09/08/2026
I'm done... I'm done with this body and this life!
I have been going through repeated seizures for hours and hours with no signs of it ending. Calling an ambulance is just going to make the pieces of s**t at queensland health lock myself up in the nutter ward anyway.
Okay... so for those of you still reading? Glutamine turns into glutamate and then into GABA. You are a real one if you know what I'm about to type next! Glutamine is necessary to calm my bowels due to the ulcerative colitis from the HPS3. That glutamine turns into glutamate which 'excites' the brain, GABA is the brakes that arrest glutamate and keep everything in balance. The cerebellar atrophy is causing a shrinkage of my purkinje cells. The only cells in the body that produce GABA and supplementation hardly crosses the blood brain barrier...
I'm fu**ed... there is no way to solve the cerebellar atrophy, particularly since at least two of my diseases cause it to shrink. If I stop taking my glutamine it is sheer hell on earth and means I struggle to take up any nutrients.
I'm supplementing with GABA and glutamine but there is realistically nothing more I can do. The refuse to acknowledge any of my diseases since they are so incredibly rare despite massive, overwhelming evidence because I cannot convince any doctors to pull their head out of their arse and to listen to a highly trained patient.
It's hour by hour, day by day at the moment. There is no going back, this is neurologically progressive. This is life limiting and I genuinely think that since I'm not eligible for assisted dying that I'll be forced to su***de. I'm ready to go now but at what point is enough genuinely enough?