She lies huddled on the bed in the dark. Curled up in a defensive ball. Hands covering her ears. Eyes squeezed tightly shut. Shivering, trembling, terrified. Cheeks wet from silently shed tears. Alone. So alone. 

He waits outside the open bedroom door, leaning on the frame. The door has a lock, but she learned long ago that using it was pointless. He got in every time. He watches. Intent. Sensing her fear. Feeding from it. Becoming more powerful for it. Her hopelessness washes over him in waves. He smiles. 

She fought him for years. Fought with her very being. For control. Using her extensive, expensive arsenal of weapons. He defeated each one as if it were nothing. The guns jammed. The knives missed their mark. The arrows couldn’t pierce him. Still she tried. She was strong. He was stronger. 

The screaming was the part he enjoyed the most. She raged and threatened as long as she had breath left in her lungs. Then came the pleading, begging, bargaining. She only did it when she was close to giving up. It was all she had left. But he laughed at her. 

She remembered her life before he took charge. Before she became his prisoner. When she was her own person. She had a life, family, friends. One by one he took them all. Leaving her empty, exhausted, unable to fight back. 

But she tried. He admired her spirit and will. But he enjoyed breaking her even more. That was his job. And he excelled at his job. 

Maybe someday someone stronger than him would come along. To save her. To help her beat him. To chase him away. To soothe her broken body and mind. To let her live again. At peace. Maybe even smile again. But not today. 

Today chronic migraine wins again. He is her captor. She, his unwilling victim. 

Staying Positive? 

So. How do I stay positive when I am living with a chronic illness? Good question. And I wish there was an easy answer, but, like most situations dealing with chronic pain, there isn’t one. 

I deal. As best as I can. Every day brings a new beginning. A chance at a day better than the bad ones that came before. A possibly light pain day. Maybe somewhat productive. Hopefully I will be able to get through the “easy” parts without too much stress. Without tears. Without frustration and guilt and doubt. Without my demons mocking my every move. 

I start slowly. I sit up in bed at 4 am, per usual. Woken by either pain or insomnia or nightmares. I stay sitting for a few minutes. Cataloging each and every body part for pain, stiffness, numbness, or weakness. I put my feet on the floor and reevaluate. This small movement sometimes changes everything. I stand. Once again checking in with my body for help deciding my next move. 

Can I shower? Yes, if I’m careful. Can I wash my face and brush my teeth? Maybe. If I take it slow. Yes! Both chores done. Now I sit for a minute. I’m exhausted already. My head is starting its typical drumbeat. I consider my next move. Will I be able to go out? That involves getting dressed, putting on makeup, fixing my hair so it doesn’t look like I haven’t washed it in three or more days due to pain from the water on my head (i.e. allodynia.) My brain hurts. It’s too much. I sit back down on my bed. I haven’t even had my coffee yet and I’m ready to go back to sleep for the day. 

I push on. I take my morning meds. I’m currently at 9 pills. I need my coffee. I settle for clean underwear, sweats, and a t-shirt for now. I make it to the kitchen. Coffee is ready. I pour myself a cup and almost drop the milk as a pain from out of nowhere shoots through my elbow. Huh. That’s new. I grab the ice pack and head for the living room. (BTW, it’s 100 or so foot area I’m in, one floor, not a mansion wing!) 

I settle in my chair with the ice and reach for my heating pad for my neck. Pillows situated, I lean back and take a deep breath. I take my first sip of coffee and close my eyes for a minute. It’s now 4:30. Nothing has to be decided for a few hours yet. In that time, things may drastically change. 

My head pain may rocket from a 6 to a 9. The nausea and light and noise sensitivity may propel me to the bathroom for a time or even back into bed. My back might start spasming, which requires another pill. The side effects of the pills may cause a myriad of symptoms. I may be too unsteady, lightheaded, or nauseous to drive, in which case I have to skip going out. ParaTransit requires a day’s notice. (I never know how I’ll be until each day starts.) If I have an appointment, I may incur a charge for late cancelation. Money that I don’t have. 

Or I may be okay to drive. Even run a few errands. My back might cooperate and my symptoms may be mild to moderate, but not severe enough to stay home. Alternatively, symptoms may flare while I’m out, leaving me in the precarious situation of driving home after taking pain meds or waiting until I get home and the pain is beyond pills and I need to give myself a shot or go to the ER. It’s a coin toss. Every. Single. Day. 

So. How do I stay positive? Could you? It’s a daily struggle. Me against my demons. (Demons being my own body and mind conspiring to keep me from living the life I want to live.) Some days are better than others. Each morning I attempt to put the previous day behind me and begin anew. It’s not easy. But my will is strong. And as long as I push myself past my limits, I consider it a victory. 

My World

So. I’m exhausted and in pain. Beyond exhausted. Just ran a marathon exhausted. Swam ten laps in the pool exhausted. Body like lead. Can’t lift my head up, bone-deep exhausted. Pain like I was hit by a bus. Muscles screaming. Joints throbbing. Nerves on fire. Back spasms. Head feels like a vice around my forehead. Like an ice pick through my eye. Throbbing, stabbing pain. Descriptive much?

Am I in the hospital? ICU? ER? Urgent care? Doctor’s office?                


I’m at home. In bed. Trying to survive. Just a typical day in the life of a chronic pain sufferer.