Tuesday, 18 October 2011

Sick of TS? Terminally so.

Hi All,

Y'know, there are days when I genuinely get sick of TS and all that it entails.  I got a letter from my Consultant the other day, and it said something that you never want to read in a medical letter.  It said that 'they (the medics, surgeons, etc) should continue to support me in leading a normal life as far as is possible'.  They mean well, I know they do, but what they seem to be saying is that a normal life is now beyond my reach.  I asked my doctor what he thought it means, and he replied that it's something they write a lot about people who have a condition that is deemed incurable.  Incurable?  Says I.  Yes, says he.  In other words, terminal.    And I just thought 'I will prove them all wrong, again'. 

I should explain.  Over the years of my journey with TS, I have had several near death experiences, a couple of actual death experiences, and I've also been told time and time again that I will never recover from TS, and I will always be too ill to walk myself to the toilet, or get dressed and washed in the morning.  Well, I tackled those hurdles one by one.  The first thing I did was to learn to walk again.  Then to get dressed.  Then my hair fell out.  My lovely long blonde hair.  That was a blow, I do not look good bald.  But when it grew back, it grew back thick, dark blonde, and (wait for it), curly!!  As someone who had straight hair her whole life, the curly was a real bonus.  I look at photos of that time, and I look like I have a blonde 'fro,  Straighteners were not common ten years ago!!  Not even in Essex!!!

I guess what I'm trying to say is that even when life deals you dirt, sometimes the sun shines on your head and flowers grow!!  They haven't given up on the idea of operating to replace my necrosed dead deaded tracheal with a bio engineered or tissue engineered one, but I guess they have introduced to me the idea that it might not happen.  And if it doesn't happen soon, I am done for.

I've started to make plans for my funeral.  Not wanting to be morbid, but I guess these things need to be done.  I have begun a list of music that I like.

1.  Harder to Breath by Maroon 5.  Because it's funny!!  I'm allowed to laugh at my predicament.
2.  The Air That You Breathe by Population One.
3.  Take my Breath Away
4.  Breathe by Kylie Minogue.

Other songs that I just like:
1.  Nothings Gonna Stop Us Now by Starship
2.  Anything by Nuno Bettencourt/Extreme
3.  I'm Going Home by Daughtry
4.  Breakfast at Tiffany's by Deep Blue Something
5.  Bailamos by Enrique Iglesias
6.  Until you Suffer Some by Poision

There are literally hundreds more songs that I love, many of them vastly different.  Music has been a huge comfort to me in some of the most painful and distressing days of my life.  I really hope that continues.  Without music, people miss out on so much.  My mum is totally deaf, and yet in her heart she can still hear the music of her youth.  She was robbed of her hearing, but her memory stepped up to the plate and won't let her forget the songs she loved.  That happens a lot in life.

So if you're struggling right now, I'm asking you to go out and try to find one thing that brings you some pleasure in life (keep it clean please) and get out there and do whatever it is as often as you can.  Make it within the law and productive, and you literally can't go wrong.  Seize the day and get as much as you can from life, don't just dwell on the nasty painful crises that life throws at us from time to time.

You have the power to be anyone you want to be.  Even physical limitations can be worked around.  Okay, I'm never going to be able to run marathons, for example, but I could get out there and support the people who do.  Getting involved with the community is a great way to distract yourself from your own problems. 

I just hope that today brings you better news than it brought me.  Forgive me for sounding lectury, lol, I just had some really lousy news and it's blown my mind a bit.  I'm trying to see the positive, but it might take me a few days to figure out where it is.  Sometimes the happy likes to play hide and seek.....

For now, my friends, have a good night.  Sleep well and be peaceful, there's nothing in life that can't be dealt with in the morning!!!  Sweet dreams X

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