purplerabbit

I have found that I don't post much these days. In an effort to get myself back to writing, I am following the "just write something, anything, every day" plan. I often have lots of "ideas" running around my head but don't get them down. Today, I made myself write it down. "IT" in this case is an explanation about how I feel most the time. I was on IM with someone else who has a chronic pain condition the other day and we were talking about how very hard it is to describe what life is like to those who haven't been there.

Here is my attempt.

It would mean a lot to me if you read this. Even more if you commented on it. I need the encouragement to write more.

Dancing Dreams and Waking Nightmares

Sleep - those little slices of death, how I loathe them. ~Edgar Allen Poe

All men whilst they are awake are in one common world: but each of them, when he is asleep, is in a world of his own. ~Plutarch

I am dancing. The music and my flesh are one - the beat in my heart, the rhythm in my blood. I am beauty, desire and freedom embodied. I can feel you watching me even with my eyes closed. I draw you in and spin you round in the magic I weave. You move with me, all of you. I am life's flame and your heart's desire. I weave all of them together as I move and make the fragments whole. I am the dancer. I am the fire. I am Firedancer.

And then I am waking. It is a slow process, like a diver coming up from the ocean's depths. My limbs move only with great effort and my body feels more lead than flesh. My awareness is sluggish and fights the pull of consciousness. Because with consciousness comes the awareness of pain.

Pain is so deep it feels like gravity in my flesh - as if the weight of the planet pulls every muscle and nerve. The beat of my heart is like a hammer in my skull, dull and harsh at my temples and echoing in the chambers within. My jaw is clenched, grinding teeth and the pain pulling back to the anchors below my ears and up along the back of the skull. My hands are curled like claws, each joint a point of tension. My feet feel as if I have been crucified, the center point of the nails ache where my weight has torn the tendons. The ache in my shoulders echoes this sentiment, as I wonder absently who might have tried to remove my arms while I slept. As each portion of my body wakes slowly to the pain, I often try to retreat back into the darkness of sleep, the warm blanket of relief that is unconsciousness. Sometimes I manage, letting myself sink back into the black, not fighting for the surface but urging myself deeper into the depths.

Eventually, I am pulled far enough up that I am aware that my throat is dry and my bladder full. I reach up to pull the dark mask from my face and allow light to enter through my closed eye lids. Next, I fumble to pull the small blue sponges from my ears. I lay with mask and plugs in my curled fingers as the light and sound of the day pound around me. It feels like bombardment as the noise and light force me further into the waking world and the knowledge of my Self - of the who and where I am. Finally, I fumble for the bottle of water to wet my mouth. Then the bottle of headache medicine beside it. I swallow the stone of comfort and wait for it to still the hammer and hope my bladder will hold a while longer.

Finally, I must pull myself from the bed to find the toilet. That is the moment when I must marshal my strength to coordinate limbs and push through pain to stagger to the bathroom. Once seated, a relieved bladder is my reward but the spinning head makes me wonder if I am up for the next step. Tea. Blessed tea, a healing balm that makes it possible to contemplate a day. I stagger to the tea pot, uncap the water and poor it into the shinny metal and turn the switch to start the heat. Pulling the brightly colored mug from its companions on the rack, I tear open the little foil bag and drop it in. It always seems an age until the water is hot enough to pour and then the long three minutes to steep. I remove the tea bag and add the creamer and stir. Finally I have the first sip. It runs through me like a jolt of current. I can felt the warmth work into my blood. Yes, I know most likely it's actually the sugar, caffeine and anti-oxidants. I drink my tea and build up my control again.

Ironic, that control. I spent years in therapy learning to undo the damage of childhood - to learn how not to "dissociate" from my body. Now it is my saving grace. I carefully build the shield needed to hold back the pain and function for another day. It is a great effort and sometimes I am better at it than others. Frequent cups of tea and daily naps help hold the dam. I often feel like that historic child with his finger in the dike. I worry that if I make the wrong move, or push just a little too hard, the whole thing will crumble and I will be lost forever.

Sometimes, I admit, I cry. I cry when I remember dreams of dancing. I remember what it was like to dance like that in real life. I try to remember what it felt like to not be in pain. I don't think I can any more. My life before the fibromyalgia often seems less real than the dreams. Did you know me then? Did you like that brash young woman? That young woman who hated sleep because it left her not enough time to do all the grand things she would accomplish. She was always in motion, that one. Like a whirling dervish, she earned nicknames like "Flash" and "Mischief" from those who liked her. "Bitch" and "conceited" from those who didn't. I miss her myself. I miss the energy and enthusiasm.

Or do you like the more considerate middle-aged woman? She is a bit odd, almost a hermit a times. Yet, friendly and talkative at parties - a teller of stories. She tells stories about her past glories or about her friends and family. She watches people and notices things. Or is she the one who you call when you need to talk? Because she is always there and has time to think. Has time to listen and consider. Time on her hands so to speak but not the energy to do the things she would like.

I hear the younger one's voice in my head, deriding me now. "You sleep your life away," she complains. Sleep was always a waste of time to her. She used to fantasize about not having to sleep. I read her diaries and realize that she often went days without it, and considered six hours rest as much as she was willing to "waste" in such a non-productive activity. Sleep, she thought of as an enemy.

Now, sleep is my lover and friend. Soothing, comforting, freeing. Twelve hours rest and I can almost function like a normal person. As long as I also have a nap later in the day. Even in nightmares I am stronger than I am in my daily life. Is that a shock to you? That I prefer a nightmare where I have energy to a day of pain and lethargy. And my sex life flourishes in my dreams. In waking, I love sex but often find holding the pain at bay robs me of the ability to orgasm. I am whole and healthy in the dreamtime. I am beautiful, talented and my bodies are always responsive. Bodies. Yes, because I have many bodies there. Male, female, both. No limits.

These days, I am awake for you more than me. I am awake to be part of the world that often feels like it is leaving me behind. I wake more easily when my boy is here because I long to be as much a part of his life as much as possible. He makes the pain retreat faster because he brings me so much joy. I wake to love my husbands. To share with them their lives. I wake to talk with my mother. To be a support and a friend to her. I wake to be with my friends, when they have the time for me. Yet, I often feel like a voyeur in the lives of others. I am watching, but rarely feel like a full participant.

I so want to feel alive again. The younger self within weeps for the hours, days, yes, maybe years, I am loosing to this. I wanted to accomplish so much with my life. There is so much I still want to experience. So much that I want to be. Yet, most of the time, it seems beyond my reach. Only in my dreams does it seem possible.