Monthly Archives: June 2016

Circus Show Day 192

They call you my lifeline.

They tell me to protect you at all costs.  No watches.  No bracelets.  No handbag straps or shopping bags.  No needles.  No contact sport and blood pressure tests right arm only.

I followed the instructions.  I looked after you and I checked you daily.

For a while you were  strong.  I could feel your thrill with the lightest touch.

But something has changed.  You are hard to find.  You are weak.

What did I do wrong?

They say I will need you.

I don’t want to need you.  Not now.  Not ever.  So I am not going to fix you.  I am not going to have more surgery.

Today you are not my lifeline.

Circus Show Day 191

You fall, you rise, you make mistakes, you live, you learn.  You’re human, not perfect.  You’ve been hurt but you’re alive.  Think of what a special priviledge it is to be alive – to think, to breathe, to chase the things you love.  Sometimes there is sadness in our journey.  But we must keep keep putting one foot in front of the other even when hurt, for we will never know what is waiting for us just around the bend.

Ritu Chatourey

Circus Show Day 190

I don’t know how to be me.

My new skin is baggy.  It doesn’t fit me.  I want to jump out of it and go back to my old skin.  I want to go back to the old me.

I have crawled out of the rabbit hole.  But now at the top the light is too bright.  The space is too open.  I had grown strangely fond of the dark and confined space.  Can I slip back in without anyone noticing?  Can I survive living in the shadows?

My confidence has gone.  I don’t how to be…me.  I use to laugh.  I use to know what to say.  Now I bumble.  I stumble.

I was told the other day that I over explain.  Perhaps I do.  Perhaps I do because I am still trying to make sense of it myself.  Perhaps I do because I don’t want to leave room for judgement.  I have been judged and I have been hurt.  By those that I called close.  I now protect.

I am tired of thinking.  I am tired of trying to fit in.  How do you make it look easy?  How do you glide through life?  I watch people evolve.  I watch people achieve.  But I trip over my own skin.

I know who I use to be.  I know what I use to like doing.  But that is gone.  It is now all different.  How do I live in my new ordinary?

Circus Show Day 189

I was 12 years old the first time I saw a dead body.  It was my nonno (grandfather).  I remember two things.  I remember how small he looked inside the big red wood coffin and I remember his eyebrows.  My nonno died of cancer and he had lost his eyebrows through his treatments.  So when I saw that someone had painted on some eyebrows after he had died I was horrified.

Since then I have unfortunately been to several more funerals.  And from these experiences I realise that I don’t want the traditional funeral with all its rituals.  It’s just not for me.  But I know that when a loved one dies we need to come together in some form so that we can support eachother in our mourning and also take time out to reflect and celebrate the life that was lived.

This might sound all a bit morbid but when I was writing my living will I thought a lot about my funeral.  So I’ve decided that I want my friends and family to remember me and celebrate my life in a slightly different way.  I wish for them to go to my favourite restaurant and enjoy themselves while eating my favourite food and drinking my favourite wine.  I believe this is the best way to remember me.  Not by sitting in a stuffy funeral parlour but by doing something that has brought me so much joy over my life.  By doing something that I love doing, laughing and chatting while devouring delicate seafood swished down with French champagne.

Circus Show a Day 188

Congratulations RLS you are tonight’s winner! It is an impressive win against strong competition.  We threw everything we had at you but you smashed through them all with flying colours.

Good effort and special mention goes to the following competitors who didn’t stand a chance against RLS:

  • Lavendar essential oil
  • Herbal heat pack
  • Hot shower
  • Leg massage
  • De-stress lavendar and sage eye mask
  • Fresh sheets
  • Luxury pillows

RLS we are in awe of your winning abilities….

Circus Show Day 187

It’s called RLS.  Restless Legs Syndrome.  Approximately 15% of adults suffer from it and it’s one of the symptoms of kidney failure.

Restless Legs Syndrome is pretty much exactly that.  The legs take on a mind of their own and they keep moving.  The syndrome comes in various forms with some people having a burning sensation or ache which can get worse when trying to sleep.  The recommended treatment is massage, hot baths, exercise and lots of sleep.  Which is ironic as my restless legs stop me from sleeping.  Just like tonight.

Tonight my RLS is in a very significant burning form and for me right now RSL stands for “all I want to do is Rip off my Legs Syndrome….”

Circus Show Day 184

My Dad once told me that not matter what he would always love me and he would always be there for me supporting me through anything as long as I didn’t lie or hurt anyone.  But if I lied and if my actions had the intent of hurting someone then he would still love me but he wouldn’t support me.

Looking back over my adult life I believe I have carried the approach my Dad had with me into my own personal life and relationships.  I try my hardest to be the friend that will be by your side no matter what.  I might not always agree with your actions or decisions but I will support you and I will be there no questions asked to pick up the pieces if needed.  I believe it is your life to live and nobody knows what it is like to walk in your shoes.  My job as a friend is to be your support through thick and thin, ups and downs.

However, this hasn’t always worked out in return for me.  Especially over the past eight months I have learnt a lot about relationships.  I have learnt that I can’t be as open or honest as I would like to be with all my friends.  Some friends can deal with an honest answer when they ask “how are you?” but others need you to put on a smile and say “yeah good”.

So reflecting back on what my Dad once told me I think some people around me probably still love me as a friend, but they don’t know how to support me through this.  Or they need to see me progress and get better, my roller coaster journey might just be a bit too much to handle.  And I understand.

Being ill is my burden to carry.  And I am carrying it the best I can.