That photo quote above, pretty much says it all right now. I feel like whatever I do doesn't matter. I feel like no matter how hard I try, I'm going to be stuck in this rut for the rest of my life. I'm feeling completely overwhelmed.
Every time I hear, or read, someone say "If you don't like your life, change it instead of complaining about it" I think I die a little more inside. Way easier said, than done buddy. Trust me.
I didn't ask to get sick. I never in my life wished that I'd get sick. No matter how hard I try, I can't change it though. I am sick, and there isn't a cure. There isn't even a precious magic pill to make me feel better.
I've tried to change that. I've tried to educate and advocate for research funding so that maybe someday there will be a cure or a magic pill. It's hard to get people to listen though. When someone does listen, they still just can't grasp the concept of how truly horrific it is to have to live like this.
I can't make my own children understand, so how am I going to make a stranger understand? I thought my oldest son understood, until today. We were talking through Facebook messaging and he said "Your life is awesome". I said "Hmm ...I'm single without any hope to meet a man because who wants someone that's sick ..and I hardly ever leave the house to meet anyone. I hardly sleep and when I do I feel like I haven't. I hurt so bad that sometimes I cry. I live off $700 a month because I can't work. My house is falling apart. Literally falling apart, 1/4 of the dining room ceiling fell in the other day and I can't afford to fix it. Yep, I see what you mean. My life is awesome". He then replied with "Yeah but you don't have to work or go to school. Awesome". I was starting to get mad. Frustrated. Whatever you wanna call it. I replied with "I wish I could work. I truly do. You don't have a clue how lonely my world is. I'd love to be able to make money so I could go do things, and I'd love the social interaction of being around other adults every day. I'd love to get out of the house and have somewhere to go. To be able to afford the gas to go, and feel good enough to go!
The next thing he said was "I hate it. I just wanna sit in bed all day every day and never leave". I told him "If you had to do that ...if it wasn't a choice ...you'd feel differently. Believe me, it gets real old, real quick".
At this point, it slapped me in the face that even my own grown son is a DHAC (a person that doesn't have a clue). It made tears spring to my eyes. Then again, most things have been doing that to me lately.
To his credit, I know he's tired and frustrated right now. He's working 60 hours a week and going to college full time. He's been averaging about 4 hours of sleep a day. But man, if only my body would allow me to work 60 hours a week and go to school too. What an awesome feeling of accomplishment and self-pride it would bring.
I've tried getting local media outlets to listen and run a story. I don't even receive a response. For darn close to 2.5 years I've tried to get funding to start giving seminars on living with chronic pain. That's failed miserably. I've tried finding free venues to hold them so that I wouldn't need so much funding. That too has failed.
I don't like ...no wait, I hate being overweight and I've tried to change that. To my own credit, I have lost a bunch of weight. 51 pounds. But I can't seem to lose any more and get to a healthy weight, because all of the stupid meds I take, make you gain weight. You know, those meds that all of the doctors and commercials hail to be the special magic pill that will give me back my life. The commercials flat out LIE. People listen to them though ...when they don't want to listen to us when we try to tell them the truth of what our lives are really like.
If I was ever able to start the seminars on a regular basis, then my money problems would be gone, too. I'd be educating people, advocating for all of us with chronic pain, plugging for research donations, and making a living for myself. Sounds like a win-win to me. I don't understand why society doesn't think so lol.
The point is, I don't like my life, and I've tried to change it to no avail. I've tried hard. So, so hard. All I'm left with, is the feeling of helplessness. Feeling like whatever I do, doesn't matter. I won't quit though. If I have anything at all lef in this miserable life of mine, it's hope. I'm hanging on by a thread right now, and if I give up hope, then that thread will break and I'll fall to eternity. I've been a stubborn, strong-willed person my entire life. Right now, I'm thankful for that. I'm determined. Determined to somehow, someway, turn this painful, sleep deprived, miserable life of mine into something good. To turn the lives of all chronic pain/fatigue sufferers into something good.
There is a difference folks, between surviving life and living it. Right now I'm surviving. Someday though, I'm going to live. Someday soon.
