Archives: Chest

So it’s been a rough week.  My mood over the last five or six days has been up and down more times than Billie Piper’s trousers in an episode of Diary of a Call Girl (which, by the way, is so atrocious I beg none of you to waste 30 minutes of your preciously short lives giving it your attention).

It’s a struggle to keep yourself moving forward when you don’t know how you’re going to feel, physically, mentally or emotionally, from one moment to the next.  Right now, for instance, I’m feel strong, confident and happy.  Had I written this earlier this afternoon, it would have been a completely different story.

Therein lies the problem, really – how do you deal with a physical and emotional state that’s ever-changing from hour-to-hour?

If I was feeling permanently down or upset, it would give me something to focus on, something to seek to improve or seek help with.  If I felt permanently tired and exhausted, or chesty and rubbish, I could get on the phone to my team in Oxford and get them on the case.  But I don’t feel permanently anything, other than permanently changeable.

The plus side is, of course, that with all the downs come all the ups.  I know that when I’m feeling miserable, I’m more than likely only a couple of hours away from feeling OK again and when I’m feeling chesty, I’m only a physio session and a nebuliser away from being comfortable enough to make a cup of tea.

It’s the endlessness of it that’s starting to wear thin, though – the relentless ride through peak and trough which starts to grind away at the inner reserves one builds up over time to deal with the regular lifts and dips of life.

I feel like I’m slowly losing a sense of “me” – like I’m losing touch with the essence of who I am because I’m being subsumed by a constant need to “cope”, to get by, moment-to-moment from each new challenge to the next.  I don’t have room to let myself breathe (no pun intended), to stop and just plateau.

I don’t know if maybe there’s a sense of a time-pressure that still hangs over me, like I need to make the most of things while I can in case the day never comes when I get carted off to theatre for my new lungs and new life.  Since, physically, I’m seeming to be able to support myself in doing a little bit more at the moment, is the frustration coming from not being able to do quite enough to satisfy myself that I’m making the most of things.

If I’m honest, I don’t think that’s true at all, but there’s so much going on at the moment that I’m not entirely sure what’s right, what’s wrong, what’s real and what’s imagined.  I can’t put my finger on anything that’s making things better or worse and I can’t identify what it is I need to do to stop these endless fluctuations of mood and manner.

I suppose, though, that no one does.  I’d be a rather remarkable person if I knew to solution to all of my problems.  Finding the way out of the mind’s maze is the journey that makes the end all the more valuable.  But when you’re staring at a hedge with no sense of direction, it’s not much comfort to know it’s a shrubbery for learning.

I feel like I should be doing a great, big week-long catch up on here, but I don’t seem to have the impetus to go back over the whole of last week and work out what happened or didn’t.  I seem to remember largely feeling pretty knackered, thanks, no doubt, to the IV’s.

The good news is that they really did the trick and we got on top of the infection before it could develop properly.  My CRP at the start of the course was at 89, which had reduced to just 33 after 7 days, which is good going.  The extreme fighting going on is probably the major cause of the tiredness, too, alongside the drug doses.

I also feel like I should be entertaining you all with a blow-by-blow account of my troubles with Sky, but I think I’m so tired of all this malfunctioning technology and maladjusted people on the end of helplines that I can’t even bring myself to muster up a random thread of expletives to describe the situation.

The IV’s finished on Tuesday and I was up at Oxford yesterday for a quick post-IV once-over.  The best news of the 2 weeks (and recent past) is that my weight is now up to a rather impressive 54.4kg – the heaviest I’ve ever been.  I’m hoping that I can keep it on and keep adding to it even as I slowly start to reduce my steroids.   My lung function had improved greatly, too, back up to 0.8/1.3 after dipping down to 0.6/1.1.  It may not sound like much, but when you consider that’s a  25% drop in lung-function,  it goes to show why I may not have been feeling my best.

I have continued, on-and-off, to look at and sporadically work on new projects and a couple of old ones, although clearly a lack of internet access is a bit of a hindrance to most productivity.  Of course, being offline and having nothing else to use my computer for, you’d have expected, I guess, that I would make some significant progress on the screenplay.  Rather impressively, however, that’s not the case at all, and it’s sitting just as untouched today as it was when I lost the internet connection 10 days ago.

Only I could manage to ignore a chance to turn a technological disadvantage into an advantage – looking the mis-guided gift horse in the mouth, as it were.

There’s not much else to add, really – I suppose it’s been a bit of a boring week or so, or certainly that anything interesting that has happened seems far too long-winded for me to dredge back up right now.  I’m still tired.

Ho hum, let’s keep rolling along and see what tomorrow brings.  Sorry for being boring today.

I’m in a very weird situation with my body at the moment.

On the one hand, it’s reeling from the effects of the infection and is suffering the usual IV hangover that comes with the first few days of pumping extremely high doses of pretty hard and powerful drugs into your system.  On the other hand it’s simultaneously feeling a huge surge of energy and general boost that comes from having large doses of steroids crammed in on top of everything.

It can’t decide whether to be super-tired or super-energised and it’s seemed to settle on some sort of manically-driven half-way house, where I feel like I can take on the world if only I could have a 10 minute cat nap first…

Still, the main thing is that whatever’s happening, it’s definitely doing the right thing.  Without a doubt I feel hugely better than I did earlier in the week, tiredness aside, and I know that if my appetite is returning (or back with a vengeance) – even if it is steroid-related – then I’m definitely on the mend.

I’ve never been particularly good at recognising (or acknowledging is a better term, I suppose) the signs of an on-coming infection, so I’m quite pleased not only that I picked up on it properly this time, but reacted in the right way by getting myself to Oxford as soon as I could and not just waiting around for my next appointment, by which time it could have taken much greater hold and really started to kick my butt.

I was back at Oxford yesterday for a physio session, which is also a cunning ruse on the part of the team to give me a quick, unofficial once-over to see if there has been any improvement.  They think we don’t know these things, but we really do.  Still, cunning or not, it was reassuring to know that the team all felt I was looking better.  Being multi- rather than mono-syllabic must have helped.

Strangely, this period of minor health-hiccup has coincided with a bright spark of inspiration and I’ve finally broken the back of the script I’ve been working on for the last few months.  I’m now 70 pages in, about 20 pages from the end – at a guess – and it’s all coming together beautifully.  I actually can’t wait to sit in front of the computer and bash out the next six pages each day and often feel like I could do more, had I the alertness to keep focused for long enough.

Still, I’m hoping to have finished my first draft by the end of the weekend and to have redrafted within the week.  The stages between my first and second drafts are very quick – it’s pretty much a read through and polish with a couple of additional scenes, at which point I’ll then sit and work through it much more slowly and may seek out a couple of opinions from people who will give me good, honest notes.

Funnily enough, a great friend of mine for whom I am nominally writing the script, happened to text me on Wednesday to see how I was doing (health-wise, not script-wise) and it was the same day that the whole things became clear and concise in my head, so maybe there’s a spooky little connection thing going on in my head there, somewhere.  Whatever it is, I’m really enjoying it.

After waking completely breathless, despite still being on my NIV (which is quite hard to be breathless on) and finding myself standing in the bathroom fighting for air and trying to cough and clear my chest at the same time, it became apparent that my sleep/breathing/NIV difficulties were, quite simply, down to a big ol’ infection which I’ve obviously been brewing for a good few days now.

Horrible as it is and horrible as I feel, it’s good to know the causes of all the disruption in my patterns. I went to Oxford yesterday not looking for answers, but knowing that “all” I needed was a swift course of anti-biotics (hopefully the same ones as last time, otherwise things get complicated with sensitivities and allergies) and some extra physio.

Monday night was the worst night I’ve had in quite a while – waking at 1.30am with breathlessness and a large mucus plug on my right side and the complimentary headache which comes with it all, I then spent the rest of the night trying to find a comfortable and non-distressing way to sleep, which I managed for short, 20-minute spells on-and-off for the next 5 or 6 hours. Needless to say by the time I got up I was more exhausted than when I went to bed.

In Oxford I was pretty spectacularly monosyllabic with my team – which curiously meant I think they knew exactly what was going on; they know me pretty much inside out now. I felt really sorry for them, though, because I was so exhausted and feeling so sorry for myself that I really wasn’t much cop as a human being yesterday – offering hardly anything beyond the necessary replies to medical enquiries.

Still, I escaped the dreaded thought of ending up on the ward (which would just about have finished me off, I think) and came home with my first few doses of IV’s to draw up and the promise of my full delivery arriving some time later today.

The only minor hitch of non-planned IV starting is that I didn’t have time to get a preparation dose of steroids down me, which means I’m in for a couple of days of joint and muscle pain as my body reacts to the IV Meropenem before the oral pred [prednisolone, steroid] kicks in properly. I’ve also now got a nice collection of ulcers on my tongue in protest at the toxins being shoved into my blood stream. Can’t blame my body really, can you? I think I’d protest, too.

Reacting to IV’s is pretty much a common-or-garden response for me and is weirdly reassuring, because if my body is feeling it then you can bet that the bugs are, too. It may take a little longer to kill them off, but I know things will turn around soon. It means having to put up with a few days of tiredness (which was there anyway) and soreness, but at least now there’s the knowledge that things will start to improve by the weekend, rather than merely a looming sense of something not being right.

I’m off to do today’s first session of physio, then to take myself back to bed to sleep off my morning dose, in time to get up and repeat the dose and do another physio session. I do love being on IV’s…

NOTE: For the stats-lovers amongst you, my Lung Function yesterday was 0.6/1.1 (that’s roughly 15/20% according to this site), my Sats were 90% – not very impressive. My weight, however, was a massive 53kgs (fully clothed), so I guess that’s my silver lining.

Like all good sequels, Headaches have come back with a vengeance, making sure to be bigger and better than before.

Having thought myself a chronic hypochondriac before the weekend, three straight mornings of horrible, horrible headaches have convinced me that it’s not just a little something to make me paranoid, but that there’s definitely something up.

Unfortunately, I have no idea what it is.

The headaches would appear to be CO2 related (as with last time), which would suggest that Neve isn’t doing enough work, or isn’t working efficiently enough to clear it off while I sleep. However, the headaches are also coinciding with an uncomfortable amount of neck and back pain, too, which may mean that it’s not anything to do with my O2/CO2/Neve settings at all.

I spoke to my physio at Oxford today, who suggested adjusting my NIV settings for the night and seeing if it made a difference (it didn’t last night, but she recommended trying it again tonight) and then said she’d arrange for the docs to see me tomorrow. I was supposed to be joining her for an exercise sesh tomorrow, but that feels a little way off at the moment, so we figured we should use the appointment to get myself checked over by the team rather than wait for my clinic appointment on Thursday – if I am coming down with something, we need to make sure we nip it in the bud ASAP.

It’s a little demoralising looking at the prospect of another 2 weeks of IV’s less than 3 weeks after I finished the last course, but I’ve got so little room to play with now that it’s no longer an option to just “wait and see how things pan out”.

The worst part of it at the moment, really, is not knowing what they are or what’s causing them. If I was sure of their origin, it’d be easier to gear myself up for a fight to get rid of them, but until I know where they come from, it’s just a case of sticking them out. They are usually gone by the early afternoon and then I don’t feel too bad.

Whatever is causing them, it’s a pretty safe bet that it’s all been kicked off by the seeds of an infection knocking around down there, so antibiotics would appear inevitable.  We can only hope that something obvious presents itself in the next 24 hours or that once the antibiotics take care of the bugs, everything settles back down to normal.  Fingers crossed, anyway.

The good news is my tiredness seems to have lifted, mostly. The bad news is that I woke up this morning with a roaring headache and couldn’t shake it for most of the day.

I’ve noticed that being chronically ill gives you a bizarre form of semi-hypochondria: every little tweak of a muscle, snuffle or sneeze suddenly seems laden with horrible possibilities.

This morning’s headache, for example. More likely than not, it was a simple, common or garden headache of the type we all wake up with from time to time. To my slightly addled brain, however, it could be a recurrence of the old CO2 headaches I used to get before I started on my NIV overnight. The issue there being that since I’m not actually using overnight NIV, it would imply that my lungs have deteriorated further and the NIV isn’t working hard enough to clear the CO2 from my lungs while I sleep.

The chances of this being the case – considering there are no obvious other signs of major chest complaint (no significant drop in lung-function, no increase in volume of sputum etc) – are pretty low, but it doesn’t stop my brain working the scenarios over in my head almost constantly.

Most importantly, I guess, is the fact that I can see my slightly skewed look at things and take a bit of a step back from it. I’m not fretting my head off about it, but it is still playing on my mind a little. I’m sure I’ll sleep soundly tonight and wake up tomorrow with no problems at all, and I’ll feel foolish for even letting the thought cross my mind. But when you’re sitting on such unstable ground, you get a little hyper-sensitive.

I shall be trying to get back into my exercise regime again tomorrow, having missed almost a week now through tiredness. I shall also be attempting to get back into the screenplay again, having failed to match yesterday’s 10 pages with any pages at all today. I’m a bit hit-and-miss, me.

On the plus side for today, K’s little 2 year-old niece and 15-month old nephew (I’m sure I’ll have got that wrong now, I bet I get shot for it, too) came over for a visit today, which was just gorgeous as they were both in such fantastic moods. Even though I was feel really rough with my head banging and pretty short of breath, I managed to have a lot of fun. Luckily, I could play mostly sat down on the sofa or the floor and not move around much (I left policing duties to K and their Mum, who would race after the little one as he crawled off at top speed to reek havoc in other rooms).

I spent most of the time being either a fairy or a ballerina. I’m not quite sure what that suggests our niece thinks about me, but I’d like to think it means she understands that I’ve got a wonderful imagination, just like her.

Even when you’re feeling tired and rough, there’s something truly infectious about children’s laughter – it reminded me what I used to love about working with the Youth Theatre. Having a child’s simple outlook on life is so rare and so delightful, to focus 100% on what’s going on right now with no thought for the history or what comes next.

With two children as gorgeous and laughter as infectious as theirs, it’s impossible to say I’ve had a bad day.

“We do not inherit the earth from our parents, we borrow it from our children.”
Native American Proverb

Sunday may have been a great day, but I’m certainly paying for it now.  Three days on and I’m still shattered and my chest is tremendously upset about something, though quite what it’s problem is I don’t know.

I feel tight, I feel tired and I feel pretty unhappily breathless, too – a great combination for poor K as she has to put up with a very grumpy Oli (for a third day in a row, too!).

I don’t know if it’s all Sunday-related or if part of it is the curse of the project-mention in the blog, but something is conspiring to give me a really rough ride this week and I don’t like it.

I was supposed to go to Oxford today for an exercise sesh with the physio, but there is no way my body is going to put up with 2 1/2 hours in a car and half-an-hour’s worth of treadmills and step-ups.

As if to rub the proverbial salt in, I’ve also not been sleeping at night now, either, which just makes the day-times seem worse.   It’s all one-thing-on-top-of-another and I know it’ll sort itself out soon enough if I just keep resting up and keep my calorie count high, but it’s a real b*stard to go through right now.

I suppose the lows are always harder to deal with off the back of big highs, too, since you’ve had that much further to fall, but I’m doing my damnedest not to let it get me down.  The trouble is, I just don’t have the energy to be up.

It’s a funny thing, that.  Being “down” takes no energy at all – it’s almost like a default position, whereas being “up” requires an investment of energy, even if it’s just a small amount.  I think that’s skewed, someone should write and complain.

Still, there’s nothing better than writing a post on SmileThroughIt to remind me that I’m supposed to be SmilingThroughIt, so I’m off to search YouTube for videos of stupid people falling off logs and bumping their face.

I know that, technically, the tense of the title is wrong, since it was yesterday and not next week, but it was such a fantastic pun which came to me in my half-dead stupor in bed last night that I just couldn’t let it go, grammatically-challenged although it may be.

Anyway, to the point – I had the most amazing day yesterday, flying down to Ipswich to see my Godfather and his family. Yes – flying. To Ipswich. The only thing more remarkable than taking a helicopter down to visit friends and family in Ipswich is that someone who can afford to own a helicopter and fly his friends and family around would choose to live in Ipswich.

I love flying – I’ve done it a few times at school when I was a cadet in the RAF. The only reason I signed up, in fact, was that I heard you got to go for a buzz in a Bulldog – which, for those of you out of the loop on these things, is flying in a type of small, 2-man aeroplane, not unnaturally interfering with a canine.

Helicopters are so much more fun than planes, though, since they are infinitely more manoeuverable than their winged cousins. The float serenely up into the sky – well, as serenely as you can with two engines and four blades shuddering around above your head – and whisk you much quicker than you’d imagine to wherever you want to go.

My Godfather lives in the middle of Nowhere-outside-Ipswich, which is a very quaint little village which does, in fact, have a proper name, but navigation is much easier when you just fly straight into his garden. Road names are rather arbitrary.

They have recently been redoing their house – and by “redo” I mean gut and rebuild, basically – and I could go into immense detail about the 6 bedrooms, 5 en suite, chill-out room, grand staircases, floor-to-ceiling mirrors, televisions behind pictures on the wall and double-pool spa-complex with gym hidden behind a wall of mirrors at one end, but actually I think all you need to know to create a picture in your mind is the fact that you can land a helicopter in his back yard.

There are 2 things you notice about the East of England when you fly over it from anything ranging between 500 and 1,200 feet (we yo-yo’d a little bit, for fun and frolics): 1) East Anglia and Suffolk in particular, is incredibly flat and boring to look at, endless miles of monotonous fields and the odd semi-major road and 2) there are more stately homes or Very Big Houses than you can shake a big stick at. Mind you, your chances of finding anything as interest as a big stick in the landscape of Suffolk is close to zero.

Monotony aside, it’s a wonderful experience flying over everyone’s heads, seeing your shadow chasing across the fields below, spotting the rich areas by counting the number of swimming pools and tennis courts per x number of houses. Helicopter is way to travel. Even a comparatively boring 40 minute ride like ours was about 100 times more interesting than spending 40 minutes on the M1.

I could fly all day – even over Suffolk. I do it a disservice by knocking its dull flatness, because anything is fascinating from the air – watching the roads wind around the countryside, spotting the big houses, fields being ploughed, small country airstrips (of which there are far, far more than you would imagine).

Although we weren’t quite high enough to see things properly, there were times when you could even make out an interesting lie of land that would appear to indicate the presence of an old fort or similar – like being in a live episode of Time Team.

All of which is a very long-winded way of telling you that we spent the day with my Godfather and his family in Ipswich, which I completely and dearly loved every minute of. The fact is, without the convenience of flying pretty much door-to-door (we did have to drive 15 minutes to an airfield at our end), I’d never have been able to go.

It was a really, really wonderful day and it left me completely drained and shattered. Today’s been spent almost entirely in bed and tomorrow will probably largely be, too, but it was totally worth it. I’ve not spent time with them for absolutely ages and K’s never met my Godfather before, although she had met his wife, who’s one of the world’s greatest people when her scathing eye is trained on someone other than me. Luckily yesterday, her husband was around to deflect most of the attention, and I had K there so I didn’t have to endure the “when are you going to find yourself a decent woman” conversation, either.

In fact all she had to complain about was my lack of visits recently, which I assured her I’d make up post-transplant by using her house as my rehab centre. For one thing, it’s got a better-equipped gym than any NHS hospital and a good deal of private city-gyms too, I suspect.

It was great to get away for a bit and catch up with people I love to pieces and see far too infrequently. And to have the luxury of flying there and back, well, that just takes the biscuit.

Ooooh, photos!!

WAY too hot for training today, so why on earth did it turn out to be the first session I’ve done since… Tuesday, I think? Maybe it’s guilt.

Anyway, got through 8 mins of steps and then did half my strengthening – 3×8 curls and 3×8 shoulder raises. I think doing all of the strengthening in one go with the step-ups is too much – I noticed a distinct lack of energy the next day, which I’m taking to be residual tiredness – so I’ve decided to separate them into upper- and lower-body exercises and do them on alternate days.

SIDE NOTE: Weight is now up to 52.4kg – I think this is the heaviest I’ve ever been, or at least close to it.  Hope it keeps going on.

This week I have been going through good days and bad days alternately almost by the book.  The annoying thing about it is that I’ve yet to put my finger on a reason why one has been good and the next bad, other than attributing it to the regular see-sawing of my chest.

Pleasantly, the ups and downs of my chest have not been matched in mood, which makes a nice change having spent so long over the last few months with every butterfly flutter of the lungs causing a storm in my brain.  This week has been pretty positive, all things considered.

I saw my bro on another one of his flying visits and we managed to get a good family night in while he was back for all of 24 hours, as well as catching up over coffee the next day, both or one of which I wouldn’t have been able to do the last time he was home.

I’ve also started to roll along (well, nudge gently) a couple of projects that have been sitting quietly on the back-burner for a while.

Today I sat down with a couple of friends to go over some ideas for a short TV spot for the Live Life Then Give Life campaign, which we’re hoping will serve as a pilot to create a series of them to spread the word about organ donation through the website and other internet video sites.

They’ve taken themselves off with our discussions and brain-storms to draw up some story boards, which I’ll then hopefully go over with my co-director on Tuesday with a view to getting them shot as soon as possible.  The advantage of not knowing how your health is going to hold up from day-to-day and week-to-week is that there is a bit of motivation to try to get things done quickly while you’re feeling good and not sit about on your butt waiting for this, that and the other to fall into place.

Of course, we all know that blogging about it is usually the kiss of death to most of my projects, so we’ll just have to hope that this is the one that breaks the cycle.

I had a long chat to the co-ordinator of the My Friend Oli campaign this week as well.  Bizarrely, although we’ve exchanged emails and messages, I’d never actually spoken to her before.  It became clear pretty much straight away, though, that we’re VERY similar people and that if we’re not careful we’ll spend all day on the phone to each other.

When we did talk business, I discovered that the campaign is actually WAY bigger than I thought it was and looks like it’s going to be all over Durham this year.  We’d really like to introduce it at other Uni’s too, but although we’ve had great support from other Chancellors (after Bill Bryson wrote to them about it) it doesn’t seem to have materialised into support from the student body – and that’s really what we need, as it needs to be co-ordinated from the inside, so to speak.

So if you know anyone who’s at Uni and fancies helping out a very worthwhile cause (with an AWESOME logo, might I add), then please please please get in touch because it would be great to spread this further afield.

It’s nice to have a few things on my plate, but not to have anything that’s too demanding, that’s pressing too hard for my attention or causing me to lose sleep.  I seem, for once, to have struck the right balance.  Let’s hope I can keep it and not find myself flailing down towards that safety net again…