My Normal

I look normal on the outside.  Walking by me, you would think I was like everyone else.  This weekend at church, walking in with my sunglasses (because I had been crying), favorite boots and jeans (to hopefully make me feel somewhat human), someone said to me, “You always look so glamorous.”  My honest response, “It’s all an act…” as I looked back and then walked toward the auditorium with more tears in my eyes.

Underneath the surface, I am not like everyone.  I have an invisible disease called chronic migraine.  The daily struggles I encounter aren’t what one would consider to be a normal handicap.  

I walk.  I talk.  I laugh.  

I struggle putting sentences together sometimes.  So there are times I may pause or not make sense.

My memory fails me more times than I care to admit.  So I may not remember a conversation or email from the day before.

I have super human sensitivity to light, sound and smell…oh the smells…. 

There are times the sound of crushing a piece of paper or chip bag sounds like dynamite.  There are times when the rushing water from the faucet sounds louder than Niagara Falls. There are times when a pin prick of light in the darkness seems like a super nova.

I often walk around in a fog.  So if I seem ambivalent, it’s not because I don’t care.  It’s because I’m incapable of acknowledging all that is going on around me.

Concentration is a gift I am thankful for on my good days.  If it seems like I’m struggling to listen, it’s because I am struggling and not that what you are saying isn’t important.

I experience some level of head pain daily and sometimes multiple times per day at different levels.  

How do you explain that it feels like an ice pick is coming out of your left eye?  Other than saying that, I’m not sure. It doesn’t burn or throb.  It only exists. 

This disease leaves me exhausted at the end of the day.  If I cancel plans, it’s not because I want to, it’s because I have to.

I hoard candy-canes.  If you see me with one and it’s not Christmas, it’s because the pain is so bad that I’m nauseous.  (Peppermint is a natural anti-nausea remedy)

If I miss work, it’s because I can no longer take the pain another single moment.

I will never “get well”.  My disease is not curable.

I don’t go to the ER because they treat me like a drug addict.

To break a long cycle of pain, I have to sign a waiver for the medication they give me.

I don’t want or expect sympathy.  

I am my worst critic and often blame myself and feel less than worthy. 

I know it’s okay to not be okay.

I pray this disease is not part of my legacy.  

I pray that my daughter, her children and those to come, are not afflicted with this burden.  (Although I know my daughter already suffers from them.)

This is my normal.