Tuesday, 17 August 2010

Big stringy lumps of goo...

So today I will mostly be talking about big stringy lumps of goo.  Specifically, my stringy goo.

This is an unexpected complication of the TS.  After many years of suffering with constant chest and throat infections, I now have a condition known as bronchiectasis.  And I also have scarring on my lungs as a long term complication of a complication of glandular fever (Acute Respiratory Distress Syndrome).  Trying saying that sentence in one breath;  I can't, hehehe I can't even type it without getting breathless.

Anyway, back on point.  Both yesterday (and today) I've had moments of real panic.  I attempted to cough and clear my throat, a perfectly normal things to want to do, and instead of everything becoming clearer, everything got really, really clogged up.  I admit, between you and me, I panicked.  I did everything I was supposed to do; I sat on my nebuliser for an hour, putting through ampoule after ampoule of saline until it cleared.  But I hated every minute, and I resented every minute absolutely beyond belief.

It surprises me that even as the years go by, the psychological effects of this are no easier to deal with.  I am, to be honest, completely terrified of suffocating to death.  I have experienced respiratoy arrest more than once; it's painful, it's terrifying and, during those moments when the oxygen levels in your blood fall you are filled with certainty that you are going to die.  It's horrific.  I constantly suffer flashbacks and moments of pure panic.

So as you can probably understand, when things in my stent get a bit sticky, I get really stressed.  I wish I could be out doing anything, absolutely anything else, than sitting here on a nebuliser for five hours a day wondering if the next time I cough will be the time that my throat blocks up and I die.  That's the reality.  People see me and they don't realise that TS affords the sufferer a greatly reduced risk of living.  I don't have the luxury of knowing that I'm going to die, I have to consider that I might or might not.  I can not live the life I want, and i cannot prepare myself for death.  I live in a constant state of limbo and panic.  I keep telling myself that I have to keep living life,  because at the moment, I have no choice.  I have to hold onto the hope that my prayers will be answered, and the great GS will be able to pull of this transplant.  Hope is all I have now; I don't have a life anymore, that's for sure.

The good news is, my friend who was having the op came through it alive.  She's struggling a bit with the post op effects (lets face it, who wouldn't), but she is strong, and she has a great sense of humour.  That'll get her through.  She hates the TS as much as I do.  You have to hate it; if you don't fight it all the way, it will win.

She's even finding the time to give me some help dealing with my chest problem.  How nice is that?  Doctors have a go, but there is only so much they can do.  People who have been there and done it, however, can give you the honest inside track on how effective each treatment was, and the relative advantages and disadvantages.

I hate TS but I love life.  I have a lot to give back.  Maybe one day, I'll be able to live it again :o)

Hope springs eternal.  Without hope there is no light.  Without light, there is only darkness.  With darkness, come bruises.  You bump into things a lot.

I really shouldn't try and write sensible passages when I've taken my painkiller, lol, it just comes out as pure chain of thought.  Oh well, welcome to my mind everybody!!

Hope you all have a lovely sleep.  Good breathing, people!

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