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 πŸ˜‰.

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 πŸ™‹β€β™€οΈ! Oh and when you eat your next pizza, enjoy every single bite of it, don't take it as granted!

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Discussion

Wow thanks for being brave and sharing, we share a similar build scope although I’m not looking into a visual editor aspect πŸ”₯ I’ll try to give nitropages a test early next week, see what you are cooking in the digital realm 🫢 hope today’s seizure takes it easy on you 🧑

That’s wild! Never heard of it until now. Have you figured out the cause or possible causes? I imagine you’ve been to all the specialists by now? I’m really curious why head down position helps … blood flow related?

It reminds me a bit of synesthesia

I wonder if I would prefer synesthesia over the phantosmia - what if my preferred music results in really bad colors πŸ˜‚?

I had a friend with lexical-gustatory synesthesia - she could taste words

Well didn’t know that was a possibility, that is fairly wild

it is wild! I was a bit envious

Keep being brave and follow your path. The world needs you.

Have you heard of be-bop ?

They are working on something close that might be of interest to you : https://be-bop.io/

Whew be-bop, I didn't know about that one! They really have a similar spirit it seems, I gotta check them out more closely πŸ‘Œ, this might be a great alternative for the time being until NP has a built-in shop πŸ˜ƒ.

Glad you find it interesting. They are one of the nice projecta I discovered thanks to free social platforms. I understood they are also building a nostr integration and you find them on Nostr :-)

Take as much from the state as you can, they print it for free

My dad just developed phantosmia about a year ago in his early 70s. It is very mild compared to what you describe, but he says he randomly smells something like asphalt. Have you considered trying lions mane and/or psilocybin microdosing? Both stimulate neurogenesis and neuroplasticity so it is quite possible that it could make a difference. A carnivore diet could also make a difference, cutting out every single thing you eat that could possibly be interfering with your cellular health.

DMT may also be helpful, it is well known to more intensely stimulate the parts of the brain that recall smells, the effect ... what is it called... where you hear smells and feel colors and this sort of thing... synaesthesia - this may help reset your wiring

also, for sure, examine what especially sugars and artificial sweeteners and similar you may be ingesting, these can cause bad things to happen to nerves in general, i developed chronic double vision from acesulfame-k and sucralose over a few years period on top of too much seed oil/starch/sugars with energy drinks for a decade prior to that... it has also diminished my ability to learn so what nostr:npub100rse6q23xxvfvlp05ye97shyexlrz8peqrtvrk4gsjw3dql26rqxu63y7 is saying about neuroplasticity definitely also applies to in general anything that interferes with nerve function... and in general, examine the health of your kidneys because this kind of jammed nervous system stuff can often have a connection to minerals being eliminated or excessively accumulated or one interfering with another

Perhaps she already tried that πŸ˜…

Sorry for fucking up your post, mea culpa for 1k.

And still, fuck that guy.

What did he do to you to deserve this? πŸ˜…πŸ™ˆ

Whackadoo horseshit, that's what.

ooh. I've never heard of this. I'm sorry

Also Nitropage sounds very cool. Zapped :)

thank you for taking the time, and the vulnerability, to share all this. I'm glad I followed you on my first day on Nostr.

my pet project - basically a documentation resource on how to self-host while lowkey homeless or nomadic - comes from a similar origin.

due to various factors I burned out of mainstream 9-5 software engineering about a decade ago, and eventually lost my home. it was only then I began to realize that I have sensory issues which prevent me from being able to work when I don't live alone or only with "compatible" people.

sharing a house with many sorts of normal people just living their lives, absolutely decimates my ability to concentrate, because I absolutely cannot stop processing the noise of them moving around, unless they have an activity pattern similar to what my parents had when I was growing up. there is no "tune it out" for me. I hear everything, all the time, in exquisite detail. once I was living in a basement for a while and I could tell you who did what in which bathroom of the house by the sound of the water in the pipes.

if I go too long without sensory downtime, I begin to develop temporary dementia-like symptoms. I lose the ability to think properly, to contain the necessary complexity in my head which is required to be a developer. if it continues, I start losing my ability to speak & write properly. and if the sensory overload still continues, eventually I will begin to hallucinate and I will shut down entirely.

as you relate with your condition, most people cannot understand and don't care to. I've lost good friends over this and I can't say I'll forgive them for it. I even spent a short time living outdoors this past summer because of it.

the part you mention about never being able to plan anything is so, so, so relatable. "why don't you just ____ and get paid," the "helpful" types ask. because I can never count on my brain functioning properly at any given point in the future, until I live someplace where I have control over my sensory input. even explaining that is useless, because people are unable to understand that when I'm in sensory burnout, my brain doesn't do the tasks but slower, it does the tasks *wrong*. I make mistakes. I fail to see obvious information. I read text off a page and what my brain interprets is not what the text says. no one can do "knowledge work" like this.

and so for about the past 5 years I've been on a mission to put in place the foundation of some kind of web development & hosting business, while spending as little money as possible to run it, and while not having a home to run it from, only a series of temporary places to stay. I'm building it in the hope I will eventually have space of my own (and thus control my sensory input) and can actually then make money off it, and also because I know even when I am healthy and living within my sensory means, 9-5 corporate work is a quick path to deep depression for me, and depression (for me) is an existential threat.

and so, Surfhosting was born.

just in the past 3 days I've finally got back to grinding on the website to get it launched, after 6 months disruption due to finding myself living outdoors and then moving across the country to my last-chance friend's couch.

anyway, like I said, thanks for sharing. being open like this is the only way such issues will ever be better understood by the ignorant masses who view us as "lesser than" because we don't fit the standard mold.

I can only give the thanks back to you and I hope you figure out a way to fight through these difficult times πŸ€—. Your project is very important in these times of growing centralization and infantilisation! It reminds me of one of my dreams to create local self-hosting & linux courses / coaching groups πŸ™‚.

How where your past couple days ☺️? Is the new website already online πŸ€“?

😊

I lost my productive streak after a while, so no website launch yet (working on integrating MkDocs-Material and Wordpress into something that looks coherent), but it feels really good to be working on it again.

there was a lot of activity where I'm staying, so after I could no longer focus, I took a couple days to do errands, bake bread, and make food for the freezer. I learned a while back that I can do such things when my mind is full of static, so I don't completely lose the time I'd have spent on development. and anyway I love to cook, so frequently it keeps me in a good mood.

I've had some optimistic moments lately, and the cool people I'm meeting here and in the ActivityPub world are a big part of that! ❀️

Awww ☺️, I hope you find your productive streak soon again 😁! The decentralized community movements like Nostr are motivating me as well πŸ™‚β€οΈ.

I am curious about your thoughts behind Wordpress + MkDocs: do you try to solve it in Wordpress so that everything is under one hood, or whats the reasoning? Wouldn't it be simpler to use something like https://www.bookstackapp.com/ ? πŸ€”

I hadn't heard of Bookstack, cool tip, thank you!

my reasoning for using Wordpress (MkDocs came later, originally I was gonna use a Wordpress plugin for the wiki, blech) is simply that I'm familiar with it, and my mental bandwidth for learning new frameworks is very limited and will stay that way until I have my own space.

when I left off building the website in July 2024, I had just started styling MkDocs-Material to match the style of the Wordpress portion of the site. I'm not sure exactly how the integration will go yet, I found with such limited availability of mental coherence, sometimes I have to just start building and see what happens πŸ˜†

oh, one reason for using MkDocs - all my existing personal documentation is in Markdown format.

anyway, not much progress on the site for a few days, but I solved a longstanding problem with my reverse proxy setup by switching to Wireguard!

This is very heavy stuff, I am really concerned reading this. I will pray for your healing! Maybe this does sound kind of flat, but I already had some "power encounters" from time to time, in people praying for me when I was sick: For example: one of Randy Clarks ministry team members, then: members of the church I am attending, and: my local pastor, and also: a regional leader of the D.A.CH vineyard church movement. Somehow there is more between heaven and earth and there are things that we can't fathom in total.