No. 225. 'Up then down.'

 One thing I have learnt with this disease is to take nothing for granted. The progression seems to be gaining pace and everyday Chris is getting weaker. This morning he started to get some weakness in his neck. After the ups and giggles of last night, today he has hit rock bottom. He is totally miserable. When I told him he had every right to feel miserable he said he didn't, he always thinks there is someone worse off than him which of course there is, but that is beside the point. Who wouldn't feel miserable in his position. It is hard to get him to talk, but close to tears he said he missed doing things, working, the weaker he gets the less he can do. 

He went out around the yard for a little bit, but soon came back. He is quite breathless and that worries me too. He wanted to sit in his arm chair, but I had to get Karl to help as he was too weak to push himself up out of his wheelchair. I asked the palliative care nurse what would happen if he became too weak to be transferred before carers are sorted and she said he would probably have to go into cottage hospital in Helston. Oh, no, not that, please let him stay the same for a couple more weeks. Tam and Karl are off on holiday for a week on Saturday too, but at least my son and his wife aren't too far away.

I feel so very, very sad for him and it breaks my heart to watch him deteriorate bit by bit like this. If there is a God up there, he must have been having a very bad day when he thrust this awful disease on mankind.