Long Covid Diaries: THE KIP (Weeks Five and Six on LDN)

Quick recap for anyone just joining: LDN stands for Low-Dose Naltrexone — naltrexone is normally used at 50mg for addiction treatment, but at tiny doses (0.5–4.5mg) it appears to modulate the immune system and restore function to natural killer (NK) cells. Mine are at 3% of normal levels with multiple viral reactivations after COVID wrecked my immune system. I’ve been doing ultra-conservative dosing, starting at 1/12 of a 4.5mg capsule and slowly increasing. Week one brought restorative sleep and visual dreams despite complete aphantasia. Week two continued with crash-free days. Week three, I found my new boundaries. Week four brought the realization that sleep IS the work, not rest from the work. Now I’m up to 1/7th of 4.5mg daily, and the sleeping continues.

The past two weeks have been a blur, a haze, and a daze of sleeping. Of sleeping so much. So, so, so much. 12–16 hours per day. And then, spending the rest of the day feeling guilty for being so useless and sleeping the day away.

The Voice in the Marrow

It has made me think so much about the fake premise of mandatory productivity as a measurement of any human worth. And fuck that shit, I hate that capitalistic mindset that has seeped into my bones, in my marrow, into my hair follicles. It’s everywhere. The little, stupid voice that extremely loudly says that sleeping is being lazy.

Despite my always having a reply that sleep is my only job now, if that’s what my body now needs, then sleep it gets. The voice doesn’t care about my rational arguments. It doesn’t care that I’ve already figured this out, that I had that big clarity moment in week four. The programming runs deeper than reason. It’s literally like it’s living in the marrow. It’s everywhere. And I have to fight it every single day.

What “Getting Better” Actually Looks Like

I’m improving. But the improvement is not one that makes sense when I’m trying to explain it to anyone. The improvement isn’t linear, and it’s unpredictable. Usually, people assume that when someone is “getting better,” that means the said someone is almost back to normal or getting back to normal — whatever that NORMAL ever meant to them. That is not my case. The improvements are random and vary from day to day.

The Hip Joint Pain

The biggest and most notable improvement is the hip joint pain that was UNBEARABLE and ever-present and only getting worse after each crash — that has gone down a few percentage points. It’s still there. But on the good days, it’s no longer at 70%, it’s closer to 55%.

That doesn’t sound like much, does it? Fifteen percentage points on a pain scale that still leaves me at 55% daily pain. But when you’ve been living at 70% baseline on the BEST days with spikes to 90–100% during crashes, and the trajectory was only going UP, losing fifteen points feels massive. It feels like I’ve been given something back.

No Longer Getting Worse

The second most notable thing is that I’m no longer getting worse all the time. Because it was my reality for the last year. Each week meant I was getting weaker, I was getting new pains and aches, and I was able to do even less than before. The decline had a momentum. A velocity. Every week was measurably worse than the week before. And now it’s not. That’s not nothing. That’s not “barely an improvement.” That’s the difference between a car accelerating toward a cliff and a car that’s managed to brake. I’m still pointed toward the cliff, maybe. I’m still damaged. But I’m no longer actively accelerating toward total collapse. A slow downhill roll instead of flying off in full speed, that is where I’m now.

Pacing That Actually Works

The third improvement is — I’m able to pace better. I don’t know how to explain it rationally. I know what pacing is, and I knew what pacing is, and I did my best, but I still failed miserably. Every day. I failed at pacing every day. Now? It’s easier. My best guess is it’s a mix of slight cognitive improvement and a slightly improved physical condition. I can think better, I can reason better, and therefore I can make better decisions, and my body responds to those decisions in a more predictable way.

Before, it was like trying to drive a car with a 6-hour delay between pressing the gas pedal and the car actually accelerating. By the time I realized I’d overdone it, I was already deep into a crash. The cause-and-effect relationship was so delayed and unpredictable that pacing felt impossible. Now the delay is shorter. The feedback loop is tighter. I can feel when I’m approaching my limit before I blow past it. My body’s signals are clearer, or maybe I’m just capable of hearing them again. Not always, though. But often enough for it to matter and make a difference in my everyday life.

What’s Next

Next up, I’m upping my LDN to 1/6 of 4.5mg. That will happen sometime next week.

Honestly? LDN so far has been THE BEST (and the only) treatment that has changed and improved anything in how I feel and how I function. Not the antivirals. Not the supplements. Not the specialists who shrugged and said, “we don’t know what to do.” Not the doctor who suggested it was anxiety or depression despite the objective immune destruction. LDN. This weird, off-label, ultra-low-dose medication that I had to source myself because doctors looked at me like I was drug-seeking for asking about an anti-addiction medication. That’s what’s working. Weird, I know. Makes no sense, I know.

The Sleep Continues

I’m still sleeping 12–16 hours a day. I’m still fighting the voice that says I’m lazy. I’m still doing the only job that matters — giving my body what it needs to attempt this unprecedented repair work. Unprecedented for this particular body, at least.

The improvements are small. They’re non-linear. They don’t make sense to people who expect “getting better” to look like a steady march back to normal. But they’re real. And I’ll take them.

More updates coming as the slow work continues. Spoiler, I guess: I’m still not cured, and I’m still fighting capitalist brainworms about fucking dumb and fake productivity.