Archives: Difficulties

After almost a full 24 hours tucked away in bed sleeping off the after-effects of our 3am bedtime from Tuesday, I was back up to Oxford today to finish off my IV’s and see how the exercise program appears to be working.

First of all, though, I had the morning to spend with one of my best friends who I’ve not seen for an age, who came around with her shears to attack my unruly barnet, which she did with considerable gusto, even tipping a small vat of bleach onto my head for 45 minutes.

To be honest I’m not entirely sure I like the result, but the thing with Lea’s haircuts is that in all the time she’s been doing my hair (which is about 6 years and counting now), I’ve never actually liked the cut or colour for the first 24 hours. I think it’s because it’s nearly always pretty drastic, so I’m not used to the sight that greets me in the mirror. But without fail a couple of days after I’ve had it done, I always LOVE it. I’m odd like that, but there you go.

We’ve kind of got used to each other now – she’ll finish and stand back excited and happy, cooing and purring over her handiwork and I’ll stare at myself in the mirror and um and aahhh over it for a while and generally be unenthusiastic. Then in a couple of days’ time I’ll do my hair in the morning and be straight on the phone to her to tell her how much I love it. Legend, she is.

What’s more, she’s one of those fantastic friends who you can go for months without seeing but pick up from exactly where you left off as soon as you’re back together again. We had such a great time this morning, it really helped lift any of the remaining fug from Tuesday night.

Oxford was good again. With the steroids being tailed off – reduced by a third in the last week, and with a noticeable energy reduction – I was expecting to see a pretty big difference in the workout session with Lou the physio today. So I was pleasantly surprised again (and pleasantly surprised to be pleasantly surprised again) to get through an 8-minute step-up workout with her and see my sats stay in the optimal/safe 90% range during exercise and rising back to 93/94% at rest afterwards.

The next couple of weeks is going to be the real test of the plan’s long-term prospects as I drop the IV’s and begin to slowly ween myself off of the steroids. If I can keep my appetite up and give myself enough fuel to run through the programs I’ve got, then potentially I can keep my chest feeling stronger and clearer for longer and avoid the usual post-IV dip.

The motivation is still there, even if the energy levels are more variable. It’s just a case of trying to find the right moment in each day to get the most out of my chest without leaving me exhausted for the rest of the day. It’s another of those slow learning processes, but at least it’s got very positive benefits to aim for and a real sense of achievement to top it off if it works.

The end-of-IV checks included looking at my lung function which has stayed at a fairly stable 0.8/1.4, which is good if unremarkable. Mind you, I’ve not been over 0.8 for more than a year now, I think, so it’s probably safe to say that’s pretty much my ceiling now, so as long as I’m staying there and not dropping, we know things are going OK.

Although the exercise program is unlikely to improve my base lung function, the hope is that it will help out with the oxygen flow round my body and help reduce the breathlessness. We’ll have to wait and see if the theory holds true, but for now, it’s time to plough onwards.

PS – thank you all for your wonderful comments and messages of support over the last couple of days, they really do make a massive difference in picking myself up and keeping on. And K wanted me to add big thanks to everyone for her birthday wishes to! So you all rock, muchly! xx

I don’t have much to ramble on about this morning, I’m tired and I don’t think my brain is working properly.

I got another call from Harefield last night, around 6pm (the Tx-coordinator actually interrupted the end of Neighbours, the cheek!).  It took me a while to grasp what she was calling about as I’d phoned her earlier and thought she was returning my call, so I was merrily chattering away to her about this that and the other before she manage to slip into the conversation that she wanted me to go down.

It was a very different experience this time, although I can’t quite put my finger on why.  Feeling completely serene (at least for my part), we drove the back roads so as to avoid the rush-hour motorway traffic and got the the ward just before 8pm, where I slowly went through the battery of tests they perform to check your suitability.

For the first time on any of my calls, I saw one of the surgical team, a really nice German/Austrian doc who talked through everything with us in immense amounts of detail which managed to be both petrifying and completely reassuring.  Not quite sure how that works.

The combination of it being early evening rather than late night and the collection of tests and assessments being strung out over a longer period of time all seemed to help the time pass much quicker than on previous calls.

By 11pm I was showered, shaved and scrubbed in my gown, lying in the bed ready to go, waiting on word from the team.  Almost to the second around 11.15pm I started to feel the nerves kick in and then they somewhat ran away with me.   It’s a strange kind of fear that I felt, centred largely on not knowing what I was going to wake up to.

Strangely, I don’t have any fear of dying on the table, or post-op, nor do I particularly fear any of the rest of the process, but what bothers me is not knowing how it’s going to feel and what I’m going to see when I come round the other side.  Everyone reacts totally differently to the op, so it’s impossible to judge by anyone else’s experience how it’s going to be, which in turn means there’s nothing I can do to prepare.

As nervous as I was, though, I was confident in myself and my decision to go ahead with things, and still excited at the prospect of my new lease of life.

Unfortunately, the coordinator came in just after midnight and let us know it was a no-go.  They had apparently all had very long discussions about the suitability of the lungs, but in the end they’d had to err on the side of caution and decided it was just to dangerous to transplant them in their current state.  It was odd, though, as the coordinator seemed almost as gutted as we were – I think everyone there was convinced that this was our time.

I felt completely gutted, in a very literal, physical sense – it felt like I’d been hollowed out in my stomach and left gaping.  The three previous false alarms had been disappointing, but have never caused such a swelling of negative emotion in me.  The journey home was a long, tough one last night.

Of course much of an adverse reaction to things like last night comes through pure tiredness – lack of sleep does all sorts of odd things to your emotions and thought processes.  I know that things have to be 100% right for me to stand a decent chance of coming through things, so I know the docs are doing their best by me.  I know also that they are thinking of me and will get me up whenever they can.

I still feel tired and flat this morning, but I think it just needs 24 hours of bed rest and I’ll be back on all-cylinders again.  Apologies for typos in this, spell-checking is lower on my priority list than sitting doing nothing at the moment.

I was back in Oxford today for the second half of my annual review and surprisingly, given the distinctly non-positive vibe that I’ve been getting from recent hospital visits, I actually came away feeling good today.

The diabetes tests looked clear – or at least not significantly abnormal, my blood sugars remaining pretty much within the normal range consistently for the last couple of weeks while I’ve been measuring them, which was a good start.

Even better, though, was my conversation with my consultant, the ever-wonderful Dr Bennett, who is encouraged by my progress since June.

I’ve been more and more breathless recently and it’s started to impact more and more on what I can and can’t do (as you’re no doubt aware if you’ve been following along).  Raising it with the team today I was fully expecting downcast looks and a feeling of, “that’s pretty much where you are now,” and facing a determination to put up with it and keep fighting.

To my immense pleasure and surprise, DocB felt that it’s something we can tackle, given the right effort and application and can aim to improve my breathlessness and stamina and bring my quality of life back up.

Looking at my health in general since my downturn in June, she suggested that although I’d had a really bad month and the infection had hit me very hard, it was encouraging to see that my lung function had pretty much returned to what it was pre-exacerbation – about 0.8./1.3 (actually dropping slightly to 0.7/1.2 today, but I was expecting that, and to go on IV’s, anyway).  What this indicates is that the infection, whilst making me seriously ill, doesn’t appear to have any lasting impact on the conditioning in my lungs.

What has been affected, clearly, is my exercise tolerance and muscle mass, both significantly weakened by spending the whole month in bed and by not being worked on in the four weeks or so since.  It is DocB’s belief that if we can work out an exercise plan, with extra oxygen support as necessary, and work to improve my cardio-vascular fitness, there’s no reason we can’t combat the breathlessness.

This was all news too me – good news, to be sure, but news all the same.  I had resigned myself, I think, to the downward slope of things ahead and didn’t really think there was much of a way around it.  So it feels pretty great to be told not only that there’s potential improvement around, but that the docs actually feel like it’s achievable.

Clearly, it’s not going to mean a massive turn around, but if I can raise my tolerance levels enough to manage a trip out of the house a little more often, maybe a stroll around Borders once in a while, it’ll make a big difference to keeping my spirits up.

It’s doubtless going to be a really hard slog and I don’t quite know how I’m going to deal with it at the moment.  I’ve never really pushed myself really hard through exercise and I’ve no doubt that whatever program I’m given, whilst laughably pitiful for regular mortals, is going to be a hell of a job for me.

But when you’re facing the months ahead that I’m facing, I suppose motivation should be too much of a factor – after all, my entire life right now is focused on stretching things out as long as I can until that call comes.  If doing 5 minutes of step ups a couple of times a day is going to help achieve that, I can learn to tolerate the gasping and rasping that comes with it.

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.

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…

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.

What seems to consume me more than anything else at the moment is an overwhelming desire to “do” something – anything really. I spend so much of my time sitting around, either watching TV or surfing the internet looking for articles and information which may interest, entertain or educate me that I just crave the normality of “doing” something.

It doesn’t help that my favourite films and TV shows are ones showing people with high-powered, mile-a-minute jobs which demand 100% attention from them at all hours of the day. I think I’m a frustrated workaholic. There’s so much I want to be doing which I just can’t do because my energy reserves are lower than an Iraqi oil refinery once the US has taken it’s “share” from the depot.

It’s one of the sillier frustrations with my life and I suppose it’s only natural when one is confined within the same four walls 24/7 with barely a break for air. I guess it’s also the attraction of being well enough not to have to think about whether I’ve got enough energy or if I’m well enough to do a job or make a trip or take a meeting – a pleasure I’ve not enjoyed for a good few years now.

When I think about it, my situation now isn’t all that different to how it was a few years ago, it’s just that all my timescales have telescoped. Whereas when I was at work I had to think about whether I had enough energy to do something on both Tuesday and Wednesday, I now have to wonder whether I can do something at 10am and 11am. All that’s changed is the timescale and the size of the task.

When you look at it like that, it takes away a touch of the rougher side of life. It’s all too easy to dwell on the things you miss most when you’re pretty much invalided out of life. But making the fight seem familiar somehow lessens the blow and makes things more comprehensible, even if it doesn’t necessarily make them any better.

It’s all about perception – something I know I’ve written about on here more than once – and the advantage of perception is also its curse, namely that it’s easy to have when you’re feeling OK, but it’s the first thing to abandon you when you start to slide backwards.

Here’s hoping I can cling to this little slice of perceptive thinking for at least a few days and keep myself in an upbeat mood. I much prefer me when I’m like this.