Where I am at.

Why is it, that I can always think of loads that I want to say and it sounds so eloquent in my head. Yet I sit down in front of a computer, and my mind draws a blank.

I have always held in my mind, that my breathing was going to get fixed. That one of the major surgeries would eventually be the one that worked. That perhaps I wouldnt know it at first, but that I would get better. I have always had in my mind, that things were going to get messy, that I something could go drastically wrong and so I have been prepared for that. To prepare those close to me, for the possibility of my story not having the happy ever after fairy tale ending. And yet, inside, I have held it my mind that I one day I would be able to breathe.

The fashion at the moment seems to be to make a bucket list and whilst I have things that I would like to do, rather than it being a bucket list, it has been a when I can breathe list. It contains all kinds, from the fun things like kite surfing and marathons, to the simple things like living independently, graduating and holding down a job, not to mention goals, such as climbing the local cathedral tower and getting to the top of Monument in London.

But as time progresses, the chances of this get smaller and smaller. Each major surgery, leaves me feeling weaker and less able to breathe. The restrictions grow, the treatments become more and the future begins to look a little darker.

Right now, I am having surgery every 3 weeks. Only smaller ops, laser and dilation, but still regular admissions and regular damage. I still have a trach in, but my peak flows, sit around 110-150 lpm. When at home, I run an average of 2 hours of nebulised medications (6 different ones twice a day) and extra when I need it. I am attached to a hot air humidifier for about 9 hours a day and take around 30 tablets in addtion to daily injections. But, its not enough to stop the deterioration. These days, I have an almost permanent stridor that makes me feel rather self conscious.

I go to theatre on a Tuesday, by the sundayI begin to feel the restriction again and by the time I next go, even simple movement around a room leaves me feeling out of it with major headaches.

Between that, I have regular courses of antibioitcs, both in tablets and IVs when needed. The problem with IVs at the moment, is that I have very poor venous access. This means that I have to stay in hospital whilst on IVs, so they can keep my access open. A course of IVs is usually 2-3 weeks, but I go to theatre every 3 weeks. It makes things complicated.

At present, I am taking a course of antibiotics via tablets, given them straight after theatre as well as a heap of extra physio and nebs, but by the time I am off the tablets for a week, my lungs begin to kick off once again. I cant put the IVs off for very much longer.

Right now, I am running very low on options. They cant keep taking me to theatre every 3 weeks, but the airway wont stay open on its own. At some point, the doctors will need to admit defeat.

I have faced my own mortality on a number of occasions and whilst I am not scared of death, I am petrfied of dying. I remember moments of sitting in hospital, gasping for every breath, fighting to get the air in and just feeling pure terror. Tears flowing freely as I begged for help, all of this in hospital settings, were help is on hand and you can still have faith that the doctors will be able to correct things. But to face this with the stark reality that there is no help coming, that the fighting for each breath, is the easy bit, because the alternative is not breathing and not existing. That is what scares me. I dont want my family to have to comfort me, I need to be strong for them, especially if the end were to draw near. It would be my final act, to go out brave, a fighter to the end they would say. But the fear grips me, It reminds me of all the previous times and pretty soon, the fear bubble ups and I feel it sink its teeth into me like a snake that wont let go until it wins.

And that is what sits in my mind, it what always sits in my mind. It is what has spurred me on through the big ops, given me the kick to keep going even when the odds are against me. Fear, like that feeling when you go over a hill and your stomach takes a few seconds to catch up. It grips you and takes you down with it. Leaving you nothing but a moany sulky brat, when you long to be the grateful brave warrior.

I guess that I just wanted to put that out there. I have nothing to fear but fear itself, but this fear is a great one and not something that I can see myself getting over before I need to.