When I got my diagnosis in November 2007, there were statistically only even odds of seeing Christmas 2008.
So I guess I should be grateful, nearing Christmas 2009, that I'm still here. And although significantly more disabled than 12 months ago and with some respiritory weakness I can (on good days) even envisage making it to Christmas 2010. Despite this, gratitude is not in abundance.
I don't wallow in self pity. I won't give up on something until it becomes impossible. But unlike other MND sufferers I've "met" online I find it impossible to count my blessings and be grateful for what I have because it is such a small fraction of what I had before. Its like a Premiership footballer being transferred to a Conference league team and expecting him to be grateful that he makes the team sheet.
I don't normally whinge too much, because there really is no point, but I don't want to be slowly shutting down without people having some idea of what this is like and knowing who I now am.
My world has shrunk. Observation is almost the only aspect of participation. I remain sane by shutting out thoughts of what I can no longer do. This is effective but isolating. Talking to friends about everyday activities reminds me of what I can't do. My contribution to these conversations is limited to what I did in the past with ever fewer current reference points.
There are so many things I miss. Going for drinks or a meal with friends, driving, working (really), playing football and squash, cycling... the list goes on. But what gets to me more is the almost complete inability to do the most routine things without assistance and having to plan these activities to coincide when assistance is available. Eating, drinking, going to the loo, blowing my nose, putting on a coat, going out, coming back, every detail has to be thought about in advance to ensure I don't find myself in a situation needing assistance when none is there. I'm getting much more cautious about going out by myself. Recent attempts to request assistance from a passer-by have resulted in bemused responses and obvious discomfort as they struggle and fail to understand me. The Iphone which now hangs round my neck is rendered useless by cold inanimate fingers and the weight of my jacket sleeves paralising my arms so I do feel pretty vulnerable and would be struggling if I had a problem. I don't know at what point physical limitations or that fear factor will take away the last element of independence, but they haven't yet.
So, back to that lack of gratitude. Well it is largely due to what this disease has robbed me and 3 boys of as a dad..... on which more I'll write shortly.
I promise I will make the next post festive and cheerie!!