No.97. Turn the clock back please.

This time last year we had brought Chloe up to start her first year at BIMM, Chris carried all her belongings up four flights of steep stairs, this year he had to sit in the car and wait while Chloe, I and one of her friends who came to help, did it. What a difference a year makes. I'm kind of scared to wonder how Chris will be for the start of Chloe's third year next September. I can't believe he only started getting the first obvious symptoms in January. How life has changed for all of us. I just want it back the way it was. I want Chris well again.

I have to learn to be not so protective too. My urge to care for Chris can sometimes over ride his need to be independent and he is too nice to tell me otherwise sometimes. I was the same with the kids, it's hard sometimes to not be that way. On the other hand Chris tends to bury his head in the sand about his MND, so we both need to find a happy medium.

I can't say I enjoyed pushing Chris around Brighton today, so many hills, so many paths not quite geared up for wheelchairs, lifts not working in a couple of places, it certainly opens yours eyes up to the problems wheelchair users can have when you have to use one.

Of course I felt I absolutely deserved an amazing Ferrero Rocher ice cream sundae along with Chris and Chloe after all that. Not quite diet fare, but it was gorgeous. It was in a fantastic new Italian ice cream parlour that has opened up in Brighton. We did so much walking and as I write Chris and Chloe are both dozing on the bed. We are all a little 'cream crackered'!

Tam phoned as two people had phoned her about Chris. One was someone wanting to know if they could deliver the PEG pump and feed next Tuesday and another from a nurse,Tam said, who didn't normally come down to our end of Cornwall, but was coming down and would like to see Chris. I can only think it is the regular PEG nurse. Tam is going to phone them back and confirm. 

We can't get away from things even when we are away. Next week is filled with a Dr's appointment, PEG nurse appointment and a trip to Treliske for Chris to have a respiratory check up plus the pump stuff will be delivered. I think the nurse who did the the pump training is phoning to come back and go over things again. It's great of course to have all this support, but sometimes we think, 'Just give us a break please.' This bloody disease is all consuming. TURN THE CLOCK BACK PLEASE !! And make this all go away.