My 2026 Word of the Year

Posted on by Astrid

Hi everyone. I’ve been debating for a few weeks now whether to choose a word of the year (WOTY) this year. I did so some years, but haven’t had a WOTY for a few years. I just came upon Deb’s announcement of her WOTY and this gave me the kick in the behind I needed to decide on one.

So what will my word of the year for 2026 be? I’ve had a few on my mind, but finally settled on: EXPERIENCE.

This year, I hope to experience more of what life has to offer. This includes being more mindful of my daily activities, purposefully choosing ones that enrich me. This includes crafting, cooking and baking, blogging and writing in general and reading. Today, despite struggling quite badly and feeling depressed, I managed to craft and write.

Like I shared when writing about my hopes for 2026, I also intend to expand my social circle. I feel rather insecure about this, being that I’m nearly 40, autistic and multiply-disabled. However, I’m embracing the opportunities to socialize that come my way. Today, I did try out Discord again in hopes of finding the community I used to find on forums back in the ’00s. It’s not the most intuitive social networking app, but I’m getting the hang on it.

I should say that I used to do with Discord servers what I do with Subreddits and Facebook groups, ie. I collect them as it were. This needs to stop. After all, social circles aren’t based on the number of likes or comments on a social media post. It’s about quality, not quantity. I struggle with this. It’s probably in part related to my anxious attachment and the fact that I’ve had more than a few groups I was deeply invested in only to be kicked out. Then again, I didn’t invest in genuine personal connections other than with my wife. That needs to change. If I want to experience all that life has to offer, I have to offer a part of myself too. This is scary, but I hope it’s doable.

2025: The Year in Review

Posted on by Astrid

Hi everyone. It’s time for my yearly review. This year wasn’t exciting in any particular way. I’m not sure whether that’s actually a bad thing though. I mean, I didn’t decide to move yet again and that’s a good thing. Most of the bad parts of the year not being exciting are exactly that: it was incredibly boring.

That’s also what led to the most significant lows of this year: the fact that, for a while, an extra cup of green tea at 9PM would be my highlight of the week. I have, over the past couple of months, been able to make this cup of tea a regular occurrence, so in that sense things are improving.

When I looked at my hopes for 2025 a few days ago, I noticed most of them weren’t particularly ambitious. I mean, I was hoping to improve my crafting and do more cooking. I can’t remember whether I had already tried to ask ChatGPT how to build an armature for a standing polymer clay unicorn and, as such, whether this idea was behind that hope. If it was, I can safely say that I didn’t achieve this. I must say I haven’t improved my polymer clay skill much at all. I have, however, picked up jewelry-making again and my wife loved the necklace I made her.

I also did a lot more cooking than I did in 2024. It wasn’t as much as I’d hoped when the behavior specialist promised me early this year that when my one-on-one got approved, she’d allow for a weekly cooking activity. I am cautiously optimistic that this will change in 2026.

I had also hoped to find a physical activity other than walking that I could do regularly. No such luck. I’m not sure this will change in the new year.

Tapering my meds was one of the major successes of this year. I can’t remember what dose of aripiprazole I was on at the start of 2025, but I’m now down to 11mg a day and have also been able to completely go off my pregabalin. I also must say that I’ve been able to stay relatively mentally stable. Yes, I did have a deep low in July, which is once again down to the fact that I had been going through the motions for so long that life felt like I was not really living it.

This year was also the year we had yet another Center for Consultation and Expertise consultation. I haven’t yet found out what the consultant is going to recommend even though she said she was going to let me know by mid-December. I doubt it’s going to lead anywhere significant, but maybe I’m wrong.

Finally, this year was the year my wife and I were trying to figure out our relationship status. Over the summer, we were planning to get a divorce, but this eventually didn’t happen. We’re still unsure as to how to align the legal situation with our actual feelings for each other and it looks likely divorce will be on the table sometime within the not-too-distant future again. Thankfully, we’re both pretty sure that we’ll always be best friends.

One of John Holton’s writing prompts for this week is what letter grade we’d give 2025 and why. I’m clueless about letter grades, so I’m going to rate the year on a scale of 1 to 10 as is the grading system here in the Netherlands. My rating would be a 5, which is just about below-average. Things that would improve the grade I’d give next year, are mostly related to my having more meaningful activities.

What If 2034 Isn’t the End After All?

Posted on by Astrid

Hi everyone. I’ve been struggling quite badly with lack of meaning in my life lately. I mean, last week was pretty productive, but unfortunately that didn’t last.

Last Sunday, I was also discussing my comment that everything will be okay in 2034 with my wife. As regular readers of this blog know, I got the idea from the book 2034. Not that I’ve read it, but it’s about the next world war and I somehow decided to flip things around and say that everything will be okay. Originally, I was sort of serious, like I used to be about 2021 back in the early years of my blog. Now though, the only way I can picture 2034 is it being the end of the world in some kind of nuclear war.

My wife put things into perspective for me, saying that while it’s possible there’ll be a war between the U.S. and China in the coming decade, Europe most likely won’t be involved. That doesn’t mean there aren’t other risks, of course, but it sounds unlikely that the world is going to be blast to hell in 2034 or before.

This, however, doesn’t feel entirely comforting. The thing is, I’ve built my life around the idea that I won’t have ten more years to live. I’ll be 48 in 2034. That isn’t young, but it’s way too young to be dying of natural causes.

It somehow feels safe to say I will die in 2034 anyway. This allows me the luxury of not making any long-term plans. It allows me to take life day by day, week by week. It also allows me not to worry about my quality of life in the long run, which if I do think about it, doesn’t look good. My one-on-one has to be reassessed at the end of 2026. I’m scared that it’ll be cut and I’ll be forced to take more sedating medications to deal with the resulting challenging behavior. If that’s my life from 2027 on, all I can hope for is that it doesn’t last long.

Also, if life drags on past 2034, there’s no urgency to help me improve my quality of life. Not that there is according to the powers that be anyway. The team manager literally asked me what I’d do if everything isn’t alright by 2034. This was six months ago, when I was actively considering ending my life. I’ve not been actively suicidal since, but my life being finite has been on my mind all the time. And I’m not sure how I feel about this. On the one hand, I really want to make the most of the remainder of my life, but on the other hand, I am paralyzed by, well, I honestly don’t know what, and this leads me to think that I’d be better off dead.

I Don’t Owe Anyone a Grateful Heart

Posted on by Astrid

Hi all. Today’s prompt for Reena’s Xploration Challenge is quite fitting. Reena asks us to ponder the paradox of gratitude and resistance.

Sometimes, by being grateful, we can bring about change. I am reminded of a story in one of the Chicken Soup for the Soul books in which nurses on one floor were irritated with another floor’s nurses for their constant negativity. Instead of fueling the conflict by becoming negative themselves, the nurses wrote a lengthy gratitude letter to their colleagues. I am not sure whether this was exactly what the story was about, but this was at least the message I took from it. The fact that the one group of nurses focused on the positive rather than giving in to the other group’s toxicity, turned the situation around for the better.

At other times though, particularly when there’s a power difference between two people or groups of people, gratitude becomes passive resignation. In this case, while it can be helpful in the short term to the oppressed person to keep a positive outlook, if the oppressor takes gratitude as acceptance, in the long run nothing will change.

I will give an example from my own life. Regular readers of my blog know that I’ve been accused of having a negative attitude by many people in positions of power, such as my care staff and treatment providers in various care settings. An example is being told I ought to be happy that anybody wants to work here at all. Well, no. While it’d be easier for me in the short term if I could just accept the umpteenth random stranger for my one-on-one care, in the long run it’d mean I’d always get assigned the random temp worker because regular staff would rather support the others and chill out with other regular staff while they can. Besides, even if it’d cost me less effort to resign than it costs me to rebel, I don’t owe my staff a positive attitude. If there’s anyone for whose sake I should have a grateful attitude, it’s myself.

It doesn’t mean I don’t struggle with this whole idea. I feel intense guilt whenever a staff throws some variation of “be happy anyone wants to work here” at me. I am also constantly reminded in my head of my assigned staff at the intensive support home, who was disappointed in me for never having a perfect day even when they’d followed my day schedule completely and had always assigned me regular staff. Which, for the record, never happened.

I, for clarity’s sake, don’t think violent resistance is the answer. When I have a meltdown over some rule I disagree with, being aggressive will always end in me being restrained. However, there’s a whole world between aggression and passivity. And sometimes, unfortunately, the people in positions of power are so caught up in their reality of being the ones to decide, that they (either willfully or not) ignore my less obvious attempts at resistance.

For example, last week I was trying to resist the “one chance” rule about orienting new staff. I tried going along with what the staff wanted, but this only led to further abuses of the rule. I tried talking sense into the staff, but this didn’t work either. Finally, on Saturday, I had the most massive meltdown. I am not proud of my behavior at all. In fact, I really wish I could’ve solved the issue without being aggressive, if for no other reason, then because the staff are far stronger than me and I ended up being restrained. In the end, I thankfully finally got a meeting with the behavior specialist on Monday and the rule got ditched. Now all I can hope for is that my main message, that I have to consent to every individual rule or agreement affecting me unless the behavior specialist uses the Care and Force Act, got through to everyone.

The Good and the Bad: How I’d Rate My Days

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is rather relevant for me. In it, Sadje asks us how we’d rate our day. I’m not going to pick a specific day, but use this as an opportunity to write about the quality of my days and as such my quality of life.

When the Center for Consultation and Expertise consultant met with me last September, at one point she asked me how I’d rate my quality of life on a scale from 1 to 10. I find this difficult to say, as some days just about completely suck while others are okay or even somewhat joy-filled. I said that, on my absolutely awesomest days, I’d still rate them 7 out of 10 due to the fact that I experience pain and other forms of discomfort daily. Honestly though, I’m being optimistic when I do this. Even on my greatest days, after all, I hardly experience any noteworthy things. Like, I consider cooking or crafting to be enjoyable, but is my day really more than just about okay when I have done one of these?

This also signifies that my life could still very much be improved with just a few in my opinion relatively minor changes to my care. However, my staff see it differently, because they believe I can’t do a cooking or crafting activity when I’m in distress and, I believe, they also think I should be happy with just a walk and a dice game each day. Which, honestly, I’m not.

This makes me feel bad. In the words of my assigned staff at the intensive support home, when the staff follow my day schedule perfectly and I get all familiar staff, my day should be perfect. I replied, in my opinion truthfully, that no-one ever has a perfect day.

Now, to answer Sadje’s question about how I’d rate today: I’d probably rate it a 4 out of 10. I was rather distressed due to another incident yesterday. I also didn’t get to do anything other than go for two walks and play a game of Yatzy. I did, however, manage to do some reading and, as you can see, am writing this blog post. This signifies that, despite my distress, I’m still relatively able to function. My days could still be a lot worse. Besides, I had a cup of green tea in the evening. Oh wait, there I was being cynical, because green tea has become my symbol for how I actually feel about my life: when a cup of green tea is the highlight of my day or even week, that’s rather odd.

Am I a Monster?

Posted on by Astrid

Hi everyone. I’ve been struggling really badly once again. Nearly three weeks ago, I had an outburst that caused the second staff so far at this home to request to the team manager that she not be required to support me for a while. This staff used to be one of my three assigned staff. Another was a student and has since left this home to continue her education at the intensive support home I used to live at. The third one is still my assigned staff, but she only works a day or two a week.

With the staff who previously requested to not support me for a while, I’ve since talked things over, though she still refuses to be honest about the thing that got me to be angry with her, ie. her using literally every opportunity to assign me a temp worker. Because of this, I’ve felt like I had to apologize for my anger (which I see is necessary) but she wouldn’t have to apologize for or explain her behavior that upset me. With the current staff, I don’t have this issue, but I do mistrust her for having pretended to have talked it over then decided she couldn’t handle it anymore a few days later.

I realize part of the problem is my attachment anxiety. As a result of this, I mistrust people who try to come close and be there for me, because I know that if they truly knew me, they’d reject me. Which is, of course, true in theory at least: no-one in life is there for anyone else unconditionally. And, given that I sometimes don’t know who I truly am, I worry that I’ll be worse than even I can imagine if I let my guard down.

Of course, it’s also a self-fulfilling prophecy, as you can see from the fact that two staff in the past year have already rejected me. The current one even claimed she wouldn’t.

Even if I’m in the midst of severe self-doubt, I am (almost) certain that I won’t become physically violent if I let my guard down. The problem is that words hurt too, and I can unfortunately say quite nasty things even without meaning them. I mean, there’s been one instance, back at the intensive support home, when I hurt someone’s feelings with a literal personal attack: I said that it was her fault that she got hurt during a fellow client’s outburst. This staff never requested to not support me anymore. With the two who so far did here, my comments weren’t intended as they came across and, while they could literally be seen as hurtful, I didn’t mean them personally and had no bad intentions whatsoever.

I struggle intensely with this knowledge, that I don’t intend to hurt people but that I do it nonetheless. I also struggle to figure out a way to stop this. After all, they are not insults that caused these staff to reject me (though I called them both bad names too). If they were the insults, it’d be doable to erase these from my vocabulary, as I’ve mostly successfully done with certain other words. However, like I said, they were their interpretations of my comments about how they don’t know me that hurt their feelings. This is harder for me to process, as it means being aware of every possible interpretation of something I literally say. This is quite hard for me as an autistic person with virtually no cognitive empathy.

Besides, as I now realize, I probably have low emotional empathy too, as I wasn’t able to predict that the staff was just going through the motions when I thought we’d talked things over. She in fact supported me through an intense movement therapy session and I didn’t pick on her struggling at all. This makes me feel even worse than the fact that I didn’t realize at the time that my words were hurtful.

This low emotional empathy realization makes me feel like I’m a monster. Aren’t autistics supposed to have high emotional empathy? Aren’t psychopaths and narcissists the ones with low emotional empahty? I mentioned possibly being a narcissist to my wife and she denied I am. Then again, aren’t narcissists masters at making their loved ones believe they are the victim? Is all this my attachment anxiety talking, or is there some truth to the idea that I don’t deserve to be supported?

Coming Out Day 2025

Posted on by Astrid

Hi everyone. It’s once again been more than a week since I last touched the blog. I keep telling myself that I should write only to be distracted by other things once I feel able to write. I’m struggling badly, but I know my blog helps me feel connected to the world too. I originally intended to look at today’s prompt for #SoCS or to write a post for #WeekendCoffeeShare. Then my best friend pointed out that it’s coming out day today.

Though I was open about being queer when I first started writing online in 2002 and I was advocating for trans rights on my first blog on WP, I haven’t been very clear about my identity over the past fifteen years or so. Part of the reason is the fact that I’m still figuring things out even now that I’m 39. Is that even possible? Part of the reason though is also fear. I know some of my regular readers are Christians and I don’t want to elicit negativity from them. Then again, is having to deny part of myself in order to please others, actually a wise choice? I remember first starting this blog with the intention of writing from the heart and now I’m not doing that.

So, let’s get into it. With respect to sexuality, I’m mostly asexual but have experienced attraction to women. When I was a teen, I met a girl and felt the butterflies in my stomach, but I never met her again and honestly am to this day clueless as to whether my attraction to her was sexual. I’ve had other fleeting crushes but nothing that indicated I felt like I wanted to be intimate with anyone.

My partner and I are more best friends than lovers and neither of us ever felt any attraction to the other one. In fact, I remember letting her wait for four months when she disclosed she had a crush on me. A lot of our earlier “love” was based on societal expectations. Now that we’re clear about our queer identities, we’ve also decided we will no longer do anything we don’t feel comfortable with. That’s one reason we considered divorcing.

I knew I was asexual for many years, but felt like hiding it because of societal expectations too. Who cares about labels, I sometimes thought. Who’s going to check whether my partner and I have sex? Obviously, no-one is, but it often did feel like I was denying part of myself when I was pretending to be in a sexual relationship. In truth, I’m probably never going to be in a sexual relationship and that’s fine by me. Being emotionally very vulnerable, I sometimes even feel that I can’t maintain the expectations of a friendship. That’s probably why my wife is my only friend. I sometimes try to expand my circle of connections, but it’s really hard.

I do consider myself to be on the aromantic spectrum too, though that’s more complicated than the asexual part. I, after all, did and to an extent still do enjoy giving my wife heart-shaped polymer clay creations. It makes her feel uncomfortable, so I don’t do it anymore.

I still sometimes consider myself a lesbian based on the attraction I can experience. Because one of my fleeting crushes in high school was on a boy, I have considered that I might be bisexual or pansexual, but I’m heavily lesbian-leaning if that’s the case.

With respect to gender identity, I’m cis but somewhat gender non-conforming. I strongly identify with being a woman, which is clear from the fact that most of my online nicknames were/are gendered. I however don’t know how much of this is societal expectations once again and I do find my gender expression isn’t all that feminine. Honestly, in this case, I’ve stopped caring about labels, but then again I realize that’s a privilege too as I’ve learned to deal with the dysphoria I do experience. For example, I don’t have to worry whether my discomfort with my cycle is due to sensory issues, feeling too vulnerable or is actually related to my gender, as I take the birth control shot so no longer menstruate.

All this being said, being queer isn’t a strong part of my identity, but it is a part of it. I am glad I’m able to be open about it now, if for no other reason, then because it felt like I was constantly jumping through hoops trying to avoid being too open about the realities of my marriage.

The Could-Be COVID Chronicles, September 2025 Edition

Posted on by Astrid

Hi everyone. It’s been over a week since I last wrote a post for my blog. I’ve had some ideas on my mind, but I’ve been battling what I believe could be COVID since Wednesday. Here in the Netherlands, all official precautions and regulations were ended in early 2023 and replaced with a recommendation to “use common sense”. Now my institution has always been rather careless when it comes to quarantining people suspected of having COVID and I myself am not the most sensible either when there are no rules.

On Wednesday, in fact, I was cooking burgers for the entire home when this whole thing started. I blame myself for several other clients and half the staff being sick now, but the staff say they would probably have caught it somewhere anyway, just like I probably caught it from a staff coming to work sick on Monday last week.

On Thursday, I was in bed all day, but I felt better on Friday, so I decided to go for several walks and a dance. Not a good idea if I indeed do have COVID, as not resting well enough can contribute to having long-term symptoms.

Saturday, I was in bed again for most of the day but dancing at 11PM in my room again in order to meet my movement goal on my Apple Watch. I then decided I really had to rest, so lowered my movement goal for that day and paused my rings altogether on Sunday until tomorrow.

I’m now feeling okay, but not nearly back to normal. Tomorrow, the Center for Consultation and Expertise consultant is coming. There are no longer any rules prohibiting them to visit me and several other staff are working while having symptoms now too. Besides, I didn’t have a say in inviting them, so I don’t feel in a position to cancel.

I do feel guilty for basically doing what everyone else is here, ie. living my life as if COVID is no longer a threat. I know, I don’t know whether I actually have COVID since testing is no longer a thing here either, but I definitely feel this is more than just a very nasty cold.

Neurodivergence and Emotional Dysregulation

Posted on by Astrid

Hi everyone. On Monday, I listened to an episode of the Navigating Adult ADHD podcast. It was on emotional dysregulation and it’s been on my mind ever since.

I don’t have a diagnosis of ADHD, but have wondered for years whether my emotion regulation issues are “just” autistic meltdowns, whether I have borderline personality disorder like my psychologist in the psychiatric hospital used to believe, or whether something else is going on. So far, I haven’t found a satisfactory answer and, with that, I have not found something that helps.

I tried a ton of medications but none truly helped me, except for maybe my antidepressant. That is, obviously my antipsychotic did lessen my emotional outbursts, but it didn’t do so in a pleasant way. In fact, I only felt irritability or I felt nothing. That’s not emotion regulation but being numbed down too much.

I tried dialectical behavior therapy, which I still believe could’ve been helpful if the clinician hadn’t been so horribly invalidating. I mean, there’s quite a world between going along with every single emotion I describe without question (which I realize could be counterproductive) and telling me, albeit implicitly, that my entire way of experiencing things is invalid. I haven’t been involved with DBT for long enough to know whether it in itself is invalidating or whether it was just the clinician being judgmental.

In the podcast, the speaker described six ways in which emotional dysregulation can show up. I related to all of them, though some more than others. For example, my low frustration tolerance is truly debilitating. So is my inability to calm down. I literally still fret over things that happened at the intensive support home and these influence how I react to my current staff. My spouse and I also regularly fight over both of our (but more so my) inability to let go.

The things I relate less to, interestingly, are things I see as relatively “positive”. For example, I do get slightly over-excited at times, but not to an extreme degree. Then again, the fact that I don’t experience it to an extreme degree, is probably why I see it as “positive”: after mulling over negative things for weeks, I’d love something to get overly enthusiastic about. In reality though, finding a new hobby and buying all the “needed” supplies within hours, isn’t actually good for me financially. I just wish I’d experience that rush of excitement. Then again, when, rarely, I do, it often leads to even lower lows afterwards.

I’m joining in with #WWWhimsy.

Being a Snob

Posted on by Astrid

Hi everyone. Today, Sadje’s Sunday Poser is all about snobbery. I’ve always thought of being a snob as something negative, but being proud of your culture or an aspect of it can be a good thing too. So am I a snob?

In the positive sense, no, not at all. I don’t have a fine taste in art or food whatsoever. I actually love going to all-you-can-eat restaurants and hardly notice that the food isn’t good quality.

With respect to art or literature, my bestie and I have this inside joke about people not having read “Multituli”. We got the joke after a semi-famous Dutch writer having said that people outside of Amsterdam never read “Multituli” and are as such quite backwards. The actual pen name of the author is “Multatuli” and I actually did read his work, Max Havelaar back in high school, but other than a few random quotes, I hardly remember the story.

This brings me to my attitude and, yes, I can be a bit snobbish about my intelligence. I remember at one point talking to my assigned staff, the one who is still a student. She told me she was learning about attachment theory in school and, even though my comment wasn’t meant as bragging at all, it did come across as such to her. I told her I probably knew more about this topic than her. I probably do and this isn’t an advantage at all, hence my not having meant it as bragging. In fact, the fact that I know more about emotional development, attachment styles etc. than most of my staff, is quite a problem for me, as I cannot apply it to my actual life.

As a teen, I was quite a horrible snob, taking pride in my intelligence and my education. Now I realize I’m truthfully quite average. In other words, mediocre. This realization does often lead me to making self-deprecating comments. Yesterday, when my bestie and I were discussing Meta AI, I said that of course I’d objected to my data being used. My bestie commented that it makes sense that I don’t want AI to steal my pictures of my polymer clay. I immediately thought this was sarcasm and explained that, while most of my works are indeed based on tutorials and not all that good, that doesn’t mean I want AI to use them. It was only later that I realized my bestie may’ve been sincere.