Fibromyalgia. My Friend

Sitting here on my bed, I can feel my body absorb the cold air after my warm shower. My skin is starting to dry and itch and hurt. Shane has opened the curtains to the window in our room and I’m thankful that the sunlight isn’t hitting me. If it were up to me, I would shut the curtains, even though we haven’t seen very many blue skies this winter like the one outside today. The light bothers my eyes and my brain. I’m trying to remember the last time I showered. Was it last Friday? No. The Wednesday before that, for Shane’s birthday? No, but I can picture myself with my hair down so it could not have been that long before I washed it. Tuesday Morning? I take out my phone to look at my calendar app. Did something happen that Tuesday that would force me to bathe? Oh yes, there it is. Tuesday December 10th. Ten days ago, I had an appointment with my Cognitive Behavioral Therapist. So, I’ve gone ten full days since my last shower. This would be astounding if it wasn’t so common. In reality, outside of my current comprehension, this may be the longest I’ve gone hiding my greasy hair and my body odors from my family and friends but there’s no way to know for sure. It’s not uncommon for me to go a week. What’s a few more days really?

 

The sunlight is getting closer to me.

 

Fibromyalgia. FIbro. FMS. The “F” word. My best friend has a name…

Sometimes I think the only faculty she graciously leaves to me are my words. My words that go beyond my body, beyond my heating blanket, beyond my room, and then she takes those too. This is the hardest time for me to love her. Because she is my jailer. My confidant. My abuser. My home. I have tried to hate her, but she always turns that hate back on me. 

She gets me to accuse me, “I hate my skin.” I say, “I hate my brain. I hate my muscles. I hate my bones. I hate that I’m always tired and slow and foggy and angry. I hate my body. I hate myself.”  But I have learned that she is nicer to me when I am nicer to her. I stop stressing and worrying about her next move, the next night she will keep me awake long after everyone else is asleep, the next day I won’t be able to get out of bed, the next person I yell at for touching me without permission. She is nicer to me when I forgive her of her transgressions. 

There is no cure. She has inserted herself into my life and she is here to stay. But I am striving to see her for her true self. I ask her to show me her face and tell me her true name. She only whispers but I can make out her word, “Compassion.”

The suffering and pain and loneliness that she causes me, that never leaves me is felt and endured by millions of others around the world. To you, I want to say, “I’m sorry. I understand. You are not alone.”

 

Shane has left the room. I’m going to get up and close the curtains and turn off the light now. 

 

 

To be continued…

Late Night Baby Travels

My son is sick and asleep in my bed. It’s the middle of the night and he wakes up because he’s thirsty. He gets out of bed, leaves my room, walks down the hall, past the child gate, into the living room, past another gate and into the kitchen. (I’ve been following him, curious of his nighttime stroll. We have sleep-walkers in the family. ) He goes right up to the sink and points. “Wawa?” I ask. He points and nods yes.  So I get him a cup and fill it with water. He takes it and goes back the way he came to my room. He sleepily takes a sip. I ask him if he’s had enough. He shakes his head no. Then he knocks one back, spilling water all over himself. Now it’s just about 1 AM and he’s wide awake and won’t touch the water. It’s going to be a long night.

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If I’m a Vegan, I can still eat at Taco Bell right? I mean, that’s not real meat.

I’m sitting on the corner of my king size bed, in my room, watching, “Too Cute” on Netflix and eating my vegan tacos. Two of my four kids are sick with Croup, Shane and I finally got them to bed and I realized that I’ve only gone pee once today.

I’m so tired that I’m beyond any form of sleep and I said I was going to write more, so here I am writing. Shane is laying on the other side of the bed and his black, gold toed, sock covered, feet are right in front of me. He’s arm is next to Allie, our youngest daughter and the eldest of the sick ones, and he’s rubbing her feet and back trying to comfort her. She’s been sick for a few days now and I think we are taking her to the doctor in the morning. One of the worst parts of having a sick child is taking them to the doctor and hearing them say that you brought them in to early to treat. I thought the point of western medicine was to help people, especially children, get better sooner not have them get worse before they can be treated. I think she’s over the worst of it though. My poor Liam, my youngest, is just getting started. 

I’ve recently discovered Vine. I missed becoming famous with that by a half of a year. (@shab_stuff) I bet nobody remembers the app, Cheers. I was on that in the first few weeks of it going live and I had so many cheer points! I was super famous on that app, unfortunately, I was only one of about 200 people and after 15 months of, “cheersing” stuff with no new users I had to accept that it wasn’t going to catch on. 😥 I’m still not sure what’s going on with the Circle app, and I’m open to opinions. 

I want to apologize to any readers who were drawn in by my awesome title only to find themselves tricked into reading it’s stupid content. I thought I was going somewhere with this post.

Anyway… Isn’t that what Ellen says after all her shows? It’s like her production company slogan or something. 

Meow Meow