In New York

In New York

Saturday, 22 January 2011

Random musings and a mother's comfort

I asked Roch today if I am ever impatient with him now. He says, no more than I ever was. I'm glad about that. Yes, impatient wife - always was (how annoying he can be at times). I read an interview with Dianne Abbott MP in the Guardian today. I share her 'most unappealing habit' - wanting to win an argument. Mostly I just want to win every argument with Roch. I really hate it when he gets the better of me! That hasn't changed and I think that's a good thing. But I would never want him to feel I was impatient with him because now he is slower at so many things. I don't think I'm naturally patient, but it doesn't feel difficult to be patient with the limitations the monkey sets for him. I defy the monkey.

Why is it that the Licals trial tablets are so huge? I ask you, does it make sense that for a clinical trial for MND patients, the tablets are enormous, and difficult to swallow?

We had sirloin steak for dinner tonight - I was watching Roch to see if it was difficult for him to manage. He said no, no trouble swallowing (or cutting up the meat) but he did say that he's finding it more difficult to take the big tablets. I recently bought a pill crusher (ouch!) for the cat's worming tablet. I suggested we scald it and use it for the Licals tablets. "I am not a cat," he said indignantly. So much for that idea. Happily all the other tablets still go down ok. He does have to take quite a few. I'm relieved that swallowing them isn't causing a problem yet. We may need a pill crusher later.

So what does he take? Riluzole of course, quinine for the muscle cramps (still working at present dosage, occasional cramps experienced), ascorbic acid (concentrated Vitamin C), Vitamin E in suspension, Loperamide, lorazapam (for anxiety, but he hasn't taken it yet - originally prescribed for the night horrors - could this mean that he is actually taking lithium and it is keeping the horrors at bay?) We're told that for six months after his participation in the Lithium Trial ceases, he will actually be prescribed lithium. Well, that's fair. I wonder if it will make a difference to how he feels? I wonder if he's on lithium and it's slowing the monkey's progress? I wonder, I wonder.

He's not losing weight, although he does appear to me to be losing muscle mass. It's not very noticeable yet. Upper arms and legs are thinner. His ankles are delicate things.

So here I am, recording the changes I'm noticing on my blog and how am I feeling about it? Mostly I try not to think about what it all really means. My default position is sad. I am always sad. On the surface I can be anything you like - cheery, scratchy, snappy, businesslike, funny, calm, loving - but let me tell you I am always sad now. Do I ever forget about it? Sometimes in work when it's busy I am thinking about other things or if I am engrossed in a good book or a good film/drama I can be transported elsewhere for a time. Having said that, if I am very tired (I am often very tired) it is there even at work, like a moth constantly flapping around my face and I don't have the energy to wave it away. The flickering shadow makes me squint at the screen and my eyeballs ache.

Occasionally I am panic stricken at the thought of being without him. And I can't imagine a time when he will be unable to move or speak. There are times when I try to, you know, try it on for size? But I can't keep it up for long. I don't want to. I taste the loneliness and it's enough for me.

My mother is comforting. She says we never know what will happen. "You could die first," she tells me. "What would Roch do then?" I ask her. "Well, you wouldn't have to worry about it then, would you?" She says. A girl's best friend is her mum.

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