It’s Monday morning and I’m sitting here trying to put words to a body that doesn’t make sense.
Saturday I spent the entire day in bed.
In a caring way, my husband was trying to understand what was wrong with me… why I was lying there instead of “getting up and doing.” He finally said, “So… like the flu but not so bad?”
In that moment, a wave of hopelessness hit. I had no idea how to explain it in a way that would land.
The flu is sickness.
Chronic pain is malfunction.
The flu makes a person feel miserable, but the body still basically works. It’s fighting something off and then it passes.
Chronic pain is my nervous system and muscles firing pain signals even when I’m not “sick”… and it doesn’t turn off. Rest doesn’t reset it.
On a flu day, the body hurts but it can usually still shift positions, get up, shower, walk to the kitchen, do the basic stuff.
On my bad days, moving feels like my body is made of bruises and glass. My side pain can make breathing, twisting, bending, even sitting feel impossible. It’s not drama. It’s limitation.
I’m not catching a virus. It’s more like driving a truck with a constant engine warning light and a busted suspension. Some days it runs. Some days it absolutely doesn’t. And even when it runs, it costs more effort than it should.
When someone asks, “What hurts?” I freeze, because it’s not one spot. It’s like my whole body hurts, and my side pain is just the loudest one screaming. I’m not trying to be vague. It’s just not a simple injury I can point at and say, “There. Right there.”
I get why people want a label. Labels feel safe. But calling it the flu minimizes it. The closest thing I have is this: it’s a flare day.
On flare days, the goal isn’t to push through. The goal is to not make tomorrow worse. And on those days, I’m quietly whispering, “Lord, give me enough strength for this hour, not the whole week. Just this next step.”
—
Today, I don’t even know where to begin.
Everyone tries, but it feels like no one can truly understand unless they live this life every single day.
I am tired. So exhausted. So done.
The Christmas tree is up. The house is festive. It looks like Christmas, but the Christmas spirit isn’t there. It feels like one thing after another and another and another, a never-ending loop of appointments and pain and responsibilities.
Part of me feels guilty that I’m not “merry and bright,” but another part of me knows God sees past the decorations and straight into the heaviness in my chest. He’s not fooled by the twinkle lights; He’s not disappointed in me because I’m struggling. He already knows.
I catch myself pacing the house in the same little figure eight I always walk, trying to distract myself from the pain, trying to figure out where to even start. Dishes? Laundry? Sit? Lie down? There is no “right” choice because everything hurts.
For the longest time, this side pain was on and off. Intermittent. Annoying but survivable. For the last several days, it hasn’t let up at all. Sometimes it shoots through me so sharply that it stops me in my tracks and pulls a yell out of me before I can even think.
Yesterday at my girls’ wrestling meet, the matches were back-to-back. I was literally running from one corner of the gym to the opposite corner, trying to be everywhere at once. My body was screaming. But I can’t just stop. I still have kids to take care of. I still have to show up. I still have to do all the things.
Somewhere in the middle of the chaos, I found myself praying under my breath between matches: “God, please just get me through this next one. Help me be present for them, even if my body is falling apart.” It wasn’t a fancy prayer, just a desperate one. But I believe He heard it.
I’m not writing this for pity or attention. I just need somewhere for these words to go besides circling in my own head; somewhere I can lay them down before God and say, “Here. This is what it feels like. I don’t know what to do with it, but You do.”
—
Last night, scrolling on my phone, I stumbled on an old post I’d made in a support group about my abdominal pain. Ironically, this isn’t the first time vascular issues have brushed up against my story. Buried in the comments was a question: had I ever been checked for abdominal vascular complications? Then a list: MALS, SMAS, Nutcracker, May-Thurner.
Back then, those words meant nothing to me. I brushed it off because it felt too “out there,” and I was already being bounced between specialists. Seeing that comment again now, when people are finally talking about my vascular system, felt like tripping over a breadcrumb I’d dropped years ago without realizing it.
Part of me wonders if that was one of those tiny nudges from God that I just wasn’t ready to see yet. Maybe He’s been weaving things together quietly in the background while I’ve been begging for loud, clear answers in the foreground.
On Thursday, they are doing a venogram, actually going in and looking at my veins and blood flow.
I am really scared.
My veins have proven, over and over, how delicate they are. Every IV that blew, every line that wouldn’t thread, every time someone struggled to get access has taught me that my vessels do not cooperate easily. So this isn’t “just another test.” The idea of threading catheters through veins that already feel fragile makes my stomach drop.
I’m scared of the procedure.
I’m scared of what it might show.
I’m scared of what it might not show.
And still, there’s this stubborn piece of hope that maybe this is part of the puzzle; that random comment from years ago circling back at exactly this moment isn’t random at all, but one more reminder that God sees the whole map when I only see one painful mile at a time.
So I keep praying: “Lord, go before me into that procedure room. Guide every hand, every decision. Protect my body. Use this somehow for clarity, not more confusion.”
—
Finally, there’s January.
In the second week of January, my husband and I will travel out of state to see a neuromuscular specialist. That appointment has been on the calendar for nine months. Nine months of waiting, wondering, letting little hopes grow and then trying to shrink them back down so they don’t hurt as much if things don’t go the way I want.
I feel a huge pressure not to waste it.
I’ve been gathering records, timelines, photos, test results; trying to turn chaos into something a stranger can follow. I want to walk in with a clear picture, not a jumble of “I don’t knows.” I want to make it easier for this doctor to see the pattern I feel trapped inside of, without looking like I’m trying to do his job or step on his ego.
I pray he has an open mind.
I pray he listens with curiosity instead of defensiveness.
I pray that even if it isn’t what I think it might be, he helps find that last missing puzzle piece so we can finally move from chasing answers to chasing relief. Healing. Life.
And under all of that, I’m praying something even deeper:
“God, don’t let my hope rest in this one doctor or this one test. Let my hope rest in You. Use them, yes. But hold me whether this appointment brings big answers, small ones, or more waiting.”
I don’t know what the venogram will show.
I don’t know what January will bring.
Right now I feel anxious, hopeful, scared, numb, and weirdly calm all at once.
What I do know is this:
I am tired of surviving my own body.
I am tired of living at the mercy of flare days.
I am tired of explaining pain that has no easy metaphor.
But I’m not done fighting for a life that’s more than just enduring. And I’m not fighting alone.
God is still here in the quiet house, in the tired body, in the ache and the waiting and the unknowns. He’s here in the whispered prayers, the tears I don’t have words for, and the small, stubborn hope that hasn’t died yet.
This morning, this is what I have: a quiet house, a tired body, and these words on a page laid down before the One who already knows them all.
For today, that has to be enough.
