Tuesday 9 December 2014

No.131. Chills are multiplying.

Chris has had a couple of low days this week although he is pretty good at getting his mood back up again. The MND is progressing and Chris is starting to really notice it now. Getting around, especially at the end of the day, is getting harder for him and his speech is deteriorating a bit more. These things, coupled with the choking problems, are starting to get him down a bit and he says he hates it so much. I could get way more vocal than that about this bloody awful disease, but there are no words yet created that could fully describe how I feel about MND. I think the main reason he is feeling a little low though is because he is going a bit stir crazy because he hasn't been able to get out on some days as the weather has been so awful. That part is really tough for a farmer who's life was so involved with being outside and working all hours and in all weathers.

When he has gone out his legs get really chilled. From the knees down they are like blocks of ice. While we were watching the TV I wrapped his lower legs in a fleece and then I put them on my lap and hugged them for an hour, but they were still cold. Is that to do with the MND? I suppose it is. I think he needs to wear his thermal underwear and fleecy jogging pants rather than jeans when he goes out. I'm pretty sure riding around on a mobility scooter is not really good for keeping the legs warm. Wasting muscles and lack of use probably adds to that.

I am starting to feel sad for Chris because the rest of us will be able to enjoy our Christmas dinner, but his meal won't be the same. He says he doesn't mind as he doesn't fancy food as much as he used to, but I will still feel bad for him. I am trying to think of ways to adapt the traditional dinner other than just pureeing the whole lot. Maybe I can just puree the turkey with gravy and mash the veggies separate? We'll see.

On a happier note, Chloe will be home on Friday night and we cannot wait. It will be wonderful to have her home for Christmas and have all the family back together again. MND is not ever going to stop that happening and the one thing it can't steal is the love we all have for each other.

The chills might be multiplying in Chris's body, but his fiery spirit is still burning bright.