Written by: Admin

Today’s been rubbish.

I woke up fine but by midday I was totally out of energy.  I’ve no idea where it all went, because I’m sure I wasn’t using that much – i was only sitting at my desk trying to work.

All afternoon my brain has been mush.  It’s not listening to what I want it to do and as for focusing on anything vaguely work-like for more than 10 minutes at a time, you can forget it.

My chest feels OK – bit full of rubbish but nothing majorly out of the ordinary.  I’m sleeping OK.  I don’t think I’ve been doing too much.

But something is clearly not right.  I just don’t know what it is.

Man, this is frustrating.

It’s funny to read people’s observations on my posts on here, both in the comments on the site and emails I receive.  A lot of people seem to have had the same thought: that I do too much on my Good days, which in turn leads to the Bad days.

I have to admit that this is something I have thought of before, but I just don’t seem to have taken heed of my own warnings.  I think my family probably think the same thing, but then how often does one really listen to one’s own family when they’re telling us something unpalatable which, to an extent, we already know?

I certainly think that the thought must have occured to my Mum and Dad but they’ve refrained from bringing it up with me because they know it’s a lesson I need to learn for myself and won’t accept being told from outside.  It’s the way my family has always worked, and it’s made me all the stronger for it.  It’s a strong parent who can take a step back and let their kids make “avoidable” mistakes in order to help them learn and grow – and it’s something I’ll always be grateful for.

But having had comments on here now confirming my worst – and most hidden – suspicions about my general appraoch to getting on with things, it really seems to have sunk in.  Well, I say that now, but we’ll have to wait and see where it goes from here.

I feel almost like I’m turning over a new leaf – making a pledge to myself to try to regulate the amount of things that I do so that I can either maintain a constant energy level throughout the week, or else build in sufficient rest periods for the times immediately following major (or minor) exertions.

Yet again, I’m reminded of the value of this blog as so much more than merely a record of what I’m doing with myself from day-to-day.  It’s helped me to learn and grow and stay in touch with the essential elements of making sure I live my life to it’s fullest for however long I’m given.

I have to accept that things aren’t going to be a breeeze and I’m not going to be able to do all the things I want to do.  But I can also promise myself that I will do whatever is necessary to get the most out of the experiences and activities that mean the most to me.

So thanks to everyone who’s emailed, commented and talked me through my highs and lows – you make a big difference to the way things go around here.

Keep smiling, because I am.

I’m thoroughly confused.

I should be used to being confused by my body by now, I really should – nothing should really throw me about it’s day-to-day fits and wobbles and ups and downs. But somehow I just haven’t got used to the unpredicability of it all.

Take yesterday, for instance: after a really rather awful, moody, tired Sunday, I slept averagely well and woke up at 8.30am full of energy and enthusiasm and raring to go. I actually wanted to eat breakfast, which is something almost wholly alien to me, since my appetite doesn’t usually kick in until mid-morning at the earliest, so the extra energy boost was great, too.

I spent all morning ploughing through mountains of work and knocking things off my To Do List left, right and centre. I amazed myself at the speed with whihc I rattled through all the things I wanted to get done and I’d almost achieved everything by midday.

I felt entirely un-guilty about taking some time out in the afternoon to pop over to K’s brother’s to play with the little ones – one of whom has just discovered how amazing it is to be able to propel yourself towards whatever it is you want. I wouldn’t so much call it crawling, just yet, it’s more like commando-crawling as he doesn’t appear to have worked out that using your legs can help, but he’s on the cusp of a major revelation, that’s for sure.

Back home after an hour of fun and games (OK, an hour of sitting on the floor playing with Fifi and her Flowertots – don’t ask me who they are, we were just sticking them to the magnetic board….), I settled in to polish off the rest of the pressing bits and bobs which needed dealing with before close of play, then settled on the sofa to watch some TV and hit the sack.

Now, today, after an identical night’s sleep, with perhaps an extra hour in bed, I have managed to achieve almost nothing. Since getting up this morning I have felt entirely drained of evergy, lacking in any kind of resource to keep my eyes open and my brain switched on.

Compared to yesterday, I’ve got next-to-nothing done, although all the important stuff has actually been dealt with, but I had to go back to bed at lunch time and it’s really only since taking K to college this evening and sitting back at my desk around 6pm that I’ve been able to engage myself to do anything at all.

It’s immensely frustrating because I just don’t know where this energy-drain has come from. I seem to be yo-yo-ing up and down from day to day with little or no reason behind the ups and downs.

I remember saying here previously that I’d be OK with it all if it made sense and was plannable, but it’s impossible to know what each day is going to be like at the moment and I can’t work out whether it’s OK to plan things or if I should just wipe my diary and play each day by ear.

I don’t suppose I can really start doing anything differently, other than, I guess, be strict with myself at stopping when I don’t feel I’ve got the energy and making sure I rest myself when my body says no. But when you’re trying to plan for a major event just 10 days away (how exciting!), it’s frustrating not knowing how much you’re going to be able to do all day.

Still, all moaning aside, I can’t really complain about today because I did get to further explore my media-tart side of my personality with a live phone interview with Peter Allen on Five Live Drive for the BBC this evening.

The wonderful Fi Glover, who’s Radio 4 show Saturday Live I did a few weeks back, passed on my details to the editor of Drive and, sure enough, I got a call at 11am this morning to talk about things and asked if I’d come on the show live this evening at 5.25 – pretty much prime time.

It was a bit of a tough interview because, obivously, I was mostly interested in plugging Laughter for Life and transplantation, but it seemed that they were more interested in the CF angle of things. Which was nice but, you know, not really “news”… Still, I managed to get through all the CF awareness stuff, plus a plug for the gig, plus a load of awareness raising for organ donation AND a mention of the Live Life Then Give Live campaign. Not too bad for 3 minutes air time, I thought. Even if it did involve a little bit of talking over Peter Allen as he tried to interrupt…

So the publicity machine ploughs on and the date of the show gets ever closer. Things get more exciting by the day and I’ll be sure to post updates on here as soon as I get them. hopefully, I’ll have more warning of the other interviews and things I’ll be part of, which will mean I can put heads-up posts on here ahead of time.

I’m in a bad mood: a grump, a fog, a depression, a dip, a lull, a negatively-buoyant, anti-happy smudge of a grey-day melancholy.  And I don’t really know why.

It could be the over-exertion of spending a day on my feet shooting the Youth Theatre video yesterday, where I was less than proficient at keeping my energy levels boosted and trying to stay seated as much as possible so as to conserve as much energy as possible.

It could be because this afternoon I went out to the cinema to see Hot Fuzz (which is great) when I should have been lying in bed forcing my body to recover from yesterday’s runabouts rather than forcing more activity on it.

It could be because I missed my dose of steroids at lunch time and didn’t catch up with them until nearly 6pm this evening, so my system is significantly down on it’s currently beefed-up power supply.

It could be that after going to the cinema, which I shouldn’t have done, following a day of shooting which I didn’t manage well, forgetting my steroids and driving over to Mum and Dad’s and back again just for a bite of dinner and not taking oxygen along for the car journey, I’m just a little bit pooped.

It could be that I’m just tired.

Whatever it is, I’m in a really bad mood.

This is supposed to cheer me up – my blog and blogging on it.  It’s supposed to remind me that when the going gets tough, the tough get going – or at least in my case the tough laugh in the face of the other toughness and tell it to be on it’s merry way because tough isn’t welcome in this part of town and if it doesn’t go away swiftly-and-I-mean-right-now then I’m going to do something really drastic like laughing even harder.

It’s not.

I’m still just feeling pretty grumpy.

So I’m clearly beyond help.  Far beyond the outer reaches of the depths of the far side of the distant part of somewhere that’s really not very close to the vicinity of the place where I am and help’s ability to reach me.

So there’s only one thing for it: I’ve just got to go to bed.  And sleep.

Like all big problems in life that at times seem insurmountable,  I’m confident that this will see me through.

Actually, thinking about it, there’s not many insurmountable problems that are cured by sleeping.  Insomnia, maybe.  But not cancer.  Or AIDS.  Or even HIV, for that matter.  War is rarely solved by sleeping, although I suppose if all the people on both sides were sleeping then they couldn’t be shooting each other, so it’s a kind of solution, but not really practical or workable as peace-plans go.

Murders aren’t solved by sleeping, and dogs aren’t walked by sleeping.  Sleeping does nothing to stop the spread of malicious rumours regarding the alleged illegal exploits of footballers or politicians, nor does it make any headway into the resolution of global warming.

It does, however, stop mindless, idle drivel like this, because when I’m asleep I can’t type.

There are many things on this earth and in this life for which we should all be thanking the Good Lord who watches over us.  And me being asleep and not writing any more of this is one of them.

Good night all.

Avid readers (do I actually have any….?) will no doubt remember my excitement at the turn of the year to receive my – free – upgrade of my mobile phone to the office-in-a-phone BlackBerry Pearl.

Now, apart from having it banned in the house, things have all been pretty rosey and happy with my new toy and I’ve enjoyed having it very much.  You will also remember that the main reason for getting myself the ‘Berry was so that I could stay in touch with the outside world while I was in hospital – I could continue work on CF Talk, I could stay in touch with my mates via email, this saving enormous text-message bills, and I could keep abreast of all the other various random emails which come my way from time to time through various different sources.

In particular, I was keen that I would be able to use it to email updates through to my blog when I was incarcerated at Dr Majesty’s pleasure – so that people would know what’s been going on and how I’m doing.

The problem I discovered with my theory throughout this week was simple: nothing happens.

In hospital, unless you’re on the critical care list and you’re hanging by a thread (and thank heavens I’m not there yet!), then time spent in hospital is mind-numbingly boring and NOTHING happens to you during the day.

I realised the idiocy of writing a blog on the goings-on in hospital when I sat down to consider it on Wednesday night and realised that the single most interesting, comment-worthy thing that had happened to me all day was that my dinner was delivered 45 minutes late.  I mean, people, it was AFTER 6pm!  Can you believe it?

Now, I’ve surfed some pretty spectacularly dull blogs in my time and I’ll confess that this isn’t always a riot of colour, but even that is beyond me.

Mum and Dad are decorating the house at the moment and I was more inclined to YouTube a video of their paint drying than to blog about my days in hospital.

Hence, you’ll gather, the lack of updates this week.

Happily, I’m now back residing in my own house with real, important things to blog about.

For instance, today I’ve had three cups of tea and I’ve had my glasses re-glazed with a new prescription so I can see when I’m driving.  I’ve also delivered a letter to the council regarding my benefits.

See – you’re life’s better for knowing all of that now, isn’t it?  Doesn’t it just fill you with that rush of enthusiastic, finger-on-the-pulse sense of truly politcally hot fresh news without which you’d be not only more ill-informed, but also a few minutes younger?

OK, so maybe my day’s still aren’t riotously crazily excitingly busy, but give me a break, I’ve only been back 24 hours.

Tomorrow is Shoot Day 1 of the Youth Theatre film shoot, which will go at the head of the show and is shaping up to be a draining but rewarding day, followed by a hectic week of organisation for Laughter For Life, which is now only 2 weeks away and COMPLETELY sold out!

Hospitals are rubbish, but they do one thing really well: make you better.  So now I’m better – in fact, flying high on top form, better than I’ve been for an exceedingly long time – and I’m breaking out into the world of doing things, achieving things and really getting a kick out of life.

Nothing happens in hospital, but it’s all go when you’re out!

I was convinced that this time round I was being a sensible, grown up, clever
boy in deciding to come into hospital for a stay on the ward for my second week
of IVs – its good for me, I know I need it and, well, its good for me.

What I’d also convinced myself was that it was going to be much much easier to
deal with coming into hospital having had it all pre-planned. 

It’s always rubbish and ever so slightly depressing coming in for a stay,
usually made worse by the fact that you’re not feeling great in the first place
and it normally comes as a bit of a shock when you think you’ve just popped in
for a clinic visit and they strap you to a bed..

So logic dictates that if you’re feeling ok to start with, as I am, and the stay
is pre-planned, as it was, then you shouldn’t struggle as much with admission.

But, as we all know by now, my logic is frequently fatally flawed – especially
when it comes to dictating what tricks my mind is going to play on me from
moment to moment.

So I spent last night and this morning in mopey-child mode, being generally glum
and po-faced at the prospect of losing my liberty.

It wasn’t helped by the fact that the ward phoned early to tell me not to come
because they didn’t have a bed for me yet, but to wait for a call to say it was
ok to come in.

It threw my carefully planned day off and led to a distinct raising of hopes
that they might in fact not find a bed for me at all and I’d get another night
at home. Or even better, if I stayed out Monday night I might be able to
convince them I didn’t really need to come in anyway and could avoid the stay
altogether.

I tried incredibly hard to ignore the persistant niggling hope that I’d get away
with it, but I was still decidedly deflated when I spoke to the ward just befor
4pm and they told me to come in.

If only I’d not phoned to jog their memory, who knows?

Luckily I’d been persuaded by K to listen to my more pessimistic (realistic)
instincts and had done most of my packing, but it was still a distinct struggle
to gather myself up and drive over to Oxford.

As it is, now I’m here, its really not as bad as I built it up to be in my head.
I know most of the staff so well now that they’re like friends and i’ve already
had one HCA tell me she heard me on the radio!

It’s much nicer on the ward here now since the move to their new building, with
en suite rooms which are actually nicer than some travelodges i’ve been to.

I also spoke to my bro, who’s decided that his motivation for getting through
this week of his commando course for the marines is going to be that no matter
how hard, cold and horrible things get for him this week, it could be worse: he
could be in hospital.

Which is funny because the thought struck me earlier that the way I’d get
through the week would be to remember that not matter how dull, lonely and
unhappy this week gets in hospital, it could be worse: I could be on dartmoor in
the cold and the wind and the rain on the commando course.

I think my bro and I maybe the perfect yin-yang.

So, note to self for the future: just because you plan it doesn’t always make it
easier to deal with. But just because you dread it doesn’t always make it as bad
as you expect.

I did it!! I actually managed to go out on a Saturday night without a) running out of steam after half-an-hour, b) not being able to get out of bed the next morning and c) feeling too self-conscious about wearing my O2 while I was out.

It’s a big step for me, really, and I’m really happy this morning. It was K’s Dad’s 60th this week and the whole family (the 4 off-spring and relevent +1’s) headed out to Sam and Maxie’s, a new place in the “Hub” where the new business/hotel-type district of MK is going up.

If I’m honest, I’ve been fretting about it on and off all week, what with my somewhat unpredicatable blowers and anti-biotic reactions at the moment, because I really wanted to be there and share the night with the rest of the family. K and I have known each other for a long time, and I’ve known her family for most of our friendship, but it was also the first time I was joining up with a full family gathering as “one of them” and I really didn’t want to have to bail out because my chest was being beligerent
(sorry, Nick, but it is in the dictionary if you want to check…).

It’s probably going to sound funny to people who know me, but last night really did feel like a bit of a watershed moment for me – like I was being welcomed into the family. There was no fanfare or special treatment or anything like that, but just that feeling of comfort you get when you stop worrying about whether or not everyone is really happy that you’re there and accept that it really does appear that they can tolerate your company.

Of course, it was helped hugely by being able to bribe the twins round to my side my being a taxi, but you never get anywhere in life without the odd backhander, eh?

But I think most importantly for me last night, helped by feeling welcome and comfortable, was that I managed to get through the whole thing without worrying about how I was feeling. I seemed to have the perfect energy levels for the night. I didn’t arrive home exhausted, nor did I feel that I had to not do something because I wasn’t up to it.

I was about to say that I suppose that sitting in a restaurant having dinner isn’t too taxing, so I shouldn’t really make a fuss, but actually, on reflection, it shows how far I’ve come in my recovery since before Christmas that my mind is working like that. Back in November/December, the idea of spending 3 hours sat in a restaurant, oxygen or no oxygen would have been enough to send me to bed to sleep for a week – so it really is a big deal for me to have got through it.

It’s funny how these little victories often nearly go unnoticed and it’s one of the things I love about doing this blog. In the same way I said when I started out that I hoped writing it all down would encourage me to see the wood for the trees and not get bogged down in hard times, but remember to keep smiling, I think it helps me not to overlook the upsides which might otherwise get glossed over.

Whatever way you look at it, I’ve come a long way since the turn of the year – like any period in life it’s had it’s ups and downs, but it’s worth reminding myself that I’ve done some amazing things and I’m doing better than I perhaps would have hoped in terms of moving forward both physically and mentally.

A week in hospital for respite pre-show this week should also do me a lot of good and although I know I’m not going to like it much when I’m there, it’s been reassuring to have the knowledge of an impending stay to let me prepare for it, rather than the usual course of getting it hoisted on me when I’m at my lowest.

The next week can’t really go quick enough, but at least I’m on a high going into it, which should stand me in good stead for keeping my spirits up through it.

Have I mentioned in the last week or so how much IV’s annoy me? Methinks once or twice…

Yesterday was a really good day – I didn’t sleep very well, but I re-organised my drug schedule to get me out of bed at 8am instead of 6am, which meant I could get up and start my day immediately, rather than going back to bed after an hour when my drugs were done and sleeping till noon.

It also worked well because it let me take my catch-up sleep (that’s just me trying to avoid the wword “nap” really) straight after lunch, before my afternoon dose, rather than having to wait till after it and then sleeping too late into the afternoon, which in turn appeared to be disrupting my night-time sleep pattern.

Not only did it seem to work pretty well, the new schedule, but it also seemed to give me a lot more energy and get-up-and-go and as a result I had an enormously productive day, leathering through work on the new CF Talk, Laughter for Life and the Activ8 Show, all of which had been somewhat neglected over the previous week.

Having gone to bed tired and ready to sleep after my late dose last night, I was eagerly anticipating a good night’s sleep (which I got – YAY!) and another energy-filled, super-productive day. I was even starting to plan my to-do list for the day as I drifted off.

But high doses of wapping strength drugs will go and do odd things to your system. After a great night’s rest, I woke up not full of the bouncing, work-attacking energy with which I’d gone through Thursday, but with the apparent wakefulness of your average 3-toed Sloth, which saw me lumped on the sofa most of the morning working out how much of the to-do’s could be un-done for the day.

After lunch, I slept, again anticipating a post-snooze pick-up to revamp my day, but again seemed only to wake more tired than I had been when I went to sleep. Worse than that, though, was the fact that my brain saw fit to simply shut down and not operate for the rest of the day until about 9pm this evening.

I’ve thus spent almost all of the day/afternoon in a semi-comatose state on the sofa wondering where on earth all the energy and pizazz I discovered yesterday had gone.

It would appear that I’m back in the old give-and-take world of IV’s and energy which had me so frustrated in the run up to Christmas. As much as I want to be pushing myself forward and keeping ploughing on, I keep having to give in to my body and accept defeat on a day’s work.

If there were just some kind of indicator as to whether tomorrow was going to be better or worse, I think I could cope with it easier – it’s the apparent lottery of energy levels that’s really riling me at the moment.

I suppose I just have to look at it from the point of view that it makes each day more interesting and exciting because I never know what’s going to get thrown at me: perhaps there’ll be something new to spur me on tomorrow, or maybe I’ll be finding new depths of reserves to drag myself through the day. Who knows? Isn’t it fun?!

Today has been, frankly, a pretty rubbish day.

Yet again last night my drugs and brain conspired to keep me awake almost the whole way through the night,  letting me finally drift off for more than an hour just before my 6am alarm call for my morning IV’s, followed by my usually solid sleep-time of 7-11am being interrupted by phone calls, deliveries and other distractions.

So a bad start to a long day as it was, which put me in a less than fabulous mood for the rest of it, which in turn annoyed me because my cousin Katie was down from Brum to catch a show at the Theatre and we were planning on having a bit of a day of it.

As it was, I could hardly muster the energy to entertain, although we did have a good chat and a cracking Game of Life with K (which I won, natch…).  But I still had to collapse into bed mid-afternoon to catch up on sleeps.

My body was simply not keen to play ball today though and stubbornly refused to wake itself up from my nap, which dragged me further into struggles for general awake/happiness.

The thought of getting through an hour and a half’s work session was, I have to admit, less than appealing, so it came as some relief when Rheya phoned to pass a message from Suze to say that since most of my group weren’t in for tonight, it made more sense for me to stay at home, so I delivered Katie to the Theatre and sorted her tickets before heading straight back home.

No sooner was I back than my chest started playing silly buggers again and givingg me all sorts of grief – mostly muscle-related pain, I think, from where I’ve been sleeping and holding myself a little strangely due to the IV access in my shoulder.

Being both exhausted and in pain is never a great modd-enhancing combo, so I was getting spectacularly downbeat and po-faced when I discovered perhaps the funniest thing I’ve seen on TV in a long time.

Curled up in bed with K, we flicked onto Never Mind The Buzzcocks and I laughed so hard I’m sure the pain from my chest has migrated to my stomach.

I’ve really no idea who Donny Tourettes is – or even if I’ve got his name right – but he made for some of the most unintentionally hilarious TV viewing since You’ve Been Framed made people laugh.

Watching Bill Bailey and Simon Amstell (both newly minted personal heroes of mine) ripping into Donny’s bizarre attempts at either rebellion or humour, coupled with his own self-image of sex-god punk rockstar out to diss the world had me doubled over in laughter and nearly falling off the bed.

It goes to prove that no matter how lousy things get, I was right all along when I said that the only way to deal with the tough times is to smile through it.

God bless you, Buzzcocks.

IV’s are great because a) they keep you alive longer than you otherwise would manage and b) …… well, I think (a)’s pretty convincing so I guess it’ll have to do.

On the other hand, the list of why IV’s suck is much, much longer.

This time, top of my “Why I loathe IV’s” list is the unfortunate and highly rubbish side-effects that my Meropenem (drug) is having on me.  Now, I have a bit of a history with Mero (as with many of the drugs I take), mostly that it gives me hugely painful joints and muscles, but we have discovered that a short course of steroids to coincide with the Mero seems to do the trick in aleviating the pains.

Not so much this time, though.  Although I am doing better than I have been, it’s still giving me the weirdest and most annoying pain in my right hand.  It’s not even that it’s particularly excruciating, it’s just almost permenantly there and refuses to go away.  But since it’s only in my right hand, it seems a bit silly to moan about it.

I did check in with my friendly family on-call doc (my all-knowing Aunt) who looked it up on the web and assured me that it wasn’t doing me any harm, but probably lots of good and to persevere with it, which I have.

The hand aside, I’m also suffering the simple and commonly-acknowledged IV slowdown – the high doses of super-powerful antibiotics being a good stimulant of sleep and restfulness.  The only issue being my body seems to have set itself on the weirdest clock at the moment, not letting me sleep till the early hours of the morning, then letting me be deceived into thinking I’m wide awake in the middle of the day until it hijacks me and cuts off all brain and motor-function mid-afternoon and forces more sleep on me.

It’s weird this IV lark, and you’d have thought I’d have got used to it by now, after regular courses 5-6 times a year for the past goodness knows how long – but I still seem to be taken by surprise when it knocks me for six the next time I’m on them.

Still, I’m booked in for a week of rest and extra-physio (although I’m not sure the two necessarily go together…) in the Churchill next week, so hopefully I’ll have a storming second week and come out of it in tip-top fighting form for the big Laughter for Life publicity push and the run up to the show.

Not to mention getting the new issue of CF Talk off to the designers and shooting 2 days of video for the Activ8 Youth Theatre show.

IV’s may suck, but in the long run they let you do the things you want.