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I'll be 55 this August... I've had bronchiectasis for ten years plus this year... End stage lung disease for the past year...been on oxygen for three years... and have I got used to it yet?... nah! I am now waiting for the biggie; a double lung and maybe a heart transplant. I love my life weirdly enough, because I have some wonderful family and friends who are with me every step of the way on my adventures, even though I embarrass them on a daily basis with my unorthodox way of looking at life. Not for the faint hearted!

Saturday, 15 October 2011

A smile a day keeps the bogey man away

Well another Friday has passed and for the second time there hasn't been a phone call from Papworth to say all the tests results are sorted and that I'm now on the active list.
How do I feel about it?
To be honest I don't really know.
After spending those three days there, I know how crucial it is to get everything finely tuned and all information exactly right, after all my life depends on it. But I have a sneaky feeling that this will be the first of many set backs on this next part of the journey to getting my new lungs. So you could say that this is my apprenticeship.

I'm rather glad that there has been so much coverage on TV about transplants these last two weeks, as I'm hoping it will stop people asking me or at least make them think twice before asking 'so when you get your new organs?'
I know that they are all genuinely kind and interested my health honestly, but perhaps people think that you get issued a ticket and that transplant hospitals are a bit like the waiting room in the film 'Beetlejuice.' And when it's my turn they would yell out 'would number 1,483,19 please come in!'
I know I was pretty ignorant about transplants, but even I knew that it wasn't a case of popping into hospital and going 'Ooo I'll have that pair please!'
People look at you when you say no, as if you are a fraud because this has been going on for so long. Sometimes it's on the tip of my tongue to say, 'well actually, see that young woman there? well if she would just hurry up and drop dead, then I can have her organs.'
Can't see that going down well, can you?!

I suppose not receiving the phone call to say I've gone active, gives me more time to sit and watch a film at the cinema without worrying about could I get from my seat to the double doors before they hang up? Or having to text my daily movements to my boys just in case I forget to take my mobile with me when putting out the recycling or something trivial and miss the hospital calling me.
I've found since I've been assessed, that all my energy seems to have been sapped out of me and that I feel like a wet rag that's been put through the mangle. I just want to keep falling asleep all the time. Where has all that new found energy of swimming and weight lifting that I had before my assessment gone?

I did go walking today with some of the girls from work, as we met up for lunch at Maldon... I know, I know, I'm stalking Maldon! But believe me, you couldn't have got a more stunning day. Typically for this time of year, brilliant blue skies without hardly a cloud. Not typical though, real heat on your face today from the autumnal sunshine. Us girlies sitting chatting non stop, but still watching the barges getting ready to sail off along with the rest of the busy river life on the high tide, as we ate our lunch al fresco style...how wonderful is that for October. Hopefully days like this will make the winter feel shorter.
It's really weird, because it seems only a few months ago that I finished work, where in fact it will be a whole year next month! I look so different to how I looked at my leaving do, my face bloated and looking mottled from taking steroids and I was so overweight. In fact I looked and felt bloody awful!
I do still miss working with the girls, although I see the ones that are really close to my heart all the time. I really loved working there, but as I sat there today listening to them, I picked up on a real sadness in their voices and realised just how much it has all changed there. Their moral seemed so low and I was sad when I remembered just how many of my old work friends have already left in this past year or two.
I'm really glad that I have left as I would have probably been sacked for asking in my un pc way, what was going on if I had stayed.
Like so many work places now, the girls have given their all for so many years and I can see many more of them leaving either through upper managements choice or them feeling that they have no choice.
No one is anti change, but you do have to know why, don't you think?
I just hope that when the upper management move on and up the ladder, that they haven't lost too many good people on the rungs as is so often the case in business.

The world can be depressing enough, so please don't lose the personal touch folks. I was always told when I was a child, to smile and say hello to old people, because that could be the only time that some old people would get spoken to that day and a smile doesn't cost a thing does it.
This isn't just for old folk, but for everyone be it at work, at the supermarket, at the bus stop, or even at a traffic junction, anywhere in fact! So go on try it, because if you get a smile back, it really does make feel lovely.

Lots of love Debbie x

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