My sloppy, loose innards

NOTE: This may seem self indulgent, but I need to explain where I live if only for self clarification. Somehow, I think it touches places in all of us. If not, just skip this.

I can’t do this anymore. The 12 years of pain and craziness. Yesterday, I had a haircut, which included what I thought was the best shampoo. She even lathered me twice, scrubbing my scalp each time, conditioning my hair me the same way. Last night, every nerve ending in my scalp started screaming, which ignited a chain reaction down my neck and spine. And that, of course, affected my already dicey getting to sleep, then staying that way. Without a deep sleep, my muscles don’t rest, I awake in darkness and the anxiety loop latent in my brain during the day is triggered.

So I am too tired to drag my butt to yoga this morning that I desperately need, but, which I know, will bring more pain today.

The world of fibromyalgia sucks. It has its ups and downs and right now I am reeling in a low area.

And people dare to tell me I look fine. Without the experience of it, you just don’t get it. During another low, I tearingly sought the help of an endocrinologist who said I looked too well to be there. “Looks can be deceiving,” I barked. He plied me with drugs, which I willingly took as I was too weak to resist. They helped for awhile, then he told me to stop them. One morning I awoke to such dizziness, I couldn’t move. It worsened all day and as I soaked in the tub trying to forget, a sneaky thought chilled me: it would be so much easier just to slide my head underwater for a bit and then IT would be all over. Oh yeah, I can’t; I’ve got a kindergartner getting off the bus in a half hour. What would this do to her?

Turns out I was in withdrawal and the bastard doc should have known better. My husband lumped me in the car the next day as I stretched out with the seat fully reclining to brave the dizziness and 30-minute trip across town to an alternative physician. No way was I letting the bastard touch me. The gentler doc told me what I already intuited: I’d have to get back on the drugs and wean off slowly. Took me several months to crawl out of that hole.

For some while, I have maintained with shorter down episodes by identifying environmental and food allergens and, for the most part, removing them, vacillating between benadryl and melatonin for sleep, swimming or doing yoga 5 times a week, getting periodic massage/shamanic counseling, throwing myself into spirituality with regular worship, doing freelance when I have the energy and clients, parenting and painting and writing when I can. I can't erase the urge to be productive.

Maybe I have forgotten what a longer bad patch is like. I also know menopause is not a good mix with fibro. The best description I have ever read of fibro for those who have not experienced it is like waking up with the flu, feeling as if a Mac truck has run over your body and having a stomach virus all at the same time all of the time. Fortunately, I do not have the irritable-bowel component.

I used to be such a morning person, having slept from the instant my head hit the pillow, then bouncing gloriously out of bed like Tigger, ready to meet the day head-on. Now I have lain awake awhile, talking myself into facing the wall of pain moving creates to get out of bed. The only places that don’t hurt, usually, are my lips, elbows, wrists, humerus, ulna, radius, femur, tibia and ankles. It’s good to focus on the positive – isn’t it? Everything else aches or is stiff. However, the mental momentum required to arise is rewarded with less pain once I actually get moving.

So, I ask myself, how did I get here again? Don’t think I haven’t asked God the same question.

Just two months ago, I felt almost pain free, full of hope and love after spending a week alone revising a book I will publish. Today that task seems so much further off than it did in January. But since then I have weathered the rejection, after what seemed like some courting, wooing and possibility, of a top NYC agent and a six-week stint working in my Quaker meeting office. The office work was a trial and just to give me some cash while I pursued the book. But different people had different ideas of how much the job would pay, its flexibility and actual duties. All of those were communicated to me independently and two large projects awaited. I immersed myself and worked with the speed, intensity and professionalism as if I were getting my usual freelance rate though this trial was paying only a fraction. I felt burdened, pressured and also lost my sense of my faith community being a safe place. Worship changed for me.

Hum … worship. I haven’t had my weekly hour of mostly silence in a month, I feel detached from a place I have worshipped for 12 years.

12 years. Yes, there is a coincidence between the onset of fibro (which took me years to ID) and my spiritual journey. Pain forced me to seek relief in any way possible and directly led me to my Quaker meeting.

I have prayed, talked to and stormed at God privately and even with another present. But I have not experienced corporate worship in what seems like a really, really long time. My response to pain of most kinds is to shrink back and turn inside: to deal with it myself and not seek outside help.

Maybe I just need to pray in community. Maybe I need to ask the community to pray for and hold me. My stubborn inner self doesn’t want to have to ask. It wishes it would just happen. I can intuit how people are feeling and forget that’s not universal.

Asking for help. To save myself, I think I have to do this.

• What is my continual struggle?

• How do I deal with the pain in my life?

• How do I approach God when I am in crisis?

• How do I surround myself with the support of others?

• How am I able to seek help?

at yoga last week,

the instructor said to stay soft inside

and hard outside

my external hardness feels like

a brittle shell that's beginning to crack

and I am afraid to let the sloppy,

loose innards seep out

they are innocent

inside they are protected,

outside, exposed

will I be accepted

if seen for myself?

vulnerable and imperfect,

creative and loving