It’s been a roller coaster past few weeks.  With my unexpected stay in hospital throwing me back on the tightrope of life.  This latest visit to the white palace of illness has scared me.  It has reminded me that I can’t lose focus.  It has reminded me that life is fragile and I need to stay diligent if I want to keep living it.

Yesterday I was scheduled for my third surgery in 9 months.  But it was cancelled.  I must admit I was relieved as I dread the now all too familiar surgery process.  But my relief has been short lived as I arrived home tonight to another window letter confirming my surgery next Tuesday.

Seven more sleeps.

My most recent stay in hospital has really knocked me around and I have found it quite challenging to bounce back.  I am not sure why.  My body feels a bit broken.  It is on the mend but I am feeling more like an 80 year old than a 40 year old.  It is frustrating.

I use to get nervous when I received a window envelope in the mail as it usually meant that a bill had arrived.  But these days I dread the opening of mail as it usually means a hospital visit or some type of procedure involving needles.  And today was no exception.

I have survived another long stay in hospital and I’ve been getting back on my feet.  Today was actually a good day with me managing nearly a full day in the office.  But tonight I opened a window envelope and there it was in black and white.  My next surgery.  I knew it was going to happen, I just didn’t know when.  But now I do.

I’ve been brought down to my knees.

I’ve fallen down my rabbit hole.

I’ve been pushed way past the point of breaking,

But I can take it.

I’ll be back on my feet.

This is far from over.

You haven’t seen the last of me.

It’s been a tough couple of weeks.  My roller coaster has been racing.  My head has been spinning and I haven’t known which way was up.  But as I’ve done before I will find my grip.  I will open my eyes.

Another stay in hospital was not expected.  But I’ve now realised that I don’t know what’s around the corner with this disease.  I’ve come to expect the unexpected.  I’m getting use to the lack of answers and the uncertainty.

But this time I want to be more proactive with my mental health.  I want to try and distract myself.  I’m thinking classes.  Painting.  Singing.  Cooking.  Writing.  Dancing.  Sculpting.

What else can I do?

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.