This is the year I will be stronger, braver, kinder and unstoppable.

This year I will be fierce.

Hard love.

“Fee, you need to get use to this.  Kidney failure isn’t just for Christmas.  You can’t cringe every time we come near you with a needle.”

I am quickly learning that my care isn’t going to be delivered with kid gloves or lollipops.  It is usually delivered with brut force and a side serving of harden up princess.

Their view is that  I need to get use to all the tests.  I need to get use to all the needles.  Because that is my life now.  There is no escaping the stabbing and the poking.  It is all part of my new ordinary.  And according to my nurses the sooner I get use to it, the better off I will be.

So on Monday I did my best to suck it all in.  I walked into the dialysis clinic with confidence.  I eye balled my nurses asking them all how they are and proclaimed in a loud voice that I was well.  Actually I was very well in deed and not nervous at all, I yelled across the room.   Now that was a complete and utter lie.  And I am fairly sure that a few of the nurses saw straight through me but decided to play along as they took pity on me and my feeble attempt at pretending that I was suddenly fine with all that they were about to throw at me.

Within ten minutes I was back in my usual horizontal position with a blood pressure cuff on one arm and needles sticking out of the other one.  So far I was doing well and keeping strong.  It wasn’t  until they were pressing down on my recently cut open veins with a cold and hard ultrasound machine that I broke.  The pain shooting up my left arm was too much to take.  My eyes quickly filled and before I knew it I felt the warm salty drops of my tears rolling down my cheeks.   The pretending game was over.  I had failed my goal of going through an entire hospital visit without any tears or crying.

But it was at that moment that it all started to make sense.  The hard love approach all of a sudden clicked for me when the nurse grabbed my hand, leaned in close and said to me in the softest whisper,

“Fee, well done.  You are brave, we all know you are.  Keep going.”

Oh, now I get it.  As long as I try.  As long as I give it all a go.  As long as I show that  I am there wanting to live and that their efforts and hard work looking after me are worth it, I get their support.  I get their care.  And I like it this way.  It all now makes sense.

Hard love, I get you.

A conversation from deep in the depths of Fiona Stanley Hospital – January 18th 2016:

Doctor:  “Fiona your tests show that your kidney function is at 9%”

Fiona:  “Woohoo that is brilliant.  That’s a relief.  I’m so happy… excellent… thank you”

Doctor:  “Um Fiona this is the worst news I could give you.  Anything under 15% kidney function and you’re in stage five kidney disease.  You do understand that there is no stage six?  You are at 9%.  It can’t get any worse.  You need a transplant.  Fiona, we’ve been through this several times before.  You know this, you know your diagnosis.”

Fiona:  “Oh I understand.  But what is the magic number that will force me back into dialysis?  What percentage of kidney function do I need to get down to before you force me back onto those dreadful machines?”

Doctor:  “To be honest normally anything under 10%.  But with your case it will be 7%.  Once you hit 7% kidney function, and you will, then its straight back  on to the dialysis machines.”

Fiona:  “Excellent.  Then in my view I have 2% of living to do!  I’m going to take that 2% and run.  What should we say see you in a couple of months doc?”

Doctor:  “Ok, very clever Fiona.  But no, I’ll see you every month and you’ll take your medications and injections everyday.  Oh and blood tests every week.”

Fiona.  “Ok deal.  See you in four weeks.  Thanks.”

Doctor:  “Ok.  And Fiona please remember there are no guarantees in life.  That 2% might not even last a month.  Just remember that.”

Fiona:  “Oh believe me I learnt that a long time ago.  I have the t-shirt and a mug.  I know there’s no guarantees in life.”

Ho hum off to hospital I go…

Today’s quote:

At some point you just have to let go of what you thought should happen and live in what is happening.

Two more days and I’ll feel your hold on me again.

Two more days and I’ll be at your mercy.

I’m scared.

I’m tired.

I have to believe I’ll be ok.

I have to believe I’m braver than I think.

I have to believe I can do this.

Three more days and back to the hospital I go.

Three more days and my nightmares become reality.

“Think positive”.  “The mind is powerful”.  “It’s all in the mind”.

We have all heard the quotes and sayings about what the mind can do.  And over the years I have been interested in this topic.  I have not gone down the path of meditation or downward dogs but I do enjoy reading books and blogs about how we can enhance our thinking to improve our interactions, behaviours and relationships in life.

I admit that last year I spent some time in a dark place.  After my surgeries and when I started my dialysis I hit my darkest moments in my kidney journey.  I spiralled down a rabbit hole and I struggled on a daily basis.  I struggled to get out of bed.  I struggled to shower and brush my hair.  I struggled to last a full day of work.  At one point I isolated myself and I didn’t speak to anyone.  I didn’t leave my apartment.  I was suffering physically and mentally and it was the lowest point in my life.

Today I am in a different space.  I’m back at work full time.  I’m interacting on a daily basis with friends, family and work colleagues.  I’m laughing.  I’m smiling.  I’m enjoying being alive.  But I’m also starting to realise just how much of an impact my mental health has on my physical health.

For the past few weeks I haven’t been going to hospital.  For the past few weeks I have been free from visiting the building that represents pain and the death of dreams.   And I have felt light and more alive than I have done in months.  A friend told me the other day that I looked like I had my “sparkle” back, which touched my heart.  And I felt that she was right.  I did feel a bounce in my step.  But today there is a change.  My feet feel like lead and my shoulders are hunched.  My cramps are back and I’m not sleeping.  My skin itches and my back hurts.  My bounce has gone.  My sparkle has disappeared.

Why?  Why such a change?  Is it my mind?  Is my mental state impacting my physical state.

In four more days I have my next renal specialist appointment at the hospital.  In four more days I will sit in the green chair and watch as I’m poked and pricked.  In four more days I will wear a blue gown with no back.  In four more days I will try and lay still while breathing through the pain and cold shocks.  In four more days the reality of my nightmare returns.  This makes me anxious.  This plays on my mind.  I don’t want to go back to the hospital.  I don’t want to be sick.

So today I wonder have my symptoms really returned or is it because I’m getting anxious and emotional about going back to hospital?  Is it because my mind is keeping me up at night that my body is not resting and therefore my symptoms are hitting me hard again?  Is it a  mental vs physical cycle that I find myself stuck in?

Physically I’m doing everything I can to stay alive.  I’m injecting and swallowing medication and exercising on a daily basis.  For my mental state I’m back at work.  I’m interacting daily with friends, family and work colleagues.  I’m writing my blog and I’m enjoying my weekends.  But how do I overcome my anxiety?  How do I overcome my dread of going to the building of needles and sick people?  How do I get my mind to stop racing and remembering the trauma of past?  How do I get my mind to work with me and not against me?

Do I have the ability to overcome my fear?

Does my mind have the power to help me physically and mentally?

Four more days and I’m back in hospital.  My freedom is over.  My nightmare returns.

You judge me on half truths.

You advise me without knowledge.

You repeats words unfairly said.

You hurt me.

I try to ignore without attitude.

I try to explain without an audience.

I try to block the unnecessary pain.

Why do you hurt me?  Can’t you see my healing wounds.  Can’t you see I have no strength to fight back?  Can’t you see I’m not who you think I am.

It hurts.

I opened my note book this morning and I found this quote:

Always remember you are braver than you believe, stronger than you seem and smarter than you think.