Up the creek without a paddle

Well here's a conundrum. I've read the letter from my specialist to my physio and a) I have a new title; End stage lung disease secondary to bronchiectasis with severe airflow limitation. Well that sounds pretty dire, definitely up the creek without a paddle, but in my case without a transplant! As somewhere between me saying goodbye and him dictating his letter, b) I'm coping extremely well given the extent of my disability... all because I went on holiday twice. So I'm now to be reviewed again in October.

Bugger... When the music stops; all sit down. Talk about have your head scrambled! I nearly refused to do my sit to stands out of protest in rehab as I was so pissed off. I was told again just how 'stop start' this transplant business is, but although I'm hearing it and understanding it, I just feel so deflated and just so damn tired of it all. When I said 'sod it, I'll book another holiday for next year then', I was told I'd never be taken seriously if I'm well enough to keep going on holiday. I hardly think you could say that either one of the holidays were plain sailing, excuse the pun as one of them was a cruise, but they took every ounce of determination in my body to get through them.

So how am I end stage of an illness, but not ill enough????? Answers on a postcard????

Be glad to go to bed tonight as this has been zooming around my head ever since Thursday and now I feel like a wet rag thanks to my ramblings in my head finally stopping at 2.30am. I guess I'll sleep tonight from pure numbness.
I'm also in pain again from having physio on my impinged shoulder cuff. Bless him he looked mortified when I told him just how sore it had been after last week's torturing, so this week I had a small amount of torture, a bit of heat and a couple of acupuncture needles thrown in.
He did say carrying my mother's new hanging baskets from the car to her bungalow like a 'ye old milk maid,' probably hasn't helped matters this week. . Ironic that my impinged shoulder cuff is caused through the oxygen that is treating my 'severe airflow,' as the specialist put it. So perhaps sitting with balloons tied together in the shape of a comedy dog hat on my head at Julie's father-in-law's 80th birthday party, while my youngest son was rocking Milton Keynes with his music and meeting Liam Gallagher on Saturday night, is the way forward for me.

So no more trying to make the best of the hand your dealt with... No more life for me from now on! Ah buggar that, I'll just leave my make-up off and my mask off in future and my specialist can see the real me!

Lots of love Debbie x