Archives: Family

Today, I have felt good ALL DAY.

It’s a mystery where it’s come from, and I don’t harbour much hope of it lasting into the weekend, such is the nature of my up-and-down life at the moment, but damned if I haven’t enjoyed it today.

I woke up this morning after a good night’s sleep (which is rare enough) not feeling horrible.  As I plodded around the flat after rousing myself from the bedroom, I waited for the inevitable on-set of hideousness which usually hits about 20-30 minutes after I get up, but it never seemed to materialise.

I had the smallest glimmer of a headache after doing my morning physio session, but I hurriedly popped some paracetamol and ibuprofen and by the time I’d done my nebs it had passed, never to return.

We were joined, late morning, by our little niece and nephew on a spur of the moment visit with their mum.  There’s really no better way to start your day than with the fun and laughter of a pair of adorable children.  I even had enough energy to police the tiny terror as he rampaged his way around the flat – a job that’s normally delegated to K or his mum.

In fact, he didn’t cause too much chaos being mostly occupied as he was with emptying the fruit bowl and putting it all back again, before deciding to re-home most of its contents around the living room.  We’re still finding oranges in the most unlikely of places and I’m sure we had a lime earlier, too.  His main occupation after fruit picking was wall-drawing, but we managed to get away with just the mildest hint of blue in the hallway, largely down to the grown-up party-poopers who kept spoiling the fun.

Once they’d gone – with the elder of the two climbing backwards down the stairs (all 18 of them) on the way back down the car park, cheered on by her little bro who would doubtless have been counting them down if he had any concept of numbers – we had time to chill a bit and grab some lunch before I ran K to the docs for a quick hello.  From there, since it’s just down the road from her ‘rents, we stopped in for a quick cuppa, which is lovely because it’s a good 20 minutes from our place and we don’t get to do it very often.

When we got home, another of our friends popped over, enjoying his day off, and while K busied herself baking in the kitchen, we sat through Fantastic Four: Rise of the Silver Surfer.  It was awful.  Not just not very good.  It was abominable.  Like the snowman, but with less fur.

Mr S, who brought it over, had refused to see it at the cinema on the basis that he was sure he wasn’t going to like it, so thought it would be amusing for the two of us to sit through the DVD together on the basis that we’d both spend most of the film shouting obscenities at it for being so rubbish.  We, unfortunately, share a few friends who suffer under the delusion that it’s actually quite good and would be very upset to hear us bad-mouthing it all the way through, so this afternoon proved very useful for both of us.

Seriously, though, it’s AWFUL.  Don’t touch it.  Not even for the kids.

Since then, I’ve managed my neb and second physio session and nebs (lots of those, these days) and am still – touch wood – seemingly going strong.  Dinner shortly, then a catch up on last night’s telly, methinks, before hitting the sack for what I hope will be another bonza night of sleep.

You never know these days how long the ups are going to last, but I seem to have perfected the art of making the most of them when they are around.  It’s good to feel good.

That’s what I want to know.

It’s all very well this daylight hours stuff, with your mornings and your lunchtimes and your “after” noons, but wouldn’t it just be better for everyone if the day started at 6 o’clock in the evening?

OK, granted, the answer’s probably no, but I wish it did.  6pm is the time of the day – not before, not after – when my body decides it’s OK to be human.  For weeks now my daily routine has consisted of playing passenger on the journey my chest takes from grouchy in the morning through surly at lunchtime to grumpy in the afternoon, before it settles down and lets me get on with things from the time the first news headlines are read out.

The problem being, of course, that by six in the evening, there’s no “things” to be getting on with.  Anything even remotely related to the “real” world is out of the window because “normal” people go home at 5 o’clock, the inconsiderate beggars.  Anything creative is pretty much pooped on because just when you get into your stride, dinner turns up – not that I’m moaning about dinner, you understand, since it’s about the most I manage to eat all day at the moment, so I need it all the more.

What I’m left with, then, is basically, the ability to sit and watch telly without feeling rubbish.  I suppose, really, I should be happier than I am that I get any sort of grace period in the day from feel awful, but I am starting to resent the fact that the very time everyone else is shutting down for the evening, I am just starting to rev up.

I’m even working against K, who, like everyone else, is all ready to snuggle down on the sofa whilst my body’s telling me to get up and do something useful.  About the only useful thing I’ve managed to find to do is the washing up, so at least the kitchen looks all right.  I guess.

Thank heaven for small mercies, they say, and I do, everyday.  But sometimes you do just want to bash “they” in their stupid mouths for being so flippant about such bloody annoying things.

I’m not ranting, really I’m not, it’s just that if I was going to be granted a window of energy in the day, I’d rather choose sometime when I might be able to make some decent use of myself, or even just be able to have a coffee with a friend or visit a shop.  (First person to mention 24-hour Tesco gets a spatula somewhere it shouldn’t live.)

“They” also say beggars can’t be choosers and I suppose in these days of low energy and even lower expectations, I can’t really moan about being afforded three hours of feeling vaguely normal of an evening.

Not when there’s so much other great stuff to moan about…. But that’s for another day.

Nothing really changes in my life these days – it’s getting harder and harder to find something new to write about that’s not just droning on and on about how hard things can be, or what minute fluctuations my chest is taking at the moment. So I figured that if I’m not up to making sweeping changes in everyday life, the least I could do was to give the blog a bit of TLC.

So here we have it – the all-new SmileThroughIt, courtesy of the lovely people at WordPress (forr all your blogging needs!). Hopefully, it makes the whole thing a bit easier to read – I was surfing the other day and saw the page for the first time in ages and noticed just how SMALL the font size looked on the front (I only see the “back end” of the page, which is all fresh, clean and white, totally different to the published version). It also, I hope, makes it easier to navigate the old posts, or the most recent posts, as well as seeing when I’ve published.

Anyway, as far as the “me” update goes… well, nothing’s changed really.

I say that, of course, but there have been things going on. It amused me last week actually, when I was catching up via text with a friend of mine who’s got himself couped up in the Big House (read: hospital) and he was asking what I’m up to at the moment. I said I’m not doing anything these days, not really up to much. Apart from still doing CF Talk. And the work I’ve got going with Live Life Then Give Life. And talking to the campaigners behind My Friend Oli. And the odd bit of writing.

I suddenly found myself looking back over my text wondering what, indeed, the Roman’s had ever done for us. (Apologies to Monty Python). In fact, said friend said as much in his reply. Told me I clearly didn’t have time to work, even if I was up to it physically.

So yes, I think to myself, nothing ever changes around here, but I’m still finding myself pretty busy. Saturday was a blessed day of nothingness, somewhat of an oasis after a busy week, which had been draining not just physcially, but not helped my the mood swings and negativity flying about.

Sunday we popped over to K’s ‘rents to say hi and for K to raid their loft to try to find some old books of hers to help with her college course. K being K she’s decided not to do the simple, middle-of-the-road, easy-as-the-proverbial-pie kind of project that they expect their students to do, but rather to launch into a semi-professional study which, all things being well, she is hoping to then go on and get published if we can find the right journal for it. The only thing is, it means she needs to wrap her brain back around the statistics info she learned way back when. I am, naturally, completely useless for this as I can’t really count much higher than 10 and ask me to do division and I’m stuck beyond halving something.

While we were there we were, I think it’s fair to say, attacked by our tiniest niece and nephew. I think it’s also fair to say that they’re not going to be the tiniest for long. The little one is nearly as big as his sister now, despite being 13 months younger. In a reversed nod to Animal Farm, he’s just discovered Two Legs Good, Four Legs Bad – it’s so much easier to cause havoc when you have your hands free to grab, hold and throw things while you move. His sister, meanwhile, is mostly contented jumping on me and her Auntie K.

Today I even managed to venture across town to pick up my own prescription, something which I’ve been relying on Mum and Dad for for a while now, although when I told Mum I’d done it tonight she told me off for not asking her to do it (you can’t win sometimes).

Just writing all this down, I’m starting to realise not only that my life is still pretty full and varied, albeit in a different manner to that which I was used to, but also why I started this blog in the first place. More than just a place to air my frustrations, or my minor triumphs, I began writing these posts nearly a year ago in the hope that putting it down in words might help remind me that life’s not as bad as all that and if I only take the time to look around, I’ll see all the wonderful things I have in my life: my family, K and her family (my second family, really), my friends: a network of people who never let me forget myself. More than anything, maybe I’ve reminded myself to Smile Through It.

I’ve taken a real step back over the last week or so, not so much physically (thank goodness), but mentally.

I’m all too aware that moods change on a regular basis and that it’s more than possible to be up one minute and down the next – that changes in the tone of life are rarely long-held and that normality will be restored with time.  But right now things just seem more difficult than they have been for a while.

I’m not entirely sure what kicked it off, although I suspect it was accelerated last Monday when I didn’t go to the cinema.  It seems like a strange non-event to become a catalyst for a wave of negativity, but it seems to have encapsulated a lot of hang-ups all in one go.

I was supposed to be going to see a flick I’ve wanted to see for a while with a friend of mine who had the week off, who then had to cancel as he’d promised himself to another mate for his birthday all day and couldn’t swing the time for the movie.  It wouldn’t have been much of an issue in the past, I’d have just gone along on my own.  But I realised that I had neither the strength nor the confidence to face going to the cinema by myself any more.

From there, things descended down what I suppose is a fairly inevitable path of reassessment of what’s going on in my life and unpleasant realities creeping into my consciousness again.

All of a sudden my inner-eye has switched focus from what I am still able to do with myself from day-to-day to what is now beyond me.  All I seem to be able to focus on is what I can’t do rather than what I can.  And there’s a lot more things that I’m unable to do than things I can still do.

Everyone has these periodic reassessments of life – where you find yourself taking stock of where you are and how it compares to last year, how it compares to where you thought you’d be, how it compares to where you want to be.  And everyone inevitably faces battles against what they expected and what they find – it’s the way life works that we almost never find ourselves in precisely the position we would like to be in.

Still, I can’t seem to shake the dark cloud that’s descended on me again, dragging everything around me into a mire of misinterpretation and moping.  I don’t like this me, I don’t like being so downbeat about everything and struggling to appreciate all of the wonderful things I’ve got in my life.  But try as I might, I can’t see the light through the dense forest of overwhelming bleakness.

Even the simple joys of spending time with K’s nieces and nephews has been taken away this week as they’re all coming through the early-autumn cough and cold season.

I’m trying so hard not to let myself get beaten down by the hard stuff and to enjoy the good stuff that’s still around but I just feel so bitter and resentful and angry with the world sometimes, but I’ve got no outlet for it.  I don’t have the energy to shout and rant and rave and let it all out.  I don’t have the energy to take myself off for a cathartic drive around the back roads like I used to.  I don’t have the energy or the inclination to do anything to help myself out of my funk and it makes me even more angry – with myself and with my situation.

It’s a vicious circle and I know that I’m helping to perpetuate it by allowing myself to wallow in my unhappiness.  I just don’t know how to take myself out of it at the moment – I can’t see the proverbial wood for the trees and I can’t remember what cleared my head of this fog last time.

The one hope I do cling to is that I know I’ve been here before – I know I’ve felt this bleak, dark blackness and I know it’s gone away, so I know it’s beatable.  I just can’t remember how.  And I hope like hell I’ll find the trump card soon.

PS – I’ve mixed so many metaphors here you could make a cake, so I apologise.  It’s not the kind of post I feel like re-reading to spell-check or clean up, though, so we’ll just have to live with it.

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!!

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…

It has occurred to me of late, rather alarmingly, that I may be turning into a middle-aged woman.  Not in any real, physical sense, you understand – I’m not that weird, yet – but rather in what I like to call my “Mañana Manner”.

For years I’ve observed that strange phenomenon in women who feel a little over-weight to protest over a long, languid Sunday roast of a dozen or so courses with free-flowing wine and truffles to finish that their diet starts “tomorrow”.  So many “tomorrows” are there in the world of middle-aged women that it’s a wonder today every happens at all.

Losing weight is obviously not an ideal goal for me – being the svelt 52kgs (that’s 8st 2lbs in old money or 114lbs to our American cousins) I am at the moment – but I have found the “Mañana Manner” creeping into other areas of my life ever more prominently as I continue to enjoy something of an “up”.

For weeks now, I’ve been promising myself that I will get back to the screenplay I abandoned half-finished at the back-end of May, when I was whizzing through my 6-page-per-day target almost non-stop.  My birthday upset the balance at the end of the month, and then my prolonged “outage” set me even further adrift.  Now, I seem to find excuse after excuse to avoid putting myself in front of the screen to finish off a piece of work I’m actually pretty happy with.

Last week didn’t help, turning as it did into one of those run away weeks which sweep you up from the start and end up dumping you at the weekend with hardly a moment’s pause for breath (paradoxical, I suppose, since I have hardly any breath to pause for) .  An aborted call in the middle of things didn’t help, but I honestly could not tell you whether or not the last three days really did have their full 24 hours or if someone decided to switch us on to fast forward for a little while.

You know the sort of thing I mean: when you go to bed on Monday, wake up in the morning and it’s Sunday and although you know you’ve been busy all week you can’t for the life of you think of the things you’ve done.

So it was hardly a struggle to continue to find reasons not to get back to my desk, although I’m getting pretty good at that now.

It started innocently enough as a case of writer’s block – reaching a mid-point in the story which needed a kick and not being able to work out where it should come from.  I can’t, however, really cling to that as a reason not to have confronted it in the last couple of weeks, since I sorted that problem out in my head a good couple of Monday’s back.

It is much more a case of the intrusion of the “Mañana Manner” on my writing habits: I can’t possibly start writing today, I’ve got to finish this chapter of my book first.  I can’t possibly start writing today, it’s the middle of the week and I shan’t be able to write tomorrow, so what’s the point in getting into the swing of things, just to lose the flow again?  I can’t possibly write today, it’s nearly the weekend.  I can’t possibly write today, it’s Sunday.  I can’t possibly write today, there’s a small black-and-white dog lurking outside my study window.  I can’t possibly write today, the sun isn’t quite bright enough to echo the mood of the piece I’m trying to create and I’m not going to be able to find the right “zone”.

It’s remarkable how creative one can be in forcing oneself not to be creative.

What’s more, it amused me as I thought these things through to myself as I washed-up (yes, washed-up – if that’s not a sign of improvement, I don’t know what is) that for someone who can procrastinate so spectacularly well around doing something I’m passionate about, how is it possible that I manage to park my butt in front of my computer to bang out nearly 1,000 words of blog most days of the week?  I think my priorities may be a little skewed….

Still, the most important thing is that you’ve got something to read to waste 5 minutes of your day.  After my transplant I’ll have plenty of time to do things for myself, for now I choose to put you, dear reader, first.  I’m that sort of a giving kind of person, me.

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