My mom recently told me to be brave. So I guess I gonna be brave once more and tell you guys about my situation. I am currently lying on my bed with my head rotated down to the floor like 90 degrees. I have to do this to get rid of phantosmia seizures. The phantosmia is following me around since >10 years, for almost every day.
Phantosmia means that you smell horrible, unreal smells. Remember the joker movie, where he has no control over his laughing? Thats me but I have it with smelling. The wrong smelling is so bad that it completely drowns you. During such a seizure you cannot think a clear thought and every word you say also unleashes more horrible smells in your nose, that only yourself can notice. So the only thing that you wanna do is to stop talking, hide in your room and lie down.
During good days I can get the seizures away in a couple seconds or minutes, during bad days I need to lie down 30 minutes, again and again and during horrible days I have to stay in the bed for the whole day. Every day when I wake up can be such a horrible day, I only know it when the seizures begin. So I cannot plan anything in my life and constantly need to shift everything I do. Every action that I take can be broken by a seizure and i am not allowed to feel anticipation for anything, as the phantosmia likely is gonna take it away from me.
The phantosmia seizure just starts whenever it likes to, but it also can be triggered by certain head movements, breathing, talking, singing, coughing, sneezing, smelling strong smells and smelling smoke.
And don't get me started about eating food, I have to wear a nose clip, like some sweaty swimmer, so that the food doesn't taste weird as if it grew at the other dimension of Stranger Things.
But when I go out into society, people think that I am just a "normal", healthy person. From the outside I just don't look like the ticking time bomb I am. And I cannot expect any help from people, as there isn't any way to help. People cannot picture how disabling Phantosmia really is and not being able to help makes them uneasy, so they rather distract themselves with something else.
So I prefer to just stay in my room and work on something.
Couple years ago, during the Covid plandemic, I switched from a day job to full self employment. My hope was that a less stressful environment would help me to become healthy and I always wanted to be self employed anyway. Sadly neither the more peaceful environment, nor countless other healing attempts have solved the phantosmia, instead it got worse as time moved on.
In this time most projects involving other human beings, went as you might expect. Todays humans want to set their deadlines, however they want, whenever they want. Either because of their own narcism, or because they don't have the backbone to face the investors with reality. Whatever it is, they don't respect your limitations and working your ass of is not good enough, they wanna have full control over you. At the very end you are just a resource to them, a tame workhorse or just another roadblock in their way.
So I never made enough money to balance out the costs of living in a first world bureaucracy and I lived from my savings from my previous employments and still am living from those savings.
Even though I am ill - disabled if you ask me - I don't take any money from the state - as it imho is stolen money. Instead people who think that I am worthy to live can voluntarily donate for my open source web development work (nitropage.com) or team up with me - if they have the necessary patience with me and my nose.
My vision behind Nitropage is to create a fully open source, self-hosted visual website builder featuring 80-90% of the functionality needed for single person - small business websites. The goal isn't to have all features one can think of, but to have all essentials without installing countless plugins as in e.g Wordpress. My dream is that it will even have a built-in shop accepting crypto-currencies by default, so that anyone can start a small business, without relying on any other business - except maybe their hoster, if they don't wanna self host it 😉.
I thought about this for a very long time, and the recent battles in the Wordpress ecosystem confirmed my feelings. So one key difference between Nitropage and many other CMS's is that Nitropage never will have an official hosting service. That is because such a service creates a business incentive to snarl the self-hostability and to lock away features behind a premium plan.
Same goes for plugins, Nitropage will not have them. All features must go directly into the core. If the Nitropage Shop ever will become reality, it wont follow Automattics WooCommerce business strategy to convert foss users into paying, locked-in customers. Instead it will be a core feature of Nitropage, for everybody. Nitropage shall not only be an anchor for freedom of speech, but also for the freedom to grow.
But all of this is mostly a dream and as it is looking right now it wont happen in this era. Not only do most humans - sadly including freedom activists - rather give their money to non-foss companies like Wix, Squarespace or e.g. OnePage, than to an ill little human with a dream, but they are even too lazy to click on the damned like button.
I can dream of a bridge and build it, but I cannot build it out of thin air and my own brick reserve is depleting quickly. If you are reading this and wanna be part of the dream, atleast consider boosting. Thank you for reading all of this!
I gonna stand up now and check if my phantosmia seizure is over or if I have to stay in the bed again for another day.
See ya and keep building your dreams 🙋♀️! Oh and when you eat your next pizza, enjoy every single bite of it, don't take it as granted!
