HELEN'S DIARY: Living hell of life on the waiting list the past week commencing 13th October



SATURDAY

MY aunt came this morning and we had a fab day in Meadowhall, had a meal and shopped. She couldn't believe mum and I did this every Saturday but realised that this really was the only enjoyment I have outdoors that is secure and easy for me in a wheelchair. We then sat all night watching TV. Fantastic day.

SUNDAY

MUM, Abi and I had a lazy day reading and watching TV. I slept for five hours in the afternoon as I hadn't slept the night before. Don't laugh but I am falling to sleep every time I put on my Open University DVD. Its not boring but I'm sure there must be a subliminal message saying sleep!

MONDAY

THIS illness is one of the worst and unfair illnesses for your family to see you go through. There is never any respite, there is never a day when I feel better and need less help, there isn't a day when your family aren't under the extreme pressure. It's now been five years of going through agonising pain, being breathless and two years waiting for the call for a transplant. It's a living hell.

TUESDAY

I REALLY want to be at home and when I get there I panic thinking can I manage, but I can't at the moment.

WEDNESDAY

IT'S mum's birthday today. I posted her card from an online shop. Did tiny bit of shopping and then wanted to get home and sleep as didn't have a good night.

THURSDAY

HOSPITAL visit today. My nurse thinks I am having a build up of carbon dioxide in my body.

FRIDAY

MY consultant wants me in the hospital for tests as they think I am having carbon dioxide build up and if I fall to sleep I may not wake up. I am getting headaches all the time and not sleeping at night then dropping off in the middle of the day and not waking up without being touched and more or less shouted at. Abi overheard all this and was devastated, she went to work but then cried uncontrollably. They had to send her home.