Dealing with Depression, Lockdown Edition

The people in our household have come to the point where we’ve lost count on how long we’ve been in lockdown, especially since we started self-isolation long before that, but a few things have become clear: Lockdown depression is here to stay.

Disclaimer: I do not have a neurotypical brain, as I probably have ADHD. The content in this post may or may not be relevant to you.

So, it might sound macabre to say that the lockdown depression is here to stay. But to me admitting that I was actually dealing with depression again, when it’s been some years since depression was my main issue, made all the difference, because I know how to deal with depression. The past few years have mainly been physical issues causing depression like symptoms occasionally, and there is a difference between the two. Knowing what your dealing with makes it easier to bring out the right tool kit. Like you wouldn’t try to use an Allen Key for a Phillips screw. No that’s not true, we’ve all tried it, because getting the other tool would be too much work. But we also know how it ended: the wrong tool didn’t help you handle the problem nearly as efficient as the right one could’ve. That said I feel like it’s also important to note that efficiency isn’t everything, and do not let the perfect be the enemy of the good, but if you have the right tools available to you, do take a day to try them.

When I realized that I was dealing with depression and remembered that I have an entire toolkit to deal with depression, which is slightly different from dealing with anxiety and other ailments, I decided to get to work.

The first try actually resulted in a severe backlash, so be aware that your mind may punish you for trying to fix all the things at once. At first when I realized that I can help myself feel better I started by trying to take a walk every day, and showering and cooking etc, all at the same time. And for my brain (I dunno if this is a ADHD thing, a me thing, or a general thing) just went “what the actual fuck”, and kind of shut down even more and led me to be more depressed. This was when I realized that just taking better care of myself wasn’t going to cut it I had to restart entirely. For me this was when I decided to really get back to basics.

What do I mean with basics? Well, this will vary for different people and I’m sure I’ll get plenty of tips from you all after reading this as well, but for me it was this:

  • I don’t have to do anything.
  • I chose one thing every day that I want to do (emphasis on want), and try to do that.
  • Forgive yourself.

Disclaimer 2: If you have a family and children or pets to take care of this will probably be a lot harder to accomplish at least in the way I’m going to describe it. But if you find yourself depressed in such a way where you’re not taking care of yourself or them this may be the place to start. For example: if I had still had a dog my one thing every day would be taking care of the dog by a small walk with them and feeding them. That also ended up being where all my energy got allocated, and then I’d return to bed and cry, or go to the computer and distract myself while being very numb.

Context: one of my most extreme ways to get out of my depression was leaning full into it. I was in my early 20s, and I had all these “must”s and “should”s looming over me, and it was making me sick. Even writing about it now makes me feel uncomfortable, and I can feel those sensations in my body. I had to remove myself from everything that had “I have to” or “I should” attached to it, until I was ready. So I stopped showering unless I wanted to, I ate danishes for breakfast or dinner if I so felt like it, or a pint of ice cream. All of these were associated with myself, I still took care of my dog even if it was the bare minimum. I don’t remember how long this period lasted, because it’s well over 10 years ago, and I don’t recommend it as a first solution, but when nothing else works I know I’m the back of my head that I can always try that. But, since this wasn’t the extreme I wanted to go to yet, I needed a different method.

Step one was telling myself to stop trying to force the good things to happen. Stop trying to force myself to do all the things (which had caused a backlash), but I didn’t want to go as extreme as I had in the past.

Thus I decided to choose one thing a day that’s what I want to get done today. Saying that I “want” to do it, rather than I “have to” do it, also makes all the difference. There’s a cognitive difference there, and even if you know you’re tricking yourself by changing the wording, it may help. For the past week I’ve been doing this, and every morning (or noon or late afternoon) I’ve decided on a thing I want to get done that day to make myself feel better about having done something. Today it was to take a shower. A few days before that I wanted to make a proper meal, enough for leftovers which I could have later. Each of these things made me feel better that day, and by me saying this is the one thing it relieved a lot of pressure from myself because I didn’t have to do anything else, unless I felt like I could, and I still did good.

Choosing one thing that you want to do every day doesn’t mean you won’t do other things. You still can, but it’s important to remind yourself that you don’t have to do anything else. Earlier this week when I also had “shower” as my one thing, once I had I felt good about having done my one thing, so while I was in the kitchen I ended up wiping off some surfaces, I helped my house mate in the garden, and I made late lunch for me and them. It’s important for me to reiterate here that this isn’t supposed to be a trick to tell yourself that you only do one thing today, but then secretly plan other things, your mind knows these things, so be careful of creating backlashes because of that.

On Saturday this weekend, I spent all day doing nothing and eventually realized that I wouldn’t get one thing done. I chose to forgive myself for that, that I can’t always do something. Some days are just going to be horrible. That night had been terrible, and I had not gotten nearly enough sleep, and I needed to just wind back down from that.

In choosing to forgive myself I removed the pressure of “I have to do something today”, yes even the one thing is some pressure, which I try to make it fairly small, and beneficial so the cost is outweighed by the reward, and so I can get it done first thing when I get out of bed. Removing that weight from my shoulders helped me relax again, and eventually that evening I sorted out a box so we can move some boxes upstairs (I moved into a couple of my friends’ house a while back, and we’re still shuffling stuff around). I do not think I would’ve been able to do that if I hadn’t forgiven myself.

Another tip, bonus, is to be the friend to yourself you’d be to your friends. Tell yourself all the things you’d tell your friends when they were struggling with similar things as you. If you can’t do it in your head, try writing it down as a conversation, or something like that.

In these trying times we need to take care of ourselves and each other. For me sometimes the best community care is self-care, because the better I feel the more of myself I can give to others. You can not pour from an empty cup.

How are you dealing with your lockdown depression? Or mitigating it before it even turns up?

On Scraping Mastodon

Mastodon was scraped, again. It was not the first time it had happened, and it probably wont be the last. This time it was for research, not just archiving which we had encountered in the past. The actual scraping happened in 2018, but the research was recently published, and this is why we’re talking about it now.

Background:

The research article, “Mastodon Content Warnings: Inappropriate Contents in a Microblogging Platform”, was written by authors from the Computer Science Department, University of Milan. The same group of people have previously published another research article related to Mastodon, “The Footprints of a “Mastodon”: How a Decentralized Architecture Influences Online Social Relationships”. In their previous paper they also had a lot of misunderstandings of the technology as well as the culture of Mastodon.

While it is tempting to do a complete analysis of the research, in this post I will point out a few issues with it, both from a technical perspective and an ethical one. In doing so I will reference and quote a few sections. However, it will not be a full analysis of all of the paper.

They wrote that they hashed the usernames, but included the URI of the posts in their database, which has the username in it.
Screenshot from Mastodon

The research papers both contained datasets: the first one had focused on meta data; and this last one’s dataset was match-able with the previous one, even though it was “anonymized”. However, it was brought to my attention that their anonymization was pointless, because the username was still in the URI.

The 2nd dataset, for the latest research paper, has been removed from online access with the comment:

“Deaccessioned Reason: Legal issue or Data Usage Agreement Many entries in the datasets do not fulfill the law about personal data release since they allow identification of personal information.”

Does this mean that they did not take any of these things into account when they wrote the paper to begin with? If we look at their ethical and legal considerations we can see that they half-considered it, and I would argue missed the mark. The way most people were talking about it, it did not actually seem like they even had made any ethical nor legal considerations in their research. Reading them, I realized that they probably would’ve been better off if they had written the legal consideration first, and then have that inform the ethical consideration.

Legal and Ethical Considerations

In the legal consideration, they said that from what they had gathered they had not found anything in the ToS (Terms of Service) of the standard agreement, bundled in with a Mastodon installation, indicating that they were breaking it by doing this gathering of data. I would like to argue that there may be ethical considerations about not technically breaking any legal barriers. What do I mean when I say this? I’m trying to convey that the legal considerations could have also had ethical concerns. As the saying goes: just because you can do something doesn’t mean you should.

In the legal section they also write:

 “In the terms of service and privacy policy the gathering and the usage of public available data is never explicitly mentioned, consequently our data collection seems to be complaint with the policy of the instance.” 

I can understand that if a legal document does not explicitly mention something you may feel like you have free rein. Stating that there is nothing explicitly mentioned, may indicate that there’s something implicit that they chose to ignore. However, they do not elaborate. If they had followed the legal considerations up with the ethical considerations, maybe they could have discussed the ethical implications of the decision they made there.

Further, they do recognize that each instance has the ability to adopt their own Terms of Service (ToS), but then seemed to have not followed through and actually checked if any of these 300 something servers had added their own ToS. I feel like there’s a clear disregard for the possibility of there being other ToS. With no indication that they checked a certain % (say 10%) of the listed servers and their ToS, which would have showed that a clear “majority” used the standard ToS. They could have recognized what differences do exist. I feel like there was simply an assumption rather than actual research done for this part.

Did they make any ethical considerations? It seems to mostly reflect the collection methodology, rather than answering any ethical questions, such as:

  • Would the users of Mastodon want to / expect to have their data scraped?
  • Would it be better to ask servers/users if they would want to participate in the research? 
  • Is this research actually a Computer Science research, or should it be a Social studies research paper, taking into consideration such ETHICAL questions?
  • Should Computer Science have mandatory ethics courses?

Credit where credit is due: The last question is lifted from several people on the fediverse who’ve asked it before this research paper was published, and continued to ask after it was published.

I think the biggest issue here, is that because these researchers do not seem to understand some of the culture on Mastodon (no there’s not only one culture, but there are some which come to mind for me) and have some basic misconceptions about the community and software, it was hard to come to any useful ethical considerations. Would they have allowed themselves to come to the conclusion that they should not publish their paper? Probably not.

Technically the Content Warning

While there are two research papers available to me, I only want to focus on the misconceptions in this research paper: “Mastodon Content Warnings: Inappropriate Contents in a Microblogging Platform”. I believe that their entire conclusion is way off because they simply misinterpreted how a feature is used on the servers.

In their methodology they described how they interpreted the technological “sensitive” field in the meta data:

“each toot provides the fields related to the inappropriate-ness of its content, namely the entries “sensitive”, “content”,“spoiler-text” and “language”. The boolean field “’sensitive” indicates whether or not the author of the toot thinks that the content is appropriate. If the toot is inappropriate, the field is set up to “True” and the field “spoiler-text” would contain a brief and publicly available description of the content.” (Sic)

Correction: The sensitive tag happens when someone adds a Content Warning to their post. The sensitive tag says nothing about the actual content, and what the person thought about it when they did us (I’ll elaborate on what Content Warnings mean culturally on Mastodon further down).

However, they had interpreted the technical function of content warnings correctly, with this first two sentences:

“By clicking on the “CW” button, a user can enter a short
summary of what the ”body” of her post contains, namely a
spoiler-text, and the full content of her toot. Automatically,
the system marks this toot as “sensitive” and only shows the
spoiler-text in all the timelines. (…)

The next part was unfortunately where one of the misinterpretations of the data happened:

“(…) We exploit this latter feature
to build our released dataset. This way the toots are labelled
by the users, and we assume that they are aware of the policy
of the instance and aware of what is appropriate or not for
their community.”

This section emphasizes that they believe that the Content Warning is only used to mark content as sensitive if it’s inappropriate, and if it does not belong on the server. Correction: If the content does not belong on the server, the users is most likely going to be banned. 

This point was an reiteration of the previous statement in the methodology:

“Here we describe the collection methodology of the two main elements of our dataset: i) the instance meta-data and ii) the local timelines of all the instances which allow toots written in English.

Specifically, we are interested in the full description of each instance and the list of allowed topics. From our viewpoint, these two fields contain the information related to the context which makes a post inappropriate or not.”

The misinterpretations seem to be stemming from assumptions, rather than research, about how the technology is used, what the “sensitive” tag actually means, and how it’s used on the over 300 servers used. This leads me to the cultural and social misinterpretation.

The Social Construct of the Content Warning

I believe that the biggest issue is that this research was in computer science, without any social science involved, with no consideration to the social part of social media. I’ve already noted that their assumption and interpretation is incorrect, so how are the Content Warnings used?

While I only have the empirical evidence from the servers I’m connected with, I’m still going to go out and say that: Content Warnings are in fact not used for content we do not believe belong in our communities

Rather, Content Warnings can be used in many ways. One way to describe it is simply as a subject line, similar to email. In some cases we will talk about more sensitive subjects, like addictions, drugs, war, news, politics. This is not to hide the content, but rather to offer the people reading it a chance to decide if they want to open it or not. If today is a day where reading about US Politics would just drain all my energy, I can choose to not open it. 

We can also use it for other things, that may be slightly sensitive to some, like food, meat, sex, nudity, private, venting (of emotions). It’s also common to use for post about money, house-hunting, mental and physical health, very positive emotions and very negative emotions. In some cases it offers us a chance to unburden ourselves, without dumping those emotions onto someone who is not given a fair chance to prepare themselves for it. 

There are other fantastic uses for Content Warnings, one which is especially dear to the community’s heart is as a setup for a joke. Some times the same CW will circulate in a meme like fashion, and contain things that make us giggle. Another common one is as spoiler warnings for Movies or TV series, or even books or other readings. You can then use the headline to tell everyone which TV series you’re about to talk about, and also denote which episode. This was great towards the last year of Game of Thrones for example, when a lot of people would be talking about it the day of the new episode. 

So, to emphasize, we do not post Content Warnings because we believe the subject is inappropriate, we just want to offer the reader of the post the chance to give informed consent. And using informed consent, is something which I believe the authors of the research could take a lesson from.


This article was supported by my patrons. If you enjoyed it and would like me to be able to write more of them, feel free to head over to my patreon page and pledge your support! 
Alternatively, check out my support page for more info.

Staying casual in the intentional

I decided to focus on writing more.

It’s easy to find yourself wanting to only produce marketable content™.

And then I remembered that a lot of you are here reading because you like the words I have put out in the past.

Not all of that was marketable content™.

Sometimes it’s just words scattered on the page, on a page, on any page.

Even on days when that big article is on the back burner, because I already processed a lot of it today, I can write something like this.

It doesn’t have to be fancy, or perfect, or well thought out.

It can just chase a feeling down the page.

Getting more poem like with each stroke.

Stroking my touch screen keyboard, swiping the words, producing a melody.

Or entirely failing to produce one.

I don’t always have to perform and be perfect.

I don’t always have to achieve. I can just be.

You can just be.

We can all be together and share small things of ourselves that we recognize as each other, but also us.

You see yourself in me, knowing that you’re not alone.

Knowing that there are other voices out there, hurting or laughing just like you are.

You know that they have gone through what you’re going through right now, and somehow they survived.

That means that you can survive too, and take a few more steps to get through today.

And then down the line, when these words still sounds like waves flowing over the sand.

Flowing over my touch screen keyboard as I swype, or swipe these words, producing more melodies.

Bunched up with memories, you get to share your story to someone else.

Who’s just like you, when you first heard those words many years ago, when you realized you weren’t alone.

Now they know too.

You do not have to write a blog post only to publish marketable content™.

You can just be you.


This poem was not sponsored by my patrons, but it could be in the future. If you would like me to be able to write more of them, feel free to head over my patreon and check out the tiers there, $2 will hopefully eventually start sending poetry straight into your inbox! (it’s a process)
Alternatively, check out my support page for more info.

Admitting Defeat: this is a rough one

CW: suicidal ideation, capitalism, chronic illness.

A friend reached out to us, in our shared community, after having struggled with emotions around their chronic illness around the new year. The New Year always comes with resolutions, people making big plans for the year to come, and for some of us with chronic illnesses, especially ME/CFS, it often means coming face to face with the fact that we can’t produce anything of worth. I say this in this way because this is basically what capitalism has taught us. If we can not work a full time job, or even a part time job, we are of no worth. This is something which is incredibly hard to disengage from, and avoid feeling when you’re feeling vulnerable, and unable to perform and “contribute the way you should to society”.

The person who posted this, and made me think about it, shares a lot of wonderful thing with us in our community, and they are definitely contributing something valuable to people around them. Everyone has something to contribute, and I guess a more socialist or even communist view of it would be to see how we all affect each other and contribute to each others well being, even if we can’t all do the same physical or mental activities.

When I am reminded of this, the dread also creeps up on me occasionally. And sometimes it also brings me ideas of suicide. Thinking what purpose do I have, if I’m only a burden, wouldn’t it be better if I wasn’t here, if I wasn’t taking up space? It’s easy to hit that wall once in a while. Some things we try to not think about because they’ll only make us want to kill ourselves. No, I’m not speaking for everyone with a disability, but I do feel from what I’ve seen other people talk about that I am not alone in this.

I’m currently in a situation in my life where me and my partner is looking for a house or flat to buy, and we need money, and a mortgage to be able to do so. Me not having an income, and not being able to take a normal job without great risk to my health, is becoming a problem, and it’s becoming a problem for me personally because it’s causing me pain every day. Even if I know I can’t work, I still started to look at jobs and trainee positions, and especially equal opportunity employers.

So, while it’s possible to think of it as only mind ghosts, it’s also a reality of pressure we find ourselves in. What can we contribute or produce to be allowed to live?

This also reminded me about my own goals, that I had in the 3rd quarter of 2019, when I relaunched my Patreon. At the time I was high on a summer of energy, and recovery and being so much more healthy than I had been in years. I was ready to take on something new, and I felt like the week of conferences had proved that to me. I was ready to head out and do all the things. Then I was hit with the flu, slipping down the stairs, another cold, and winter stomach flu in the span of 2 months, and it really drained me. The last one was just around Christmas, and I’m still recovering from it all.

So, what about admitting defeat? I have felt defeated by my intentional goal of actually going out and seeing the world and attending these conferences, but having been unable to for the past 4 months. Therefor I’m deciding, for my own health’s sake, to take a step back, and focus on what works for me. To focus on what I can do right now. And I know that I can write right now.

Since I don’t know how much I can write yet, I want to set the goal a bit smaller than I would’ve attempted otherwise, and it is that I want to write one bigger thing once a month. One article that I work on through the weeks, and if I have 2-3 shitty weeks that month I should still be able to publish something.

As you can tell, I’m still feeling the need to produce something of value, even though I said what I said at the beginning of the post. If you follow me over on Mastodon, you may have just seen me published a big thread about asking for support, so I am going to end this blog post with an actual call to action, where, if you read a few blog post last year from here, or just read this and felt struck by it, and recognize yourself in it the idea of labour being the only measure of worth, please consider supporting me on Patreon, Liberapay or Ko-fi, a monthly donation if you can, of even just $1, will go a long way to help me settle into my new life, and let me focus on something that has always been with me, and that’s writing and connecting with people.

I hope to connect with more of you when sharing my thoughts and reflections on things and topics. If you’re curious about other writings I’ve done here’s a sample:

“Tech”:
Activity Pub (the Conference)
On Mastodon and Nazis
“Political”:
On Bi Visibility
Deradicalization and who can safely do it
Vi ska inte behöva… (in Swedish, about healthcare)
Poetry-ish:
When Life Beats You Up
Crutches
A Whiff of Fallen Leaves
Sick and Sick

Thank you for listening.

What a year 2019 has been!

This has been one heck of a year, for a lot of reasons. Very few things went as planned, but over all it has been a very giving and interesting year. I want to sum up some major plot points in my life, and reflect on it slightly. This may end up much longer than I intended, but here goes!

January through March

The beginning of the year was kind of hectic, I was still studying while very fatigued and I managed to hurt my arm just before an exam which made everything extra hard. I spent time with some of the other students who failed that same exam and we did our best to get through the re-exam. This hiccup meant I wasn’t getting my student loan in the beginning of the year, which was a bit painful. By a bit I mean very painful. Being without money caused a lot of internal, if not external, panic.

In early February, which was when that re-exam took place, my partner went home to the UK for Lunar New Year. I had completed my Bachelor’s paper the spring before, but needed one more course to complete the actual degree, I took those points during the fall. So, by now I had sent in to get my certificate and it arrived while my partner was away. It had happened, I had finished my degree!

When he came back to Sweden one of the first things he said to me was that he wanted us to move back to the UK. It was something we’d talked about a few times and decided against, until now (then). We had just found out that his sister was pregnant, which was also one of the reasons we decided to move. It’s very rewarding being around infants and small children in general, so this was a big draw for me.
Another one of the reasons for us not moving back to the UK was that I had not finished my degree yet, which was why we lived in Sweden to begin with. With me receiving my degree certificate, it meant that I was now done. Even though I was currently enrolled in studies for a lot of practical reasons (but that’s another post which may or may not happen).

In January / February I also worked on reviving the ForkTogether project with a few other people. We published a blog post about it, where we announced the new name, Florence, and got to work. This blog post will probably not talk much more about Florence, but it’s a project that’s very dear to my heart, and something I will keep working on in 2020, as well, and our latest update is here.

Overall my health was pretty bad at the beginning of the year, I had very low energy and I couldn’t really do much, walking anywhere left me exhausted unless I wore compression socks. Over Christmas, my mother had offered to buy me compression tights to make my life easier, but since I had been considering going to see a private doctor I, in turn, asked her if she would be willing to put that money towards helping me go see one, as a way to look for the underlying cause instead of just treating symptoms. She agreed. I don’t remember when I actually made the appointment, but I made it for April 9th, a day before my birthday. And it was in Gothenburg where my mom lives, so I planned to go see her as well.

I don’t remember much of what I did in March. I know I was studying this term as well, but I don’t remember what we did. I’m going to assume I was trying to study as much as possible, while planning for moving to the UK, and spending time with my partner before he went over there. The plan was that he’d leave early April.

April, and the beginning of change

April came, he left to the UK a week before my appointment and I went to my mom’s place. We went to the doctor together, who had scheduled two hours for me. I was finally getting checked out properly for the first time in probably 7 years. Yes, the care centers had done some small things to help, but a lot of the time they just let things slide and we had to start the process all over again, and most of 2018 I had just given up on the Swedish health care system.

My appointment was in the afternoon, so I had missed the slot for some of the blood tests, and they sent me home with a kit to bring to any lab at any clinic. However, this did not go nearly as smooth as I would’ve liked it to. I ended up having to go to two different places and none of them knew what to do with the kit. Turns out that the instructions got lost somewhere along the way, they were supposed to be inside. Eventually I got the blood drawn and I got to go back home and rest.

At the appointment my new doctor and rheumatologist had quickly diagnosed a few things which felt obvious, EDS (Ehlers-Danlos syndrome), and a high possibility of Fibromyalgia, she suspected psoriasis but mainly in the nails. I was also given cortisone to rule out other rheumatic issues. The blood tests would later show that I also had hypothyroidism.

Towards the end of April I received medicine for hypothyroidism, Levothyroxine, and it started making a difference within 3 days. Which was when I noticed it by biking. Biking had been something that while it was easier on a lot of my other body parts, like knees, hips and neck, it still always felt like I was dying. Not because I couldn’t breath, but rather because I didn’t have energy in my muscles. That said, breathing was hard too, but more like a weight on my chest. I had never been able to fully put it into words, and most definitely thought that I had worn myself down so much that I couldn’t bike because I had 0 fitness. This was something which had stayed with me for 5 years, at varying degrees. Logically I should’ve known it wasn’t my fitness level, since in the beginning of this happening to me I was going to the swimming pool regularly. (I could go on a tangent here on how I most likely have POTS as well, as it’s common together with EDS, which was somewhat alleviated by the swimming pool because of the extra pressure it put on my body, remember me mentioning compression socks?) Going to the pool was the few moments I felt sane. When I stopped going was when my health started to deteriorate more, and with less swimming, and less relief it was harder to go back to swimming and get that relief. Most of this I did not connect the dots on until quite recently.

So, it was the end of April and I could bike without feeling like I was dying. Mind you this was just the first step in getting stronger, as it improved over time. I had two other benchmarks which really helped me realize what a difference it made, the 2nd one is completely lost to me right now, but the 3rd one was biking on the highest gear without problem (I had been biking in the lowest gear for the past 3 years, at least).

In April I had also gotten in touch with someone who needed a dog sitter, and as such I met Hamilton. He became a staple of my daily life, and also helped me with some of the benchmarks in my health. I was still sick when I had accepted this, because I felt like if I’m home all day every day, unable to do anything, I may as well do that and make a small amount of money.

May and meeting Hamilton

In May I was still trying to stay up with school, and study. However about halfway through the month I threw both hands up in the air and said “FUCK IT, I need to live, and I’m finally able to do so”. I came to the realization that I had been residing in Malmö for 8 years, but I hadn’t LIVED in Malmö during most of that time. Now was my chance.

Most people that know me know that I’m polyamorous, it’s not something I hide, but for the sake of this particular blog post, I am not going to chronicle what I got up to once I got some underlying issues treated, and got energy back, while my partner was in a different country for 5 months (which is how long we stayed apart). I will however say that I was quite lovely to feel my sex-drive return, and me just being kind of high on life and willing to go out there and meet new people. And for the love of everything that is holy: Do not read this as I only went out to meet new people to have sexscapades with.

Anyways, I made friends with some more polyfolx, and went to two meetups, one which I arranged (for women and trans folx). The first one, the pub meetup, I met up with an enby whom I become close friends with on Facebook first. We talked about lot of things we had in common. And slowly it turned out that we were both the same age, and born in the same city. We doubled checked the early background, but we had not crossed paths in our youth, however we could connect to childhood memories with each other because of the spaces we had occupied while not at the same time. We had even moved the same path to end up in Malmö, and it was just very serendipitous moment to connect with them.

Towards the end of May there was a Poetry Slam competition in Malmö, the Swedish Championship. I went to that event alone, for 2 of the days I mostly hovered, and the 3rd day I dared to speak with people a bit more.

One of the evenings I went and sat at the bar at the afterparty afterwards, and just relished in the feeling that I could sit in a crowded and loud bar and not get completely exhausted from it. So I sat there alone and wrote for a few hours before I decided to go home.

The poetry slam did inspire me poetry wise, which is to be expected. I wasn’t able to get a lot of the inspiration channeled into anything, probably because at this point in my life I was all over the place. I was just about recovering energy and able to experience life, and after doing one thing I was always ready to go on to the next thing.

The last evening I made another friend whom I’m definitely still staying connected with. Another serendipity, we only started talking the very last night, but seemed to get each other very well and understand certain ways that the other thought or experienced certain types of things. It’s hard to explain, but I feel like we both managed to share an experience with each other that the other understood well.

The mornings I spent with Hamilton, and the afternoons and evenings I spent at the Poetry Slam. While the dog may not be written about a lot, he became very important to me during these summer months. He kept me company and forced me to rest when I needed it to. He’d insist on me sitting on the sofa with him instead of the computer. So I’d often sit down with a movie or series and have his big head in my lap. He was with me about 2-3 times / week.

June, July—Diagnosis confirmed

Now we’re up to June, as the Poetry Slam ended just at the beginning of June, and the summer really began to hit us. Very warm days started to come on, and I realized that Malmö is a very underrated Beach City. Like it’s less than a 20min walk from the city center (or central station) to the beach, by the ocean! And I began swimming regularly, almost daily, even starting a group on Facebook just for women (and trans people) looking for other people to go swimming with.

Now, I want to reconnect to some of my medical stuff that I was going through. I was following up with my doctor in early June, and while the cortisone hadn’t really done much while I was still exhausted from not getting energy from eating, I later asked my doctor for another course of the cortisone. This time my pain levels went down significantly. Unfortunately, while I was on this cortisone course I caught a really nasty cold. I had gone swimming in the ocean, which probably wasn’t the best idea, but I was just so happy to finally be able to live, and I had trouble stopping myself.

This cold lasted for almost a whole month (there’s more details here, but I lost my voice for 1.5 weeks among other things, and it wasn’t just one cold, but rather one cold and then a bacterial infection, bla bla), from end of June to mid-July, by which I received a course of antibiotics from my doctor in Gothenburg. I had noticed that the infection made most of my pain go away. And she was like, “okay that confirms you have an auto-immune”, at this point I was diagnosed with Psoriatic Arthritis.

I got prescribed Etoricoxib to take down the inflammation and reduce the pain. I think I was lucky to get prescribed this immediately, it happened that way because I already knew that my stomach was too sensitive for long term Ibuprofen. And considering I had just about recovered my stomach after 5 years of suffering with issues, I did not want to screw it up again. It actually worked very well, even if I’d complain in the afternoon that the pain meds stopped working. But days I did not take it were a lot worse, which helped keep me humble. It was prescribed to be taken every day.

So, the antibiotics helped me, and I began feeling better quite soon. My mom had noticed major changes in how much energy I had, but was still often very worried. However, she had her own benchmarks to notice what was up. She’d reflected on that after I was out and about I was still able to go with her to the store. In the past I’d rarely even been able to be out and about while visiting.

This had marked my 3rd visit to my mom’s place since the first doctors appointment. And it was lovely that I had the kind of energy where I could just pack up my bag and head to her place on very short notice. And I could go visit a lot of my old friends.

End of July, Seeing Old Friends

Speaking of visiting friends, in mid-July after this appointment and antibiotics I went on a big trip to visit friends and family, because I wanted to take the opportunity before I moved to another country.

For this trip, as I didn’t know if I was getting better yet, I only booked one leg of the journey at the time. I started in Gothenburg, since I had been to see my doctor. And over the next 2-3 weeks I went through 5 cities: Kristinehamn, Västerås, Stockholm, Falun, Gothenburg again, before I returned to Malmö. I had originally planned to go through Uppsala as well, but those plans had to change unfortunately, lucky I didn’t book all tickets in advance.

Through these cities I was visiting a load of old friends, catching up, going to museums, attending my first 40th birthday party of one of my friends, visited my grandmother’s grave, strolled through Stockholm on the hottest day of the year (thus far at least), went swimming a lot, worked on my tiny netbook (which a friend helped me install an ssd drive and Linux to revive it slightly), I got to spend time with my family, both my mom and my dad (who live in different cities) and my sisters, their family and kids.

At this point I was doing (and had been for a while) so much every day or every few days, compared to before I got any medicine, that my sense of time was very skewed. I had gone from being able to do one thing a week, usually going to class, and then spending the rest of the week at home, and now I easily did 3-5 things in a day, and rested to keep my balance. The biggest difference when it came to resting was that it could be enough to just lay down for 30min, in order to ground myself, or watch an episode or two of a TV series, before I was recharged enough to head back out on more adventures.

August, packing to move

Finally back in Malmö, it was already August, and it finally hit me. I was moving, and soon. I had only 3 weeks left, and it was time to get a battle plan together, I still hadn’t really started to pack that much stuff. At the same time I needed to wind down from my trip.

I honestly do not know how I managed to get through the last push of packing, selling and moving. I was lucky with a few things, I got the bed sold for a decent price, and a friend was just moving back from Sweden after a few years abroad, so she came by and bought a lot of my stuff.

There were some hiccups with the moving company, who wanted to come after I needed to be out of the house, and some fun things like that. Which were incredibly stressful.

At the end of it I just got through it thanks to pure stubbornness. I cried through some of the last of it. But the very last night, I was with one of my new friends, and we had really good food and watched a movie together (at their place because I was staying there), and they helped me just wind down, now that it was all over.

September, visiting Prague

In the middle of moving I went to Prague for a week, before I went to the UK. I was in Prague for 2 conferences, first something called Rebooting the Web of Trust, and the other conference was ActivityPub. This week I got to spend with old and new friends, but none of whom I’d ever met before.

It was an interesting week, which I definitely should’ve written it’s own blog post about, as I’ve not actually done much reflecting on Rebooting the Web of Trust, yet. And we’ll get to in this blog post why I haven’t nearly written as much as I would’ve liked to this autumn.

I made two very good new friends, people whom before that week was even over felt like I’d known forever, and they seemed to feel the same thing. And the other people who I spent a lot of that week with definitely are closer to me now than they were before.

I think one of the biggest things for me this week was, balancing and recovering from the moving stuff, even if I was in the middle of it, and busy with these two events. I was definitely testing my boundaries, and stretching them, in a way which was definitely risky.

I was invited to come to Prague as a speaker for the ActivityPub Conference. And it was a great experience meeting everyone, as well as finishing off the week in Prague with all these people working on different things within the same space. I even wrote a really big blog post about it.

Entering the UK

I arrived after a really long week, and a long day, at the Manchester Airport. In Prague I had tried to get on the wrong plane because I was just completely drained, and then I started crying because… well I was completely drained and stressed out. Luckily I caught the right plane, and I was finally seeing my partner of 5 years, after being apart for 5 months.

When I first arrived I just slept, for a week probably. I was just so tired. I kept being tired, and even into October I wasn’t feeling better. And I began to worry that I had screwed up, that I had burnt myself out even more by doing all the things I did during the summer.

Lucky for me it turned out that I was on a too low dose on one of my medicines because me and my doctor had experimented with a lower dose, but because of the move we hadn’t followed up to see how it was going. It was one of my anti-depressants that had been on a lower dose for quite a while, and I believe that the additional stress just made it harder to recover without that extra crutch. Towards the end of October I upped the dose again, and started to feel better.

In October we also had family wedding celebrations to attend to, and we both had it close to where we live, as well as going to London for a weekend. This mostly took up most of October both time and energy wise.

November, December, cold season

Early November the entire family caught the flu. Me and my partner caught it worst, and were more or less strapped to bed for over a week each, and he took much longer to recover than I did.

In early December I caught another bout of a cold, and I slipped down the stairs, and was sick for about 3 weeks. During this period, I was so tired of being sick, but I wanted to not repeat the summer’s mistake, so I did my best to rest properly and get better.

Just before Christmas I was finally rid of my cold, and able to spend it with the family (my partner’s) here in the UK, instead of going home to Sweden like I had planned. And on Christmas day the entire family got hit with the Winter Stomach Flu. This lasted for about 3 days.

And this is literally where the year ended. The last 3 months of it I was very low energy, and sick most of the time, or drained due to too low medicine.

If any of you wondered where I went during those months, that’s pretty much the explanation, and it’s made some of my projects suffer, and me emotionally suffer as well. Because I’m happy about being here and meeting a bunch of my new and old friends here in the UK as well.

Hopefully 2020 will be a much better year, and we’ll see more of each other now.

When life beats you down

I moved to another country, it was okay that I felt exhausted.

I felt like I should be recovering faster, and be back to my new old-self.

I didn’t realize that I was out of sync with medication.

As well as attending family weddings.

As well as visiting new friends.

As well as…

I was just exhausted. And I didn’t admit it. I didn’t know how to deal with it.

I was supposed to be better now, stronger. I had moved countries, packed every box in my own.

I was strong and on top of the world. Why was I zapped?

The medicine imbalance took months to figure out, and a day to fix, or so I thought.

I felt an initial surge of energy. Slept 5hrs. “I’m back”, I yelled. Immediately heading out again.

Drained. I had to start over again. The self-destructive behaviors started creeping in.

Screwing more with medicine, not sleeping, eating too much sugar, not leaving the house, gaming all day, losing time.

What was I protecting myself from?

Nothing. But I was still out of balance, still not ready.

I decided to rest. To take all the time I needed.

Then I caught another cold. Every muscle in my body ached.

After two days it felt like it broke. My throat was still sore, but I was ready to take on the world, again.

Then I slipped down the stairs. Only half a flight.

More worried about the pistachio shells flying across the carpet, than my newly burnt knees.

I heard the panic in everyone’s voices, as they rushed to check on whoever fell.

I would’ve gotten up. Usually.

I felt defeated.

I was finally going to get shit done, and this happens? Why?

I just sat, collected my legs.

Are you alright?

“Nothing’s broken”. Other than my soul.

Crushed by obvious defeat.

This fat fuck doesn’t leave the house and now she can’t even get down the stairs on her own.

Intrusive thoughts.

I had only slipped.

I had slipped because my feet were slightly less rugged than the day before.

Now my knees were rugged instead.

I cried.

Eventually got up.

Went back upstairs and asked for a cup of tea.

To nurture my soul.

To reflect on the pain.

No blood.

No swelling.

No bruising. Yet.

Pantless, the revealed burns, just raw nerve endings, breathing in the oxygen.

“I was ready to take on the world again today.”

Maybe tomorrow.

Poem: Crutches

They are my support
To help me walk,
Every day.

If I lose one
I make damned sure
To keep the other one.

While slightly imbalanced
I can still walk
With only one crutch.

Tomorrow
I'll be back on two
Balancing myself again.

If I drop both,
Insisting I can walk
Alone without them
I hurt myself more
Causing pain, tears.

Tearing up wounds
With each step

Tore down my defense
My support
My crutches

Neglecting myself
Hurting myself
Killing myself

Mania,
triggered,
paralyzed.

Breathless.
Through the dark.

Recovery.
Day by day.

Silence. Alone.
With this pain.

Never will I drop all my medicine on the same day, ever again.

a whiff of fallen leaves

I wanted to describe the smell
Of the fallen leaves, rustling
Smelling like only fall leaves do

Different than the decomposed
Spring smell
Still indicative of season change

What words do I use
For these dry heaps
Of fallen leaves
So you can smell them too?

Do they smell the same
In every place where leaves fall
In the fall?

The smell is stronger
When moisture meets each leaf
Something about the surface
Connecting with the air,
Spreading small molecules
Flowing through the air
And finding their way there

To your nostrils
Their final resting place
In the fall, when they calm
You down and tell of the ending season

On How do you make time to write?

When I read this question today the first thing, and the truth, that came to my mind was “I don’t”. Then I wondered why? Why don’t I make time to write?

The problem isn’t that I’m not making time to write, the problem is that in not making time to sit and be bored.

Taking the time to do nothing, walk the forest, or sit in silence. I realized, by being asked that question that I don’t need to make time to write, I need to make time to fill my head with the things I want to write. Then the time writing them doesn’t have to be as long.

A silent ride on your commute, no music.

An evening without movies, or games, or books.

I fill up my alone and still time with sounds, or I sleep. I don’t give myself those minutes I need to just put two and two together to want to write something.

When I was younger it was incredibly important to me to write every day on my blog. That was the only way you grew I felt like. On the other hand I had a close friend 10 years ago, who took the time to think and waiting for the puzzle pieces to fall into place before he was ready to write down his posts.

I don’t think this is for everyone. I don’t think it was always for me. I used to write things out as soon as possible, even live blog events. Maybe I did that as a process to be able to move on to the next event, conference, happening to cover. I needed to clear my head.

These days I’m more like my friend, I wait for a lot of puzzle pieces to form in my head before I write them down. This works most of the time, a lot better than trying to write when you just have a tiny kernel, I find waiting for the cup to be full makes it easier and less painful to measure (sorry about the mixed metaphors).

This line is thinking is now more relevant because NaNoWriMo literally just started. Where people are pushing out 50k words in a month. And I wanted to participate, in a way that fits me and where I am now. With this post in mind, I think I’m going to take 60 min every day, while I’m alone and just sit with my thoughts, and see where it brings me.

That said, I also believe that learning new things is an important part of writing. Reading new books, from new cultures. Reading experiences from people who are not like you. Find some piece of history to engorge yourself in.

Never stop learning, and you’ll always have something to write about, just remember to give yourself pause, and make space, rather than just time, to find something to write. Give your head rest, and take a deep breath.


If you enjoyed this bit of musing, and would like me to be able to write them more, feel free to head over my patreon and pledge your support!
Alternatively, check out my support page for more info.