When You Can’t Wake Up

“If you want to make your dreams come true, the first thing you have to do is wake up.”  ~J.M. Power

But what if you can’t? What if you’re held victim to a disease that holds you back? What if everything that you dreamed of was washed away with a phone call telling you that your life had changed forever.

I deny my disease. I try to avoid it the best I can. If I’m feeling “normal” (I use the word very loosely) I act like it never happened. I struggle to talk about my disease beyond “This is what lupus is and this is what it can do.” I refuse to let my lupus consume me. When I hurt, I don’t complain because I refuse to allow you to think I’m weak. When I do complain…it’s a bad bad day for me. My life is one big competition against myself…against something that tries to destroy me from the inside.

How do I wake up to make my dreams come true, when all my body wants, desires, needs is to do nothing more than sleep until the sands of time let her regain moments from yesterday? How do I watch my children grow and enjoy everything about them when I have to have my three year old open his own yogurt? Or I can’t answer a simple question from my husband because I can’t concentrate long enough to understand the question? How do I believe in myself when everything that I do my body proves that I’m wrong?

I have had days lately that have left me crying in pain. Nights that have been sleepless despite painful fatigue because it hurts to lay down, to move, to have any pressure on my body. As I lay there cursing my night, my sleeping family, my body, I realize that I can’t feel my fingers and can hardly move my hands. My unintentional wincing wakes my husband up enough that he reaches over and pulls me to him as he whispers “Baby, it’ll be okay.” What he doesn’t know is him touching me hurts me even though all I want is his body heat to be a body sized heating pad on my aching joints, my swollen body, my bruised muscles.

I’m in mourning. I have days where I mourn after and during a flare the life I could have had. The body I didn’t get. The world I didn’t know. I saw this coming. I felt it every morning when I woke up, but I denied it because…I don’t want this disease. I don’t want it to have power over me. I don’t want it to have power over my family. I don’t want my sons to know that someday I may take a turn for the worse and I won’t be able to do anything at all. I don’t want myself to know that.

So to avoid knowing it…

I avoid acknowledging it.

I avoid admitting that its cold grasp has held on to every part of my body.

I avoid postponing or not doing things that I enjoy doing.

I continue to run with my kids. I continue to work out. I continue to spend over four hours at a museum with my sons so I can smile, laugh, and experience their fascination of trains, planes, and all things I adore. I continue to live my life.

Until I can’t.

Until the spindly fingers of lupus and fibromyalgia grasp onto my body so tightly that I can no longer move.

Until the fog settles in my mind so completely that I can’t remember what I was saying three seconds before.

Until I realize I can’t lift my son so he can push the buttons on the microwave so he can “make his own food.”

I try to fight harder. I clean more. I do more. I am more.

Then I collapse. I collapse into a pile of swollen limbs and parts. My fingers white and numb. My hair falling out in clumps. My face covered in a rash.

I collapse and some days I need to be carried into my bed, but I continue to shuffle my way there by myself. I collapse and all that is left is a whimpering woman determined to try again tomorrow.

Yes, sometimes you have to wake up to make your dreams a reality, but then there are those moments where you have to lay down, sleep, and let your body determine your dreams.