Wednesday 15 October 2014

No.105. 'I Love Life!'

Yesterday we got back to the reality of MND in our lives again.

Our main cooking source is an Aga, ours is a very old oil conversion and Chris always used to service it, but as it involves a lot of lifting he can no longer do it anymore so we had to get someone in to do it instead. Chris said he didn't really mind watching someone else do it, but I'm not so sure he enjoyed signing the cheque to pay for it!

The enteral feeding nurse popped back after lunch to refresh the training and helped me to set up Chris's first night feed ready for the night. I think the hardest thing for Chris will be sleeping in a semi upright position. I got him one of those wedge shaped pillows to help. The night feed went fine, Chris said he was a little restless sleeping semi upright and the pump alarm does prove to be a very useful alarm clock!!, but that's another first over with. I asked him if he was hungry now and he said yes, now there's a surprise, I'm glad he still has his appetite.

Chris has been choking a little more on his drinks, I think we will have to keep an eye on that one.

I hate how we have gotten used to all of this. MND is our normality now and we really wish it weren't so. I think it is important that we do adapt though, I think human nature makes us, else we would be wallowing in self pity every second of everyday. I think Chris is fortunate that his MND isn't tearing along at breakneck speed, well it doesn't seem to be for now anyway. We have to be thankful for any kind of blessing on that front. It is our 20th wedding anniversary next week and I have told Chris I will be very cross with him if he doesn't make it to our 25th. Joking apart, there are one or two miles stones we would love him to make, that of course would be one, but the main ones would be to reach Chloe's 21st in two years and her graduation from BIMM, we really hope those ones will be achievable. Chris has many reasons to fight to stay alive, we all need something to fight for outside of ourselves. 

MND is nature's most callous thief, it steals so much in the cruelest of ways. You will steal Chris's future MND, you will steal away his physical abilities, but you will not steal Chris's spirit and you most certainly won't steal his fight!!!

In Chris's words."I LOVE LIFE !"