You’re lying there and a slow awareness slips in. That pit has enveloped you again. It’s not comfortable here. Nor is it restful. Or healing. At all. This is not that delicious place where you want to stretch and linger as the new morning dawns.
This is the sleep of my Lupus.
It’s a deep, dark, destructive vacuum that weakens as it sucks you in. You don’t feel yourself slipping into this place, it just happens. You awaken to its grip and you immediately want out. You just want to fight your way out. Again.
As consciousness continues to seep into this dark, hollow place, you know you need to open your eyes. Usually this is just a natural part of the morning for most of us, but not for this sleep. Your eyes literally won’t open. It’s like they’re just calmly pressed together with a bizarre, muscular intention.
As you lie there willing your lids to just separate already, you realize that your tongue is stuck to the roof of your mouth. That same intentional “stuckness” that has your eyelids under siege also has pressed your tongue tightly against your palate. Your lips are closed, your jaw is not clenched, yet your tongue is literally stuck there in that place.
Now you know you need to climb out of this place. You’ve been here before. You have to pull yourself back into the reality of a new day.
So you shift positions. Or at least try to. This sleep always leaves you with that ugly, ugly stiffness. It’s as if this sleep doesn’t allow you to move all night, its grip holds you just that tightly.
But you move now, no matter how much it hurts. Because you know you have to. We’ve talked about this before. Just keep moving, Debi. Break free from this stronghold that hems you in.
So you will your eyelids to open. That’s literally what it takes. Just open. Please. You peel your tongue away to freedom. Ouch. And you force yourself to sit up on the side of the bed.
There. You did it. You’re vertical. You’ve escaped.
But honestly, you feel worse than you did when you collapsed into bed last night. This sleep doesn’t seem to help anything. In fact, its vacuum actually feels like it sucks more precious strength away from you.
As you begin to function, you try to just move forward and embrace the newness of another chance at a brand new day. What a beautiful gift.
But that sleep won’t leave your mind – it leaves a persistent soreness behind as a reminder. Your mouth feels like it’s been burned because of the peeling away of your tongue. Your eyelids have a throb to them from their long night of pressing. And those joints. Ugh.
I wouldn’t say that this sleep is actually frightening, but it’s definitely disturbing. Sobering. And exhausting. It’s all so incredibly exhausting. And weird.
I admit it … this sleep is just weird.
But so is Lupus. It affects every patient differently. It does what it wants, when it wants, how it wants. This is just one of the ways it likes to pick on me.
I don’t always have this sleep, but I’ve learned that when it happens, I am not heading to a pretty place. Time to rev up the steroids and seriously tone down those expectations. Again.
Just tone everything down, Debi.
I do have my good days and my restful sleeps, but this has been my reality for the last three nights. My mouth now feels like I not only burned my tongue on hot coffee, but I also ate an entire box of Cap’n Crunch, as well.
My fellow cereal lovers out there will know exactly what I mean by that.
I think it’s important to share what we’re going through in this life. Not as a whine or a groan, but to encourage openness. I believe we all struggle alone far too often. We look at each other and we only show our normalness.
As a society we’ve crippled ourselves emotionally because we don’t expose our weaknesses.
Or our weirdnesses.
We just cover them up and smile for that darn camera.
One thing I’m learning through the feedback I receive from “Growing Nurse Debi” is that very few of us are actually okay. I so appreciate the openness of those who have shared with me along this journey. Their encouragement compels me to press forward and keep writing.
My point with all of this is that, even if we won’t allow others to see our not okay-ness, God sees it. He’s always there in the midst of it all. Even when we deny his existence. Or think we take even a breath without Him. It doesn’t matter. He’s still there. Supplying every molecule of oxygen we inhale.
He sees our silent anxieties. Our fears, our anger, that perpetual self-destructiveness that slowly eats away at us. All those worries. He’s there in them all, working it all out according to His perfect will. For our ultimate good and His magnificent glory.
My prayer for tonight is that every beautiful person reading these words will lay their burdens confidently at the feet of Jesus. Whatever it is, he can handle it, my friends.
And then let’s all climb into our soft, lovely beds and drift into the sweetest, most refreshing sleep imaginable. And let’s do this knowing we’re loved, understood, and absolutely held through it all.
Thanks for growing with me. ❤
“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.’” (2 Corinthians 12:9-10)