Archives: Chest

Today’s been a really good day for me and I’m really pleased with myself for it, too. 

Yesterday, apart from slumming it on the sofa trying to urge my chest pains to go away, I spent the afternoon writing another article for the Guardian’s Comment is Free site – this time about Transplantation.

Em and Em, the partners in crime behind Live Life Then Give Life (from whom you should all have bought a T-shirt, not to mention signed up to the Organ Donor Register), organised another big publicity push for Christmas, which I sadly missed out on because of all my recent email hiccups and account confusions.

So, in order to still be doing my part, I mentioned the campaign to the guy who’d contacted me about writing my previous article to see if he was interested.  He said he was, so I spent the afternoon writing up a general summary of the status of transplant in the country and the various different systems around the world.

What I’m most pleased about it that he particularly wanted to stir up a bit of debate about the subject and if you go and check out the article online (here), you’ll find a lively exchange in the comments section underneath, which is really good to see.  Except maybe for the comment about my hair…

After being in the study working all afternoon, my chest was protesting a little again so I stayed on the sofa watching a movie in the evening and headed to bed at a sensible time. 

Better than anything was the fact that I got myself comfortable (not always possible with chest pains) and slept solidly through until 11am this morning – 12 hours sleep being something I’ve not enjoyed for as long as I can remember.  It was blissful to wake up and discover I’d been out like a light all night.  And it’s really recharging, too.

What I’m most pleased with today, though, is that I’ve stayed true to my promise to chill for the next few days before Christmas and have done very little again today.  I’ve been massively helped by the fact that I’ve had friends round to see me most of the day, which is good for sitting on the sofa chatting and not having to move or do other things.

But I’ve also been really good at doing physio sessions and stopping myself from “popping out” or sitting in the study at the computer for too long, or at the table in the kitchen reading the paper – all of which have a tendency to put extra strain on my chest and induce pain here and there.

Fingers crossed, I’ll be able to carry my discipline over to tomorrow, when I’ve got a little more planned, but am hoping that when I’m not out of the house, I’ll either be in bed or on the sofa doing nothing at all.  And K’s back from her parents’ tomorrow afternoon, so she’ll be around to police me.

Had a really good giggle last night when I ventured out with the fam and K to watch my bro enjoy his birthday pressie from earlier in the year with 10 minutes fly-time at Airkix indoor skydiving centre in MK.

It’s unbelievably cool – a little plexiglass bubble one story up above a pair of jet turbiney things (that’s their trade name, obviously), which serves to suspend people mid-air as if falling at great speed from a plane.

My bro, the sicken sports fanatic that he is, got on amazingly well.  He did 4 “jumps” of 2.5 minutes each and manged to learn 8 out of 10 techniques of flight.  His instructor told us afterwards you’re supposed to learn one per flight, so he’d doubled the expectation and mastered most of them within his 10 minutes.  I really hate him sometimes.

Mind you, it was hilarious to watch him with his little cheeks wibbling away in the uprush of air.  He even managed to dribble upwards.  It feels a little odd when you watch people do it, because you’re the other side of a plexiglass window about 2 feet away from them, so if they lose control a little, they endup nearly head-butting you.  Nervous laughter abounds amoungst the spectators getting a little weirdly close to people the don’t know in zoo-like conditions.

It’s an amazing thing, though, the Airkix centre and I have to recommend it to anyone as a gift, or even as a treat for yourself.  It’s not cheap, I know that much, but it looked like so much fun.  I was extremely jealous, but I’ve got something else to add to my list of post-tx “must do’s” now.

After we watched his diving antics, we all headed off for a nice Tex-Mex dinner, which went down wonderfully.  By the end of it, though, I was exhausted.  Is wasn’t until we were in the car on the way home that K pointed out that I’d woken up at 6.30am that morning (no reason, was just awake and couldn’t nod off again) and without a sleep in the afternoon, it was no wonder I was a touch on the snoozy-side.

This morning I woke up even earlier, 5.30am, with roaring chest pains.  After my last little pointless jaunt to casualty with over-exuberant pre-diagnosis, I decided it best just to grab some painkillers and immobilize myself for the day, so I duly took to the sofa in true grumpy-lunged sulk.

Watching the sky-diving and at the restaurant I’d gone without my O2 and I think this is my body’s way of telling me that it was distinctly unimpressed with my choice to move around quite so much without additional support. 

I’ve been a lot more comfortable this afternoon than I was when I woke up, but I know a chiding chest when I feel one, so I’m sworn to “good boy” status for the next few days to make sure I can make the most of Christmas.

It was also pointed out to me today by the lovely Lady K that my last update vaguely referred to things going on in April without any real expansion.  Apologies for the vagueness, and I promise I’ll post with full and inclusive April updates shortly, but for the record there will be a fundraiser for the CF Trust through the MKT Activ8 Youth Theatre by way of a mainstage performance in the middle of April.

More to come, so watch this space….

The meal was nice – and everyone enjoyed it (including me) – but it was WAY too much physical activity cooking it and I left myself feeling really quite rubbish.

K cooked the starter and the pudding, I did the main, and it was clearly not a cleverly thought out plan.  What I should have done was chosen something that needed preparation and slow cooking in the oven so I wasn’t standing over the stove for half-an-hour odd while it cooked, but could have sat and rested.  More fool me.

It was a lovely dinner and it was great to sit around with the whole family and just eat and chat (pretty much what my family does best).  By the end of the meal, though, I was shattered and my chest was really tight, so I took myself straight up to lie down on the bed.  I thought it would just be for a little while and I’d be back down, but in the end I was settled there for the night.

Today’s been another pretty rough day, paying the price for the over-exertion yesterday.  I’ve been pretty low all day, just feeling a bit pissed off with the seemingly endless merry-go-round of exertion and recovery.  I know it’s what I should be used to by now, but it still grates that I can’t do things two days in a row or if I over-stretch myself it takes me days to recover.

Still, I’ve been trying hard not to be too gloomy about it all and had fun this evening playing a game with my bro, Dad and K.  I won, which is rare for me, but still managed to prove myself stupider(!) than the rest of the family by trying to play at being banker.  I should really know that maths isn’t my strong point and if I want to avoid getting annoyed with myself should give up the job at the start not try to bluff my way through it again and again.

I can see, reading what I’m writing just now, that the sunny-side of my disposition is struggling to get through;I’m taking everything to heart and being downcast about pretty much whatever’s going on today.  It’s just a bad day, though, and everyone has those. 

Doubtless I’ll hit the sack tonight and get a good night’s sleep (I feel exhausted) and things will look much brighter and sunnier in the morning.  These feelings never last forever, it’s just a matter of buckling down, acknowledging the rubbishness and ploughing through it to tomorrow.

For all the forward motion I’ve been making recently, the pendulum was bound to swing back.  I’m sure someone far more intelligent than me said something once about equals and opposites and all that kind of thing, but I have better hair than him, so I can’t be bothered to quote him properly.

Still, after confidently striding forward and warning myself strictly against doing too much too soon, I spent this afternoon in bed after, well, doing too much too soon.

I hasten to my own defence to say that a) I spotted it early and nipped it in the bud and b) actually the hour-or-so I spent in bed on Neve (hmmm… maybe not such a clever idea to name the NIV after all – that could get a little confusing) and the extra session of physio have done me the world of good and this evening I feel top-notch.

Yesterday I went to Oxford to finish IVs – that’s a grand total of 5 weeks all together, my record for recent times.  My chest is a lot better and my lung function was hitting the 0.7/1.4, which is about as high as I go these days.  For those of you who work in percentages, that’s very roughly 20%/25% predicted.  More encouragingly, my SATs were running at 93% on 2 litres O2, which is unheard of for my since around August.

I’m coping pretty well off-oxygen now.  I’m still using it almost all day, but I can cope with wandering around shops (ok, Borders) without it for an hour or so, which is good.

I try to justify it by saying that it makes shopping a whole load easier not having to lug a cylinder around the shop with me, and I reassure myself that I’m good and have it in the car when I’m driving and wear it all the time at home, but if I’m truly honest with myself, it’s still very much a vanity thing.

K and I decided we wanted to cook dinner tomorrow for Mum, Dad and my bro, who’s home for Christmas, to thank them for putting up with me for the last few weeks (well, not my bro, ‘cos he’s not had to cope with me invading his life, but it seemed a bit mean to cook for everyone else and not him when it’s in his home…).  So we had the cunning plan of hitting Tesco’s late last night to avoid the crowds.

At 8pm we thought we’d got it right and BOY were we wrong.  It was still heaving and in one despairing moment of realisation I stood at the threshold of the store in Kingston and realised that it was WAY too huge for me to wander round, especially at the end of a long day.

It’s always a little dispiriting to have to acknowledge your limits – especially when things are looking up again.  But I’m proud of the fact that I didn’t just try to “soldier on” through the shop and completely wipe myself out, but instead called it a night with two bars of Toblerone and headed home.

I think, actually, our late-night jaunt is probably the crux of what lead to my energy shortage this afternoon and, again, I’m pleased I spotted it and took action (or rather, in-action) to combat it without trying to soldier through.  I feel much better for it physically and it’s given me a boost in my mental confidence to know that I’m learning to listen to my body again.

So tomorrow I’ve prescribed myself a day of rest, doing nothing all morning and afternoon and plenty of physio so that I’ve got energy enough to help K whip up a storm in the kitchen and give Mum and Dad a proper thank you.  And my bro, I suppose…

On my usual daily tour of my favourite websites today, I stopped in on my friend Em’s blog to discover the following paragraph, which so neatly encapsulated the to-ings and fro-ings of my mind and body at the moment I thought it silly to try to reword it to enlighten my readership and decided instead just to lift it wholesale and try to pass it off as my own.

“Sadly after 22 years I still don’t quite seem to have got my head round the concept of “improving” as opposed to “magically cured and reinstated with working lungs” and so the minute I feel a turn around I start jumping around and doing lots and then am surprised when said behaviour doesn’t go down well with my lungs which were (for want of a better phrase) breathing a sigh of relief that I was finally operating on a level they can maintain. I mentioned to my physio that you’d think I would have learned by now, she neatly sidestepped this remark by laughing politely and neglecting to comment.”

Sadly, my sense of duty and honour (and the knowledge that we have enough mutual friends for it to be highly unlikely that I wouldn’t get caught) meant I just couldn’t bring myself to fully commit to the stealthy liberation of the text.

I’d like to say my conscience was pricked by the knowledge that Em managed to write it from her hospital bed and went to all the trouble of emailing it to a friend and getting it posted for her, but I know if I did that then she’d eventually read this and send my huge screaming emails and numerous phone calls berating me for jumping on the pity band-wagon which we all so deplore.  Plus it’s also untrue, for that precise reason – pity is a trait all people should deplore. (Doesn’t that sound like a high school philosophy essay question? Pity is a trait all people should deplore: Discuss)

At the end of the day, when someone says what you want to say better than the way you wanted to say it, it’s best to hold your hands up and admit defeat than drive yourself barmy trying to best something that you can’t.

If you needed any proof of that, just take a look at what a complete and total load of waffle I’ve written trying to justify lifting a paragraph of a friend’s blog in order to help explain the challenges of getting back on your feet.

I think I should go and lie down.  Maybe this plagiarism lark is too heavy for me, after all.  Next time I’ll stick to my own drivel.

Another good day today, and another day of what economists term “positive growth” – although I have to say I wish that referred to my personal economics rather than the state of my chest.

Actually, I take that back – I’d take empty bank over knackered blowers any day of the week.  Still, it’s got to show how much things have improved over the last week or so that I can actually write half a paragraph complaining about lack of funds as opposed to anything health-related.  What a relief.  I think.

Having spent a week away from K, it’s been absolutely lovely to finally spend some time together yesterday and today.  She’s been so amazingly supportive and has been there for me all the way through and has also dealt superbly well with not being there when I needed it, which I know from personal experience isn’t an easy thing to do. 

While I’m on the subject of support, though, I’ve been blown away by all the messages of support I’ve had from people reading this blog – it really is something else. 

It’s a remarkable feeling to know that you’re loved and thought of by people all over the world (and it really has been from all over) and I want to say that every single one of your messages have made a huge difference in encouraging me and keeping me going when the times have got really tough recently.

As a side note, those of you who’ve been emailing me at my onetel account, I have to apologise for lack of responses, because I can’t access my emails from Mum and Dad’s.  I went back to the flat for the first time in a couple of weeks today and was there long enough to check my mail and discover a whole raft of messages to which I want to reply but didn’t have the time.  So please excuse my rubbishness, but I will get back to you, I promise!

As far as today goes, I’ve had a lovely day of chilling out and relaxing.  This morning, after sleeping in nicely till 11ish (caused mostly by poor sleep and drug-related tiredness), K and I were visited by S&S, no longer the newest double-team on the block, but happily still going strong. 

It’s been a while since I caught up with them, so it was good to have tea and chats and to humiliate myself with my awful knowledge of music while we channel-surfed through MTV, VH1, TMF, Q and other letters.

When they’d gone and we’d had a nice big bacon sarnie lunch with Mum and Dad, with super-fresh bakery bread, I did my drugs and caught a cat-nap before K and I ventured out in the car for a bit of a spin and stopped over at the flat, where I checked my mail and gathered a few bits and pieces to keep me occupied at home for tonight and the week ahead.

It was good to get out of the house properly for a bit and I was impressed at my discipline in again not pushing myself too far in trying to do too much. 

Our friends at The Lodge, including the aforementioned S&S, D and PS are throwing a Dirty C Word Hawaiin Luau at their place tonight, which I really wanted to pop my head into, not least because it was at least partly motivated as an opporunity for K to get out to.  But it would have been doing too much and I doubt I’d have managed to stay for just the quick “hi” and “bye” that I’d wanted to because I’d have had so much catching up and gossiping to do. 

Mum’s got all of her book group over for the night tonight, but I’m shutting myself away upstairs and being anti-social.  Although I get on well with Mum’s friends, I’m just not sure I’m up to maintaining conversation with big groups of people at the moment, so I thought it best to opt myself out of it and sequester myself in my room with Dad’s laptop on wi-fi and today’s papers to keep me occupied.

I’m sure I’ll soon have my Social Strength back up to full-speed, but like everything I’m working with at the moment, I’m trying not to take too big steps too quickly.  Slow and steady wins the race, as someone once said about something to someone. 

Profound, that.

It may be slow progress, but I’m definitely learning – I’m improving my understanding of my body day-by-day and feeling better and better as a result.

The last two days (Monday and Tuesday) I’ve done absolutely nothing – the closest I’ve come to expending energy has been throwing a sandwich together or making a cup of tea, and even that I’ve done very rarely.

I’ve been incredibly strict with myself about sitting doing nothing, or next to nothing – watching TV or reading, not even letting myself work up to a blog (sorry about that) – and I can honestly say I can feel the difference.

Granted, I’m on new antibiotics and a not-inconsequential dose of steroids to boot, which I have no doubt are pushing things along, but lack of energy expenditure is certainly playing a big part in my improvement over the last few days.

Today for the first time in 5 days I actually left the house, heading over to Oxford for a physio session and a quick once over.  For the first time since I started IVs back in November, I actually had enough blow in my lungs to check my lung-function, which didn’t come out great, but the fact that I could do it at all was a step in the right direction.

We’ve opted on another week of IVs in the hope that the improvment that’s been shown over the last 7 days continues and when I eventually finish next Friday (the 15th), I should be fit enough to get through Christmas and New Year relatively hassle-free.

I’ve very much stopped planning ahead over the last couple of weeks and have avoided arranging things that I may have to cancel, simply because it drags me down so much mentally when I do. 

Christmas is rather unavoidable though (and I wouldn’t want to avoid it, either, however much of a Scrooge I may appear from time to time) and so my best plan of attack is to make sure I’m as well as I can possibly be and that I know my body well enough (at its newest settings) to stay on top of things on the day.

The last few days have really energised me, though, and I feel a lot more positive in myself.

At home we have an old joke stemming from my Mum when we were little, whereby every time we complained of any small ache, pain or minor ailment she would eventually come back with the line, “You’re probably just tired.”

It was infuriating to everyone at the time and hilarious to us all now, but I the last few weeks and months have driven home to a large extent exactly what she meant.

When you’re tired, physically and mentally, everything becomes a stretch.  Things that wouldn’t faze you normally can become the biggest hurdles when lack of sleep or simple exhaustion gets in the way.

Having bowed my head and accepted that yes, maybe mother was right (occasionally) I find things much easier to deal with.  It helps that I’m in a well-supported environment and I know that if I need to sleep, I just take myself off and sleep and I don’t have to worry about anything else. 

Hopefully this new-found self-knowledge, when combined with my old self-discipline at staying on top of what I can and can’t do, will help me into a new period of positivity and enable me to move forward in getting some of the things I want to do done.

Even if I don’t get them done, here’s hoping that perhaps I can muster enough time, energy and inclination to actually attempt them.

Watch this space…

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.

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.

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.