Breaking Out of the Glass Box

From time to time I find that poetry is the richest way to describe certain experiences that accompany living with a chronic illness. One of these experiences is that of the fatigue that comes with systemic lupus. It is an exhaustion that cannot always be seen by the outside observer, and not adequately captured by the use of words such as tired, fatigued, or sleepy alone.

The following is a poem about this experience:

Inside this box I sit, the world surrounding me. I see people, the street, the sky above me. ... This damn glass box follows me.

There is a distance between us. It is one you cannot see. I know it is there because it keeps me from fully engaging.

I listen to you. I hear the words you share. I am there. I am there with my glass box, the one that is invisible to you. Inside my body coils as my mind wanders to a place of sleep and peace. I hear you but I want to close my eyes. I walk down the street, but I want to lay down to sleep.

This glass box keeps me from moving freely, sucking my energy, despite how many hours of sleep. Eight hours...? That is a joke. The box requires more. It holds you hostage as you watch others go about their day with physical ease.

I am trapped but unseen. From the outside I look fine, somewhat sluggish, and maybe a little lazy. This glass box hides its evil from the world, but I know it. I know the need to drink cups and cups of caffeine to get through the day, the need to nap and lay down by noon everyday.

How do I break this invisible box? That is the problem. Nobody really knows. I am bound by the rules of this box... to rest and sleep as much as it requires, so much of it not in my control.

I yearn for a moment of life outside this box. What's it like out there? Let me out please... How can I shatter the glass boundaries of this disease? What has happened to my energy? I do not know, but I need to sleep now please...