Fibro UnFriendly

English: A zombie

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If Fibromyalgia was a mood and not a chronic illness, it would be grumpy, mean, hateful and cranky. It would be the scariest monster that rages everywhere, over my bed, not even bothering to hide but willfully taunting me in the open. Once constant factor is the weather and its changes, enemies.  I want to set up all the old green plastic soldiers that my son used to play with constantly and place them on the Batmobile and fire truck and police cars and surge through dividing lines. I want to storm the troops of Fibromyalgia pain and run them over completely. In my fantasy, all that would be left in their place would be peace and pain-free living.

I know, I’m living in a dream world but it is better than the one that I am living in now. At night, which used to be my savior, snugly asleep under the covers, has now become another battleground. Pain wakes me up, the newest pain is in my arms and elbows and I never feel well-rested. I try to ignore it at night but minutes later it wakes me up again. I imagine the enemy mocking me, sneering at me as if to say “you thought I was only going to appear once then go away for the rest of the night? HAHAHAHA” ‘That is what I was hoping for’ I try to mumble under my breath.”FOOL” they spit blood right back in my face.

Why do all these new pains seem to intensify after my visit to the Rheumatologist when the blood work is in? Liver function? A little high? Sediment rate? A little high?  Auto-immune disease? Yes, I have that too, an auto-immune disease of the thyroid, known as Hashimoto’s Thyroiditis. When is it too high and what do they do about it? A question that has never been answered so far. Should I take Tramadol, “you could give it a try.” I don’t want to give anything a try, I’m frustrated and tired and inflamed and I just want a definitive answer which I know logically I won’t get. The answer is “let’s recheck your blood in two weeks.”

I’m frustrated, even the small flight of stairs in our house seems insurmountable. My ten-year old dog can come up and down those stairs better than I can when I am in a Fibromyalgia Flare (if that’s what this is, we rarely know for sure.) I have to grab unto the shaky metal banister and pull myself up, hear myself groan out loud, the sounds coming from me are more animal-like than I would care to admit. I try not to emit these sounds when my children are home but sometimes I can’t help it. They know I have this illness, but it doesn’t mean I don’t want to protect them as much as I can.

I drove away their monsters when they were little, why can’t I drive away my own?

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Those 3AM Monsters

I am trying to picture a small, clear glass bowl filled to the top with plump blueberries sprinkled lightly with sugar.  The color, taste and texture of a red-green mango ripened to perfection. I am trying to remember the rare moments in time that life feels perfect. The moon making my bedroom alight as if someone forgot to turn off the downstairs lamp. The first smell of spring after an especially long winter.

When I cannot sleep, like last night between 3am and 6am,  I tried to remember things that make me happy. It doesn’t help me fall asleep but once in a while it fights off the anxiety that lurks in my stomach and slows down the racing of confused mind; I wish I could tell you it worked last night but it didn’t. Nothing did.

Everything seems worse at 3am, doesn’t it? The bed is lumpy and the pillows are too hot, I turn them over and around but nothing works, they are either too plump or not plump enough. Sometimes I take my hand and try to finger the softness of my pink and beige fuzzy blanket, thinking that may calm me down, but no luck.  I reach across the bed to where my husband sleeps and I take my hand and try to wrap it around his arm or lay it on his back; but even that reassurance does not help me chase the terrors away

In the past when I could not sleep I would take my flashlight and sneak down the uneven, noisy, stairs and my dog would follow me. Every time she sees me get up from bed with a flashlight she knows it’s snack time and she joins me; she is my snack buddy. It’s our own little secret and everything I taste, I give her half. A slice of hard salami, a digestive cookie, a slice of sharp orange cheddar cheese, toast with butter. I like our time together, my dog and I. We are both getting older and yet it affects me more to see her almost- white chin, than any wrinkles I may have gathered on my cheeks. I watch my best friend try and jump on my bed and I know it is not as easy as it was when she was much younger. She is turning nine on March 1st and I worry about that too.

Without the sleep I so desperately need everything is dark black and I still feel scared. Breathing exercises don’t work, counting backwards from 5,3066 does not work. I feel frightened and  confused and at 3 in the morning every thought or fear that I have are magnified one hundred percent.  I am anxious, I worry about little things that I need to do, not that they are difficult, just that I have not done them. Everything balloons up with intensity and my body flips from side to side to see if I can find comfort in a different part of the bed, deeper in or throwing off the blankets or taking my night-shirt off.

Children know all about the monsters in the dark. As parents we sweep closets and look under the bed with flashlights and leave a light on in the hall or a nightlight in the corner of a room. We will do anything and everything to make our child feel safe, comforted, cherished and loved. Grown-ups don’t have the privilege of people taking care of us. There is no one to sweep under the beds for us or shout random phrases for the monsters to flee.

We cannot be so easily reassured. We suffer through the hours, the minutes, the seconds, it takes for our brains to slow down; until we are so over- tired that we drift off to sleep without the comfort of knowing it.