Why aren't you asleep?
I can't.
You haven't slept in days.
Thanks for reminding me.
You took your sleeping medications. What's going on?
Life.
I haven't been able to sleep well at all lately. I guess I never really have been able to, but the last two weeks have been a little worse than usual. I'm not sure what the main reason is. I think it's just a mixture of things; pain, sickness, exhaustion, anxiety, worry, etc. I'm at that point where I'm just too tired to actually fall asleep. My body is just breaking down. I usually get to a point where my sleeping meds kick in and I can almost fall asleep but then I slightly move or try and get comfortable which then sends searing pain through my body, as it usually does whenever I move due to my autoimmune disease. Which then, of course, completely wakes me up. It also doesn't help that my kitty, the love of my life, got very sick a couple weeks ago. She's now not allowed to go outside until we get the new x-rays done. Now she tends to go insane because she's just itching to go outside so bad. However, that then drives me insane because she's tearing up my apartment and night trying to get outside any way she can. I've also just had a lot on my mind. I'm moving across the Pacific in a few months and that's really starting to weigh on me. I don't do well with change whether it be good or bad, so that's just been really stressful thinking about it. I just moved here less than a year ago and have made some really good friends and have basically become a part of my best friend's family and now I'm going to leave them. I just have to put my faith in God and trust that this is what's best for me. I know He has a plan. I just need to wait and see what it is. Anyways, I'm hoping tonight will be a little better. I think I'm going to work on some graphics for a bit and then try again to get to sleep. Wish me luck. Good night.
Tuesday, May 3, 2011
Monday, May 2, 2011
Limits
Why are you being lazy? Why are you still in bed?
I have no more spoons left.
That's no excuse. You're 19. You can do anything.
You try living normal when you have constant chronic pain all over, when your bones are literally disintegrating, when your muscles are in a constant spasm, when your nerves are mangled, when you get no sleep and even when you do your body doesn't interpret it as sleep so you're always exhausted. You try it! You try having to lipread ALL day long, especially when you're legally blind so seeing just the world hurts your eyes, let alone lip reading. Again, you try it!
Today is just one of those days. I have my good days, normal days, and bad days. Today is in between normal and bad. I had a couple good days this week. I used them unwisely. My best friend has given me a week of missed childhood experiences and it was absolutely amazing. The problem was, I've been having so much fun that I ended up using all the spoons from those days, the days before, and the days ahead. I forgot to pace myself. I didn't think to tell him that I needed to just breathe for a minute, take a break, and just start again the next day. I think that's been the hardest part through all of this; pacing myself. That and losing the life I had before. It's rare that I have fun days, or days where I feel somewhat okay. So when I do have them, I usually go all out. However, that usually lands me in bed for the next week. I also used to have a very active lifestyle. I was a gymnast, I broke horses, I skateboarded, went to the snow, rock climbed, I rode dirt bikes, quads, and dune buggies. I did so much and I'm so grateful that I even had the chance to do any of that at all. The thing is though, it's hard now. I know what I'm missing and it makes me go that much more crazy when I go out and see other people doing things like that when I know I just can't. One thing my best friend and I do together is going to the park to kick a ball around. Of course it's a beach ball because I would break bones or tear ligaments on a soccer ball or something like it. Hell, I ruptured my quad tendon and tore my quad muscle a few weeks ago just by kicking the beach ball. I know kicking a ball back and forth with someone doesn't seem like much fun for anyone over the age of four but for me it's so freeing. It's the only type of exercise or 'sport' I get to experience anymore. We usually kick it around for however long I'm able to stand up out of my wheelchair. It does put me in bed for a few days afterwards whenever we go out and play but it means so much to me. It helps me feel somewhat normal, even if I have to go back home to hook myself up to machines, hooking up my PICC line, putting on my oxygen tank, taking handfuls of medications, and going to bed for a few days. When we are playing, it takes everything in me to not run. I know I physically can't run but I think if I pushed myself I may be able to. The problem is, if I did, I would hurt myself. I would break bones, tear tendons, and much more all because my body just can't handle the force and movement of running. I see him running for the ball when I kick it way off somewhere else and I want to do the same but I can't. I feel so lucky I'm able to do that at all though. I know I won't be able to for much longer. I'm starting to have to use my wheelchair more and more as time goes by. For now, I'm just going to enjoy the good days I do have, even if I do push myself too much.
I have no more spoons left.
That's no excuse. You're 19. You can do anything.
You try living normal when you have constant chronic pain all over, when your bones are literally disintegrating, when your muscles are in a constant spasm, when your nerves are mangled, when you get no sleep and even when you do your body doesn't interpret it as sleep so you're always exhausted. You try it! You try having to lipread ALL day long, especially when you're legally blind so seeing just the world hurts your eyes, let alone lip reading. Again, you try it!
Today is just one of those days. I have my good days, normal days, and bad days. Today is in between normal and bad. I had a couple good days this week. I used them unwisely. My best friend has given me a week of missed childhood experiences and it was absolutely amazing. The problem was, I've been having so much fun that I ended up using all the spoons from those days, the days before, and the days ahead. I forgot to pace myself. I didn't think to tell him that I needed to just breathe for a minute, take a break, and just start again the next day. I think that's been the hardest part through all of this; pacing myself. That and losing the life I had before. It's rare that I have fun days, or days where I feel somewhat okay. So when I do have them, I usually go all out. However, that usually lands me in bed for the next week. I also used to have a very active lifestyle. I was a gymnast, I broke horses, I skateboarded, went to the snow, rock climbed, I rode dirt bikes, quads, and dune buggies. I did so much and I'm so grateful that I even had the chance to do any of that at all. The thing is though, it's hard now. I know what I'm missing and it makes me go that much more crazy when I go out and see other people doing things like that when I know I just can't. One thing my best friend and I do together is going to the park to kick a ball around. Of course it's a beach ball because I would break bones or tear ligaments on a soccer ball or something like it. Hell, I ruptured my quad tendon and tore my quad muscle a few weeks ago just by kicking the beach ball. I know kicking a ball back and forth with someone doesn't seem like much fun for anyone over the age of four but for me it's so freeing. It's the only type of exercise or 'sport' I get to experience anymore. We usually kick it around for however long I'm able to stand up out of my wheelchair. It does put me in bed for a few days afterwards whenever we go out and play but it means so much to me. It helps me feel somewhat normal, even if I have to go back home to hook myself up to machines, hooking up my PICC line, putting on my oxygen tank, taking handfuls of medications, and going to bed for a few days. When we are playing, it takes everything in me to not run. I know I physically can't run but I think if I pushed myself I may be able to. The problem is, if I did, I would hurt myself. I would break bones, tear tendons, and much more all because my body just can't handle the force and movement of running. I see him running for the ball when I kick it way off somewhere else and I want to do the same but I can't. I feel so lucky I'm able to do that at all though. I know I won't be able to for much longer. I'm starting to have to use my wheelchair more and more as time goes by. For now, I'm just going to enjoy the good days I do have, even if I do push myself too much.
Thursday, April 28, 2011
Alone
How are you feeling today?
Sick. Exhausted. Lonely.
You always feel sick, exhausted, and lonely.
Yeah, I know. I don't want to feel that way anymore.
Well I hate to break it to ya, but you're always going to feel sick and tired. And if you don't want to feel lonely, why don't you just find a friend?
I have a friend. Shouldn't that be enough?
I'm feeling extra lonely lately. Yeah, it seems like it would be an easy fix. It seems like all I'd have to do is go out and make some more friends, right? Wrong. It's not that simple. This kind of lonely really can't be filled with the physical associating of people. What I'm feeling is more like a general sense of being alone, in my mind, in life, in everything. It's more of a mental state rather than physical. I have friends. I have a best friend, a boy friend, and lots of other friends/acquaintances. However, at the same time, I have no one at all. I have God and I know that. I'm working on my relationship with Him. I'm meaning more of a physical being who knows me on a mental level. Make sense? I don't have one person on this Earth who knows the real me. Not one. No one knows my life, my past, how I grew up. No one knows what I know and how much, my emotions, my thoughts. I mean, my friends know my real personality and sense of humor for the most part, but so does any stranger who talks to me for five minutes. I hold back so much and the thing is, I don't think I stop myself from letting people in because of my fear of what they may think of me, I think it's more the fact that I don't even know myself. I've been trying to find myself these past few years. I've been trying to learn who I am. It's just so complicating. I need to change some things about me for the better. I don't mean the little things like my hair or how I dress. I mean some big things. I can't make true friends and let people in for the first time if I don't know or like myself yet. I have addictions I need to get over before I can become someone worth being true friends with. I need to learn how to be someone who isn't afraid of letting people in on the truth, rather than lying to people trying to make things sound better than they are. I just need to learn how to be me, the real me. Because right now, all I know how to be is a fake me. I feel like the fake me has become the real me. I can't accept that, I need to change that.
Sick. Exhausted. Lonely.
You always feel sick, exhausted, and lonely.
Yeah, I know. I don't want to feel that way anymore.
Well I hate to break it to ya, but you're always going to feel sick and tired. And if you don't want to feel lonely, why don't you just find a friend?
I have a friend. Shouldn't that be enough?
I'm feeling extra lonely lately. Yeah, it seems like it would be an easy fix. It seems like all I'd have to do is go out and make some more friends, right? Wrong. It's not that simple. This kind of lonely really can't be filled with the physical associating of people. What I'm feeling is more like a general sense of being alone, in my mind, in life, in everything. It's more of a mental state rather than physical. I have friends. I have a best friend, a boy friend, and lots of other friends/acquaintances. However, at the same time, I have no one at all. I have God and I know that. I'm working on my relationship with Him. I'm meaning more of a physical being who knows me on a mental level. Make sense? I don't have one person on this Earth who knows the real me. Not one. No one knows my life, my past, how I grew up. No one knows what I know and how much, my emotions, my thoughts. I mean, my friends know my real personality and sense of humor for the most part, but so does any stranger who talks to me for five minutes. I hold back so much and the thing is, I don't think I stop myself from letting people in because of my fear of what they may think of me, I think it's more the fact that I don't even know myself. I've been trying to find myself these past few years. I've been trying to learn who I am. It's just so complicating. I need to change some things about me for the better. I don't mean the little things like my hair or how I dress. I mean some big things. I can't make true friends and let people in for the first time if I don't know or like myself yet. I have addictions I need to get over before I can become someone worth being true friends with. I need to learn how to be someone who isn't afraid of letting people in on the truth, rather than lying to people trying to make things sound better than they are. I just need to learn how to be me, the real me. Because right now, all I know how to be is a fake me. I feel like the fake me has become the real me. I can't accept that, I need to change that.
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