Twelve months it has nearly been.

It will be time to wrap this up.

No more posts.

Journey will continue.

I will miss this….

I am a fairytale fool.

I grew up believing in happy ever after.  I grew up believing that there is a pot of gold at the end of the rainbow.  How this belief formed is probably like most children.  I  indulged in one too many Walt Disney movies because I loved the magic.  I loved the thought that there is goodness in everyone and we all get our princess moments.  And this belief has carried through to my adult life.  I no longer believe in fairy godmothers with magic wands however I do think that certain traits I have developed as an adult can be linked back to my early days of eating fairytales for breakfast.

As an adult I have been the ‘what’s next’ person.  The ‘grass must be greener elsewhere’ type.  The ‘ok, great we have done that now there must be something better we can do’.   I am the continuous improvement person on loop.   I must admit this trait has served me well in certain aspects of my life, in particular my career.  It has helped me to stay focused and drive myself to different levels of capability.  But this same trait also has a flip side and that flip side is the chaos it can cause in my personal life.

By believing that there is a pot of gold at the end of the rainbow means that I am constantly looking forward.  How do I get to the end?  How do I get to the happily ever after?  Why aren’t I there yet?  This behavior means that I haven’t embraced the journey I’m not always present, which means I miss what is right in front of me.  I miss appreciating and enjoying what I have in the now.   It also means I tend to not want to stay in one place for long as I like to constantly change up my environment and what I do.  I have also been known to be a bit too spontaneous.   Not only in the little things in life but also in the big things.  But this is something that I have been working on and with the events of the last twelve months this is to be what I see as the greatest lesson and change for me personally.

Twelve months ago I didn’t quite understand that it is all about the journey and not the destination.  All I have ever wanted to do was get to the destination.  I wanted the outcome, just like I do at work.  But things have changed.  I now understand that I will never get to the pot of gold because I will never get to the end of my personal journey.  Tomorrow never comes.  All I have is now.

Being present or living in the now isn’t a new concept.   I recall the famous movie moment of a classroom of boys being encouraged to “seize the day”.  But for me it is a lot easier said than done.  My natural go to has always been to look forward.  Keep moving.  Don’t stop.  And I don’t think that will change entirely.  I will always look forward and I will always keep moving but I will be more inclined to enjoy the present and slow down enough to smell the roses.

I am already doing this and I must say I am enjoying it.  I realize that I can’t treat my life like one big transit lounge.  I am not just passing through the day to get to the next one.  I need to make everyday meaningful.  I need to invest time and love into the right relationships.  I need to remind myself everyday that this isn’t a trial life.  This is my one life.  This is my only chance to live.

I might be trapped in a body that doesn’t work very well, but I am still me.  I owe it to myself and the people around me to be present and be the best version of me that I can possibly be.

I will always be a fairytale fool.

Everyone has a back story.

Everyone has a little bit of darkness in their lives.

I’m trying to out run my shadow.

I’m trying to shed my darkness and reach the light.

I’ve never been more determine.

I’ve never been more scared.

Whatever it takes from me.

Whatever it leaves behind.

I will be there through it all.

I will survive.

Whatever excites you, go do it.

Whatever drains you, stop doing it.

I have been reflecting on my journey.    As I read through my blog posts I can easily map my ups and downs.  And I can also easily pin point my darkest moments.  The moments where I struggled the most to make sense of all that was happening.  The moments where I struggled to understand whether this fight was worth the effort.  The moments in which I doubted myself.

Even today I do find it hard to come to terms with what it all means.  Especially as I don’t have the answers to my future.  I am still living in a world of uncertainty that could come crashing down around me at any moment.  However the difference from my darkest moments to now is that I am more clear with my own capability.  My physical strength hasn’t returned but my self belief has.

I now once again believe that I should continue this fight as my life is worth living.

I once again believe that I should continue this fight as I add value to this world.

What are the numbers associated with my journey so far?

3 surgeries.

50+ hospital visits.

100+ blood tests.

50+ consultants.

4  specialists.

100+ needles.

3 counselors.

2 dieticians.

3 vascular nurses.

50+ nurses.

100+ scripts.

200+ tablets.

80+ injections.

1 Mum.

1 Sister.

2 failed surgeries.

1000+ tears.

2 blood infusions.

50+ weigh-ins.

2 half eaten frozen cheese sandwiches.

We are on the home stretch.  Only a few days away from being 12 months since my diagnosis.  What a strange milestone to have in life…

Is this fight worth fighting?  This is a question I have asked myself more than once over the past twelve months.

My transition into my new ordinary has been a long and hard journey.  There has been many ups and downs.  Lots of tears and tantrums.  Lots of loss and new friendships.  Lots of hope and disappointments.  And throughout this time I have been open about falling into darkness.  I have been open about falling down my rabbit hole.  I have been open about being confused and lost.  I have been open about questioning my life and why I’m here fighting to stay alive.

Fighting to stay alive is a term I use to describe the physical and medical  side of my journey but I also use it as a reference to my day to day life.  I know that I need to listen to my specialists and do whatever it takes to preserve my kidney function.  And I do that.  But my bigger question has been what do I need to do to keep the life I want?  What do I need to do to have a purpose in life that is bigger than me?

I want to work full time.  I want to continue to interact with my family and friends.  I want to live as normal possible until I can’t.  I’m not in denial.  I realise that the time will come when I will be hooked up to a machine three days a week.  I know my whole life will change.  But that moment is not now.  However right now I don’t have a family that wraps their arms around me.   Telling me, begging me to keep fighting because they need me.  And that has been my choice in life so I focus on what does give me purpose.  My work.  But my work also doesn’t wrap its arms around and make me feel loved.  So what are my options?

And we come back full circle.  I start to question what is my purpose?  Why am I fighting so hard to stay in this world?  What do I do next?  How do I make lemonade?

Is it to continue down the path of sharing the kidney awareness message?  Is there also an opportunity to contribute to the mental health arena?  Do I have a book in me?

My head is racing.

I know I need a purpose that is bigger than me?

Just what is it?

Hello Friday

Hello sunshine

Hello itchy eyes

Hello cramps

Hello exhaustion

Hello pyjamas

Hello Mum

Hello warmth and care

Close my eyes

Hello peace

I’d give anything for a peaceful night of sleep….anything…