I feel like lately, I am always waiting. Always waiting for something to happen, for something to work out, for something to become ok. Always waiting.
One thing I am waiting for is for my manager to find us a new contract so I can get back to work. It sucks that our candidate didn't win in the elections and therefore we lost our contract. I really hope he finds something...if he doesn't I don't know what I will do. This job is perfect for me, it's a work from home and I can basically build my own hours. It's perfect for a spoonie. But I just don't know how much longer I can wait. We don't have any money, and things are getting tough. I've looked at "regular" jobs, but I just don't see myself being able to handle any of them. *sigh*
One thing I'm waiting for money for is to get a membership at a pool or a season pass to the beach. Everyone says that swimming is great exercise for fibro, and easier on the body then most other exercises. I need exercise so bad. My body is so weak, and I've gained alot of weight. I need to do something, and I feel like this is the best bet. I just wish it wasn't so damn expensive to do so. Has anyone had any luck finding cheaper ways of doing this? Will you share please?
Another thing I'm waiting for is my thyroid medication to get in and work. I was told it can take 4-6 weeks, and it's been 3 weeks today. There are some days I think it is working, because I can stay up for the whole day....but there are other days when I sleep so much it's ridiculous. I mean sure, I know I'm still going to have some fatigue due to Fibro, but my doctor seems convinced that this is going to actually make a difference, so I'm holding on to the hope. And waiting.
And as much of a downer as this makes me sound...you know what I'm waiting for the most? For things to get better. That's really all I want.
Wednesday, June 23, 2010
Wednesday, June 16, 2010
Venting.
Ugh. I'm just so sick and tired of living my life like this. Like what, you may ask? Living it with fibromyalgia and all the other diagnoses I have. I honestly do feel bad saying all of this, because I know there are many people in this world who are worse off then me, and it makes me feel guilty, but at this point, I just can't help it.
I'm sick and tired of being sick and tired. I'm tired of people not understanding what I'm going through and not believing that there is nothing wrong with me. I'm tired of being 21 and feeling like I am at least 80 most days. I'm tired of not being able to go out and have a good time without paying for it later. I'm tired of constantly being in so much pain. I'm tired of being so tired that sometimes I can't even get out of bed. I'm just so worn out...both physically and emotionally.
My life really isn't my own anymore. It's like its been taken over by some kind of horrible monster, and it's left me with this, which some days I really can't even call a life. And I try to hold on to hope that someday it will get better, and maybe someday they will find some kind of effective treatment. But really, what if they don't? Do I really have to live like this for the rest of my life? I don't want to. I really want my life back, is that really too much to ask? Sometimes I feel like it is, since it never happens.
I try to be a positive person, I really do. And I try to stay strong. But it's hard to do these things when you're faced with all of this. Sometimes, I just can't help but get down about it. I mean, who wouldn't? It's so hard to be upbeat and act like everything is going to be ok when you really don't know that. Sure some things will be ok but I will always have these problems. It will always be like this for me. How can that NOT get me down?
I'm trying, I really am. But sometimes, I just feel like I'm not strong enough for all of this anymore.
I'm sick and tired of being sick and tired. I'm tired of people not understanding what I'm going through and not believing that there is nothing wrong with me. I'm tired of being 21 and feeling like I am at least 80 most days. I'm tired of not being able to go out and have a good time without paying for it later. I'm tired of constantly being in so much pain. I'm tired of being so tired that sometimes I can't even get out of bed. I'm just so worn out...both physically and emotionally.
My life really isn't my own anymore. It's like its been taken over by some kind of horrible monster, and it's left me with this, which some days I really can't even call a life. And I try to hold on to hope that someday it will get better, and maybe someday they will find some kind of effective treatment. But really, what if they don't? Do I really have to live like this for the rest of my life? I don't want to. I really want my life back, is that really too much to ask? Sometimes I feel like it is, since it never happens.
I try to be a positive person, I really do. And I try to stay strong. But it's hard to do these things when you're faced with all of this. Sometimes, I just can't help but get down about it. I mean, who wouldn't? It's so hard to be upbeat and act like everything is going to be ok when you really don't know that. Sure some things will be ok but I will always have these problems. It will always be like this for me. How can that NOT get me down?
I'm trying, I really am. But sometimes, I just feel like I'm not strong enough for all of this anymore.
Wednesday, May 12, 2010
Fibromyalgia Awareness Day
So, today is May 12th, Fibromyalgia Awareness Day. (And as a sidenote, I'm annoyed that I just had to add fibromyalgia to my computer's dictionary.)
I'm not doing much for awareness this year. I have my awareness t-shirt on, but I'm not really leaving the house today. I have no real need to. Last year, I cut up ribbons and made purple ribbons and passed them out to various places. Could of done that this year, but quite frankly, I just don't have the energy.
Ahhh fibro. What to say about it? What to say about a disease that has literally taken my life away? A disease that has made me feel much older then I am? A disease that has changed everything I've ever known?
It has completely and absolutely changed everything for me. I'm 21 years old, and most days I feel like I am at least 80. I have a hard time going out or doing fun things that I used to do, my body just can't handle it. I'm in constant pain, worse pain then I could have ever even imagined before it, and am so exhausted, no matter how much or how little I sleep. My life is not my own anymore, it has been taken over by some kind of horrible monster. A monster who has taken my life away, and left me with this, which sometimes I can't even call a life. Most days it just doesn't feel like it.
But I'm not gonna give up. I can do this. There is hope. I must remember that. Someday, things will get better. Right?
#Fibromyalgia Awareness Day 2010
I'm not doing much for awareness this year. I have my awareness t-shirt on, but I'm not really leaving the house today. I have no real need to. Last year, I cut up ribbons and made purple ribbons and passed them out to various places. Could of done that this year, but quite frankly, I just don't have the energy.
Ahhh fibro. What to say about it? What to say about a disease that has literally taken my life away? A disease that has made me feel much older then I am? A disease that has changed everything I've ever known?
It has completely and absolutely changed everything for me. I'm 21 years old, and most days I feel like I am at least 80. I have a hard time going out or doing fun things that I used to do, my body just can't handle it. I'm in constant pain, worse pain then I could have ever even imagined before it, and am so exhausted, no matter how much or how little I sleep. My life is not my own anymore, it has been taken over by some kind of horrible monster. A monster who has taken my life away, and left me with this, which sometimes I can't even call a life. Most days it just doesn't feel like it.
But I'm not gonna give up. I can do this. There is hope. I must remember that. Someday, things will get better. Right?
#Fibromyalgia Awareness Day 2010
Tuesday, April 20, 2010
Not Feeling It.
I haven't written in here in forever. This is very hard to keep up with, I don't know why. But I just never seem to have the time or energy to write in this.
Anyways, I had tremendous nerve pain for a while, my I had a tooth where a piece was broken off and the nerve was exposed. It caused the worst pain I have ever had in my life. I even ended up in the ER one night because the pain was so bad. They numbed the nerve which was the best thing for me. It gave me one night of sleep at least. I didn't sleep for like a week because the pain was so bad. Anyways, today I finally had the tooth pulled, so I'm hoping that'll be the end of the pain.
Work is getting too much for me, physically. I am in so much pain and so exhausted after a shift. And I don't know what to do about it. I can't stop working, because if I do we won't have enough money to live. But if I keep working, I just keep getting sicker and sicker. Fibro is not usually a condition that worsens, but I'm convinced mine is. What I really need is some sort of desk job or work at home job or something, but I'll be damned if I find anything.
*sighs* I'm just not happy with the way life is going lately.
Anyways, I had tremendous nerve pain for a while, my I had a tooth where a piece was broken off and the nerve was exposed. It caused the worst pain I have ever had in my life. I even ended up in the ER one night because the pain was so bad. They numbed the nerve which was the best thing for me. It gave me one night of sleep at least. I didn't sleep for like a week because the pain was so bad. Anyways, today I finally had the tooth pulled, so I'm hoping that'll be the end of the pain.
Work is getting too much for me, physically. I am in so much pain and so exhausted after a shift. And I don't know what to do about it. I can't stop working, because if I do we won't have enough money to live. But if I keep working, I just keep getting sicker and sicker. Fibro is not usually a condition that worsens, but I'm convinced mine is. What I really need is some sort of desk job or work at home job or something, but I'll be damned if I find anything.
*sighs* I'm just not happy with the way life is going lately.
Sunday, February 28, 2010
A Letter From Fibromyalgia
A LETTER FROM FIBROMYALGIA
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.
Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!
In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.
Have a nice day!! (ROFL),
Fibromyalgia
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.
Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!
In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.
Have a nice day!! (ROFL),
Fibromyalgia
Sunday, February 7, 2010
Good News!
Soooooo I have some good news. I don't need surgery on my knee! It looks like it's just a minor tear that should heal on its own. I do need physical therapy, but that's nothing compared to needing surgery! And my MRI looked good, so that's a positive thing too. Thank God! I am SO relieved! I was so scared and so stressed and just ahhh! It's about time I finally get some good news!
That's really all I have to say today, just wanted everyone to know the good news! :)
That's really all I have to say today, just wanted everyone to know the good news! :)
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