I wake just after midnight not because I want to, but because I have to. Because my body is forcing me out of my slumber. There is an ache in my back. A dull, consistent throb, and while this pain is nothing new — it has woken me most nights since my fifteenth birthday, since I endured an eight-hour operation which fused and bonded the lumbar region of my spine — knowledge doesn’t make it any easier.
Familiarity does not make it any better. And, it definitely does not make me more rested.
My discomfort doesn’t stop there. I have swelling near my hips and inflammation throughout my abdomen: from my stomach to my ribs to my butt and through my waist. My joints pop. My legs twinge. They tense and cramp and quiver unconsciously. The spasms are beyond my control.
I shift my body, turning from my right side to my left — trying to find comfort. Trying to find relief. I roll onto my stomach. I toss a pillow beneath my legs and flip onto my back but nothing happens. There is no change. There is no difference. There is no reprieve, respite, or relief and so, after a few minutes, I get up (as I always do) and shuffle from my bedroom to the kitchen.
I search for pain pills and anti-inflammatories in the dark.
And then I head back to bed, hoping I get just enough comfort to sleep. To make it through the night. And usually I do, but then I wake and the cycle starts all over again.
I shift. I stretch. I take pills. Rinse and fucking repeat.
This is life with a chronic condition: it is a constant struggle, an uphill battle. I fight every day for small victories and little relief, but the pain is only one small aspect of my ailment. It is only one small part of me because “the pain” causes many more problems. The constant pain doesn’t just affect me physically. It affects me mentally, emotionally, and socially too.
It affects each and every part of my life.
You see, my pain often makes it difficult to concentrate — sometimes I stare at my email for hours trying to make sense of the words. Trying to “get it” or to understand. My pain makes it difficult to do little things, or to enjoy any thing. I cannot tell you how many dances I’ve missed with my daughter or how many intimate moments I’ve skipped out on with my husband. I cannot tell you how many days I’ve spent lying down, or nights I’ve spent wide awake, unable to sleep. And — when the pain is bad enough — I cannot cook. I cannot eat. I cannot clean, and I cannot bear to sit or stand.
Living like this is really fucking hard.
My pain also makes me miss opportunities, and forces me to cancel plans. My friends think I am lazy or dramatic. Like many who struggle with a chronic condition, I have a reputation of being aloof and a flake. My pain forces me into taking medications which upset my stomach, and to spend money on doctors and therapies which only help me a little bit. Which bring me only moderate, unsustained relief.
And sometimes my pain forces me to parent “from the bed.” I lay down with an ice pack while my daughter plays Mommy or colors or watches cartoons.
And that pain? The pain of knowing I am living half a life? Of knowing I am missing out? That pain is far greater than what I feel in my back. That is the toughest pill to swallow.
It is deeper and darker and more insidious, and it fuels my depression.
Of course, the correlation between pain and mental illness is well-studied. According to the American Pain Foundation, “32 million people in the U.S….have had [chronic] pain, [pain] lasting longer than a year….[and anywhere] from one-quarter to more than half of the population that complains of pain to their doctors [is also]depressed.” Furthermore, 65% of depressed people complain of pain.
What does this mean for me? Well, it means that my mind and body are locked into a vicious cycle. A cycle of sadness, confusion, desperation, desolation, and pain.
And while I could give up, I don’t. Everyday I don’t because I want to fight. Because I have to fight. Because I am worth the fight, and you are too.
If you are struggling, know that you are worth it. I see you. I don’t think you’re dramatic or flaky, and you’re definitely not alone.