I know you are tired.  I know you are physically and emotionally drained.  But you have to keep going.

Today I read some advice:

Think for yourself.  Trust your own intuition.  Another’s mind isn’t walking your journey, you are.

Making decisions for my future has never been difficult for me.  I’ve always found it quite easy.  In fact I have found it so easy that at times  I have been called impulsive and too carefree.  Moving from one side of the country to another on a whim with nothing more than a suit case has happened more than once in my life.  Most of my “quick” and not so “planned” life changing actions have luckily turned out well and have contributed to the adventurous and interesting life I’ve led.  But over the past few months my urge to throw caution to the wind has diminished.  I feel paralyzed and anxious in making personal decisions.

I’ve been thinking about why at work making decisions hasn’t changed.  At work I can still hold my own and feel confident that I make sound decisions based on the facts at hand.  However in my personal life it’s the complete opposite. Making decisions has almost become impossible.

When thinking about why this is I tend to be landing on one word.  Fear.

I’m fearful of making the wrong decision.   I’m fearful of hurting my friends.  I’m fearful of hurting my family.  I’m fearful that the decisions I make will impact whatever health and mental capacity I have left.  I’m fearful of letting people down.  I’m fearful that people have invested so much time in me, in supporting me through my illness that they might disagree with what I decide and then not support me anymore.  I’m fearful that my decision might be wrong and I’ll die before I can correct it.

I feel crippled by this fear and I try to put off making these life decisions.  But what I have quickly found out is that these decisions don’t go away.  I can’t just ignore them and push them to one side.

So today I will make a decision.  And yes I know some won’t understand.  And yes I know some won’t support.  If I’m honest I don’t truly understand.  I can’t always clearly articulate the thinking.  But I’m following my own intuition.  I’m following my gut.  I might be wrong.  I might fall down again. But I’ll fall because I made my own decision.  It’ll be on me.  And I’ll own in.  I’ll swallow the nasty pill of wrong if I need to and deal with the heart ache.  But at least I know I tried.  I’ll know I gave it my best shot.  I know I gave it my all.

I like to think I’ve grown a lot lately and that I’ve learnt a thing or two.  One thing I think I’ve learnt is that life is complicated.  People are complicated.  Relationships are complicated.  Sometimes it’s easier to give up.  And sometimes its healthier to give up.  But right now I’m in the fighting mood.  I’m going to fight this one out.

I hope you will understand.  And if you can’t, I’m sorry.

Sometimes we have to stop being scared and just go for it.  Either it’ll work or it won’t.

That’s life.

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.