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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!

Friday, 8 October 2010

Changes a foot

A nice steady day today after yet another late night.

This time I had started reading up on the tests that I will be facing and it made quite interesting reading. I must say the NHS web pages are very informative and easy to understand, although some of the facts and figures about time scales and survival rates were a wee bit scary for bedtime reading.
It did make me wonder though, how long I would carry on left like this. Already it seems second nature to drag the tubes around, even if I do feel like Calamity Jane gathering up the tubes like a lasso when I walk around the bungalow. Calamity being the operative word for the amount of times I catch them on something or trip over on them.
Julie had to point out to me that the reason I would had to be alcohol free as stated on the web page, was in case I get the call and I would be turned away if I'd been drinking. This will be novel, as I do like a glass of something in the evening, but I guess there will be lots of lifestyle changes to get to grips with and that is a small thing to do for a second chance at a normal life.
Still I'm glad the dentist said I had good oral hygiene and that my teeth were ok, as that was another hurdle you could fall at. I shall became a champion flosser now.
One of the life style changes will definitely keeping better hours. I do tend to go to bed very late when I am off and not wake up till 9am and then have a 30min lie in on top. Actually I go to bed very late full stop, work or no work and function on little sleep, but since having the longer tubes, I don't get half as tangled up in them and get a good quality sleep now.
That was always a bug bear for me when I was married, as Tim would always be up hoovering about 8.30am at the weekend and I was still hanging to the mattress for grim death imagining where I would shove the hoover hose!

I got my confirmation letter from the Occupational Health doctor for the week after next, but I had to change that time as I'm at the hospital for my chest physio. It's now been put forward to next Friday morning. I also got my letter from Human Remains or HR, and they have actually put in the letter about retiring through ill health. Seemed scary seeing it in black and white, them bringing it up before me and it's all happening very quickly.

Went out for lunch at the garden centre with Julie and took mother too. Bless her, mother brought two very stylish tops for herself in the 'Dash' sale and her Christmas cards for my brother and sisters. I had to nonchalantly walk on so Julie could choose one for me, while I pretended to look at other things.
The trip did actually wear me out enough to make me feel as really weary when I got back home, but I really couldn't fall sleep not even for a 5mins power nap. My mind seems to be permanently buzzing at the moment with so much to think about... webpages, doctor's trip, how will I manage etc. Still I'll aim for bed before midnight tonight, maybe that will help.

Lots of love Debbie x

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