All posts by Fiona Barrett

Circus Show Day 246

The time has come for me to write my final post.  I always said I would only blog for a specific timeframe but now that the time has come to an end how do I wrap up the past twelve months?  How do I summarise the most challenging year of my life?  How do I put in words what this journey has meant to me?   So after a week of struggling and procrastinating I have decided that the only way to overcome my block is to not think too much about it.  So here it is, my last post.  My final ramblings and sharing of my inner thoughts about the year that I said goodbye to my kidneys.

Reflecting back over these past twelve months stirs up a mixture of emotions.  I am proud of what I have achieved and also sad for what I have lost.  I am thankful for what I have learnt and surprised by reactions I have faced.  I am overwhelmed by kindness I have experienced and in awe of others who are bravely fighting their own curve ball. There have been so many ups and downs along the way that it is difficult to sit here today and try to summarise it in this last post.  So I won’t.  Instead I will write about my immediate thoughts and key learnings when I think about the year that I have had saying goodbye to my kidneys.

Unconditional love.  I questioned whether it was real over the past twelve months.   In particular I questioned whether someone can still be loved even when they are scrambling for air in their darkest moments.

I can say thanks to my Mum I now know that unconditional love is real.  My Mum has been my constant.  Through it all my Mum has been the one there for me from the start and is still there for me now.  Mum was there wiping my tears when I was diagnosed.  Mum helped me out of my wheelchair and begged me to be brave at my first dialysis session.  Mum held my hand when I was scared and alone in my hospital bed.  Mum cared for me after my surgeries.  Mum kept calling me when everyone else found me too dark to love.  Mum encouraged me to claw my way out when I had fallen down my rabbit hole and was drowning in pain and despair.  Mum has shown me that unconditional love is real and everyone deserves to be loved, even when life turns you ugly.

Thank you Mum.  I know I get down at times and you cry, but I promise that I will keep fighting.  Thank you Mum for believing in me when nobody else could and showing me that life is worth the clawing back.

Judgement.  This hurts.  This hurts a lot.  Judging someone without walking in their shoes is a common act and one that blindsided me on many occasions.

When I was diagnosed with kidney failure I didn’t receive a guide or an instruction booklet on what to do or what not to do.  I navigated my way through my new world of hospitals, needles, doctors and tests the best way I could.  I made decisions with the information I had in front of me and with the advice of the medical team that I had around me.  I had to trust in what I was being told and the direction I was being given.  However, I learnt quickly on this journey that everyone has an opinion, even those without medical training, and that I would have to listen to these opinions and be judged openly.  As a result friendships have been tested and lost.  Trust has been weakened and ultimately my new ordinary looks a lot different to my past.

My lesson on judgement is that it has no place in relationships of value.  It is ugly and I will do all I can to be a better person and not judge those I love.  I might not always agree with their life choices but I will support them and if they fall I will be there to pick them up because to me that is friendship and love.

Thank you to everyone who tried to understand my journey and didn’t pass judgement.  Your support has kept me going and for that I will be forever grateful and loyal.  Thank you.

People are good and kind.  The amount of support that I have received from friends, family and strangers has been overwhelming.  The kindness and generosity that I have experienced has shown me that the human spirit is alive and well. It has shown me that people have big hearts.  It has shown me that people will reach out and give a helping hand to those struggling and in need.

All the kind gestures and acts of kindness have touched my heart and I can’t thank everyone enough for what they have done for me.  I wouldn’t be here today if it wasn’t for my friends, my family, my work colleagues and in particular my team Jess, Lee, Delara and my boss and mentor Brad.  You mean more to me than I can express in words.  You inspire me everyday.  Thank you.

Mental health is the real battle.  For me this journey has been more about my mental health than anything else.  The physical side of my challenge I can  treat with drugs and therapy. However, my mental stamina is what determines whether I get out of bed.

I learnt early on that my specialists and doctors would not be treating me as a whole.  They didn’t think of me as one big system that linked my mental health with my physical health.  It was up to me to look out for both.  It was up to me to make sure that I was finding the right channels of support and the right outlets for nurturing my state of mind.  Everyone is different in this arena and for me I chose to engage with a counsellor and write this blog.  Without doing these two key activities I know that I wouldn’t have found the strength or courage to face everyday.

During my journey I did have very black moments and I was in my rabbit hole for weeks and months but I never lost sight of my way back.  Mental health is so important and the more we talk about it the more we can learn how to deal with it individually and support each other.

Thank you to everyone who had real conversations with me and weren’t afraid to address the big questions and hear the real answers on how I was feeling and doing.  Thank you to everyone who didn’t brush it under the carpet and pretend that they didn’t see through my fake smile and shaky façade.  You are forever my mental heroes.

 

I still can’t believe it has been twelve months since I was told my kidneys were dead and there is so much more I could talk about as I have learnt so much.  I have grown so much.  And I am thankful for so much.  But I will stop my ramblings here.  I am unsure as to what the next year will bring.    But what I do know is that we don’t know what is around the corner and life can change in the blink of an eye.  For this reason  we need to live in the now and embrace everyday.  For this reason I am going to try my best to be present, be the best version of me I can be, shake negativity from around me and appreciate what I have today.

And finally a big thank you to you!  For reading my blog.  For posting your comments.  Your support has  kept me going through my darkest moments.

My journey isn’t over.

The yellow circus has left town.  But it will be back.

Goodbye for now xxxx

Circus Show Day 244

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.

 

Circus Show Day 243

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.

Circus Show Day 242

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.

Circus Show Day 241

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.

Circus Show Day 239

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?