I need to remember that I should never apologise for showing emotion or being sensitive.  It is a sign that I have a heart and I’m not afraid to let other people see it.  Showing my emotions is a sign of strength.

This is my new ordinary.  Restless nights. Scratchy eyes.  Yawns before lunch.  Weekly needles.

This is my new world.

Today is different from yesterday.  And tomorrow will be different from today.  My body isn’t a consistent machine.  It doesn’t have a standard daily level of pains.  It doesn’t have a quota of cramps per day.  It doesn’t tell me how many hours of sleep will make the hurt go away.

Have I accepted this new world?   Have I worked through my emotional roadblocks to finally accept my path behind and my path forward?  I don’t know.  Am I dealing well with who I am today?  I don’t know.  It depends on who you are asking.  If you ask my Mum she will probably tell you how worried she is about me.  She is worried that I don’t rest enough.  She thinks I should work less.  If you ask my work colleagues they will probably tell you I am doing great.  They will tell you that I work when I can and that I am now good at going home when I need to.  If you ask my specialist they will tell you that I am going strong and that I should keep going and not stop anything until I have to.

If you ask me I will tell you that I am doing really well.  I am taking one day at a time.  I will share with you my feelings of being lucky to be alive.  I will explain that I understand that my current situation could be a lot worst.  I will proclaim with as much vigor as I can muster “I am loving life”.

If you ask my inner voice, my voice of truth, it would tell you that every day is a struggle.  That for the majority of my waking hours I just want to be laying down.  Not talking.  Not moving.  Not thinking.  My inner voice will tell you that emotionally I am at my limit.  My inner voice will express how hard my relationships are.  And that  I am drained.  I am drained and just want to cry – a lot.

My inner voice will tell you that physically my body is a stranger.  And that I don’t know how to bring it back to life.  My legs are numb.  My arms are weak.  My skin itches from head to toe.  My eyes are on fire.  Every movement feels like a fight against gravity.  My inner voice won’t hide that my body doesn’t belong to me anymore.  It has been surrendered to the weak and the old.

My inner voice will tell you that I feel guilty.  I feel guilty everyday for not being stronger.  For not being better.  For not being able to paint a smile on my face and just get on with life.  Because isn’t that what I should be doing?  My diagnosis was over six months ago.  It’s old news.  Aren’t I better by now?

My inner voice will share the truth.  My inner voice will be raw and harsh.

My inner voice will scream “This is not what I ordered in life!  My new ordinary is not my chosen path”.

What do you need to hear?

What voice can you deal with?

Time to figure yourself out.  Time to realize what it is you want.  Time to forget.  Time to take risks, to love, to be afraid.  Take time before it’s too late.

I’ve changed.

Water is now my drink of choice.  Rainy days suit me better.  Weekends are for sleeping.  I have a super artery.  My second home is a hospital. I read medical journals.  Work is an outing.  I cry a lot.  Half seven is an acceptable bed time.  I know what restless legs are.  I think about death a lot.  I have a bucket list.  I can’t remember what it is like to live without pain.  I think about life a lot.  I feel slightly insane.  My head is foggy. Massages are my gold.  I think about the organ trade black market.  My favourite outfit is my pyjamas.  I’m old.  Laughing is a treat.  I feel guilty a lot. I’m easily over whelmed.

I’ve changed.   But I am also the same.

Why do you judge me?

I’ve changed.  But how could I not?

Why do you escape me at night?

Why do you haunt me by day?

Without you limbs are heavy, mind is foggy.

Without you emotions are heightened, pains are deeper.

How long can you run?

How long can I chase?

You use to be my friend.

You use to bring me fairy tales and joy.

My body craves you.

My mind curses you.

It shouldn’t be this hard.

It shouldn’t dictate all.

I’m tired.

I’m hurting.

Please come back to me.

Please be my friend again.

1am.  2am.

4am.

Sleep.

A strong person is not the one that doesn’t cry.

A strong person is the one who cries and sheds tears for a moment, then gets up and fights again.

Tough day.

These are the days when I want to just curl up in my bed and hide from the world.

Everything hurts.

Everything is cramping.

I feel nauseous and exhausted.

Today I am being reminded that my kidneys are still capable of kicking my arse.

The past few days I have been reminded of what is important in life.

The past few days I have been reminded of why I keep fighting to stay alive.

On Friday I shared in a very special day.  In front of friends and family my close friend proclaimed her love and commitment to her partner of twelve years.  They looked gorgeous.  The vows were mascara destroying and the reception was absolutely stunning with fabulous food and the perfect balance of mood lighting and flowers.  It was everything that fairy tales are made of.

But what struck me most on the day was the great memories we were creating.  It will be very rare, and maybe never again, that us as a group of people will come together to celebrate and interact with eachother.  We were from the past and present.  We were from Perth and from overseas.  We were friends and we were family.   There was a broad mix of us all coming together for one thing and that was to share in our friends joy of getting married.

It was a day completely devoted to celebrating love and commitment.   It was a one off.  A special occasion to be cherished and captured in our hearts forever.

These are the moments that we think about in time.

These are the moments that make being alive worth the fight.

Thank you my friend for including me in your very special day.  Thank you my friend for reminding me of the precious moments that life can still hold.

You were a beautiful bride and you are a beautiful friend.

Sometimes, you have to get knocked down lower than you have ever been to stand back up taller than you ever were.

I hate you for making me feel weak.

I hate you for making me feel guilty.

I hate you for the pains.

I hate you for changing my path.

I hate you for all the things I now can’t do.

I hate you for making me hate.

You are me.

Why didn’t I do the checks?

Why didn’t I know?

Let go.  Move forward.  Be positive.

Easier said than done.