Unlucky

Well it's nearly a year now since the diagnosis. It's true that we didn't expect to be doing so well. He's still walking, although he's much slower now. People are noticing this and commenting, but they are also saying how lucky he is to be doing so well. I guess that's true but pardon us if we don't feel so lucky.

A year on and we've been to New York, we've had a big Christmas Party, he's still working full time (more or less) and we're off to Venice next month. So shouldn't I be feeling more positive? I am reminded of a remark made to me some weeks after he was diagnosed, when a well meaning person said "So, you must be getting used to the idea now?" Used to the idea? What did that mean? Which part? Used to the idea that I know my husband will die young, will die before I will (unless I am struck down in the meantime)? Or used to the idea that life as I know it will never be the same again? Used to the idea that slowly he will lose all muscle function and become completely reliant on me?...You get the idea.

I have been feeling pretty crap about it all lately. I have retreated somewhat from the public eye and for the most part, avoided contact with those I don't absolutely have to see or speak to. My tolerance level has gone down. I just can't be bothered with small talk. I think I'm ok at home - with the kids and with Roch and although it's sometimes a strain at the start of my shifts in work, before I have made the transition to 'Missing' and slipped into professional mode, after a while there I settle into the tasks and routine and MND recedes from the forefront of my brain. It's a relief.

You know what? I don't think I'm used to the idea yet.