Archives: Day-to-day

So, it turns out I’m not really very good at this adapting lark.

On an evolutionary scale, I’d be stuck somewhere around the fish-with-lungs kind of level – broaching the edges of a vast transformation but not quite grasping the basics of the new world laying itself out before me.

Everything is tiring.  Not just averagely sleep-making, I mean tiring.  Moving from one room to another if I have to slip off my O2 to change supply (because, let’s face it, I’m not about to raise the subject of O2 lines with Allied any time soon, even if it was an idea that appealed to me, which it doesn’t) can lead to a required recovery period of several minutes if not longer and the merest hint of further activity leaves me body screaming for bed.

The biggest problem I have is learning to listen to what my body’s telling me and then making the appropriate decision and acting upon it.

For instance: this evening I am beside myself with tiredness.  I didn’t sleep incredibly well, waking fairly often through the night in discomfort and from odd dreams.  Today, my wonderful Godson came to visit and we had a great day playing games and watching movies and just generally hanging out.  But it’s left me completely shattered.

The most sensible course of action would seem to be to take myself off to bed and sleep, but he left at 6pm, which means that if I’d slept for an hour or more at that point, which I desperately wanted to, I know that come 11pm tonight when I’ve finished my evening IVs, I’d have been unable to get myself off to sleep.

So I tried just taking myself to bed and relaxing with a book, which worked for a while before tiredness crept in and made the book a blur, on top of which the urge to spend a little more time with my soon-departing bro crept in.

I came downstairs and settled in the kitchen (comfortable but not sleep-able) to read some of the Sunday paper and we had some left-over scraps from lunch for our supper with Mum and Dad before he left.

But I’m still no better off in the tiredness stakes, and I don’t really know what to do about it.  I know that, listening to my body, I should be in bed right now, but I have a dose of drugs to do in an hour’s time, which will take an hour to go through, and if I fall asleep before then and have to wake up for them, that’ll be my night totally ruined.

I suppose one could argue that if I have nothing to do during the days, perhaps it doesn’t really matter what time I sleep, so long as I’m getting enough rest in during the day.  I could, for example, live like a badger and stay up all night watching the Ashes and take myself to bed when the day dawns, but I’m not sure that’s the answer.*

For one thing, being up all night on my own I know I wouldn’t feed myself properly then I’d miss all my day-time meals and so end up losing weight, which I really cannot afford to do.

Further to which, if I needed anything, had a nasty turn or my oxygen went funny or anything like that, it would mean rousing the house to come and help me, which I’d be mortified to do – it’s bad enough having to get someone else to make me cups of tea when I want them, or shifting oxygen tanks around on my whims, let alone getting them out of bed when they’re supposed to be resting.

What I really need to do, I think, is to find something which will keep me happily occupied in bed for a large chunk of the day – a computer game, or internet-linked lap-top or the like.  The problem with all of those options being that I don’t know how long I’m here for and they’re ridiculously extravagent things to entertain me when there’s a perfectly good TV downstairs.

I just can’t get used to spending a day on a sofa, though.  Daytime telly is bad enough (and I still can’t force myself to watch it, no matter how ill I am), but I’m also just not comfy on the sofa all day.  Odd, really, given I’d be quite happy in my bed 24/7 if I had summat to occupy myself with.

This is all one big crazy ramble now, largely caused by the constant fight to keep my withering eye-lids from gluing themselves together and calling it a night, but essentially it comes down to an “answers on a postcard” poser, really.  Any cunning plans for occupying myself whilst enforcing a strict “not out of bed” rule?

I’m determined to get better at listening and – hopefully, one day – pre-empting my body’s mood swings.  I used to be pretty good at it, but I seem to have lost my touch of late.  Here’s hoping it’s not too long before I get it back again…

*That’s not to imply that it is common badger behaviour to watch cricket all night, it was more an inference to nocturnal awakenings.

I mentioned in the middle of last week having a bit of a to-do with Allied Respiratory, the new home oxygen service providers.

At that point, I was mildly full of grumble because I’d cancelled a hospital appointment and spent my entire Thursday waiting in for the oxygen engineer to call round when he’d phoned at 3.30pm to tell me he wouldn’t be coming because the job we’d asked him to do was a 2 hour job and he didn’t have time in his day to do it.

I’d remonstrated with him, and also pointed out the rearranged hospital appointment, at which point he agreed he could at least swing by and drop off a back-up cylinder for the flat and a couple of portables that would at least give me enough oxygen to make my trip to Oxford the next day.

One thing he said did strike a deep note of caution into my brain, though, when he dropped off the portable cylinders telling me I was “lucky” to get them.  How can an oxygen provider think it acceptable that a person entirely dependent on oxygen 24 hours a day is told it’s “lucky” for him that the company can provide it?  It’s unbelievable.

Further to that, when he told me he’d not be able to come that day, he committed himself to coming to do the job first thing in the morning.  However, when he arrived at the flat to drop off the cylinders, I said I’d look forward to seeing him in the morning and his eyes went blank and he clearly hadn’t remembered his “promise”.

In fact, he arrive at nearly 3pm the following day.  I’d gone off to Oxford for my check-up and my brother, who should have been making his way back to work in Canterbury, had stayed in my flat waiting for him.

On the whole, then, not a great start to my experiences with Allied.  I’d heard murmurings from other users that there had been problems, but hadn’t expected to discover them so quickly, nor to such an extent.

Apparently, they’re chronically short of portable oxygen cylinders.  Between the collective brains of myself and a few friends in similar positions to myself, we can’t for the life of us work out why this is suddenly the case.  Having taken over the entire oxygen provision operation, why is the service so chronically short of portable cylinders, when previously there was no problem at all getting hold of them under the old, GP-prescribed system?

Today, things have taken another turn, and stoked my ire yet further.

I spoke to Allied yesterday, explaining that I’d been forced into a move to my parents’ house and that I was now out of portables and had no back-up cylinder here.  I did manage to bring over my concentrator, but it’s not set up for use in multiple rooms here, which means that rather than being the hub of the O2 system as it is at home, it’s now in effect merely a static, bottom-less cylinder.

They told me that because of the change of address I’d have to submit a whole new load of oxygen request paperwork from my GP before they could process an order, as they couldn’t do anything without it.  Luckily, my GP practice is outstanding, and got straight on to it, dealing with them direct and putting in an urgent request to have the oxygen delivered that day.

I received a call from Allied in the afternoon, telling me that they wouldn’t be able to do the delivery today (yesterday), but that they could set it up for tomorrow (today).  I explained that as I was now out of portables, it would need to be in the morning if it was being delayed.  She assured me that she would put me down for an a.m. delivery.

Imagine my surprise (or sad lack of it, so cynical have I become in such a short space of time) then, when today saw no hint of an engineer’s call all morning and still none by 2pm this afternoon.

I phoned Allied.  It looks like the order had been booked on their system for next week, would that be OK?  I took a breath and calmly explained that no, that’s not really OK and today is what they’d agreed and today is what I expected.

She checked the order and told me that I could probably get the back up cylinders (that’s the large ones that sit in a corner or cupboard and are hard to move around) today, but that portable ones were unlikely.

I explained, as patiently and calmly as I could, that this meant I would be unable to leave the house until their next delivery.  She said she understood and she apologised.

Frankly, I think that it’s only my high levels of tiredness and low levels of energy that stopped me shouting down the phone this time, which is good because I don’t like to shout at people on the phone. 

I know it’s not their fault and they’re just doing their jobs from a call centre somewhere in Surrey.  But it’s hard not to be riled when someone behind a computer screen is telling you that you’re not going to be allowed to go out this weekend because they screwed up their bookings and now couldn’t supply your needs.

Even more surprisingly, they don’t deliver on weekends, so there’s not even any hope of getting anything tomorrow. 

To her credit, the lovely-sounding girl on the phone went away and spoke to the engineer working in my area today and chased up whether he had any spare portables “on board” which he could drop with me when he dropped the back-up off.  In fact, he does and I’ve now been assured he will.

But that just underlines the ludicrous nature of the service and the system they have in place.  Clearly, they have no way of telling what oxygen is where, they have no tracking system of cylinders, both full and empty.  The whole service is shoddy and I have no idea how they propose to rectify the situation, but something really needs to be done, and soon.

It seems hugely ironic that the day after I write an article for the Guardian preaching about making the most of the time I’ve got left, that I find myself house-bound at the whim and the mercy of an oxygen delivery system that doesn’t appear to know it’s portable from it’s concentrator.  To put it nicely.

I wait – not with baited breath, because that would be too much effort – to see what becomes of this afternoon’s assured delivery, and wonder how on earth I’m going to meet my increasing demand for oxygen as my chest improves on the new antibiotics and steroids and I want to get out and about more and more.

PS – as promised, following yesterday’s excitement, my article has been published on the Guardian website here, and the Independent interview is available here.

 UPDATED 01/12/06 19:00:

What a fuss over nothing.

The muppets in front of the computer screen may have been able to cock up the proverbial piss up in a drink manufacturing plant, but the engineer couldn’t have been nicer or more helpful.

We weren’t given an arrival time, and were getting somewhat anxious as 5 o’clock rolled around, thinking that they usually finish on office hours.  A swift phone call to Central again reveal he was on call all night, thought and that he would definitely be coming along tonight.

Just before 7 he called looking for directions from the top of the road (no one can ever find my ‘rents’ house) and walked in with one half-size back-up cylinder (half-size being slightly misleading considering it’s actually about 3 foot tall and REALLY heavy) and two of the nice little white portable cylinders (the ones that are actually light enough for me to carry).

When he asked if there was anything else he could do, I chanced my arm and volleyed for some more portables.  He said he wasn’t sure how many of the white ones he had, but he definitely had a load of the little black ones (the portable, but slightly heavier ones).  He toddled back to his van and returned with 2 more white ones and 2 black ones.

I also explained how it would be good to have a back-up cylinder upstairs as well as down, if that was possible, and he immediately went back out to the van to get me another one.

So after all the huffing and puffing of the last 24 hours with Allied at their call centre, I’ve ended up with exactly what I asked for – 2 back-up cylinders and 6 portables to replace my spent ones, all delivered to my new address.

But why did we have to go on the merry-go-round of phone calls we’ve exchanged since yesterday, where they’ve told me this isn’t possible, that’s not possible, I can’t have anything till next week, I an only have one back-up, I can’t have portables.  It seems like a chronic failure in communication across the board.

The engineer was so nice and friendly and completely accomodating – nothing was too difficult, he never once made a face like it might be hard to do something.  He brought everything in, sorted it out and helped with everything I needed.

Why oh why do Allied make it so tough on themselves and so stressful for the patients?

Quite before the media maelstrom that’s been hurtling around today, I spent almost all of yesterday feeling absolutely awful.  It’s remarkable when I look back with all the things I’ve done today that I wouldn’t have been able to even touch on today. 

In all since 7am this morning, I’ve done 3 phone interviews, 1 studio interview, 1 photoshoot and written a 700-word article for the Guardian website.  This time yesterday I was sat on a ward in Oxford hoping to goodness that the docs weren’t going to put their foot down and keep me in.

Yesterday morning I woke up with the worst headache I’ve yet experienced, all thanks to the veto-ing of my NIV due to the pneumo scare.  Not only that, but the CO2 levels in my blood had obviously started to cause havoc elsewhere and I found myself lent over a toilet bowl 5 minutes after waking up depositing whatever was left in my stomach from last night.

I haven’t been sick in a very long time, and I’d forgotten how unpleasant it was.  not only that, but without oxygen on, it left me gasping for air. 

I manged to find my way back to bed and do my IVs, which took a lot more effort than usual, and got pain killers down me with a banana to try to settle my stomach and help them absorb better. 

We had to leave the house by 9.30, so I forced myself up and out of bed, but my head was swimming.  Of all the things I’d meant to do before heading out, I accomplished at most 2 of them, and then only half-heartedly.

At Oxford, I had a session with my physio which saw me bringing up some of the nastiest stuff I’ve seen come out of me for a while.  Not only that, but my headache was refusing to go away and my exhaustion was creeping up fast.

The docs came round after my physio session and we discussed the pneumo/chest pain.  Considering I had a good night’s sleep (barring the morning doldrums), and the pain seems to have gone away in my chest, it would appear that it wasn’t a pneumo after all, just me jumping to not-entirely-illogical conclusions on feeling more acute than usual pleuritic pains in my shoulder.

We decided that the IVs clearly hadn’t done the job they were meant to, and so I’ve been put on an additional drug to marry with my Colistin, Meropenem.  Usually, Mero causes me severe joint pain, but we discovered last time I took it that combining it with steroids was usually effective in taking that element away. 

The only draw-back being once steroid leves go over 10mg (I’m now on 20mg) transplant becomes less likely, for various medical reasons too detailed to go into here.  But it’s only for two weeks and it’ll hopefully improve my lung function and exercise tolerance, so it’s got to be worth it.

Eventually, after a supervised first dose to make sure I wasn’t going to have a massively adverse reaction to the Mero, I got away from Oxford (chauffeured by Dad) just after 2pm, getting back home around 3.30pm in time for some shut eye before heading out again to stock up on portable oxygen cylinders from my stash at the flat.

After a “who’s got the keys” palaver of indeterminate length, we eventually got back in around 7 pm and I was shattered, completely exhausted and good only for sitting on the sofa and wiping out.

Although I did get a bit of a second wind in the evening, around the time Em phoned me to talk about the news and the reactions on the message boards, I was still in bed as early as I could be.

The most important part of my day, though, was in the change of stance on Neve, now that the pneumo had been discounted.  Going to sleep with her on, I drifted off into the land of slumber and only woke on a couple of occasions before my early-morning radio address.

It was remarkable and wonderful to wake bright and alert and with no discernible left-overs from a proper night’s sleep – no headache, no sickness, no nothing.

It’s paved the way for a wonderfully busy day, all of which has taken place within the confines of the house, with the exception of a quick trip up the road.  I’ll be back on here later, with a bit of luck, to outline where else you can see my distinguished self discussing life with CF and other interesting topics of the day…

Updated 01/12/06:

After a breathless day-and-a-bit of media storms, between myself and fellow CF Trust Ambassador Emily we have notched up 4 print articles, over half a dozen radio interviews and she bagged all the Telly attention (but then, she is prettier and much more of a draw than me…), not to mention the rest of the CF community’s coverage, which has included local news country-wide, This Morning, Newsround and forthcoming features in the Daily Mail other weekend magazines.

Articles featuring Em and/or I are available at the Guardian, Herald, Independent and Mirror and Emily also gets a mention on Nick Robinson’s blog on the BBC website.

Articles have also appeared in the Scotsman and Evening Times for our Scottish Brethren, thanks to work from Anders, a North-of-the-boarder friendly-type.

It’s certainly been an interesting last 12hours.

Following the announcement last night that Gordon Brown’s 4-month old son, Fraser, has been diagnosed with Cystic Fibrosis, I’ve already done three breakfast radio show interviews – 2 on the phone for BBC 3 Counties Radio in Luton (Beds/Herts) and BBC Radio Berkshire, and one in the studio for BBC 3 Counties Radio in Bucks, which happens to be just up the road from my Mum and Dad’s house where I’m holed up at the moment.

I first heard the news when Em phoned me last night and told me about it.  It must be horribly upsetting for the family, especially having it “outed” as it appears to have been by a Sun scoop.  But they seem to be dealing with it in the best possible way, staying upbeat and positive and looking towards the future with hope.

And there’s no reason for them not to.  With Fraser being diagnosed at birth and going straight onto a regime of necessary treatment, there’s no reason to think that he should be capable of having a really good stab at a normal life.  With the Gene Therapy trials just around the corner, babies being born with CF stand an infinitely better chance of leading a full and happy life than ever before.

Support for the Brown’s from the CF community has been over-whelming, with the message boards on the CF Trust inundated with parent’s and PWCF leaving messages.

I was woken this morning at 6.45am by a call on my mobile, which is always on because of the possibility of a transplant call, and a researcher from the BBC asking if I’d do a phoner for them at 7am.  Bizarrely, I agreed and while I was on the phone to the studio giving them my best “CF’s rubbish but the Brown’s needn’t be all blue” I had a beeping in my ear from the other branch of 3 counties and a voice-mail left to call them.

No sooner had I come off air from my first interview (where I’d actually managed to leave the presenter speechless – go me!) than I was arranging an 8am studio visit for the MK branch of the breakfast show, whilst getting a call off a producer with Berkshire who is engaged to the first researcher I’d spoken to who had obviously relayed my performance just minutes earlier.

60 seconds later I was doing my second phoner of the morning and within 5 minutes was back off the phone, lying in bed and drawing up my morning dose of IVs.  Having administered them, I got myself up out of bed and dressed as quickly as my puffy little lungs would allow and jumped in the car with mum to trundle up the road to the Bucks 3 Counties Studio, where Martin Coote does his breakfast show that I’ve visited twice before.

This time I dragged Mum in with me and she gave a great account from a parent’s perspective, before I filled Martin in on my current situation and even managed to get a plug for the Live Life Then Give Life campaign in, which was a bonus!

I was back home by 8.30am having pretty much not stopped since the first phone call this morning.  I’m now starting to feel the early morning slightly, so it’s off to the sofa for me and – maybe – a bit of extra shut eye.

I finally put my finger on what’s been bugging me about my chest over the last couple of weeks (apart from the obvious lack-of-performance, obviously).

It’s the illogicality. (Yes, I know that’s not technically a word, but it fits and it suits and you know what I mean.  Plus, I think it’s quite a good word, actually)

I like everything in my life (except my thought processes) nice and linear.  This progresses to that, which results in this.  Start-middle-end.  Nice, steady progression along a linear frame-work where cause-and-effect are easily identifiable.

What’s bothering me most about my chest at the moment is that it is entirely impossible to predict what’s it’s going to do from one moment to the next.  To say it’s changeable is to say that England’s chances of winning the ashes are a little bit on the low side, or that Andy Robinson is “quite” likely to lose his job; the biggest understatement since the brand manager for sliced bread muttered, “I think this could be quite big.”

If I could chart the course of a day and how my chest would be feeling at any given moment – breathless, free and easy, clogged, clear, painful – I think I could cope with the ups and downs better than I am at the moment.

But when I slide so seamlessly from fine-and-dandy to gasping-for-air within the space of 10 minutes having done nothing more than reach for a glass of water for the last hour, it passes all levels of expected fluctuation.

Of course, that’s not going to help things improve at all, but it’s nice to have at least identified part of the problem.

Today’s been pretty good, really.  I woke, as expected, with the most terrific headache first thing this morning, and it took a good hour of sitting doing nothing at all, plus copious quantities of water, tea and painkillers to rectify, but it did go away.

No sooner had I wrestled myself from my bed than we were joined by K’s tiny niece and nephew (aged 18 and 6 months respectively, give or take a few) who cheered the morning up as only lovely, smiling, happy, playful little children can.

A morning of playfulness resulted in an early afternoon of sleepfulness, followed by a later afternoon of not-entirely-awakefullness, and a visit of my CF nurse from Oxford.  That’s not to say playfulness = nurse visit, that bit was merely coincidental, but the rest of the day’s tiredness was precipitated by the morning’s exertions.  But you knew that.

I’m off to Oxford tomorrow morning to see my physio and check what my lung function’s like.  I’m due to finish IVs at the end of the week, but I’m not sure that that’s necessarily going to still be the plan as of tomorrow.  We’ll have to wait and see, but a further course of a week or two may well not be out of the question, seeing as I have yet to notice any kind of significant improvement in lung function, sats or exercise tolerance.

It may be that I’m now at a stage where increases are unlikely and it’s more of a preventative measure, so I may be hoping for a little much, but I’ll grill my team on it tomorrow and see what I should be aiming for.  I think goal-setting is going to be important in the big-picture recovery process from here, and I want to make sure that they are realistic.

Tonight calls for another night on the sofa in front of the telly, relaxing and letting my b body do as it pleases, marshaled by physio and nebulisers.  It’s undoubtedly going to be quite hard to take myself to bed tonight as it’s never easy to sleep knowing that when you wake up you’re going to feel 100 times worse than you do as you settle down, but maybe I can take some comfort in the fact that I at least know I’ll get some sleep.

Things have been steadily improving over my week out of hospital and after my insomniac murmurings last Friday, I was whisked to the Churchill for bloods to check the dosage of my current IV antibiotic regime. (The two things are, actually, unconnected, despite how I made them sound in that sentence…)

Just as I was leaving the flat, I got a call from my physio asking me to take mini-Neve in with me (mini-Neve being the smallest NIV I’ve been given, as compared to Neve and Fat Neve). It turns out that, as suspected, NHS employees have far too much time on their hands and often find themselves perusing the websites and weblogs of their patients.  And, I trust, are now in the process of calling I.T. Support because they’ve just spat coffee all over their keyboard.  Unless they’re at home. (Don’t worry, you can always blame Seb.)

But clearly, it’s all part of the ever-expanded and improved NHS service and I’m certainly not going to mutter anything in the way of discontent, because no sooner had I been leeched by the vampires in pathology, than I was on the old ward (now the Treatment Centre) being shown the ropes on my New Neve. 

New Neve (who will from now on simply go by Neve, because I’m a lazy git and typing New every time is far too annoying) is not as swish-looking or well-designed as the last one, and still stands with one foot somewhat in the analogue age, but appears to be much less inclined to a) stop breathing and b) stop breathing.  Both of which I see as positive factors conducive to good breathing overnight.

And what a God-send she is, too, sorting out my insomnia with a breath of humidified air, perfectly in sync with my own breathing and without even a hint of giving up the ghost halfway through the evening’s work.

Settled into my nice new overnight world with my nice, new overnight partner, the weekend passed in a wonderful haze of relaxation and sleep.

Which is clearly not enough excitement for my body.

At 5.30am this morning, with Neve being somewhat cranky (well, it is Monday morning), I wake up lying on my side in bed with a pain in my chest.

“Nuts,” I think to myself, “I must be sleeping on my port and making my shoulder ache.”  I readjust myself and rustle around a little.  The pain stays.  I realise I’m lying on my left side, the opposite to my port site, so the pain emanating from my right shoulder can’t be port-pressure related.

I roll over.  It gets worse.  I breath in deeply at the discomfort.  It gets worse.

My by now increasingly awake brain sets into motion and starts ticking off symptoms on it’s mental self-diagnosis list: stabbing pain in specific spot on chest: check; increases significantly on inspiration: check; spreads up into the neck and slightly down the arm on inspiration: check; lessens on exhalation/improves with shallow breathing: check.  Previous symptoms-compatibility: pneumothorax, to the letter.

A pneumothorax, for those of you out of the loop on medical jargon, apart from being very hard to spell (and stumps most spell-checkers) is a partial collapse of the lung.  I’ve had them before, four times as a matter of fact, although previously all on my left side, and they are usually identified by a “popping” sensation before the pain arrives, which I sadly appear to have slept through this time.

They can vary in severity, from minuscule to major, the very worse being only slightly less than an entire lung-collapse. 

Luckily for me, mine have never (and wasn’t this morning), been bad enough to warrant any kind of emergency treatment.  Frequently, the only course of action for pneumothorases (check the correct plural usage!) is to insert a chest drain, a process which I’m assure is as painful and uncomfortable – not to mention as inconvenient – as it sounds.

Sticking to my propensity for drama without the critical edge, my lung has behaved itself in not deflating any more.  It has, rather mischievously, managed to detach itself ever so slightly from my chest wall right around the point where my port is located, which means it’s pretty much impossible to spot on an X-ray, although I know for certain it’s there.

So the recovery and adaptation process is thrown into turmoil once again.  Having spoken to my wonderful Doc at Oxford, I have managed to avoid immediate admission, but I’ve had to retire to Mum and Dad’s to recuperate as with the combination of pain and decreased tolerance to any kind of movement, I’m going to need more babying than K can afford me at the flat right now.

It’s a massive blow, if I’m honest, as the last week or so has caused a rather marked sensation of losing my independence and to now be taking a further step back to living at home with the ‘rents is a bit like having your face rubbed in it.

That’s not to say anything against my parents, and indeed there’s nowhere right now I’d rather be, because it’s intensely relaxing and easy to cope with, knowing that I can get whatever I want just by asking and I don’t have to worry about doing anything for myself.  But in the grand scheme of things, it feels like another step backwards.

I’m aware of just how bizarrely those last two paragraphs read: at once mourning the loss of my independence and celebrating being back at Mum and Dad’s and the security and reassurance it brings, but that’s kind of the place I’m in mentally at the moment.  Everything situation has 2 sides to it and I seem to be constantly experiencing both of them at once.

Right now, the painkillers are working and I’ve had a rest and a sleep this afternoon, things are looking OK and I know I just need a few days of rest and I’ll be good – or improving at least – but I also know that tonight, when I wake in the middle of the night with chest pains, and quite possibly with a headache since using Neve is out of the question with a pneumo (the pressure being too much risk of causing a much bigger collapse), I will struggle to see the positives here.

All I can hope is that if I fail to get back to sleep, I can come down here and log on to this blog and remind myself of the positives – that they are there and they will be tomorrow and that improvement is just a matter of small steps taken one at a time.  Sometimes they go a little the wrong way, but I know if I wait long enough to recover between mis-steps I’ll end up striding forward again.

A week has passed since I ejected myself from Geoffrey Harris Ward in the Churchill in Oxford and my adaptation process has continued apace, not with 100% reliable or positive results.

I have to confess for all my jaunty little exploits that have made it up on to here, there have been a number of far less jaunty moments, and some which have had me fairly close to tears.

The interesting thing is the pattern into which life has settled over the past 7-10 days since I got back home again.  Oddly, although every day has been different, they all seem to have followed the same arc from morning to night.

First thing in the morning, once sleepiness has subsided and the world is in focus, I feel positive and upbeat and keen for the day ahead.  I wrap my head around the things I want to do for the day and assess what my energy levels are like and what I think I can realistically get through.  Then, after 2 different nebs, a physio session, some breakfast and a shower, I set about whatever it is within the confines of the flat that I’ve set myself to do.

By the early afternoon, it’s time for a recap on the benefits of sleep, and I get my head down for an hour or so, before stirring to do my IVs.  For a patch of about and hour or two after I wake, I’m recovered enough to pursue things I want to do before the early evening, when tiredness boardering on exhaustion begins to settle in and things become a bit more of a battle.

My chest will start to moan and complain about the strain of, you know, breathing for an entire 12 hours without any supplementary support from Neve (as I’ve Christened my NIV machine, thanks to K’s thinking and Em’s bright idea of making things less scary through anthropomorphism). 

 Joining in the fun, my stomach will announce it’s desire to be sated with a sacrifice like some built-in God of Food who will readily close up and not accept offerings should they not be timed appropriately according to it’s very own desire.

As my body protests, so my mind – and my mood – takes a dive.  The tiredness takes over my faculties for divining the logical and illogical in the world around me, the easy questions of everyday life become heart-wrenching, brain-busting trials of wit whereby turning over to Channel 4 can be the sum of a good 15 minutes worth of hard cogitation coupled with inner debate about the relative merits of watching Nothing Very Much on either this channel or that and wouldn’t-it-be-good-if-we-had-Sky thinking.

The spiral continues into the night and I’m plagued mostly  by the fact that I have to stay up until at least 10pm in order to administer my nightly third dose of IVs before I can retire to bed and the warm comforts of Neve.

(If anyone ever here’s me suggest that an NIV machine is either a) warm or b) comfortable or c) in any way vaguely pleasurable, I suspect it has become time to skip the medication and proceed straigh to a padded cell.)

The night’s are the hardest, as my protesting lungs (even after a second, or third, physio session of the day) do everything they can to make getting undressed and ready for bed the biggest chore of the day.  Breathlessness results from the most minor activity and washing my face and brushing my teeth become the greatest amount of exercise I’ve achieved all day.

And as I settle into bed, I have a tendency in my semi-conscious stupor, to dwell on the things my life has lost in the last few weeks and months.

Even now, sitting writing this, I can see how the spiral starts and escalates, I can pinpoint the moments when everything starts to move in the wrong direction and I can see how my thinking patterns work against me almost constantly.

It may, to some, seem as if I’m outlining “a day in the life” for a sympathy vote, or in order to make people reading this understand what I “go through” every day.  That is not my intention. 

What I’ve found with everything else so far in this chronicle of mine is that by writing it down and reading it back, in a public domain where there is no where to hide, I can force myself into examining my thoughts, feelings and actions in a way I never would in my own head.

By illustrating my point as if to someone who knows me not at all, I simultaneously force myself to see things from a different perspective, to get out of my own well of self-pity and understand what’s behind the changes in mood and strategic thinking.

Smile Through It, that’s what it’s all about – and if you know what it is that makes you stop smiling, you can keep your eye out for it and keep it at bay.

I thought I had it all figured out. I thought I had it licked. I’d crested the hill of negative thought and was rolling hurriedly down the other side with a devil-may-care glint in my eye and a skip in my oxygen-enhanced step.

But as if to remind me that roller-coasters have downs as well as ups (are we all enjoying the mash-up of metaphors today?), life turns around and bites me on bee-hind like a snake interrupted in the middle of dinner. A really nasty snake that bites really badly and hurts a lot. Like a cobra. Not an adder.

Last night I toppled over into full-on insomniac territory. I managed a grand total of 90 minutes sleep, and for the pedants among you, it was from 5.30am-6.30am and from 6.45am-7.15am. I also managed a brief nap between 8.15am and 8.45am, which I don’t count as sleep as technically I’d already got up in the morning to do my drugs. Even counting the nap, that’s still a whopping 2 hours of sleep.

There are few things worse than lying in bed, waiting for sleep to envelope you, only to find that the Sandman appears to have left you off his rounds for the night, or made his house-call while you were in the bathroom brushing your teeth.

I would have been tossing and turning all night, had my NIV not insisted it was only going to work when I lay on my left side. That may have been a blessing, mind, because if I’d have been lying on my right hand side I’d have spent the night staring at K sleeping soundly all night next to me, which is bound to wind one up a little…

Today, then, has not really followed the pattern of yesterday, nor managed to continue the wave of optimistic advancement. It has passed, and is indeed still passing, in a fog, a mist, a veil of heavy-eyed melancholy as my mind has struggled to make sense of the simplest little thing going on in the world.

It took me so long to respond to K this morning that you’d have sworn her enquiry was more closely related to the implications of Chaos Theory when applied to Newton’s First Law rather than the desirability of a high-temperature, caffeine-enhanced morning beverage. In fact, I’mnot entirely certain I actually gave her an answer, but I got a cup of tea all the same.

I think it’s fair to say that nothing productive has come from my day so far today. I managed to get to Oxford to have my levels checked for my IV’s, and I managed (just about) to absorb the necessary information from my physio to operate my new NIV machine that they’ve given me, but beyond that, very little as actively passed through my brain and come out again in any semblance of comprehensible fashion.

I’m perfectly expecting to wake up tomorrow morning (oh to wake up – what a joy it would be, to be so far asleep as to be able to define oneself as actually waking up!) and read this back to myself and discover nothing more than a thrice-too-long stream of consciousness resembling more closely a collection of randomly-arranged letters than an essay understandable to students and natives of the English tongue.

If you’ve made it this far down today’s entry, I commend you. Personally, I think I’d have given up after paragraph 2, but I suppose there is something of the car crash in the nature of it that may have been appealing enough to endure an extra few mintues’ worth of reading to see if I may actually have lost the plot completely, or merely temporarily misplaced it.

Perhaps, after a night’s rest and – dare I say it – sleep, I will be able to look back on today and pick out the moments of levity that helped me through, but right now, I’m nodding off to daydreams of a bed made of such softness that its entirely possible to lose an entire person into the mattress without the merest hint showing to the outside world.

So long, farewell, auf wiedersehen, goodnight.

Last night was a toughy. Having just about managed to get myself off to bed without succumbing to narcoleptic attacks in the hallway between bathroom and bedroom after staying awake until nearly 11pm for my IV’s to finish, my NIV started playing up and cutting out on me while I was dozing off to sleep.

NIV essentially works by blowing air into your lungs and helping to suck it back out again,”assisting” your breathing muscles and respiratory system and ensuring a better flow of air – oxygen in and carbon dioxide out – through the night, thus avoiding CO2 build-up and the morning headaches I’d been suffering from for some weeks previously.

NIV is delivered through an almost air-tight mask strapped to your face, which ensures a seal around your nose and lips to make sure that the appropriate amounts of air are being supplied at the right time, with just a small exhaust port to make sure that you’re not re-breathing your own expelled CO2.

When the machine starts cutting out, you find yourself strapped into an air-less chamber which is not only no longer helping you breath, it’s now positively hindering you. Thus, when you’re nodding off to sleep, the odd sensation of forced breathing is replaced by a sudden lack of air and O2, and ever alert to the change, your body wakes you up again.

After drifting off and waking up three times in the first hour of “sleep” last night, I finally threw in the towel and took the mask off. The question now was what to do for the rest of the night. It was now 1am and I had to be up at 7am to do my morning dose of drugs.

I knew if I slept without oxygen, I would hardly sleep at all as my body won’t let me fall into a relaxed, shallow-breathing state of deep sleep since my oxygen levels then drop dangerously low. But with oxygen on, my CO2 retention sky rockets and by morning my body is slowly starting to poison itself and I wake with an almighty headache.

I think in polite circles they call it Hobson’s choice.

I got up and out of bed and sat myself on the sofa, nasal specs on, trying to decide my best cause of action. By 2am, my eyes couldn’t pretend to be awake any longer and I had to take myself back to bed, where I gave in and popped on my specs and tried to get comfy.

Having not tried “normal” (ie – unaided) sleep for weeks, I was surprised to find that my body didn’t take kindly a lying down and insisted on a more propped position than I had been used to with the NIV working. Eventually, after much tossing, turning and gasping for air at occasional moments, I managed to drift off. Surprisingly, I slept fairly continuously until my alarm woke me.

As I’d suspected, my headache attacked. On the plus side, I wasn’t as immobilised as I often can be by it, but it’s still not a pleasant sensation to wake up to. I did my drugs and took myself back off to bed, where I reattached my NIV and tried, fairly successfully, to sleep again.

Finally waking at 11am, I was dismayed to find that far from blowing off the CO2 from my system, the NIV appeared to have simply maintained the same levels and left my headache in situ – not part of the plan. But having got up out of bed and taken some painkillers, things soon righted themselves.

Once the headache had passed, I was delighted to find that I actually felt pretty well-rested and not near as shattered as I’d expected to be after such a late night and rough sleep. I set about sorting through the mass of disorganised paper-work in our new study and catching up with all the bills and demands that had been made of me since before I went into the Churchill some 3 weeks ago.

In fact, after a bad start, today has been remarkably productive. Not only have I caught up on a lot of stuff, I’ve also proved to myself my capacity for work and concentration now I’ve somewhere to shut myself away when I need it. Prevarication is going to get harder and harder now I’m making more and more steps in the right direction and continually proving my abilities and boundaries to myself.

A mate of mine, S, who had been instrumental in helping K make-over the study – taking things apart, building things, moving things, juggling things, drinking tea – popped round after work today, which was cool as I hadn’t seen him since I broke out. Even better, he came bearing a gift which blew me away.

Everywhere my bro travels (and he travels a LOT) he always brings me back a piece of artwork, however large or small, so that I can at least taste a morsel of the culture he’s explored. Over the years, I’ve collected up pieces from Australia, New Zealand, Tonga, Malawi, Egypt, Brazil, America, Italy and others. Last Christmas he bought me a panoramic photograph picture of Rio de Janeiro from his visit there. S has always been a big fan of the pic, but until now it’s sat rolled up on a shelf in my room, looking for a place to live.

Seeing a vast expanse of wall open up above the desk in the study as they assembled it, S took it upon himself to liberate the pic from my stuff and take it off to get it framed. He brough it back today looking nothing short of majestic and I can’t wait to get it up on my wall over the desk. I must confess, though, I am slightly concerned about losing myself in it every time my eye wanders from my keyboard.

The day improved so greatly as it went on that I don’t want to sully it with the Great Allied Respiratory Saga, but rest assured that this will not be the last you hear of it. The new home oxygen service has come in for a substantial amount of criticism in the past few months since its inception, and today I found out why.

My own personal story from today will grace this site in the next couple of days, but if you’re wanting to get a jump-start on the issues, why not check out Oxywalk – a new site dedicated to exposing the problems with the service.

For now, I’m going to quit while I’m ahead and remember that the qualities that make a day good or bad come merely from what you choose to highlight in your day.

A good friend of mine has recently been seeing a psychologist to help them through a particularly tough time in their lives and we were chatting about it a little while ago. They told me something their Crazy Doc had told them about managing negativity which has really stuck with me.

Negative thinking is like standing at a train station. When something happens to provoke “bad” thoughts, a train pulls into the station intent on taking you off on a journey through all your worst fears and insecurities, dragging up all the things which will drag you down and leading you on a sombre dance of distress.

But if you learn to recognise the triggers, you can provide a platform announcer in your head who can flag up the destination of the train pulling in and you can choose to stay on the platform. You can elect not to take the train to the dark place, but instead to board the daylight express to the end of the tunnel. You just have to be able to recognise the moments when you need the announcer.

It’s all well and good noting wisdom and realising its benefits, it’s quite another to put it into practice in everyday life.

Which is why I’m so happy about my day today and the way I’ve managed to avoid getting on the wrong train and instead enjoyed my time at home and looked forward to other things later in the week.

K took my mum out for a girlie shopping trip this afternoon, nominally looking for Christmas presents, but largely to look at pretty things and coo. I stayed at home in the flat, mostly to sleep.

In days gone by recently, this would have upset me. Not because I yearned for the chance to run around town pointing at prettiness (I’m not that girlified…), nor because I had a desire to nick a melange of treats from the sweetie barrow, but simply because they were doing something that I felt I couldn’t do.

But I chose not to get on that train, to avoid the Sloppy Bollocks Express to Tear Town, and instead jump on the Chill Train to the City of Smiles. Rather than see the afternoon as a missed opportunity to go out, it was instead a perfect opportunity to sit back, relax and pop on a DVD that I love but rarely get the chance to enjoy. (That’s The West Wing, not anything best “enjoyed” alone, you dirty minded older-brother-types. Yes, I’m talking to the twins.)

I find myself at my computer this evening not sullenly relaying stories of my abandonment, but finding ways of communicating how far I feel I’ve come in the last 24 hours in breaking the back of my adaptation process.

Life’s all about the ups and the downs – riding the waves and hoping not to fall off. But you always know that even if you do, all you have to do is paddle back out and you’ll pick up another one soon enough.

I may not get back to the level I was at before this summer, I may have to make changes and adjustments, I may want to scream and shout and tear the place down, but I know that with the love and support of all those around me, I’ll keep on going.

Kipling once wrote, “If you can meet with Triumph and Disaster / And treat those two impostors just the same,” then, “Yours is the Earth and everything that’s in it, / And – which is more – you’ll be a Man, my son!”.

My Triumph is waiting for me in the wings, and Disaster may be in the way, but you know what? I can take it. Hurl whatever you want at me, World, because sooner or later I’m going to have new lungs and I’m going to hurl it straight back!