Mornings are hard. When you think of Sundays, you imagine sleeping in, waking up to the sun gently finding its way to you. You picture sitting up, stretching, and taking a moment to admire the open window letting in hints of a beautiful day.
The reality is you wake up in pain. And you’ve probably already woken up several times through the night, but you’re hurting too much to fall back asleep. The sun is up now, so you may as well get out of bed. Lying there hurts. It isn’t this relaxing thing where you can sprawl out in bed and feel like you’re floating on a cloud, melting into your mattress. No, you have to move, because one position makes your tailbone numb, another hurts your collarbone, and lying on your stomach makes your back feel broken.
So, you get up, and almost everything pops back into place. Almost. Your left hand and lips are tingling and numb, but it only lasts a few minutes. You walk to the bathroom, gripping anything for support so you don’t fall. Even sitting down is painful, and reaching to wipe is excruciating. It’s demoralizing, and just the thought of the future, wondering if you’ll need help wiping your own ass one day, breaks you. As much as you want to crawl back into bed and curl up with your significant other, you quietly leave the room, trying to find something to do to walk off the pain from sleeping.
Your head is pounding, and you feel nauseous, like you’re hungover. As you make your way to the kitchen, everything starts to fade, and your vision goes dark. Your body feels fuzzy, going numb, just like before you pass out. You don’t usually fully pass out, though, so you push through, knowing it will pass. You’ve smiled and held conversations while on the brink of passing out, because this is your norm.
When the pain levels are high, your morale is low. Your dreams and ambitions get pushed to the back burner. Sometimes, they’re tucked away in Tupperware, forgotten and decaying in the back of your mind, hidden behind everything else. Sometimes, even the sunshine creeping through the window feels so far away. But you push through. You hold onto the idea of your next good day, whenever that may come. You find hope in new remedies, in any way you can take control of your health. You find hope in the people who support you, in your loved ones.
*On the pain scale of 1-10, I’ve never been under a 5. My 1 is a 5. I’m not looking for sympathy, but I want to be honest about how I feel instead of hiding behind the autopilot response of “I’m fine.” I want to raise awareness for people like me, so they don’t feel alone. And for those without chronic pain, so they can understand their loved ones or friends. We live in a world where we’re taught to suck it up and smile through the pain. We’re suppressed, depressed, with bottled-up souls. That isn’t right. Be real, and let others be real, so they don’t feel lost and alone.
Describes my every day. It is sad that we who have such complicated issues with Incurable Diseases and the pain that stems from them, qnd now know We will never get the relief We so desperately need in this climate where Lawmakers are taking away the very medications that are needed.
My life is forever changed, and is barely worth living. This is driving so many to suicidal thoughts, and far too many have already done this.
I believe their is no going back and that terrifies me to the core of my being. As for me, I have many decisions to make.
I agree with everything you said. I’m at the same point. I’m not enjoying even a little of life, and I’m only a little less than 1/2 my meds taken away. I will see you in heaven unless by a miracle they start treating us chronic pain patients properly.
Wow, I’ve never read something and literally knew what the next sentence would say because it’s the life I live every day. Thank you for writing this!
I am so sorry for all your pain. I wish I could help. Sending prayers to all of you.
You have described my life perfectly. Thank you for validating it! I am so sorry so many of us struggle with these kinds of horrible health issues.