… know what happened to me today.

When the alarm went off at 06:30 today I was sound asleep. One of the deepest sleeps that I’ve had for a while. And when it went off at 06:35 it awoke me again

When breakfast came round at 08:00 the nurse awoke me to eat it, and a relentless chain of nurses, doctors, specialists and the like continually awoke me throughout the day.

On the way in my bed down to an ECG scan I fell asleep twice as well.

In fact I’ve been in a deep sleep for most of the day today. Right now I just want to go to sleep again and I really don’t know why.

But at least after the panic last night when I had a relapse they are taking things seriously. They have examined my chest thoroughly, carried out a few examinations on my right leg and checked over a few other things

There was the dictaphone to check over too I was in hospital last night being seen to because of this problem that I have with the chest. They were busy arranging me and I was trying to make myself comfortable. There were some temporary blankets that somehow ended up on fire and some of the blankets fell off. I realised that I wasn’t as cold as I had been so I must be improving. I went out past the office where people like my friend from Munich would sit but it was empty. I was gradually being brought downstairs, I thought, presumably for another examination but I didn’t really know

We all also went to Vire last night, to the cathedral, but it was nothing at all like the real Vire. We drove there, drove through the town to see the sights. We had to follow the road round. We thought that this would be where all the signs were for various things and sure enough there was a sign for the cathedral. We went that way and parked, got out and then walked al the way down these steps to where the cathedral was and began to have a good look round

There have been so many people in here today interrupting me that it’s only now that I’m on my own.

My Welsh class today was a fiasco. There were far too many interruptions for me to concentrate on what was happening in the lesson.

Apart from that it’s been a busy day and I’m hopeful that they will eventually find out what’s going on with my body.

However I’m not to hopeful. It seems to me that with my underlying illness, my body is slowly breaking down and it may shortly be beyond repair. That’s really disappointing but it’s inevitable that this would happen.

With Waldenstrohn’s Disease, no-one has survived more than 11 years. I was diagnosed 7 years ago and I probably had it a year or 18 months before that.

My only regret is, as you know, the fact that they have taken so long to deal with this breathing issue – 18 months, in fact, but even that has been overtaken by events with my mobility issues.

There’s really no end to it.