Archives: Hospital

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.

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 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.

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!

Up to Oxford today for my mid-IV once-over, during which all signs were pointing to “pretty good”.  “Good” is obviously a relative term, but compared to last week, where I was perched on the verge of a bit of a down-turn, things are doing pretty well.

Lung function is up to 0.75/1.5 from 0.7/1.2, which is a goodly leap (18%/30% from 17%/24%) in the space of a week, my sats are holding steady around the 90% mark on 2l O2 per minute and my exercise tolerance is improving.

Yesterday we took delivery of a brand new exercise bike from the lovely Fitness for Hire, a company who loan out exercise equipment so you can see whether or not you’re likely to get into the habit of using it without throwing away a whole heap of dough on something that’s just going to sit and gather dust.  We’ve loaned it for 4 weeks for starters and if it doesn’t get used, it’ll just go back, no hassle.

The theory is, according to the Physios-Who-Know, that working on a bike is easier on the chest/lungs than step-ups with Goliath as the tendency is not to desaturate so quickly.  I don’t know why that is, or exactly how the process works, but what it basically means is that by using the bike I will be able to do more exercise without getting so out of breath.  This, in turn, should mean that I can make my muscles do more work, rather than my lungs stopping me before my muscles really get a work out, and the muscular improvment will serve to improve the flow and use of oxygen around the body, meaning that I require less oxygen to do everyday tasks, which means I get less breathless while doing them.

Theory is all well and good, but we know how my body likes to throw googlies (or curveballs, if you’re more comfortable with the American vernacular), so having the option to bail out on the purchase of a hefty piece of equipment is a good option for right now.

I have to say, having had a wee spin on a bike at Oxford today, it certainly looks promising as a less intense form of exercise.  Obviously, there are different levels of resistance and speed settings and a whole host of other options, but the great thing about it is that the very basic starting point is easily managable, giving a lot more leeway in terms of turning things up or down as my chest may dictate from day-to-day.  The trouble with step-ups is that they are very set-in-stone – it’s a set distance, with a set weight (my body-weight), over a set time.  The bike, on the other hand, has myriad ways of making things easier or harder as my body goes through it’s yo-yo routine.

Once again – and as usual – we’ll wait and see what comes of it.  I don’t want to get too over-excited at something that’s just going to fall by the wayside again, but the promise is there for something with potential.

Sadly no progress on the script today, because the trip to Oxford has pretty much sucked the energy out of me, so it’s probably a night in front of the TV tonight, maybe catching a flick or something.  But it’s been a positive day, so I’m not going to moan about a little bit of tiredness at the end of 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 in the mood to write a really witty, random, stream-of-consciousness blog tonight, but I can’t because a) I’m knackered and b) I’m knackered.  Also, I’m pretty knackered.

(Incidentally, when I say “in the mood” what I really mean is “tired” since all of my best stream-of-consciousness is always written when I’m tired.  But not this tired.)

(Incidentally, it’s just occurred to me that I can remember the very lesson at school at which I learnt how to spell conscious and consciousness.  Odd, isn’t it?  That and “immediately”, although they were different lessons.  In fact, the teacher who taught us “immediately” taught it to us with a rhyme and to this day I can’t type “immediately” without the tune going through my head.  Weird, huh?)

Anyway, knackeredness (yay, new word!) caused largely by Oxford trip today, coupled with start of IVs, which I really should have predicted but thought I could get away with.  My wonderful physio set me straight, though, and made me see the better of kicking off today as opposed to Monday as was my wont.

For all you stat-monkeys out there, today provided a L-F of 0.7/1.2, Sats of 90% and a weigh-in at 54.4kg.  All of which is really not that bad, really.  But with increasing morning headaches, poor sleep and a newly-discovered need to turn Neve up just a trifle over-night, it made sense to kick off some IVs and head-off whatever may be on its way before it decides to settle in for the winter.

First dose this afternoon went fine and dandy, steroids started with them, so expecting huge appetite to kick in sometime in the next few days, too.

Can’t think of anything more to say.  Immediately — it’s such a nice song.

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.

I don’t like the change in the weather and I don’t like the on-set of autumn/winter. The change in seasons brings with it, every year, an abundance of new colds, flu’s, viruses and other horribleness and it makes life that much more worrying when you’re desperately trying to keep yourself well enough for a life-saving operation.

Yesterday I developed that odd feeling in the back of your throat, the little tickle-come-small obstruction you feel when you swallow which often prefaces the on-set of a cold or sinus infection.

If I’m honest, it’s petrifying. The last time I was unwell with any sort of cold/virus-type thing, it lead to the worst chest infection I’ve had for years and my body very nearly gave up the ghost. If it were to come around again, if the tickle becomes a cough, if the cough becomes a cold, if the cold becomes something else, it doesn’t really bear thinking about right now.

Try as I might, though, I can’t escape the thought of it. If someone tells you not to think about elephants you can guarantee that they’ll be singing, dancing and tooting their way ear-to-ear for the rest of the evening. An impending cold is very much the elephant in the room.

I’m suddenly hyper-aware of every creak and tweek my body makes, each breath that feels shorter becomes a worry, each cough that feels irregular concerns me. I’m doing whatever I can to get food, drink or any kind of calories down my neck in the hope of giving my body the energy it needs to nip this in the bud before it takes hold.

It’s impossible to know if any of it is likely to work – it’s impossible to know right now whether it is even the start of a cold or just a strange feeling in the throat. It’s impossible to know anything at all, really, which is, again, part of the problem I suppose.  I’m waiting through each passing moment to see what my body’s going to do, to see if I’ve done enough to see it off.  I’m on tenterhooks.

The one morsel of comfort I’m dragging from deep within my reserves of pluck and fight is the fact that as bleak as it seemed to get last time, I pulled through it – I fought my way out of it and afterwards I enjoyed some of the best fitness I’ve had for the last 12 months or so. Should I be facing the same fight again, I can only keep telling myself that I’ve been here and done that, and I should really look into getting a T-shirt.

It is inevitable that the ups and downs of life on a waiting list as fluid and unquantifiable as transplant are going to be increasingly hard to bear – each trough will reach deeper than the last and each peak will seem higher, whatever the physical stats may show.

Without fight, though, where would we be? Without the need to push ourselves forwards, to fend off the onslaught of the outside world against our frail bodies, how would the human race have come as far as it has?  How would we all make our way through our day-to-day lives?  My fight is no more than anyone else’s, merely against a different enemy, on different ground, with different markers of success and failure.

I suffer the slings and arrows of outrageous fortune, and I choose to take arms against a sea of troubles, but I know that without the help of the transplant team at Harefield, no amount of personal opposition will end them. All I can do is to my own self be true, and keep fighting the fight till the clarion call of a new life comes my way.*

*Apologies to W. Shakespeare