I've said it before, and I'll say it again: It is a bizarre experience, having this disease.

A few weeks back I had the very-much-unfun experience of finally breaking down and going to see the neurologist about a few things. Those few things were namely: bladder control problems I've been having for a long time but couldn't admit even to myself, much less to a doctor; problems with randomly recurring blurry vision (that might be caused, it occurred to me after reading the warning label, by my anti-fatigue meds) which seemed to be increasing in both intensity and duration; increased fatigue; and various and sundry tremors and muscle spacticity.

It is a strange thing, for lack of better description skills, to have a disease that you know causes things you might have before simply shrugged off or just sort of offhandedly wondered about with no real direction. Blurry vision? Maybe I just need to do some eye exercises or get more rest or keratin or something. Bladder problems? They must be my imagination. I'm 30 years old, for Christ's sake! Tremors? Fatigue? I must just not be getting enough rest. Better cut out those late-night phone calls or something...or just suck it up and deal.

But now they have a cause. Well, a possible cause. Now they are indicators of the possible growth of new lesions on my brain. Now the fatigue could just be that I'm tired, or it could be a sign that, despite the serious life changes I've been making, I need to slow it down even further. The spacticity might not just be my "sleeping wrong", and it could never go away, regardless of how long or in what position I sleep.

Or, they could just be signs that I'm a big wimp and am just a little sleepy.

I waited. For a quite a while, actually, until the symptoms got worse. I stood by and monitored them, made note of them, tried not to be distracted by them. Tried to just reassure myself that before last Thanksgiving all these things would never have caused such silly worrying.

And finally, when I could deny them no longer, I went to see the brain doc. She asked a bunch of questions, nodded and prodded at my answers where necessary, conducted a few tests for neuropathy and whatever else...

And then she told me to do Kagle exercises and cut back on the coffee, go see an optometrist, and get some rest.

This is when the disease gets really fucked up. I should have been relieved. Phew! No ordering up of MRIs or giving of new meds or delivering of bad news that it had progressed to new levels. This is good, que non?

So why was I crying on my drive home? Because, here's the kicker: I waited. I waited until I thought the symptoms were too obvious to ignore anymore. I waited until I thought it was all too abnormal not to be something serious. I waited until I just couldn't stand it anymore.

And what I couldn't stand was, technically, nothing. I'm a big pussy, is what I am. A pussy with a bladder problem. But that's not the biggest issue.

The biggest issue is this: If those symptoms weren't indicative of disease progression or even presence, then what's it going to feel like when it's really something serious? The idea that those symptoms weren't enough to so much as raise my neurologist's eyebrows (or, if they did, she should move to Vegas because she's got a GREAT fucking poker face) really, really freaks me out. Because that means she's seen WAY worse. And that way worse is where I'm going to be. And the stuff that I've been experiencing? Even though it's totally out of the ordinary for my body to behave this way, the shit I've got is evidently NOTHING compared to where it could (and, likely, will) be.

And that, dear diary, scares the living daylights out of me.

So, here I am today, with aching limbs and jumpy muscles. My right quad continues to jump up and down as though some phantom inside my head is telling me to do jumping jacks but the only part of me that can hear its voice is my right upper leg. My lower right leg feels as though it has siglehandedly just gained about 200 pounds overnight. They call this "dead leg" or "lead limb" on the MS sites. My inner thermostat is all whacked out, so I get cold for no apparent reason all suddenly, and then hot in similar fashion and reason. I am ridiculously tired, but have gotten plenty of sleep in the last few days. But the fatigue is in my bones now, it seems. As though nothing but a marrow transplant will flush it from my system. And then this morning, at workout, the vertigo began creeping back as I was sitting watching the pool ripple in the wind.

But is it enough? Likely not. If I called someone, they'd likely tell me to take a few Advil, maybe a vertigo pill if I think it REALLY warrants medication, and grab a few extra z's before work again tonight. I'm afraid to call anyone for that very reason. It's not enough. But then, when IS enough? When do I get to the point that's just before the time when I go to the doc and she asks in that horribly reproachful tone, "Why didn't you come see me before???? I could have stopped this from happening if you'd come in when it started!"

And so, as I down my Advil and Meclizine with a green tea and multi-vitamin cocktail, I'll just suck it up, swallow the pills, and crawl into bed with one annoyingly recurring thought: It's really fucking weird, having this disease.

Posted by twids at 9:39 am