Archives: Work

Festive recovery is progressing well – I’ve had two complete days of doing very little-to-nothing and looking after myself and I’m feeling all the better for it.

I’ve got a voucher-splashing trip to Borders planned for the morning, under the guise of taking my Dad over to show him how fab it is, and I’ll be merrily spending my way through the delightful vouchers supplied by K’s big bro and troupe. (Happy now?;-).

I’m still not entirely firing on all cylinders, but I’m finding it much easier to get around at the moment – albeit always tied to an oxygen cylinder or concentrator – and I’m not nearly as breathless as I was yesterday or the day before, which goes to prove two things. 1) that doing plenty of physio and getting plenty of rest really works and 2) TOBI, the nebulised form of the Tobramycin anit-biotic, really does do it’s job spectacuarly well, as I only restarted it on Boxing day (it works on a month-on, month-off basis).

Also had an interesting conversation with O2 yesterday.  I’ve been thinking a lot about getting hold of a Blackberry phone/email device thingy, mostly because it’s a fair assumption that this year I’ll be spending a good deal more time in hospital and that being the case, it would be great to have access to my emails from my bed.  The hospital as it is doesn’t have workable or affordable internet access, so a Blackberry seems ideal.

What it would mean is that while I’m laid up with nothing much to do, not only can I carry on communicating with my friends without running up an insanely huge text message bill, but I can also carry on with most of the work I do for the Trust, which is handled largely through email with contributors, designers and the “bosses” there.

Now, I’ve seen a few really attractive deals on O2 for Blackberry Pearl phones and contracts to go with them, namely one which tell me that if you sign up to a £30+p/m voice contract and £10p/m Blackberry Tariff, you get the Pearl for free.

So I phoned and spoke to O2 customer services and told them that although I’m only 9 months into my current contract, I’d like to add the Blackberry Tariff and get the Pearl.  Fine, they said, that’ll be £220. 

Now, bearing in mind that the phone alone is advertised in Carphone Warehouse at the moment for £199, this didn’t seem like a fabulous offer.  I told them so.  They told me that since I’m not due an upgrade, there’s nothing they can do. 

I outlined my history with the company – loyal customer for over three years, no problems or complaints, no other issues – and suggested that perhaps, since I’m only 3 months away from the end of the contract, maybe they could budge a little on the price of the phone.  I didn’t say I wanted it free, just a little leeway on the £220.  But no, they don’t do it and no one there is authorised to.

So I thanked them politely and hung up, redialed and went through to the option on their phone menu saying “If you are less than happy”.  I outlined the situation again and got the same response – nothing they could do because I was outside the upgrade window.

At this point, having reiterated the fact that I’d been loyal for 4 years, never missed a payment, never raised a problem with them, never kicked up a fuss about anything, I let them know I was feeling like a mildly undervalued customer.

In fact, it had occurred to me whilst talking to them that it would be cheaper for me to go down to Carphone Warehouse, take out a new contract – on exactly the same terms as my current one – plus the Blackberry tariff, get the phone for free and pay out the remainder of my contract with them than it would be for me to get the Pearl through them.  I told them.

At this point he put me on hold and came back 5 minutes later telling me that having spoken to 2 different departments, the 2nd one told him that if I called them back on the 4th January, they would do the upgrade for me.  Just like that.

Interestingly, when I asked what department I needed to speak to when I called back, he told me it was the “Safe” department – the people you talk to when you say you want to cancel your contract.  So being a “valued” customer isn’t enough to get you benefits and deals as part of O2 – you really only matter when they think you’re going to defect to Vodafone or Orange.

Still, who am I to grumble, as of January I’ll be my own personal walking office – marvellous!

Today’s been a really good day for me and I’m really pleased with myself for it, too. 

Yesterday, apart from slumming it on the sofa trying to urge my chest pains to go away, I spent the afternoon writing another article for the Guardian’s Comment is Free site – this time about Transplantation.

Em and Em, the partners in crime behind Live Life Then Give Life (from whom you should all have bought a T-shirt, not to mention signed up to the Organ Donor Register), organised another big publicity push for Christmas, which I sadly missed out on because of all my recent email hiccups and account confusions.

So, in order to still be doing my part, I mentioned the campaign to the guy who’d contacted me about writing my previous article to see if he was interested.  He said he was, so I spent the afternoon writing up a general summary of the status of transplant in the country and the various different systems around the world.

What I’m most pleased about it that he particularly wanted to stir up a bit of debate about the subject and if you go and check out the article online (here), you’ll find a lively exchange in the comments section underneath, which is really good to see.  Except maybe for the comment about my hair…

After being in the study working all afternoon, my chest was protesting a little again so I stayed on the sofa watching a movie in the evening and headed to bed at a sensible time. 

Better than anything was the fact that I got myself comfortable (not always possible with chest pains) and slept solidly through until 11am this morning – 12 hours sleep being something I’ve not enjoyed for as long as I can remember.  It was blissful to wake up and discover I’d been out like a light all night.  And it’s really recharging, too.

What I’m most pleased with today, though, is that I’ve stayed true to my promise to chill for the next few days before Christmas and have done very little again today.  I’ve been massively helped by the fact that I’ve had friends round to see me most of the day, which is good for sitting on the sofa chatting and not having to move or do other things.

But I’ve also been really good at doing physio sessions and stopping myself from “popping out” or sitting in the study at the computer for too long, or at the table in the kitchen reading the paper – all of which have a tendency to put extra strain on my chest and induce pain here and there.

Fingers crossed, I’ll be able to carry my discipline over to tomorrow, when I’ve got a little more planned, but am hoping that when I’m not out of the house, I’ll either be in bed or on the sofa doing nothing at all.  And K’s back from her parents’ tomorrow afternoon, so she’ll be around to police me.

Had a really good giggle last night when I ventured out with the fam and K to watch my bro enjoy his birthday pressie from earlier in the year with 10 minutes fly-time at Airkix indoor skydiving centre in MK.

It’s unbelievably cool – a little plexiglass bubble one story up above a pair of jet turbiney things (that’s their trade name, obviously), which serves to suspend people mid-air as if falling at great speed from a plane.

My bro, the sicken sports fanatic that he is, got on amazingly well.  He did 4 “jumps” of 2.5 minutes each and manged to learn 8 out of 10 techniques of flight.  His instructor told us afterwards you’re supposed to learn one per flight, so he’d doubled the expectation and mastered most of them within his 10 minutes.  I really hate him sometimes.

Mind you, it was hilarious to watch him with his little cheeks wibbling away in the uprush of air.  He even managed to dribble upwards.  It feels a little odd when you watch people do it, because you’re the other side of a plexiglass window about 2 feet away from them, so if they lose control a little, they endup nearly head-butting you.  Nervous laughter abounds amoungst the spectators getting a little weirdly close to people the don’t know in zoo-like conditions.

It’s an amazing thing, though, the Airkix centre and I have to recommend it to anyone as a gift, or even as a treat for yourself.  It’s not cheap, I know that much, but it looked like so much fun.  I was extremely jealous, but I’ve got something else to add to my list of post-tx “must do’s” now.

After we watched his diving antics, we all headed off for a nice Tex-Mex dinner, which went down wonderfully.  By the end of it, though, I was exhausted.  Is wasn’t until we were in the car on the way home that K pointed out that I’d woken up at 6.30am that morning (no reason, was just awake and couldn’t nod off again) and without a sleep in the afternoon, it was no wonder I was a touch on the snoozy-side.

This morning I woke up even earlier, 5.30am, with roaring chest pains.  After my last little pointless jaunt to casualty with over-exuberant pre-diagnosis, I decided it best just to grab some painkillers and immobilize myself for the day, so I duly took to the sofa in true grumpy-lunged sulk.

Watching the sky-diving and at the restaurant I’d gone without my O2 and I think this is my body’s way of telling me that it was distinctly unimpressed with my choice to move around quite so much without additional support. 

I’ve been a lot more comfortable this afternoon than I was when I woke up, but I know a chiding chest when I feel one, so I’m sworn to “good boy” status for the next few days to make sure I can make the most of Christmas.

It was also pointed out to me today by the lovely Lady K that my last update vaguely referred to things going on in April without any real expansion.  Apologies for the vagueness, and I promise I’ll post with full and inclusive April updates shortly, but for the record there will be a fundraiser for the CF Trust through the MKT Activ8 Youth Theatre by way of a mainstage performance in the middle of April.

More to come, so watch this space….

MUCH better day today, as I was sure it would be.  Well, semi-sure.

But my body’s been decidedly responsive and I’ve managed to pass through an entire day with remarkably high energy-levels and not very much in the way of breathless episodes and other nastiness.

I slept pretty well, which is always a good start, and didn’t lie in bed too long this morning, which is something I’m increasingly persuaded is a bad thing in terms of momentum for the day.

This afternoon I ran K over to an appointment in Northampton and used the spare time to visit Suze, my partner in crime from MKT, from where I’ve sadly been completely AWOL for the entire term.  It was good to hear that all the work they’ve been doing is going fabulously well and that plans for the show in April are really rolling along.

I’m desperate to get back there and get my creative juices flowing again.  The workshops really energise me – working with kids and young people is so inspiring because of the way they see things and tackle problems.

One of the things I always fall back on when I tell people how great it is doing what I do is how much we can learn from children.  The most important thing in a 6 year-old’s life is whatever they happen to be doing at that moment in time, and that’s absolutely the way that we should all live out lives.

The trouble is as we get older, other stresses and worries crowd in and take over the freedom and innocence we enjoy as children and everything becomes more complicated.  But working with the younger groups at MKT has really helped me keep in touch with the old adage of living every day – and moment – for what it is, not what it could, should or has been.

The older groups at MKT simply serve to drive me forward creatively.  There’s nothing so powerfully motivating than seeing a group of people you’ve worked with for a long time learning and growing and expanding their experiences and outlooks on life, and to be challenged in your beliefs and understanding of the things around you. 

They push me to better understand myself and my ideas and to make sense of what I’m trying to communicate, to them or an audience or anyone else.

And working with Suzanne has given me the opportunity to be involved in a whole load of things in a whole load of capacities that I never would have had chance to do were it not for her faith and trust in me and what I can (or can’t) do.

Needless to say, I miss it mightily and I’m yearning to go back.  What’s fantastic about today is that having spoken to Suze and caught up on life, the universe and everything (sorry about the house!) it’s helped me to remember just how much I do want to still be part of what’s happening and it’s making me more determined than ever to get a grip on what my body’s doing and learn to play it properly so I can get myself back into sessions, even if it’s only for a couple of hours a week.

So today has also proved to myself that although bad days come along once in a while, but that they will always pass and be replaced by a good day.  I’m lucky in that it’s turned around quickly this time, but even in the blackest of nights it’s important to remember that there’s always a light at the end of the tunnel – and you know you’re going to get there in the end.

Here’s to April.

So, in the grand scheme of things, this week has been a Good Week. 

Following last week’s major dip in form, interrupted only by a day of media insanity which appeared to coincide happily with an inexplicably good chest day, I finally appear to be getting a grip on a) the physical recovery process, with more energy, more internal resources and less time necessarily dedicated to sleep and b) the mental side of the game, which has seen me first acknowledge then work to accept my newly imposed limits.

In fact, my biggest challenge at this moment in time seems to be how to write a blog when covered in constantly interfering kitten.  Pepe, one of Mum and Dad’s two new additions (alongside sister Tio), isn’t happy about my paying more attention to the funny glowing box with movey-cursor thing and there’s something distinctly antagonistic in my fingers on the keys, it would appear.

It’s hard to type with a kitten biting your thumb.

As I improve I am working hard not to get too carried away with recovery and am relying rather heavily on K and my ‘rents to keep me grounded for the time being.

For the first time today I ventured out of the house under my own steam and wanted to do more but was talked down by K.  Dad has a Christmas party at work tonight and needed a lift there, but Mum had been to a Christmas party at work and was one over the limit, so I obligingly offered to run him into Town, from where I was planning to go to the flat and pick up some bits and bobs.

But, considering I’ve now gone two days without an afternoon kip (through lack of tiredness, not stubborn-streak staying awake), it fell to Lady K to suggest that perhaps racing round to the flat, up the stairs and back no doubt laden with odds and sods wasn’t the best way of testing how sustainable my energy levels actually are.

That said, it didn’t stop her urging me to boldly step back into Real Life by stopping at the chippy on my way home…

The point is, though, that as much as I feel like I’m striding forward at the moment and as positive and happy as that makes me feel, it’s important not to lose sight of what a tight-rope I’m walking just at the minute and to do what I can to minimise the risk of  a relapse.

Which means that while it’s important to know my boundaries, it’s equally important to identify them through gentle probing rather than smashing through them at a sprint.

The challenge now is how to ignore my natural instinct to plough ahead full-steam and instead to slowly reintegrate myself to life, the universe and everything.  And those of you who know me will be only too aware just how big a challenge that is.