There is a special place in my heart for the ones that were with me at my lowest and still loved me when I wasn’t very lovable.

I did it!  I did enough.  I changed my life and now I am free.  Not forever but at least for the next four months.  For the next four months I won’t be poked, prodded or pricked.  For the next four months I won’t be forced to eat frozen cheese sandwiches or drink grey warm tea through a straw.  For the next four months I won’t need to visit the building of death waiting for my number to be called.  For the next four months I don’t need to be hand held or watched over.

The last words that my specialist said to me yesterday were “keep doing what you are doing and stay away from this place”.  I don’t need to be told twice.  I raced out of there with a grin from ear to ear and a new spring in my step.  I felt proud of myself for achieving this huge health milestone.  I felt proud to think about my journey of the past eight months.

Eight months ago I was diagnosed with irreversible kidney failure.  I was told that my life as I knew was over.  I was told that I would now be dependent on a machine to keep me alive and that I would need a kidney transplant.  This hasn’t changed.  My future still holds that ahead for me, however I don’t need them today.  And I don’t need them for the next four months.  So I am free to live hospital free.

Getting here has been hard.  I have changed in every way.  I see the world differently.  I see the people around me differently.  But most importantly I see myself differently and I act differently.  I have swapped late nights for pj’s and heat packs.  I have swapped hectic weekends with sleeping and Netflix.  I have swapped sweaty body thumping workouts for casual walks along the beach with a cup of tea.  I don’t engage in negativity, I cherish unconditional love and I have let go of anger and resentment.  Friendship has been found in a small few and my new world could be described as quaint and simple.  I still have passion however with my energy being limited it is focused and clearly directed.

I know my life will continue to change and that I will be continually challenged by my deteriorating health, but I have four months of freedom and I am going to take it and enjoy it.

8 months later have I done enough? Have I changed and sacrificed enough?

My life is different.  I’m different.  I’ve tried.  But are you going to reward me?  Are you going to tell me it’s enough.

Please reward me.

Please tell me I’m stable.

Please stop holding my hand and watching over me.

Let me be free.  Let me be free of weekly bloods.  Let me be free of monthly invasions.  Let me free of my blackness.

I need this to claw my way out of my rabbit hole.  I need this so I can see the light and claw my way out.

Have I done enough…

Back to the greyness.

Back to the white walls and smell that makes my nose itch.

Back to the plastic smiles and cold hands.

Here I am.  Please be gentle.  There is a person attached to that arm.

Time pass quickly.

Shut my eyes and go to my happy place…

Clawing my way out of the rabbit hole.

One foot in front of the other.

Dance lessons.

I fell back down the rabbit hole.  It’s dark.  It’s cold.  And it’s lonely.  But this time it’s different.  It’s familiar and I wanted to stay.  I didn’t fight it.  I let it wrap it’s blackness around me and engulf me in sadness and hopelessness.  I accepted it and I have lost count of how long I have been down here.

Friday an unexpected light cut through my darkness.  It was only for a split second, but I saw it.  And it woke me up.  It woke me up and now I want more.  I want to claw my way back out of this hole and live again.  Enjoy life again.

Donna, my cousin, you were the light.  I watched as you promised to give meaning to the word ‘love’.  I watched as you promised your journey to another.  You reminded me why we are here.  You reminded me that it’s not what’s in your pocket but what’s in your heart that’s important.  You reminded me that despite everything that life throws at us we can continue to grow.  We can continue to love.  We can continue to be compassionate and forgiving to ourselves and others.

Thank you for sharing your special day with me and thank you for reminding me that I can’t roll over in the dark.  Thank you for reminding me that I can’t live in the rabbit hole.

Today I start clawing back.  I know I can do it again.  I know I can get back out into the light and be a better version of me.  I will shed all that is negative and I will shed all that has been weighing me down.

I will be ok.

I will find my way.

A simple and easy kidney check – now I wish I knew about that before my kidneys died…

http://kidney.org.au/your-kidneys/prevent/check-my-kidneys

I know you are tired.  I know you are physically and emotionally drained.  But you have to keep going.

Today I read some advice:

Think for yourself.  Trust your own intuition.  Another’s mind isn’t walking your journey, you are.

Making decisions for my future has never been difficult for me.  I’ve always found it quite easy.  In fact I have found it so easy that at times  I have been called impulsive and too carefree.  Moving from one side of the country to another on a whim with nothing more than a suit case has happened more than once in my life.  Most of my “quick” and not so “planned” life changing actions have luckily turned out well and have contributed to the adventurous and interesting life I’ve led.  But over the past few months my urge to throw caution to the wind has diminished.  I feel paralyzed and anxious in making personal decisions.

I’ve been thinking about why at work making decisions hasn’t changed.  At work I can still hold my own and feel confident that I make sound decisions based on the facts at hand.  However in my personal life it’s the complete opposite. Making decisions has almost become impossible.

When thinking about why this is I tend to be landing on one word.  Fear.

I’m fearful of making the wrong decision.   I’m fearful of hurting my friends.  I’m fearful of hurting my family.  I’m fearful that the decisions I make will impact whatever health and mental capacity I have left.  I’m fearful of letting people down.  I’m fearful that people have invested so much time in me, in supporting me through my illness that they might disagree with what I decide and then not support me anymore.  I’m fearful that my decision might be wrong and I’ll die before I can correct it.

I feel crippled by this fear and I try to put off making these life decisions.  But what I have quickly found out is that these decisions don’t go away.  I can’t just ignore them and push them to one side.

So today I will make a decision.  And yes I know some won’t understand.  And yes I know some won’t support.  If I’m honest I don’t truly understand.  I can’t always clearly articulate the thinking.  But I’m following my own intuition.  I’m following my gut.  I might be wrong.  I might fall down again. But I’ll fall because I made my own decision.  It’ll be on me.  And I’ll own in.  I’ll swallow the nasty pill of wrong if I need to and deal with the heart ache.  But at least I know I tried.  I’ll know I gave it my best shot.  I know I gave it my all.

I like to think I’ve grown a lot lately and that I’ve learnt a thing or two.  One thing I think I’ve learnt is that life is complicated.  People are complicated.  Relationships are complicated.  Sometimes it’s easier to give up.  And sometimes its healthier to give up.  But right now I’m in the fighting mood.  I’m going to fight this one out.

I hope you will understand.  And if you can’t, I’m sorry.

Sometimes we have to stop being scared and just go for it.  Either it’ll work or it won’t.

That’s life.