Breaking Point #WotW

Hi everyone. I’m joining #WeekendCoffeeShare again, as well as participating in the Word of the Week linky. I’ve been struggling intensely over the past few weeks and am wondering how much longer it’ll take before I reach breaking point. Or whether there is such a thing as a single breaking point, honestly. I mean, I’ve been comparing the build-up to my being quite likely burned out to the horrific experiment (I tell the animal-loving part of myself it’s just a thought experiment, but I doubt it is) of the lobster in hot water. You know, the idea that if you throw a lobster into boiling water, it’ll jump right out, but if you gradually boil it, it won’t notice until it’s too late and then it’ll die. Realizing this actually happens makes my inner vegan sick! But I digress…

First, I’d like to talk about the weather. It’s been mild with daytime temps between 14°C and 18°C, but the nights have been a lot colder. We had a little rain early in the week, but none over the past few days and there’s none in the forecast for the upcoming week either.

Then, let me share how things have been going. I’m increasingly overloaded and have had quite a few incidents of crying uncontrolably over the past week. I’ve also been engaging in some compulsive self-imjurious behaviors, particularly at night. I’ve almost literally needed the night shift each night over the past few weeks. Each evening, I’m telling myself I won’t need them tonight and feeling guilty when I do. Most night staff are still understanding and kind, but it’s only a matter of time before they, like the regular staff, will grow weary.

Unfortunately, my support coordinator and assigned staff aren’t on the same page. The rest of the team are all over the place. Most are struggling intensely with feelings of powerlessness. Some admit that they wish they knew how to help me, while others act out their feelings by screaming in my face that if I go on like this, no-one will be there for me anymore. The first group, I feel some level of compassion for even if I don’t know how to show it. The second, I only feel scared of. I’m currently actually terrified for the times the staff who screams about there being nobody for me anymore the loudest will be supporting me. This is the same staff who shoved the “one chance” rule down my throat a few months back, but she’s also the same staff with whom I used to do quite many fun activities. She’s not a bad person or a lazy staffer, but she’s most definitely overworked.

I see it’s a vicious cycle: I’m distressed, exhibit more challenging behavior, which frustrates the staff, who then act out in more repressive ways, causing me even more distress… and unfortunately it’s the staff who show the least harmful repression to me who see the most of my obvious distress. I’m extremely scared of where this will end. My worst fear is the harsh staff being seen as more effective and their actions therefore being reinforced. I’ve heard of more than one current client at this institution being “bullied” (staff’s words) into compliance and I know even the Center for Consultation and Expertise is all for ABA (applied behavior analysis), including in many cases aversives.

I do try to see some glimmers each day. I however sometimes feel guilty when I can’t appreciate them or end up spiraling over some apparently tiny detail when I did enjoy some meaningful activities that day. I constantly hear the staff’s (same staff who screams that soon there’ll be nobody) words that I have nothing to complain about because I get familiar staff and enough one-on-one ringing in my ears. I try to remember my support is better already than it was at the intensive support home, but that only contributes to more guilt over my inability to be upbeat.

Recently, after a few incidents in which I’ve become physically aggressive, I’ve been thinking I should be forcibly medicated or even euthanized. My inner animal lover sometimes contributes to this. If aggressive dogs are put down, shouldn’t I? My wife, who is a vegan, countered that just because aggressive dogs are currently put down, doesn’t mean that’s the way it should be.

Unmasking…

Hi everyone. I’ve been struggling intensely for a while now. The aggressive meltdown that caused me to land with my head on the floor (as I mentioned in the comments on that post, I wasn’t actually thrown) was only the proverbial straw that broke the camel’s back. I’ve been having chronic headaches and nausea that the doctor says aren’t due to the fall. Last Wednesday, I had a fever just when the doctor took my temp, so she concluded I must have the flu or something. I doubt it, as I didn’t have a fever any other time my temp was taken and I’m not having any other flu symptoms. I’m more sensitive to stimuli, mostly sounds and scents, than I used to be. Unfortunately, my ability to argue hasn’t gone, so the staff believe I’m “oppressing” them when I refuse them access to my room when wearing strong perfumes. This morning, my support coordinator told me to stop pacing my room, saying it’s compulsive and that compulsive behavior only worsens over time. She may be right about that, but it’s not like I’m doing anyone any harm by pacing and it’s not like the staff deal with the reason for my being more compulsive. I’m pretty sure I’m in significant burnout and the obvious solution to my staff seems to be to repress my behaviors that indicate I’m in distress.

I’m trying to read up and listen to podcasts on autistic self-discovery and unmasking. Not that I have the attention span to read for longer than about fifteen minutes at a time. Or that I think any of the recommendations I find, are useful to me, simply because I have an institution and rather behaviorist staff to deal with. I’m also unsure where to draw the line between valid unmasking and infringing upon other people’s rights. For example, apparently I’m not allowed to ask staff to wear less perfume because that’s “oppressive” and I don’t know where it’ll end when I keep “choosing” to be by myself rather than accepting staff who are essentially presenting in a willfully overloading manner.

Institutional Abuse: Abuse in the Care System #AtoZChallenge

Hi everyone and welcome to my letter I post in the #AtoZChallenge. Today I want to talk about trauma that I for one didn’t experience in childhood: trauma and particularly abuse experienced in the care system. I’m struggling majorly with this, as just this evening I had an aggressive meltdown that led to me being thrown to the ground by one staff and another staff admitting that the only reason I’m not being locked up or physically restrained is the fact that I’m not strong enough.

I want to say here that my choice of words is a bit tricky. Is it “abuse” if the client was themself aggressive, even if it was “just” verbally? I am struggling intensely with the fact that, on the one hand, my wife never locked me into a room or threw me to the ground even though I was quite a nasty person to her at times when we were living together, but on the other, there are just two staff to ten clients here. I try to understand that staff are people too and not necessarily worse people than others are. My wife sometimes said that the staff at the intensive support home were ill-intentioned at best, but I doubt it. My point is, people are part of a system. When that system is purposefully created to oppress some people, yes, the “low-key” oppressors are to blame too, but that doesn’t make them personally bad people. Many unfortunately don’t realize how much they’re accustomed to using (and abusing) their power. In fact, where it comes to care staff, most don’t even have a clue that they’re higher up in the pecking order than us clients are.

That doesn’t mean that the (ab)use of power doesn’t affect us. I mean, I was once, at the intensive support home, told that if I were dragged to my room, I had probably asked for it with my behavior. The thing is, even if I had, that doesn’t make being physically dragged not traumatic. Similarly, I can totally understand why the staff this evening threw me to the ground (I’m not even 100% sure he intended on me landing on my head), but that doesn’t mean my head doesn’t hurt.

One last thing I want to discuss, is the fact that institutional abuse may technically be a staff’s action (or inaction), but it is the result of a long line of decisions made by management, the Care Office or other funding agency and ultimately the government. It is not the client “choosing” to be restrained/locked up/drugged/etc. with their behavior and, like I said, the staff are the ones doing it, but if the government chooses a lock or shot is cheaper than support, they are the ones ultimately responsible.

Hypervigilance in Trauma Survivors #AtoZChallenge

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Today, I want to talk about a major symptom of (complex) PTSD which I struggle with a lot: hypervigilance.

Hypervigilance is an increased awareness of one’s environment and seemingly unimportant details in it. That is, often people who experience hypervigilance constantly scan their surroundings for signs of threat, but that doesn’t mean they’re hyper aware of everything going on. In fact, they often miss out on actually important aspects of their surroundings, such as missing part of a conversation they’re having.

There is a sensory aspect to hypervigilance, ie. increased sensitivity to noise, smells or other sensory stimuli. However, there are also cognitive and emotional aspects to it. People who are hypervigilant due to (complex) PTSD often overanalyze the things happening around them and too easily perceive them as threatening.

I for one commonly overanalyze things that I perceive. It doesn’t help that people often expect me to appraise already overloading stimuli differently based on other factors involved. Like, due to being autistic, I get very easily overwhelmed by loud noises, crowded environments, etc. However, due to both autism and C-PTSD, I also overanalyze my perceptions. For example, I often judge myself for being overwhelmed because, for instance, my fellow residents “can’t help” making certain noises.

People with complex PTSD often experience hypervigilance about other people’s intentions too. I for one am always looking for signs that the people who mean the most to me are going to betray me. It’s not like I want to, but that’s been my experience most of my life.

Hypervigilance can also show up in physical symptoms. An increased startle reflex is part of the diagnostic criteria for PTSD. Many people with (C-)PTSD also struggle to relax even when there are no sudden stimuli or changes to the environment. Which, now that I type it, I realize is nonsense: the environment is always changing even when people who aren’t neurodivergent or trauma survivors or both, do not notice. I last week had a meltdown because I was overwhelmed by the sounds in the living room, only to be told by the staff that it was totally silent. Well, except for a fellow resident’s tablet, the TV, the dishwasher and I’m not even counting the relatively “minor” everyday sounds, like birds chirping outside, the staff station clock ticking, etc.

Anyway, hypervigilance like I said can show up as physical symptoms. Many people experience an increased heartrate, heavy breathing, higher blood pressure, etc. After all, stress (and hypervigilance is majorly stressful) activates the body’s nervous system.

I don’t yet know what can be done about hypervigilance. I follow movement therapy, but so far, it’s incredibly slow-going. It doesn’t help that, like I said above, the world is ever-changing. In other words, even though my therapist talks about baby steps, I know the real world doesn’t work like that.

Sunny Sunday (April 5, 2026): Green Tea “Without the Hassle”

Hi everyone. Today I’m joining Leigha for Sunny Sunday. Today is Easter Sunday. For me, as someone who isn’t a Christian and didn’t grow up with religion, it doesn’t mean much beyond being an excuse to stuff myself full of junk food and candy. I’m grateful that I don’t have a reason to miss my family more than I usually do during these holidays. I mean, I don’t miss the family I have, I think. I miss the family I could’ve had.

Let me, however, share some positives for the day. I made a blueberry, mango and cucumber smoothie for myself and my fellow residents this morning, which we enjoyed as part of our Easter brunch. My fellow residents truly appreciated it. In the evening, we got Chinese food delivered. I ate a lot, but not so much that I got a stomachache.

Generally speaking, I’ve had a pretty good week. Yes, I still experience ups and downs, but overall, I do more meaningful activities than I used to do. For example, yesterday I cooked macaroni (just for myself this time). I had planned on cooking my traditional mushroom macaroni, but couldn’t find the concentrated mushroom soup I needed for its sauce. I used powdered mushroom sauce instead, which was still pretty good.

I’m also finding a way to have my daily cup of tea in the evening despite the change in support hours at my care home. It’s heavily dependent on the particular staff whether it works out or not, but I do hope that as staff learn to understand me more, this’ll improve. Today, I did get to enjoy a cup of green tea. And by green tea I mean green tea “without the hassle”, as I call it, so pure green tea without additional flavorings. I do like a select few flavored green teas, but none that my home usually has on hand and somehow all the green tea they order comes in variety packs with lots of unnecessary flavors. I’m grateful that, today as well as yesterday, the staff were able to find a bag of pure green tea for me.

March 2026 In Review

Hi everyone. It’s the last day of the month and that means I’m joining Natalie for her monthly wrap-up. March was a tough month. As I say this, I hear a little voice in my head saying I’ll never be happy anyway as I’m so negative. One of my staff on Sunday said I have nothing to complain about because I get regular support workers and my day schedule is followed. I still wonder how much of my dissatisfaction is indeed due to circumstances that can be changed, such as my day schedule, how much is due to the inherent nature of my being multiply-disabled and living in long-term care and how much is my attitude.

In any case, early in the month I heard that my activity-based day schedule would be taking effect on April 1. That’s tomorrow. Unfortunately, on the same day, the staff’s hours are going to change and this, even though the literal hours they are in the home won’t be cut, means my support will be cut a little. We’ll see how that goes.

I tried to adapt to the new support hours already and this was incredibly hard. I also tried to myself follow a schedule with more meaningful activities. This was partly successful, especially with staff who are already able to help me get more meaningful activities done. For example, last week, one of the staff helped me create a unicorn-themed card for a former fellow resident from the intensive support home, who had her birthday that day.

Thankfully, one staff, with whom until then I’d only been doing dice games and going for walks, herself took the initiative to ask a colleague to orient her to the polymer clay activity.

I have been cooking and baking more than I used to. For example, I baked so-called “healthy” brownies that I fully intended on handing out at the monthly local brain injury meet-up. They weren’t all that good though.

Later, I found out I had a Trojan on my computer that came with the recipe manager app I used to download random recipes off Facebook into, including this “healthy” brownie recipe.

Before I found out I had malware on my computer, I had been obsessing over the idea of cooking vegetarian curries. Most of the recipes, I got off English-language food websites like BBC Good Food, so I’m not sure I’ll be able to use them. After all, though my English is quite good, my staff’s might not be.

Last Saturday, I cooked a delicious cauliflower, tomato and chickpea curry. This recipe was in Dutch, by the way.

Now that I look over this post, I wonder what made the month so tough, given that I once again did more meaningful activities than I used to. I do believe part of the problem is the fact that I’m still not adequately supported when I’m struggling. I mean, highs and lows are to be expected even when you’re having the proverbial time of your life. When people expect me to have a positive outlook because “I have nothing to complain about”, that is horribly invalidating. Life in the care system isn’t great and it isn’t meant to be. I don’t expect to ever rate my days higher than a seven out of ten, but when staff do have this expectation of me, it’s incredibly frustrating. I’m hoping something can be done about this.

Of course, this was also the month I finally realized I’ll never have an okay relationship with my parents. It’s tough realizing I never experienced a proper bond with my parents and even tougher to know that no-one can replace it. However, I do think I’m more capable than I used to believe. I’m not sure how I feel about that.

Meaningful Activities #WotW

Hi all! No Weekend Coffee Share (at least, Natalie isn’t hosting) this week again. I love Anne’s Word of the Week linky for summarizing my week too. Maybe when Natalie hosts her coffee share again, I’ll do a combination of the two. That is, if I can figure out a word or phrase to sum up my week. This week’s phrase is “meaningful activities”.

This week was truly a good one overall. I’ll start with my spontaneous baking activity on Saturday. My staff and I had gone on a walk, but we didn’t want to stare at the wall for the rest of my long activity time slot, so she proposed we do a baking activity. I proposed to make caramel blondies, for which I’d bought the ingredients a few weeks ago already to use with another staff, who however wouldn’t say when we could make them. The blondies were extremely filling but good. Next time, I’m going to cut down on sugar a bit and add some white chocolate on top. I served the blondies to my fellow residents in the evening. One of them asked for days after that, when she learned that I had some left over, for more “Astrid cookies”.


On Monday, my staff and I went to the institution townhouse for coffee. We didn’t have our wallets with us, so we couldn’t buy any of the treats they offered (the coffee is free). However, one of the people behind the counter offered us a brownie that wasn’t good enough to be sold to share. My staff had only a small piece and I had most of it. It was delicious! I had planned to eat the last of the blondies that day, but had two and besides, I was completely stuffed already. I decided to offer them to the two fellow residents who aren’t at the day center during the day either.

On Tuesday, the same staff was supporting me in the afternoon again and, of course, we reasoned we had to go back to the townhouse with our wallets to buy something this time. We didn’t fancy another brownie, but we did have a look at some of the handmade items on sale. My staff bought some tea and I bought a bag of rocky road chocolates. No photo in the townhouse, but I did take an interesting photo of the bag on my nightstand.

Then on Wednesday, like I shared that day already, I crafted a polymer clay dice for a staff who was leaving. Today, I also have been claying, because one of the staff who’s been here forever but with whom I’ve never done a clay project, wanted to learn. It felt good being able to do this activity even though it was in the morning and I was a little cranky.

On Thursday, the staff and I rode the side-by-side bike to Twello to buy some things. I bought raisins, pumpkin seeds, sunflower seeds and corn waffles. We also needed a new mixing bowl, since I’d found out earlier that the one we used to have had a large tear in it. The staff offered to pay for it with the home’s debit card, which sounded reasonable, since it was the home’s bowl that tore. Not that I have a mixing bowl, but well.

Yesterday saw another trip to Twello to go to the market. When we were at the townhouse on Tuesday, one of the institution managers was telling us that he’s going to campaign for the upcoming local election at the market on Friday. I didn’t see him at the market, but I did get to talk to two other parties’ campaigners, both of who gave me some seeds to plant. I’m having to think on where to plant them, as my little yard has no flowerbeds.

Overall, this week was truly filled with meaningful activities. Since my new day schedule will (hopefully) take effect on April 1 and I’ll then be having two weekly cooking or baking activities, I’ve been looking at things to make then too. My wife inspired me to look into vegetarian dinners. Not that I’m a vegetarian or ever plan to be, given that meal delivery service meals suck even more without the meat than they do when it’s included. However, when I prepare the meals myself, I’d love to look at ways of adding flavor without meat or poultry. The idea is that usually I won’t have to cook for the entire home, so I can experiment without considering my fellow residents’ preferences.

A Good Mood

Hi all on this rainy Wednesday. I just found Esther’s writing prompt for this week, which is “mood”. Since I’m in a pretty good mood right now, it feels appropriate to write about it.

Yesterday, I had a meeting with my support coordinator and the behavior specialist who’s filling in while my home’s regular one is on maternity leave. As regular readers of my blog might know, we’re in the process of designing a new, activity-based day schedule for me. Initially, the draft didn’t appeal to me, because for one thing I’d wanted it to include time for me to have a cup of tea in the living room later in the evening. As those who’ve followed me for a long while will know, I introduced this cup of tea last summer and it helped me through a dark period. Of course, I’ve mentioned more than once that if a cup of tea is the only thing to lift my mood during a day or even week, that’s not really all that good. I mean, yes, it signifies that I’m not majorly depressed, but it isn’t particularly a sign of good quality of life.

My support coordinator yesterday told the behavior specialist about my daily positives and negatives, which I’ve been sending out to her and my assigned staff on a weekly basis. She mentioned that my positives usually include activities that have meaning for me, such as crafting, cooking, baking or the like. My negatives usually involve situations in which the staff don’t adequately support me based on my needs of that moment, such as when they place too much responsibility on me.

Yesterday, I for the first time in a while had a day in which I didn’t see any negatives. When I wrote in the Gratitude app in the evening, I even rated my mood as “good”. Not “great”, but I don’t expect to feel great. I usually rate my daily moods as “okay” at best.

I listed several positives yesterday too. One was my having made another batch of homemade granola. This takes only about half an hour total, but it significantly lifts my mood to make it.

Similarly, on Monday, we had twenty minutes left of my long activity time slot in the afternoon after having gone on a walk and having had coffee at the institution townhouse. My staff initially proposed we play a dice game, but I suggested we try making a simple bracelet. My staff questioned whether we’d have enough time to finish this, but I challenged her by saying we could at least try. Usually, I’m the one suffering from inertia because I fear we cannot finish an activity within my allocated time slot. That’s one reason I proposed doing a more activity-based day schedule, of course including approximate times for the activities. Anyway, guess what? We finished the bracelet on time!

Today, if nothing major happens to diminish my mood, I’ll also have a day with no negatives. This morning, I started off by feeling a bit stuck by fear of there not being time for an activity. Thankfully, I pulled myself through it and guess what? I made not just the one thing out of polymer clay I’d wanted to make, a rolling dice for a staff who’s leaving and with whom I used to play dice all the time. I also started on a project for a staff who’s just become a father. Of course, since the dice had to be painted, I didn’t finish it right then, but I did in the afternoon, just on time for the staff’s goodbye.

My support coordinator is definitely right that meaningful activities are what help me get in a good mood. Isn’t that normal though?

#WeekendCoffeeShare (March 6, 2026)

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM as I start typing this, so I’ve had my last cup of coffee for the day and will take a break from writing this post at around 8PM to have my evening fizzy drink. Actually, Dubbelfrisss, which I generally have, isn’t very fizzy, being that it is only slightly carbonated. That’s a good thing, since I can’t stand actual fizzy drinks. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been incredibly warm all week with daytime highs above 15°C each day. Today we even had a daytime high of 18°C. It’s been sunny for most of the week too. I know, climate change and all and we’re probably getting summertime temps above 30°C, but for now I love this weather.

If we were having coffee, I’d also proudly announce that I broke my exercise record on my Apple Watch again. Yesterday, I got in 190 exercise minutes, both by walking and by biking to Deventer.

If we were having coffee, I’d tell you that I rode the side-by-side bike to Deventer twice this week, both times looking for new clothes. On Tuesday, I bought a few jeans and a blouse. Yesterday, I initially wanted to buy a blouse and a shirt, but didn’t end up buying those when I found out they were rather light-colored. So is one of the jeans I bought on Tuesday, so now I’m afraid I’ve stained it beyond cleaning already. This once happened with a pair of off white pants I bought with a staff several years ago and my wife said wise staff won’t let me wear light-colored clothes because of the risk of me spilling coffee over them. I told the staff I went clothes shopping this yesterday and she said I could put a napkin on my lap to prevent this. The thing is, I only need to forget this once for clothes to be ruined by coffee stains. I’m now unsure as to whether I was wise even having gone clothes shopping with her.

If we were having coffee, I’d tell you I’ve been playing around with AI a bit. Last Saturday, when I shared the Warmies unicorn soft toy on here, I tried to take several more pictures, but none were better than the one I’d posted. Then I decided to ask CoPilot to edit the image to make the unicorn stand out more. I don’t know whether the original picture was recognizable as a unicorn, but I loved how CoPilot recreated it.

For reference, here’s the original photo I took.

If we were having coffee, lastly I’d share that I finally saw my new, activity-based day schedule, to be taking effect on April 1. To be honest, it’s a bit disappointing, in that my assigned staff just added the activities I’d proposed to it and that’s it. How this could take months of “thinking” to take effect, I don’t know. On top of that, the new schedule will take effect on the same day the home will start having a new staffing schedule too. My support coordinator told me there’s no shortening of hours, but at an important time for me, there is. You see, when I proposed my activity-based day schedule, I’d added my daily cup of tea at around 9PM into it, both to make the schedule more aligned with reality and because that cup of tea truly helps me make it through the night without support. Unfortunately, it’s not in my new day schedule and staffing will be cut at 9PM too. I for clarity’s sake don’t need one-on-one attention then, but it does help when staff keep an eye on me. My support coordinator, who told me about the staffing changes and new day schedule, said I can’t expect everyone else to be in bed by 8:30PM because I want my cup of tea and there’s not enough staff to keep in touch with me and help the others to bed at the same time. No, I can’t, but it’s not me who cut those hours. Several staff have told me I’ll have to wait and see how things go and no-one is prohibiting me from having a cup of tea, but then why can’t it be in my day schedule?

Thankful Thursday (February 19, 2026): I Still Have Hope…

Hi everyone. Today is Thursday, so I thought I’d try to create a post focusing on thankfulness. It’s been a rough week with me having a zillion ideas of things to do but no way to put them into action. I’m still struggling with the lack of structure in my day schedule, which means I have no way of planning any activities.

That being said, I keep having hope. Sometimes I feel that hope is my enemy, in the sense that it’s the only thing keeping me alive and what if it’s idle hope? What if the powers-that-be are unwilling to help me create a more meaningful life and they’re just keeping me in the dark about it because they know things might take a turn for the worse if they tell me?

Let’s focus on gratitude though. Today, I cut up the bell peppers me and my fellow residents had as a side with our lunch. I also went shopping for groceries with a staff. I bought some ingredients for making smoothies and breakfasts, as well as a poke bowl I had for dinner today. That was good.

This staff used to work here until last summer and was one of my favorites. She occasionally still subs here. I feel a little guilty having been so vulnerable with her today as to show her that, in all honesty, I don’t feel my life is meaningful at this point. Thankfully, she did have her regular coworkers write down how much I’m struggling.

I also wrote an E-mail to my assigned staff and support coordinator this evening. My assigned staff is on sick leave again, but she said she’d check her E-mail regularly. I explained the thing I’m struggling with most again, ie. the fact that I experience a lack of meaningful day activities despite sufficient one-on-one hours. The most frustrating part is the fact that it’s not about budget or staffing, so that I honestly don’t see why I wouldn’t have gotten a more structured day schedule months ago.

My support coordinator said a few days ago that she’d get back to me about the issue on Sunday. I doubt anything significant is going to become of it, but the sliver of hope that things might improve, is keeping me going.

For now, what is also keeping me going, is actually thinking up ideas of things to do when the staff are more willing and able to help me create more meaningful activities. Here, I said “when”, not “if”. Does that mean something?