Sleep and Mental Health

I accepted that if I’m going to study full-time I need to rest when tired, and sleep at night. This was hard, even if I know it on an intellectual level, accepting it on the emotional level was not something I’ve really been able to do.

Yesterday I both napped, and slept at a reasonable hour. 3hr nap when I got home from uni, and 10hr sleep from midnight, approximately. I was a lot more tired yesterday than I thought I was, and “crashed” when I came home from uni. Note, I could’ve been home all day, but I wanted to get some stuff done, pick up a book and do some studying, so I went to uni. When I got home we had food ready as leftovers, and I could eat before resting (thank you past me).

What I’m trying to get at is this: I will still need to rest today because I’ve been at it all week. Even if I feel surprisingly rested already by allowing myself to both nap yesterday and sleep at night.

Again, there was an emotional “I’ve been good all week, let me be up all night and game”-response which I had to fight, not too hard luckily. I did it by just examining how I was feeling, and which was stronger, and tired was it. After a 10hr night, I’m still going to take it very easy today, but do a few things around the house to make us both feel better, to make next week even easier to deal with.

I do feel like if I keep at this balancing I should be okay. And I need to process and remind myself what works and what doesn’t work. As well as, why it works or why it doesn’t work.

The Night Owl

This morning, I felt good about having gone to bed early last night, and that sparked a conversation on Mastodon about Night Owls.

I realized that, as a night owl it had helped me to figure out Why I enjoyed being up at night in order to be able to enjoy going to bed early and waking up early. This can also be combined with why I would enjoy going to bed early, but I’ll try to cover that in another post.

For me it’s the silence and calm that comes over the City at night, a lot less cars, almost no people, animals are resting too. And usually it gets a lot cooler.

If I get up early I can still get some of that calm before the morning rush, and if I go shopping while everyone else is at work I catch it too. Oh, also, going out to the park early in the day as the sun is coming up is its own tranquility. Or a morning walk to get to work / school.

I can seize the means of my tranquility by finding space ever day to lay down and ground myself, find quiet areas, ask that we do not have stuff on the speakers all day, as well as tuning out the world with classical music.

The darkness is also very calming at night, and helps me get work done. Lucky for me, as I’m going back to Uni for studies, I’ve found that the silent cubicle at the university, is a glass box for reading, where you’re not allowed computers or sound on your phone. There are drapes up as well which block out most of the light. This space turned out to be a great place for me to hide for a bit and get some energy and focus.

I guess what I’m trying to say is: If you want to change a habit try to identify what about that habit makes you want to do it, and see if you can fill that need some other way. Do it alone or with a friend.

If you enjoyed this little article of musings, and would like me to be able to write them more, feel free to head over my patreon and check out the tiers there, $1 can go a long way!

A journey in writing and editing

This particular journey started about 9 years ago, when I began using the internet for activism, and eventually got my first Netbook.

Thinking about it it’s possible that it began even earlier when I was in my teens, hanging out on IRC and eventually learning to write scripts for mIRC. I began programming.

That interest stayed with me, while the interest to write had already been with me since I started to learn how to write. I kept a diary when I was 8 years old, and eventually I began writing more and more in it, always caring a diary with me in later grades in school.

Different communities provided diary functions, what I didn’t realize at the time was that this was basically blogging, and I did it a lot. Even when I had a physical notebook to write in by hand, I would also keep a public, to friends or everyone on the platform, diaries.

The first one was plain text, which eventually got some formatting options, and if you understood how to use them you were some kind of wizard. But I wanted to learn, play around and find my own esthetic.

But, the journey I’m more interesting in is from html text editors and CLI, and shunning WYSIWYG, to be now actually preferring to work with editors which help me along the way.

Basically it’s a mental health thing, an allocation of resources. Finding that I’m now incapable of running Linux which tbh even the best of visuals still rely heavily on the command line, and opting for windows “because it just works”.

Yes, I’ve run my own wp server. I’ve had two Ubuntu servers to play around with. One for media and one for internet stuff (the WordPress, as well as irc related stuff). And yes I’ve run Ubuntu on my Netbook. I’ve fixed broken windows installs with help of Linux, and used to write really noob guides for Linux when I got started with it because there wasn’t any that were on a low enough level to teach me the lingo etc.

I used to prefer plain text, and just focus on writing first and formatting later. I’d be able to crank out an idea without looking at it until later, sometimes already formatting in code format because of the editor.

Today I have been trying out the new Gutenberg editor with WordPress, and I’m finding it very rewarding to use, for me in the place I’m at right now. What I mean is, because of various brain fog and other difficulties it helps me to be able to just view the visual and find the correct button.

So I went from this to only running Windows or Osx (because we have two MacBooks in the household), not launching my own servers or self hosting in other ways. And writing in editors which help me along.

My journey had taught me that wysiwyg editors etc. serve a purpose, and help those who need it. Currently for me, with CFS/me it’s just too much mental overhead to set up my own server, learn a new platform to work with, instead of just picking something I already know.

On that note though I’m currently trying to baby step when I want to try new things, and there’s progress being made, but we can talk about that another day. Being able to choose what I do where, gives me a lot more space to learn new things, and energy to write more blog posts. I feel like we’re on to something here.

This post had been updated from its first draft to add in a few more paragraphs.

If you enjoyed this little article of musings, and would like me to be able to write them more, feel free to head over my patreon and check out the tiers there!

Disorganized publishing – publishing on the go

While writing at the keyboard at the computer is quite nice, swiping away at the phone is a whole other beast.

I’ve learnt that I can touch swipe better if I’m looking at the word in writing rather than looking at keyboard. Which is interesting. I think it’s easier to remember the approximate motion of the swipe by just not looking at the keyboard, when I do it always feels like I’m missing

Example of wiring with the apple store function while looking at the keyboard

Example of looking at the text instead.

I did change what I wrote, because I started editing. Maybe I should make a video some day to show you all how smooth this is.

I have two words that always get written wrong when I look at the keyboard :

Thank has been plaguing me for the past few months always turning into Thanh and Thang…

Remember I had to rewrite three times just now.

That said, I guess this is my endorsement for SwiftKey!

Yes, I know they basically track everything I type, but it’s so valuable to be able to just swipe away.

If you enjoyed this little article of musings, and would like me to be able to write them more, feel free to head over my patreon and check out the tiers there!

When the world around you gives up and forgets you

While a lot of the work I do do is public and visual, all the work I can’t do, is for quite obvious reasons, invisible.

That I can stream may be indicative of the fact that I should be able to work. And maybe it is but I just can’t see it myself, maybe I haven’t gotten far enough to make something worth while out of it. This isn’t a text about giving up, but rather about feeling invisible, and it’s going to get personal and it’s going to suck. But here goes.

I most likely have Chronic Fatigue Syndrome or something similar or close to it, while I thought I was already diagnosed with it, it turned out I wasn’t diagnosed with the Chronic one, even though I can trace it back to being 17 years old, if not earlier. So there’s things I need to do to get the help I need to be able to live, things that I can’t get myself to do because I do not have enough energy. Energy in this capacity is often referred to as spoon, as per Spoon Theory, which tends to help people who struggle with mental health or chronic pain issues, explain why they do not have energy, or why they can’t take care of themselves.

I am a very sociable person, I’m just bad at reaching out to people who are important to me, and family in particular. I reach out to my family when I’m in trouble, and I wait until I’m in a deep hole I can’t get out of on my own. I reach out to friends who I have showed that I can pay back when I can’t afford to pay off some shit, especially since I thought I had a job, turned into me not having a job, and not having an income and now I can’t pay them back. No, this isn’t a begging for support, post. I’m beyond that. I won’t do it, it’s not my style. So I’m here providing content, if you may, so there will be a reason to support me, and the stuff I do.

Other visible things I am able to do, which you probably see that I do is the streaming, which I already touched upon. Streaming is something I can do from home, without having a shower (on my worst days), and push over that threshold of anxiety that would leave me paralyzed and not able to leave the house. Again this loops back to “But if you can stream, why can’t you get a normal job?”, who would want to keep me hired if every few days I collapse in tears, or can’t get to work because I’m exhausted or crying? What work could I do that doesn’t drain me entirely? There was one thing, and it’s something I may be able to do again, and that is working with community and taking care of community.

Sharing this post, may actually turn into being detrimental to getting a possible job in the future, so be it, because I need to talk about these feelings.

Yesterday, which I guess is the trigger for this, I saw that people close to me, close to my heart was finally close by geographically, my sisters. And they were just across the bridge, and if they would’ve wanted to, they could’ve seen me, or let me know that they were “in town”, I would have dipped into those savings and headed over, because being allowed to see them if just for a few hours, instead of spending more than 16hrs of travel to try and go to where they live (I say more, because 16 is if you go by car, with no stops). But I did not get the chance to go see them yesterday, or if it was the day before, who knows when Instagram shows you these things. I did not even get a “hey we’re going to be in Copenhagen, but we can’t make time to see you for x y z reason”, I could have lived with that. But I’m afraid that they didn’t reach out to me, because they know I don’t have enough money for rent, and probably didn’t want me to ask for money to be able to see them.

I am considering throwing myself out on the job market, even though it scares the crap out of me, and then work myself until I’m totally exhausted and broken and end up on full-time sick-leave again, because that would be a way to pay the rent. Unfortunately, because I’m in between, and not sick enough, but also not well enough I can’t get help. Because I followed my heart and my passion last year, I lost any chance to get supported via the Swedish welfare system, because that system isn’t adaptable to people like me, people who may get spurts of energy, but then be nonfunctional for the other 75% of the year.

Maybe this is why my rate is pretty high, because I need to be able to afford not being able to work. I need to be able to pay the proper taxes and insurances to handle getting sick. Does that mean that what I can give when I can give isn’t worth it? I wouldn’t think so.

Who wants to support someone who’s just sad and depressed, that’s what we ask ourselves a lot of the time isn’t it? Even when we are being supported, we view ourselves worthless, because in a capitalist world, you’re only worth as much as you can produce, and maybe even then you’re not good enough.

What I’m trying to say I guess, is that I do not know how we’ll be able to support ourselves this fall, but we have made due this year, barely scraping by, with some extra pushes around Xmas, and for my birthday. If we can’t get money from studying this fall, we may be fucked. But we’ll deal with that when we come to it.

Making due, and barely making due. We’re okay, I mean we have a roof over our heads, but as soon as we can’t pay rent anymore, then what? I don’t know. Anyways, summer still has a lot to bring, and I can maybe write more again, finish the revamp of my patreon, continue streaming, and figure out if I have enough energy to squeeze anything else into this. Thank you for reading, and… I think you know where the tip jars are, if you feel so inclined.

The first #ForkTogether meeting, and what went wrong

On the 30th of June, we had the first Fork Off Together meeting, for which the goal is to fork off from the Mastodon project. The idea had been simmering for a while, and the required logistics was a lot bigger than one person could do on their own, yet, I tried to do it on my own.

Let me explain, I was not doing it on my own per se, but rather I was doing a lot of the preparations for this one meeting alone, even if I had two people that I worked fairly tight with, at one point my head just got too tired to properly communicate with others about what help I needed, so it more or less got easier to “just do it myself”, or ask my live-in boyfriend for help, as I could point and grunt at things, when words wouldn’t come out properly.

So, what went wrong with the first meeting?

To start off, over all it was a good experience, but we definitely had some teaching moments which we seemed to, as a group, react well to.

However, I want to start by pointing out what went wrong from my side ie what I could have done better or different. This isn’t about placing blame, but rather a reflection on why I did it the way I did.

So, my initial idea was based on something that I had experienced and learnt when I was active in the Pirate Party here in Sweden between 2009-2014. The organization had a way, which is common (from my understanding) for certain types of organizations, namely the type that has a lot of smaller organizations under the same umbrella. Eg. political org or youth organizations that wants to try and get funding for their work locally.

Having this kind of meeting, is a way to make it easy to start up one of those new small orgs, only requiring 3-5 people, and being youth orgs it meant that they could get a little money from the government. This also doubles as a means to encourage youth to get engaged in activities which will in the long run keep them too busy and away from crime, (but don’t quote me on this, this is just my general understanding of the concept).

What I tried to do was leverage that knowledge I had, to have our own startup meeting, and jeebus I had to try really hard to not accidentally use that term.

In the political org case, it was easy to adopt the same bylaws, coc, operational plan etc. because we were all part of the same organization. This was definitely my first mistake.Unfortunately I didn’t mentally connect the dots until the actual meeting, and I couldn’t have done it different at the time.

I need to highlight here, that the accepting the bylaws and things during the first meeting of this kind was based on it being a sub-association of a bigger org. There wasn’t supposed to be a need to do to much with the bylaws and if there was it would’ve been done before the meeting.

In my foggy mind I didn’t get this out in time and worded correctly. Heck, I had even said “no we won’t draft bylaws” before I realized the translation in full. I could have, and probably should have, checked myself when I realized that that document translated to bylaws. But I didn’t.

Another member of the meeting wrote some good reflections about this type of meeting too.

If that was my first mistake, what was my second one?

I thought that I could distance myself from responsibility and active choices by leveraging that I was just inviting people to a meeting. I didn’t want to make decisions for us, and this was the only way I knew how.

This isn’t as much a mistake as it is paradoxical. Mostly because either way I make decisions and it becomes a really weird situation. Especially if I couldn’t get all the info out of my head as fast as the questions came my way.

About 14 days in I was able to entirely fall apart, and did some public spectacle which didn’t reflect well on me, and also ended up possibly harming the project, I pushed away some people I really wanted in on the ground floor.

I could make excuses, and I could try to explain myself, but it won’t change anything. However, what I can do is recognize that I did screw up and that I can do better in the future. I understand my why, and that means that I can take preventive measures.

So, what preventive measures can I take in the future?

A big one, delegate. While we were 3 people working together in the early days, the same people who’ve also rejected any direct involvement in management, or interim-committee or the committee / board for the first year of this project, I did a bulk of the work and had trouble getting stuff out of my head.

When I felt like I was about to entirely break, the incident referenced above, I should’ve let go right there and just set up a Discord server and invited everyone, and continued to contribute to the group in their process of preparing a meeting together etc.

But at the same time, if I hadn’t done the meeting the way I did, I would not have learnt the lessons I did, so this is a double edged sword, imo.

So, what went right?

I took my time, and worked through it slowly. I built small road maps for myself to guide me along the way and asked for help when I felt stuck.

I need to remind you all that the survey blew up way bigger than I had ever expected. I think by the end we had almost 200 responses to the survey, and over 120 saying “let’s do this”. [link to the shared data on June 11th]

I couldn’t have planned for that, but when it happened I tried to baby-step my way through it.

The meeting, even though it was long and had it’s issues, was also pretty damn fantastic. The way I had translated Swedish meeting formalities to a discord server turned out to work pretty well, and once people got a hang of it they seemed to appreciate the somewhat rigid structure.

I hope, that using this experience I can create a template for hosting a first meeting when a group of people want to start an org together, and maybe I can help someone else avoid some of the problems that we encountered. Because there’s some solid structure here that definitely can be reused. That said, I will be publishing a separate post about the actual meeting structure and how set it up.

In a relationship with Anxiety

Someone updates their facebook status. “is in a relationship with”. a sentence that is rarely finished with anxiety. chronic pain. fatigue.

The more I think about it, the more I realize that I am in an open relationship with anxiety, chronic pain, and chronic fatigue (CFS). I am also in a relationship with my partner, who lives with me, and helps me deal with these destructive relationships which I can’t get away from.

It is like I am married to Anxiety, and we aren’t allowed to get a divorce, nor live apart. So we live here, together in this house, which is my body.

On bad days we will fight, and break things, anxiety will push stuff around inside of our shared house, which also happens to be my body. Anxiety doesn’t care though. Anxiety doesn’t care if they are hurting me, or our shared house.


I have accepted my fate, that we have to live here together. So, like anyone in an abusive relationship, I… let Anxiety go through the motions, I let them run through the house and wreck things. While I sit silently in a corner hiding.

the constant tension, the fear that they’ll break something. break me. hurt me so much that there is no return. parts of the house become off limits though, but in order to keep anxiety only located in my chest, tension spreads, to shut off the exit routes. My arms, my hands, wrists will contort, as I am trying to calm down anxiety inside of me.

Unfortunately Anxiety will have none of it. “Calm down please.” -NO THE WORLD IS ENDING. “look the world isn’t ending *point at window*” – NO? NO? Okay, BUT FUCK YOU YOU BITCH FOR TELLING ME I AM WRONG.

Anxiety is not reasonable, and not necessary a creature of anger. Just that the rest of the body goes into shutdown, to take care of Anxiety. We care for them, and the concerns they have, we want to help. We want to rationalize. but we end up paralyzed, while trying to calm them down.

Hi, friends, I’m in a relationship with anxiety. – HOW DARE YOU TELL ANYONE WE ARE TOGETHER. I’m not comfortable with you talking about us with other people. Stop it. STOP IT.
Anxiety will always tell us to not talk about them, we are only allowed to talk with them. But when we do, they lead the conversation. Or they make sure we are both quiet.

As I writhe in pain, pain caused by Anxiety, I am told “just break up with them”, by someone who’s never been in a destructive relationship. Who has never feared for their life.

When I talk about Anxiety, they punish me. and I hurt more. I can never talk about them without them showing up, and wrecking havoc in our house.

Sometimes they leave for a while. I don’t notice, because I am occupied with activities that I can’t do when they are around. I can do things which I love, and would love to do more. things I don’t have energy to do when Anxiety is home.

when Anxiety is loud, I get quiet. I may go and rest. Or try to find an outlet, or a distraction. Like eating. Let’s sit down and break bread. Let’s eat, to feel better. -FATTY, why are you eating that? Stop eating. eat more to calm down. Just another piece of crunchy chocolate. chompchomp.
It never helps to eat with anxiety, but I always wish, that today it will work, just this time.

I see myself as a very outgoing person, a happy person who enjoys the company of other people. But on days when Anxiety is present, I am not me, I am quiet instead of talkative. And I just want to hide, because why should I spend time with people if I am not me.

I don’t think Anxiety will ever leave me. And I just have to make due. Sometimes I can rationalize with myself, rather than Anxiety. I will ignore Anxiety’s answers to my questions, and look for my own answers. Sometimes I have to repeat the question over and over, until my voice can be louder than the voice of Anxiety. Sometimes it works, sometimes it doesn’t.

This is a short essay, and not nearly exhaustive on the subject of living with anxiety.

If you enjoyed this little article of musings, and would like me to be able to write them more, feel free to head over my patreon and check out the tiers there!

First week of work

I’ve been working with my new job for a week. This is the first day that I’m taking a real day off. I tried om Saturday, but I had fires to extinguish. 

I slept 14hrs, and woke up around 13.00. Sleeping this much reminded me that I’ve been neglecting my naps and rest time. I’ll elaborate on this, just have to go through a few other things first. 

Yesterday my live-in boyfriend pointed out that I have been working a lot more than I’ve clocked. Which made me realize that I need to compartmentalize my work more. 

So these things connect, obviously. I need to delineate what my work entails, so I focus on that during my work time. While doing so I also need to delineate my work time as well not just clock in when I’m already doing work my accident. 

This will free me up from stress, because this is my work box [work], this box entails (these chores). Then outside that box I chill and focus on my studying for that designated time. And take my god damn naps! 

My studies,  I’ve already compartmentalized, which has helped me a lot in staying healthy. Basically I’m just borrowing from what I learnt when I started school again in January, after a year sick-leave. 

Maybe I’ll do more updates like this! 

For reference, I have Chronic Fatigue Syndrome, which makes getting a job scary and exciting at the same time. 

“I’ve had a day”

“I’m having a day, a week, a month…”
I recognize myself so much in this. I kept chugging along, for years, just one more crisis to manage, where to live, how to eat, how to pay rent. Get through my courses so I’d be eligible for student loan so I could do those things.

Watching this video, really hits home. I’ve not felt purpose in a very long time, until just recently (the past few months).

When someone asked how I was doing? “Good and bad, chaotic but smiling. He he he” I’d laugh it off, the bad. The stress. The chaos. Sometimes I’d rant for a few minutes on what’s been up. Like when I moved 6 times in 2.5 years, and didn’t know where I lived anymore.
I still have nightmares of not knowing where I live.

That awkward, nervous laugh… It’s just to stay alive, “if you smile you trick your brain that you’re actually happy”…

last year I made a new friend, who lived here in the house. She always smiled and was very cheerful. But I could see that behind her eyes were unhappiness. She was suffering as much as I was. We met before I got sick-leave due to my exhaustion.

Other people around us said “Uhhg, she’s so false, always cheery and smiling all the time”… I’d sit in silence regarding this, most of the time. Until I didn’t. “we have to trick ourselves, to stay alive, by smiling” is what I wanted to say.

I ended up with, not wanting to out her, out that her mom had brain cancer, and that she was as stressed and broken as I was (the few conversations we’d had had revealed this), saying: “You know, you don’t know what she goes through, you don’t know what’s behind that smile, some people just use it as a coping mechanism, to keep swimming”. Maybe that wasn’t the exact words… But that’s what I tried to say.

Someone who you may see as just false, is probably struggling, every day is a fight. Every breath is a fight.
You have to keep living, until one of two things happen: You catch a break, or you die.

Supporting people in such a situation, with the littlest you can, is a huge thing. Stepping away and not attacking people that You Do Not Know In Depth And Personally is the right thing to do.

I’ve had people help me pay rent in my life. Know what? I’ve helped people pay rent too.

The people who’ve had the least, are usually those who are ready to give the most when needed. They will remember their own shitty situations that they have survived to get to where they are today.

Giving to someone who has very little, will by extension help someone else in a shitty situation in the future, because these people will be so ready and alert to other people’s needs.

Any time when I know I can pay all my bills, and food for the entire month, and that I have another salary / income at the end of the month I do help other people. Maybe not always with much, but something little can make such a huge difference, it can mean the difference between having medicine this month, or having food at the end of the month.
I have a friend who’s fallen outside of the social security system. I buy her food at least once a month.

Today you probably look at me and go “you just got hired for a job, what are you complaining about.” Yes. Yes I did. I am privileged, but also incredibly lucky. Just dumb luck, that @sargoth sent me a message “psst mastodon, register” (before we hit 40k users here), and another series of events leading up to this.

I hadn’t had my period for 110 days because I was stressed about not knowing how to survive the next year, just trying to get through the next few months of studies..

This is a copy paste of a rant I wrote on mastodon.