Archives: Hospital

…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.

Amid all the hullabaloo (gotta love that word – never thought I’d use it here!) surrounding L4L, I have actually been looking after myself, too, you’ll be pleased to hear.

In fact, I was booked for a check-up at clinic today.  I popped along, with K in tow for waiting-room entertainment, and saw all the necessaaries, who all seemed to be buzzing about my appearance on Radio 4 and/or the upcoming gig.  It was almost like a taste of celebrity…

But most importantly, things went really well.  Off to a cracking start when I weighted in at 52.6kg – the heaviest I think I’ve ever been at clinic.  According to my notes I’ve put on a kilo and a half in a month – pretty good going!  Especially considering a week of that was spent in hospital, where eating enough calories in a day is more like a carefully managed game of skill than a diet-plan.

While I was up there, since I was due to start back on my TOBI neb (a nebulised form of the antibiotic Tobramycin), I asked them to do a check on my lung-function before and after, as the last couple of months I’ve had of TOBI (it’s taken on a month-on, month-off basis) I’ve noticed my chest getting tight after a dose and I wanted to check it out.

Sure enough, my before and after L-F showed a drop from 0.7/1.4 to 0.6/1.3, which doesn’t appear overly significant, until you work out that actually what shows up as a 0.1litre change on paper calculates to a 14% drop in the “real world”.  And I challenge anyone to lose nearly a 7th of thier lung capacity and not notice.

So after a quick conflab, the powers that be (that’s my CF nurse and Doc B) sent an order to pop me on a ventolin neb to see if it would relax my airways back from the TOBI.

I haven’t taken ventolin in years, and even then it was only as an inhalor, not nebulised, so I don’t have a great deal of experience with it and didn’t know what to expect.

What I didn’t expect – at all – was to find that after a single 2.5mg dose, my L-F jumped to an eye-watering 0.9/1.6 – a scale I’ve not reached in over a year!

To say I was happy is to do understatment a disservice – it’s unbelieveable that a quick 2 minute neb can make such a difference to my breathing.  But more than just the numbers on the page, I really noticed it in my freedom and ability to breathe and walk and just generally not feel breathless.

In  fact, there’s a good story that will show you how good it was.  When I got up to leave the ward after the trial, I switched from the hospital-plugged oxygen supply back to my walkabout tank and wandered up the corridor to Pharmacy, from where I then walked back to the car with K, had a 5 minute telephone conversation, walked back to pharmacy, returned to the car and then popped quickly back inside for a pit-stop before we left.

When I finally got back to the car and switched to my “driving cylinder” (long story), I discovered that I’d forgotten to turn my walkabout cylinder on when I left the ward.  So I’d spent the best part of 45 minutes walking up and down and all over without once noticing a shortness of breathe and questioning my oxygen supply.  What’s more, I actually remember noting to myself how I seemed to be walking faster than I normally would without noticing any adverse effects.

You don’t get much better than that.   Consider me not only well chuffed with my day’s activities, but on a personal high both physically and mentally.  Things have a way of turning themselves on their head – it only takes a bit of positivity and something to add a bit of meaning and purpose to your life.

Blimey, life moves at a hundred miles an hour sometimes, doesn’t it?

A friend asked me the otheer day how I think of things to put in this blog everyday – and I have to admit sometimes it does seem a little pointless to be writing when nothing much has happened.

And then you get days like today, where it’s ALL happened!

It all kicked off at 10am this morning when the phone woke us up.  Until today, I’ve been up and about by 8.30am every day for over 2 weeks – completely naturally, waking of my own accord.  But the first day I sleep in, it all kicks off.

Steve from Tin Racr Design was on the phone, asking if I’d got his proof of the programme through yet, which I had to confess I’d not seen because I wasn’t out of bed.  Hastily rolling out of bed, I plonked myself in front of the computer and checked my mails to discover not just the proof, but also an email from the printers we thought were handling the printing for us saying they could no longer do it.

To say I panicked would be overstating it slightly – I’m not really a panicky person –  but let’s say my calm took a bit of a dent.  Rolling K out of bed, I thrust the phone, a yellow pages and an outline of what we needed into her hands and got her dialling while I jumped on the job of proof-reading the awesome-looking programme.

In the middle of the chaos, other emails kept firing in from various sources, all seemingly demanding instant attention.  I can go days without getting any emails (well, ok, not at the moment) and usually you can sort them into various piles of urgency, but almost every one that came through today seemed to need an immediate response.

Understandably, with all my activity and the prospect of an exhausting rehearsal session at the Theatre tonight still to come, K was getting anxious that I pace myself and make sure I was keeping enough in my tank.

I pride myself on working well under pressure and although I had a couple of moments of dread at points today, I managed not only to address everything I needed to, but also to make sure I had enough time to have a proper lunch and take time to lie down in the afternoon to recharge before work.

As well as signing off on the programme, today has seen me: get hold of a follow-spot for the show, finalise two auction lots, get a sponsor for the programme (the legendary Dunham’s Solicitors in MK), confirm all the technical details with the venue and recruit a stage manager to handle the back-stage organisation for the show (well, nearly recruit, anyway, as it’s dependent on getting hold of someone else first – but we’re nearly there).

Not only that, but I’ve had a three-hour rehearsal at MKT for the Youth Theatre show, including an hour-and-a-half working solely with my three wonderful Hamlet cast members who have taken to the whole thing so much better than I could possibly have hoped.

Shakespeare is not an easy thing to grasp and there’s a lot of nuance and little touches to the text which can take an age to go over and discover in the rehearsal process.  I was so happy tonight to find that the cast have already got a good grasp of the text, but also that they are keen to share ideas and work with me and with each other to find a balance between their characters.

It’s been a long time since I’ve worked specifically as a director in a rehearsal setting and it felt great to be putting something together again – I realised tonight just how much I miss that area of the Theatre and how much more I want to do down that avenue.

On top of which, I also delivered the final part of the piece I’ve written to open the first and second acts of the show and it went down really well with the cast, which is always a good place to start.  I was concerned it might need a bit of redrafting, which would have been a headache considering how limited the rehearsal time now is, but it’s actually looking like it’s going to be OK as-is.

And now I find myself back home in front of my inbox again (with another 12 emails come through since I left the house at 5.30 tonight) and discovering a whole new load of greatness to polish off my day.

We’ve got some really good media interest, which will hopefully convert into coverage, and a few more pieces of the auction have fallen into place – including securing a workshop for people to see behind the scenes on Avenue Q, which I’m so insanely excited about it’s funny.

I’m now tired enough to go to sleep almost immediately, but I’m also pleased that I don’t feel totally exhausted.  I suppose the true measure is going to be how I feel when I roll out of bed and drag myself over to Oxford for clinic in the morning, but I think I’ve got the Big Guy on my side this week and he’s making sure I’ve got the fuel inside to see me through the weekend.

That said, I’m not taking anything for granted: I know I have to look after myself and pace myself or I’m not going to be able to make the most of what’s going to be one of the best night’s of my life.

Four days and counting!

I’m always loathe to jump up and down and rave about having a good few days without any enforced bouts of bed rest.  Well, let’s face it, I’m always loathe to jump up and down full stop any more.  All right, I’ve ALWAYS been loathe to jump up and down.  Even when I could.

Still, it seems that the last few days have been particularly encouraging for me – a full day’s shooting all day Saturday, a nice, restful Sunday which still managed to include a trip to K’s parent’s for a lovely Sunday/Brithday lunch for her Mum and a middlingly-active day today getting K sorted for her new job and fixed up with sexy new specs.

I seem – seem – to have found a nice equilibrium with my energy levels for the moment – succeeding in balancing a need for restful periods with achieving the most important goals of the day without running myself completely into the ground.

I’m hesitant to be fully excited until I get a couple of days further into the week with no repercussions, but so far, so good.

The day’s shooting on Saturday was really good fun.  Although we had quite a bit of time pressure to ensure we were out of the public areas of the Theatre by the time the matinee audience came in, we actually got all of the stuff we wanted relatively quickly and with very few hiccups.

We did, unfortunately, realise later that we’d miss-shot one scene and made a fatal error known in the trade as “crossing the line”.  This is far too hideously boring to explain in full to anyone not familiar with the term, as it’s a bit of a pedantic, anally retentive technical thingy to look out for, but unfortunately it’s one thing that can completely ruin a film when it’s all cut together.  Most of an audience would never be able to point it out, but would undoubtedly know there’s something wrong with what their watching.

Luckily for us, the scene in question with the minorly-major technical hiccup (or f**k up, depending on your view) is one which we still have to shoot a couple of additional shots for, so shouldn’t be too much of a problem to go back and rectify.  Fingers crossed.

Today I spent another morning in front of a camera, this time giving an interview for a student film for Bournemouth  University’s journalism programme about transplant and life on the list, as well as what can be done to increase donor rates.

It’s nothing major, but I was put in touch with the filmmaker through UK Transplant and as I said at the time I agreed to it, any publicity is good publicity.  I think it’s particularly good because there’s a chance it’ll be seen by a good number of students at the uni and that the message it sends out will get through to one of the most campaign-aware sectors of the population.

There’s huge amounts of resources sitting around university campuses in way of students who can be incredibly vocal about any subject close to their heart.  Make just a few of them aware of the importance of having people signed up to the organ donor register and there could be a whole new wave of Live Life Then Give Life supporters coming through the system and shouting louder than we have before.

Arrangements continue apace for Laughter for Life and I’ve spent a large chunk of the day on the phone to various people and rapidly swapping emails to finalise press strategy for the week, with local MK releases going out tomorrow.  Our national campaign should begin in earnest this week, too, although we’re a little disappointed that Bill’s not able to help us with shouting from the rooftops due to his already manic schedule.

That said, we’ve got an entire 3-hour gig lined up for Sunday night with some of the countries top comedians donating their time for nothing and for which we’ve already sold out a 600-seat Theatre, so it’s pretty hard to be unhappy about anything!

Here’s hoping the rest of the week stays as smooth as today.  We’ve got a few auction lots to finalise and gather, as well as the press and media work to cover.  I’ve got some technical gubbins to double check and artists to liase with.  We’ve got an auction to plan and sales to figure out, and I don’t even know what I’m wearing yet!

Gosh, it’s all go!

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.

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.

After my somewhat self-pitiful mini-rant last week I seem to have slightly dropped the blogging ball and not had a proper update – the longest I’ve gone without an update since I started this blog I think.

I blame many things – anything really that absolves me from accusations of being too damn lazy/forgetful to write something interesting on here – and deny all such mutterings from the kids in the back.

Still, things have picked up mightily since last Thursday – I knew it would only be a blip, and it was, albeit a two-dayer, but a blip none the less. I struggled for a couple of days to shake of the negative thoughts and not-so-nice images in my head, but I’ve got a pretty good daemon fighter in my head after all these years, so I get back on top of things pretty quickly.

This weekend was a weird one, because I had lots to do but couldn’t escape the fact that during the week I’d actually been far too busy and needed to take a bit of time to myself to make sure that I stopped myself from sliding down hill.

I headed to Oxford on Friday to see my physio and we made plans with my CF nurse to start a course of IV’s at the end of this week. They wanted me to come in, onto the ward, for the first week of the course, but I managed to negotiate a stay of execution until the week after to ensure that I didn’t have to miss another week of work. (I’ll now be in hospital for half-term week, so not nearly as bad as going in next week).

It also means that I can still attend the meeting I’ve been invited to at the Department of Health next Tuesday, the subject of which is sadly under wraps at the moment, but I’m sure I’ll fill you in on at a later date.

Today, however, I was coincidentally down at the DoH as well, meeting with the team who deal with oxygen provision to discuss the problems that I and other PWCF have been having with the home oxygen service, mostly with relation to Allied Respiratory.

It had originally been scheduled as a meeting between all three sides, but in the end the decision was taken by the DoH to have a separate meeting with Allied, which the CF Trust will also do, to air the concerns directly.

The purpose of today’s meeting was to express as clearly as we could the importance of so-called abulatory oxygen to PWCF and their needs for portable O2.

It was actually a really positive meeting, with the two representatives of the DoH really keen to take everything on board and correct things. It’s fair to say that things are a good dal better with Allied than they were even 3 months ago when I first started using them, but it’s important for the issues that did come up to be properly looked at to ensure nothing like that happens again.

I’m confident following the meeting that good things will come from it, including a commitment to looking at lighter, more portable forms of oxygen to make getting out and about easier for people like me who find the cylinders a weight.

I also hope that the feedback with regards to customer service is picked up on and driven home to the company, because their staff training is simply appalling.

The meeting did exhaust me, though, so it’s an early night and restful day tomorrow on the cards.