Saturday, 19 November 2011

Final Exit

Hi there.

I don't mean to be morbid, but I wondered how many of you are aware of the risks of TS.  Do you realise, for example, that it may eventually be deemed incurable, once you've tried all the drugs, physio, surgery and grafts and transplants that are available to you, bio engineered or otherwise?  So what happens next? 

In my case, it happened gradually.  I had several years where, although my health was bad, I was basiacally able to work.  I just had long periods of coughing and spluttering, and many, many weeks in and out of hospital having suirgery, and IV antibiotics.  I could live what was a basically normal life, with just a few restrictions.

Then I became too ill to work.  I tried to work, but people kept complaining that I was too slow, too tired, I looked half asleep, I needed to go quicker, I was disgusting and should be kept in a box!  I was exhausted and in a lot of pain.  But so long as I had a lot of rest, I could get involved with voluntary work, and I managed to do some good for Chester society.

And then I became dependent on the nebuliser.  I developed a problem whereby my lungs had become so damaged that I produced thick and very sticky mucus.  This problem, brionchiectasis, combined with a very narrow airway with a stent in situ), meant that I experienced in excess of 20 near fatal blockages every year, for five years in a row.

I then discovered mucodyne, which was a miracle drug for me.  But the mucus had done a lot of damage to my lungs, and it just hurt to breathe so much.  I tried to go back to work, but I was easily tired, breathless, I had toi drink non stop, which led to more bathroom breaks than average lol, and on more than one occasion I had to leave instantly to get to hospital to be medicated for almost total blockages resulting from mucus plugs.  It was a constant struggle and I had to take days off work not for the sake of my health, but for the sake of my life.  My employers in some cases were less than understanding.  Many of them openly accused me of faking, or of overexaggerating what was wrong with me.  And to top it all, I had at the time what was undiagnosed, and therefore unmedicated bipolar disorder type 1, which made me either so depressed and almost catatonic that i was almost impossible to communicate with, or so overexcited that some people told me it made their head hurt to be subjected to the constant rush of ideas that was going through my mind.  I was in a very difficult situation and I couldn't win.

And then my airway deteriorated to the point where it was classed as untreatable with currently available technology.  ANd I was unable to work, which was a blow because I really wanted to.  They told me quite bluntly at one of my appointment two years ago that my TS was most likely going to be terminal.  And I smiled, and said thank you.  Then I went home and made dinner for my husband, and asked him about his day.  It took weeks to sink in.

Which leads me to my question of today.  Have you ever made plans and preparations for what you would like to happen after you die?  Even if the TS can be cured or controlled, and is not the cause of your death, you should really leave instructions for your family in the event of your death; it would save them from having to deal with that stuff at a time when all they want to do is cry.  And they might find it coforting to know that you thought enough of them to take that worry away from them.

I have made it clear to everybody that my ideal death, if the pain and lack of available air to breathe become too much, that I wouyld like to go to an assissted suicide clinic in switzerland.  It's not for everybody, and I'm not promoting this or even advocating it.  It's just something I feel may be right for me.

I have also planned for what may happen if I cannot complete the process required for my first choie.  I would like to be cremated.  The idea of being buried ina box makes my skin creep.  It's frightening.  I would like my ashes to be scattered over London, the City where I have lived most of my life, the place I was born and bred.  I don't want a big do at my cremation.  It would be nice if they could find a way of playing my fabvourite tunes from my ipode for the hours before I am crispy fried, lol.  And then just as the gates to the chamber open, maybe they could play 'thought I'd died and gone to heaven'.  hehe, my idea of an apt song.

And then maybe everyone could have a drink and say cheers to me.  And then they can leave me be.  I will be fitted for my angel wings and hello, and learning how to fly up to the pearly gates.  Can't wait!

Ultimately, I think that if I have made plans for my final destination, it will ease the stress a little for my husband.  And I love him enough to want to do that.  I've even taken out a funeral plan to pay for it.

Sorry this is grim and a bit morbid, but the moral of the story is that TS can kill you very suddenly and without warning, and you need to be prepared.  In the final moments of your life it really is comforting to know that you have all your 'shit' in order. 

I really hope that you are cured of TS way before it reaches that stage.  But as the brownies used to say 'be prepared'....  or was that the scouts?  Lol, all I can think about know is 'hoot hoot hoot', and dib dib dob!!!!

Speak soon XXX

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