Category Archives: Musings

No writing, my brain said, and I said: Okay.

Technically words are getting put on a page. Just not a normally publishing page, except when it’s on social media and in those conversations. Thoughts and processes are still happening.

I shared some plans with a friend, who I’m also in a video chat with right now (we have a twice weekly video chat for a small writing group that keep seeing new faces regularly), about a future bigger article or post I want to write, about some books I’m currently reading. This reminds me I need to return to the post I started about my reading last year. Wonder if I finished it. I had. So now I ended up publishing something even though I didn’t feel like I could write today.

Yet I’m still writing this. I guess that’s why it’s such a common writing advice, just write anything that’s in your head, even if it’s the echos of “I can’t write today, why can’t I write today, what are you doing brain, why are you like this”, and maybe eventually you get somehere. Once you trigger the right pathways in your mind you can maybe keep going. Heck, today it even helped me write this, as well as publish the post I had forgotten that I had finished.

Things are definitely moving forward, and that feels interesting and cool. I had been so proud for the past week or two about my progress with writing, I was often finishing one post during each writing treat session (the chat with friends), and starting another, or starting one and finishing it and reviewing my drafts.

Actually dipping back into my old drafts has been incredibly liberating, because it’s something that’s been nearly impossible for a few years? It’s been very hard for me to go back to a text if I didn’t finish it the first time, or the second time I wrote on it. But because of health reasons I often couldn’t finish it in one go, was it pain, or was it brain fog. I’d have a short spurt of inspiration that I needed to make the most use of. I think my anti-racism for white people blog post took me 1-2 years to actually finish and publish.

I do think it helps my process these days that I am writing about pretty evergreen topics, or topics that are evergreen to me, and always relevant to me. When it comes to a lot of my health conditions and how they effect me from a holistic perspective, that’s never going to go “out of fashion” for me.

There are still articles that were in the now, in the zeitgeist and needed to be written at a very specific time that I was trying to write, but I didn’t complete. However, as life is quite cyclic, a lot of things keep coming back in terms of themes, I do believe there’s a chance for me to come back to it later and keep writing on it.

As you can tell adapting to a slow lifestyle, and not writing about subjects that have to be published right now has it’s pros and cons obviously. But doesn’t everything? There’s never going to be a perfect anything for everyone or anyone. We just have to do the best we can with what we got. Today we got this, out of my brain refusing to let me start writing, and only chatting and checking in with people. And I’m still incredibly happy with it.

Next time you can’t write, you can write about it and share it with us.

Reading this past year, a reflection

Somehow I have read 52 books this year, as of when I started writing this post with 3 days left of the year (2022). I initially wanted to reflect on what I read this year, but I think I’m going to focus on the reading itself.

I never intended to read this much this year, as my goal was to read 24 books, but I kicked off the year with a 3 month Audible subscription, because the prices was too ridicilous, and I used their library of “included” books to read as much as I could in the beginning of the year. Which helped me remember that there are audiobooks at libraries, and they are available digitally these days.

I think it’s very relevant to add that at the end of last year (2021) I had discovered that my eyes preferred reading with a purple filter, and how much I’ve been struggling with reading my entire life, which was a lot to process. And this realization made it incredibly hard for me to read with my eyes so that’s where audiobooks came in. All the books read this year, 2022, except for one were audiobooks. And the one that wasn’t was just the last few poems of a poetry collection. I did try to start reading with me eyes a few times, with my purple overlay, and eventually with my purple glasses, but it was a bit too much strain. So I just kept slowly enjoying audiobooks instead. It wasn’t always intentional to read with my ears instead.

I just kept listening to books, while doing chores, while going to bed, while taking walk. This took a slight hit when I got my dog in May, because during our walks I needed to pay all attention to her, but eventually we settled into a routine which allowed me to listen to a book with one ear while still paying attention to and working with her. I’d use it when I went grocery shopping, and all in all it racked up a lot of minutes.

I think there’s something to be said here about finding out what works for you. Finding out if an audiobook is better, if a physical book is better, if an ereader is better. Do your eyes need accomodation? Do you need to listen at a higher or slower speed to pay attention? Etc etc. I didn’t realize for years, even while I was studying literature that I needed accomodation, or that those accomodations were even available to me.

It’s easy to expect or hope or believe that there’s some extra value in reading more books. I don’t necessarily think there is. Because I honestly wouldn’t be able to tell you all the titles of the books I read in 2022, because I just kept reading and consuming. I might still remember if I’m reminded, in some cases I’ll have completely blanked, and need to re-read some of them because I legitimately don’t remember.

This coming year, it feels like I might be focusing on a few longer reads, especially with the help of audiobooks. Currently working my way through 18hrs of a great book, and I hope to be able to write a little something about it, or down the line connect it and another few books that have similar themes and talk about how they connect in my mind. This idea actually excites me, it’s like academic work of connecting pieces of texts and theory together, but without the academic pressure, and just doing it because of the pure joy of it.

As the new year has begun, I’ve also started reading text again, both with and without my new fancy colored lensed glasses,and I’m able to do it for short periods of time without too much strain, but also allow myself to rest when I feel like it’s enough. I’m also annotating books, which is so precious, because it’s allowing me to engage with the book in a different way, and hopefully, possibly connect it with other books in a more useful manner in the future.

Here’s hoping that this year ahead brings both writing, and reading, in ways I didn’t expect before. In ways I didn’t think I’d be able to get back to again.

And here’s hoping that you’re able to find a way to read that works for you and that you enjoy.

A Warped Sense of Time

The past month or so, my health hasn’t been too great, and I’ve used Minecraft videos as a chill way to keep myself occupied while my body wasn’t agreeing with anything I tried to do. But, as we moved into January, and on the 7th of January I found myself incredibly confused by the fact that we were only one week into the year. At first I couldn’t figure out why.

As it turns out, when you catch up on video series, that have been made over the lenght of a year, but might just be 10-20 episodes, suddenly your sense of time might get very warped. We did begin at the beginning of the year right? And move through April with pranks, and talk about summer, and then halloween, and then Christmas again, so we must have gone further than a week. Nope. when those episdoes are condensed down to 20-30min, you definitely end up with not quite knowing where you are anymore.

I say that, but what I mean is, if you already have a bit of issues with time, and knowing what day or year or month it is, and having some extra brainfog on top of that, catching up on certain types of YouTube series series might make it worse, but that might be a good thing? Instead of having “wasted” a year, you’ve only lost a week, or three. It’s been over 3 weeks now. Woops.

Anyways. Sometimes time get warped, by the silliest of things, and it can be interesting to take note of it and maybe utilize it, or just enjoy it.

A little something to take with you into 2023

This time of year there’s a tendency to feel pressured into renewing yourself, or kicking off the year right. And I’m here to tell you a secret today.

You don’t have to do anything. Not a single thing.

We tend to put too much pressure on ourselves and try to do it in a way too short a time span.

The last week or so before new year, I just disconnected from work and from writing and publishing, because I truly just needed it. Yes, I had to fight myself a lot to let myself relax. And recharge.

I came across this great text about what does rest mean, during my break. And I need to re-read it. Especially now, while we’re still in a pandemic, resting is more important than ever, because recovering if you get sick will be vital. Please don’t push yourself too hard.

I know, you might be in survival mode, but I have another secret for you: you can still rest. You might have to plan it, and make it part of your survival plan, or do it in defiance of whatever is weighing you down. But I promise you, you can. Even if it’s just a small small ritual before you go to bed, and a tiny ritual when you get up.

Welcome to 2023, time to practice to write the year right for the rest of the year. Take care of yourself and each other.

Grieving the loss of a Normal life

Let’s preface this whole post by saying: Normality is complicated and fucked up. I don’t believe normal is actually a thing or anything to strive for, but rather some lofty ideals being forced upon us by the societies or communities we live in. That said, we can still end up in a situation where we’re grieving our own old normal. That is what this post is going to be about. Let us begin with a quote from an older post of mine:

“I have some grief I need to process, of the life I lost. Of my childhood and everything around that. And I need to allow myself to take that time to process it. It’s gonna be a pain, but I think we can do it. “

Keep trying to get my life back together — me 2021

There are a lot of aspects to unpack here, but for today we’re focusing on the loss of my old sense of normal, my old life. Why did I lose it is probably your first question? And I guess it’s complicated. I’ve touched upon it before, talking about my disabilities, my lack of abilities, the changes I’ve gone through. The burnout that left me unable to speak and think properly for about 6 months. I’ve talked about the pain I suffer daily. Why it’s hard for me to even write and edit to publish my own pieces. Maybe this article, this post, this blog post, this opionion piece, this piece of musing, doesn’t need to be about how I ended up here, but what I’m going through now.

It’s something that’s come up in therapy, and something I’ve thought about in the past, and tried to formulate and talk about, I even found sections in my journal from about a year ago where I touched upon it, how I need to let myself be sad about what I miss, what I’ve lost.

While not all disability is going to be about loss, it’s not necessarily only about the disability, but also in combination with the pandemic that broke out in early 2020. It changed normal for a lot of people, and people like me who were already isolated suddenly got even more isolated. And there’s been an urge to go back to normal from mainly, I guess, “normal” people. People who didn’t understand that their normal affected our abnormal lives, and isolated us further. This is still on going , and also not quite what I wanted to talk about.

I wanted to talk about the immense sadness of being unable to do the things you used to love. In my case something I miss the most is just long walks, something I was still often doing while I was getting sick, because somehow I managed to keep that ability for a very long time. Today, however, I find that the severity of my POTS means I can’t take those long walks. I’m having trouble finding other ways to mitigate my POTS, there’s no real cure for it, but there are ways to make it slightly “better” or manage the symptons for today.

I have not been able to take the time to grieve being unable to fly home to Sweden since moving to the UK, to stay connected with my family whom I felt I had reconnected with just before I moved, because I was able to and had more energy for a few months. I don’t remember how much I’ve written on here about the summer I had my life back in 2019, I think there’s bits and pieces, but probably even more that needs to be procesed and accepted there.

It was a huge change moving, and I was hit with a lot of things all at once once I did. I think the change in not only scenery but the strains of both viral and bacterial infections, the rate of mold spores (I don’t know why but the UK, especially houses, feel a lot more moldy than Sweden did, different house standards I guess?)., etc etc. a lot of things changed, and I got sick again, and I think because I spent about 2 months in bed with various colds and injuries etc, I made my POTS worse, maybe? I obviously don’t have any definitive proof of this, but I do have my suspisions.

Then I did another move, and I don’t think I’ve even covered my CPTSD around moving on here but I guess that’s for another day, and then the pandemic hit. I didn’t get to find a normal me in the new place I was living with my friends, before we were entirely locked down. I didn’t get to learn to find my way into the city center of Manchester. And I didn’t get time to make new friends, I didn’t get to create the kind of normal I had left behind in Sweden when moving here.

I am not going to blame it on one thing alone, but there’s definitely something to be said about a huge disruption in your life getting further disrupted by events way out of your control. There’s only so many things we can control.

How do we grieve this loss? I honestly don’t know. I guess we have to just take time to honor the feelings we’re having, of what we’re missing, and maybe enjoy the nostalgia when it hits. The memories we made, the journeys we’ve been on. And find other ways to be happy. That sounds painful.

There’s no one way to grieve, but I do think accepting a loss is a big part of it. And accepting it can take years and years, even if you accept that someone is gone, or something is gone from your life doesn’t mean you aren’t also still sad about it. You can still grieve it over time even if you’re trying to move on.

I guess the moving on part is harder when it’s forced from normality, but isn’t that always the case with grieving in general? Either it’s a person, or something that you took for granted that is suddenly gone. It’s very rarely we get to sit down and prepare and start the process before the event happens. Sure, dying family might give you time to grieve them before they are gone, but you should probably cherish them while they are there instead of grieving them beforehand.

So the life I had, the 5 months of extra energy and enjoyment I got before moving to the UK, was definitely something I cherished. I was thriving and I was so happy and I was squeezing as much joy out of it as I possibly could, and thinking about it still makes me incredibly happy and grateful.

I think that’s what I need to do, focus a lot on the good memories I’ve made and that I’ll always keep (unless I suffer memory loss again, goshdarnit). And appreciate my life for what it is now, which can be hard when it doesn’t live up to the standards you used to have.

I think it also connects a lot to changing what standards and expectations you set for yourself. How you give yourself compassion about the things you can’t do. How you recognize your limits and stay within those limits to help yourself. As someone with ADHD this is incredibly hard still, and probably one of the reasons I ended up so bad off to begin with. When I have energy I spend that energy, and want to spend so much of that energy on finally doing stuff that I will go way outside of my means, and I probably wont notice for another few days that it was too much (because I also have ME/CFS, and PEM is a piece of shit).

Every time I’m trying something new through medical support, or therapy or accessibility options I’m always hoping for the magic bullet that will cure all, will fix me so I can be normal again. I want to be able to do all the things I used to do. I miss it, and I’m sad it’s gone from my life. Do I still hold on hope that the future treatments and support from medical teams will make me better? Yes. Hope is what’s kept me alive since I was 12, so I don’t think I’ll ever let go of hope.

It’s okay to be sad about the life you had, that’s gone. For whatever reason it’s not the life you have now. It’s okay to grieve it, it’s okay to long for it, hope for a magic fix so you can join everyone else in their cool activities.

It’s also okay to just be you, where you are right now, and find ways to appreciate the life you love and cherish what you have in it today. And if you’re unable to, that’s okay too.

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Struggling, with editing

While yes, it’s true that I’ve been struggling with life in general over the past two years, I’ve also been struggling when it comes to writing. Well, the writing part is usually fine, it’s the editing part that gets me.

An old friend of mine said that most of his blog posts are written and edited in his head before they end up on the page. I don’t think it was intentional as such, but he would just mull over it until soul and fingers screamed to put it all into words and on the page. If you know what you’re writing does that mean you don’t have to edit as much? That’s surely what it seemed like with him. I don’t know how much he edited after he wrote things but mostly he’d be done with it pretty quick.

I never quite understood that I had trouble reading, until I went to see an eye doctor for a stress test and they showed me colored overlays at the end of the test. Because I didn’t respond correctly to the overlays he concluded that I didn’t need any, but if I find they they help me I could of course buy some myself. Since then, this was in November 2021, I’ve had even more trouble reading, because I now know what it’s like to read without the struggles I’ve been having.

I went and bought myself some overlays, and they work great, I did some testing on my own and I was reading the same amount of pages in about 75% of the time. This was truly amazing. I was so happy! So excited to keep reading and such. But there was a few issues, this didn’t translate well to computer work and I’ve spent a lot of time looking for “overlay” solutions to the computer, software wise, but not been able to find anything that would work for me. And holding onto books while using the overlay works poorly with my painful hands, so I have to really take effort and read only for a short while before I get too annoyed.

This led me on to understanding that the best solution would be to have the color in my lenses, in the glasses I’m already using for focused work, but for that I need that prescription (I think, I’m too much of a spoonie to research it too much). So I drafted an email to them, as they had said I could come back if things felt different after I got my glasses in December. I’ve yet to send it though.

What does all of this have to do with editing? Well, part of editing is reading what you’ve already written, and that’s my biggest hurdle right now. It’s so uncomfortable to read it, because I know how much nicer it is without all the interference, that I can rarely get through my own written texts. So I have a lot that’s almost done, just needs some polish and I just can’t finish it because I lost the steam where I was just writing straight from my brain, and reading is uncomfortable so I just avoid the editing part. I publish things where it just pours out of me, or where I’ve used the crafting of each paragraph as a way to ground and stabilize myself.

I think two things will follow from here, I will send off that email tomorrow. And I will try to do writing where I’m focusing on crafting paragraphs about the thing that’s been mulling around my mind for a while. Maybe I’ll be able to write and publish more again because of it.

Enjoying something for what it is

I have another post brewing with the same title, but that one is focusing on adaptation, this one is not.

This week I was catching up on Another Life season 2 on Netflix. And I decided to look up if there’s going to be a season 3, as one does when you finish a season of anything on Netflix “was it canceled yet?”. It brought me back to those thoughts again, why don’t we just enjoy things for what they are?

There seems to be an overwhelming problem with over-hyping something we’re excited about, or hyper-criticizing things that come out. Either it’s because the adaptation isn’t right, or it’s because these actors who were in these other truly epic pieces of television is now in something similar but not as good (yes, I’m talking about Starbuck).

I think that Another Life may have gotten a lot more negative reviews because it had these iconic people from other really good sci-fi, and if this show isn’t better it must clearly be trash.

Yet here I am after having watched season two, and seeing them wrap up the show in a great way that allows for the show either to end here, or continue further, being very happy about having watched it.

I thoroughly enjoyed it. And I know individual tastes can vary. But maybe we need to stop being so hyper-critical about very single new Sci-fi show that comes out.

I guess this is just turning into a sneak peek preview of my post about adaptation and just enjoying things for what they are, because it’s helping me think about more examples and structuring more words in my head.

Maybe that needs to be my Master thesis, a continued conversation about adaptation and fandoms burying a show before it even got a chance to get it’s footing.

Fearing getting better

When I lost my memories I also lost a lot of grudges, and I lost a lot of what I considered the negative parts of myself. I lost the ability to be mad for any extended period of time, partially because I just didn’t have enough energy, and partially because my brain just let go consistently.

As I’m slowly healing, over the years I’ve been given little boxes to unpack with memories, at least that’s how it feels. It’s like my brain has packed these memories away, and now that we’re moving house (both figuratively and literally) I’m finding boxes to open up, and realize that a lot of things have changed.

Like, I’m aware that I’m a very different person. I know I’m calmer, and I know that if I’m mad at you today I probably wont even remember it tomorrow. If we’ve had a bout I’m very unlikely to remember it, and if I remember it the details will be fuzzy.

Some people have used this against me, but mostly I’ve not surrounded myself with people who would use it against me under any circumstance, counting my blessings here.

Yet , I find myself fearing the possibility of that more angry me coming back as I recover more brain power and memories. What if I am only this calm because I can’t do anything else, what if I heal those scars and regain the ability to feel different again?

I don’t necessarily like the person I used to be, and I’ve told a lot of the people who’ve gotten to know me after (a year after I had lost the biggest chunk, and was still suffering quite a bit) that I don’t think they would’ve liked me back then.

I see glimpses of her when I’m tired and lose composure, I guess is the best way to describe it.


I’m wondering if what started as memory loss, is now more calculated, yet I don’t think it is, because I still suffer a lot. but I do prefer this me to the old me.

It also means I’m afraid someone will “tell on me” and share something that I don’t remember, or have very hazy details on. But that’s not entirely true either. I know how I would handle that now if it happened. Their experience of whatever happened will be true, to them, and I can’t nor should take any of that away from them. I can offer my apologies not expecting forgiveness, and explain in what ways I’ve changed, but it’s rare that that’s anything anyone in that situation would want to hear. But I’m okay with that.

People do change, but that doesn’t mean their old behaviour shouldn’t be called out. It also doesn’t mean they have to be hounded about it, and expecting someone to show you change can be tricky too. It’s complicated and a bit I don’t think I’m able to elaborate on now, so let’s leave that thought unfinished.

I don’t have to be in connection with any of the people who knew me back then, just as they don’t have to be with me. A few I still am, and I think our relationships are better now than they were then, which is a blessing.

I have grown, I’m able to handle my RSD a lot better. And I got my ADHD meds, which help me immensely in that regard, and others. I will still get that initial bout and hit of the rejection sensitivity, but then I can calm down within minutes instead of hours. In the past those hours could lead to me ruining relationships I had with people who knew me.

Back then I didn’t know what I didn’t know and now I still don’t know what I don’t know, but for completely other reasons. I’m actually proud of myself for how much I’ve grown and learnt over the past few years. Not even believing that I will ever be perfect, but I will keep trying to do my best, and keep my mouth shut a lot more than I used to.

So. I guess the fear is unfounded, but today I got to put words onto it. And I got to face the fear. I got to see that maybe I didn’t only change because of the memory loss, but it also gave me a clean slate, so I could get a fresh start and rebuild into someone I wanted to become.

New Year, New Chaos

I want to pretend like I usually don’t do it, but I think the problem is I do it all year around: Trying to do all the things.

So new year came around, and I have so many plans, so much I want to get done this year. And this month I’m doing a course that’s taking a lot of my brain power, and yet I still want to try to do ALL THE OTHER things at the same time.

I need to allow myself space to just focus on the course I’m taking. Focus on the reflection that will come after each session. It’s an Anti-racist Classroom, and there’s so much that boils up to the surface after each session, much more than I expected. Yet I want to keep writing, but I am writing the reflections, and I forget. So I try to keep doing the normal writing, like this but I guess this is different because it’s on my mind.

I want to start a newsletter, more news on that some later time, but the response thus far is good. It wont be published more often than every two weeks, but also it may be published more seldom, because I am really bad at doing things on a schedule for extended periods of time.

What would that newsletter be about? Everything probably. A little bit of this and a little bit of that. But a focus on adhd / autism, and disability and queer stuff. Because even though I live with a partner of the opposite sex, I am still queer as fuck.

Anyways, I need to calm myself down and not try to do 50 other things in January than I already am doing. See you in February hopefully.

When your community closes ranks around you to protect you

Content Warnings: Fatphobia, body-shaming, trauma, unsolicited advice (not given but referred to)

Something I did not have on my January of 2022 bingo cards was my community to so fiercely protect me as they did today. I want to cry happy tears about it, but I figured that channeling these emotions into writing is a better thing to do with my time and energy today.

I’ve slowly, over the past few months, been opening up more and more about my trauma. Realizing I have trauma, trying to discern what that trauma is, etc. And today I discovered one piece, so I posted about it online, as one does.

I’ve always been an over-sharer, so when the response I got from one person was that I should just lose weight to lose the trauma held in my body fat storages (paraphrasing), I thought I only had myself to blame for opening up to the possibility of such an attack. But, I knew that I was in a good community, a community that would keep me safe if they saw something wrong with the interaction.

I naturally reported it to my own server, but I also knew that the server that account was on, for the most part was a good place, and that they’d listen to my concern, so I forwarded the report. (This is a mastodon/fediverse thing, so similar to twitter, but people run their own servers).

I also sent a DM to one of the mods on my server, with an extra link to the account, where I also saw their reaction to me blocking them. It wasn’t a good reaction. They inferred things that just wasn’t part of the conversation (like I was popping pills to deal with my trauma, I don’t even know where they got that from). And they (my mod) reached out to the admin on the other server, because they had the same feeling as I did, that this is usually a good place.

The response, from both of these moderators astounded me. I was not prepared to have my friends and community close rank around me to protect me the way they did today. I kept telling them I was about to cry from their response, in the best of ways, but that I couldn’t cry. But now, as I’m recounting this I’m crying. Because I feel so loved and protected.

Talking about trauma is hard, and it’s a journey that I will keep having to tread. I will keep having rough times when sharing so publicly about it. And some people will tell me I’m over-reacting, and I’m almost always going to expect that I’m over-reacting, because I’ve been told my entire life that that’s what I’m doing. I even reported this incident with a wary like “I dunno how bad this is, but I feel uncomfortable”. I did not expect anyone to confirm my feelings or even follow up with such a strong response.

Fatphobia is everywhere. And trauma is everywhere. Waltzing into someone’s mentions to give them unsolicited advice about weight-loss is a bad idea at the best of times, but doing it while they are writing about their trauma, behind a content warning, is just…. tasteless.

I think I have a lot of unprocessed trauma around community too, and how often when I noticed something and reported on it in the past, no one saw what I saw. This happened at school, at university, in guilds etc. Or if someone saw it they wouldn’t say a word. No one ever had my back, I always had everyone’s back to my own demise. So, on a day like today, when so many people showed up for me, there’s nothing else I can do but sit here and cry from how touched and happy I am to be here with you all.

Thank you so much for being in a community with me. I love you with all my heart <3