Monthly Archives: July 2007

You know that noise you make when a sigh turns into something slightly more expressive, your lips vibrate and it comes out a little like a horse sneezing when you feed it?  I just did that and got spit on my keyboard.  That’s pretty much the day I’ve had today.

Some days you wake up and you just know it was a bad idea to even think about having a day today.  Much better to just curl in a ball on the bed and forget about life for the next 24 hours until it’s the next day on the calendar and you can expansively cross it off with an enormous flourish.  That was my day today.

Some days, no matter how little you do, how hard you try, how many physio sessions and nebulisers you do, how much resting and relaxing you do, your chest still won’t listen and insists on reacting as if you’ve just come running full pelt down the Mall at a sprint after the other 26.1 miles of the streets of London at a similar pace.  That’s been my day today.

Luckily, the anger has subsided, replaced this morning by a heavily-weighted black cloud which hung around like flood waters in Gloucestershire and only shimmered to a dissipated mist in mid-afternoon when my big bro descended on the flat for coffee and a catch up.

Of course, it’s all relative, these mood swings, as it was partially my brother’s return to town that had brought on the down-turn in the first place.  Before you get the wrong idea, I love my brother very much and I love having him around.  It’s more the reminder of how far downhill I’ve come that bothers me.

It used to be that when my bro swung into town it was cause for a family night out – a nice restaurant, everyone else getting drunk, me as designated driver, a chance to catch up on gossip, share stories and take the mickey out of Mum for not making any sense.

But this time all the fun will be had without me, the stories shared around a 3-seater table instead of 4.  And it’s not that I begrudge them that, nor that I would want them to come over to mine and have a take-away or do something at Mum and Dad’s, because whatever it is, I know I’m not up to it.  That’s what really pulls.

Tonight the anger and frustration has ebbed away into a dull resignation.  There seems no other way of putting it than propping your head in your hands and sighing with that little bit extra expression where your lips vibrate and it comes out a little like a horse sneezing when you feed it.  If only I could spell it.

I’m sure I’ve said it on here before, but sometimes the on-going frustrations of life with little lung start to get to you.

The last few days have seen a small pattern forming of good mornings and a gradual downward slide during the afternoon, which is just about possible to cope with when you know what to expect. It’s the limitations of the downward turns that are starting to get to me.

Take this afternoon, for instance – by no means a stand-alone example and definitely something that’s struck me over the weekend, too – when K was feeling pretty rubbish.

Home from a day at work and having bathed to wash the day away, like many of us she just needed a little bit of TLC. TLC for K meaning Tea, Love and Chocolate.

Wanting to do what I could (not being content with only being able to offer one of three) I headed to the kitchen to brew up a cuppa and the five-minute rinsing/boiling/brewing marathon left me breathless and exhausted.

It was standing over two cups of half-made tea, leaning on the counter trying to get my breath back that things threatened to boil over – and by that point the kettle had been turned off.

It goes beyond what you’d call “frustration” – it’s so much more than that. I was overwhelmingly angry as I stood there feeling utterly useless and debilitated. The trouble was, I don’t really know what I was angry at. I’m not even sure there is a something to be angry at.

I was just angry. And as if to rub hard-crusted rock salt into the gaping jaws of a shimmering, seeping wound I couldn’t even summon up enough air in my lungs to scream in frustration.

It strikes me as the ultimate sort of irony that the next time I have enough energy and breathe to scream at how sh*tty it all is, I’ll be passed it and won’t need to scream.

But I can’t tell you how much I’m looking forward to whatever the first thing to really rile me post-transplant is, because boy is something going to get it full-blast.

So a word to the wise – be nice to me after my op, you never know when I’m gonna blow.

I’m not entirely sure what day it is today.  I’m fairly confident it’s Saturday because there’s more sport and less Richard and Judy on TV, but as far as I’m aware it could just as easily be Tuesday week.

I’ve suffered something of a lack of sleep over the last few days and my body clock is so far out of synch I could be in Australia.  All thanks to my third aborted transplant call.

Aborted call, false alarm, non-go-ahead shout, call it what you will, it was my third foray down to Harefield in the middle of the night to be pricked, plugged and prepped for an op that never came.

This one was, however, at least mildly entertainingly different, being as I was a “back-up” recipient for the first time in my 3 calls.  The previous two times it has happened, I’ve been right ready to receive the lungs when it was decided they were no good.  This time, I was second in line to someone waiting (at another hospital) for both heart and lungs, which obviously come best as a package.  Should there have been anything wrong with the heart or should there have been any reason the other recipient was unable to go ahead with the operation,  I would have received the lungs.

This meant a very different thought process for me from the last times I was on ward F East, nervously waiting to be told if they were good enough or not.  This time, I was convinced from the moment I spoke to the T-C, Julie, at just after 11pm that it would not be my night.  Which lead, inevitably, to a VERY boring 5 hour wait in a room on the ward to be told that I wouldn’t be heading to theatre.

The saving grace of the whole night was the comforting knowledge that the heart had been fine and the heart and lungs were being transplanted into the original recipient on the list.  Not only did it mean that at least someone’s life was being transformed in the early commuter hours of Friday morning, but that the organs of a lost loved one were being put to the greatest use possible and that perhaps in days or weeks to come their family may draw some comfort from that fact.

As it happened, all the whole experience meant for me was an entire night with no sleep whatsoever, which in turn lead to sleeping from 7.30am (when we finally arrived home in the morning on Friday) until 2pm and sitting through the rest of the eternally-dragging day feeling beyond terrible, hardly able to lift myself from the bed to drink some water, let alone contemplate eating or doing anything more energetic like watching TV.

It was pretty horrible, to be honest, and a mark of how much my body now struggles to cope with the unexpected.  Without a night’s sleep to rest up and repair some of the daily damage, my body was truly struggling to cope and wasn’t backward in coming forward about it – it was making more than sure I knew about it.

Things are better today, after a sensible night’s sleep, although the tiredness is still pervasive and I could do with a kip every half-hour.  I’m sure after another day in bed and another good night’s sleep I’ll be back where I was before.

And at least this time I managed a whole 6 hours at Harefield without mortally offending someone.

I like to think that I’m a nice guy – I’m friendly, jocular (wow – now that’s a pretentious sounding word when you put it down in black-and-white), fairly unimposing generally and keen to get on with people.  I’m also always keen to make a good impression when I meet people.

Imagine my dismay – nay, my horror – at putting my foot so spectacularly in mouth that I could almost taste my kneecaps.  Not only that, but doing it with one of the lovely, friendly, wonderful and caring transplant coordinators, in whose hands – more or less – my life may rest.

The coordinators at Harefield (there are 4 of them) have changed around over the last year or so, meaning that I’ve actually only met 2 of them in person.  I’ve spoken to all of them and know them to talk to, but it’s still very different meeting someone in person.

So it was a delight to meet one of the disembodied voices at the clinic I went to yesterday.  In fact, she even shared my sentiments, telling me, “It’s nice to put a face to a name – to finally get to meet the person you know down a phone line.”

How lovely.  Being the self-depreciating chap that I am, I countered with a swift, “I’m always a bit disappointing, though.”

Only I didn’t.  The first word didn’t actually appear to emerge from my mouth when it should have been the most prominent part of the sentence, leaving merely, “Always a bit disappointing.”

It was one of those wonderful moments when you realise you’ve sunk yourself so deep into a giant well of not-very-niceness, when your stomach lurches and your brain races to catch up to say something to hurriedly recover the situation, but all the while you just know that nothing you can say is going to make it sound any better.

I drifted off into a daze of internal arguments with myself of how best to back-track, while the vast majority of my head is telling me not to say anything more as I’d only get more and more David Brent with every passing word.

By this time, of course, I look like I’ve just hurled and insult and shut up shop – even better!  Not only do I knock the lovely lady down, but I then ignore her completely.

I tell you something, my brain is in a LOT of trouble, not to mention my mouth for running off and starting the whole escapade before it’s communicated properly with the up-top.

Cringe-worthy introductions aside, and ignoring the fact that I spent the majority of my trip to Harefield yesterday waiting (appropriate, I suppose, given the subject of the visit and the hospital), it actually went rather well.  I think they could see that I’m no where near as well as I was last time I saw them and probably consider me a more important/urgent case than perhaps was their perception before they caught up with my  for my review yesterday.

So, provided the mortified coordinator (who shall remain firmly nameless) hasn’t sent a memo round telling everyone that I’m the last person on earth who should be given a second chance, I’m hopeful that my habit of getting through things almost exactly 6-months behind our Emily means that I’m due my new blowers any day now.

We can but hope.

I’ve come to the conclusion that if I’m going to be sitting around on my rump for the greater part of the passing days, then I might at least put the working parts of my body to good use and exercise my eyes and brain by learning some new stuff.

So in a spirit of adventure, I have embarked upon devouring the full 800-odd closely-typed pages of a biography of Churchill written by a man so famous that his name eludes me and shall continue to do until I clamber into bed this evening, seeing as I’m not inclined to rise myself from my typing post to go and check it now.

(The thought has just occurred to me that I could check the author’s name on Amazon, and even provide a link to said biography, save for the very important fact that it would interrupt my flow and my stream-of-consciousness would become merely a trickle.)

It’s heavy going, for sure, and I’m only managing about a chapter a day – any more and I don’t think I’d take any of it on board – but it’s fascinating stuff.  He was quite an impressive bloke that Churchill, not just bowler hats and cigars, you know.

I’m also working my way through the Alastair Campbell Diaries, which are just as fascinating, albeit in a very different way.  They’re much more easy to read and digest, too and being in daily-diary format (my personal preference for historical/biographic material) are much easier to pick up and put down.

I say easier to pick up, actually they’re mildly hard since they’re about the same numberr of pages, but in hardback not softcover, making Alastair Campbell more weighty than Churchill and I bet that’s not something oft said.

Given the political bent to my current reading, I have developed something of an obsession with it over the past few weeks and have additionally to my real-world reading, spent a lot of today online learning all about the parliamentary process and goings on in the Houses of Parliament.

They say you learn something new everyday, which is undoubtedly true, but by my judgement, I can after today go for the next eight and a half weeks without learning a thing and still hit my average for the quarter.

Other than that, I’ve not done much today.  Harefield tomorrow – I’m going to lobby them with my new-found political powers to bump me up to the top of the list and get my butt-sittery days behind me.

It’s been an up-and-down few days (when isn’t it, these days), but more up than down.

The trouble is, this evening I feel so tired and my back is causing me so much bother that try as I might, I’m struggling to pin-point the highs and lows  of the last few days.

A definite high was seeing K’s big niece, little niece and nephew, all of whom I haven’t seen for ages.  It was nice to see their dad, too, although even nicer of him to go get us a paper (thanks, Rob!).

I managed a good hour or so of fairly sedate entertainment, leaving K to do most of the running around and baby-chasing as little Jack set off exploring the wonders of the un-baby-proofed apartment.   Having palmed off the high-maintenance duties to K, I settled myself with a game of chess and a bit of a story book/CBeebies magazine, which is much more my kind of pace.  Although chess with a 1-year-old knocking about is a far more defensive game.

The rest of Sunday was gainfully employed resting, although we did pop over to my ‘rents for some food in the evening.  The trouble is it’s such a long way away now (yes, 20 minutes’ drive is a long way now) that to avoid being a dangerous, half-asleep driver on the way home, we literally only get to swoop in for food and then run away.  I know parents are parents and they don’t mind things like that, but it does bother me somewhat how anti-social we can be.

I suppose it’s one more thing to look forward to post-transplant: those long, leisurely Sunday lunches which start at lunchtime and roll on to dinner time with a good deal of laughing and chatting in the middle.  Another thing to add to my “To Do’s”.

Saturday was very quiet, resting up at the promise of baby visits on Sunday, and expecting a slightly fuller day of visitors were it not for the odd drunken mishap changing plans around. (No names.)

Today started really well after a bad night’s sleep.  I woke feeling surprisingly spritely and sat reading for a while before showering (with my oxygen!) and doing physio and finally getting through the few pieces of copy I had to write to finish off this issue of CF Talk.  We should now be at a final proof stage, which I should receive in the next few days, and  I can check it, correct the mistakes, sign off the whole thing and get it out.

This afternoon has seen a bit of a down-turn, with my chest getting a bit tighter and me more breathless, with a slow onset of not only a headache but a good deal of back pain, too.

As I write, I’m about to whisk myself off to bed to see if I can settle myself and sort it out, before trying to get an early night’s sleep for a change.  I could really do with a good, long night’s kip.  Here goes…

It’s interesting when you do interviews for newspapers, because you never quite know how they’re going to turn out. My experience up to now has been limited to the odd local newspaper reporter giving me a buzz on the phone and doing a bit of a catch-up to expand on a press release they’ve received and the ensuing article rarely bares much semblance to the truth, or to what I said.

What with the perception of the tabloid newspapers in this country for sensationalism and tarting things up, I wasn’t holding out too much hope of seeing my views expressed in the article due in the Daily Mirror.

Imagine my surprise, and yes, my guilty and grudging admission that I was wrong, when I opened today’s Mirror to find not only a brilliantly written appeal for organ donors through their One in a Million campaign, but also the bare minimum of sensationalism in my story. Every quote that is attributed to me, I actually said – that’s something I’ve never experienced before!

It’s great to see organ donation being pushed more and more into people’s consciousness. As I said yesterday, we need to keep encouraging people to sign up and make a difference. In fact, if everyone who said they supported organ donation actually signed the organ donor register, we wouldn’t need drastic measures like the Opt-Out system.

For those of you who’ve not rushed out to pick up a Mirror today (probably still smarting from rushing out yesterday only to discover I wasn’t there…), here’s the link to the article on the web page. I like it, says a lot.

So how many phone calls/emails/texts have I received today to tell me I’m not actually in the Mirror?  OK, actually only about 5, but that’s not the point.

You work feverishly to have such a rubbish quality of life that it merits the attention of a national newspaper, manage to persuade your nearest and dearest that they should be happy to pose for a picture for millions of people to see when they normally balk at a family snap, tell the whole world (possible exaggeration) that you’re going to be in the paper and then it turns out you’re not.

Feeling foolish?  I certainly am.

Honestly, they really did call me to tell me I was going to be in it today.  I won’t say they promised, because that would be a lie and also, let’s face it, who expects tabloid papers to keep their promises nowadays?

Still, they are a very friendly bunch (the two of them I’ve actually spoken to, and the lovely photographer who came round), so I’ll not hold it against them and I’m sure it’ll go into an issue soon.  The trouble being, of course, that by the time I know it’s in that day’s paper, it’ll be too late to let most people know.  You win some and other get away from you, I guess. (there must be a more pithy way to say that…)

I’ve spent today almost entirely in bed again, still catching up from the whirlwind of Tuesday, but still grateful for the chance to do what I did and very much glad I didn’t opt-out – thanks Mum!

Although there’s no official statistics yet for the number of people signing up to the organ donor register recently, I’ve been reliably informed through a source that there was a huge boost in numbers attempting to sign up through the organ donor website and the telephone line.

Once official figures are confirmed, I’ll be sure to pass them on here, but on initial inspection it looks like through National Transplant Week and the hubbub of Prof D’s announcement earlier in the week has really driven home the message of organ donation and its importance.

This is no time for complacency, though, and we must continue to encourage as many people as we can to sign up to the register.  The Opt-Out system, even if it does get through Parliament (which it failed to do just three years ago), more than likely won’t be in place for at least another couple of years.  Without more people signing on to the organ donor register, people like me, Robyn, Jen and thousands of others face losing their lives for the want of a donor.

Although the press spent a lot of time and energy focusing on the Opt-Out portion of Prof D’s report, the full text reveals a true grasp of the infrastructure, education and training needs of the transplant system if it is to improve, not just the need to find more donors.  You can read his full report here, Chapter 4 being the transplant section.

It’s encouraging to see that all the necessary issues have been flagged up and that hopefully they will receive the attention they urgently require.  As the system improves, so, hopefully, will donor rates and less people will die needlessly waiting for their second chance.

I’ll leave you with the most pertinent section of the report, from our current position.  If you haven’t signed the register, take two minutes and do it here now.  If you have signed the register, why not use the two minutes to send an email to someone who may not have and encourage them not to wait for Opt-Out, but to use their autonomy and Opt-In.

“Increasing participation in the NHS Organ Donor Register is critical to improving the current poor position.Targeted campaigns, including options at the time of issuing of drivers’ licences, at general practice registration and in the commercial sector, such as via the Boots Advantage Card application, have led to an increase of people on the NHS Organ Donor Register. Such ways of increasing sign-up should continue to be devised and applied.”

Crikey, what a busy few days it’s been around here – I’m exhausted (although feeling much better for having spent most of the day tucked up in bed).

After my interview with the lovely Mirror lady on Monday, I spent the day not doing too much thanks to strangely wavering energy levels. However, we were starting to get wind of the rumour that Professor Liam Donaldson, Britain’s Chief Medical Officer, was to announce his intention to push for an Opt-Out system of organ donation in his speech on the current state of the NHS.

For more on Opt-Out, click here.

Indeed, by Monday evening, two members of the Live Life Then Give Life campaign had either been interviewed on BBC Radio 5 Live (Jen) or been booked for silly-o’clock in the morning on GM:TV (Emily – “friend of the show”).

I woke on Tuesday morning and stumbled into the lounge to flip through my recording of GM:TV (as if I’m going to be up to watch her at 6.20 in the morning – I love her, but not that much…) and catch her 2 (yes, two, she’s THAT important) appearances on the show – well, technically two shows, as they switch presenters halfway through.

Calm and collected as ever – in fact, more calm and collected than the presenter at one point, who looked like he was about to jump up and hug her – Emily talked through all her experiences and the tale of her transplant, which I think she now has lodged away in a part of her brain which runs on autopilot when someone says “So, you waited two years for a Transplant, then what happened…?”.

Then, no sooner had I caught up with our little missy’s escapades than I had 5 Live on the phone wondering if I’d go on their show in 20 minutes to discuss what Liam Donaldson had just said about Organ Donation.

Now, being the intelligent, media-savvy gent that I am, having graciously bitten their hand off to get on the show, I thought I’d use my 20 minutes for research and go and check what Prof D (as I like to call him) had said.

What 5 Live had failed to tell me was that he had LITERALLY JUST SAID IT. Like, as they were talking to me, he was talking. The upshot being, NOWHERE, not even the newswires had ANY of the text of his speech, nor did anyone appear to be showing any coverage of it.

Reassured that he had, in fact, called for the Opt-Out system to be introduced, I jumped onto Matthew Bannister’s phone-in show (but as an invited guest, you understand, not just Joe Public calling in from his car on the M6…) to put across the perspective of someone awaiting transplant.

Which I did. It was fun. I was quite good.

And so the day moved on and I sat about and read a bit an watched telly a bit and ate some food and did other sitting-about-type things with not a care in the world (almost).

Until just before 6pm when I get a call from a very jolly sounding young guy at the BBC saying, “My you’ve been busy today, I see you did 5 Live earlier,”. I didn’t have much of a response other than to say, “Er, yes.”

“Would you be free to do News 24 at 9 o’clock from Northampton? We’ll send a car.”

Well, clearly, being the media-monkey that I am, I nearly fell out of my chair, but it turned out I was sitting on the sofa, so I just sort of fell sideways onto more cushions, which is a lot more pleasant than falling off a chair. And less painful.

Strangely, though, I didn’t bite his hand off this time. I asked for 10 minutes to make a couple of phone calls before I confirmed it with him.

You see, I was wondering to myself whether or not this was a sensible idea. 9pm is quite late and Northampton is more than half-an-hour away. That meant that at the best guess I’d be out of the house until at least 10pm, and I know that my chest often starts playing up in the evenings.

Was it sensible to go gallivanting off of an evening, when I’d ad a rocky couple of days anyway and didn’t know how my chest would react? Should I be letting my thirst for stardom over-rule my sensible medical head?

So I phoned Mum, because she always agrees with me and I knew she’d tell me that it wasn’t a good plan and that I was being a very sensible boy staying at home, even though it felt a bit deflating. I got her on her mobile in Tesco, where I could hardly hear her. I managed to get through and explain the situation.

“Brilliant – you should absolutely go! It’ll be brilliant and you’ve got nothing to do tomorrow so you can stay in bed all day.”

Right. That rather changed the perspective on things. So, my angel and devil still warring on my shoulders, I spoke to Jolly BBC Guy again and accepted his offer, arranged the car to get me at 8.15 and sat and waited.

When you’ve done as many radio interviews as I have now, both in the studio and on the phone, both live and pre-recorded, you tend to get a small smattering of nerves which remind you you’re doing something cool but don’t get in the way. When you do TV pre-records like I’ve done a couple of times, there’s no nerves, because you know you can keep going over and over the same thing until you’re happy with what you’ve said.

When you’re doing LIVE TV – for the FIRST TIME – on the BBC…. Well, that’s a whole ‘nother bucket of kippers.

And when you’ve got 2 hours to sit and wait and work yourself up, that’s an even larger vat of cod.

Suffice to say that by the time I was perched precariously on a semi-stool in front of a lonely looking video camera in the corner of the main office at BBC Radio Northampton, listening to News 24 down an ear-piece far too large for my ear, waiting for the presenters to talk to me, I thought I was going to throw up. And I was thinking how stupid I’d look to the gallery of TV Directors and Producers watching my video feed if I just leant forward and spewed on my feet.

Still, I managed not to, which is nice, and I turned out to be reasonably coherent in the interview. I only know that because I watched it back when I got home. The adrenaline rush was so huge that I can hardly remember any of the interview itself from being live and have no idea what I actually said.

All I do remember is stumbling through my last answer after my ear-piece pinged out of my ear halfway through, leaving me with my mouth moving and words coming out whilst my brain is busy screaming, “I hope they don’t ask me any more questions because I’m not going to be able to hear a thing!”. Turns out that my mouth is pretty good when left to it’s own devices, because I somehow continued to make sense and moments later heard an ever-so-faint “Thanks for coming on” somewhere vaguely in the region of my left ear and I thankfully realised the interview was over.

For what it’s worth, it was 10.30pm by the time I got in and I’ve slept through a lot of today, or sat in bed reading, but it was definitely worth it. I loved doing it and am still totally addicted to the media. I think it may have inflated my ego a little much, though, because far too many people have been far too complimentary about it.

Still, just to inflate myself a little bit more, the feature piece on me in the Mirror is going in tomorrow (Thursday 19th July), so I’ll get to see that, too.

If you’re going to check it out, be warned that being a tabloid piece, and being part of the One in a Million campaign that the Mirror is running, it’s likely to focus a lot on the negative side of things. I’ve not seen it, so I don’t know for sure, but from previous experience I’m sure it’s going to be a heart-string tugger, so if you’re feeling fragile, steer clear.

My days seem to get more and more roller-coaster-y by the week.

Take today:

Woke up this morning and no sooner had I taken Neve off and got out of bed than I was struggling for breath and feeling distinctly uncomfortable, not helped by a significant amount of back pain, a repercussion I’m sure of sleeping in a slightly more propped up position last night.

With regards to my sleeping habits, it seems I can’t win.  Going to bed breathless, as I did last night, demands a more upright sleeping position, or at least having my head and chest raised a little further than I would otherwise choose to sleep.  While this eases the breathlessness and causes less problems with waking up coughing in the night, it plays havoc with my back, which I think ends up slightly unnaturally curved.  But I digress.

I managed to struggle through some breakfast, which I have to admit was a bit of a chore, and I laboured my way through sorting out and taking my nebs before taking myself back to bed to read, where I felt most comfortable, both for my chest and my back.

At 11.30am, I spoke to the lovely journalist feature writer from the Mirror for about 45 minutes and far from ending up breathless, I seemed to get stronger as the interview went on – completely bizarre and totally the wrong way round.

It was a great interview, covering a lot of my life and progression over the last few years up to talking about the present day and the Mirror’s One in a Million campaign.  It was funny talking to a journalist and constantly second-guessing how she was going to write it up; I was very wary of not saying something which she could infer to mean something else.

Asking me what I thought about people who hadn’t signed up, I was trying to explain how frustrating it is that so many people are in favour of donation without actually signing the register, but without saying it’s frustrating, as the last thing I want is to be portrayed as accusing the country of not caring about organ donation or other people’s lives.  She asked me if I felt “let down” by those people and I had to hastily back-track over what I’d said to make sure that wasn’t the impression I was giving.

I’d never say I felt let down by people not signing the register, but it does seem like such a waste that there are people who’s organs could be used which aren’t simply because they’ve never taken that step to make people aware of their wishes.

That said, there’s an awful lot more to increasing organ donation than merely signing up more people to the donor register.  The Sunday Times ran a front page piece talking about the Opt-Out system yesterday, which on paper is a great idea for increasing the number of organs donated.  But in practice, it still requires a huge investment in the NHS infrastructure and we still need to look into the education and training of NHS staff to make sure that the system is optimised.  Simply changing the way in which consent is acquired won’t be enough.

Back from my rather lengthy segue, I found myself feeling much brighter after the interview and managed physio and nebs before heading to bed for a bit more rest and reading.

By mid-afternoon, I had recovered sufficiently to get out of the house for half an hour to run and errand with K, which was a really nice change of scene.  Although I was tired when I got back, it was nice to get out and enjoy a little bit of the nice weather.

This evening, things have swung back a little the other way.  In preparation for the photographer from the Mirror coming round tomorrow, I decided to have a shower to wash my hair and boy was that a bad idea.

The problem with a shower over a bath is that it’s very hard to wear oxygen in the shower, with wires hanging all over the place and water running over your face, and even harder to wash your hair with specs over your ears, so I tend not to wear it.  Tonight’s shower was, I think, one of the single most uncomfortable breathing experiences I’ve ever had.

It’s not that I was dramatically out of breath – not panting or gasping for air – but more that I just couldn’t seem to get enough air into my lungs to keep me going.  The whole thing from start to finish probably took me about 3 minutes and it was horrible.  By the time I finished I had to climb out and sit down in the bathroom for a good 10 minutes to recover myself.  Not nice.

Still, now I’m fresh and ready for the snapping man and I have very little to do between now and then, so I can try to make myself comfortable and chill out a little for the evening.  Hopefully my breathlessness will be under control tonight, so I can sleep in a more back-friendly position, but we’ll have to wait and see what my chest roller-coaster throws up for me tonight.