I’ve hoped for so long to discover that diagnosis that explains it all. For so long that I had given up on ever finding one. I stopped the pleading doctors’ visits, the experimental treatments, the layman’s medical research; I accepted that I was sick and modern medicine couldn’t yet name my culprit.
The closest explanation I ever got that made sense to me was my once-primary who described my body as a generator. She said that it all works together, and when one part fails it puts extra stress on other parts until they too fail. That we were constantly trying to repair broken parts but that we just couldn’t keep up with it. She said my body was breaking down to a point that we really needed to take me completely apart to find all the broken pieces and repair them all at once, which we obviously can’t do to a living body.
But when a new psychiatrist began treating me in 2024, all of me began to slowly improve. I never returned to full service, but my body became manageable. I assumed getting my mental health under control allowed other parts to ease up and begin to self-repair. The only lingering problem neither self-repairing nor responding to medication was my sleep. I had begun sleeping 18-20 hours a day; I was sleeping my life away. But when I was awake I was pretty okay. Then over the last 6-8 weeks I began barely sleeping again and all those previous undiagnosable symptoms were dominating my body. I’m exhausted, but I barely sleep because my mind won’t stop ruminating. I’m in so much pain that I’m back to spending hours at a time soaking in the hot tub, trying for any relief. Brain fog. Heart racing. Muscles too weak to support me. Weight gain. Intrusive thoughts. ARFID keeping me from barely eating at all, which I vomit entirely nightly. Diarrhea. Freezing all the time. Seizures. Migraines. Moodiness and a short fuse. Suicidal ideation. Hopelessness. Why? Well, we had been weaning me off af one of my psychiatric medicines that causes drowsiness to see if that was the cause of my bedridden state. It was! But it also was keeping my entire nervous system in check.
Riluzol is an ASL medicine that is used in psychiatry for a handful of treatment resistant conditions – all of which I have. I didn’t realize it, but my psychiatrist has been managing my nervous system on top of everything else. I was in Prolonged Dorsal Vagal Shutdown for years, and it was slowly shutting all of me down. Now I’m there again. But now we know what exactly is happening and the next step is to find a medication, or at least a dosage, that treats my nervous system and stops irreparable harm to what can be repaired (unlike the somatic conditions we do medicate because those parts of the generator broke beyond repair) and also doesn’t force me to sleep my life away.
thebadgerspath.com 