June 1, 2014
Multiple holes in my head: Fampyra diaries and how do you know if you are crazy?
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.