover that the condensation in the mask has done something – I don’t know what and boy, do I wish I did – which makes something on the mask make a really loud, annoying clunking sound every. Single. Time. I. Breathe. In.

Annoying? Slightly. Grumpy-making? Exceedingly.

After, oh I don’t know…. 5 minutes of trying, I give up and clamber out of bed, thoroughly bad-mooded for the day. I wash the mask up, in an effort to have cleared whatever the problem is for tonight, and sit myself quietly on the sofa to start reading Ian McEwan’s Atonement, which I’ve finally wrestled from K and am keen to get through before having the whole story spoiled for me by people who’ve seen the movie.

Bizarrely, all the time I’m sitting reading, I’m perfectly awake and alert, despite having had not enough sleep and being beside-myself with tiredness when I’d gone back to bed. As soon as I got up from my perch, however – to make tea, to fetch things, to do anything at all, really – I was exhausted. My chest was heaving, my legs felt like lead and my eyes couldn’t have been heavier if they’d entered a Weight Watchers programme and won the prize for world’s worst dieter by gaining their own body-weight three times over.

I was not a happy bunny.

By the time K got up I was happily reading away, but ready for some morning physio, which is never fun at the best of times but when you’re tired it becomes a peculiar kind of torture – long, drawn out, unpleasant, occasionally painful, sometimes exhausting, often breathless and very, very hot (this morning, anyway). Needless to say I ended in a mildly worse mood than I start – impressive, huh?

I did manage to lever myself into a bath and chill out for a fraction of an hour before throwing some clothes on and getting ready to head off to Oxford, only to be phoned and told that the physio I was supposed to be seeing had broken her tooth and wouldn’t be able to see me today, so could I come Wednesday instead? Of course, I said. Why not?

But here’s the weird thing: having not gone to Oxford, which I took to be a blessing on account of my overwhelming tiredness anyhow, my body then decided that actually, it was feeling pretty happy and perky. After 5 hours semi-sleep, a 6.30am start, a morning of trial after mood-blackening trial, I found myself suddenly feeling an urge to sit at my keyboard and write – to carry on with my screenplay with which I have been having so many recent tussles. (For “tussles”, read: “hit a structural bump which sapped all creativity and forward-momentum and left a big black mark against my 5-page-per-day copy book for the last month or so”)

So all afternoon I’ve been beavering away on my screenplay without so much as a care in the world, pausing only for the occasional break for food, water or the odd episode of Lost (just keeps getting better).

I have no idea what my brain is doing with itself, nor what my body is up to at the moment. My chest feels like it’s improving, but my sleep certainly isn’t. My mind is lost in a mire of lethargy which saps any mental strength and positivity right out of it, whilst still apparently providing me with enough drip-fed muse to be able to carry on doing the kind of creative writing which is usually the first thing to desert me when I’m feeling rubbish.

Literally nothing about this day is making any sense to me right now. But I guess that’s just because I’m tired. Can you tell?

I’m not really sure at the moment, if I’m honest.

My body and my mind are all over the place and I can’t decide what to do with myself from hour-to-hour, let alone day-to-day.

Frustration is playing a key role in whatever I am doing at the moment, though, driving me to distraction.

For the last week or so I’ve been sleeping incredibly badly – not being able to get off to sleep and then waking every hour or so until the early hours when it tends to increase to to a whopping 20mins of sleep at a time.  It’s been driving me bonkers.  Also, of course, it’s left me with very little energy to do anything with myself all day.

Once I’m tired, I’m also absolutely horrible to be around.  I’m sure most of us aren’t at our best when we’re lacking a bit of shut-eye, but I know that when I’m sleepless I’m at my very, very worst.  For all the days K’s spent laughing at me and with me when we both get the giggles when we’re tired, I’m sure she’s now found out that when I’m really tired giggles are nowhere to be found.

Lack of sleep also causes more and more worries as well.  I’m well aware of the fact that it’s when our bodies are at rest that they repair themselves and set themselves up for another day.  As you’ll know from the more recent blogs, I’m also increasingly aware of the frailty of my body and the desperate need it has to keep itself ticking over.  Missing out on crucial rest time bothers me big-time because I know how precious a resource it is.

More than all of that, though, the more tired I am the more frustrated I get with myself and with the things around me.  My energy levels are so low that doing anything other than sitting and surfing the ‘net causes me to feel like I’ve been running around a football pitch for hours.  Without the rest it needs, my chest will start to moan and complain if I do much more than make a cup of tea and I can really feel my auxiliary muscles working overtime just to keep the oxygen flow going through what’s left of my lungs.

I’ve been struggling for the last couple of months with pain in my back and neck where the over-worked auxiliary respiratory muscles are tensing up and causing all kinds of different, unpleasant aches and pains, which in turn makes it harder to sit properly or carry myself as I should, which only then serves to exacerbate the problem with my back and neck muscles.  It’s the very worst of vicious circles that no one seems to have identified a way out of yet.

There are so many things I’d like to be doing with myself at the moment, projects I’d like to be working on, writing I’d like to be doing, but it’s the most I can do to get through a day without going mad at the moment.  My brain certainly doesn’t feel switched-on enough to achieve much beyond the occasional email.  I don’t think I’ve had a creative thought-thread for a couple of weeks now, which really gets me down.

Still, it can’t all be doom and gloom – there’s good things in the world. (Best not get on to last weekend’s sport if I’m looking for sunshine, eh?).

My bro was back for a couple of days over the weekend, which was really nice – he’s away so much doing this, that and the other that it’s been really good to see him and catch up a bit.  He seems really happy in what he’s doing, which is so good to see.  I get a real kick out of seeing my family and my friends doing things they really enjoy – I suppose it’s a kind of vicarious pleasure that I’ve lived with for a while now and I have always felt it most strongly for the things my bro gets up to.  If he’s happy, I’m happy for him.  And he’s always happy, because he’s that kind of bloke.

I know I could be doing a lot worse, too.  My chest isn’t 100% – an understatement, I suppose, of rather dramatic proportions, but then everything is relative – but it’s holding on there for the most part.  It could be much worse and I could be properly laid-up, which I’m not, so I should really not be complaining too hard.

I suppose that when frustration bubbles up it’s often hard to see the good for the bad – the wood for the proverbial trees, as it were – and it’s all too easy when tiredness attacks to let it drag everything down with it.  Positivity is a precious resource in and of itself, so I suppose what I really need is just the energy to go and mine some more of it.

The good news is, I don’t have a cold. The news-that-isn’t-really-good-but-considering-
how-bad-“bad”-could-have-been-really-can’t-be-counted-as-being-bad (phew!) is that my body is keen to make me perfectly well aware of the fact that’s it’s been working very hard thank you very much and has decided to tell my legs, head, arms, neck and just about everything that’s not a vital organ to stop working for the time being. Essentially, my body is currently the French rail system.

Still, compared to dealing with a cold, I can definitely put up with feeling a bit tired and finding tea-making a chore. If I had to spend the next week in bed doing nothing and seeing no one, I would happily accept it for not having a cold. As it is, I am hoping to be able to make it over to my ‘rents tomorrow night for the Rugby, although there is the slight hitch that I may expend so much energy on screaming at the telly (judging by the semi-final), I may not be able to drive myself home.

(I’m acutely aware that the end of the last paragraph will have been hopelessly lost on my American cousins who look in here, so for translation’s sake: there’s a World Cup (think “world series” which actually involves other countries) going on in the sport of Rugby (“Football” without the nancy-boy pads and tea-breaks every 30-seconds) and England (that’s us) have made it to the (Grand) Final, which is somewhere akin to the Texans making the Superbowl (ie, so outlandish at the start of the competition that if you’d suggested they might do it, people would have either laughed in your face or had you committed).)

I’ve made a deal with my body – limbs and all – that I won’t do anything at all during the day tomorrow besides rest and refuel so that I can enjoy the game in the evening, and that I will do the same on Sunday so I can enjoy a meal in the evening with my bro, who’s deigned to reappear from the far side of the world where he was “working”. I use the term “working” very loosely, as he mostly seemed to spend his time sitting up a mountain finding it hard to breath. Heck, I do that in my own living room – I don’t try to call it work.

The only possible barrier to the deal on Sunday is that the Saints are live on TV, but judging from our performances so far this season they aren’t likely to be causing me a great deal of excitement or giving me much cause to scream at the telly. More likely I’ll be slumped in resigned resignation (it’s doubly bad, you see) as they let another 2-goal lead slip away and wave good-bye to another 3 points at the hands of some woeful defending while George Burley makes excuses about us “playing well”.

Still compared to spending the weekend lying in bed with snot dribbling out my nose, my throat closing up in protest, my chest kicking off in a major way and the beginnings of the mother of all chest infections, I think I can handle any sporting disasters coming my way.

It’s all about perspective, see.