Friday 3 April 2015

No. 166. Countdown to diagnosis (3)

On April 4th 2014, Chris went to Treliske to have a spinal MRI scan to see if there was any spinal damage that might be causing his symptoms. I really hoped it would find something, finding something would be good, finding nothing, not so good. It was a noisy experience for him, but otherwise OK, the waiting game continued.

Around this time the festiculations (muscle twitchings) were now happening all over his body, like little tiny mini explosions, constant and never ending. When I held him close at night I could feel them and still do. Thankfully they don't keep him awake, though I have no idea how he sleeps through them. His speech had also gotten more slurry and his limp was a bit worse. 

Back to the now. We had someone come and visit the other day and I answered the door and waited for Chris to come. I went to check on him and there he was prostate on the floor. He had been so desparate to go and comb his hair that he forgot his stick and fell, he grazed his top lip and cut the inside of his mouth, though thankfully that was all. In his words he did a proper 'Stephen Hawking' fall (as in the film). The moral there for him was to not stress over his hair being tidy and to make sure he uses his stick if he walks. It took us a while to get him off the floor and as always we giggled about it after, but it does worry me as I don't want him to really hurt himself.

We are moving to the bungalow in four days, there will still be some decorating to do and the ensuite to put right, but otherwise it will be ready for us to move in to. It has been very tiring for me and difficult for Chris as he can do nothing to help, he says very little about it, but has said he feels useless. I tell him he isn't, but I don't think that is much consolation to him. I hope he will be happy there.

I always wish I could turn the clock back to when Chris was well, but never more so these past few weeks. I wish life could be the same as it was, that he was still farming and out with his beloved cattle, I often joked that he loved them more than me. We both wish that we didn't have to move, that MND hadn't entered our lives, but it did. Life has changed for ever and there is nothing we can do about that except adapt, take life one day at a time and be grateful that we have some where more suitable to live in.

MND is such a vile disease, stealing so much of who we are and what we have by stealth, bit by bit. I shall hate it always.