Right now, I’m writing this from bed. Again. The same spot I’ve been in for most of the last month… the place where time blurs and the ceiling starts to feel like a timeline. I don’t even know how to explain what it does to a person when “rest” stops being a choice and turns into a requirement. When you’re not lying down because you want to… you’re lying down because your body has shut the door on the day and you don’t get a key. There are mornings I open my eyes and it feels like I never actually made it back from yesterday… like my body hit “pause” and forgot how to press play.
This fatigue isn’t sleepy. It’s not “I didn’t get enough hours.” It’s the exhaustion that makes basic life feel too loud. Like every task has a price tag and I’m always over-drafted. Showering. Standing at the stove. Folding laundry. Driving to an appointment. Smiling on command. Even answering “How are you?” with something that won’t make the room go quiet. It’s a constant calculation… what can I do today without paying for it tomorrow… and what happens when tomorrow comes anyway, ready to collect.
And everything hurts. Not always in a dramatic, convincing-from-the-outside way, either. Sometimes it’s a steady ache under my skin… like background noise I can’t turn off. Sometimes it’s sharp and specific… nerve pain, deep abdominal pain, pain around my tube site that turns coughing and bending and laughing into a gamble. My body doesn’t just hurt… it interrupts. It pulls me out of moments mid-sentence, mid-laugh, mid-mom. It steals my attention. It makes me move like I’m walking through a house full of tripwires… careful, tense, always bracing for the wrong step.
People hear “chronic illness” and think it means I’m sick a lot… like the flu that never fully leaves. But for me, it’s more like my entire system misfires in real time. I can sit up and my heart bolts like it’s trying to outrun something. I can stand and the room can narrow… ears ringing, vision swimming, nausea rising like a wave. Heat can flatten me. A short walk can feel like I’m carrying a weight nobody else can see. The parts of me that are supposed to run quietly in the background don’t… they glitch, they spike, they crash, and I’m the one stuck living inside the unpredictability, trying to act normal while my body does the opposite.
And then there’s my gut… the part of my life that is both my reality and the thing people don’t know how to hear. Gastroparesis isn’t a quirky diagnosis… it’s a daily problem with real consequences. It’s nutrition and nausea and pain and a body that won’t reliably accept what it needs. Having a feeding tube isn’t just “medical equipment.” It’s a lifeline that tastes like loss. It’s survival with a constant reminder attached to it… supplies and sites and flare-ups and the mental load of keeping myself alive in a way I never imagined I’d have to. Something as basic as eating… something that’s supposed to be natural and simple… became complicated and painful and clinical, and I’m still grieving that even when I don’t say it out loud.
The part I don’t talk about enough is what this does to my mind… not because I’m ashamed, but because I’m tired of having to prove I’m not making it up. Tired of doctors, systems, and sometimes even well-meaning people looking at me like the problem is my attitude instead of my body. I’m not “just depressed.” I’m not lying here because I don’t want to take part in my life. I’m lying here because I can’t… and there’s a difference that matters. Some days my brain feels swollen with fog… like I can’t hold a thought long enough to finish it. Some nights my mind won’t stop scanning the future like it’s trying to find the moment everything falls apart. And yes, I’m sad sometimes… of course I am. Grief happens when your life gets smaller without your permission. When you miss your own children while you’re still in the same house as them. When you hear them laughing in another room and you want to be in the middle of it… but your body says no.
My body says no… and that sentence alone can take the air out of me. No to plans. No to consistency. No to the mom I was before. No to the version of me that could wake up and just… move through a day without negotiating for it. The guilt is brutal, and it’s sneaky. It whispers that everyone would have it easier if I were easier. It turns me into someone who apologizes for being sick, for needing help, for not answering messages, for not being fun, for not being productive, for not being “back to normal.” Normal isn’t waiting for me. Normal left quietly a long time ago, and I’m still standing in the doorway like it might come back if I just hold my breath long enough.
And I still show up… in whatever scraps I can. Sometimes that looks like getting the kids out the door and then crawling back into bed like I ran a marathon. Sometimes it’s making it to an appointment with my hair thrown up and my heart racing… hope folded up small, like I’m trying not to crease it any further. Sometimes it’s just making it through the day without falling apart in front of everyone… saving the collapse for when the house goes quiet. There’s a specific kind of loneliness that comes with being surrounded by people you love and still feeling like you’re doing this alone… because no one else can feel what you feel in your body.
I wish I could end this with something tidy… a lesson, a silver lining, a “but I’m okay.” I’m not there. I’m still in the middle of it, still lying here, still hurting, still trying to figure out how to live inside a body that doesn’t cooperate. I can’t even picture what the next stretch looks like… I only know I’m tired of being brave, tired of explaining, tired of carrying this quietly… and I’m scared that this is just my life now.
#MomWithATube
