Saturday 5 July 2014

No.19.Sometimes.

A friend said to me that it was wonderful that we were all so positive. Well we try, but some days MND gets the better of us, well me anyway. Sometimes it is easy to pretend that this isn`t happening, other days I go back into protective mode. When Chris was first diagnosed I was almost afraid to let him out of my sight, that was so silly, but it were as if MND were going snatch him away right before my eyes, there and then. Sometimes I don`t want him to be outside on the farm, I want him in where he can be safe. I know that is ridiculous and Chris must live his life and I am really trying to resist the urge to smother him. I know how important it is for him, to carry on as best he can. Sometimes I am kind of going phew, as there have been no more drastic changes as yet, but then I think, don`t get complacent, because he might suddenly go down hill. That`s what this disease does to you, it leaves you on edge, waiting for the next sign of it`s onslaught, so no matter how positive I try and be, MND is always there, waiting in the wings. The thing is with MND, everyone ends up the same, but how long each person takes to get there, that is the unknown factor. Not knowing the time scale, that`s the scary part. But never the less, I must refrain from nagging Chris that he should be in more, that he is doing too much,  Sometimes I should just leave him be. Sometimes being positive can be the hardest thing to do.

So today we are taking one of those reality steps, searching for a new car, as I said before, our little Clio just can`t take a wheelchair, let alone a mobility scooter. We don`t know whether to up grade to a full WAV car or just one that can store the scooter. Chris has only just applied for PIP, (which was disability allowance) and apparently that takes ages to come through, so we thought we would see what we can find second hand. Getting one of those big van like cars will seem a bit like `giving` in to the MND, which of course is just plain silly I know, it`s just being practical, but it`s just another thing making it all so very real. I have a vague idea of what else may lie ahead for Chris, but I guess until it happens we are never going to really know what the future will be like and where this MND journey will takes us and sometimes, yes, we are just plain scared.