2 Mar 2026

(no text)

2 Mar 2026

Imagine waking up and before you even sit up placing your legs straight into a bonfire. Not normal fire, an ice-cold fire. Burning and freezing at the same time. A sensation so extreme it doesn’t fit any word I know And it begins the minute you wake up. It stays until the minute you fall asleep. That is today 🤯😤🫣😓😡 I’m 22 years into PPMS. I can’t think my way out of this. But I can watch what it does inside me. The pain rises, the nervous system goes on alert. And the mind starts searching. It looks for someone to blame. It pulls toward anger about everyone. It builds arguments that feel justified. I see the waves clearly. Years ago I would have followed them. Said sharp things. Damaged relationships. I trained myself not to. Now I can feel rage move through me without turning it into a war outside. I can speak normally. Even smile. Even joke. That part took years. Today I carried this body into the gym. It was mission impossible. Trained the muscles that still work. Movement increases blood flow. Oxygen to the brain. Endorphins released. Natural painkillers. They help. Those are the only painkillers I can afford. Prescription neurological pain meds weaken me. They are anti-epileptic drugs. For me, the side effects are too extreme. Weed reduces the pain. But it weakens my muscles. And I need those muscles, I need to stand for a few seconds. Transfer. Walk from the sofa to the bathroom with the walker. If I sedate the pain, I lose function. So I don’t. Right now I’m on the sofa. Feet pressed against a fresh extremely hot water bottle. The heat overrides the ice fire pain. For a while, the signals quiet down. That is where I am today.

2 Mar 2026

📞We were on the phone and he said ‘Bro my life is so boring lately’ A quiet boring day is life not fighting you That is rare We keep waiting for fireworks like idiots Meanwhile the miracle is sitting on the couch in sweatpants doing absolutely nothing dramatic Notice it It took the universe a lot of restraint to give you this.

1 Mar 2026

You didn’t choose your disease. You didn’t design the damage. But every day, your nervous system is learning from how you respond to it. It can organize around constant threat - or around small moments of safety. Around fear - or around practice.

1 Mar 2026

You can understand yourself to death You can map every wound, name every pattern, quote every podcast But if you don’t move differently tomorrow, it is just a very smart way of standing still.