It’s closing in on 4am and I find myself sat in the lounge at my parents’ house if not quite wide awake then certainly not sound asleep.  Since I finally gave in to my night’s chronic lack of slumber just over an hour ago, I’ve been wondering to myself whether this point marks a new low in my struggle as it has been.

It’s extraordinarily tempting to call it that, but putting tiredness and busy-headedness to one side, if I try to clear up the picture a little bit I suppose it’s hard to suggest right now that I’m worse off than I was when I was admitted to Oxford back in June.

Certainly, chest-wise, I’m not doing as badly as I was then.  Yes, I’m still finding every day a struggle and breathlessness is increasingly a problem throughout the day, rather than being something which tended to isolate itself to certain times or periods which could be identified and focused on.  And yes, every night is seemingly harder than more recent times to gather myself and settle down to sleep – the effort of undressing, of washing both myself and my equipment, of simply sitting in bed reading is considerably more noticeable than it was a week or more ago.

On the other hand, I’m not spiking the temperatures I was spiking in June, nor am I confined as I was then to my bed, fighting for breath even at rest and needing the highest flows of oxygen I could muster with my various concentrators to see me to the bathroom and back.  I am, on the whole, physically better off than I was back in June, although it is tempting to be blinded to it by the storm of exhaustion that has settled in to my quiet little dwelling.

I can only surmise, then, that if I am physically better off than I was in June then in order to be feeling quite as badly as I do about things at the moment, then my head is very far from in the right place.  There is a line of which people often speak between living and existing – an invisible, intangible and yet undeniable line over which the simple matter of getting through the day becomes the be-all and end-all of one’s ambitions.  I am not entirely sure I have reached such a line yet, but for the first time in a long while it has become more to me than a mark on a road map which I may be approaching.  Rather, it is now a hazy, not-so-distant shimmer which presents itself as being not as far away as one would like or hope it to be.

At the end of last week, K and I made the executive decision to take ourselves back to Chez Parental in order to afford K more time to study for her college finals in a 2 weeks’ time and prepare for her uni interview without having to look after me and without me having to worry about whether she was spending too much time on me and not enough on herself (something at which I am incredibly bad at – I spend most of my life worrying that she’s worrying too much, which is a vicious circle in itself).

My mood, however, has not taken to the holiday particularly well.  I have no idea if it is purely coincidental, or if coming home carries an air of admitting defeat or some other such nonsense, but since settling back in here I have been distinctly more negatively-focused and have noticed the difficulties over-and-above the advantages.

Interestingly, I don’t think it’s particularly anything about being home, but more a reflection of the general difficulties I’m struggling with physically at the moment.  The biggest problem I’m facing is one of discomfort – I find it almost impossible now to be comfortable in any position at all.

Lying down is fine enough, but only if I am truly horizontal, which makes doing anything at all nigh-on impossible.  From there, there is lying propped up, which stresses my lower back and neck, there is sitting up, as on a sofa, which stresses my neck to the point of causing headaches and my upper back and shoulders causing breathlessness.  Sitting bolt-upright in a well-supported armchair is about right, but if the back of the chair is not vertical – like the study chair at home – my neck once again takes the strain if it is not supported or rested back.

When sleeping is a problem, it can at least be countered with good periods of solid rest during the day.  But when solid rest is completely unachievable – when it is impossible simply to crash out on the sofa and watch mind-numbing TV or brain-absorbing DVDs – lack of sleep becomes just as debilitating as a lack of breath.

When all of these factors are totted up and combined with headaches, odd, unidentifiable but frequently worrying chest pains, cramps and stomach aches on top of it, life becomes a roller-coaster of moment-to-moment misery through which you ache to enjoy that odd glimpse of sunlight glinting through the clouds.

That’s not to say I haven’t enjoyed glimpses of golden rays in the last week, nor that the world is entirely shrouded in blackness, but compared to the fights and struggles I’ve had before, this one certainly feels like it’s ramping things up a notch.

I’m not entirely sure what the point of all the above is/will prove to be, other than a manner of half-an-hour’s distraction in the early hours of the morning and an outlet for all the mixed up frustrations which are mixing themselves up in the pressure-cooking wash-bowl of my head.  The dregs of an active, lively mind are swilling around up there somewhere, drained of colour and vibrancy by the hour of night and relentless, restless energy. 

If nothing else, I suspect this will go to show in the weeks to come the extent of any improvement on my part.  I can only hope that it marks the nadir of my fortunes and that things are all-the-way upwards from here.  If not, this is going to be a pretty hard place to visit.

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’m feeling awful at the moment – my cold has hit with a vengeance and is dragging me down big-style.  Most irritatingly, it’s gone to my throat, which makes clearing all the usual gunk off my chest incredibly hard as a tickly cough makes doing good-quality physio almost impossible.  Coupled with that, obviously, the gunk that is there anyway (which isn’t getting cleared) is now getting thicker and heavier and nastier with all the cold bugs in it, too, which is making breathing and life in general incredibly hard.  It’s basically one great big heap of can’t-breathe-very-well, feel-like-cr@p, need-to-sleep-for-weeks poo.

Of course, me being me, the easiest and most obvious course of action is also the one that my body objects to the most, namely sleeping.  Because of all the rubbish on my chest which I’m not clearing, I’m loaded up with stuff which is making breathing hard anyway, but as soon as I try to go anywhere near horizontal (or even just slightly leaned-over) it all starts rumbling around even more and giving me even more problems.

So last night I managed a grand total of about 2 hours sleep and that was taken pretty much because my body literally couldn’t keep my eyes open and my brain turned on any more.  No matter what position I was in I would be in some form of discomfort, which was either back pain, shoulder pain, chest pain or all three combined with inability to breathe.  I tell you something, struggling to breathe on a machine that’s suppose to help you breathe is not a pleasant sensation.

So last night wasn’t good and this morning wasn’t much brighter – what with the distinct lack of rest and still rumbling chest.

I have, however, made it through to the afternoon now and things are brightening up ever so slightly.  My biggest problem has been getting comfortable, as whenever my breathing becomes a problem now it causes all sorts of chain-reactions through the rest of my body, specifically back and neck pain which makes sitting in most positions either painful or hard to breathe.

Most annoyingly, it’s the positions you would imagine to be the most comfortable that I struggle with the most – sitting on the sofa causes huge neck pain, sitting in bed causes lower-back pain and breathlessness and sitting in the comfy chair in the living room causes one of the two, depending on how I sit.

Ironically, sitting bolt upright in the desk chair at the computer is currently my most chest-friendly position.  I’ve been in front of the screen for a little over 3 hours now and I’m feeling the best I have all day.  I suppose there’s no excuse for me not being productive, is there?  Although my brain isn’t entirely switched on at the moment.

Anyway, I thought I’d take the opportunity to catch up on some online diarizing and catching up on the US Writer’s Strike, which has got me bizarrely hooked.

I’m hoping a better day, a better throat and some better physio means that I’ll be able to get better sleep tonight and things will duly improve tomorrow.  The resurgence of the cold has coincided once again with the scheduled end-of-IVs, so I’ll be back at Oxford tomorrow but look set to continue into a 4th week of the mega-drugs.  Better than ending up feeling even worse and going back on them in a week or two anyway.

I’ve long held an affinity for the way the American’s make their television.  They have a solid work ethic, a prodigious output and some incredibly high-quality programming which is all churned out based on a very rigid formula of writing and producing a season of some 20-25 episodes per year.

Most US shows work on a rolling basis, with a team of writers (the “Writers’ Room”, supervised by the Executive Producer/Head Writer or “Showrunner”) coming together to pitch storylines, plot character arcs and map out the direction of the show for the coming weeks and months pretty regularly, then going away and writing individual episodes alone.  Every show has a slightly different way of doing things, but most hour-long or half-hour shows work to the same essential template – Lost, Desperate Housewives, 24, Bones, E.R., Scrubs, House, Friends, you name it, they’re all run the same way.

A big part of the success of American television, of course, is the sheer size of the budgets that they throw at their dramatic or comedic output.  Compared to the cash we spend on our “series”, the Americans spend a small fortune on each episode, treating each 43-minutes of screen time (for an hour-long show, to make way for the commericals) as a mini-feature film.  We might think we have big-budget blockbuster shows over here, but even our biggest extravagances like Dr Who or Robin Hood pale in comparison – and they only run for 13 eps a season.

This extra money goes not only into “on screen” elements, but also means that they can afford the “writers’ rooms” which create the shows, something which is prohibitvely expensive over here.  If you’re creating a 6-part series (as most shows are over here, ignoring the tent-pole BBC Who and Hood and the “continuing dramas” which we refer to as “Soaps”), it’s much cheaper and easier to use one or two writers to write the whole thing, with a little creative input from the Producer(s) and possibly director(s) as you go than to hire a team of writers to work together on it.

In any case, British writers aren’t schooled in the writers’ room methods, meaning that even if we did try to do it their way, we’d probably end up turning out TV-Camels* rather than the American’s well-practiced Horses. (That said, there are still a huge number of US shows which fail to hit the mark and never see more than a few episodes or a single season.  Just look at Studio 60, or try Googling “Viva Laughlin”, it’s just that we rarely see them over here because our networks don’t pick them up)

All of which is just a long preamble into talking about what’s going on in the States at the moment, namely the Writers’ Guild of America strike which has seen writers from all of the country’s top shows – as well as their rubbish ones, too – down pencils, power-down desktops, shut their notebooks and hit the picket lines after negotiations on their new contract with the studios who produce their work broke down.

Essentially, the Writers’ Guild of America is like any other labour union (or, since they’re American, labor union) in that they negotiate the basic rates of pay that their members can expect and, indeed, demand, if they are working on studio movies and/or TV shows.  As part of the minimum deal, writers are entitled to “residuals”, which means every time the show is aired on TV, they get a small payment (based on what money the Studio makes) and every time someone buys a copy of the DVD they get a small payment.  As it stands, they receive a whopping $0.04 per $18.99 DVD sold.

The main bone of contention, however, is not with the DVD residuals (although they would like to double it to $0.08 per DVD, it’s not a deal-breaker, by most accounts), it is with digital “airplay” – the streaming of episodes via the Studio’s websites or the downloading of the shows through new-media outlets like iTunes and their ilk.  Right now, the writers who create the shows and are valued enough to earn good money and acceptable residuals on TV-play and DVD-sales get nothing for internet use of their work.  Nothing at all.

Now, the in’s and out’s of all this are clearly numerous and well-covered in many places across the ‘net – if you want to know more and more specifics, click the logo above right to go to the striker’s website, or see the explanations on YouTube – but suffice it to say from me that it seems completely, bafflingly down-right criminal that the Studios should be claiming that they don’t make money from paid-for downloads of shows and from the advertising they sell to tack on to the streamed versions.

The writers, honestly and fairly I believe, think that they are entitled to a similar cut of the profits of their shows from the internet as they get from all other forms of their distribution.   And since it’s very likely that more and more TV is likely to be seen via the ‘net in the years to come – indeed, many people are predicting that the ‘net will become the primary source for our television consumption in the next decade or so – it stands to reason that the writers want in on it.

There are always going to be the people who disagree with the principle of writers receiving residuals for work they’ve already done and I’m not really interested in trying to turn those people around, but beyond there I don’t see how anyone can say that writers don’t deserve a cut of the digital profits.  It’s not greed, it’s just fair and decent.  If you accept the principal that they should be paid a cut of the profits from screenings and sales of their work, then online sales has to come into the equation.

Anyway, all of that is a very, very long-winded and roundabout way of saying that I’m wholeheartedly supporting the American writers in their strike action and that if I were being paid to write now, I’d be putting my pencil down and if I could walk more than 10m without needing a long sit-down, I’d be with them on the picket lines.  If I was in the States.  As it is, I’ve just signed this petition.  Which is about all I can do, as well as urging you to do it too.

For now, the strike is having little impact on our TV schedules, but if it goes on more than a few more weeks, we’re going to see pretty big holes open up in our Spring schedules, including things like Season 2 of Heroes, Season 4 of Lost and many others besides.

It’s nice to write about something other than feeling rubbish.

* the old famous saying, “A camel is a horse designed by a committee.”

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!

Not much more to say, really.  Am feeling utterly deflated that at the end of 2 weeks’ IVs which have boosted me rather wonderfully and got me feeling very good and positive, I wake up this morning with puffy, stuffy sinuses and a whisper of a headache, which has spent the day hovering between going away and worsening into full-blown cold.

There’s not a lot I can do to keep it from setting in full-blown, I don’t think, certainly no more than I’m trying, which is lots of rest with lots of calories and spraying First Defence up my nose like teenage boys spray cologne on a night out.  The plus side, I suppose, is that at least I don’t smell as bad as they do.

Thinking about it, I suppose I have to take the blame for the onset of the cold, since I did make the mistake of saying yesterday that I wanted to be productive today and get things done.  If this blog has proven one thing over the last 12 months, it’s that whenever I talk about getting things done, something crops up to get in the way of it.  I really should learn just to keep my mouth shut.

Realistically, it’s more likely than not that the cold is simply my body’s reaction to a frantically busy weekend – it’s a long time since I’ve had 3 night’s of “entertainment” in a row and although I rested a lot in the day times, it must still have worn me down.

It’s frustrating and – as always – a little scary to be coming down with something, but at least I have the security of knowing that I’m getting it at my very best point physically.  I’m just a day from finishing IV’s (which will now be extended by another week to cover any knock-on effects from the cold) and still on steroids, which means my appetite is good, my chest is as good as it ever gets and I’m firing on as many cylinders as I’ve got.  If there is ever a “good” time to get a cold when you’re aware of the possible consequences to a pair of dodgy blowers, this is it.

So I’m off to get some more physio done, shovel down some more food, suck down some more Lucozade and pray to the Big Guy to keep this one mild.  All help appreciated, if you’re so inclined.

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.