Sunday, 28 April 2013


Drums keep pounding a rhythm to the brain. La de da de dee. La de da de dah. And the beat goes on
Beat Goes On - The All Seeing I

Day 52 : In search of rhythm.

Eric Morecambe famously played Andre Previn "all the right notes..." If you don't know the end of that line, and even if you do, click here to watch it on YouTube. (A contender, surely, for the funniest piece of TV ever.) Personally, I'm not worried so much about melody as rhythm. I'm feeling distinctly syncopated. I'm half way to the fabled "Day 100", when we'll (I hope) be able to formally declare my recovery complete. But right now I'm feeling a little unstructured and lacking in meter. I'm not quite sure how much to take on, neither wanting to overdo it nor underdo it. 100 days is a long time, and I'm getting a little bored. Rest is not in my character. (Let's face it, I'm normally known for having too many things on the go at once.) Plus a number of the things I had thought I might do to occupy my time involve sitting in front of a PC, and now I think I'd rather be elsewhere (and my back would certainly thank me for that decision). So... I need to find things to do. My task for the next week is to put on a few new beats.

I'm doing well physically. I even cycled with Ben to his cycle club yesterday. This used to be our designated weekly Ben & Daddy activity after Lyndon was born, and we were both gutted when I could no longer do it. I asked my doctor last year if I was OK to cycle and he said
"as long as you don't fall off".
That seemed impossible for me to guarantee, on Lambeth's streets, so I decided I was safer to stick the bike in the shed for a while. But I'm feeling less frail, now. It's nice to be back in the saddle (not often one can deploy such a cliched metaphor and mean it literally).

I made the walk to church today for the first time in 2 months. And I've spent several hours on several recent afternoons with the children in the park, including pushing Lyndon on a swing - an activity involving standing still which, simple as it sounds, I find challenging to do for any length of time.

In one word: progress.

Sure, my legs still ache in the morning and evening, but after discussion with my physio, who thinks it is just weak muscles building up lactic acid too quickly, I've increased the number and strenuousness of me stretching exercises, and that seems to be helping. And I'm still getting bouts of fatigue, but bearably so, for now.

I was disconcerted yesterday afternoon to lie on the lawn and discover that my belief that I can lie flat on my back is a complete myth. I can lie "flat" in bed, but if I lie on a completely hard surface my shoulders are suspended a surprisingly long way up in the air. This is just another reminder that my back is not straight, which I am not happy about AT ALL. So I have spent a chunk of the last two days trying to change that reality - first on the lawn, and then, when the April showers began, on the living room floor. Given some time lying still, my muscles gradually relax, enabling my spine to straighten and my body to get a bit flatter. I think I need to do this more frequently, if I want to really regain my posture, even though afterwards I feel very stiff. My physio has told me to exercise to the point of stretch but not pain. It is very difficult to distinguish between the two, when stretching triggers stiffness which leaves me struggling to stand up. It is possible, in my experience, to be disabled by stiffness, without it being overtly painful. I've had this debilitating problem for months, and before my transplant I had decided that if it required strong painkillers to relax my muscles, then that was a price easily worth paying. Since my transplant I haven't suffered to the same degree, and I've been avoiding painkillers completely, as well as avoiding anything that might cause me to need them. I'm nervous about becoming dependent on painkillers - I don't want to end up addicted. When I say "strong painkillers" I have in mind oxycodone, a synthetic opiate, and a Class A drug, unless you possess the right prescription. It is very good stuff, but that's why I'm nervous about it. But now I'm wondering if a different tack is required. I think I'm going to spend a bit of time each day lying flat on the floor, to straighten my back. And if I'm stiff afterwards, and need a painkiller in order to get to bed, then I'm going to consider that the lesser of the two evils.

A number of people have asked about or commented on the fact that I begin each post on Dial M with a song lyric. It's just the way my head works (la de da de dee). And a bit of fun (la de da de dah). Someone who knows me very well accused me of showing off. There's usually a link (though sometimes tangential) between the lyric and the subject matter. Anyway, in response to requests I have put a couple of Spotify playlists together of the songs from which I've quoted. Enjoy.
Dial M playlist part 1
Dial M playlist part 2

1 comment:

  1. Alex good to see you're strength is returning. In regard opiates, in a previous incarnation of this bloody disease I was on significant amounts of morphine. When I needed to stop taking it, I tapered off the dose over a period of time, halving it in stages. It took a while but I barely felt it.