The past few days I have been reminded of what is important in life.

The past few days I have been reminded of why I keep fighting to stay alive.

On Friday I shared in a very special day.  In front of friends and family my close friend proclaimed her love and commitment to her partner of twelve years.  They looked gorgeous.  The vows were mascara destroying and the reception was absolutely stunning with fabulous food and the perfect balance of mood lighting and flowers.  It was everything that fairy tales are made of.

But what struck me most on the day was the great memories we were creating.  It will be very rare, and maybe never again, that us as a group of people will come together to celebrate and interact with eachother.  We were from the past and present.  We were from Perth and from overseas.  We were friends and we were family.   There was a broad mix of us all coming together for one thing and that was to share in our friends joy of getting married.

It was a day completely devoted to celebrating love and commitment.   It was a one off.  A special occasion to be cherished and captured in our hearts forever.

These are the moments that we think about in time.

These are the moments that make being alive worth the fight.

Thank you my friend for including me in your very special day.  Thank you my friend for reminding me of the precious moments that life can still hold.

You were a beautiful bride and you are a beautiful friend.

Sometimes, you have to get knocked down lower than you have ever been to stand back up taller than you ever were.

I hate you for making me feel weak.

I hate you for making me feel guilty.

I hate you for the pains.

I hate you for changing my path.

I hate you for all the things I now can’t do.

I hate you for making me hate.

You are me.

Why didn’t I do the checks?

Why didn’t I know?

Let go.  Move forward.  Be positive.

Easier said than done.

They tell me not to worry. As long as there is a buzz we are ok.  But your buzz is weak and different to what it was.  So I do worry.

I’m checking on you everyday.

I need you, so please hang in there.

Are you ok?

You seem weak.  You have lost your buzz.

I am worried about you.

I also found your lump.

I’ll take you to the hospital.  I’ll find out what’s hurting you.

I’ll look after you my super artery.

You are my lifeline.  I promise you will be ok.

On my good days my back and neck hurt, my eyes scratch, I’m nauseous and my feet cramp.  On my bad days……well they are just BAD.

For fives days a week I choose to push on regardless of the good or the bad  and go to work.  I go to work as I want to try and live as normal as possible.  I go to work because I love what I do.  I love the inspirational people I work with.  I love trying to make a difference.  I love learning.  I love having a sense of purpose.  But most of all I love that some days I get so busy and so engrossed in what I’m doing that I actually forget whether I’m having a good day or a bad day.  I actually forget, even if it is just for a fleeting moment, that my kidneys have failed.  I actually forget that I am fighting to stay alive.

My first job was at a cafe that specialised in hot fudge sundaes and homemade rocky road ice cream.  At fifteen years of age I looked forward to my Friday and Saturday nights at the small corner shop with pink curtains and plastic white chairs.  I had fun working, and yes the fact that I had a never ending supply of marshmallows and raspberry lollies definitely helped.

My love for my work has continued into my adult career.  I am currently in a role that makes me want to get out of bed in the morning.  This isn’t because my role is glamorous or prestigious.  And I’m not working for a sexy innovative start up that is going to revolutionise the world. But in my opinion what I have right now is so much more than all of that put together.  In my current role I work alongside amazing people that I trust, respect and learn from everyday.  We are passionate about what we do and I feel apart of something that is bigger than me.  I am a part of a team that cares and is striving everyday for the greater good.

In addition to being in an awesome team a few of my work colleagues have crossed the boundary into friendship.  We chat, laugh and share our weekend stories.  We do lunch and birthday shopping together.  We even support each other outside of work.  For me they have become a critical support unit that get me through my BAD days and they are usually the first people I turn to for advice and to share my hospital stories. They have become more than just work colleagues and are irreplaceable to me.

Saying all this choosing to work full time means I also choose a limited weekend.  By Thursday my body feels as though I’ve been hit by a truck and I’m so exhausted I could sleep standing up on a bus.  That’s my sacrifice.  That’s my trade off.  I can work five days but then every night I’m  asleep by the time the sun goes down and Im lucky to manage a two hour pyjama free window on the weekend.  I’ve literally turned into a sleeping machine.

I think about reducing my hours.  I even talk about cutting back with friends.  But I know I would just be swapping that working day for couch time.  I wouldn’t have a purpose to get out of my pyjamas and I would become that sick person who only works part time.  Yes there is a good argument that perhaps if I worked less I wouldn’t be as tired and perhaps I could do  more “me” things.  But the truth is I love my current role.  Ok not always the role itself but I have a boss and team that I learn from everyday.  I enjoy their company, I believe in what we do and I’m inspired by them and our vision.  I also laugh and cry with them.  I share my ups and downs with them.  We share five days.

I know that nothing lasts forever so for now I want to hang onto my five days while I can.  I don’t know how long I’ll be able to battle it out but right now that’s what I choose.

I choose work over couch.

I went on the journey without you.  But I missed you.

Without you the journey was hard.  Without you my digging was deep.  Without you every push was painful.  Without you every hill was a mountain.

But I can’t wait for your return.  I can’t lay in the hope that you will once be again my friend.  I’ve lost you but I can’t lose me.  I need to get up and keep going.

Today I pushed the pedal and I rode without you.  I missed you but I’ll do it again and again.

Energy you have left me but I will keep going.  I will keep moving.

Where are you?  Today I can’t find you.  Are you under my bed?  Are you in my cupboard?  Are you mixed in a pill?

Today I lay without you.

Today will be a long day.  A day of struggle.  A day of loneliness.

I wish I knew how to get a consistent you. I wish I knew how to keep you?

I’m sorry I took you for granted.  I’m sorry I didn’t understand you and nurture you.

Now I crave for you.  I need you.

ENERGY where are you

I live in two worlds.

In my hospital world I don’t have a name.  I am a disease.  An illness.  People refer to me as “renal” or “out”.  Out is a term they give to people who are sick and come to the hospital for treatment.  In my case I go to the dialysis clinic which is based in the hospital.  If I was staying in the hospital ward then I would be referred to as “in”.  In this hospital world I feel sick.  I know that I am sick.  I can’t hide from it.  If I wasn’t sick then I wouldn’t be apart of this world.  There is no denial in this world.

In my hospital world my main interactions are with people in uniform with checklists.  Our conversations are questions.  We focus on  my pee.  The colour of my pee.  How frequently I pee and whether I have fluid, which is most likely pee, blowing up my ankles.    Personal space is not highly regarded during these interactions with touching, poking and prodding being an accepted part of the dance between doctor and patient.

In my hospital world I am surrounded by yellow people with missing limbs.  I don’t know their names and they don’t know mine.  There is just an unspoken acknowledgement that we are bound by the same illness.  We may be at different stages of our decline, but we are all fighting in our own silence to stay alive.

In my ordinary world I am called Fee.  In this world I have a purpose.  I have a job that I love as I get to work with amazing people everyday.  I am constantly learning and growing and I feel apart of something that is bigger than myself.

In my ordinary world I am a daughter, a sister, an aunty and a friend.  I am surrounded by people that I love and respect.  I enjoy going to the movies, having a  good belly laugh and eating chocolate for breakfast.  In this world I am not a disease.  I am Fee who sometimes has a bad day.  I am Fee who sometimes has to go to hospital.   In this world people don’t talk to me about my pee.  In this world people respect my personal space.  In this world I don’t fear needles and scalpels.  In this world my illness is a part of my life, but it isn’t my life.

I like living in two different worlds.  I don’t want the two worlds to merge, to blend.  I want them to stay separate.  I want to be Fee.

My Mum isn’t a spring chicken.  She has reached the age where death is incorporated into her everyday dialogue.  These days when I catch up with her I am unable to avoid the dreaded rundown of who is sick and who has died.  These stories are usually about people that I have never met and a large portion she has never met either.  But they all have a back story that she feels the need to share and in her own way she is delivering a life message with every tradegy told.

And this weekend was no exception.  This week’s story of death was about a friend who hadn’t seen her neighbour for a while and last week bumped into him in the street.  She asked him how he was and he replied that he was on his way to the pharmacy as he wasn’t feeling very well.  Apparently he collapsed in the pharmacy and died.  He was 41 years old.

Normally I would thank Mum for the depressing news and tease her for bringing sunshine into my day.  But this time her story brought tears to my eyes.  One minute this man was walking to his local pharmacy and the next minute he was fighting for his life, and ultimately lost.

Thanks Mum for the not so subtle reminder that life is precious.

We are here now.  Live in the present.  Enjoy every minute.