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What It’s Like to Be in a Constant State of Pain With Fibromyalgia

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There are these weird spaces between my words and my feelings — expanses of time and space that sometimes feel huge and other times tiny. Lately, the space between my words and what they are meant to convey is millennia from what they actually do. There is nothing that makes this need to escape explicable. This is something I can’t ever outrun and I know that. Yet, it doesn’t stop my brain, heart or mind from wanting to try. I can’t hide from my skin. I can’t cower from my joints. I can’t stop the burning or humming or buzzing that exists under my skin. I can’t get over this feeling that the need to get out is all that is left.

What I can understand is that as much as this is physical, it is also emotional. The pain seeps into my every moment, taking time from my family and me, making me feel like my life is the worst prison sentence I could be given. Pain makes things difficult and the inability to categorize or even quantify it can leave you in a place of isolation that echoes all the depths of hell.

It’s exhausting to smile. Agonizing to shower. Impossible to lay down, sit up or communicate. Walking is a full blown sport and so is thinking.  I can’t even imagine traversing the eight steps it would take to get out of my house and down to the sidewalk below, or even further than that to the library, the vegetable store or the bench around the corner.

I sit with thoughts of this not being my life, thinking that maybe the people who told me this was some sort of cosmic religious punishment were right. Thinking that maybe getting through this muck and mire will always be my lot. The forever lotus, always fighting through the depths for just a gasp of air or glimpse of light. Am I meant to always feel like I am drowning, even when I’m smiling? Is that what it’s supposed to be?

This place where things just don’t fit anymore — the music a little too loud, the puzzle pieces a little too small, scattered and strewn across the table. That’s my life. I wonder if time will ever figure this out. My biggest fear is that it won’t and I will be left waiting for an answer that just might not exist — not for me at least.

I didn’t think my 30s would be filled with so many wonderful memories but their corners are blackened and marred.  Every memory is attached to some type of pain afterwards. Small or large, it’s there. It’s almost like eyes existing behind a darkened panel. You can only see them if they are opened, sneering, and they always find me.

I am tired. So tired, my bones ache. My face feels like a mask, plastered and empty. My eyes hold all my pain, no matter how hard I try to hide it. I know I don’t have to hide a thing. Why would I? Everyone around me loves me and wants to be sure I make it through this — as much as humanly possible. But that doesn’t mean I feel like I’m not burdening everyone’s life with just my existence. If you love me, you worry about me.  If you love me, you hate to see me in pain. If you love me, you constantly wonder if and when I am going to get better so you can stop doing all these things. I am sorry loving me can be so hard.

Depression holds the hand of chronic pain. Someone told me that once and I thought by pushing things to the back of my mind, to the pit of my stomach, it would eventually stay where it belongs. All the sadness, all the disappointment I have in myself, in things unaccomplished and dreams still unfulfilled.

All those things bang around in your head and your heart when you feel like the life you still have to live is passing you by. This has changed everything from my ability to work, to parent, to friend, to love, to be a good daughter, sister and wife.  It has starved me of moments I just can’t get back — laughter, fun and intimacy. I can’t understand how I’m in the first year of my 40s, still sitting in bed in agony typing about things that have not changed one bit. Typing about a life I didn’t wish I have but is undoubtedly mine.

This is not a testament to the love I have received. You all know who you are and what you do. This is a testament to the fact that even with all this, the pain makes me see and magnifies otherwise. Yes, I know that’s what is happening but it does not give me an ounce of strength to fight that pull. Something that feels as comforting as when the waves pull at the back of your feet.

Pain demands to be felt. And I am feeling it in all its glory right now.

Getty Images: tommaso79

Originally published: October 21, 2019
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