Archives: Annoyances

It’s been a bit of a gap again since I last posted – I seem to have lost my blogging momentum, although I have a feeling it’s because the evenings are much harder for me now than they were. I used to write my blog posts right before I went to bed at 10 or 11 at night, but now I’m usually struggling quite a bit with breathlessness by then and sitting at the computer is about the last thing I want to do with my bed calling me.

Still, I’m sure I’ll work myself back into a groove somewhere.

I had intended to sit here this morning and launch off into another rant about Allied Respiratory (yup, still rubbish) but I’m not sure I can summon the energy or the bile to do it proper justice. I’m doing so well at the moment in terms of energy levels, happiness and all-round doing-things-ness that it seems silly to waste any of it venting my fury at Allied. And it’s such a glorious sunny day outside that I don’t want to spoil it with grumpiness.

I will say, however, that yesterday I was not quite for circumspect or forgiving when they failed to turn up with my oxygen delivery for the 2nd working day in a row. Having expected it on Friday, only to have it moved to Monday (that’s a weekend with no spare O2) and then pushed back another 24-hours yesterday, I was seething. Particularly as no one from Allied deigned to call me to tell me.

The way they treat their patients/customers/fools is completely reprehensible. When I phoned to ask about my delivery at 3pm and asked if anyone had been likely to call me to tell me not to wait in for it, I got a nice, curt, “No, I don’t expect so, not at this time in the afternoon.” Cheers guys.

Do they honestly think that just because I’m transplant-listed and dependent on 24-hour oxygen I don’t have anything better to do with my time than wait around for cylinders of oxygen to let me leave my house? It’s pathetic.

Anyway, I took it upon myself to draft them a letter expressing my regretful displeasure at the standards of the service they were offering and I eagerly await their response. Not that I’m expecting them to do anything.

But I’m not going to let that dominate things today (well, not unless they fail to deliver this morning and mean that I have to scrabble to find K an alternative lift to her appointment in Northampton which I’d not have enough oxygen to run her to). Instead, I’m going to enjoy looking out at the sunshine and contemplating the next move in my rather unhurried life.

The last week or so has been quite nice, as I’ve had nothing really to do or to focus on, having not come to any conclusion as to what I’m tackling next. I’ve just knuckled down to finishing off the next CF Talk, but most of the copy for that should be done by the end of the week.

I know, though, that if I don’t pick myself a project soon, I’m going to drift off into a little no-man’s-land of indecision and boredom and get into a vicious circle of boredom/tiredness/negativity.

The best thing about the last couple of weeks has been finally working out the ins and outs of my body as it is at the moment and finding the balance between activity and rest – knowing what I can and can’t manage and how to deal with whatever exertion I do undertake without running myself into the ground. It’s been a much longer and trickier learning process that last time I was doing it back in December, but I finally feel like I’ve grasped it now. Famous last words, I know, so keep your fingers crossed.

Now I’m off to sit and watch the clock tick round till Allied turns up with today’s delivery.

I still can’t move, but on the plus side, we have nice new bookcases in our study, which means the floor no longer resembles a preparation area for Fahrenheit 451.

Ever since we created our new study out of K’s old bedroom in the flat, we’ve had a desk and filing cabinet, but no where near enough shelf space to collect together the frankly bonkers number of books we both own.

But now, thanks to a mercy visit by both sets of parents, we have two gloriously beaming new bookcases which not only hold all of our current collection, but also have enough room for us to “grow into” – for the next six months or so, at least…

I was entirely useless at helping put them up, though, as I’m still pretty much immobile with whatever this virus is I’ve picked up.  For variety, the pain today has focused itself mainly in my neck, making me unable to glance sideways at people in that wonderfully comical manor which I so enjoy.

Not only that, but it’s meant that every time someone sitting next to me asks me a question, I answer them with a half-hearted wince as I momentarily forget my aches and turn quickly to answer them, only to be reminded instantly that turning my head 90 degrees is exactly the one movement that I’m incapable of today.

Still, at least I’ve not lost my sense of humour. (At this point I’ll gladly thank my parents, K and her parents for not correcting me in a comment below).

Generally, today (and yesterday) have been pretty rubbish.  Not only have I been in near constant pain – or at least major discomfort – but I’ve also had to miss out on a really good friend’s birthday celebrations and also to sit idly by and not be able to help put together things to go in my own flat.  Not a highlight of my year so far, I have to say.

I’m trying incredibly hard, however, not to let it drag me down, although to be honest it’s starting to.  I’m not ill, so I can’t complain really, but I do’nt feel well enough to really “do” anything, which is unbelieveably frustrating.

It’s so hard to define what’s going on with my body, or my head, at the moment and it’s really rubbing me up the wrong way.  All I can hope is that another day or two of rest will be enough to drag me out of it and that as my physicality improves, so will my mood.

If not, heaven help poor K as she’s had to put up with enough of a mono-syllabic, sour-faced, misery-guts of a boyfriend for the best part of half a week now.  Please God I get better soon, for her sake if no one else’s.

There was me thinking I’d got thing under control after my weekend dip and I manage to get myself laid low with a virus.  Not a regular, all-singing, all-dancing kinda virus, mind, but a really pathetic, weedy one which is just enough to prevent me doing what I want to do without making me feel REALLY ill.

The last few days I’ve been struggling with a bit of low energy and this morning I woke up feeling very lethargic, but also with all sorts of aches and pains all over my body.  My lower back was hurting, and I felt like I’d pulled the muscles in my groin (which I think is pretty much impossible when you’re asleep).

Added to that, when I got up I had aches through my knee joints and around my shoulders and pains in my hands and fingers.  Chest-wise, I feel fine – no better or worse than usual, but I just can’t seem to do anything that involves moving without either wincing or nearly losing my balance.

After talking to a few people from the CF Trust message boards, it seems that it’s just a virus that’s going around, which should wear off in a few days with some decent rest, but it’s no less annoying for it.  The best news, really, is that it doesn’t seem to have done any harm to anyone’s chest, or caused infections or anything, which is a definite plus.

So it’s a few days in bed/on the sofa for me, which I’m going to find exceedingly annoy because – as you’ll have seen from my last post – I’ve got a whole load of things that I really want to be getting on with.

Ah well, the sensible, mature me will have to take charge and remind myself that having projects is all well and good but if I don’t keep myself well enough to enjoy them, what’s the point?

Send me get-well vibes!

Sometimes people really make life hard for themselves – and they don’t seem to realise how much they’re contributing to it themselves.

It struck me watching the BBC’s new Fame Academy thing for Comic Relief first off. Every night they all step up into the “circle of fear” to perform slightly out-of-tune, glorified karioke versions of wel-known songs to varying degrees of success (and even I’ll admit that Ray Stubbs had me smiling tonight with his version of “Lola”). But what kind of a mind-set does it get you in to call your performance space the “circle of fear”?

If you want to ward off your nerves and give of your best, you need to be feeling positive and confident when you step up to the mic. Telling yourself you’re stepping into the worst 12 feet of space in a building is hardly gearing yourself up for success, is it?

But that’s not the thing that’s lead me to this. What’s bothered me tonight is reading another blog of a lady who says she’s “not coping” with all the things in her life.

She lists all the many things going wrong with her – some unavoidable, some unbelievably sad and some which, to me, are a matter of pure perspective.

Some people – and this isn’t aimed merely in one direction – don’t seem to know how to let things go. They like to wallow in their failures, their mistakes, their foibles and to make sure everyone else knows how much they are suffering.

You know what? We all are. We all have our own daemons, our own battles to fight, our own mountains to climb. Bad things happen – that’s a part of life.

But the measure of a man – or a woman, or a child – is whether he can take the knocks on the chin and get right back up, look life in the eye and say, “Is that all you’ve got for me?” It’s not easy, but neither is it meant to be – nor should it be. Where is the joy in victory if you’ve not had to fight to get it?

Sometimes you fight and sometimes you lose, but there’s no good to come from dwelling on your losses. That’s not to say you can’t learn from them, but you’ve got to take your lesson and move right along. A rolling stone gathers no moss, it’s said, and why open yourself up to being over-taken by weeds when you can keep on moving and break free?

Blame is the hardest thing in the world to accept, yet some people choose to heap it on themselves. Why go through life carrying a burden that you’ve given yourself? Come on, life gives us enough to carry on our own, there’s no point adding to it. Blaming yourself for things you can’t change is a surefire way to get yourself into a vicious circle of personal degradation.

I don’t mean to sound like I’m belittling people’s problems, nor do I intend to suggest that I’m forever rosey and never have my dark days – anyone reading this blog over time will know how much I’ve struggled. I merely mean to suggest that sometimes, you need to offer yourself a fresh perpective on your situation – to look at it from a different angle and see if the insurmountable is actually just really f***ing hard.

“Fate doesn’t hang on a wrong or right choice,
Fortune depends on the tone of your voice.”

Have I mentioned in the last week or so how much IV’s annoy me? Methinks once or twice…

Yesterday was a really good day – I didn’t sleep very well, but I re-organised my drug schedule to get me out of bed at 8am instead of 6am, which meant I could get up and start my day immediately, rather than going back to bed after an hour when my drugs were done and sleeping till noon.

It also worked well because it let me take my catch-up sleep (that’s just me trying to avoid the wword “nap” really) straight after lunch, before my afternoon dose, rather than having to wait till after it and then sleeping too late into the afternoon, which in turn appeared to be disrupting my night-time sleep pattern.

Not only did it seem to work pretty well, the new schedule, but it also seemed to give me a lot more energy and get-up-and-go and as a result I had an enormously productive day, leathering through work on the new CF Talk, Laughter for Life and the Activ8 Show, all of which had been somewhat neglected over the previous week.

Having gone to bed tired and ready to sleep after my late dose last night, I was eagerly anticipating a good night’s sleep (which I got – YAY!) and another energy-filled, super-productive day. I was even starting to plan my to-do list for the day as I drifted off.

But high doses of wapping strength drugs will go and do odd things to your system. After a great night’s rest, I woke up not full of the bouncing, work-attacking energy with which I’d gone through Thursday, but with the apparent wakefulness of your average 3-toed Sloth, which saw me lumped on the sofa most of the morning working out how much of the to-do’s could be un-done for the day.

After lunch, I slept, again anticipating a post-snooze pick-up to revamp my day, but again seemed only to wake more tired than I had been when I went to sleep. Worse than that, though, was the fact that my brain saw fit to simply shut down and not operate for the rest of the day until about 9pm this evening.

I’ve thus spent almost all of the day/afternoon in a semi-comatose state on the sofa wondering where on earth all the energy and pizazz I discovered yesterday had gone.

It would appear that I’m back in the old give-and-take world of IV’s and energy which had me so frustrated in the run up to Christmas. As much as I want to be pushing myself forward and keeping ploughing on, I keep having to give in to my body and accept defeat on a day’s work.

If there were just some kind of indicator as to whether tomorrow was going to be better or worse, I think I could cope with it easier – it’s the apparent lottery of energy levels that’s really riling me at the moment.

I suppose I just have to look at it from the point of view that it makes each day more interesting and exciting because I never know what’s going to get thrown at me: perhaps there’ll be something new to spur me on tomorrow, or maybe I’ll be finding new depths of reserves to drag myself through the day. Who knows? Isn’t it fun?!

Today has been a really hard day.  Despite being exhausted by the day’s activities yesterday – heading down to London and back, with an hour and a half’s meeting in the middle – I slept terribly, hardly managing longer than an hour asleep at a time, and waking up this morning feeling totally drained.

I knew that the meeting was likely to take a chunk out of me, and need me with a need to recouperate, but I wasn’t expecting to be bed-bound for three-quarters of the day.

Even now, sitting in the study writing this I know I’m not right – my brain isn’t really turned on and my chest is protesting.  I need to do some physio, which may help the chest, but I don’t know what I’m going to do about my brain.  I’m just waiting for my neb to work before getting some physio done.

I’m supposed to be going in to work tonight and I desperately don’t want to miss another week, not with the show starting to loom and only 2 weeks till half term.  I’m having all sorts of horrible thoughts of missing out on the whole term again and not being able to do anything for the show, not to mention landing Suze in the proverbial by missing sessions at such short notice that she doesn’t have time to geet cover or re-plan.

It’s just not fun – my body is rebelling and my mind wants to go with it and I’m fighting tooth and nail not to let either of them win.  And yet, I’m stuck on that see-saw between doing what I want to do and making my chest worse – there’s no telling whether it will or not.

The smart part of my brain is telling me not to go into work tonight and to stay home, stay in bed and get some rest, but the fragile part of my brain is telling me that I need to get up and out of the house to avoid getting chronically cross with myself and my chest for not supporting me in the things I want to do.

I don’t want to be here now – I don’t like being back in this place where everything I do has to involve a sacrifice somewhere else.  I want to be able to book myself to do something on two consecutive days and not feel like a slave to the whims of my lungs.

I know I have to accept that that’s exactly what I am now, and that I have to learn to work with them as much as I can for the time being until I get a shiny nw set which will let me do what I want when I want.  There’s really no point in me sitting here harping on about how poor old me can’t do what  I want to do and isn’t life unfair, because it’s not like I didn’t know that already.

Pull yourself together, get a grip on the realities of your situation and stop letting little things rock your boat.  Focus on the good things, do what you can manage to do and forget about the rest of it – there’s no point pining for something you can’t do, you might as well make the best of what you can do.

Festive recovery is progressing well – I’ve had two complete days of doing very little-to-nothing and looking after myself and I’m feeling all the better for it.

I’ve got a voucher-splashing trip to Borders planned for the morning, under the guise of taking my Dad over to show him how fab it is, and I’ll be merrily spending my way through the delightful vouchers supplied by K’s big bro and troupe. (Happy now?;-).

I’m still not entirely firing on all cylinders, but I’m finding it much easier to get around at the moment – albeit always tied to an oxygen cylinder or concentrator – and I’m not nearly as breathless as I was yesterday or the day before, which goes to prove two things. 1) that doing plenty of physio and getting plenty of rest really works and 2) TOBI, the nebulised form of the Tobramycin anit-biotic, really does do it’s job spectacuarly well, as I only restarted it on Boxing day (it works on a month-on, month-off basis).

Also had an interesting conversation with O2 yesterday.  I’ve been thinking a lot about getting hold of a Blackberry phone/email device thingy, mostly because it’s a fair assumption that this year I’ll be spending a good deal more time in hospital and that being the case, it would be great to have access to my emails from my bed.  The hospital as it is doesn’t have workable or affordable internet access, so a Blackberry seems ideal.

What it would mean is that while I’m laid up with nothing much to do, not only can I carry on communicating with my friends without running up an insanely huge text message bill, but I can also carry on with most of the work I do for the Trust, which is handled largely through email with contributors, designers and the “bosses” there.

Now, I’ve seen a few really attractive deals on O2 for Blackberry Pearl phones and contracts to go with them, namely one which tell me that if you sign up to a £30+p/m voice contract and £10p/m Blackberry Tariff, you get the Pearl for free.

So I phoned and spoke to O2 customer services and told them that although I’m only 9 months into my current contract, I’d like to add the Blackberry Tariff and get the Pearl.  Fine, they said, that’ll be £220. 

Now, bearing in mind that the phone alone is advertised in Carphone Warehouse at the moment for £199, this didn’t seem like a fabulous offer.  I told them so.  They told me that since I’m not due an upgrade, there’s nothing they can do. 

I outlined my history with the company – loyal customer for over three years, no problems or complaints, no other issues – and suggested that perhaps, since I’m only 3 months away from the end of the contract, maybe they could budge a little on the price of the phone.  I didn’t say I wanted it free, just a little leeway on the £220.  But no, they don’t do it and no one there is authorised to.

So I thanked them politely and hung up, redialed and went through to the option on their phone menu saying “If you are less than happy”.  I outlined the situation again and got the same response – nothing they could do because I was outside the upgrade window.

At this point, having reiterated the fact that I’d been loyal for 4 years, never missed a payment, never raised a problem with them, never kicked up a fuss about anything, I let them know I was feeling like a mildly undervalued customer.

In fact, it had occurred to me whilst talking to them that it would be cheaper for me to go down to Carphone Warehouse, take out a new contract – on exactly the same terms as my current one – plus the Blackberry tariff, get the phone for free and pay out the remainder of my contract with them than it would be for me to get the Pearl through them.  I told them.

At this point he put me on hold and came back 5 minutes later telling me that having spoken to 2 different departments, the 2nd one told him that if I called them back on the 4th January, they would do the upgrade for me.  Just like that.

Interestingly, when I asked what department I needed to speak to when I called back, he told me it was the “Safe” department – the people you talk to when you say you want to cancel your contract.  So being a “valued” customer isn’t enough to get you benefits and deals as part of O2 – you really only matter when they think you’re going to defect to Vodafone or Orange.

Still, who am I to grumble, as of January I’ll be my own personal walking office – marvellous!

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?