Running on Empty...and a Really Good Playlist

My body may be low battery, but my playlist. Fully charged and slightly unhinged.

You know the old saying, “small but mighty”? That’s what living with chronic illness is like. Except there’s a lot more days I feel small, rather than mighty.

When I open up about my illnesses, it sounds like a crazy, twisted Twilight Zone episode. I feel like a freak sometimes. From the scars across my chest, on my hands or the ones front and center on my neck, I feel like Sally. Stitched together, pieces of me falling off every now and then. Being confident isn’t always easy. Feeling comfortable in your own skin can be even harder after a new surgery or diagnosis. At times it can even feel that God hates you. I mean, why else would I be stuck in this failing body?

How do I cope? Music.

I have a playlist for those days. Some days feel overwhelming, impossible, then there’s the days when hope feels lost or when I’m drowning in appointments and treatments. Music is vital for the soul. Be it heartbreak, moments of uncertainty, happiness and joy or when I ask myself why I am here or what comes next.

Music brings clarity. It shines a light deep down in our souls, speaks to us, kicks us in the gut, gives us courage, moves us emotionally and reminds us of better days are coming. Music speaks softly and screams loudly when we need it.

As a spoonie, music is a lifeline. The days I’m tired, ready to give up, music wakes me up and shakes me free. The moments I’m lost in the why or how, music comforts. Music is the key to finding my voice again. Music calls me back to the fight and encourages me to dig deeper for one more day.

Music is life for the broken and its medicine for the sick. Some days it can be a wrecking ball; other days music can soothe the pain. Music is a gift echoing through our bones. Music whispers, “you’re not alone” when we need assurance. Music brings peace in loneliness. It pours down like rain in the silence. 

Music for the sick, resonates resilience when we feel we’re taking our last breath. Music may not be able to heal our bodies, but it does heal our souls. 

Chronically Complicated (0/10, Do Not Recommend)

Simple? Yeah...we don't do that here.

You know that old saying, "If you know, you know." Personally, I'd rather not know. Chronic illness just doesn't work that way, unfortunately. Maybe if I said no to additional lab work, protested any more testing, refused one more surgery or stopped showing up to my doctor appointments, I'd know less. That is until I landed in ICU or something.

Ideally, finding out I was suddenly cured overnight would be best. Think about that. No more pokes, IVs, hospital stays, lab lists as long as Santa’s lists put together or a growing pharmacy of my own at home, Wow! How would that feel? I don’t know. But since we all know that's not plausible, I'll just go with the daydream, for a minute or two.

Any time new symptoms show up, I freeze. I just do. I don’t have time to sort out normal from abnormal, just a glitch to complicated, or “ding, ding, ding” new problem alert! Look, I’ve accepted this way of life, and all the crazy chaos that goes with it. But I’ll say it... I hate being chronically ill. It’s just ridiculous, is what it is. 

The worst part is when your doctors can’t figure out what’s happening. Why can’t they? You don’t ever present normally. You’re special. Or as my neurologist says, “Christina you’re complicated. I learn something new from you all the time.” Yeah, that would be me. Why would I do anything in life, more less illness, normally?

The best advice I ever got was from my oldest son. “Normal is overrated.” I keep that in mind every time a bone breaks for no apparent reason, lab work goes wacky, a new hot spot shows up in my scan, bruises appear that I have no idea where they came from, or blacking out and wondering why I’m on the floor. Again, not a normal life. But then again what is normal?

I have no idea. And I never will. I can’t complain or be mad. I don’t want to waste the time I have with bitterness or what ifs. All I can do is keep swimming. Keep trying. Keep living. So, what if Parkinson’s disease and a REM disorder are the new flavors of the month? 

Let’s face it, I’m not thrilled. It’s a bitter taste in my mouth. And yes, I’m still letting it sink in. Probably not well either. But does it count that I’m trying? Cause that's what we do, those of us, chronically complicated. Every day we live with chronic illness, you know us spoonies, we make a decision to get up and keep going.