Restless doesn’t even come close to describing it.  Every cell in my body feels on fire.

What can I do?  I toss.  I turn.  I want to rip my skin off.

Are my levels up?  Are my levels down?

I’m itchy.

More needles today.  More needles tomorrow.

More head shaking.  More questions.

One foot in front of the other.  Face on.

It’s Monday.

One foot in front of the other.  That’s all I can do.

Back to work half time.

Much needed support and interaction.

Seeking a distraction.

Hospital weekly and another surgery accepted.

I have no options.

I will put on the smile and I will bluff my strength.

My choice is one foot in front of the other.

There is no other.

Being told that you are special and unique feels good when it comes from a place of care and support.  But when it comes from your doctor it’s scary and keeps you awake at night.

My stay in hospital was not due to a virus or cold.  It was due to my potassium being low and my blood being dangerously alkaline.  Apparently when your blood is too acidic you are at risk of your central nervous system shutting down and falling into a coma.  And at the other end of the spectrum if your blood is too alkaline you are at risk of seizures and death.  My blood is too alkaline.

This is all new to me.  The severe cramping in my feet and hands that I thought were part of my kidney failure I now know is because of my alkaline blood.  The consultants in the hospital apparently have never seen results like mine before.  I am apparently “rare” and a “challenge”.  Which right now is the last thing I want to be.  I want to know how to fix it.  I want to know what pill I can pop.  I want to know food to eat and what food not to eat.  I don’t want to die from a seizure.  I don’t want to be special.  I don’t want to be a rare disease.

What can I do?

Nothing.  They sent me home.  They shook their head.  They said sorry without making eye contact.  They sent me home with a tube of potassium tablets and a bruised right arm.  They sent me home with fear and questions.  They sent me home with appointments for more tests.

I’m scared.

But I carry on.  I have no choice.  One step in front of the other.  Just one more to deal with.

“My arm where you have inserted my drip is really sore”

“Your cannula in your right arm?”

“Yes that plastic tube in my right arm, my cannula”

“It’s not the plastic tube that’s hurting.  We’ve most likely burnt your veins with all the potassium we’ve been pumping into you.”

“Oh right.  Thanks.  Good to know….”

I can feel myself reaching my limit.  I need to get out of here.

I am tired of the poking and prodding.  I am tired of boiled vegetables and plastic sauces.  I am tired of the ringing bells and the smell of sanitizer.  I am tired of the vague answers and strange faces staring down.  I am tired of being treated like a science specimen waiting to be dissected.

I am a human being.  I need nurture and care.  I need to have a voice.  I need to have a choice.  I need to be in control of my own body.

I need to get out of here.

I can feel my emotions starting to boil to the surface.  I can feel the tears constantly burning behind my eyes.  I don’t want to fall back down my rabbit hole.  I’m standing on the edge.  I’m peering down.  I can see the blackness.  I can feel the blackness pulling me towards it.  I can feel it pulling me down into it’s damp dark depths.  I’m on the edge.

I don’t want to fall back down my rabbit hole.  I don’t want to collapse and give in.  But I’m struggling.  I’m struggling out here in the light.  It’s hurting me.  I’m confused.  I’m scared.  I don’t know what’s going on.  My results are bad.  They’re all concerned.  They’re confused.  They’re inflicting more pain.  More tests.  More needles.  More shaking of the head.

Talk me to me.  Tell me what you know.  Tell me what you don’t know.

I need to get out of here.  Why am I am back here?  How did this happen?

Beige walls are closing in on me.  A place of illness and death is not my sanctuary.

Hospital hell.

FACT:  Potassium and calcium in concentrate form hurt like hell when put through a drip and directly into your veins.

Fun times.

My first night back in my haven for the ill and dying has ended with a 4.45am flush, weigh and pee.

I’ll see you again in an an hour for a temperature check, blood pressure and blood test.

I’m back to the beginning.  Back in the beige walls and beeping machines.  Back to drips, needles and hourly blood pressure.  Back to being recognized by a tag on my wrist and my disease.  I am back but this time it’s different.

This time I know what they mean when they say my levels are low.  This time I go straight to the renal ward.  This time I can answer the questions.

I hate it here.  I hate the beds.  I hate the plastic pillows.  I hate that my face has already swelled up beyond recognition. I hate this soul destroying place but it saves my life.

Here’s my arm.  Take my veins.  Make it hurt to help me.  Then let me go.  Please let me go.

No sleep.  No comfort.  Hospital hell.

I believed in fairy tales.  I believed I would be danced off my feet by my very own Patrick Swayze.  I believed in me being a girl meeting a boy.  We would have struggles but love would conquer all and we would live happily ever after.

Now as a maturing woman my eyes are wide open but I am still weak for a romantic comedy.  Last weekend I went to the movies for my latest fairy tale fix.  The movie went along the winning formula of boy meet girl however it didn’t end with the normal roses and chocolates.  Instead it ended with a twist.  The boy and girl didn’t ride of into the sunset together.  Their story ended in heart break and tears.

Surprisingly this twist was inspiring.  It reminded me that we all get a bit lost.  It reminded me that even when life goes on a path you didn’t choose that there is still life to live.  It reminded me that we can find ourselves and grow and evolve into a brighter version if we are open to it.

Throughout this journey I’ve been fearful that I wouldn’t know how to turn lemons into  lemonade.  I’ve been fearful that I would lose myself in the loss of my life that I knew.  I was fearful that the rabbit hole I was down was too deep for me claw out.  Eight months ago I was a different me.

Eight months later, after my diagnosis, I have fought my way out of the rabbit hole.  I am out of the blackness and I am in the light.  I continue to enjoy fairy tales but I admit I still haven’t figured out how to make lemonade.