Having Fibromyalgia just plumb feels terrible.

Rest, rest, rest. Not so easy to do after a week... three weeks... a month... a year... three...

This is life. On the daily. No pause. Benadryl, Nyquil, Sudafed, etc. does not work for us. EVER.

Someone lamented to me recently about a bout with the flu. How hard it was to walk through the cold, how they bought all these over the counter meds to get better, just how very, very miserable they were. All I could think about was,"at least your flu went away." I didn't say that, of course. I commiserated. I tried to be empathetic. It's hard though. Anyone who says otherwise might be fibbing a little.

See, this "flu" we've got will not go away in a few days... or even in a week or two. These aching, throbbing, weak limbs will not start to feel strong again in due time. This "pull me to the floor, I'm so exhausted" sensation will not be gone soon.

It's here to stay.

We just do what we need to do anyway. We have no choice. We either give in to the misery, get depressed, and feel like the world is out of reach (This happens regularly. The doldrums come with the territory. Take your recent flu story and utter misery and remember how much you moaned and wanted to be left alone.), ignore the very real physical limitations we now live with and end up crashing & burning hard, or find the silver linings wherever we can because it really is THIS hard to be this sick, and we try to maintain some kind of balance between resting and doing what we actually need to do- take care of our children, cleanse ourselves, wash clothes, interact with the people we live with even when our muscles and minds scream, beg, plead, demand bed only please!

It's a nightmare.

I've been in a particularly brutal season, after a few brief months of sunlight of the soul. After all the chaos and denial... the grueling battle between the onslaught of sickness and processing it, I finally felt somewhat managed. But managing Fibro is not an easy feat. Not at all. One tip too far in one direction can cause a severe backlash.

So, I'm still learning. Still getting up, falling down, getting up again. It's times like this that make me want to isolate. I don't feel a part of the world around me. I feel stuck. Rapunzel in her tower. All sadness or displeasure swims to the surface and makes the eyes all grainy. I look for a flower, a cool breeze caressing my skin, the cheerful sound of the child I love and miss, a really good book. I look for hope and try to cling on because it starts to feel very bleak.

Is this real?
Am I crazy?
Is it really possible to feel this much pain?
Surely this is a dream!


Those are some of the thoughts we go through. When the pain is so bad we beg to have the limb chopped off, when the fatigue is so pressing we cannot even think a single coherent thought, when we realize that tomorrow we will have to go through the exact same thing...

Our own private little obstacle course... except ours is made of other peoples voices, televisions in the background, lifting a floofy to wash our skin, getting dressed- and ouch! It really feels like a sunburn! I can't wear anything! My skin is BURNING!-, the hum of the fridge, the water making a wild song as it cleans the dishes, putting on shoes- wait, why did I walk in here?- and it goes on and on and on.

We live for the "good" days, which are truly only passable days. We find our happy and we try to remember it when the sickness is sucking us dry. Bone dry.

We are survivors. We are lucky. We could give in so easily. It's so excruciating and it never stops. The physical pain, but the emotional pain too. The being judged, dismissed, criticized. The way our self-esteem takes a dive and lifts and dives once more, based on how sick we feel that day. We keep climbing up. We are the lone survivor at the end of the horror movie. We are the ones who will always keep you covered. We will not back down. We will not surrender our lives to sickness, even though it damn near gets us too.

We are messy, imperfect, frail and tough together. We cry, we laugh, we scream, we suffer.

We are dreaming in miracles even when we don't know we are.

Someday the world will know the truth about our sickness. They will discover what causes it, discover new ways to treat us, validate all of this agony. We will be more than a Lyrica commercial, more than a magazine article, more than someone's story of Fibromyalgia.

We are writing the whole book with our lives.

In our opening of the eyeballs each morning, in the comforting words we offer one another, in the lifting of the milk carton, in the doctors' offices, in the prejudice against our rosy cheeked glow- "you don't look sick"- in our whole lives...

we are telling the tale of how Fibromyalgia was discovered and understood.

Let us dream.