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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!

Sunday, 17 July 2011

Some you win and some you fight another day

Last night opened up a whole new slant on the word 'nightmares', as this morning I woke up feeling like a field of galloping horses had jumped through my window in the night and trampled over my rib cage while I was sleeping.
Sweet mercy I'm sore today. Thanks to yesterday's rather violent coughing fit and then the continuous replays throughout the day of what seemed at times, non stop coughing, my rib cage and throat took a battering.
Today however my cough sounds like a cat trying to cough up a hair ball... Mmm glamorous and I have to hold my stomach every time I cough.
But still, the other feelings of melancholy are disappearing and my legs and headaches are beginning to subside into a distant memory too. Plus as long as I just eat chocolate, I have the nausea licked too! Bonus!

Actually I don't just eat chocolate, just in case my consultant and any of my care team are reading this. I also had porridge for breakfast... less dangerous than bread as I found out to my cost yesterday and then my special roast lamb for dinner.
I had invited Oliver and Reni around with my ex husband for their first year wedding anniversary dinner.
It did seem at one point that Oliver was actually cooking most of the dinner, but he does cook the worlds best roast potatoes.
Bless him, talk about having to sing for your supper, but he does observe before I do when parts of me are turning blue and he takes over without alarming me.
By the time they left, my kitchen was spotless thanks to Reni and my ex, plus my bed sheets had been changed thanks to Oliver. All done without any 'pity' looks, but as if it was perfectly normal to be invited to dinner while working non stop over their vibrant chat and laughter.
Whatever we didn't achieve in our marriage, we certainly did achieve something very right with our children. He has a very big kind and sensitive heart that boy.

So hopefully this week will start on a better note. A couple more hot baths and my ribs will be as good as new. And of course it's only eight more sleeps before the big day at Papworth.
I do hope that I am not pining too much on this meeting and that I won't come home with my dreams crushed. Rightly or wrongly, I have tried to put that aspect to the back of my mind, but it's a sneaky little thought that keeps wheedling it's way to the front again.

Julie asked today what would I do if they said that I could go on the list, but not until the next financial year?
I said defiantly that I would go on holiday to Turkey and sod the lot of them, but I could see in her eyes too that, that the idea was a brilliant and feisty one, but a bit of a non starter too.
For one thing it would cost an arm and a leg to hire the oxygen for the four hour flight, if I am allowed to fly at the moment and to use whilst over there.
But really we both know that sadly however much I hate being a defeatist, I have lost my nerve about travelling long distance now and I get so damn tired so quickly now and when I get tired, bigger problems occur.
I'm sure it can be done, but I haven't the energy to sort it out at this moment in time. Maybe if they say no, then my fighting spirit will come back with a vengeance and I will have another plan, who knows?

Lots of love Debbie x

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