4 Apr 2026
Symptoms are not identity. Illness is a condition, not a personality. I am always working on my ‘non-illness anchors’ - parts of life that have nothing to do with the illness. Not as escape. As structure. - a small routine that includes daylight - a skill - a relationship - even taste, humor, curiosity… If everything in your life references the illness, it becomes your personality by default.
2 Mar 2026
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2 Mar 2026
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2 Mar 2026
You interrupt the pattern. You talk to a stranger. You taste something new. You ask one curious question instead of rehearsing one bitter thought. And the nervous system recalculates. The body might still hurt. But the mind is no longer trapped in the same narrow corridor.
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.
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.
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