I'm Lost

I miss myself.
The me I used to be, before the pain and fear and exhaustion. I feel like some vital part of me it's missing now.

Oh sure, I put on a show, smile for the camera. I can be bubbly, I even glow now that Jason is in my life.

But there is some part of me that is lost. There it's a vibrant, creative, alive woman out there wearing my face, pretending to be me. The part of me that enjoyed watching the sun rise, taking hikes, reading books, the smell of snow and summer rain, a clean home... had escaped me some how. And I'll I'm left with is the debilitating, numb exhaustion or the screaming, ripping pain...

Mostly both.

The pain robs me of my ability to enjoy my kids, my home, my pets, my love, myself.

I convince myself that I'm only suffering from stagnation and that if I only get up and get going it will all be better. So, I rise, take a shower, do some yoga, clean some of the house and find myself so exhausted I have no energy left.

Jason and I are considering beginning protocols. Little tasks that I'm forced to do every day. My baby steps so to speak. My first protocol is that I get up every morning and make the coffee. Here is where milk jug woman would peruse Facebook, read, drink tea, or leen el diario.

I go pee, then sink back into the warmth of the bed.

Active missing girls does yoga, breakfast, writing a poem, and doing the dishes. I sleep.

Lunch, a walk, a shower, doing some laundry.....meditation and prayer time. Devotionals over the dishcloths, prayers over panties, sanctity during sock sorting.

This missing girl had definitely got something up on me and I want it back. I want a job, and income , a personal life.

Dammit!!!

Do you know how much it would mean to get a pain free (physical and emotional) hug from my kids. Remember the dates off concerts and trackmeets and boyscout duties?

And again, I look myself in the milk jug and I say, "mind over matter. I can do this without that other smarter, more creative, more articulate half of myself. Then I get up, get showered, dressed, teethbrushed, makeup put on, hair done, shoes slipped on, keys in hand....

And realize I have nowhere to go because I've hated on and alienated all my friends.

Here's another way of telling it. If each of your normal daily activities was a single brick on ONE of the great pyramids of Giza... I just choose my brick from the bottom most keystone spot and now the pyramids is coming back down onto my head.

Somewhere in here is a lesson about slowing down and only doing what is most important but for the time I just want to know why milk jugs gets to have all the fun and ends me with all the cool down exercises?

This is my chance to use protocols as bait to lure jugs back to me and once she gets here, adding no amount of harmony or trickery is going to separate us.

I remember being able to hike to the top of a mountain. Now I can't even get to the base of it.

I'm getting my mother fucking mountain back. And all the beauti-fuckin-wonder-ful wildflowers they're are to smell along the way.

Protocols, stubbornness, good timing, and a firm hand from Jason and the girls is going to get me back in synch with my missing half.

And you.

I'm going to need all of you too. So if you come over and the house is a mess, look me in the eyes. See what you find there. If there's tears perhaps you came by to help out with the cleaning a little. If their filled with pain maybe you came over to help cooking. If you come over and they're dull and lifeless then it's you're turn to spot a protocol that needs to be set up and put me at it.

I move when I don't have pain
I move when I do have energy.
Sometimes, I don't move just because I don't know where to go next.

Give me a gentle hug and some kind guidance.  And bear with me.

Loud Quiet

I should have known, when I felt the world tilt and saw the ground swirl up around behind me, that it was going to be a bad night. My wrists softened the blow my ass received and, as I went inside, they began to throb.

This is a new era. The era of #foxfirelove expired when I met his wife and found out how excited she was for me to move in and become her second wife.

This is the era of #soakingwetshoulders.
He cried on mine. I cried on his. Somewhere along the way, we found love. I'm happy now. I'm a partner instead of a parent or a participant. Still, it's only been three months and he hasn't experienced the mother of all flares yet.

It happened tonight. Yesterday was wonderful with romantic gifts and candlelit wine dinners, parties, and kid free hotel rooms after. So adult and romantic and lovely. Today was doughnuts and coffee with old friends and home again home again, jiggety jig, after the grocery store.

Made dinner that I was suddenly too tired to eat. Fell on my ass in a most graceful way, by trying to catch myself on Jason's pant's leg and almost pantsing him. Then, a last minute decision to watch an extra episode of Charmed, washed my faced, did a load of laundry...

Then, slid gracefully into a dark cool bed. It was too warm. That should have been my second hint. By then, I'd laid on my back, my stomach, my knees (child's pose) both left and right fetal positions and yes, I'd even tried both cat and camel poses before the tears came.

Anyone with fibro will tell you, clothes are too heavy and hugs hurt. I describe it as waves of electrical battery acid that roll over your body. I moaned, groaned, cried, screamed, begged, bargained... I even prayed.

Jason told me he wished he could kiss the pain away and my head, particularly my brain, wanted to wiggle free and flee the scene of human speech, it's tone, rhythm, and screechy clickity click nonsense like angelic glyphs on a chalkboard.

His warm hand soothed me and made me less likely to gouge his tongue or my eardrums out. The gently whispered words were like adamantian steel claws shreading at my skin, his touch like glass, my own cries made me want to giggle and flee at finally having reached the freedom of insanity. But his presence called me and I could hear a deep calm drumbeat in my ear, his heartbeat. I breathed until my heart matched the tone.

Fibro flares that keep you in bed with a low grade fever and make you sluggish and nonsocial are what everyone talks about. "I hurt a lot. I sleep a lot. Must be my fibro flare."

Well how about this? My skin is too heavy. Sounds hit me like sharp objects, smells like fists to the stomach. Clothes feel like chain mail made of barbed wire. Taste? Cereal is about what I can tolerate. The sympathy you give me is like a warm blanket that you wrap me in. The pain is still all inside but now I'm hot, claustrophobic, and muffled, and ashamed.

Tonight I cried out in pain. Not just, "holy fuck that hurt" but instead a "why why why why why why why" with drool and snot and tears and sweat dripping all over your nice cozy blanket of sympathetic pity.

And you don't have an answer for "why me" or "how come". So now you're stressed and in pain and triggering some memories of your own.

Fibro is like labor. But with labor, often at the end you've earned something, a new baby! With fibro, after the same amount of pain and sickness and hysteria, you're only incentive is that it starts all again.

At the end of fibro, the only thing you have is the dark, bitter night, the pain, confusion, exhaustion, loneliness, and the guaranteed it'll all happened again, very soon.

You're on the wash board, folks.
And the infidel is your own body.
It's you.

Then I get to get up and try to be thankful for oranges.