Sleepless

Tonight as I lie here sleepless, tossing and turning in a hopeless search for comfort, I wonder what I did to deserve this life. I wonder what I could have possibly done to deserve every single inch of my body aching. Every joint dislocating. Every bite is agony. Why does it hurt just to breathe? Such a simple function of life, what i would give for even one breath without pain.. 

As I lie here I realize I am angry. I’m angry at my body, angry for making me fight it every day just to survive. My body, my closest friend when I was young, my freedom, my wings. My body, The physical embodiment of my imaginative play, has turned against me

 You would be angry too, had you lived what I lived. 

“How are you?" you’re asked. Everything hurts and yet you still reply with a smile "Fine, and you?" Speaking the truth would be too uncomfortable. 

Your joints so unstable they give out with the slightest pressure. “Lose some weight, you're just fat”

Your limbs are weighed down with anvils, too weak to blink. “Attention seeking”

Your skin is on fire, your lover cannot comfort you, touch is agony. “Hypochondriac”

Your bones are shattered, you set your foot down, and tears well. Keep going, that's just the first step. “Drug seeking”

When you have pain in every part of your body, you cannot leave your bed, housework and hygiene neglected. “Lazy”

Pressure. Your head is full of so much pressure. You feel you might explode. “Crazy” 

Your heart is racing. Chest pain. Blood pressure dropping, vision fading. You hit the floor. “It’s just anxiety”

Brain fog. Words escape your grasp. Simple thoughts and problems cause physical pain. Where am I? What am I doing? Dreams of college and a career fade away. "At least you don't have cancer" 

No, but what is this life if just suffering in perpetuity? If there is no hope of a cure, no end in sight? 

I'm angry. 

The never ending appointments. Which doctor is this? Taking notes. 

Explain everything in detail to the nurses, only for the doctor to know nothing when he arrives. 

No answers. “Come back in six months” Six  months? I'm sick now.

Please help

“We don't know what to do for you”

Who else might? You were my last hope,

Please help

“Try this med” 

We've already tried this med, it doesn't help.

Please help

“We know what’s wrong with you” 

Thank God, let’s fix it. There’s no cure.

Please help 

Painful tests and traumatic procedures. It never ends. Phone calls, I'm on hold again. And again. 

“Yes you can make an appointment, our next availability is 9 months out” 

“Just advocate”. I try so hard, nobody cares, so then I do nothing. I just want to live. 

Please help.

Do I keep trying or give up? The fatigue sets in.

Please help.

In the morning will the day be a little brighter? The pain a little lighter? For once, just once, I just want to wake up and feel like I can win this battle, the wars not over

I want to open my eyes, rested and painless, and feel like my day is going to be a success. Not awake and face yet another day, another battle where it's probable that I will not only suffer, but ultimately lose.

It's so difficult. It's getting harder by the day. It hurts the most that nobody understands. In a room full of people, I am so alone. 

I wish more than anything to be normal, healthy, exciting, and live my life. 

I want nothing more than to go to work, to see my friends and enjoy myself rather than lying in my bed, slowly fading away. 

As I lie here in bed tonight, all I want is for sleep to come take me.

 When i'm asleep, I'm no longer sad, the pain eases, the anger fades. I'm not lonely. The problem is, I cannot sleep. The pain is covering every part of me. The toll the day took on me is heavy. 

When the world is asleep, I’m alone, it's just me and my pain. Alone with this disease that haunts me. Gosh that ceiling is interesting. The little irregularities in the paint, the way the dust on the ceiling fan sits.  I'm desperate for a distraction. Please make it end. Oh why did my body turn against me? Oh why did It steal my life away from me? My plans, my dreams….

I’m angry. Because for a bit I was happy. For a minute I was getting better, even just a little

For a moment I had hope. But in a second I lost it all again. And that's when I realized it was not anger, But grief. 

Tonight as I cry silently in bed, sleep evading me, I am not a fighter. I’m not a warrior. I’m not an inspiration. All I am is tired. my body is fighting a war inside and its left my soul as collateral damage.

Please help.

-Giusiana