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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!

Tuesday, 12 April 2011

On your starter's orders

Some days you just feel that you are always on the run or playing catch up.

My Docobo malfunctioned this morning. It had been playing up last night by not reading my stats, but this morning it didn't even registrar that the power was on.
Of course like the house goddess that I am, I have filed the instructions away next to the docobo for moments just like this... Filed on the floor.
Ok not the best place to keep them, actually keeping the booklet in the docobo box which is stored in my cupboard probably would have been the best bet, but for the last six months they have sat on top of my magazines no problem, till I decorated.
After much frantic searching, but no results, I called the Respiratory team to get the number for the care call department from them and in the mean while one of them was phoning me to see if I was dead.
Thankfully the lady from the care call department came out with another to replace the deceased machine, but away we went, mumbling something about it burning out. Mmmmm... now should I be worrying?!

My eyes are still very sore, but I still went for my opticians appointments as I had already cancelled last week and I need a back up pair of sunglasses, plus my latest glasses from their opposition have never been right for me.
They were very nice to me and after squeezing orange dye into both my eyes, agreed that my eyes were very dry, but felt it was more likely the skin around the eyes was the main cause of irritation and me keep rubbing them even without knowing I doing it, wasn't helping.
I left there with a snazzy pair of glasses and another pair of prescription sunglasses on order, plus £310 less in my bank balance and bright orange panda eyes thanks to the dye soaking into the dry skin around my eyes. I looked like a 80's throw back, all I needed was hair bobbles and leg warmers!

Still I had a lovely evening with my eldest son who stayed over last night and a very early start to the morning today, as I had to drive him to the airport at 5.30am.
I have forgotten what that time of day looks like, let alone go outside and actually function. The nearest I get to seeing that time of day, is glimpsing it through a chink in my blinds as I stumble my way to the toilet!
I got back at 6am and went straight back to my still warm bed till 9am. I was woken by Hannah asking way my heart rate was up yesterday? No idea, as I felt ok, but I did feel as if I had been accused of going out pole dancing or something.
I am expecting another telling off tomorrow as my heart rate was up again tonight.

Mother actually had her cyst removed and bless her she is really suffering. I keep trying to explain to her (every 3mins) that she mustn't remove the plaster on her back and to explain to her that it's the stitches in the cut and the cut it's self, that's hurting.
I also had a lovely relaxing massage on my back, which was much needed as I had my moustache waxed off...ouch... and had my impinged shoulder cuff worked on... more ouch.
I reckon that when I get my transplant, I will become so fit, but will look like quasi-bleeding-modo where my shoulder is shagged thanks to carrying the oxygen unit non stop!

Ah well just another couple of fun filled of fun and follicks.

Lots of love Debbie x

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