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.
3 Comments:
I have to be honest Doug, I feel a little let down. You say that friends and loved ones didn't seem to help much and that their posts and messages were lacking and it's "no wonder [you]'ve never felt complete." Well, I consider you a friend and I hope the feeling is mutual, but the feeling of incompleteness comes from you, not your friends. No one can make you feel inferior without your consent, and the same goes with self-actualization. Just because a friend doesn't have an answer to a malady, doesn't mean they don't care.
And if I've misinterpreted your post, I whole-heartedly apologise. Maybe we can talk about it at rehearsal tonite or something. God knows there'll probably be enough time during Ken's loooooooooong talks. :)
Cheers.
J.
I'd say you've misinterpreted the post completely. I'm not blamming anyone for not understanding. Shauna got it right.
I wouldn't dwell on things like that in my posts, they aren't directed at you. But it does concern me that you think it is. You're a nice person and great to talk to. But try to understand that I have huge porblems in my life that have nothing to do with you.
As far as friends go, I think that there are big distinctions between an acquaintance and a friend. I don't ask acquaintance to stand next to me in the hospital beds, to rub my sore legs, to read my poetry. And I've never asked anyone, friend or otherwise, to "answer a malady." They don't call my house to see how I'm feeling, talk to my family, see how things are. Not that friends always stay friends and acquaintances always stay acquaintances, they constantly move from one to the other. And I always value them, everyone of them.
So, what my post is about: overcoming dispare. I don't know how you even thought what you thought about it. I hope everything is ok with you because you can be secure in that I'm not blaming you for anything, believe me. There are a lot of things happining that can allow for no blame, so why would I even do that? I'd be lying if I said your post didn't put me in a tough position. Lately there has been an influx of dealing with people trying to deal with my health when they know too little about it. And it is very frustrating when people don't get it.
Sorry if the post wasn't clear or specific in certain areas. See you tonight. Take it easy.
I have just read this post for the first time. I came across your blog today, while finally attaching MS as an "interest" to my own blog here on blogger.
This post brought me to tears. Tears because I recognize it. I experience dizziness too. I have said that I could take anything that this disease throws at me, but NOT the dizziness - it is the most dibilitating thing.
I also recognize my situation in "using" your illness/disability for the first time. It is extremely difficult to "admit" needing a change in your daily routine, and in your life as you had been acustomed to it.
I feel that way when I have to NOT do something that I would usually do because I am tired, or dizzy.
Thank you for blogging here - I'm glad I found it.
Post a Comment
<< Home