26th June 2008

Saturday
Felt extremely tired again and stopped in bed all day. As you know I usually go out on Saturdays but just couldn’t manage it today. I did make a point of saying to the kids though that I wasn’t ill just tired (I didn’t want them panicking again.

Sunday

I’m up dressed and bathed. Watched a little TV at night (well until midnight actually) I think I slept too much yesterday. Yes you guessed it couldn’t sleep Sunday night. Abi cuddled up to me and we watched Practical Magic together. Good mother and daughter bonding.

Monday
Up dressed washed and make up on today. Went to Worksop for an hour which gave me some fresh air. Tried to make fajitas for tea but stumbled at the last hurdle and john had to finish them off. Abi been to hospital today and they told her she is gluten intolerant.

Tuesday

Janet cleaned. I wanted to go upstairs to go through my wardrobe but chickened out. I helped John design some posters and fliers for his Fencing and Landscape gardening business they came out really well.

Wednesday
Feel good again today (3 days in a row) Nurse visited to make sure I’m ok and if I have any needs or requirements. They are still trying to find a cushion pad for my wheelchair. As I have lost so much fat off my bum it’s starting to hurt sitting in the chair for any great length of time.

Thursday

Went to visit Professor at hospital for 6 weekly check up. Everything is the same and I managed to do one of the breathing tests (first one in about 3 months I’ve been able to manage) so things must me picking up a bit)
Friday

Visiting the dietician again today to talk about my weight. I am managing to sustain my weight at 8stone so they think I will be ok. I can’t lose any more though.
As I hope you can see from this week’s diary I feel a little better this week. Mum and Dad said I sounded morbid last week but if I’m going to tell you all the truth about waiting for new lungs I hope you appreciate that I now have more downs than ups, it’s just the way it is.