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.