Thursday 9 October 2014

No.101. Don't spoil tomorrow.

Yesterday was a topsy turvy kind of day. The enteral pump nurse and the MND visitor rang to rearrange appointments, which at least gave us a couple of days breather this week. The enteral pump equipment eventually arrived after the driver got lost, it was hard trying to give to directions to someone who obviously didn't know the area.

Duncan Warren, from BBC Radio Cornwall phoned as he wants to come and interview Chris for his radio show and to promote the fashion show as he is hosting it. Chris is looking forward to that and to meeting him again after many years. It'll hopefully raise some MND awareness too.

Chloe texted her dad in the evening. She was feeling home sick, but I think she just needed to talk to her dad more than anything, it is hard for her dealing with all of this when she is so far away. I think talking to Chris helped them both.

It was also sad today to hear of another MND Warrior whose health is failing. It makes me so cross and upset that anyone has to go through what this awful disease does to the body. It seems to pick on the nice people who also turn out to be some of the bravest. It truly is a cruel disease.

We don't even try to think that far ahead to when those days will be a reality for us, we try and concentrate on the here and now. I like to plan ahead for practical things, but I can do that with detachment. We try to keep the scary, future stuff locked away. No point spoiling today with thoughts of future tomorrow's.

One tomorrow I do want though is the one where they find a cure, we need one so badly.