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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, 26 November 2011

Lessons had been learned

hellooooo...I'm still here, not gone to any hospitals.
I was too tired after my long planned day out to the 'Thursford Christmas Extravaganza' in Fakenham, Norfolk to update my blog last night.
In fact I was actually so worn out, that I didn't know whether to cry or what when I got home.
Lesson one that I have learnt and this one is for anyone waiting to go on the transplant list: Fridays are when the National register is updated and if you don't want your nerves jangling like charm bracelet on your first day of being 'active,' avoid Fridays like the plague for booking an outing.

Firstly I didn't sleep well at all on Thursday night. My mind was like a coiled spring and didn't not want to relax even after a couple cups of herbal tea. All I could think of, was that old saying, 'be careful of what you wish for.' Big late now to start hearing voices.
Secondly: You nearly always have to get up early on a big day out, so straight away you are at a disadvantage, especially if like me, who likes her sleep and then hasn't slept well.
Thirdly; well I have no idea, as all the problems started blending into each after that! Ridiculous really, as what are the chances of getting a donor on your first day, especially knowing my track record of things never quite going to plan?

We stopped off at Swaffham, which is about an hour and a half from mine for a spot of morning coffee and as we now had now been given our tickets, it was a chance to text my sons where exactly I would be...postcode, phone number, row and seat numbers etc.
We set off again for the last hour or so of our journey and my hospital mobile phone went off with an unknown number flashing up...oh shite!
It was a hospital, but not Papworth. It was the girls from respiratory team, asking if I fancied coming along for the new doctors to meet me as a trial patient and earn a bit of extra cash into the bargain. After checking whether I would be hurt in anyway and being assured no, then I agreed.
It was then that I realised that had been Papworth , I wouldn't have had a 'Scooby do' where I was, as I hadn't bothered to look at road signs as we were being driven along and it hadn't even crossed my mind that they might ring while I'm in transit. I had only thought that they might ring while I was in the theatre, not on the coach. I hadn't made a contingency plan for that!
Would I have had to got off the coach and wait by the road side for a passing ambulance or what?! Oh blimey, I really hadn't thought this bit through.
At that point I did start panicking a bit, well quite a lot and bombarded my friend Greta with lots of what ifs. Though I controlled myself and didn't run up and down the aisle of the coach shouting OMIGOD waving my arms about like a windmill...I did think about it though... and I thought at one point that Greta was going to have to slap me around the face as in the old black and white movies to calm me down!
Ooo definitely a case of the vapours!

Once I had got myself calmed down again and stopped my gibbering, we carried on to Fakenham and went on to watch the show, with only the odd facial twitch to show I was under stress.
It was very pretty show once again, but when your mind is elsewhere, you aren't really going to give it your best attention span and enter into the spirit of Christmas are you?
I just wanted to go home, lock myself away and come out when the whole ordeal was over. Alas that wasn't going to happen and I found myself turning into 'pushy old lady' mode when I went off to the loo. There I was nice and patient, waiting for the person to come out of the disabled loo, when an old lady came up and started muscling in towards the door.
Strange, as I found our eyes locking and battle had commenced. My normal hapless expression had been swapped for a steely eyed glare...needless to say, I won, but only because the previous occupant of the toilet blocked the old girls way on their way out...ha sucka!
Blimey if ever I live to see old bones, I'm going to be one ruthless old lady from what I'm learning now!

So a fairly easy day today. I'm not planning on going far and I'm definitely taking it easier today.
When reading the instruction pack from Papworth for the 100th time, I had to chuckle where it said that 'you may not feel in control of your life.'
Blimey, I stand no chance as my life has always run riot!

Lots of love Debbie x

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