Brain on Fire

Lost myself overnight…

I know you can’t see it, but if you look, can you see the terror in my eyes?

I don’t know what’s wrong with me.

I’m still in here, can’t you see?

I’m under attack

All I see is black

It’s taken my speech

It’s taken my memory

I’m no longer me, I’m changed

As a mood swing takes over my brain

Not sleeping for days on end

Everything I’ve ever loved is disappearing

Spasms, it’s controlling my limbs

Seizures, oh God, how will I live?

Hallucinations, I’m scared of what I might do

Psychosis, where am I?

Who are you?

Catatonic.

Behind my eyes, I scream for help, can you hear?

I want to die day after day

Even as I’m like this, I love you my dear

I only hope I can show you in any small way

Crazy. I’m losing myself

Am I crazy?

No

I’m not a liar

My brains on fire

-Giusiana

Hope’s Whisper

I’m trapped, ensnared in the suffocating embrace of overwhelming, never-ending pain, 

As I sit here, the line between life and death blurs into obscurity, a fragile boundary traversed by the weary and the downtrodden.

 And in the silence of the night, as the world slumbers unaware, I stand at the precipice of oblivion, tears streaming down my face,

torn between the longing for release, for relief, and the ever so faint glimmer of hope that dares to whisper, almost inaudibly: "Hold on, just a little longer….”

- Giusiana

Craving Touch

I miss human touch that didn’t hurt me. I CRAVE touch, I long for hugs, for sweet kisses. But it all hurts so bad. 

A brush against my arm creates a shock so hard I recoil. A tender embrace nearly brings me to tears. 

I do it anyway, for what is life without the comfort of human touch, but what would it be like if it didn’t make me flinch? I can’t even remember it. The comfort of being held is under the looming darkness of the pain that it brings.

-Giusiana

A Stomach’s Curse

A plate is set in front of me on the table, my favorite meal,

I go to take a bite but hesitate, what if I’m not able? I take a bite. Suddenly there’s a knife, stabbing me. It’s twisting inside me. 

The nausea washes over me in waves. I crumple into a ball on the floor and wait, The pain only relieved with time 

I sit up and force myself to eat. Holding back tears and nausea. Each bite is agony. 

A few hours later, the stabbing stops and I feel I can breathe again. I’m bloated and my stomach feels heavy and my heart is racing. Life slowly fades to normal but I’m scared. I love food, and yet I live in fear of the next meal

Oh why must my body stop digesting food on its own whim? Why must this be my curse forever?

-Giusiana

Drowning

My pain is constant. It is, but it’s not that simple

At low tide, I can still hear the oceans dull roar and feel the waves crashing, they’re knocking me down but I can get back up. Yet I am not drowning, I’m keeping my head above the water. 

At high tide those same waves, previously survivable, become violent and overwhelming, pinning me against the rocks, crashing over me relentlessly until I can’t breathe, 

just as I feel I might be able to get my head above water they come again, crushing me again and again so I can’t even catch a breath, not one. 

When the tide is low, I live in terror, knowing all I can do is helplessly wait for the waves to swallow me again, maybe this next time there will be no low tide to save me from the agony that it brings. Maybe this time will be the time I drown…

-Giusiana

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

A note about MCAS

Why must my stomach stop digesting food randomly? Why does my body decide that every aspect of the world is my enemy?

A guessing game. Russian roulette of life.  This food was fine yesterday, but now when I eat it it will kill me? 

Trigger my throat to close and body to break out in hives and me to lose consciousness and have a seizure?

Last night's leftovers would make a good lunch, but today they caused my heart to race and fingernails to turn blue

Yesterday I spent the day outside, tomorrow the sun will cover my body in hives… even my own tears burn my face 

How can I prepare for something so unknown? Never knowing if I’ll be okay. Nothing is safe

My grandmother's body decided that her own saliva was the enemy, is that my fate?

-Giusiana

When we aren’t healed..

If you’re chronically ill, and tend to run in Christian circles, you’ve probably been told that you should be grateful for your illness, you shouldn’t be upset that there is no cure because God is going to use us without being healed.

But after those same people pray for us and ask for healing, they ask “So are you feeling better yet?”, And when we say no, when still sick, they get upset. They tell us that we lack faith or we don’t truly want to be healed.

Yes, God can heal. I’ve seen things that can only be explained by a miracle, He does heal. But no, He doesn’t always heal. There is no guarantee of healing.

For those who pray for a disabled person and they aren’t healed: you immediately resort to blaming the person, saying they must not have faith or they want to remain sick, what does that say of Job? Was his faith not real? Did he not want to be relieved of his suffering?

As believers we are not guaranteed healing, in fact, the only thing that is certain for us in this lifetime is that we will suffer. We can believe and have the strongest faith and still not be healed.

Maybe I won’t get better. In all probability I won’t. But I can use my pain to encourage others, to let them know they’re not alone.

2 Corinthians 1:3-5 - Praise be to the… God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort that we ourselves receive from God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.

Job 13:15 - Though He slay me, yet I will trust in Him.

Romans 8:18 - For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Psalm 119:71 - It is good for me that I was afflicted, that I might learn your statutes.

John 16:33 - I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.

Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.