Monday, 3 October 2011


When I say aggravated, I mean my soul AND my body.  Lets start with my soul....

Today I went out for dinner with my mum.  We went to the Carvery just over the road.  The food was kinda mediocre, as compared to food I had there a couple of weeks ago.  It was annoying.  The idea of a cheap early diner bargain should be that you get the same quality of food that you would get at any other time.  But life doesn't work that way, does it.  Anyway, my mum had been expecting a payment from somebody, but when she checked her bank account, there was a big fat zero.  SO she spent all of the meal feeling upset and anxious, when it later turns out that they made the payment, it just won't clear till tomorrow.

Anyway, onto this job that I was offered almost four months ago now.  The thing that's holding it up is not the hospital.  It's not my referees.  It isn't even my health checks.  It is the CRB check!!  I got an email today asking me to resumbit an application, which is a pain in the wotsit, as the details are exactly the same as they were before.  So I got right to the end, clicked submit....and it crashed halfway through sending it.  Again.  Absolute joy.  But I did get an email telling me they got it, so I guess it worked out eventually.

Onto my soul.  Now, my surgeon told me something life four years ago that they were working on a tracheal transplant, and I was top of their list.  I saw my surgeon last week and it turns out that, y'know what?  I'm NOT....  It would be easier to understand if you knew what it was like to spend 14 years gasping for oxygen on a daily basis, multiple arrests and major surgeries.  Frustrating isn't the word.  It's actually downright scary.  I have spent almost half of my life now waiting for a cure.  The only thing that keeps me going is the promise of a cure.  But it feels like it will never happen.  I will never give up hoping, btw, don't get me wrong.  If they tell me that transplanted toad skin made a great replacement trachea, and they needed a guinea pig, I would let them do it!!  My surgeon told me ' you don't want to be the first'.  I disagree.  I do.  I do want to be first.  I've spent so long waiting, and my breathing is so painfully bad, that of course I want to be first.  I want to be cured.  I want to not feel like every day might literally be my last.  Bugger.

The poor quality of life that I have at the moment will never be enough.  I will make the most of it for sure, but think what I could do if I was well?  Just think!!!  I'd aim to be one of those illusionists in the deep south, lol, like the guy in X Men, hahahaha....

The worst part of the health issues is the tiredness.  I can only go for about two to four hours before exhaustion kicks in.  It's a pain in the you know what, because nobody believes that somebody who looks as healthy as me can be so tired and in so much pain.  It makes them short on understanding.

Today I am a little down, but I suppose what I want to say is, allow yourself to have those down days.  But pick yourself up again the next day and fight your ass off to stay alive.  You are to important to cave in to something like tracheal stenosis.  It's a hard fight, but no fight worth winning was ever easy.

Take care.  Listen to a nice oxygen filled song.  Like 'It's getting harder to breathe'! 

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