I’m still clawing my way out.  I know I can do it.  One day at a time.

Today was a good day.  I walked for an hour.  I ate brunch.

Tomorrow will be another good day.

I am absolutely shattered!  I don’t even know how I will make my journey home.  I am exhausted in every way.  Physically, mentally and emotionally.  I know this is my new norm if I am going to continue working full time, but I am still surprised by it.  I am still surprised at the uncontrollable urge to just close my heavy eyes and sleep.  My option of fighting through and finding energy is gone.  I don’t have the ability to dig deep and find one last scrap of energy to keep me going.  I am now living on that last scrap.  That last scrap is my full energy source.

I do struggle with my new norm.  I have gone from the energizer bunny to the tortoise.  I don’t like being the tortoise.

I met up with a work colleague the other day who has also been through a life changing experience and who also was a natural energizer bunny before their accident.  In his experience he went from hectic everything in life to slow paced everything in life.  When discussing the challenge of coming to terms with a new norm he pointed out a positive that I had missed.  He asked me if I now find myself more considered.   In answering his question it made me realize that yes I do believe I am more considered.  I think my brain is less cluttered.  I believe my mind is less  chaotic as I am not rushing around from here to there and with that comes the benefit of clarity.

So as much as I say I don’t really like my new norm lifestyle I need to keep reminding myself to search for  the silver lining.

I’ve learned that no matter how powerless we feel or how horrible things seem, we can’t give up.  We have to keep going.  Even when it’s scary, even when all of our strength seems gone, we have to keep picking ourselves back up and moving forward.  Because whatever we are battling in the moment, it will pass, and we will make it through.  We’ve made it this far.  We can make it through whatever comes next.

I’m clawing myself back.  I am going to get out of this rabbit hole.

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