Monthly Archives: October 2007

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.

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 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?

…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!

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.

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

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

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

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

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

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

It’s all about perspective, see.

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

Does exactly what it says on the tin.

Happy Birthday, Mummy dearest. xx

Today, I have felt good ALL DAY.

It’s a mystery where it’s come from, and I don’t harbour much hope of it lasting into the weekend, such is the nature of my up-and-down life at the moment, but damned if I haven’t enjoyed it today.

I woke up this morning after a good night’s sleep (which is rare enough) not feeling horrible.  As I plodded around the flat after rousing myself from the bedroom, I waited for the inevitable on-set of hideousness which usually hits about 20-30 minutes after I get up, but it never seemed to materialise.

I had the smallest glimmer of a headache after doing my morning physio session, but I hurriedly popped some paracetamol and ibuprofen and by the time I’d done my nebs it had passed, never to return.

We were joined, late morning, by our little niece and nephew on a spur of the moment visit with their mum.  There’s really no better way to start your day than with the fun and laughter of a pair of adorable children.  I even had enough energy to police the tiny terror as he rampaged his way around the flat – a job that’s normally delegated to K or his mum.

In fact, he didn’t cause too much chaos being mostly occupied as he was with emptying the fruit bowl and putting it all back again, before deciding to re-home most of its contents around the living room.  We’re still finding oranges in the most unlikely of places and I’m sure we had a lime earlier, too.  His main occupation after fruit picking was wall-drawing, but we managed to get away with just the mildest hint of blue in the hallway, largely down to the grown-up party-poopers who kept spoiling the fun.

Once they’d gone – with the elder of the two climbing backwards down the stairs (all 18 of them) on the way back down the car park, cheered on by her little bro who would doubtless have been counting them down if he had any concept of numbers – we had time to chill a bit and grab some lunch before I ran K to the docs for a quick hello.  From there, since it’s just down the road from her ‘rents, we stopped in for a quick cuppa, which is lovely because it’s a good 20 minutes from our place and we don’t get to do it very often.

When we got home, another of our friends popped over, enjoying his day off, and while K busied herself baking in the kitchen, we sat through Fantastic Four: Rise of the Silver Surfer.  It was awful.  Not just not very good.  It was abominable.  Like the snowman, but with less fur.

Mr S, who brought it over, had refused to see it at the cinema on the basis that he was sure he wasn’t going to like it, so thought it would be amusing for the two of us to sit through the DVD together on the basis that we’d both spend most of the film shouting obscenities at it for being so rubbish.  We, unfortunately, share a few friends who suffer under the delusion that it’s actually quite good and would be very upset to hear us bad-mouthing it all the way through, so this afternoon proved very useful for both of us.

Seriously, though, it’s AWFUL.  Don’t touch it.  Not even for the kids.

Since then, I’ve managed my neb and second physio session and nebs (lots of those, these days) and am still – touch wood – seemingly going strong.  Dinner shortly, then a catch up on last night’s telly, methinks, before hitting the sack for what I hope will be another bonza night of sleep.

You never know these days how long the ups are going to last, but I seem to have perfected the art of making the most of them when they are around.  It’s good to feel good.