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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, 27 November 2011

Nerves are a little frayed around the edges already

I am so tired.
I suspect it is going to take me a while to get into the swing of this 'will they call, won't they call?' to the point where I can just go to bed and not actually worry about getting the donor call in the middle of the night.
My bed which was my place of refuge, is a bit unsettling now at bed time. Last night was the first time in a long while, where I wished that I still had a husband or a partner to cuddle up to and know that I wouldn't be alone when that phone rang.
I know that my youngest son would be here in a flash and my eldest, as quick as he physical could and I know my friend would come zooming around straight away, but that fear of being on my own while waiting for reinforcements is all a bit daunting. And the worst thing is...I could still be feeling like this in a years time!
I also had a dream last night, that I had got the call and I couldn't contact anyone and they had sent a fire engine instead of an ambulance. For a horrible moment, I couldn't work out whether I was dreaming or not. Still it would have been nice to wake up and find a man in uniform in my bedroom!

It's tubby club weigh in tomorrow and I don't think I've lost any weight this week, mainly as I haven't really eaten properly to start with and when I do it is followed by waves of nausea and uncomfortable panic attacks, where I come over hot and flustered.
What I'd give for just one night on the brandy. It's not as if I'd drink more than two anyway, but I'd just savour them and make them last.

I went to see Derek again today and I realised that my heart is actually stronger than his...how weird is that. He actually looks so well sitting there in his casual gear, while wired up to the hospital monitor and there's me opposite him looking far from rosy. Talk about a creaking door going on and on.
I did feel so sorry for him today, as it has hit home that all the things that he really enjoys, like skippering the tall ships and organising all the scenery for the village pantomime etc, will all have to take a back seat or totally change.
It's hardly likely that he will be up to constructing the scenery for this year's production now, although if his boys were able to take over, than at least he could still take part by advising them. But in my view, if it's someone else entirely, than he would be best to stand down and let them get on with it...too many cooks and all that.
As for the skippering, well once you've had a heart attack, Derek says that sadly you can't be in charge of a ship anymore. I don't actually know, but that does sound feasible. You can still sail, but not be in charge of others apparently.
He was very argumentative today even though he was still smiling at the time and when we were trying to help by suggesting things, he wasn't having any of it. He always had an argument ready for why he wouldn't be able to do this or that.
I know oh so well on how he feels. Like me, he likes to be in control and that is one hard mother to relinquish. He will experience, despair, anger, hope and utter bloody confusion in all sorts of random patterns.
At the moment he doesn't know what they have decided to do with him, as his angiogram isn't scheduled until Tuesday. It's the unknown which I think is the worst.
But whatever they decide, I know he will get through it and come out through the other side as strong as ever, it will just take time to sink in.

I'm off to bed now for hopefully a good night's sleep.

Lots of love Debbie x

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