Fibromyalgia and the Dragon That’s Me

Fibromyalgia and the Dragon That’s Me


Some days I sit in bed and silent tears roll down my cheeks. It hurts to breathe, it hurts to think. I can’t cry out loud because it might wake the kids. The exhaustion is deep and never ending, a wave waiting to wash over me and pull me under. I can lose hours and days in a place of twilight and pain. It’d be so easy to give into depression as well and let the abyss take over.

On those days I imagine myself as a dragon instead. The bed is my cave and all around the exotic gleams and glitters. Each jewel is a bit of precious energy that I have to hoard carefully. There’s only so much I can do in a day before I feel my heart racing. Or worse, toss the last bit of glittering energy away, ignore the warning signs and fall asleep unwillingly, no matter where I am.

Too Tired to Be Scared? You Have To Keep Going

I recently moved, downsized desperately. Being incapacitated has played havoc with my life and finances. During a move there’s so much to do. I’m a single mom and therefore the only one available to do it. I pushed and pushed doing what had to be done. Packing, selling, discarding as necessary. It’s overwhelming and frightening and feels like failure. Still I have to push through it.

One day I collapsed and fell asleep half on a pile of cardboard in the garage. I was holding a box cutter when I dropped down. I was lucky I only nicked myself. When I came to I could barely move. The cold concrete had not done good things to my battered body. Even worse was the fur I could see…I had left the side door open for light and a mouse had crawled in to die.

I have a deep primal fear of rodents due to traumatic events. Rats and mice especially, but I also view squirrels with suspicion. They are fuzzy little spies in league with the rodents. Normally seeing a mouse would push me into panic. I’d end up on top of a table screaming like a cartoon character. Doesn’t matter if its dead or alive, seeing a mouse will trigger primal fear and a PTSD event.

This time was different. I didn’t have the energy to scream or panic. I crawled into the empty house when walking was too difficult and fell asleep again. When I woke up the sun had set and my son was waiting. I forced myself to go to the new place filled with more stuff to do and start the cycle all over again.

Dragonomics — The Economy of Energy

This is what dealing with the dragging exhaustion of fibromyalgia is like. Day after day of guarding my energy, spending and saving religiously. Do I have enough energy to eat and brush my teeth? No. The coins go to teeth because I cannot stand to be dirty. I need to spend time with my son. If we play Munchkins what will I have to give up? Each choice I used to take for granted has become an endless negotiation with myself.

After the move I had more battles — I had to unpack, and fit the remnants of a life built in a four bedroom house into a 2 bedroom apartment. There’s less than half the space available and the boxes crowded around my ears. I had choices to make during this time. Do I take that glittering energy and use it to write? Or do I save it and do what needs to be done?

Things Lost Along the Way

Getting disability level sick is a succession of losses. You still have to do what needs to be done and that means pushing harder than ever. As my health got worse I dropped pieces of myself. I had to give up running and hiking of course. Photography went when my movement was limited. I love to listen to music, it soothes me. I especially like hearing it from physical media. I see a record as a connection to the soul of a song. Holding the entire package allows the message to really come through.

I had to give up playing records because I was afraid I’d drop it, break a precious memory. I listen and remember watching an artist play, smiling at the joy of creating and sharing. I couldn’t risk that on my non functional hands.

During the chaos and hurt of the move writing was the one thing I had kept for myself. And I had a hard choice to make. Do I spend energy on that piece of myself or do I give it to something else?

My family deserves a real home, so I’d unpack until I fell asleep and then wake up to do it again. My laptop sat on a shelf gathering dust, never opened. Wisps of stories and posts sat in my head then faded away. I put my creativity, the best part of me away and focused on survival and getting through the day. It was a choice I made with an open heart. And still, even giving up the last thing I’d kept for myself, it has taken me well over a month after the move to recover.

Gratefulness Enhances A Hoard

In that time of rising pain and slow recovery I was the dragon more often than not. I gave up wearing real clothes, unable to fathom anything but the softest sweats. I gave up cooking and my child took that on. I stumbled through the days in a deep fog, unable to think of more than the next step, the next breath. All of the glittering coins of energy were gone and I had nothing left to give until the hoard began to slowly accumulate again.

You might think I’d be bitter, and sometimes I am. Who wouldn’t be? In those darkest of moments I breathe deep. I remember who I am. I practiced mindful gratitude before I knew the phrase. Even during my childhood when things were bad I would stop and open my senses. I might be locked in a closet, forgotten and unable to see, but at least I am warm and no one is hurting me. I might be homeless in a park in LA, but today a kind stranger saw I was suffering and brought me to the restaurant they own after closing, fed me, and gave me hot coffee.

Gratefulness is a cushion that has always protected me

And I am grateful. The pain and exhaustion have put the world into a crucible for me. All of the nonsense has burned away, leaving room only for the important things. I used to waste time reading about random stuff, like the latest movie or the Person Who Said That Thing They Shouldn’t. These days that energy glitters in my hand and I close my fingers around it carefully. It’s too precious to waste on things that don’t matter to me. I’ll hold it until the time is right and then spend it on the things that matter. My hoard is something I treasure and guard — and shower on the important things without regret.

Previously published on medium


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