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.

“You will get use to it”

Really?  I will get use to a sharp object being pushed through my skin and into my veins?  Well it has been over five months since my kidneys decided to pack it in and I don’t feel any closer to embracing needles as part of my every day life.

I received some advice the other day.  I was told that I will get over my fear of needles once I experience something that is worse.  Once I have the worse experience I can think about it whenever I am about to have another needle shoved in my arm and then it won’t seem so bad in comparison.

Recently I have had a couple of surgeries and lots of invasive tests but so far nothing can over shadow my fear of the pointy one.

I like the theory….I now just need something even more terrifying to happen to me….

8 more sleeps and back to hospital I go…..

I have learnt a lot in the past few weeks.  Mainly I have learnt that social media is a powerful tool and that the human spirit is alive and well.

A couple of weeks ago I sceptically launched a social media campaign in the quest of finding myself a kidney.  That quest has travelled across the country and beyond.  It has reached 30,000 (yes that is right thirty thousand) people.  Out of that 30,000 I am unsure as to how many actually read my page and took interest in my quest.  However, it has been liked over 600 times and I have received over 100 messages.

Social media is quick.  I didn’t realise how much we have embraced it as a society and how attentive we are to it.    I also didn’t expect the amount of encouragement that I have received from complete strangers.  Prior to launching my page I was feeling a bit lost and flat.  I knew that I needed a kidney transplant but I also knew that I didn’t have anyone close to me that could be a donor.  The journey of dialysis and waiting on a national transplant list, with no guarantee that my lucky number would ever come up was a daunting and rather depressing prospect to face.  However, since launching my page I have felt a new lease on life.  The messages of support and the sharing of stories that I am receiving are inspiring  me to continue on my quest, and I am more determine than ever to be proactive in my future.

I can’t express in words my gratitude to everyone who has responded to my quest.  Through the kind gestures and messages of support I am finding the strength to continue on  my journey – day by day.

Thank you for helping me to stay positive and believe that I have a future worth living.

Ups and downs.  Highs and lows.  Peaks and troughs.

Today I walked alone up a busy street.

Today I walked alone without my can that promises a spray of 1000 peppers.

Today I walked alone past strangers without holding my breath.

Today I walked alone and felt stronger.

Today I walked alone and I didn’t think of you or fear you.

Last year you attacked me in the safety of daylight.

Today I walked alone in the feeling of freedom.

Today was an up.