Pootling along nicely

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.

First Draft Finished

It’s taken me a bit by surprise (the whole thing seems to have wrapped up rather quicker than I expected it to) but I have this afternoon completed the official first draft of my screenplay! Am incredibly chuffed.

There’s still a way to go with it – I know for a fact that there are at least 3 scenes I want to revisit already, plus some minor points to fiddle with, but technically, I reached the point at which you write END on the page, which makes it a completed draft.

I’m hoping to have the 2nd draft done in a week or so with my minor tweaks and then to be able to print it out and comb through it in detail to come up with a 3rd draft that I’ll be happy to start showing people.

I’m happy.

Today makes no sense

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?

Let’s welcome…

…the IV mood swings and energy dips, Ladies and Gentlemen!

Like all good anti-biotic courses (or at least all of my regular IV courses), it doesn’t take long to start really messing with your body in as many ways as possible.

So far we’ve got: random tiredness springing up out of no-where; random waking-upness springing out of nowhere; unquenchable thirst; over-bloating from taking on too much water; dry mouth; raise appetite; sore limbs/achey legs; irrational dip in mood; irrational spike in mood; regular-season, common-or-garden tiredness.  Although so far (with plenty of wood on hand to touch, knock-on, slap my head against etc), I’ve managed to avoid the usual mouth-ulcers and other thrush-like symptoms.

I have delighted, however, in spending 2 days doing pretty much nothing at all, including going back to bed after my a.m. dose and sleeping through practically the whole morning.  The one thing you can guarantee about IVs is that if they make you feel tired, sleeping is the most wonderful counter to it.

I appreciate that might sound a little “well, duh!” obvious, but it the kind of situation I’m in, it’s actually not a given that sleep helps things.  A lot of the time, the tiredness I feel isn’t actually helped out by sleeping an extra 3 or 4 hours, like you might expect.  It’s a kind of false-tiredness which is more a complaint from the body about having too much work to do than anything else.

On IVs, though, it’s a different story.  The tiredness is much more a sign of the things starting to work and almost begging to be given more down-time in which to do their stuff while not having to concentrate on boring things like day-today operations of eating, drinking and sitting upright.  What that happily means for me is that the next few days will be spent fitting in 12-14 hours of sleep in every 24 and actually feeling refreshed for it when I’m not sleeping.

IVs are pretty rubbish, so grabbing hold of the positives is pretty important and it wasn’t really until today that I realised how much the sleep-inducement of IVs can actually help-out, so I’m going to cling to that for the next few hours while I try desperately not to drop off from exhaustion while I wait for my next dose.  That’s the other problem with IVs – if you sleep at the wrong time, you can guarantee that it’ll come back and bite you on the butt and keep you WIDE awake just when you want to be getting the best of your shut-eye.

Anyway, moving away from all the boring medically-stuff, K and I picked up the 3rd season of Lost on DVD this week.  I say picked up, I mean had the nice people at Play.com deliver for us.  We were both hooked on the first two seasons but then missed out on the 3rd when it switched from C4 to Sky One, so we’ve been itching to get our hands on it for ages now.

Finally, we’re back on the wagon – or off it, I suppose, since we have kicked-off a major addiction which is currently managing to over-rule just about everything else in the world apart from sleeping, eating and doing doses of IVs.  In fact, it’s ideal really, because if I’m going to be making the most of these IVs I really do need to be doing as little as possible, so Lost is keeping me in check, glued as I am to the sofa for endless back-to-back episodes.

The trouble is, we’ll be through this season in no time, and then we’ll be lost without Lost.  So I’m thinking we might have to find some new old TV to catch up on in DVD box-set format.  US TV comes in such handy little 40 minute chunks that it fits perfectly into little treatment slots like gaps between nebs and physio and doses of IVs, so it’s ideal for life at the moment.  I think we may be getting through a lot more soon.

But first it’s back to the island to unravel more of the might mystery….  It’s sooooo good!

More IVs, but it’s OK

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.