The Hardest Part of Being Me

Posted on by Astrid

Hi everyone. Today I’m joining the Writer’s Workshop. One of the prompts this week is to elaborate on the most difficult aspect of being you. This is a fitting prompt, as I’ve been struggling again lately.

I could respond to this prompt in several ways. There are things that make me stand out in a negative way in society. For example, autistics are not commonly valued in a neurotypical-centered world. I was reminded of this yesterday when I read an article on the Center for Consultation and Expertise website about the difficulties autistic women in particular face. I for one am often told that I’m only mildly autistic if I’m even autistic at all. This stings, as well my autism diagnosis was confirmed four or five times due to constant doubts among professionals and yet especially for someone assigned female at birth, I’m quite a stereotypical autistic. Yet because I was assigned female at birth, people attribute my behaviors to other things, like borderline personality disorder.

However, autism as a whole isn’t something that is difficult about being me. Rather, the way society doesn’t accommodate me as an autistic person, makes life difficult for me.

Instead, I’m going with a specific trait that might be attributable to autism but also to the brain injury I acquired shortly after birth or other things: my poor distress tolerance and general emotion regulation issues.

These are, like I said, also possibly attributable to autism. Many autistics face these challenges. In my case, it’s however also the fact that these problems are being misunderstood that makes it hard for me to live with them. Like I said, many autistic women/AFABs get diagnosed with borderline personality disorder or the like and treated like they’re purposefully acting out for attention. Emotion regulation difficulties are among the core traits of BPD, yet they are also part of neurodevelopmental conditions like autism or ADHD. I would like to say that even people with genuine BPD aren’t purposefully acting out for attention, but that’s still what the current establishment claims.

I’m struggling in particular with the fact that, occasionally, I seem to be able to cope with distress quite well and at other times, I’m seen as the queen of sweating the small stuff. This has to do with my difficulty figuring out when I’m overstepping my own limits (or when I’m being pushed beyond my limits by others). I honestly don’t know how to break this cycle yet, as when I seem okay, people usually keep adding on to my load of things to deal with. Then when I snap, they see it as me being purposefully difficult. I’m hoping I’ll at some point find a way to deal with this.

Wife #WotW

Posted on by Astrid

Hi everyone. No #WeekendCoffeeShare this week, so I thought I’d find another way to sum up my week. I’m joining Word of the Week. It’s often hard for me to pick just one word or phrase to summarize my week. This week’s is “wife”. I contemplated other words and phrases, like “divorce prep”, “stressors”, etc., but my wife is the one who’s pulled me through most of the stressors.

For those not aware, my wife and I, who have been best friends for over eighteen years and married for over fourteen, will be getting a divorce sometime in the next couple of months. The reasons are personal and mostly irrelevant, as we’ll remain best friends hopefully for life.

Last Monday, my wife found out that the practical part of the reason we didn’t go through with divorce when we were first deciding on it last year, isn’t likely relevant to us. This was a financial reason that I won’t go into. Suffice it to say that, when we saw the mortgage advisor on Tuesday, we found out that even in the worst case scenario, both of us will manage financially.

I do struggle emotionally with the idea of divorce and particularly the fact that our house will be fully signed over to her. Not that I ever lived in that house or that I’m ever going to again. Practically, it’ll make no difference, but it does feel kind of off that I’ll essentially be signing myself out of the opportunity to live in a “normal” house for life. Then again, in reality, I did this in 2019 when moving into long-term care.

On Wednesday, my wife and I established a pattern of multiple, long phone calls. That day we were on the phone seven times. I was struggling with feelings of self-hatred over the ways I’ve treated my wife poorly over the years. Particularly, I was struggling with the idea of emotional vs. cognitive empathy. I’m an emotionally sensitive person or so my wife says, but I still end up hurting my wife and other people regularly. I guess that’s me being autistic though.

I also talked to my wife about how I’m regularly being confined to my room for having meltdowns in the living room. I somewhat see the reason behind this, though not fully because my behavior scaring other residents, isn’t the full story (there’s also some part about my being presumed competent enough to hold it together). However, what I clearly don’t understand is staff’s inability and might I say regularly unwillingness to help me prevent having a meltdown. I’m still kind of struggling with the battle between autonomy and protection.

Yesterday, I was trying to figure out how to get to a cerebral palsy meeting in Utrecht next week. The restaurant the meeting is being held at, cannot be reached by ParaTransit taxis. I might be able to travel by train, but that’d be quite a challenge too. Again, it was my wife helping me make decisions. I’ll most likely not go to the meeting this time, but remain in the WhatsApp group so that I’ll get a feel for the other people attending and have more time to make arrangements. By the way, my wife and I had four phone calls and she said we’d better create a new pattern or we’d have to call each other a negative amount of times tomorrow (7-4-1-etc.). Maybe I’m wrong though, as my wife said the number of times we’d be calling each other had to be a prime number and four isn’t one.

#WeekendCoffeeShare (January 17, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again today. It’s nearly 7:45PM, so I’ve had my last cup of coffee for the day and am soon going to step away from the computer to have a soft drink and chips. Grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Last Sunday, it was freezing still with nighttime temps as low as -9°C. Yesterday and today, the daytime high was 10°C. Mother Nature is having mood swings.

If we were having coffee, next I’d share that, this week, I’ll probably have a perfect week with respect to my Apple Watch activity rings. I’m not all that ambitious about it, honestly, but it’s nice to see a virtual medal. Yesterday, I did complete the New Year’s challenge, which is to close all of your rings seven days in a row sometime during January.

If we were having coffee, next I’d update you on the assigned staff/support coordinator thing. I mentioned a few weeks ago that my assigned staff is in training to become a support coordinator and after that, it’d originally been decided she’d be both my support coordinator and assigned staff, with some stupid comment about me being able to come to anyone with my concerns. That was rather frustrating for me, as then everyone would be making decisions about me and my support would be even more chaotic than it already is. Well, yesterday I was told that my current support coordinator will remain my support coordinator for now and my assigned staff will remain my assigned staff.

I did have an argument about this with another staff today. There’s been made a decision about my showering routine which she disagrees with and she’d been telling me how she felt about it. I told her to stop coming to me for changes to my support agreement, instead going to either my support coordinator or assigned staff. She then claimed that she would no longer be doing fun activities with me, as that’s an assigned staff’s job too. That’s not true and it felt like she was using black-and-white logic. Unfortunately, this particular staff isn’t very able to accept criticism.

If we were having coffee, then I’d tell you I did enjoy some fun activities over the week. On Thursday, I went to have lunch at the institution townhouse with a staff. I chose a poke bowl.

Yesterday, I rode the side-by-side bike to the market in the next town. I bought olives, feta-filled green peppers (which it turned out I like despite thinking I don’t like feta), arugula and spinach and tried to buy fried chicken, but it was almost sold out. The vendor gave me what he had left over for free.

If we were having coffee, I’d share that my wife and I are pretty certain we’ll get a divorce after all. On Tuesday, she and I will be meeting up with a financial advisor to discuss the financial consequences of getting a divorce. I’ll still need to do some official ID stuff before that, but my wife is going to help me with this when she’s here tomorrow.

If we were having coffee, finally I’d share that I bought new earbuds. Yes, again. I bought JBL earbuds, because, though I have AirPods and JBL headphones, I prefer earbuds to headphones and yet the AirPods don’t work well with non-Apple products. I’m not yet entirely sure I like the new earbuds, but they weren’t horribly expensive.

When We Said Our Vows…

Posted on by Astrid

When my wife and I said our vows to get married in September of 2011, we were clear about the reason for getting married: it wasn’t about money, it wasn’t about living together, it wasn’t about kids, rather it was about us making a vow to always be soulmates.

My wife and I have been talking divorce for over a year now and, though we canceled the lawyer’s appt last summer, we’re now pretty certain that we’re going to divorce after all.

The reason, once again, has little to do with our love for one another. We still say “I love you” almost every time at the end of a phone call – and there are plenty of phone calls between the two of us. Neither of us though mean this in a romantic or sexual context. If I’m being fully honest, we should always have been best friends rather than partners, as that’s what we are and that will (hopefully) never change.

This post was written for the Six Sentence Story blog hop, for which the prompt this week is “vow”.

My Life Is Virtually Virtual

Posted on by Astrid
Daily writing prompt
In what ways do you communicate online?
View all responses

I get almost all of my social interaction from the Internet. I mean, yes, I do interact with my staff offline, but I mean interaction for fun and connections. Heck, without the Internet, I wouldn’t have met my wife. I have probably told the story of how we met a few times before, but it all boils down to one message I put on a forum back in 2007 and my now wife’s desire to expand her social circle. Had I not moaned about being bored and feeling lonely living on my own, she might never have reached out.

As for the types of online communication I use, these have evolved a lot over the years. Forums are no longer a thing. Neither is Facebook or so I’m told, but I still use it almost daily. I rarely post anything to my personal wall, but I do participate in groups and gather information off Facebook (though obviously one might wonder how much of that information is actually misinformation).

I’ve been told blogging is no longer a thing either. It’s probably partly true, in that for a blogger I’m young at 39 and eventually the generations above me will die out. I have been blogging on WordPress for 19 years next month, though I’ve only had my current blog for 7 1/2. Oh wait, I briefly had this blog back in 2011 too and till this day remember an embarrassing post about my wife from just after we got married.

So what types of online communication are actually still a thing today? I doubt I use many of them. I never used Snapchat and only watched a couple TikTok videos several years ago. I did try Instagram several times, but didn’t like it. I do watch YouTube videos, but will never create video content myself and that does make it less fun.

I do try to use Discord for expanding my social circle but experience that I’m a dinosaur compared to most of the users even on adult-oriented servers. Oh wait, someone half my age is already an adult. I remember explaining that Discord is like IRC and mentioning this in a Discord server and no-one knew what IRC was. I got a comment asking how it felt to be older than Google and responded that I’m even older than the World Wide Web.

As I get older, I find it harder to adjust to the new developments in online communication. I mean, I’m typing this post using the Block Editor and that’s a major struggle for me already. I learned WhatsApp with relative ease in 2017, but Discord is very hard for me to adapt to. However, I do want to keep up with the changing world of Internet-based interactions. If I don’t, I’ll lose the most important vessel of connection to the outside world. After all, my life might’ve become less exclusively virtual since living in a care home, but like I mentioned at the start of this post, the Internet is still where I gather most opportunities for leisurely interaction.

Share Your World (January 12, 2026)

Posted on by Astrid

Hi everyone. I’m joining Share Your World again. Loved this week’s questions. Here goes.

1. How would you describe your laughter? (giggly, deep, infectious? etc)
I think when I truly laugh out loud, my laughter is pretty deep especially for someone assigned female at birth. I don’t really like it, but I prefer it to my non-laughing voice. My voice is quite low for a woman’s, which I don’t mind, but it has some weird screechy feel to it. Eek!

2. What makes you smile?
Lots of things can make me smile, but I am told I especially have a wide smile on my face when recounting fun activities I’ve engaged in recently.

3. Have you ever cried with laughter, and if so, can you remember the circumstances?
Not that I remember.

4. Have you ever laughed at an inopportune moment?
Absolutely. I am an extremely detail-oriented thinker and this means I sometimes laugh at a detail that’s funny even though the bigger picture is rather sad. An example I’ve mentioned quite a few times is the moment a fellow patient in the psych hospital told us that he had been diagnosed with incurable cancer. He for whatever reason needed to name a staff member, but couldn’t remember her name so instead said “fat troll”, referring back to a moment he’d insulted this staff himself. I immediately burst out laughing.

Gratitude

For today’s optional gratitude section, I decided to look into BrainyQuote, an app and website with quotes on it, for a quotation on humor or laughter. I found numerous. Here’s but one of them.

"Comedy is simply a funny way of being serious." - Peter Ustinov

Indeed, this quote shows that the line between satire and reality is often blurry. I in this light remember a story on a satirical Dutch “news” site about riots because an aggressive wolf had been shot. Two weeks later, it actually happened.

#WeekendCoffeeShare (January 10, 2026)

Posted on by Astrid

Hi all on this freezing cold January Saturday! I’m joining #WeekendCoffeeShare again. It’s past 10:30PM, so no more coffee or any other beverage for me. This evening, I thankfully did have my favorite soft drink, an apple and peach-flavored, slightly carbonated soda called Dubbelfrisss, again. Yesterday the staff offered me the raspberry and cranberry-flavored one, which I don’t like, and I thought the apple and peach one was out of stock at the online grocery store we use. Thankfully not. Oh my, I’ve already started to ramble.

If we were having coffee, first I’d talk about the weather. It’s freakin’ cold! The entire week except for yesterday, it was snowy. Yesterday, we had rain. The daytime high was 4°C yesterday and that was the least cold it’s gotten. Tonight, we’re supposed to get temps as low as -9°C. Next week though is supposed to be rainy with daytime highs of 8°C.

If we were having coffee, then I’d share a few photos I took in my yard on Tuesday. I don’t care for making snowmen, though now I wish I’d taken pictures of the ones my fellow clients had been making. After all, I do like photographing.


If we were having coffee, next I’d tell you that my assigned staff finally plans to discuss a new day schedule with my support coordinator (the one who’s now my support coordinator anyway, as my assigned staff will be taking over from her eventually) next week. I’ll discuss my ideas with her tomorrow.

If we were having coffee, I’d share that, like i mentioned yesterday, I’ve been quite crafty again. This week, I made a necklace, a bracelet and several polymer clay things. I also photographed the unicorn I’d made last week. Did I mention that? I can’t remember. Anyway, I used seed beads for its eyes.

If we were having coffee, I’d also share that the idea of a possible new day schedule has me looking into cooking more again. I really hope that will be part of the schedule too. I’ve been obsessing over buying some new gadgets, such as a food processor.

Today, I planned on making flatbread again. I badly want to make it for all my fellow residents, not just the ones who stay at the home during day activities. Unfortunately, I was too tired and the living room was too overwhelming.

If we were having coffee, lastly I’d share that I’m sort of frustrated with my blog. I mean, the AI training robots seem to have left the building, but now I’m getting tons of E-mails through the contact form that look to be spam. I’m also struggling to comprehend the numbers of likes and comments on my posts. On some, I get tons of likes and a decent number of comments, but on others, hardly any. I tell myself this is a thing each January as people adjust to the new year and new ways of doing link-ups such as this one.

Don’t Get Me Started… #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “Don’t get me started”. Oh my, don’t get me started… or I’ll rant forever.

I have this habit of ranting about my care to whoever will listen. Not even about my current care, but about my care at the intensive support home. This afternoon, I was telling a staff who’s just quit smoking that, now that institution grounds are officially a non-smoking area, I no longer permit staff cigarette breaks during my activities.

I say that grounds are “officially” a non-smoking area because, in reality, no-one listens and even the higher-ups smoke on grounds.

I am a non-smoker and yet I understand the fact that clients want to smoke in the yard. Who are the higher-ups, whether they abide by the rules or not, to prohibit smoking in our own home? Well, outside of it, of course, because yes the non-smokers have a right to a smoke-free home.

Staff, however, are usually the ones who smoke the most and I don’t fully understand that. I mean, yes, it’s an addiction, but it’s also a habit. And, besides it being just plain yuck, staff are taking extra breaks in order to meet their “needs”.

Back to my not permitting staff to take cigarette breaks anymore. Every staff here understands, even the hardcore smokers, but back at the intensive support home, not so. I told this staff about a staff doing my morning activity time slot. At the start of it, she said that it’s long, right? It’s ninety minutes. “Can I have a cigarette?” I told her to stand on my balcony and discard her cig safely. Half an hour later, I was doing a clay project. “You’re now busy with the clay anyway. Can I smoke again?” I reluctantly let her use my balcony again. Half an hour later still, an hour into my activity, she was like “I’m going to need to discuss something with a coworker”. And off she was. When she came back ten minutes later, I told her I didn’t like her essentially taking three breaks during a ninety-minute support moment. “But you don’t have one-on-one,” she ranted, saying that with my “just having extra care” this means she could leave me alone whenever she needed to. And besides, she didn’t need to offer up an explanation to the client for her decisions. Well guess what? Yes, staff do need to justify their decisions to me when these affect my care.

And don’t get me started on the difference or lack thereof between one-on-one and extra care. They’re both just sums of money the institution receives for a client. Yes, some clients have more one-on-one hours or extra care hours or whatever than I do, some even having 24-hour one-on-one. However, these sums of money are based on average amounts of care a client needs. If a client has 24/7 one-on-one (which none of the clients at that home had), it means they on average need one staff with them all the time, but sometimes two and sometimes briefly none. I at the time had seven hours of extra care/one-on-one support a day and my support coordinator claimed that my day schedule at the time spanned nine hours. There are various reasons why firstly this wasn’t true and secondly it doesn’t mean I had two hours of support that wasn’t being paid for, but don’t get me started on that…

Trying to Celebrate Small Wins #JusJoJan

Posted on by Astrid

Hi everyone. I have been struggling with mixed feelings about my day schedule and the things I accomplish or don’t accomplish during the day. Sometimes, I feel like there’s been quite a lot I’ve done, but on other days, I focus on the hours I’ve spent staring at the wall.

The difference isn’t just dependent on how much I actually did in terms of crafting, cooking, walking, reading, etc. It’s sometimes also a matter of perspective. I mean, I spent most of my allowed activity time slots just chatting with staff today. I could focus on that and on the fact that, with some help, I could’ve turned them so much more productive. Then again, I could also focus on the things I did achieve. Today, for example, I crafted a polymer clay snake.

It frustrates me to no end that my day activity goal is so vague that it’ll be achieved regardless of what I do or don’t accomplish during the day. I had worded the main goal myself, saying I’d like to do at least one meaningful activity each day. To this, however, my then assigned staff added examples, including dice games, and a caveat that if it looks like I’m in distress or tired, the staff can suggest doing smalltalk or extra moments to lie in bed, saying everyone needs rest. By this logic, each day is meaningful even if I’d spent it entirely in bed.

And that’s not entirely untrue. What makes it untrue is the part where staff decide for me which activities give me meaning and when it’s appropriate for me not to engage in them. In other words, it’s worded as an excuse for staff not to help me find and engage in meaningful activities. If I chose to lie in bed all day, like I did last September when sick with probable COVID, it’s quite different from all the times staff have suggested I lie down. If I chose to be lazy, it’d be on me, but if the staff choose to be lazy and twist it to mean they’re meeting my needs, we’re having quite a different situation.

I do try to celebrate the small wins though. Like today’s snake. That doesn’t mean I can’t wish for improvement, particularly because a lot could be improved without me getting more support hours. Would it be harder on the staff? Possibly, but not necessarily. I mean, listening to me moan about my quality of life, is no doubt exhausting to some staff too. And besides, it isn’t my task to make staff’s work day meaningful.

However, it does help me personally to focus on the things I do achieve rather than the things I don’t. I’m genuinely happy about the snake I crafted. Yesterday, I even did two crafty activities and met my movement goal on my Apple Watch by walking. I try to celebrate that. Celebrating my small wins gives me joy.

This post was written in response to today’s prompt for #JusJoJan, which is “celebrate”.

Janie Mac I’m Nearly Forty…

Posted on by Astrid
Daily writing prompt
What are your thoughts on the concept of living a very long life?
View all responses

Last Monday, I had a meeting with the intellectual disability physician who prescribes my psychiatric medication. The first thing we needed to discuss, was me tapering my antipsychotic. That’s going on, thankfully. However,I also had been complaining for months about increasing tremors in my right leg and hand, decreased mobility and more pain. Unfortunately, according to her, there’s nothing that can be done about these issues to make them go away. I mean, she’s referring me to occupational therapy, but it’s not like that’s going to lessen my symptoms. More like make them more manageable, I hope.

She says my symptoms are due to the brain bleed I suffered as an infant. She however added: “You’re getting older.” Ouch! I’m turning forty this year. That’s not old, or is it?

I’ve always thought that I wouldn’t live a very long life. I mean, my paternal grandma made it to 94 and, when I was a child, my parents thought I took after her. Now, not so much. My other grandparents all lived to be in their late seventies or early eighties. My father will be 77 next week and my mother will be 71 in April. Familially speaking, I’m not at risk of dying young, even though my maternal grandmother suffered from heart disease and diabetes for decades before her death.

However, I do have the brain bleed. Cerebral palsy in itself doesn’t limit one’s life expectancy. Autism, statistically speaking, does. And it’s probably due to my mental health that I won’t make it to old age. I’ve had more close calls in the last few years than I’d like to admit.

My wife and I recently had a discussion about who would go first. She doesn’t cling to life as much as I do, but I’m far more impulsive. I hope both of us will make it to old age and in relatively good health too.

The above song has been on my mind for a few months already. My wife and I have been together eighteen years, but oh well…