Archives: Difficulties

This is going to have to be a relatively short one (I can hear the cheers already), because I don’t have the energy to sit at the computer for long this evening after heading back across to Oxford this afternoon for a progress check.

Last night I reached my lowest ebb that I can remember for a long time – I honestly couldn’t remember a time when I’ve felt worse in my head about how I felt in my body.  The advantage of hitting an all-time low, however, is that there’s only one way left to go.

Hopefully, in the next couple of days I’ll be able to sit down and put into words the experience of the last couple of days, but for now surfice it to say that the bottom having been hit (stop giggling at the back), the upward spiral is now unfolding.

At Oxford this afternoon (which is a very comfortable drive in the new Mazda), my lung function was a pretty static 0.75/1.35 –  not very impressive, but equally not too concerning, either.  The docs made the, frankly not very difficult, decision to keep me on my current IV’s (gent and cef for those who are marking the card) for another week and to get me back in after Easter to see how things are going.

I had more Gent levels done today, which is a fairly easy process of 2 blood draws spaced an hour apart to get a pre-dose and post-dose peak and trough level for the drug in my blood stream.  Gent can have some pretty dodgy medium- and long-term side effects if given in too higher doses, so it’s important to make sure levels are checked regularly.

The next 24-48 hours is going to be taken up with almost total rest, as I’m hoping to head to London on Wednesday to fulfill a prior commitment which means a lot to me and I really don’t want to miss.  Following which will be another 48 hours enforced bed-rest on Thursday and Friday, for which I’ve already cleared my diary.

Fingers crossed everything has now turned the corner and is on the up.  Perhaps sometime soon my life might return to normal – or at least I’ll get used to whatever my new version of normal is.

I’m sure this is a sign that I’m improving and getting better and more active, but I’ve been frustrated again today by my body’s inability to handle more than a couple of hours of activity.

I seem to recall, as I sit here moaning, having exactly the same problem last November when this blog first started, and was forever moaning that I didn’t have enough energy to tide me over through more than a few rumbles of busy-ness.

So I already know that the answer is simply down to discipline and time, and that my recovery will be greatly aided the more I have of the former and the more I allow of the latter.

But being me, I don’t like it.

Yesterday, K and I nipped round to Mazda to collect our new toy – the brand, spanking new Mazda 6 2.0 5-door auto gearbox delight which is sitting out in the court now.  Immediately wanting to take it for a spin, we succeeded in getting to my parent’s house (where K had to print some college work) and back home as we were both shattered.

Having set aside this afternoon for a fun-run (in the car, not of the charitable, ambulatory kind) to bed it in and find out what she can do, we were both excited when we set out.  Expecting to do my usual round of the country roads, flitting through all the different road types to give us a really good sense of what she can do, we set off about 3 o’clock for an adventure.

Come 4.45 we were sat in my parents’ kitchen nearly falling asleep after just an hour and a half of driving, covering a fairly meagre 50-odd miles.  Surely I can have more fun than that?

But no, I remind myself, I can’t.  I have to accept that I can’t and find something rewarding and relaxing to do with my time at home on the sofa.

So, now K and I have the study sorted and the bookshelves up, with our wonderful new library formed from the merging of my collection and hers, I’ve decided I will simply have to get cracking on going through the host of titles K’s already been through and catching up on some literary culture.

I’m not sure quite how well that’s likely to go, but it’s got to be worth a try.  If I can’t improve my body, at least I can exercise my mind.

For those of you who wish to keep track, I’m just finishing off Stephen King’s Carrie and I’ll let you know what’s next.

…a discharge makes.

It took a while, but I finally managed to get myself kicked off the ward yesterday afternoon.  Probably more significantly, it was at the prompting of the docs and not through me harrying them as much as possible to get them to let me go.  In fact, in contrast to my usual practice of starting my “let me out now” lobbying campaign from the moment I arrive on the ward,  I actually didn’t mention it all to the docs until they raised it with me.

The thing about hospitals is that they provoke mood swings more severe and frequent than turns of a steering wheel in a rally car.  It’s possible to go from happy-go-lucky, ain’t-the-world-gorgeous, by-jove-what-a-wonderful-place to  weight-of-the-world, deepest, darkest blackness in a matter of seconds, and it can take a similar amount of time to recover back to normality.

None of which helps much when you’re trying to make sense of the random and rapid variety of things going on in your head throughout the course of the day.

If I said that’s the main reason I’m happy to be out and to be comfortably ensconced back at home in my study in my PJ’s and dressing gown, I have to admit I’d be lying.  Above all, it’s just nice to be back in control of my own day – not having to rely on the timings of physios, doctors, nurses and ward staff to decide when I can and can’t sleep, how long I’m allowed to rest for and the quality of my rest periods.

Back home, everything is part of my own control.  Except, ironically, my chest. But I suppose you can’t have it all.

I still don’t feel 100% – in fact I’m still wavering around 70% at the moment, but it’s a whole lot easier to be positive about outcomes when you’re not staring at the same 4 walls for 18 hours a day, or being woken up to eat a plate of mush which used to be vegetables.

It’s alarming when you spend as much time looking on the bright side as I do to find yourself in a situation where you can’t see a chink of light, let alone a whole side of brightness.  I’m sure that the very fact of feeling down about the world enhances itself because I get annoyed with myself for letting it get on top of me – a self-perpetuating circle, I suppose.

Now I’m home I just have to concentrate on doing what’s best for me and not over-working myself in my bid to get back to normality.  The last time I came outof a lengthy stay in hospital, I went back to Mum and Dad’s to recouperate, but this time I’m trying to skip that step and stay at the flat with K.

The next few days will tell us whether that’s a good or bad decision – largely depending on whether or not I can discipline myself to remain inactive as long as I need to be.  The danger of being at home as opposed to Mum and Dad’s is that there is far too much temptation to “just do” this and that, and all the this’s and that’s soon add up to being way too much and I find myself over-exerted again.

The main thing is that being back home I feel much more myself – more easy about things and less penned in to someone else’s routine.  Now I’m back I feel like my mind’s my own again and while it’s naturally going to take me a while to wash away all the negative thoughts, they’re certainly going to seep away much quicker in this environment that they were ever likely to on a ward.

I want to say a huge thank you to all of you who’ve left me messages and sent me emails – it makes such a difference to know that there are people out there rooting for me and willing me on.  It’s hard to explain the feeling of knowing that someone’s getting something valuable from a blog like this – it’s part of the reason I set it up but also one of the things I least expected to actually happen with it.

If nothing else, I hope the last few weeks (and hopefully the next few) will help to show that no matter what lows you sink to in health – be it mental or physical – there’s always a way back.  I’m under no illusions that sooner or later the physical is going to become insurmountable, but with a positive mental attitude (oooh, the PMA cliche!) and the support of my family and friends, I aim to make sure that I make it “later” – and preferably long enough to get a fresh set of blowers.

Take care, all of you, and look after yourselves.  Every single one of you is important to someone, and chances are you’re more important to some people than you will ever know.  Never forget that you’re amazing.

Alright, love-in over.

Ups and downs are par for the course in life, and we all learn to live with our own particular roller-coasters and merry-go-rounds.

Right now, I’m in a pretty substantial dip, enclosed as I am in my hospital room with what appears to be very little day-to-day improvement or sign of change.

I’ve been in just under a week now and, while I do feel better than I did when I was admitted, I don’t feel like I’m somewhere the docs might describe as “better”.

What’s become worse over the last few days is my intense focus on my transplant and when it’s going to come.

For the last 20-odd months, I’ve lived with the ever-present likelihood of that crucial phone call at any time of the day or night, but it’s always been something which I’ve lived with in the background and not paid much heed to.

Now things are looking less rosey, and with landmark moments being missed and life being put on hold, the urgency has been brought to the fore and the once-in-a-while thoughts have turned to a daily dwelling.

What upsets me most about things at the moment, though, is how much this borderline obsession is changing me as a person.

Not only do I feel more negative than I have for a while – finding myself struggling to see the fun side of life or consider anything that might be conceived as residing in the “future” – but I’ve also developed what can only be described as a jealousy towards others.

One of my closest “net-friends”, with whom i’ve shared many of the bizarre, amusing, surreal and downright scary moments of the transplant process, has been granted the gift of life which had so long eluded her.

But rather than finding myself eagerly awaiting news of the new joys she’s discovering every day, I can’t bring myself to catch up on things because I am constantly hit by a wave of “what about me” feelings.

I don’t recognise this as a trait in myself – it’s just not me. I’m not a jealous person and i’ve always delighted in the triumphs of my friends, family and all those around me.

So why the change now? What is it about my life at the moment that has brought out parts of myself that I never knew I had?

They say you learn a lot about yourself in adversity and “they” are often right. But how much of my current mood and outlooked is a deep-rooted personality defect that’s been dormant for years and how much is it merely distorted through the prism of life-threatening illness and the hope of salvation?

I honestly don’t believe I’ve changed as a person, nor do I think that my current health-hurdles are insurmountable. Similarly, I don’t expect my run of negative thinking to go on forever, but see it merely as a darker period brought on by hospitalisation – an effect I’m all too aware of from past admissions (both recent and historic).

The trouble with lung damage and infection is that it’s incredibly hard to know when you can reasonably expect to regain your lost lung function after a bout of infection and when you have to accept that you’ve waved goodbye to the portion of lung for good.

Clearly, the lower the function in the first place, the less there is room for movement either way. So when lung function drops, it’s hard to keep the fatalistic wolf from the door – both physically and mentally.

I’m not giving up yet, though. I’ve been through tough times before and although I’ve never considered myself quite as close to kicking it as I have this time, I’m confident that I can get past it.

This is largely thanks to my ever honest and sensitive team at Oxford who know what goes through my head and aren’t afraid to tackle the issues – and fears – as they come up.

I may not be able to bring myself to stay fully abreast of a good friend’s post-transplant progress, but I can still remind myself how often things looked bleak before the big day arrived.

Everything comes to he who waits, and while my new lungs may be the longest-settling pint of Guiness in history, I’m sure I’ll soon be frustrating someone in my position with my tales of new wonder in my life.

No, not like that, you dirty-minded little ratbag.  Hehe – I said ratbag.

No, swinging as in modd-swings, as in ups and downs and roundabouts – a very Miton Keynes kind of blues.

Today’s been full of it.  Every particular kind of “it” you can imagine.  Except that one.  I’ve been up, down, and all around, trying to work out what on earth my head, body, mind, brain, chest, feet and hands are up to.

I’ve decided the answer is that I don’t know.

Having spent the weekend doing nothing, following two days of doing nothing, I’m feeling somewhat bored of nothing-ness.  Today was supposed to be a better day because a) I’ve spent 4 days doing nothing, so I must have improved, even just a little and b) I actually had something to focus on – a telephone interview with David Seaman (ex of England and Arsenal) for CF Talk.

It started slowly (the day, that is, not the interview), it taking me a while to wake up, but I did get up with a good deal less pain than I’ve had for the last few days.  This morning’s discomfort was more in the line of “aches” than pains, which I attribute largely to muscular discomfort after over-compensating for the positions which caused me pain over the weekend.

After dropping K off at work, I prepared for the interview, but when I phoned, David was out (how inconsiderate).

I then sat around for the rest of the morning and I have honestly no idea what I did in the 3 hours between phoning DS and speaking to him when he phoned me back this afternoon.

I’d rather given up on the idea of speaking to him today, actually, and was hugely tired before he did call.  I toyed with the idea for a while of leaving an out-going voicemail message saying, “Hello David Seaman, thanks for calling back, I’m just having a bitof a nap at the moment, but let me know when you’re free and I’ll call you back when I wake up.”

Thought it might seem a bit odd.  Especially if the BT man rang.

Still, I managed to prise my eyes open long enough to hang on for his call.  I managed to stay awake all through the interview, too, which I took to be a good thing because I can’t help feeling it’s a little rude to nod off when talking to a celebrity over the phone.

As it happened, I’m not sure he would have minded, since he seemed like a really lovely bloke.  I managed to glean lots of interesting bits and bobs from our half-hour chat today, including the fact that he is a huge INXS fan, which I promised not o hold against him, in the same way I tried not to hold it against him that he captained the Arsenal side which beat Southampton in the 2003 FA Cup final I was in Cardiff for.

I also learnt he owns a Geri Halliwell album.  He claims it’s his wife’s.

After that, though, things seem to have gone downhill.  (In my day, not the interview, that is).

I picked K up from work and took myself off to bed, where I dozed for an hour or so, then propped myself up in bed with a cuppa to read for a while, but found myself feeling distinctly unpleasant after not too long.  This rampant see-sawing of  wellness has started to drag in the most incessant way.

I’m finding it harder and harder to stay on an even keel mentally when my body sees fit to flip-flop all over the place physically.  It’s not that I seem to be changing from day-to-day, it’s that I can change from hour-to-hour, one minute up and full of energy, ideas and get-up-and-go and the next minute with less energy than a battery-run bunny after a 10-hour run-off against the Duracell dude.

If only there was a pattern or a rhyme or reason to what was happening or when it happened, I would at least be able to square it in my head so that I was prepared for the sudden on-rush of bleakness.  But the constant swinging from state to state creates such an enormous  flux through the day that I find it impossible to anticipate and I find myself being dragged down mentally as soon as I flag physically.

I am hoping against hope that the next few days bring a renewed strength and chance to focus myself on to some of the things I really want to do, because much more of this flip-flopping, see-sawing, up-downing and I think I really might go mad.

Either that or I’ll find myself watching day-time TV, which is the same thing, really.

I still can’t move, but on the plus side, we have nice new bookcases in our study, which means the floor no longer resembles a preparation area for Fahrenheit 451.

Ever since we created our new study out of K’s old bedroom in the flat, we’ve had a desk and filing cabinet, but no where near enough shelf space to collect together the frankly bonkers number of books we both own.

But now, thanks to a mercy visit by both sets of parents, we have two gloriously beaming new bookcases which not only hold all of our current collection, but also have enough room for us to “grow into” – for the next six months or so, at least…

I was entirely useless at helping put them up, though, as I’m still pretty much immobile with whatever this virus is I’ve picked up.  For variety, the pain today has focused itself mainly in my neck, making me unable to glance sideways at people in that wonderfully comical manor which I so enjoy.

Not only that, but it’s meant that every time someone sitting next to me asks me a question, I answer them with a half-hearted wince as I momentarily forget my aches and turn quickly to answer them, only to be reminded instantly that turning my head 90 degrees is exactly the one movement that I’m incapable of today.

Still, at least I’ve not lost my sense of humour. (At this point I’ll gladly thank my parents, K and her parents for not correcting me in a comment below).

Generally, today (and yesterday) have been pretty rubbish.  Not only have I been in near constant pain – or at least major discomfort – but I’ve also had to miss out on a really good friend’s birthday celebrations and also to sit idly by and not be able to help put together things to go in my own flat.  Not a highlight of my year so far, I have to say.

I’m trying incredibly hard, however, not to let it drag me down, although to be honest it’s starting to.  I’m not ill, so I can’t complain really, but I do’nt feel well enough to really “do” anything, which is unbelieveably frustrating.

It’s so hard to define what’s going on with my body, or my head, at the moment and it’s really rubbing me up the wrong way.  All I can hope is that another day or two of rest will be enough to drag me out of it and that as my physicality improves, so will my mood.

If not, heaven help poor K as she’s had to put up with enough of a mono-syllabic, sour-faced, misery-guts of a boyfriend for the best part of half a week now.  Please God I get better soon, for her sake if no one else’s.

There was me thinking I’d got thing under control after my weekend dip and I manage to get myself laid low with a virus.  Not a regular, all-singing, all-dancing kinda virus, mind, but a really pathetic, weedy one which is just enough to prevent me doing what I want to do without making me feel REALLY ill.

The last few days I’ve been struggling with a bit of low energy and this morning I woke up feeling very lethargic, but also with all sorts of aches and pains all over my body.  My lower back was hurting, and I felt like I’d pulled the muscles in my groin (which I think is pretty much impossible when you’re asleep).

Added to that, when I got up I had aches through my knee joints and around my shoulders and pains in my hands and fingers.  Chest-wise, I feel fine – no better or worse than usual, but I just can’t seem to do anything that involves moving without either wincing or nearly losing my balance.

After talking to a few people from the CF Trust message boards, it seems that it’s just a virus that’s going around, which should wear off in a few days with some decent rest, but it’s no less annoying for it.  The best news, really, is that it doesn’t seem to have done any harm to anyone’s chest, or caused infections or anything, which is a definite plus.

So it’s a few days in bed/on the sofa for me, which I’m going to find exceedingly annoy because – as you’ll have seen from my last post – I’ve got a whole load of things that I really want to be getting on with.

Ah well, the sensible, mature me will have to take charge and remind myself that having projects is all well and good but if I don’t keep myself well enough to enjoy them, what’s the point?

Send me get-well vibes!

You know how sometimes you just keep rolling along, a certain sense of momentum propelling you forward regardless of how you’re actually doing?  And you know how eventually, you find time to stop, sit down, take a rest and chill out – and then you discover just how exhaisted and run-down your body really is?

Well, that’s me.

I seem to have somehow bluffed and blundered my way through the last 6 days and now I’ve reached the weekend, I’ve taken two days out to rest and supposedly recouperate, and I find myself more exhausted now than I did when I went to bed on Friday night.

It’s good to know that my chest can be relied upon to perform to it’s best at the right times, although a bit of warning of a delayed-reaction strop would have been nice, if I’m honest.

I feel somewhat aggrieved that I’ve spent my weekend doing nothing to recover and my body feels like it’s been forced to to and Iron Man and a marathon back-to-back – but I suppose that running the backstage side of a comedy night and partying thill 2 in the morning, coupled with a “normal” working week including early mornings and evenings out is pretty much my body’s equivalent to the Iron Man-Marathon combo.

The important thing is to stay on top of the treatments, make sure I’m getting my physio and nebs done and keeping the flow of calories as high as possible to make sure that exhaustion doesn’t lead to any other nastiness.  If I can’t do much but the vital things this week, it’s not the end of the world – I need to make sure I’m not trying to carry on as normal and running myself into the ground – always a danger with me, I’m aware.

So it’s early nights, lots of rest, little to do during the day and plenty of food – when I can get my appetite to play ball.  The rest of the week will have to stay on stand-by until I know that my body’s ready to come back out of its shell.

Sometimes people really make life hard for themselves – and they don’t seem to realise how much they’re contributing to it themselves.

It struck me watching the BBC’s new Fame Academy thing for Comic Relief first off. Every night they all step up into the “circle of fear” to perform slightly out-of-tune, glorified karioke versions of wel-known songs to varying degrees of success (and even I’ll admit that Ray Stubbs had me smiling tonight with his version of “Lola”). But what kind of a mind-set does it get you in to call your performance space the “circle of fear”?

If you want to ward off your nerves and give of your best, you need to be feeling positive and confident when you step up to the mic. Telling yourself you’re stepping into the worst 12 feet of space in a building is hardly gearing yourself up for success, is it?

But that’s not the thing that’s lead me to this. What’s bothered me tonight is reading another blog of a lady who says she’s “not coping” with all the things in her life.

She lists all the many things going wrong with her – some unavoidable, some unbelievably sad and some which, to me, are a matter of pure perspective.

Some people – and this isn’t aimed merely in one direction – don’t seem to know how to let things go. They like to wallow in their failures, their mistakes, their foibles and to make sure everyone else knows how much they are suffering.

You know what? We all are. We all have our own daemons, our own battles to fight, our own mountains to climb. Bad things happen – that’s a part of life.

But the measure of a man – or a woman, or a child – is whether he can take the knocks on the chin and get right back up, look life in the eye and say, “Is that all you’ve got for me?” It’s not easy, but neither is it meant to be – nor should it be. Where is the joy in victory if you’ve not had to fight to get it?

Sometimes you fight and sometimes you lose, but there’s no good to come from dwelling on your losses. That’s not to say you can’t learn from them, but you’ve got to take your lesson and move right along. A rolling stone gathers no moss, it’s said, and why open yourself up to being over-taken by weeds when you can keep on moving and break free?

Blame is the hardest thing in the world to accept, yet some people choose to heap it on themselves. Why go through life carrying a burden that you’ve given yourself? Come on, life gives us enough to carry on our own, there’s no point adding to it. Blaming yourself for things you can’t change is a surefire way to get yourself into a vicious circle of personal degradation.

I don’t mean to sound like I’m belittling people’s problems, nor do I intend to suggest that I’m forever rosey and never have my dark days – anyone reading this blog over time will know how much I’ve struggled. I merely mean to suggest that sometimes, you need to offer yourself a fresh perpective on your situation – to look at it from a different angle and see if the insurmountable is actually just really f***ing hard.

“Fate doesn’t hang on a wrong or right choice,
Fortune depends on the tone of your voice.”

We’re 5 days out from Laughter for Life and things are gathering pace with alarming speed.  It feels constantly like there’s a thousand things to do for us to be ready on time, but actually, when I sit and analyse where we stand, there’s really very little to be done.

It’s reassuring (in a sense) to think that the night could actually go ahead and probably run perfectly smoothly if we all completely stopped working now and did nothing until Sunday.  Of course, that’s not going to happen – we’re all far too commited to making this night the best it can possibly be – but I think it may serve well to remind ourselves as we fret over the final details that actually the leg-work is behind us and we’re now adding the icing/gravy/hair gel/anaolgy of choice to an already fab night.

Today was press release day and with the help of our awesome PR-guru Paula, who’s done a whole heap of work for Live Life Then Give Life in the past, we’ve mailed out press releases to local and national media.  I think the naitonal ones are due out tomorrow morning, but all my local ones have gone today, so I’m hoping that tomorrow and Thursday should be full of phone calls and sparked media interest.  We’ll have to wait and see.

Also today, we’ve made great strides in gathering some great lots for our auction which is taking place in the VIP party afterwards, which include some signed Might Boosh stuff, a raft of Theatre tickets with accompanying bonus features which are still being pulled together through various wheeler-dealings around the place and some great pamper packs and treatment sessions and some awesome original artwork.

Emma is really struggling with a new course of IV’s, which is incredibly rubbish timing for her, but goes to prove that CF pays no heed to any other masters and will wantonly and brazenly do whatever it can to intrude on life.  But, she is showing the classic resiliance of all PWCF and not letting the little bugger get in the way.  “Chest infection? Pah!  I laugh in your face! You shan’t stop me!”

Patrick, from Bill Bailey’s management agency is being a total legend in helping us get things squared away and sorting last minute bits and pieces with us and Steve from Tin Racer, who do all the artwork and design for CF Talk is ploughing through preparing the programme for the evening for us.

It’s amazing how helpful and kind people have been in coming together to make this event happen.  People have given us things, offered extras, consitantly gone the extra mile and done whatever they can to help us along, with goods, services, money or support.

It’s amazing to see just how much goodwill there is in the world and a sobering thought when you consider the cynical times we live in.  People seem to expect so little of other people and often assume the worst.  What I’ve found throughout the last six weeks or so that I’ve been fully involved with this as a project is that people are far more ready to support and help people than I would ever have expected.

I’ve always prided myself on thinking the best of people and often wondered if I’m being just a little naive in my belief in the goodness of the human race.  But this project has taught me to stick to my guns even when the world around me is presenting a universally cynical view of itself through the press and TV – people are fantastic and if you give them a chance, they will bend over backwards to help you out.

There is no way this night would have been possible without the MASSIVE assistance of a huge number of people and each and every one has made contributions that could have stopped the whole show in its tracks.

This is more than just a gig: it’s a chance to tell a whole new crowd of people about the importance of organ donation.  But more than that, it’s reaffirmed my belief in people and it’s also given me the confidence to believe that if I want to do something, I really can do it.

Five sleeps and counting until the night of the year so far!