June 30, 2011

Whoopi Goldberg and I

I've gotten sortof used to having my legs not work particularly well by the end of the day. I expect that. But I absolutely HATE those days when the muscle controlling my bladder exit decides to do its job in a sloppy way.
It's warm. I don't like the three underpant days when it is warm. Or anytime, actually. I spend my time gazing at washrooms and wishing I was a man with a longer tube. I don't feel the urge to pee, until it is too late. I don't seem to be able to empty fully without abdominal support. And I hate hate hate the thought of wearing a pad that will hold the pee like a baby's diaper. I dread the smell oozing out around the edges.

There are so many indignities with this illness. I'm okay with a lot of the things that bother others - using a cane, staggering, forgetting things, getting lost, storing the milk in the oven, losing my balance. But there are a couple of things that mess with my head.

Losing my vision terrifies me. And incontinence is just unspeakably awful.

I am supposed to drink much fluid to avoid growing more kidney stones. How? I'm supposed to be (and like to be) a sexual being - how? I want to be pretty - how, with the miasma of stale pee surrounding me?

On the good side, my dog finds me intensely interesting, and picks up any undies I discard momentarily onto the floor. I'm thinking of training him to take them to the washing machine.

Which he likes anyway, since recently, it smells a lot of pee.

I can only hope this, too, passes. Pun intended.

June 25, 2011

Zoom Zoom!

Every once and awhile I wonder about how long I will be allowed to drive. I'm distractible, yes, but it's the leg twitching and such that really could make it impossible. Then I run across this article: http://www.sciencedaily.com/releases/2011/06/110617080818.htm
Check it out....

June 19, 2011

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.

June 13, 2011

Driving just isn't the thrill it used to be - or maybe it's a thrill in a different way, rather

When my dad was dying of cancer, he was pretty drugged up. I remember looking at the bottles of opiates and pain killers of a variety of sorts piled on the kitchen table, and seeing him choke down handfuls of them to keep away the endless pain he suffered.  Then he'd get into his car and drive. It was terrifying but in reality, he still drove pretty well. I'm certain he was impaired, but he'd driven in the area for so many years that it was almost automatic.  The big risk was from unexpected events. I sat very quiet when he drove and tried not to be distracting...but he just didn't want to give it up.  For him it was freedom, life, a sign he still was who he had been.
 My MS is starting to affect my driving.  Part of it is the lack of familiarity of the roads around here, some of it is a leftover from an optic neuritis bout, some of it is my distractability, and I'll bet the GPS lady isn't really helping, either. I need to get a more global view of Halifax/Dartmouth rather than the tiny view in the GPS window. But it's a bit scary. And I hate the thought of losing an ability to drive.  Like my dad, it's part of my identity. I drive well, overall. I like being able to just take off if I want to. I like the idea of the convenience, the help for me and my difficulty walking, the sweetness of not having to carry piles of groceries from pillar to post.
But my life is getting limited. Tonight, for example, I was supposed to go out - but it is raining, and I know the roads will be covered with shine and glare when dark, and I can't handle all that visual input and drive at the same time.  It is totally overwhelming. And dangerous. So I'm staying in.
At least til I get my new glasses. And the ON calms down. Then we'll see. As it were.  Because I don't want to give it up.  Not yet.