Burn the White Flag

It was a Sunday morning, the light streaming in through the blinds as I lay in bed trying to do some work on my laptop to catch up after a busy week of physical therapy, school commitments, toddler wrangling, and feeling unwell. I was listening to a playlist on Spotify called “Happy Folk” as I stood up to stretch my aching body. As I grimaced in pain, I heard the lyric, “I’ll be an army. No, you’re not going to stop me getting through. I’ll sing a marching song and stomp through the halls louder than you.”

I settled myself back in bed and listened to the song about five times, tears streaming down my face as I heard the message I needed to hear.

Lately, I’ve been experiencing an increase in fatigue and sleepiness, as well as some other issues with joint pain, a rash on my scalp, random low-grade fevers, dry eyes, and eyes that sometimes feel like someone smeared cut onions directly into them. The rash on my scalp along with a small patch on my ankle and knee was diagnosed as psoriasis, and I was sent for lab work since I have a family history of various autoimmune diseases. My ANA screening came back positive. It could mean nothing; it could be something. I’m waiting to see a rheumatologist in September.

When I got the results of my lab work, I had a hard time processing the emotions that quickly surfaced. The most prominent of these emotions was downright frustration. Frustration at my body for betraying me once again when I’m still so young. Frustration at the prospect of having to go see yet another doctor for more tests. Frustration at the idea of tacking on yet another diagnosis to my medical history. And honestly, frustration at trying to do so many things for my health – eating a restrictive diet, exercising when I can, taking medication, journaling, etc – and feeling like no matter how many things I try, I still struggle.

There are times in this journey when the weight of daily struggle feels so heavy. While the world moves around me in a pace I fight to keep up with, I lie in bed or sit on the couch while my son watches YouTube kids, feeling inadequate because I just cannot do that day. And I know that all of you reading have these days and these feelings, too.

And still I rise. We rise. We get up in the morning, get the kids to school, take care of our pets, teach our children, do approximately 87 loads of laundry, work in a myriad of different jobs in different fields, lend our shoulder to a friend in need, participate in support groups and community events…. Whatever we can manage on a particular day, we do.

It occurred to me that every time I make myself a plate of nutritious food, every time I go to physical therapy to build strength and flexibility to support my joints, every time I swallow pills to help me stay awake and pills to help me sleep, every time I organize and attend #nchat on Twitter… these acts don’t mean I’m surrendering. No, these acts… these are acts of burning the white flag.

“I could surrender but I’d just be pretending
No, I’d rather be dead than live a lie
Burn the white flag
Burn the white flag”

We in the narcolepsy community are an army of warriors. We in the chronically ill community are an army of warriors.

We are white flag burners.

 

I want to hear from you!  Do you have a certain song that you listen to for inspiration and/or motivation? What acts do you do to “burn the white flag?”

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