I think the last blog was more about being angry than sad and I think it's pretty much OK to be angry with this disease.
Anyway, yesterday was back to being positive. We had our raffle and MND awareness stand at our village church fete and Chloe did some performing like she does every year.
The raffle did surprisingly well and we made £85 in total. I'm not sure about all the awareness info. Only one person wanted to look at it and another asked me what it was, so I'm not sure a great deal of awareness was achieved. Mind you, it was hard to miss six of us walking round with MND T shirts on and we had a last minute rush on the raffle so maybe we did. We were pleased with the money raised.
Chris took his old Nuffield tractor down to use as a 'Guess your age' game. It is still very much a working tractor and still one Chris can drive and one that is most definitely not going in the machinery sale.
I also somehow, managed to win the whisky raffle at the fete, how perfect for my whisky loving husband. I never usually win anything, so that was a welcome surprise. Chris also won a bottle of red wine. We aren't big wine drinkers, but we had a couple of small glasses during the evening. On reflection, maybe someone with balance problems should have stuck to the one glass. Chris always pops in to say goodnight to Chloe, but he fell over as he entered her room. Luckily he didn't hurt himself ,but it was a lesson learned.
Chloe performed some covers and originals at the fete and one of them was a song we didn't know about. (Look up Chloe Fior 'Paradise' on YouTube if you would like to hear it). When she found out her dad had MND she was still up in Brighton, studying her degree at BIMM. We went up to visit her a week after, but it was really hard for her during that first week, she really needed her dad and him her. She wrote this one particular song as a way of dealing with her emotions. Chloe has a way of writing that makes you look deep, but it was very moving to know exactly how she felt, that first week after diagnosis.
On a different matter, Chris had a letter through to say his PEG would be fitted on the 27th of this month, really soon. I guess that's a good thing. He weighed himself in the morning too and he's lost 3 lb, which is not such a good thing. He still has the weight around his middle that he had gained, so I think this must be muscle loss, if it is, 3lb is pretty scary. Maybe that is why his balance is worse, perhaps it is from the core muscles.
Well yesterday ended on a good note with us all feeling we'd done something positive to fight MND. I'm under no illusion that there won't be more low days to come, but the challenge is to keep the positive days flowing too. What I said before is true. This disease does take over your life, of that there is no doubt, it's scary and unfair and very cruel, but sometimes life is cruel in lots of different ways and it is up to us how we deal with it. We have to fight it when we can and not beat our self up when we can't. This round to us MND.
