Wednesday, 18 August 2010

Ow, my poor little brain hurts....

Ah, I'm having one of those days, so please forgive me, I'm  going to ramble again.  I have to say, i think another really horrible effect of this illness is one that people don't consider; the financial side of things.  Since my breathing degenerated, I've been unable to work.  I kept trying to find a job that would be accommodating of my medical needs, but unfortunately such a job does not exist.  I work mostly in hospitals, I am a good hospital administrator, and it frustrates the hell out of me that I can't work.  I want to work.  But want I don't want to go through is what happened before;  I would have to get up at 4am in order to spend 30 minutes getting bathed and ready, and a further 90 minutes on my nebuliser before I could leave the house.  At 6am, I would get the train.  I would sit on that thing for about 60 minutes, before it arrived at my destination.  My medications had an unfortunate side effect; they caused my 'bowels' to explode at some unpredicatable time during the morning.  If I could time this before I left the house, then no problem.  Or for when I got to work, again, no problem.  But nine times out of ten, the pain descended en route.  And I more than once had to jump off the train at Whitechapel, and heave my way up the stairs and over the road to the hospital, so that I could use their toilet, and then lay on the floor until the stomach cramps subsided.  I know, it's graphic, but this is the reality.

And then came the day I coughed the stent out.  The stent is a 1.8 by 8.0cm hollow silastic tube, which is normally held in my trachea by a stitch which passes through the trachea to the outside of the neck, where it fastens the stent in place.  But on this day, I was just about ready to get off the train.  As it pulled into Great Portland Street Station, the doors opened and I coughed.  As I coughed, I felt a horrible slippery sensation.  I knew instantly that the stent was out.  And it was lodged in my airway at an awkward angle, preventing me from either calling for help or breathing well.  Luckily, I went into shock straight away.  I fell forwards onto the platform; the force of this provoked another cough, at which point the stent slid out completely and landed in my open hand.  I really couldn't believe this was happening.  Even more unbelieveable was that, despite seeing what had happened to me, noone offered any help.  They left me there, gasping for air on the platform floor.  I knew at that point that I would die there, alone, cold and terrified.

My trachea will not support itself without the stent, it just slowly collapses in on itself, causing a fatal reduction in oxygen levels.  So with the stent out, I was in serious danger.  There was one chap, a New Zealander, who caught my eye.  He registered that something was wrong, and he said 'what's happened?'.  I showed him the stent and said 'this is my windpipe...'  he grasped the urgency of the situation, dropped his bags and ran for help.  he returned with the station manager and eventually, after much kerfuffle, I was taken to hospital at UCLH. 

Anyway, this episode left me with a bad case of PTSD.  I did try and return to work there, but it became increasingly difficult for me to make the journey.  I would not sleep for three days because I would get so stressed about revisiting the site of my near demise.  So I had to leave the most wonderful job I've ever had.  I miss it to this day.

And then there was the trauma of the return journey.  Usually after a days work I would be so dry that I would sit on the train literally gasping for air, and in terrible, terrible pain.  On more than one occasion I almost completely blocked up with sticky mucous.

So there you have it, tracheal stenosis has stripped me of my future, my present and now, as time goes by, a lot of my past.  It has affected my ability to care for myself, and provide for myself.  It has presented me with experiences that I just don't know how to begin to handle.  And the resulting lack of money restricts my ability to educate myself to overcome these challenges.  I just hate it.  I need something, and I need someone to help me.  please, just make it go away.  I've had enough being strong, I just want to be normal again.

The final thing it robbed me of; my sanity.  I cannot have a family either.  I also have developed arthritis in my spine, and this is causing it to degenerate at a rate of knotts.  I'd like to say I'm just having a bad night, but I would truly be lying.  I've been feeling like this for over two years now, and it's just getting worse.  I'm sick of waking up in the morning and wondering if today will be the day that I die?

I'm 30 years old, this is all just wrong.

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