Monday, January 11, 2010

16 Years...

I was diagnosed in 1994.     It sounds easy, but it wasn't.      I literally woke up one morning and my whole life had changed.     I thought it was the flu.     The doctor said the flu test was negative.      Everything hurt.   My muscles, my bones, my teeth, my toenails.... even my hair.     It went on for days.  Weeks.   Months.     We saw doctor after doctor after doctor.   

It wasn't just the pain.    It was the exhaustion.   I was tired when I woke up.    Going to the grocery store meant having to lay down for a two hour nap.     I barely had the energy to get the clothes from the dryer to the couch much less fold them.

Finally, we saw a doctor that diagnosed me.    Fibromyalgia.     Those were the early days when the disease was so new.     So little was known.  

I will never forget the doctor's compassionate words, "It won't kill you, but it will make you wish you were dead."      I didn't think I could live the rest of my life like this.      I couldn't imagine waking up the rest of my life in this kind of pain and this kind of exhaustion.

I was wrong.    It has been 16 years and not only am I living with fibromyalgia, but I am controlling it instead of it controlling me.      Do I hurt?    Every single day.     Am I tired?    24 hours a day.      But as weird as it sounds, I eventually forgot what it felt like to not hurt.  

I did what I knew to do.    I turned to God.    It is His strength that has gotten me through so many days.      Because of Him and my loving husband.

If you have never heard of fibromyalgia or know of someone who has it, let me tell you what you should know.

First, other than pain and exhaustion, people with fibromyalgia have to deal with the other fun symptoms associated with it.    These include chronic headaches, memory problems (I call it fibro fog), tmj, pelvic pain, noise sensitivity, tingling in hands and feet, temperature sensitivity, restless leg syndrome, depression, anxiety, irritable bladder and/or bowel.    Sounds fun, huh?

Second, I think the single most frustrating comment I heard in the beginning was, "You don't look sick."     Or the lady at my previous church who told me I was just being lazy.     It was tough, but I knew she didn't understand.     It frustrated me too that I wake up some days, get up to get dressed and then only have enough energy to crawl back into bed.

Third, encourage your friend to find a creative outlet.    One that forces them to have a goal.    Staying busy has been a lifesaver for me.     It pushes me to going.     My boys have been a wonderful blessing from God.    They accept me for my limitations with my fibromyalgia, but also give me motivation to move, move, move to be the Mom I want to be for them.


Dr. Wifey said...

i am so sorry you have to live with this disease :( my mom has it, so i certainly know how it affects your everyday life. for a long time, she let it control her. thank God she is now able to control it. *hugs*
oh, and we need to set up a lunch date soon!

Allison said...

I'm glad you don't let your circumstances control your life. I'm glad you depend on God for your strength.

I'm glad you're my fwiend. =)

HEATHER said...

You know I have it too, and I know what exactly what you are going through. Without the Lord, I know I would not be here. God Bless!