Archives: Improvement

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.

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.

For all the forward motion I’ve been making recently, the pendulum was bound to swing back.  I’m sure someone far more intelligent than me said something once about equals and opposites and all that kind of thing, but I have better hair than him, so I can’t be bothered to quote him properly.

Still, after confidently striding forward and warning myself strictly against doing too much too soon, I spent this afternoon in bed after, well, doing too much too soon.

I hasten to my own defence to say that a) I spotted it early and nipped it in the bud and b) actually the hour-or-so I spent in bed on Neve (hmmm… maybe not such a clever idea to name the NIV after all – that could get a little confusing) and the extra session of physio have done me the world of good and this evening I feel top-notch.

Yesterday I went to Oxford to finish IVs – that’s a grand total of 5 weeks all together, my record for recent times.  My chest is a lot better and my lung function was hitting the 0.7/1.4, which is about as high as I go these days.  For those of you who work in percentages, that’s very roughly 20%/25% predicted.  More encouragingly, my SATs were running at 93% on 2 litres O2, which is unheard of for my since around August.

I’m coping pretty well off-oxygen now.  I’m still using it almost all day, but I can cope with wandering around shops (ok, Borders) without it for an hour or so, which is good.

I try to justify it by saying that it makes shopping a whole load easier not having to lug a cylinder around the shop with me, and I reassure myself that I’m good and have it in the car when I’m driving and wear it all the time at home, but if I’m truly honest with myself, it’s still very much a vanity thing.

K and I decided we wanted to cook dinner tomorrow for Mum, Dad and my bro, who’s home for Christmas, to thank them for putting up with me for the last few weeks (well, not my bro, ‘cos he’s not had to cope with me invading his life, but it seemed a bit mean to cook for everyone else and not him when it’s in his home…).  So we had the cunning plan of hitting Tesco’s late last night to avoid the crowds.

At 8pm we thought we’d got it right and BOY were we wrong.  It was still heaving and in one despairing moment of realisation I stood at the threshold of the store in Kingston and realised that it was WAY too huge for me to wander round, especially at the end of a long day.

It’s always a little dispiriting to have to acknowledge your limits – especially when things are looking up again.  But I’m proud of the fact that I didn’t just try to “soldier on” through the shop and completely wipe myself out, but instead called it a night with two bars of Toblerone and headed home.

I think, actually, our late-night jaunt is probably the crux of what lead to my energy shortage this afternoon and, again, I’m pleased I spotted it and took action (or rather, in-action) to combat it without trying to soldier through.  I feel much better for it physically and it’s given me a boost in my mental confidence to know that I’m learning to listen to my body again.

So tomorrow I’ve prescribed myself a day of rest, doing nothing all morning and afternoon and plenty of physio so that I’ve got energy enough to help K whip up a storm in the kitchen and give Mum and Dad a proper thank you.  And my bro, I suppose…

I’m clearly starting to reach sensible fitness levels as for the first time over the weekend, my mind has started to whir with possibilities of things I could be doing, or would like to do in the New Year.

Sadly, most of them are all things that will be beyond my reach before my Tx, but I suppose there’s no problem having some kind of roughly sketched plan for the future, however far away it may be.

At times like these, I find the difficult thing is to focus my mind on to one thing in particular and get something done.

Right now, for example, would be a perfect time to knuckle down and get some really good writing done.  Perhaps one of the new play ideas which have been circling my head – written up into draft form, or even just solidified in story terms.  Or perhaps taking an opportunity to look back over one of my few first-draft projects and hone them slightly.

Inevitably, though, I find myself enjoying my imagined new-life projects far too much and taking myself off into my fantasy new world while achieving nothing and taking no steps forward in the real world.

It seems silly, really, to become too swept up in the details and nitty gritty of the grand schemes I have laid out post-Tx when right now, planning whether or not I’m well enough to make a trip to Borders to finish the last of my Christmas shopping or treat myself to some new reading material.

What I need is some focus, and that’s what I’m heroically lacking in.  I say “heroically” as I’m blaming it on my brain as a way of coping with ignoring all the negative stuff that’s inevitably swirling around at celebration times and the turn of a New Year.

Yes, it helps to bluff oneself with the concept that you’re looking after yourself in the long run, and right now while you’re recovering physically, any kind of mental exertion is good, whether its practical or dream-based.  At least that’s my story and I’m sticking to it.

There’s also the question of the “holiday season” as some loathsome people are wont to call it, which is arriving like a speeding train and is just as likely to derail any well-laid plans anyway, so it’s yet another excuse for butt-sitting and job avoidance.

Indeed, it seems fairly clear sitting here bashing away at the computer during the half-time break of the Sheffield Utd vs. Aston Villa game on the TV that the blog is just now as much a procrastination tool as anything else.

Or maybe – just maybe – forcing myself to sit and write my little progress notes of an evening is going to finally instill a little bit of discipline into my daily routine and lead me down the path of finally focused achievement.

Any takers?

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.

It may be slow progress, but I’m definitely learning – I’m improving my understanding of my body day-by-day and feeling better and better as a result.

The last two days (Monday and Tuesday) I’ve done absolutely nothing – the closest I’ve come to expending energy has been throwing a sandwich together or making a cup of tea, and even that I’ve done very rarely.

I’ve been incredibly strict with myself about sitting doing nothing, or next to nothing – watching TV or reading, not even letting myself work up to a blog (sorry about that) – and I can honestly say I can feel the difference.

Granted, I’m on new antibiotics and a not-inconsequential dose of steroids to boot, which I have no doubt are pushing things along, but lack of energy expenditure is certainly playing a big part in my improvement over the last few days.

Today for the first time in 5 days I actually left the house, heading over to Oxford for a physio session and a quick once over.  For the first time since I started IVs back in November, I actually had enough blow in my lungs to check my lung-function, which didn’t come out great, but the fact that I could do it at all was a step in the right direction.

We’ve opted on another week of IVs in the hope that the improvment that’s been shown over the last 7 days continues and when I eventually finish next Friday (the 15th), I should be fit enough to get through Christmas and New Year relatively hassle-free.

I’ve very much stopped planning ahead over the last couple of weeks and have avoided arranging things that I may have to cancel, simply because it drags me down so much mentally when I do. 

Christmas is rather unavoidable though (and I wouldn’t want to avoid it, either, however much of a Scrooge I may appear from time to time) and so my best plan of attack is to make sure I’m as well as I can possibly be and that I know my body well enough (at its newest settings) to stay on top of things on the day.

The last few days have really energised me, though, and I feel a lot more positive in myself.

At home we have an old joke stemming from my Mum when we were little, whereby every time we complained of any small ache, pain or minor ailment she would eventually come back with the line, “You’re probably just tired.”

It was infuriating to everyone at the time and hilarious to us all now, but I the last few weeks and months have driven home to a large extent exactly what she meant.

When you’re tired, physically and mentally, everything becomes a stretch.  Things that wouldn’t faze you normally can become the biggest hurdles when lack of sleep or simple exhaustion gets in the way.

Having bowed my head and accepted that yes, maybe mother was right (occasionally) I find things much easier to deal with.  It helps that I’m in a well-supported environment and I know that if I need to sleep, I just take myself off and sleep and I don’t have to worry about anything else. 

Hopefully this new-found self-knowledge, when combined with my old self-discipline at staying on top of what I can and can’t do, will help me into a new period of positivity and enable me to move forward in getting some of the things I want to do done.

Even if I don’t get them done, here’s hoping that perhaps I can muster enough time, energy and inclination to actually attempt them.

Watch this space…

A good friend of mine has recently been seeing a psychologist to help them through a particularly tough time in their lives and we were chatting about it a little while ago. They told me something their Crazy Doc had told them about managing negativity which has really stuck with me.

Negative thinking is like standing at a train station. When something happens to provoke “bad” thoughts, a train pulls into the station intent on taking you off on a journey through all your worst fears and insecurities, dragging up all the things which will drag you down and leading you on a sombre dance of distress.

But if you learn to recognise the triggers, you can provide a platform announcer in your head who can flag up the destination of the train pulling in and you can choose to stay on the platform. You can elect not to take the train to the dark place, but instead to board the daylight express to the end of the tunnel. You just have to be able to recognise the moments when you need the announcer.

It’s all well and good noting wisdom and realising its benefits, it’s quite another to put it into practice in everyday life.

Which is why I’m so happy about my day today and the way I’ve managed to avoid getting on the wrong train and instead enjoyed my time at home and looked forward to other things later in the week.

K took my mum out for a girlie shopping trip this afternoon, nominally looking for Christmas presents, but largely to look at pretty things and coo. I stayed at home in the flat, mostly to sleep.

In days gone by recently, this would have upset me. Not because I yearned for the chance to run around town pointing at prettiness (I’m not that girlified…), nor because I had a desire to nick a melange of treats from the sweetie barrow, but simply because they were doing something that I felt I couldn’t do.

But I chose not to get on that train, to avoid the Sloppy Bollocks Express to Tear Town, and instead jump on the Chill Train to the City of Smiles. Rather than see the afternoon as a missed opportunity to go out, it was instead a perfect opportunity to sit back, relax and pop on a DVD that I love but rarely get the chance to enjoy. (That’s The West Wing, not anything best “enjoyed” alone, you dirty minded older-brother-types. Yes, I’m talking to the twins.)

I find myself at my computer this evening not sullenly relaying stories of my abandonment, but finding ways of communicating how far I feel I’ve come in the last 24 hours in breaking the back of my adaptation process.

Life’s all about the ups and the downs – riding the waves and hoping not to fall off. But you always know that even if you do, all you have to do is paddle back out and you’ll pick up another one soon enough.

I may not get back to the level I was at before this summer, I may have to make changes and adjustments, I may want to scream and shout and tear the place down, but I know that with the love and support of all those around me, I’ll keep on going.

Kipling once wrote, “If you can meet with Triumph and Disaster / And treat those two impostors just the same,” then, “Yours is the Earth and everything that’s in it, / And – which is more – you’ll be a Man, my son!”.

My Triumph is waiting for me in the wings, and Disaster may be in the way, but you know what? I can take it. Hurl whatever you want at me, World, because sooner or later I’m going to have new lungs and I’m going to hurl it straight back!

The hardest thing to come out of my recent downturn in form – as it were – is the adaptation I’m having to make to the way I do things and the things I do.

Yesterday, my big bro took me out in the afternoon to catch the new Bond movie (which is fab, incidentally, if somewhat dumbed-down Hollywood in parts) in the Xscape Cineworld in town. The trouble is it’s about a 200-300 yard walk from car to screen, including going up a floor, which took me a long time to negotiate and a lot more energy than I was used to.

I’ve recently become accustomed to walking a lot slower than I used to, although I did go through a patch of setting off at marching pace for 10-15 yards before being pulled up by unhappy lungs protesting at the work rate. I’ve now learned to start out slowly and continue in the same vein, but this latest infection has left me with a real need for permanent oxygen supply – something my pride has not quite caught up with.

Last night, K had some old work colleagues over for a girlie night in, which I couldn’t avoid and actually really enjoyed (she’s really quite girlified me). But even though it was in our place, and spent entirely sat on the sofas in he lounge, I couldn’t bring myself to wear my O2 in front of the group.

Silly, I know, but a good example of the adaptations I’m having to make to carry on as normal. I’ve got to get used to the idea that I’m going to have to have my nasal specs on when people are here and, more troubling for the moment, I’m going to have to get used to taking a portable cylinder out with me when I leave the flat.

It’s hard to describe the battle of heart and mind that’s going on at the moment – my head knowing that things are not only easier but also much better with the O2 on, my heart not wanting to be seen as a “sick person” by all and sundry who see me in the street.

One of the few blessings of CF is that to the untrained eye (and often to the trained, if you ask medical students patrolling the wards in hospital), the average person with CF doesn’t look any different to the average person without CF. Slightly skinny, maybe, but skinniness is somewhat in vogue at the moment anyway (for the girls, at least) so it’s not a big thing.

Going out with nasal specs and an O2 cylinder is another matter altogether. No one else does that. “Normal” people don’t travel adorned with extra air. Which means admitting to the world that you’re not the He-Man you wanted them to think you were. Or, at the very least, admitting that you’re “different”.

It’s one of life’s little ironies that I’ve spent such a lot of my life championing individuality to my friends, family and, more than anyone, the kids in my workshops, and now here I find myself aching to conform, to fit in, to blend.

But needs must, and I know I’ll come around to it. I just need to be more forceful with myself and understand that if I’m wearing the O2, I’ll be able to do more than I can at the moment, and hopefully “freedom” will be the spur that allows me to come to terms with it.

Failing that, anyone with any other ideas, please let me know!