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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!

Monday, 16 May 2011

My turn will come

I do wonder just how on earth I actually fitted in working full time in my daily routine, as it seems to take me longer and longer to get out the front door in the morning just lately.
Ok, maybe, just maybe if I got up before 9.30am I might kick start my day earlier, but as I rarely go to bed before 1am and then read for ages, I really can't see the appeal in early mornings.
But I was on a mission today to colour my hair and get to the shops to do my weekly shop before lunchtime, especially as I had messed up on the Internet shopping front again and only had a fridge left full of odd things like red chilli's, onions and peanut butter. Nothing that you could add together and make an actual meal, well not unless you wanted to puke violently afterwards and as I had spent all Saturday on the loo, I wasn't taking anymore chances!
Nor will I buy too much and try killing myself carrying it from the car.

Julie popped round just after I had got out the shower, which was lovely to see her. Bless her she is going on holiday on Wednesday and it's a bit of a sad moment for us. I usually go away with them and with another friend so poor long suffering Derek doesn't have to endure a gaggle of middle aged women all the time, but looks like this year I will be grounded.
I'm worried that Julie is suppressing her excitement of the forthcoming cruise because she doesn't want to upset me.
My darling Julie, I want you to go and have a fab time, please stop beating yourself up ok. XXxx Go and annoy Derek for me and Ooo bring me back a gorgeous Swede or Russian!

Holidays and transplants are a bit of a sticky wicket really, so if there is anyone out there with advice, please tell.
If I had realised that I wouldn't have even had the letter from Papworth to go and see them by now, then Ann and myself could have probably gone on Wednesday to the Baltic. But saying that, I do believe married couples should have quality time with their spouses however entertaining pushing me about against my better judgement on top deck of a cruise liner in a force nine gale or watching some knob head kidnap me and use me as a bowling ball just to get to the front of a queue in Spain!
I don't even know whether you are allowed to go on holidays if you are on the list or what?
Mind you the idea of flying again after last years fiasco, leaves me shuddering with horror.
Or trying to sort out insurance with some dip stick asking if you will be going rock climbing or white water rafting while you are there after you explaining you are on full term oxygen... duh no!
Or sorting out your oxygen supply so you can breathe in another country.
You need a bloody holiday to just get over that little lot!
I think I will be settling for a cottage with a hot tub for the weekend in the next county, smuggling out my oxygen concentrator etc, a crate of Pimms and my fab girlie friends who are my support team!

I did hear about another blogger today who is waiting for a double lung transplant too, so I googled her and she sounds so sweet with a wicked sense of humour. She 20 years old and she suffers from cystic fibrosis. Anyone who would like to look at her blog, it's kerryalexxx.blogspot.com. It would be good if we could swap advice as she's from Ipswich and hopefully will be at Papworth too. Fingers crossed.

So my plans went a bit awry today and I didn't get as much as I wanted to do, never mind but in the words of Rhett Butler 'Tomorrow is another day'... or was it Scarlet O'Hara who said it????

Lots of love Debbie x

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