Tuesday, February 28, 2006


Headache, like migrane for the past 2 weeks or more...
Sinus trouble for the same length of time.
Really bad dizzy spells today. To the point where walking was difficult.
This still feels like a really bad dream that I'm dying to wake up from.
Physical health is really poor. I just got in from a short walk, not even a fraction of my old jogging route, it was a struggle the whole way.
I don't want to comment because it would be too lengthy and full of useless emotional garbage due to frustration and cronic mental suffering caused by continued physical ailments. Just laying down the symptoms for reference later.
Taking larger amounts of painkillers and sleepaids (lorazapram) to help and achieve the normal effect. Not going so well. I remember when taking rebif didn't hurt me so much. I long for those days. Even the prednisone wasn't so bad compared to this. Where is the quality of life I was promised???
Is this possible side effects from drugs? Unsure at this time...

I feel like Job, I asked god to end it or take me, he's not listening. haha... that was a stupid reference. Nevermind.

Friday, February 24, 2006

The Inward Journey Begins

So here's the issue:

2 years ago, I was up early every morning, running 3-5 miles before breakfast. I was training for marathon runs. A year after, I was training in the Dojo. I wanted to do some fighting. In university I was in the top of all my classes, somewhere between 1st and 5th, always in the top 5. My life goals, my persuits, my hobbies, indeed my life in general followed one steadfast principle: Push the limits, raise the bar, work hard or amount to nothing. Be more than average, fight for a top spot.

First let's follow that logic through. If I got there what next? 1st place or nothing else... If I got there where form there? You can't maintain that forever. Ok. Logic busted.

Second. Look at the hand that was delt me. Now I get up every morning, the first thing I do is check to see how much better I've gotten. How much is the disease going to slow me down for today. You see my old life-style logic of pushing the limits is now dangerous to me. I have to set more reasonable goals and not push the limits. And those goals have to change from day to day. And when I don't accomplish my list of things to do, I can't beat myself over the head with it. That's the big hurdle. I want my mind to allow for these lapses in ability, in accomplishment. I was hard on myself before even for someone with out a disease that responds to stress. Now I'm really fucked. This disease doens't get better, it only gets worse, in the slow progressional sense. All I can do is delay it for a while and I'm not so good at that either.

Twice now I've seen what happens when I push the limits. The problem is this: I don't know where those limits are. I don't know how much I can do reasonably and survive.

I was an athlete, I was an academic, I was I was I was... I can't drive the thought out of my head that everything is changed. I'm still all of those things but now I'm also an MS patient. That changes everything. I could still fight, but only when I am able. I can still work, but only when I am able. And I can never train my body or my mind like I used to. Time to take a back seat. The prime of my physical life has passed dramatically and that is really getting me down. Most people do that gracefully, mine fell with a crash... loss of eye sight, loss of balance, loss of vision, loss of muscle... finally... loss of fitness.

I used to run 5 miles before school. Now, I'm winded running up the stairs. I used to do the splits, now I can't bend over 90 degrees with my toes pointed. I'm putting on too much weight, non of my clothes fit. I have no energy to sustain even a boring day. What am I?

I need to set a reasonable goal of who I am. That starts with a vision. The problem is, the vision I have of myself, the future me, the past me, the me I want to be, they are all the same person. Opposed by the me I am now. And what's worse is I know the me now can't sustain himself. Not for long at least. Everything is slippery and I'm losing my gripo on a lot of it.

I'm at a major life crisis and everything has to change. Now! I refuse to go any farther down that road I'm on. But the problem is, when I get a pain in my back like I have right now, do I ly down or go for a walk? You see, I don't know how to deal with this disease yet. It's going to take a lot longer than I thought. What a brave face I put on. A really brave face. Folks, I'm terrified, I'm hurt, I'm lonely, I'm gone. I'm not here half the time becuase it's too scary being here. What this disease does to ME on a daily basis is almost too much to handle. I wish I was some other MS patient. You know, the one that does everything like it doesn't bother them. They have mild symptoms and full recoveries. But... that isn't me.

I'm going to get through Lughnasa then re-evaluate what my mission is. It's obvoius this task will be relentless but it has to be done. What's left is only death. And I'm not laying down stakes like that for anybody. So now, I think it's time for a nap. I'll continue this another time.

Sunday, February 12, 2006


Well didn't take long for my train of health to fall off the track. I did it. It's my fault.

And now I will disappear until I'm healthy again and I can actually write again. Goodbye for now. And good luck to me for getting healthy.

:S Here goes nothing...

Thursday, February 09, 2006

My personal advice..

if you want to stay healthy, don't get a disease that involves tons of waiting. Becuase nothing in your real life will ever get done.

That's basically the story today. Why don't you suffer for a few more days and then we'll see what we can do? oh really? Really asshole?

This is really frustrating. They said it was a treatable disease. They said it I could live a normal life with it. I've been fucking lied to.

It has been become increasingly clear that medical doctors, with emphasis on specialists, are overpaid, stuff-shirted, nobody's. Why? Because it is also strikingly clear that they don't know what to do with me. They ignore my phonecalls, ignore my plea's for help when I do see them, telling me to wait until monday, wait until friday... If I have one more doctor tell me to wait ...

This disease, me, is not being managed. I'm beign shuffled around. And no one knows what to do for me. Meanwhile, I have no idea how I'm going to finish school, or go on stage like this...

*curling up in a ball and crying desperatly and hopelessly without help today*

I'm starting to resent healthy people. They have it easy. It's not fair. I want a normal shot at life.

Tuesday, February 07, 2006

Is this good or bad?

It all started last Friday before I went out to visit some friends. I began to feel a little dizzy. I hadn't slept so well in a long time so it was just fatigue, right? It'll be better after I shake it off in the morning. Still dizzy. But not that kind of spinny dizzy that you think of as dizzy. Imagine that you are in an elevator as it begins to go down. That feeling of falling through the floor. Now Imagine that while lying down, sitting in your favorite chair, driving the car, walking to class... all common everyday occurences for me since Friday. Nothing getting better, but at least not getting worse.

Last time this happened it was almost unbarable. I was in bed for two weeks. And no one would believe me that there was something wrong. I was on every imaginable anti-biotics you can think of. Friends and loved ones didn't seem to help much. Just take your pills and stop complaining. I've went back over their posts and messages and what I wrote in my journals. I was alone. No wonder I've never felt complete.

After my diagnosis I imagine a few of these said people began to feel bad about how they handled it and were nice to me for a little while. I guess all you can really expect is that parents are the only ones to carry you through. Everyone else just says they are sorry, don't worry things will get better, it won't always be like this. But even the action of well intention parents feels like mindless dribble that people spew when you talk to someone who really does understand. Not just false empathy, but really knows what you are going through. Doctors look dumb and useless in their presance.

I don't know if this is making sense or spelled right, but you'll have to forgive that, I'm currently experiencing a relapse in my disease and working is difficult, so typing is not a major priority next to my health right now.

Anyway, the point of my story, what I can't figure out what is good or bad, is my state of mind today. For example, today is the first day since my diagnosis that I feel like I have a disease. Why? Becuase I'm taking advantage of services provided for the disabled. For the first time in my life I feel like I'm taking the easy way out. And it kills me. I don't know where this nagging feeling like I have to do everything myself, in my own way comes from, but letting anyone else into my world in the form of help is threatening to me. As I told mom today, under Bushido code, my life is now forfiet and the honorable thing to do in Samauri terms is to end my life. Good thing I'm Canadian, hey?

Here's what is going on with Mel Clark:
He's getting me a lap top with a really neat program. I gave him text books that I have to read and they are now cutting them up, scanning them, and the computer will read them to me! They only shitty thing is my books are going to be ruined. :( Those who know me know that is a terrible thing to do to a book. I'm getting them back with no binding. Poop. :(
He's also going to take care of my loans issues. Thanks be to Yeats. haha
And he is recomending that I do my exams through the disability office which will give me certain benifits when it comes to exam time.

Now all this might be good for me. But I can't help feeling like that's it. That's the end of my normal life. I know it's only for a short time. But I am very accostomed to doing this stuff on my own, like reading books for example. The simplest thing, done for me. I feel like... like... like an MS patient. And up until now, I know it was possible that I'd have to go through somthing like this, but it is much much harder than I anticipated. Than anyone would expect. I don't know how to go through this.

The worst of it this: I can handle anything this disease can dish out: blindness, paralysis, depression, fatigue... whatever... I just can't take dizzy spells, it's the most debilitating thing you can imagine. And it makes me insane. With the other disablilites, I can still do things... with this... I can do next to nothing except sleep, and that isn't so good either I might add. This is a very tough time for me. Not to mention that I look fine and normal on the surface which is really confusing when you are trying to tell people you are sick. It's hard to describe, it really is.

This is my nightmare. This is my life. And as low as that sounds, I can start living with it. I went back to school way too soon after diagnosis. And NOW, and only now, am I discovering what it means to have MS. They say it's livable. It is. But I don't know what kind of life that is yet. I know this: it's not what I was before. No where near it.

Plunged into a nightmare and I can't wake up.