Monday, January 06, 2014

Mr Jibbins, what's the muse?

So Christmas has passed and New Year with it. 2014 eh? No shortage of people saying 'I'm sure this is the year for you Anders'. Let's hope so. 9 months waiting is plenty to me, but as I was kindly reminded by two friends who have been through the big TX (term used to mean transplant by transplant people. Not sure if there is some medical reference to it, but I think there is) that 9 months is nothing. Both the people I speak about waited over twice as long. I know! Twice as long?! Jesus. I'll be licking windows and sniffing various adhesives by that point. Even their wait is nothing, I know of a girl who waited over 4 years. 4 years in this limbo would be a true mind fuck. However, having said that, having complained, and yes there is reason to complain, I'm lucky to still be kicking about, writing nonsense and hoping that I do get those new lungs, no matter how long I wait.
Anyway, as I said, a New Year, a clear indicator of a passing of time. No better indication that the World is turning than the inevitable ding donging of Big Ben, the midnight fireworks and smell of alcohol and vomit from all your friends breaths, the arm round you and a voice saying 'I love you, I think you're great'. In true New Year fashion I did experience all of these things. So with this time of reflection, what did I do? Well....I reflected. Never been a fan of this time of year, with CF (and I think a few CF people find this) you are reminded of your mortality. Although reminded of my mortality I watched Highlander and convinced myself that I was in fact immortal for a short time. However, I was admitted to hospital on the 2nd of January with an intestinal blockage (DIOS - distal intestinal obstruction syndrome), so that fantasy didn't last long. There is only one, sadly that 'one' isn't me. I don't remember a scene in Highlander where McLeod's life was in danger due to being unable to evacuate his bowels, but then there were few toilet scenes in Highlander, something I believe is lacking in modern day Hollywood. However, much like McLeod after he was killed in battle, I too somehow managed to survive my battle and live to tell the tale. I too, once again like McLeod, was ushered out of where I was, not because they thought I was possessed by the Devil though, but because they needed the bed for another patient. If I had been possessed by the Devil, after the drugs and enemas I had to suffer, I'm pretty sure the Devil would have packed up shop and left. In fact with my final push I'm sure I heard a small voice shout 'Noooooo......I'm drowning!!!'.
Reflection, that was the point of this post. Yeah, it's been a time when friends have announced their pregnancies to me, some just got pregnant, some about to give birth. So not only have I been reminded in the usual New Year fashion of the ticking of time, but with the joyous news of friends upcoming kids, it made me only aware that I'm in limbo. Friends are making decisions with their lives, moving forward and I'm static. To be honest it's been like this for some years due to my decision to give up work and focus on health. My lung function has been low for a long time (below 35% for 8 - 10 years, if not more) and so making plans or thinking about change is difficult because transplant has always been around the corner, always there telling me to hold back because it won't be long until I need one. Well, after a lot of work I'm there, I'm on the transplant list, but the inability to make decisions or contemplate making real life changes can't happen until I'm fitted with new lungs. I used to say that with Cystic Fibrosis you had to get a balance. You could go out every night and party and burn out bright or you could sit in a room all day and do all your treatments, cut yourself off from any infection. Well, I've tried to get that balance throughout my life, sometimes over doing, sometimes under doing it. However, now I'm on the list I truly feel like I'm closer to the latter of the two. I tell myself it's only temporary, once those lungs come and I've recovered I can make decisions again, I can make plans. I can live life.
This limiting of my limitations isn't wholly psychological, there is a physical aspect to it too. I've decided to stop staying away from home, as I find it stuffs my medical regime and routine. When I do stay away I become tired, exhausted and spend a good few days trying to back things to normal. Last time I went on a weekend trip I came back with a collapsed lung. So as I said, it's not been a purely psychological decision, there is evidence to show my body doesn't like doing too much out of the ordinary and as such I play things cautiously. The truth is that, although I am doing better than a lot of people waiting for lungs I could well get an infection and things could go tits up, things are in some ways balanced on a knife edge. It's not a coincidence that 50% of people waiting for lung transplants die waiting for them, it's because they're very unwell and that's why they need them. I can't fool myself that I'm anything but ill, no matter how used to it I've got, no matter how normal it feels to breath like this or require oxygen. So in the meantime I will live in limbo, I will live with all the limitations that I place upon me and wait for them to be lifted. I will continue to wait to be 'The One!'.

1 comment:

Jac said...

Now it's going to be cliché if I say 'this will be your year!'. But it will :P xx