June 1, 2014

Multiple holes in my head: Fampyra diaries and how do you know if you are crazy?

Do you remember that old elementary school question about "How many holes do you have in your head?" where you had to remember all the openings through which a bean may or may not be pushed?

Well, sometimes, I feel like there are others, deep vacant spaces with echoes. No beans growing there, but a certain lack of certainty, as it were.


I find the cognitive changes in MS the worst, because HOW DO YOU KNOW IF YOU ARE HAVING THEM????

At least when my legs don't work, I can see that, clearly. From the floor, maybe.

I think of the happy demented patient who doesn't know what he or she doesn't know, and then I wonder...hmm. Am I really confused or am I still mentally sharp? Do I just THINK I am mentally sharp when really I am barely able to mouth breathe?

Or, more alarmingly, am I mentally ill or just getting fed up?
It's almost impossible, mes amis, to tell the difference.

See, I'm generally pleasant. I smile at strangers (which leads to some odd situations) and I am kind to waiters and coffee servers and such. I try to be happy and cheerful and useful and sweet.

But every once and awhile I get angry, or fed up, or annoyed. Like most people. Rather less than most people. And when I let that demon out of the bottle, it seems everyone has to take me to task for it. I don't throw things, I don't hurt people. I get angry, at being misled, or not told the truth. I say things, like "This is where I draw the line". Because, y'know, it takes a lot of effort to figure out the truth when your mind is as foggy as mine. So when someone is deliberately misleading, well, I lose my temper. It's true.

And then all it takes is someone to tell me, "I never said that," and I slip into panic land. Maybe they didn't say it. Maybe I just misread it. Maybe I'm losing it. Maybe I need to plan for regular assessments, a nurse in the home to keep me away from sharp things, etc.

So, I took myself back to school, at my advanced years of 55+. I took myself to a creative writing school, a fairly demanding one. My brain gets seriously tired at the end of a writing day. I often can't even speak any more. Fortunately my cat doesn't expect too much in the way of conversation.

And I restarted Fampyra, trading my financial stability for this last kick at the writing can. It DOES make me sharper. I CAN concentrate better. I can walk better, too, managing a 5 km walk and a 3 km MS walk 2 weeks later.

Unfortunately, it makes me react quicker, too. It's like the Fampyra is lighting up my hippocampus, my limbic system, my amygdala, by blocking those potassium channels.

So I lose my temper quicker, too.
Or maybe some things just are annoying?

I just don't know.