Monthly Archives: July 2007

What seems to consume me more than anything else at the moment is an overwhelming desire to “do” something – anything really. I spend so much of my time sitting around, either watching TV or surfing the internet looking for articles and information which may interest, entertain or educate me that I just crave the normality of “doing” something.

It doesn’t help that my favourite films and TV shows are ones showing people with high-powered, mile-a-minute jobs which demand 100% attention from them at all hours of the day. I think I’m a frustrated workaholic. There’s so much I want to be doing which I just can’t do because my energy reserves are lower than an Iraqi oil refinery once the US has taken it’s “share” from the depot.

It’s one of the sillier frustrations with my life and I suppose it’s only natural when one is confined within the same four walls 24/7 with barely a break for air. I guess it’s also the attraction of being well enough not to have to think about whether I’ve got enough energy or if I’m well enough to do a job or make a trip or take a meeting – a pleasure I’ve not enjoyed for a good few years now.

When I think about it, my situation now isn’t all that different to how it was a few years ago, it’s just that all my timescales have telescoped. Whereas when I was at work I had to think about whether I had enough energy to do something on both Tuesday and Wednesday, I now have to wonder whether I can do something at 10am and 11am. All that’s changed is the timescale and the size of the task.

When you look at it like that, it takes away a touch of the rougher side of life. It’s all too easy to dwell on the things you miss most when you’re pretty much invalided out of life. But making the fight seem familiar somehow lessens the blow and makes things more comprehensible, even if it doesn’t necessarily make them any better.

It’s all about perception – something I know I’ve written about on here more than once – and the advantage of perception is also its curse, namely that it’s easy to have when you’re feeling OK, but it’s the first thing to abandon you when you start to slide backwards.

Here’s hoping I can cling to this little slice of perceptive thinking for at least a few days and keep myself in an upbeat mood. I much prefer me when I’m like this.

The funny thing about not doing very much is that when things do happen in your day, it makes them seem like a much bigger deal than perhaps they would seem on another day.

On the other hand, the ups and downs are coming in so thick and fast at the moment that I don’t really know what to do with myself at some points. Most weeks seem to end with an interesting good news/bad news summary for the week, although I try not to dwell on that too much lest the knowledge that the week contained more of the latter than the former start to drag me down again.

Then you get days like today, when the good news/bad news cycle suddenly notches up a gear and starts flying along quicker than a steroid-powered rider in the Tour de France.

I woke up this morning just before 9am, a good average morning wake up time, feeling pretty good. After doing my nebs and physio, I’d noticeably slowed down a good chunk and was feeling a distinct lack of energy. Immediately, my head starts to worry about how much of a struggle today is going to be.

Luckily for me, I didn’t have that much time to dwell on my thoughts because for three quarters of an hour between 11am and 11.45am, the phone didn’t stop ringing. If you want a clearer demonstration of a good news/bad news day, you’ll have to search long and hard. Although it was really bad news/good news. The phone calls went as follows:

– Lisa, my nurse from the Churchill in Oxford calls and tells me that the result from my Glucose Tolerance test in my annual review was high, a possible indicator of the beginning of CF-related diabetes (CFRD), more on which later, but suffice to say it didn’t put a smile on my face. She’s going to try to find me a blood sugar testing kit for me to monitor my sugars for a couple of weeks before my next clinic visit on 2nd August to see what’s going on.

– Mum phones. Tell her why I’m not sounding over-joyed. She tells me not to worry about the GTT. Immediately, it makes me worry. Mum only tells you not to worry when there’s something to worry about (or at least only says it in that tone of voice where she doesn’t sound entirely convinced there’s nothing to worry about). Tells me my Grandpa is up for the weekend if I want to come over and I’m left to ponder if I’ll have the energy to make a trip to Mum and Dad’s to see him.

– Emma calls to tell me that the Daily Mirror want to run a feature on me and Robyn, who is also currently waiting for a double lung transplant and also has CF, and is currently the face of National Transplant Week. She asks if I’d be interested. I know it’s not really a question because she knows how much of a media monkey I am. She has to check with Robyn, too, but will get back to me.

– Emma calls again, Robyn’s on board, so she gives me the writer’s details.

– I phone the Daily Mirror writer and talk to her a bit about donation and things. The spread will form part of their One in a Million campaign, through which they’re aiming to sign up a million potential organ donors. We arrange a proper telephone interview for Monday morning and I pass her Robyn’s details.

– K phones from work after I text her about the Mirror piece. She’s excited (she tends to be more excited than me about pretty much everything, for which she thinks I’m rubbish) but can’t talk for long, so I don’t tell her about the GTT results.

The thing is, I don’t really know what to feel about the possibility of CFRD. What confuses me is that the perception of people being diagnosed with diabetes is that a massive blow and in some ways the end of life as they know it. Just think how many “Oh God, I’ve got diabetes” stories you see in medical dramas and other TV shows. Just this week, K and I watched an episode of Brothers and Sisters, the new Channel 4 show, in which the family’s life crumbles around a daughter’s diabetes diagnosis.

But at the same time, I know plenty of people – many of my friends – who have diabetes and CFRD and it makes no apparent difference to their lives. There are countless stories of people doing all sorts of things through diabetes – take Steve Redgrave, who won an Olympic medal while dealing with it.

So it seems like it shouldn’t be that big a deal, but at the same time I think my mind has been programmed into thinking it’s a nightmare.

I certainly don’t relish the thought of yet more drugs and treatments and things to think about during the day, but as Lisa said on the phone today, it may explain why recovery times seem to be longer at the moment. Perhaps getting my blood sugars under control – if indeed they are out of control, which we still don’t know for sure – will open the door to a more full-on recovery and bring back other little aspects of life I’d given up on for the time being, like popping out to the shops.

I suppose the biggest problem with having not very much to do all day is that it gives you a lot of time to dwell – to think on things for far too long, when in an otherwise active life, you’d have busied yourself with something that takes your mind off it. When you feel so short of energy that you can’t engage with anything, your mind is free to take itself off to all sorts of places you’d rather it didn’t go.

So I’m deciding for myself tonight that I will go to bed not focusing on the “maybes” of dubious GTT results, and instead relish the the thought of FINALLY getting to maych Emily by hitting the National Press. OK, I’m a long way behind her in media stardom for now, but I’ve got much more in my tank yet. Just you watch…

It’s been pointed out to me that my last post was a touch to the darker side of happiness and light.

In the spirit of remembering the title and inspiration of this blog, I wanted to post to clarify that I’m not living a world of utter blackness with no mirth or merriment whatsoever.

I’m not going to edit or delete my prior posting, because I stand by not only what I said but also the sentiments expressed in it.  However, I wanted to add that I can still see the funny side of life, swinging as I do from mood to mood like a restless teenage monkey trying to impress the girls with his feats of daring in the tree tops.

To illustrate the fact, I’ve just giggled my way through nearly all of Punch Drunk Love – I don’t mean I watched nearly all of it, I mean I was giggling at most of it, but not some parts (the bits that weren’t funny), because those of you who know me will know I can’t just watch a bit of a movie, it’s all or nothing.  You will also notice I’ve lost none of my pedantry in the process, either.

Still, I’ve just giggled my way through most of Punch Drunk Love, which would be a great illustration of my current access to the fun-sensors of my brain, were it not for the fact that only a very few people can I imagine extracting the same bizarre glee as I do from this quaint, weird, surreal little movie.

I would encourage all of you to go and seek it out to see what all the fuss is about (check out my ego too, thinking that my little mention in a blog which barely 100 people read counts as “all that fuss”), but I’m fairly sure that 90% of you (so, erm… 90 of you) would not only not see the same thing as I see in it, but in it’s place see something incredibly dull, surreal and very, very odd.

In fact, I think you might lynch me.  90’s a good number for a flash mob.

Anyway, I just thought I’d write and say, honestly, I’m OK, really.  Kind of.

Boy, annual reviews are depressing.

I’ve never liked the yearly MOT, ever since it was my only trudge over to Oxford every 12 months as part of my shared-care arrangement with Northampton Paediatric Unit (not an uncommon arrangement for PWCF, especially children), when it was marked with endless hors of waiting around and pointless questions from a doctor who you see but once a year but spends their brief meeting with you asking the sort of intimate question you’d struggle to find the courage – as a child/teenager – to answer your own doctor about.

Seriously, how many 14 year-old kids are going to sit in a consulting room with their Dad and answer anything but “No” when the doctor says, “do you smoke”?  Obviously, I never have, but there are those – even with CF – who do, and it is critical to their ongoing care that the doctors are aware of something like this.  Asking in front of Dad is not the way to go about finding out.

As the year’s have gone by, and the process has moved from being an annual schlep to Oxford to being just another clinic appointment with my adult team at the Churchill – and one that’s marked by a good deal less waiting and a good deal more friendliness – it’s taken on a paradoxically much more unpleasant feel to it.

If progress were marked on a chart – and with many areas of CF, it actually is – the over-riding theme of annual reviews is to watch the graph slip-sliding ever so slowly downwards in an ever-decreasing mountainside style.

This year, I suppose it reached it’s nadir – there isn’t a whole lot lower to go, and compared to last year, things look pretty (‘scuse the French) shite.  It’s hard to stay upbeat and positive when you’re looking back at a set of results which at the time were immensely disappointing, but for which now you’d give your proverbial eye teeth.

(By the way – can anyone tell me what eye teeth actually are and why they’re called that?  It’s dead confusing.  Answers on a postcard, kudos as a prize…)

There are moments of levity in the experience, though, things which I suppose I must cling to, although all of them come firmly in the category of “if you don’t laugh you’ll cry”.

Take the psychological survey, for instance, an 8 page document quizzing you on how CF affects your quality of life (or QOL as they like to put it), with the kind of inane multiplle choice answer boxes like A Lot, Not Much, A Bit, Not Really.

“Does CF affect your day-to-day life?”,  “Does CF prevent you from doing the things you want to do?”, “Does CF affect your relationships?”.  A monkey could answer these for me right now.

What did make my nurses laugh, though, was my minor fit of pique whereby I simply crossed out the entire section devoted to “social life and socialising”.  I wish.

I now have to wait a few weeks and head back for an ultrasound scan and then to see my doctors, who will have all of my results and can sit down and take me through them.  Can’t wait for that day – it should be a barrel of laughs.

Anyway, I’ve had enough of bleating about the awfulness of annual reviews, my chest and my life at the moment – I’m going to go and plonk myself on the sofa in front of a good movie and forget about everything.  Until I remember it again…

It would appear that my Monday was, in fact, a delayed Sunday (or a British Rail Sunday, as I prefer to call it), bringing with it as it did all of the slowed-down, energy-less deflation that I was expecting to get as a hangover from my Brummy exertions.

I haven’t been feeling completely rubbish, but it was certainly a LOT harder to get up and out of bed this morning than it has been for the last week or so.

A good session of physio once I had managed to get up and about seemed to sort things out, but I took the day very easy anyway, spending most of it on the sofa watching the extras on my King Kong DVD (have been totally addicted to the superb production diaries) and getting through 3 episodes of the first season of Entourage, a show which managed to sneak under my radar but which is brilliantly my kind of thing, following as it does the path of a Hollywood actor and his close-knit bunch of friends. Aspirational TV, I guess you could call it.

Once my batteries were sufficiently DVD-charged, I did manage to plonk my butt down in the study and get some work done, reviewing pages for the new issue of CF Talk and responding to some emails which have been hanging around for my attention for a while.

Also had to tune in to Richard & Judy this evening to catch the ever-wonderful Emily turning on the charm for Mr & Mrs daytime (or is it prime-time?) TV, along with her charming and incredibly open mother, whom I like to call Mrs T. Using footage from the various interviews they’ve done with Emily over years, pre- and immediately post-transplant, I have yet to see a more convincing advert for the benefits of organ donation that seeing the contrast in Emily in those films.

The thought of the immense and immeasurable ways in which my life could change with just one phone call is at once hugely exciting and tremendously saddening. It is impossible to see into the future and to know what lies in store for me, but the thought of such amazing, intangible possibilities sitting so close but so very far from reach is a hard one to reconcile in one’s mind.

It’s a process in which I feel like a terrified passenger, willing the runaway train to stay on track and ease into the station set for new life, whilst all the while knowing that one little bump will send it hurtling off the rails.

How do you live your life from day-to-day with something like that hanging over your head? I’m not sure even I know, except to say that if I wasn’t living it, then there’d be no point waiting for the transplant, I guess.

So, for those of you who are in touch with the Big Man Upstairs, now’s the time to get on your knees, bow your heads or do whatever comes most naturally to you when you pray and ask Him to bless me with a second chance. And for those of you who don’t believe, well, maybe He’d like to hear from you, too.

Woke up this morning later than I have been – all of 9.30am – fully expecting to feel worse than horrible and was surprise (and delighted) to discover I didn’t.

In fact, I felt as good if not better than I had the previous morning.  No complaints from me on that one.  I was a little bit more chesty than I have been, but I think that’s down to not getting as long a session of physio in last night as I would usually do, largely due to being so shattered from the day.

I’ve spent the day on the sofa doing next to nothing – watched the British Grand Prix and then realised that all through this season I’ve sat and watched races, only to remember with a quarter of the race to go that I really don’t like F1 anymore because it’s so chuffing dull.  When the only time cars overtake each other is when one of them stops for petrol, you know you’ve got a problem with your sport, surely?

I remember the olden days when the cars used to drive quite close together and every now and again one of them would try to get past another one IN A CORNER – oh, the memories.  I still have no idea why I sat through all 60 laps of today’s GP other than using the excuse that I was deliberately trying to do nothing.

My dad has it right – he Sky+’s most of the races, and then zips through them at x6 speed, which is much more interesting.

To break from the sporting tedium, we sat and watched The Queen this evening, which was entertaining, but no where near as grand as it’s been reported to be.  Helen Mirren is outstanding, but the script is INCREDIBLY clunky in the first 10-15 minutes where the filmmakers are clearly working over-time to make sure that all the Americans who want to watch the film are up to speed with how our country works with the monarchy, the Prime Minister and all the rest of our constitutional gubbins.

It’s hideously badly handled, although I suppose the defence would be that it had to be shoe-horned in to make the film make sense to the foreign markets.  I still think there are other ways of doing it, though.

The cast are generally very good, although some veer towards the bad side of impressionism and caricature,  and the idea of a peering into the Royal household at such a difficult time is intriguing, even if some of the scenarios they come up with stretch the bounds of believability a little.

I was worth seeing to see what all the fuss was about, but I wouldn’t rush out to pick myself up a copy (our copy being a lovefilm rental).

Hoping for an early night tonight, although with my brain running the way it does at the moment, I’ll be wide awake again come 8.30 and it’ll take me till midnight to feel sleepy again.

So it turned out that my chest decided not to try any last minute histrionics and I did make it up to Birmingham today.

I’m sure there will be much amusing cross-bloggage between myself, Emily and Emma on the subject, but since I appear to have got here first, I’ll be popping my smug face on. Or possibly reflecting on the fact that they clearly have better things to do with their Saturday nights than sit in front of their computer detailing their day. Ho hum.

Today saw the beginning of National Transplant Week, which runs until next Saturday, and to mark the occasion the Live Life Then Give Life team assembled in Victoria Square in Birmingham to create the world’s biggest Loveheart (you know, those little hard sweets with “Date me” or “Sexy” written in the middle).

The idea was to create a 1 metre wide version, which, when finally calculated, required a massive 70kg of icing, which all had to be rolled out, dyed, plastered together in a neat round shape, then have the heart-shape and letters spelling out the organ donation line phone number placed on top.

Due to the hugely limited reserves of energy I have now, however, most of the fun of the day was off-limits to me, with my arrival timed to coincide with the completion of the finished loveheart around 3pm, when we hoped to have some press along to mark the occasion.

Mum and Dad drove over and collected K and me just after 1pm and we headed up the M1 to Birmingham in really good time, car loaded down with my newly acquired wheelchair, plenty of spare oxygen, a snack-box of energy-boosters and spare bits and pieces like paracetamol, which I’ve found immensely useful in recent weeks for calming hyper-active chest flaring moments.

I have to confess that I was pretty nervous going out of the house today. Things can change so rapidly from moment to moment with my chest at the moment that the prospect of traveling quite so far from the relative comfort and safety of home, where my bed and Neve are always to hand, concerned me. The prospect of getting into difficulties in a car on the motorway filled me with a kind of nervousness I’ve not experienced before and it really threw me off.

That said, it was a really wonderful afternoon – everyone there was so fun and friendly. I saw a few faces I’d met previously at Laughter for Life and met a few people who I’ve only had contact with via email and message boards up to now.

It was fantastic to be out in the open air and having some fun with people, compared to my usual life at the moment of sitting around at home doing hardly anything at all. The daily grind of nebs, physio, more nebs, resting, nebbing, physioing and on and on in a loop is brought into focus by a break from routine like today.

My chest behaved admirably. Once we got home it gave only the mildest of complaints, letting me know that it had done quite enough for the day, thank you very much, but not ranting and raving about it as it sometimes deems necessary.

I’ve been pretty spectacularly tired all evening, but have forced myself to stay awake so I get a good night’s sleep tonight, which I’m now assured of, so I’m going to whisk myself off to hit the hay and catch up on other things tomorrow.

Thanks to everyone who helped out today, and to everyone who popped down to say hello. We made an odd sight in the centre of Birmingham, standing over a giant sweet in various random states of hilarity and occasional fits of giggles, but we made contact with a lot of people and passed on the message of organ donation, which is what this week (and our campaign) is all about.

One of the joys of finally being off IVs is not having the alarm blare at 8 o’clock every morning to get you up and out of bed to do your morning dose.  Annoyingly, my body seems to have seen fit to re-set it’s internal clock to keep raising me from my slumber sometime near or just after 8am anyway, as if I’ll miss out on something important if I don’t.  Regardless, it’s still nice not to be woken by an alarm, I suppose.

I had the BBC round today to do an interview for Look East, the local news bulletin for the Anglia region.  It was only a 2-man job, nothing big, with a reporter and a cameraman and took less than an hour from top to tail.

Interestingly, I didn’t feel even a touch of nerves today, which I normally get before any of the interviews I do, so I am forced to assume that my brain and nerve-ometer have come to the conclusion that once you’ve done live Radio 4, taped local news is nothing to be bothered about.

Not that I’m complaining at my head’s somewhat pompous stance – it makes interviews a whole lot easier and less tongue-twisty if you’re not feeling the nerves beforehand.  And in fact today I felt I gave on of the best interviews I’ve done – I covered all the bases clearly and succinctly and gave them lots of material to cut around, depending on what angle they wanted to take.

I was even pretty pleased with the final version which went out on in the 6.30pm programme tonight – it managed to put everything across well and didn’t rely too heavily on the kind of news-package cliche  coverage that usually gets shot for PWCF, although we did have to have the inevitable nebuliser shot.

The rest of the day has been spent trying to chill out and rest up in the hope of making it to Birmingham for the Live Life Then Give Life event in Victoria Square in the afternoon.  It’s frustrating not to know whether I’m going to be able to make it or not yet, but I can’t commit to anything when I have no idea how I’m going to feel from one morning to the next.

Most of the afternoon has been fine, although this evening my chest is feeling a bit tight and grumpy, so it’s anyone’s guess how I’ll be in the morning.  I’m hoping that it’s just a bit of tiredness creeping in and that once Neve takes over the leg-work of breathing for the night, I’ll be set for a trip out tomorrow.  We’ll have to wait and see.

As you may or may not know, next week is National Transplant Week, throughout which lots of various things will be happening to raise awareness of organ donation and suchlike.

Tomorrow morning I’m being interviewed by BBC Look East and the piece should run as part of their 6.30pm main evening news, all things being well, so those of you in the Eastern region, keep your eyes peeled for that.

With luck, I’ll have more media stuff going on throughout the week, too.  The local papers will pick up my story again, I hope, and also perhaps local radio, too.

Nationally, look out for Emily on Richard and Judy during the week, as well as a friend of mine called Robyn who will take Emily’s place on the GM:TV sofa as resident PWCF awaiting transplant – naturally I’d have been up for it, but I’m not a pretty girl, so I think that ruled me out…

For more information on Transplant Week, check out the Transplants in Mind and UK Transplant websites, as well as our very  own Live Life Then Give Life campaign, through which we will be targeting a whole host of local media across the country, and hopefully some national media, too.

So keep your eyes peeled in your local press for pics of attractive young people sporting their Live Life Then Give Life or their I’d Give You One T-shirts – and spread the word about organ donation to all around you.

Earlier this week I sat down with K to show her a film I thought she’d like that I’d caught on TV a while back and just picked up on DVD.

The Gathering Storm covers the year or so leading up to Winston Churchill’s re-appointment as First Lord of the Admiralty in 1935, during which time he tries in vain to convince his Parliamentary colleagues that Germany is re-arming itself for a war which no one else in Europe is prepared for.

It’s a fantastic film – an HBO/BBC co-production for television, not cinema release – with a marvelous central performance from Albert Finney and an eye-watering supporting cast.

What struck me, on watching it back again, though, was the reminder of how Churchill struggled with what the doctors called, “a certain melancholia” and what his family – most notably his wife, his adored Clemmie – called his Black Dog. Nowadays, of course, it would be called depression and he’d be on all manner of pills and psychological couches to come to terms with things, but this isn’t the time or the place for a detailed break-down of my personal feelings towards today’s current epidemic of depression.

I have, of late, felt myself under attack from the very same Black Dog as afflicted Churchill, I feel.

The analogy to a dog is remarkably accurate – it carries a life and a will of its own and it can come and go as quickly as the summer sun behind the clouds at Wimbledon. Like a dog, it can be docile and quiet one minute and turn unutterably savage the next: a constant threat hanging over you, but with no indication when or how long the next surge will come.

Today was very much a Black Dog Day. It seems at the moment that whenever my chest is less than perfect… hmm, no, that’s not the right way to put it, given that “perfect” is something my chest hasn’t been since my earliest years… but whenever my chest is a little worse than it was yesterday, or whenever I feel slightly more under the weather than I have been for the few days previously, the Dog attacks with a savagery I’ve never before experienced.

Yesterday was my last day of IVs for this course – normally a time of great celebration and a chance to enjoy a long, hot, refreshing shower (something I can’t do with my port accessed, so I have to settle for half-baths which don’t get my shoulder wet). This time round, however, I feel like I’m losing a crutch which I’ve been leaning and relying on to improve me.

I’ve been so used, over the years, to going down hill, having a course of IVs and pitching out the other end all fine and dandy, it’s an alien feeling to come to the end of a course of IVs as I have the last couple of times and still find my chest almost as clogged up as it was before, albeit with markedly less infection and with much thinner and more “friendly” sputum.

I think there’s a part of my brain which is still convinced that I’m not actually any better at all and that I should still be on the drugs, something which all medical evidence strongly contradicts. It is this nagging centre of the brain which I think is holding the leash for the Black Dog and sees fit to set him free at the merest hint of a down-turn.

I’ve had a few really good days since I arrived back at the flat almost a week ago. I’ve been getting stronger and feeling more upbeat than I have in a long time. So it’s all the more arresting when the Dog attacks as he did today.

As if lost in a cloud of darkness that envelops all around it, I found myself losing touch with myself and veering off down a course of negative thinking that I normally nip in the bud in seconds. And where I sit at the moment, once the cloud does descend, once the Dog has its teeth into me, there’s nothing can be said or done to clear the air or shake it off.

Strangely, the fog I found myself in for most of the afternoon suddenly lifted this evening. I strongly suspect it’s down to a fillip in my physical state, whereby my chest deigned to allow me out of bed without making all kinds of disagreeable noises and causing problems.

What I need to find is something that will disconnect my mind from my body – to keep my mental state separate from that of my physical. Because let’s face it, if I start to bottom out at the first sign of a little physical hurdle, I’m going to be fighting through far, far to many mental battles when I should be focusing all my energy on my physical ones.

Anyone know where I can buy a muzzle?