Monthly Archives: February 2007

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.

A while back at the start of the year, I was sent an email by the press officer at the CF Trust asking if I’d be willing to talk to Radio 4 about my diet and having to take on an inordinate number of calories everyday.  Being the self-confessed media tart (MT) that I am, I nearly bit her hand off.

Having spoken to one of the team on Radio 4’s Saturday Live show, I was told the following day that they’d decided not to go with that story, but that they’d keep my details on file for the future.

I didn’t realise that meant a matter of weeks – just last Thursday, JP from the show called me back to see if I was free to come to the studio in London to do a segment on the same subject with presenter Fi Glover and stick around for the whole show.

Excited doesn’t quite cover it from my side of things – I love the media: TV and radio have always intrigued and excited me and to think that I was stepping up for 2 minute 2-ways on local BBC 3 Counties to a show that people had actually heard of was unbelievable.

So I roused myself at 5.30am on Saturday morning and stumbled around to do my morning dose of IV’s before I left for the studio in my Dad-powered taxi at 6.45am.

I did manage to dose on the way down a little bit, but arrived at Broadcasting House – yes, THE Broadcasting House!!! – at 8.15am feeling every so slightly very nervous.  I’ve got so used to doing local radio and press that it didn’t occur to me how nervous I was going to get going on a big national radio station.

As it was, the whole thing was fab.  I was on the show with Fi, the presenter, the regular poet they have on every week, who was a really good giggle and an Asian music producer who was fascinating to talk to and is doing some really interesting work in fusing musical sounds and styles from all over the world.

My section of the show – which I think ran about 10 minutes, although I totally lost track of time – went really well, although I was annoyed with myself for tripping over my tongue at the beginning.  I covered all the bases they wanted covered for the piece and even managed to get in a plug for Live Life Then Give Life and organ donation in general.

The show is up on the website on listen again all week, so check it out – I’m  on from about 5 minutes in.  Click here.

Further to the on-air discussions. though, I also got chatting to Fi after the show about Laughter for Life and she has promised to help out with publicity if she can – passing our details to a FiveLive producer and to the London Radio listings people, which should carry a bit more weight than just randomly attacking them with a press release.

As exciting as it was, it has also made the start of IV’s even tougher going, since my body disagrees mightily with Meropenem anyway (the drug I’m on) and  adding into it early mornings and irregular sleep patterns doesn’t help.

I know I’m going to have to take a few days to recover, but annoyingly, it’s hard to tell how much of this is IV-related and how much is down to over-work/exhaustion.  If I knew that, I’d be able to look after myself a bit better and space my workload, but as it is I have to assume the worst and take it as easy as I can for the time being till things pick up again.

Still, I was on Radio 4!

Nothing like a break through in planning and organisation of a big project to stimulate the happiness and reenergise you (see – it’s not just the steroids…).  As of this moment, tickets for Laughter for Life, hosted by Bill Bailey and featuring Dara O’Briain, are ON SALE.  You can buy them here

This is undoubtedly the coolest thing to happen this week, and will totally keep me charged full of positive energy until at least six o’clock.  And then I’ll come back here, read my excitement and get excited again.

But you must HURRY, because this is a fabulous evening of hilarious comedy from fantastic comedians (and other such hyperbole) and it’s going to sell out fast with a capital FAST (not hyperbole, actually true).

So if you’re really my friend, buy some tickets, otherwise I won’t like you any more.  And if you want to be my friend, buy tickets and I promise I’ll like you.

So there.

Did I mention it would be funny….?