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.

Quicksand-y.

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.

Mad Sow, Mad Cow

Some of you blog readers may wonder why I refer to the blog as "Musings of a Mad Sow". No, I don't think of myself as an angry pig, though, honestly, if I gain any more weight...
No, it's all about Denny Crane on Boston Legal. Right before I was diagnosed, I got hooked on the show, particularly enjoying when Denny would say something completely irrational and then gesture to his head and say, "Mad Cow", as if that explained everything.
http://www.youtube.com/watch?v=Zz0H-Py2rjc&feature=related

One of the signs of MS in me was the loss of the barrier between my interior and exterior monologue. You know, that inner voice that says inside your head, "This guy is a jerk", while on the outside you smile sweetly and say all the right things.
I was in management, so my straight talking almost led to me being escorted off the property
It was quite agonizing, really. I'd realize that my mouth and brain had betrayed me and try to retrieve or patch things up, but often it was simply too late. So, since MS had the right initials, I decided to try to redirect my mouth by pointing to my head and saying "Mad Sow".
Oh how I wish it would work.
For the most part, now that I am less stressed and have slept adequately, my mouth is under better control, but it's not anywhere near perfect. I am much more intolerant of foolishness than I used to be formerly and need to remind myself that being part of any bureaucracy is NOT a good plan. And yet somehow I keep ending up being part of them.
And my mad sow keeps putting her little hooflet in.
Like many of us with invisible disease, my physical symptoms are small - except for numbness and an inability to walk further than a block or so. But the mental ones are glaring, at least to me.
I was "gently reared" as they say, and I cringe at being thought rude. My dad didn't raise me that way. But wherever those lesions nestle, they've liberated my tongue and tied up my Miss Manners. Maybe I need to follow that old African tale and dig a hole and yell my true feelings into it. Maybe then the sow would be appeased.

http://www.documentingreality.com/forum/f2/post-picture-angry-pig-72235/index3.html

Somehow I doubt it.

Being positive and all that crap

Well, it's sunny.  I am wearing my favourite turquoise shirt. I can still see well out of my left eye. I'm almost done a huge project. I managed to make goodies for church. People seemed to like them.

I did bring the goodies half an hour late, though, having forgotten the time of church. Because I've only been about 10 times already. Last week, though, I had a meeting a half hour later, so that information supplanted what I had had in my brain.

I got the results of my neuropsych assessment the other day. The results weren't that surprising, but the "instructions to employers" made me want to sit down and cry. Apparently I am so distractible I need small chunks of information as a time. I need people to look me in the eye to ensure I am paying attention. I can't be expected to do boring jobs. If I have a project, I should plan to do it in 10 minute segments, alternating with other jobs and breaks, so that I can maintain focus.

Well, heck, I've been doing that for ages, just not deliberately.  I start something, get distracted, start something else, realize I've forgotten to finish the other thing, and so forth.  I frantically try to order my environment, but I get distracted and put down a paper here, my glasses there. Then I can't see, so I go looking for my glasses.  And after I find them I have no idea where the paper is. Maybe the dog ate it. At least I think I have a dog. He's here somewhere.

Some days, as they say, it isn't worth chewing through the restraints.

Today, walking without my cane and experiencing total fallabout by the time I'd got halfway around the route, I wished for restraints.  And a comfy bed.
Today, as I hustled into church late, I wished for restraints, or a calendar that beeped at me more regularly. I need to put alarms on EVERYTHING and that is annoying.  Especially as I forget to enter stuff into my calendar or add the alarm.
And then there are those moments of "inappropriate sharing", when I wish my mouth had a bit of a restraint. But that would require the memory to remember what effect my talking had had before, plus the ability to read others, which I seem to be losing.
Aw heck.  Better go out the dinner on, and then sit right by the oven, so I don't set fire to it. It's just SUCH a good mental day.
And we won't get into the pain. I wish I could forget THAT.
Oh Goethe, you rock.

Traveling through the Phantom Tollbooth

Or, trapped by the Terrible Trivium, a monster that gives you endless pointless tasks to perform...
Today was a wasted day, and for some reason a wasted day seems MORE wasteful in the big city than it did in my little town. There's a whole world of fun things to do out there, and I didn't do a single one of them - just sat on my balcony, feeling the breeze, read "The Phantom Tollbooth" by Norman Juster (a fabulous book about words and language, filled with puns and more). I have a dozen writing contests to prepare entries for, and lots to do, plus the wonderful potential for exploring the city.
But the heat defeats me. It's 30+ degrees Celsius (90F) out, plus humidity. It's insane. Even the thought of it fatigues me, and I'm unwilling to get all sweaty and potentially induce brain swelling right now. I'm still dragging my body about recovering from the move, which all seems unreal to me.
One thing I should learn is that making decisions in times of brain fuzziness is not wise. I keep doing it, and live to regret it. But what seems like a good idea when I see myself in a hole and need to dig myself out of it is too tempting. I keep jumping to the Island of Conclusions, as Milo did in Tollbooth. And once you jump onto the island, it's hard to get off again. Let's just talk cell phone contracts, for one thing...
The cognitive changes in MS are one of the hardest things to cope with and understand. As a new friend told me last night, if you are irrational, would you be able to judge yourself as irrational? Do the mad know they are mad?
When life gets foggy like this, I know I need to go to ground and pull the covers over until I can see clearly again. It's hard to make others understand my sudden absence from things. But if I don't pull back, I know the mistakes I make will grow -and they may get past where I can easily correct them.
So, it's time for me to struggle off that island of conclusions and try and do things sensibly. Maybe a cooling drink would help....