“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.