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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!

Thursday, 2 June 2011

Legs... Ssshhh go to sleep

Ouch my legs were keeping me awake last night.
I think they call it 'restless legs syndrome,' I call it walking up more steps then my heart and lungs could happily manage in the day time and they were beating my legs up about showing off and having a go! I really didn't know where to stick them last night, so they were hanging out the side of the bed, then under the covers, then stretched out and then doubled up.
I just wanted to sleep.

I woke up today feeling very groggy and feeling every minute of my day out yesterday. It isn't all about the physical side of going out for the day, but the mental logistics of making sure I have everything in place too takes it out of me big time too as I'm a real worrier now.
Little things like which tank do I take? Do I have enough oxygen in my DD tank which weighs a ton and I better not take my liquid oxygen as sand could get into the works and clog it.
I am on my fourth unit now and the company get a bit tetchy when I call and ask for a replacement.
Or when did I last put new batteries in the pulsar? Even though I knew it was the last time I used it, which is when I had my angiogram and I have a kitchen drawer full of replacement batteries, I still panic and get myself worked up checking everything over and over again.
Will I be able to find somewhere to cough up my lung contents? Have I enough tissues and a carrier bag in case I have to do it unceremoniously behind a hedge!
And as we know already that I had a melt down about what to wear and took enough clothes for every season!
I sooooo look forward to the day when I just walk out my front door carrying just a handbag.
No 'go faster' wheeler, no wheelchair, especially no oxygen and not having to worry about getting back to take countless drugs. And just having a friend there as a friend and not as a carer.
Bliss.

Today was very humid and it would have been lovely just to have a good downpour and clear the air.
I was stuck at home today awaiting the arrival of my new mobile phone. I'm a bit of a technophobe and I hate new things with knobs and buttons that give me umpteen choices on doing things wrongly.
Sam would always say that I was a 'button pusher' when we were doing our ECDL courses. I could never wait for the instructor to finish what they were saying before my finger couldn't stand the temptation any longer and pressed something that did the complete opposite of what they were trying to get us to achieve.
I wasn't popular in classes, apart from with the thick ones that I made look proficient, as the instructor would have to spend ages trying to sort out just what I had pressed!
But I have been trying to sort out a good mobile plan and I think I have cracked it this time.
Anyway, muggy air and hard to breathe today. So thankfully no steps to climb, just a TLC day for me.

Lots of love Debbie x

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