One year on

I had a message on my face book page last night, showing me what I had put on my status around this time last year and it just goes to show that you can get used to just about anything in life and how things become the norm.
Surprisingly it is now been a year since I have been on full time oxygen, which basically means 16+ hours a day of oxygen. Sometimes it feels a lot longer.
I'm still annoyed most of the time that I have to keep retracing my steps because of the damn tubing getting caught on or under things and I still hate the way that I can't just dash out the bungalow if I am late for something, because I have to fill up my portable before I can go anywhere.
But however ill or hard done by that you feel, you get used to it as it becomes the norm and it's business as normal.
I can't actually begin to comprehend how I will feel when I do or if I do get this transplant? What will it feel like to feel normal?

My ex came round to cut my lawn this morning and tidy up the garden for me and I decided to cut the hedge.
A year ago there is no way that I would have been able to do that, actually even a month ago I wouldn't have been able to. I would have been clinging on to the hedge for grim death barely able to breathe, but somehow even though my health has deteriorated, there I was tidying up the hedges. Ok my breathing was terribly laboured and there was that light bulb moment, when you realise that was a really stupid thing to attempt to do, but I did it.
How?
Not working full time anymore has helped me beyond anything that I could have imagined. When I was still at work, I thought that retiring would be the end of me, that I would have nothing to strive for and go into a decline. How wrong was I.
So what has changed? I guess going to rehab and actually listening to what the physios are telling you to do and actually doing it has paid off as I am stronger and managing my energy levels in a more productive way.
Yes I still use my wheelchair when I am very tired and I still drag odd shoes, tissue boxes, books etc around behind me caught up in my oxygen tubing. My stats are still unpredictable and scarily low at times and I still can't relax in a bath properly without bringing up the contents of my lungs every time I try and lay down in the water.
And I still swear and stomp about at the injustice of it all... but shite happens, deal with it.

So tonight I had a lovely meal out with friends and I looked like everyone else around the table, eating, drinking and discussing the whys and wants of the world around us until it was 9pm, and then like Cinderella I turned back into the other me, the me that needs oxygen therapy to survive. But it wasn't as awful as it was a year ago, as like I said, it's amazing what you get used to. Though having the hope of a second chance from Papworth has helped big time.

Lots of love Debbie x