Today, I am just over everything. I can't really figure out why. I have SOO much to look forward to.
Prom is on Saturday. I'm taking one of my best friends, Jonathan, as my date, and we're going with a huge group of friends. We have pictures scheduled, and a reservation for dinner at a great local Italian restaurant. We are going to party at prom for a while, then we have after prom hosted by the school at a local Go-Kart and Arcade place.
I have a choir concert a week from Saturday, which is great but also sad. It's my last time to perform for an audience as a member of the Indianapolis Children's Choir.
Graduation is less than three weeks away.
We're going on a family vacation for the first time in a couple years.
I start college at my dream school in the fall, doing exactly what I want to do - Music Therapy.
It's all so exciting.
But something is holding me back.
Prom is on Saturday. I'm taking one of my best friends, Jonathan, as my date, and we're going with a huge group of friends. We have pictures scheduled, and a reservation for dinner at a great local Italian restaurant. We are going to party at prom for a while, then we have after prom hosted by the school at a local Go-Kart and Arcade place.
I have a choir concert a week from Saturday, which is great but also sad. It's my last time to perform for an audience as a member of the Indianapolis Children's Choir.
Graduation is less than three weeks away.
We're going on a family vacation for the first time in a couple years.
I start college at my dream school in the fall, doing exactly what I want to do - Music Therapy.
It's all so exciting.
But something is holding me back.
And you know what that is? It's this stupid and ridiculous pain.
I have to account for so much more every freaking day of my life.
I have to think through every step of the day and decide if extra things are worth the extra pain.
For prom, I've had to think what shoes I can deal with. If I will be able to take medicines and still drive (uh, no.). Everything is so much harder.
I AM SO SICK OF THIS.
Nearly 7 years. SEVEN YEARS.
I'm 18 for Christ's sake.
What does this mean for my future? Am I going to be able to walk 5 years from now? How much worse are my lungs going to get?
Oh yeah, that's another concern. I was stupid and slept with my windows open Saturday night. I have now been blessed with a nasty cold. PLUS it's raining, and my lungs are flaring. I feel like I'm breathing through a very tiny straw.
Each breath takes effort. I have to think about breathing.
Every breath I take sends a piercing pain through my body, and I feel as though My lungs are being torn apart.
And you know what sucks about breathing?
I HAVE TO DO IT.
When my legs flare up, easy. Sit down, lay down. Stop using them for awhile to regain strength and control.
I CAN'T JUST STOP USING MY LUNGS.
That'd be pretty bad. Really bad, actually. And I am 100% positive that would not end well.
So here I am. Ripping my own lungs apart with each breath.
Plus, fibromyalgia is being a witch today. I've got it all going on. Fatigue and headache, muscle stiffness and soreness... ervery symptom has joined me today. I am so done with this.
I wish I could just get a break.
These next few weeks are about to be some of the greatest weeks of high school. Senior prom, senior spirit week, exempting finals, and graduation.
But no, I must be plagued by pain.
I think that's one of the hardest things for me. In no way, shape, or form, would I want any of my classmates to EVER have to experience what I experience on a daily basis. It's an absolute living hell. I just wish I could relate better with them.
I mean, I know everyone has problems. But when I'm experiencing days like today, it's just hard to see. I feel like they all have it great.
No pain. No fatigue.
Don't say fatigue is just being tired. I know they're tired. Everyone is. But fatigue is so much more than being tired.
I know what it's like to just be tired. I've been there.
But I also know and experience the deep plague of this fatigue. You're enveloped in this tiredness and can't escape. The weight of the world gets heavier. It's crazy. You're just sluggish, but you do everything you can to hide it. Which makes you even more fatigued.
I just hate that I have to live with this. Why me? Why did God choose me as one of his strong soldiers to battle chronic illness?
I should be enjoying everything. Friends, family, prom, graduation, open houses, vacation, college, the future... I shouldn't have to be plagued by the pain and fatigue on a daily basis. It's all happening 24/7. It literally never ends.
We need research. Badly. We need someone to research and find a cure for RSD/CRPS. For all diseases. I've wanted to hold some sort of fundraiser or something for years to benefit RSD/CRPS research.
I've been brainstorming a lot recently. I think I actually came up with an idea. I pitched it to Ethan last night, to see if he'd want to get in on it and do a duo fundraiser for both POTS (Dysautonomia) research and RSD/CRPS research.
He seemed pretty into it, so I'm gonna talk to my parents at some point when life "calms down" a bit and see if they like it.
All I know is I want a cure. I don't want to hear anymore of the stories. I don't want to lose anymore RSD friends to suicide. I don't want anyone to ever feel that lonely. I want there to be hope for RSD. Hope for a cure.
heck, I want there to be hope for all chronic illness. I want Ethan cured. I want Chelsea, Natalie, Abby, Hailey, Rachel, Chris, Rose, Mary, Kara, Dawn, Shelly, Keanu... everyone. I want them cured.
I want a cure-all for chronic illness.
I've prayed for one for years. And I've heard it all before, God works on his own time, in his own way to make it all worth it and to answer our prayers. I've heard how he gives his toughest battles to his strongest soldiers. I've heard it all. I believe it all...
I just wish this prayer would work. I'm so sick of being forced to live life like this.
But I don't know what to do anymore. I don't know how to keep going.
But I just have to. I just have to keep pushing through. Maybe it will all calm down soon. Maybe... Hopefully.
"How can I instill such hope, and be left with none of my own?" - 'Hope For Now' by City and Colour,
I have to account for so much more every freaking day of my life.
I have to think through every step of the day and decide if extra things are worth the extra pain.
For prom, I've had to think what shoes I can deal with. If I will be able to take medicines and still drive (uh, no.). Everything is so much harder.
I AM SO SICK OF THIS.
Nearly 7 years. SEVEN YEARS.
I'm 18 for Christ's sake.
What does this mean for my future? Am I going to be able to walk 5 years from now? How much worse are my lungs going to get?
Oh yeah, that's another concern. I was stupid and slept with my windows open Saturday night. I have now been blessed with a nasty cold. PLUS it's raining, and my lungs are flaring. I feel like I'm breathing through a very tiny straw.
Each breath takes effort. I have to think about breathing.
Every breath I take sends a piercing pain through my body, and I feel as though My lungs are being torn apart.
And you know what sucks about breathing?
I HAVE TO DO IT.
When my legs flare up, easy. Sit down, lay down. Stop using them for awhile to regain strength and control.
I CAN'T JUST STOP USING MY LUNGS.
That'd be pretty bad. Really bad, actually. And I am 100% positive that would not end well.
So here I am. Ripping my own lungs apart with each breath.
Plus, fibromyalgia is being a witch today. I've got it all going on. Fatigue and headache, muscle stiffness and soreness... ervery symptom has joined me today. I am so done with this.
I wish I could just get a break.
These next few weeks are about to be some of the greatest weeks of high school. Senior prom, senior spirit week, exempting finals, and graduation.
But no, I must be plagued by pain.
I think that's one of the hardest things for me. In no way, shape, or form, would I want any of my classmates to EVER have to experience what I experience on a daily basis. It's an absolute living hell. I just wish I could relate better with them.
I mean, I know everyone has problems. But when I'm experiencing days like today, it's just hard to see. I feel like they all have it great.
No pain. No fatigue.
Don't say fatigue is just being tired. I know they're tired. Everyone is. But fatigue is so much more than being tired.
I know what it's like to just be tired. I've been there.
But I also know and experience the deep plague of this fatigue. You're enveloped in this tiredness and can't escape. The weight of the world gets heavier. It's crazy. You're just sluggish, but you do everything you can to hide it. Which makes you even more fatigued.
I just hate that I have to live with this. Why me? Why did God choose me as one of his strong soldiers to battle chronic illness?
I should be enjoying everything. Friends, family, prom, graduation, open houses, vacation, college, the future... I shouldn't have to be plagued by the pain and fatigue on a daily basis. It's all happening 24/7. It literally never ends.
We need research. Badly. We need someone to research and find a cure for RSD/CRPS. For all diseases. I've wanted to hold some sort of fundraiser or something for years to benefit RSD/CRPS research.
I've been brainstorming a lot recently. I think I actually came up with an idea. I pitched it to Ethan last night, to see if he'd want to get in on it and do a duo fundraiser for both POTS (Dysautonomia) research and RSD/CRPS research.
He seemed pretty into it, so I'm gonna talk to my parents at some point when life "calms down" a bit and see if they like it.
All I know is I want a cure. I don't want to hear anymore of the stories. I don't want to lose anymore RSD friends to suicide. I don't want anyone to ever feel that lonely. I want there to be hope for RSD. Hope for a cure.
heck, I want there to be hope for all chronic illness. I want Ethan cured. I want Chelsea, Natalie, Abby, Hailey, Rachel, Chris, Rose, Mary, Kara, Dawn, Shelly, Keanu... everyone. I want them cured.
I want a cure-all for chronic illness.
I've prayed for one for years. And I've heard it all before, God works on his own time, in his own way to make it all worth it and to answer our prayers. I've heard how he gives his toughest battles to his strongest soldiers. I've heard it all. I believe it all...
I just wish this prayer would work. I'm so sick of being forced to live life like this.
But I don't know what to do anymore. I don't know how to keep going.
But I just have to. I just have to keep pushing through. Maybe it will all calm down soon. Maybe... Hopefully.
"How can I instill such hope, and be left with none of my own?" - 'Hope For Now' by City and Colour,