Friday night.  Friday night use to be my favourite night of the week.  It symbolised the end of the working week and the promise of freedom.  Two days of freedom to be whoever you wanted to be.  Two days of freedom to do whatever you wanted to do.

Tonight is Friday night.  Friday night in my new ordinary symbolises the loss of freedom.  It symbolises the promise of needles, tubes and hospital.  It is the night before my next dialysis  session.  It is the night before my nightmare is once again proved to be reality.

My dialysis schedule includes every Saturday.  Starting tomorrow I will be spending my Saturdays hooked up to my magic machine.  Saturdays will become  one of my fighting days.  Saturdays will become one of my big girl pants day.

Tonight I’m still scared of tomorrow.  I now know the process and what to expect, but I’m not sure whether that is better or worse.  What I do know is that I don’t choose this life.  This life will not grow on me.  Time will not encourage fondness.  Attachment will not creep in.  I will not accept this life as forever.  I want to keep fighting this existence and keep fighting for me.

Living on a machine is temporary.  My promise of freedom is not lost.  I will follow the rules.  I will do the tests.  I will listen and trust.  And I believe that one day I will win the lottery and I will be ready.  I will be ready for the prize.

Friday night is not my favourite night of the week.  Not now.  But I believe it will again be a night of promise… one day.

I have retreated.

I have retreated to a place of warmth and care.  A place where I can let my gaurd down and not be judged.  A place where unconditional love wraps it’s arms around me and holds me tight.

I can feel myself healing.  I can feel my shoulders lower and my stomach settle .  I can feel my mind clear and my heart slow.

Tomorrow came and tomorrow went.  Now we are spinning at full pace on the merry-go-round and there is no stopping.  There is no getting off.

But I’m ok. I’ll be ok. I wasn’t ready for the ride but I was prepared.

Two more sleeps and I am back on my magic machine, my life saving machine.

Until then I’m retreating.

“I can’t breathe. I don’t want to do this.  It’s all too much.  Enough now”

I wanted to scream.  I wanted to let them all know that it was enough.  That I wanted to stay in bed.  My arm was still sore from surgery and I couldn’t take more pain.  I couldn’t take more needles.  I couldn’t take more poking and prodding.  I just couldn’t take anymore of anything.

Two surgeries in less than two weeks and now my first dialysis session.  I felt overwhelmed. It was all weighing down on me.  I felt as though I was drowning.

But I didn’t scream.  I didn’t cry.  I held back the tears and I kept quiet.

As I tried to pull the covers over me and hide away from it all I saw my Mum.  She was holding onto the end of my hospital bed as if she needed the support.  She too looked weighed down.  She too had tears in her eyes and from where I lay I could see and feel her hurt.  Her hurt for her daughter.  Her hurt for what I’ve already been through and what she could see still ahead of me.

I had no choice.  I had no escape.  I couldn’t hide.

Twenty minutes later I was climbing out of my wheelchair and into another hospital bed.  But this hospital bed was different.  This hospital bed was part of my new ordinary.  It was my dialysis bed.

As I crawled into my new bed in the dialysis ward all I could see was my magic machine.  It stood as tall as me and as wide as a door.  It dominated the room and in some strange way it looked strong and capable.  Which was a good thing as my life now depended on this machine.  After a brief introduction to my magic machine I was hooked up and ready to go.  It was at this point that I couldn’t hold back anymore.  I couldn’t hold back my tears.  Tears of uncertainty and fear streamed down face.  What was this going to feel like?  Will it hurt?  Will I be able to cope?  Will I be able to cope with seeing my blood leave my body through the clear plastic tubes and into the machine?  But my tears didn’t last long as before I knew it we had started.

As the machine started I watched the tubes turn from clear to red.  It was weird watching my blood leave my chest catheter and slowly move through the tubes across my bed and into the machine.  As I watched this life saving process I was unsure as to whether I could physically feel the moving of blood through my body.  It didn’t hurt but was there a slight cold feeling as my blood drained away from my chest through the tubes?  Was I imagining it or was it real?  Hours later I still can’t decide whether the cold feeling was in my head or not.  However,  I do know that during the session I did end up having real feelings of dizziness and nausea.

After two hours of blood cycling, tears and body twitches I was done.  My first dialysis session was over.  i had done it! Finally after  all the sleepless nights.  After all the tears.  After all the words of denial.  After all the anxious waiting and procrastination I had finally completed my first dialysis session.

Was it daunting?  Yes.  Was it painful?  No.  Do I want to do it again?  No.

Dialysis is a life saving activity.  It is an activity that is now at the core of my existence and is an unavoidable part of my life.  But I don’t like it.  And it will take time for me to accept it. It will take lots of time for me to accept it.

These past two weeks of surgeries, tests and dialysis has pushed me to my limits.  It has been without doubt the biggest challenge of my life.  And at times I felt as though I was walking a tight rope without a safety net.  I have been doing my best to balance all aspects of my life and with every step I had the pressure and threat of losing my footing and falling.  Falling down my rabbit hole of sickness and despair.  Never to return to the world I once knew and loved.

And in a way I have fallen down the rabbit hole.  My world has changed.  And changed forever.  At this point in time I don’t believe I have fully acknowledged or come to terms with these changes and the new ordinary that is forming around me.  I am home recovering but the familiar surroundings and comfort of home hasn’t wrapped me in warmth or filled me with calm.  I don’t feel at ease and I am itchy and uncomfortable in my own skin.   I feel on edge.

Despite how I’m feeling I am still moving forward.  I am still fighting the battle with all I’ve got.  In the past two weeks I have survived two surgeries and completed my first dialysis session.  But it’s more than that.  I have learnt so much.  I have jumped mental and personal hurdles that outweigh the physical aspect of this challenge and I feel as though a lot has been achieved in a small amount of time.

I do feel  different.  And I do feel overwhelmed.  But I also feel proud of the momentum and the amount of progress we have made in forming my new ordinary.

I’m alive!

Today was a big day in my new ordinary.  I had stitches removed from my neck and my dialysis tubes were flushed, cleaned and redressed.  But the main event of the day was my operation to form a fistula in my left arm.

This procedure joined my vein and artery together and formed a super artery.  This super artery is the fistula.  This is what my needles will be jabbed into every time I have dialysis so that I can be hooked up to my blood draining magic machine.

It will take up to three months for my fistula to heal and be ready for dialysis.  So in the meantime we will use my neck and chest tubes that I had inserted during surgery last week for dialysis.

My body has been through so much trauma lately.  I’m impressed with how my body is continuing to put one foot in front of the other.  Yes it has failed me in my life of normality but it is putting everything it’s got left in our chase for life.  And the next step in our chase for life is dialysis.

I start dialysis tomorrow.  At 3pm tomorrow for the first time I will be hooked up to my magic blood machine.  My magic blood machine will keep me alive.  It will take all of my blood out of my body.  It will filter my blood and then pump it all back into me.  This will take about 6 hours.  It’s my blood cleaning magic machine.  My machine of life.

As I lay here, listening to the man in cubicle 84 snore for Australia, tomorrow consumes my thoughts.  I’m anxious about my first time on my magic machine.  What will it feel like?  Will it hurt?  Will I feel better?  Will I cope with watching tubes of blood swirling around me?

For me it is daunting and disappointing that my life will depend on a machine.  Without the magic dialysis machine I would die.  Therefore once I start on this machine I can’t stop.  I cant stop until I get a transplant. In this life changing situation I feel a sense of loss.  A loss of control over my body and life.  A loss of independence and decision making ability.  I feel trapped without any options and feel as though I am at the mercy of my disease.

Tonight obviously I’m feeling the lightest I felt in a long time, thanks to hospital drugs.  The one positive about being in this place.  I am trying my best to take one day at a time and am working hard to fight this battle.  It is a tough and draining battle and some days I feel more positive than others.  I find this evident when I read back through my blog.  I’m up and down.  But I do understand that this is the nature of such a life changing journey.  It’s a roller coaster journey.  And one that I’m sure will continue in this topsy turvy fashion.  It’s going to be a long ride.

I survived surgery number 2.

Here we go again!

Waiting.  Surgery number 2.

I’m scared. I don’t want to do this. Don’t call my name.

I want to run.

Please hold my hand please.

Wish me luck.