Long rant ahead - watch your heads.
Oct. 4th, 2003 11:51 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
akeyoftimeI melted down again! Weee!
And I don't care that my grammar is atrocious.
It wasn't as bad as my last meltdown, a rather massive thing I had back in... April? May? There should be a journal entry in here somewhere that's got a date on it.
Either way, it wasn't as bad, but bad enough. I was at ensemble (choir and band fused... woah), when I noted my Fibro was acting up. I soon realized it was the beginning of a flare. Everybody swear with me now - flares are very, very bad.
Basically, you all know (well, maybe not, but meh, if you read here, you know), how I tend to be in pain a lot, and how I'm always tired, and how a hurt more easily, well, a flare is when all of this gets amplified by rather large number, and about all I want to do is crawl into a corner, curl up and beg for it to end.
This time however, I realized what it was early on, so jumping out of my seat I went for a walk/run around campus for a little while, and though I was still flaring when I got back to ensemble, I keep moving and squirming, and even though my attention span was terrible, I stuck with it. Thing with flares, is that pain is very distracting and tiring.
But see, a flare in itself, especially one like this, where I cut the worst off, is that its really tiring. Pain wears down at you like nobody's business, and as a result, I had to go home as soon as ensemble was done: I was too tired and weak to go out with my friends like I was supposed to.
I was, needless to say, a little livid. I know I'm doing a lot, and have more of a social life than I have any right to, but I want to do more. And I know I do a lot for a fibro patient, but its really frustrating when everyone around you is normal.
See, that was also a sticking point. I have no one at school who really gets it. Sure, some of them have had anemia, so they understand the crushing fatigue, and everyone's had a bad head cold that left them achy, but most of them (if not all) don't really understand what fibro is. I ran into two of my friends in the caf and quite litterally had to explain what this was - I had to explain while my body felt about ready to tear apart. Even remembering it is giving me pain. I don't enjoy that.
So basically, what I really needed at that moment was someone who got it: sympathy doesn't go wrong, but its temporary, and when you get down to it, hollow. You can see in their eyes and their faces that they don't understand, and that they're a little bewildered, and possibly even a little scared by the fact that you can go from normal to something entirely not in a matter of minutes, and they just don't understand. I have no support system at school. If I have another flare when I'm there, there won't be anyone to help me through it. Even Jenn B, whom I've known since before I ever had a stroke and got fibromyalgia doesn't get it. She's better at all of this comforting stuff, but she doesn't really get it. Granted, I'm being a bit hard on people: Marilyn, my parents and maybe Pris and Jenn S(maybe - no offense to them is meant, but they've only known me for a year with this disorder, as I don't count the first year based on the fact that I pretty much lived in bed) are the only ones without fibro that seem to understand, to whom I can say "I'm having a flare up." and they know what it means. They know that FM is short for fibromyalgia, and even if they can't spell the name of the condition, they know that I have it, what it entails, and what it means in my life.
Excuse the run on sentences please. This is very much a rant, so if you have to struggle to understand what I'm writting, I'm not sorry a frecking bit.
As I was saying: I need to find some sort of support at Glendon. Even on the York Main campus - someone I can call or talk to face to face who at least has an inkling of what this pain is like and how disruptive it is. I don't want to have to call home everytime I have a flare, and my friends have lives of their own - the last two I listed don't even live in the city. (Yes, Alex - Jenn S is your sister, and I might regret making the distinction later, but to frell with it right now.)
So yes. I've ranted, I've raged, but I know what I need.
And I found a decent way to cope with it, until the weather gets bitter cold.
Walking will be my saving grace.
I went up on campus yesterday to pick some stuff up, and had planned to spend an hour or two there until I went to meet my friends for our weekly role play session. Here's the list of stupid things Katie did yesterday.
1) Forgot her homework at home.
2) Forgot her gym clothes at home.
3) Stayed up too late the night before, however unitentionally.
4) Left her agenda, and therefore most of her friends phone numbers at home.
I was in a really foul mood by four o'clock, as you can well imagine.
So I started walking. I had no particular reason to hang around on campus: I could have read the play for drama, but I'd tried that and I wasn't in any mood to work.
So I walked. And walked. And walked. A hour and something minutes later, I'd covered most of the trip home. Now, if you know where I go to school, and where I live, you'll have a pretty good idea that that was a very long walk. I can give exact distances later, but I don't feel like posting street names here for the world to see, because I'll be damned if I'm locking this journal entry up.
That walk melted away the bad mood very slowly but surely, and with Gordon (Barenaked Ladies) in my CD player, which is great walking music btw, I went from ready to tear someone's head off, possibly my own, to something much happier, if still not a littlte annoyed.
By six I was at Misha's house and the five of us were getting ready to role play, and the fact that I managed to sit more or less in place for five hours without another flare up or excessive pain tesitifies to the miracle of long walks.
In the meantime, I've written quite enough, I feel better, and if you've actually read this monster, you deserve a massive cookie. Huge hugs to Marilyn and Pris for actually being online Thursday night when I needed them to be.
And I don't care that my grammar is atrocious.
It wasn't as bad as my last meltdown, a rather massive thing I had back in... April? May? There should be a journal entry in here somewhere that's got a date on it.
Either way, it wasn't as bad, but bad enough. I was at ensemble (choir and band fused... woah), when I noted my Fibro was acting up. I soon realized it was the beginning of a flare. Everybody swear with me now - flares are very, very bad.
Basically, you all know (well, maybe not, but meh, if you read here, you know), how I tend to be in pain a lot, and how I'm always tired, and how a hurt more easily, well, a flare is when all of this gets amplified by rather large number, and about all I want to do is crawl into a corner, curl up and beg for it to end.
This time however, I realized what it was early on, so jumping out of my seat I went for a walk/run around campus for a little while, and though I was still flaring when I got back to ensemble, I keep moving and squirming, and even though my attention span was terrible, I stuck with it. Thing with flares, is that pain is very distracting and tiring.
But see, a flare in itself, especially one like this, where I cut the worst off, is that its really tiring. Pain wears down at you like nobody's business, and as a result, I had to go home as soon as ensemble was done: I was too tired and weak to go out with my friends like I was supposed to.
I was, needless to say, a little livid. I know I'm doing a lot, and have more of a social life than I have any right to, but I want to do more. And I know I do a lot for a fibro patient, but its really frustrating when everyone around you is normal.
See, that was also a sticking point. I have no one at school who really gets it. Sure, some of them have had anemia, so they understand the crushing fatigue, and everyone's had a bad head cold that left them achy, but most of them (if not all) don't really understand what fibro is. I ran into two of my friends in the caf and quite litterally had to explain what this was - I had to explain while my body felt about ready to tear apart. Even remembering it is giving me pain. I don't enjoy that.
So basically, what I really needed at that moment was someone who got it: sympathy doesn't go wrong, but its temporary, and when you get down to it, hollow. You can see in their eyes and their faces that they don't understand, and that they're a little bewildered, and possibly even a little scared by the fact that you can go from normal to something entirely not in a matter of minutes, and they just don't understand. I have no support system at school. If I have another flare when I'm there, there won't be anyone to help me through it. Even Jenn B, whom I've known since before I ever had a stroke and got fibromyalgia doesn't get it. She's better at all of this comforting stuff, but she doesn't really get it. Granted, I'm being a bit hard on people: Marilyn, my parents and maybe Pris and Jenn S(maybe - no offense to them is meant, but they've only known me for a year with this disorder, as I don't count the first year based on the fact that I pretty much lived in bed) are the only ones without fibro that seem to understand, to whom I can say "I'm having a flare up." and they know what it means. They know that FM is short for fibromyalgia, and even if they can't spell the name of the condition, they know that I have it, what it entails, and what it means in my life.
Excuse the run on sentences please. This is very much a rant, so if you have to struggle to understand what I'm writting, I'm not sorry a frecking bit.
As I was saying: I need to find some sort of support at Glendon. Even on the York Main campus - someone I can call or talk to face to face who at least has an inkling of what this pain is like and how disruptive it is. I don't want to have to call home everytime I have a flare, and my friends have lives of their own - the last two I listed don't even live in the city. (Yes, Alex - Jenn S is your sister, and I might regret making the distinction later, but to frell with it right now.)
So yes. I've ranted, I've raged, but I know what I need.
And I found a decent way to cope with it, until the weather gets bitter cold.
Walking will be my saving grace.
I went up on campus yesterday to pick some stuff up, and had planned to spend an hour or two there until I went to meet my friends for our weekly role play session. Here's the list of stupid things Katie did yesterday.
1) Forgot her homework at home.
2) Forgot her gym clothes at home.
3) Stayed up too late the night before, however unitentionally.
4) Left her agenda, and therefore most of her friends phone numbers at home.
I was in a really foul mood by four o'clock, as you can well imagine.
So I started walking. I had no particular reason to hang around on campus: I could have read the play for drama, but I'd tried that and I wasn't in any mood to work.
So I walked. And walked. And walked. A hour and something minutes later, I'd covered most of the trip home. Now, if you know where I go to school, and where I live, you'll have a pretty good idea that that was a very long walk. I can give exact distances later, but I don't feel like posting street names here for the world to see, because I'll be damned if I'm locking this journal entry up.
That walk melted away the bad mood very slowly but surely, and with Gordon (Barenaked Ladies) in my CD player, which is great walking music btw, I went from ready to tear someone's head off, possibly my own, to something much happier, if still not a littlte annoyed.
By six I was at Misha's house and the five of us were getting ready to role play, and the fact that I managed to sit more or less in place for five hours without another flare up or excessive pain tesitifies to the miracle of long walks.
In the meantime, I've written quite enough, I feel better, and if you've actually read this monster, you deserve a massive cookie. Huge hugs to Marilyn and Pris for actually being online Thursday night when I needed them to be.
