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?