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The Fibro Chronicles
I try to live my life the best I can everyday. I live, I breathe, and I try to look at everything with optimism. Unfortunately, that isn't always enough. Living and breathing is a tricky game to play when you are a teenager living with fibromyalgia and all of the side effects that come along with it. Everyday is a new adventure and for most people, living with the pain would be hard enough. But living with something that others have never felt can be worse. Here is my story, my life and my words.
I wake up before I should almost every morning. I didn't sleep last night. The nausea builds up in my stomach before I even open my eyes. “Keep them closed and turn on my side”, I decide. As I shift my freezing body, my eyes are forced open and I utter a strangled cry. A sharp stabbing nail has been shoved into my hips. Even as I turn onto my back once more, the throbbing sensation continues. “Oh so it will be one of those days, damn it I wanted to take the dog for a walk.”
As I lay in bed, still drained from waking up every hour to pee and change positions, I become aware of my body as a whole. The nausea is making the room spin, but that should go away soon I hope.
A sudden stab and gasp for breath.
I suppose that means my bladder is full again! I try to lie in bed as long as I can. My colon is still sore from last night's spasm. I ate the “wrong” food again last night and had to pay for it in the price of breath taking God awful cramps. Thirty seconds of feeling that my intestines are going to explode every four minutes up to five hours at a time. And when that happens there is nothing that can be done about it other than sitting there trying to breathe and stop crying. Moving is out of the question, so it's like lying there waiting to die after you've been shot in the gut. Nothing to do but sit and pray.
I can't lie in bed anymore, if I do, the pain will get even more intense. I pull myself out of bed and my bones creak. As seventeen, I toddle down the hall like a seventy year old woman.
I come back from the bathroom and my bladder is still screaming. I crawl into bed and pull at least four blankets over me. Its winter, my bad season and my joints ache at the thought of walking to the bus. Choking for breath I grab the left side of my chest. “Heart pains.” White hot screw drivers driven deep inside my heart. It's sudden and doesn't last long, but God when it does, it's unbearable. When I first started getting them, I thought I was having a heart attack. I've had them as long as I can remember and I've learned how to manage it but it doesn't make the pain any better.
Will I go to school today? It does look really dark and cold out. I let out a yawn, despite my fatigue and my body's protest, my mind is bored. I crave stimulation. “What the hell, maybe I'll risk it and today will be a good day! I will feel like everyone else and everything will just be good.”
And maybe the tooth fairy is real too.
Oh God, here comes the anxiety. I feel it creeping down my throat into my gut. This is a different type of pain, as if you can't breath.
“What do I wear? Will anyone talk to me? Will I even make it to the bus without collapsing?” 1,2,3,4 outfits. “Oh man I look lame.” My heart flutters and my stomach clenches tightly. It aggravates all of the other pain, but I'm too focused on my heavy breathing to notice. 5,6,7,8. Okay, this will work. I cringe when I look in the mirror. I spend thirty minutes trying to make my makeup look perfect. It doesn't. Four hairstyles later and I'm ready. By 8 in the morning I'm already debating on whether or not I should go back to bed. I can't give up and I'm not a quitter. I leave my house with two jackets, a hat, boots and a long sleeve shirt. My teeth chatter and I'm freezing. It's winter in Arizona, a whopping 68 degrees. My hips are killing me as I limp the rest of the way to the bus. I would bite my nails as I stand alone to wait for the bus, but my hands are swollen from the cold.
Day has begun.
I get to school and try to maintain my famous optimism, “Kaiti is always smiling!”, but watching everyone is making me tired. I want to go home but I have no way of getting back. Just gotta push myself through it, I tell myself as I hold my aching stomach. So cold. I really hope I don't throw up in front of everyone.
The bell rings and I shuffle up the stairs. There are too many people.
It's lunch and I've had enough. My bladder is screaming again and I'm starving. I'd eat but it's easier to just go hungry rather than accidently eat the wrong food. A grumbling stomach is better than an angry one.
As I head to the library to spend my lunch doing something “safe” (reading). I see my old friends eating and joking around. They look so normal and young. I feel so old and alone as I watch them laugh.
“Kaiti over here!”
“Smiles, where have you been?”
“Oh we thought you died.”
“Are you still sick?”
I hate those questions. When a person looks normal on the outside it's hard for others to accept that they are in pain or that they “feel sick”. The best answer I've been able to come up with as acceptable to the general public is to smile and say, “I'm alive”. People will laugh and move on. As it should be I suppose.
So like a ghost I move on through the day, there but not truly there. My body becomes a memory of who I used to be.
By the time I get done with school. I am physically, mentally, and emotionally worn out. My eyes are glassy and my head it throbbing. If my stomach gets any worse I'm either going to throw up or pass out. I go and sprawl out on my mom's bed. I can relax there and I love talking with her. She doesn't make me feel so alone. But even just sitting there and talking gets to me quickly. I need sleep, now. I crawl back to my bed and crash into a deep sleep.
Well as deep as sleep can be for me.
I wake up confused. I believe it's the next day and I wonder why it's so dark. “Damn, the day still isn't over?”
However, night is my favorite part of the day. I feel awake and alive and …. Normal. It's when I can think clearly and write. Yes, I still feel everything, but somehow when I'm able to write, I can think about other things.
My sleeping meds haven't kicked in yet and I don't have the energy to write anymore. I settle back into be and my body is throbbing. Will I sleep tonight? I start feeling sick to my stomach again. I try to pray asking God to bless my friends and family and take away my pain, but I'm ironically interrupted by a shooting pain in my colon followed by the throbbing of my bladder. Will it ever end?
Will I ever sleep?
I just don't know what to do anymore.
I wrote this as an insight into my world. I live it everyday and I do so quietly because it's hard to show people what it's like to live with fibromyalgia, IBS, anxiety and interstitial cystitis. It's lonely and frustrating but I refuse to give up. I can't give up because I have so much more to do in this world.
“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.”