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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!

Wednesday, 31 August 2011

Harvesting thoughts

Another test under my belt today and this one, the barium swallow examination, was quite straight forward and not uncomfortable in the least, although I will probably be passing chalky poos for the next couple of days!
Strange, you don't see white dog poos anymore, do you? I always remember seeing them in my childhood days, something to do with dogs eating bones I think.
Sorry I digress... back to my poo.
The test wasn't unpleasant at all, in fact I was so thirsty from not being allowed to drink since last night, that I would have happily drunk another glass of the chalky mixture with a hint of mint...Mmmm
Why is it, that I still smile when having an xray taken? Does anyone else do that or am I the only vain nutter?

It was really nice driving to the hospital this morning, as it would have been the time that I would have been going into work should I still been working at the uni and I was able to listen to the Chris Evans radio show on BBC2. That is one of the things that I miss about not going to work, as I don't have a radio at home.
I used to love listening to 'Pause for thought' slot on his show and there was a particularly good one on this morning given by a female Prison Chaplain.
She was talking about it being harvest time and driving in, it was really evident that we were coming into Autumn rapidly, as most the fields had already been ploughed. Must have been so much easier for the farmers with all this rain.
But her point was, how everything has it's time and if things weren't working out smoothly for you and ideas had to be delayed or a particular plan hadn't come together properly, then maybe it wasn't the right time just yet. And I couldn't help but compare this story to my own delays with the hospital and I truly believe that she is right.
I have to wait for the right set of lungs, don't I as I can't just use any old set that comes along and ok I'm facing delays now with appointments, but only slight ones in the whole scheme of things.
After all if these tests had come through the other week when mother had her chest infection, then who would have cared for her then and it gives me a bit longer to lose more weight, which will benefit me to survive the transplant?
When I was at work, we used to see so many students that had set themselves impossible targets, where they had signed up to do maybe a nursing or teaching course, but they had very young babies at home and they would stretch themselves to the point of breaking.
Your heart went out to them, but you really wanted to say to them that maybe it wasn't the right time in their life to start a degree, maybe in a few years would be better for them?
So yes in my view, that lady on the radio was speaking wise words.

Talking of Autumn, along with the ploughed fields and the overwhelming smell of broad beans in the evening air, were other little signs that Autumn was coming, like it being colder in your homes than being outside!
Already our homes are cooling down and at one point this afternoon, I seriously contemplated putting my heating on.
When I got home from Broomfield hospital, I fell asleep in the armchair and had great trouble waking myself up again, as I was snug under my throw and it was really quite chilly in my bungalow.
If I hadn't been going off to my second hospital visit of the day at St.Pete's hospital for physio, I would have packed all my summer clothes away, as I actually think that we've had it for summer sunshine this year now.
Sad.
When I think of the lovely bits that I brought to wear for the hoped for sunny days and I've worn them probably once if I was lucky, I feel cheated. And now if I lose the target weight set by Papworth, then they will be too big for me next year. Still maybe not, if I've had the transplant by this time next year and the steroids that I'm bound to be put on, blow me up...then win some lose some as they say!

Lots of love Debbie x


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