#WeekendCoffeeShare (August 14, 2026)

Posted on by Astrid

Hi everyone on this blazing hot Friday. I’m joining #WeekendCoffeeShare again. It’s 7:30PM as I start typing this post, so I’ve had my last cup of coffee for the day and will likely be off for a bit before publishing this post to have my evening soft drink and chips. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Oh, I already disclosed that it’s blazing hot again. We’re on our fifth local heatwave this summer if I’m correct. Today, the daytime high was 36°C. Tomorrow we’re going to have a daytime high of “only” 27°C but it’s going to get humid. I always said summer is my favorite season, but now I’m pretty sure it’s not.

If we were having coffee, I’d tell you that I’m still meeting my movement goal on my Apple Watch each day this month so far despite the heat. One reason though is the fact that, yesterday, I rode the side-by-side bike to the next town despite it being at least 30°C. That, honestly, was a stupid decision.

If we were having coffee, then I’d share that I did quite a lot of culinary activities this past week. I finally made iced tea on Monday after having bought loose-leaf green tea on Sunday. I also made a smoothie yesterday and made a tuna salad on Wednesday. No picture, because when it was on my plate, I’d just had an argument with my best friend over my choice to eat dead animals again and this caused me to feel so bad that I didn’t feel like taking a picture. The reason she was upset, by the way, wasn’t necessarily the fact that I eat meat (though that’s a valid reason for her, being a vegan, too), but the fact that I’d told her a few months ago that I would be trying to go vegan when creating my own meals and she felt that I’d lied about my intentions. I hadn’t, but my method of “trying” felt insincere to her. Thankfully, we resolved the argument eventually.

Today, I did create a vegan dessert. I used mango, silken tofu and agave syrup. The staff who helped me make it, didn’t like the strong soy tang,, but I surprisingly didn’t mind. I didn’t particularly like the texture though, which is one more reason I really need to get a food processor.

Mango mousse

If we were having coffee, I’d share that there isn’t any news on the moving front and my Care and Force Act plans probably won’t be fully ready for a couple of weeks at least. After all, both my assigned staff and support coordinator are off until late August and the behavior specialist will be off right after them.

Speaking of which, somehow the orienting of a new staff got messed up yet again this week. My support coordinator had initially said that this staff would be oriented to the activities and ADLs and then we’d evaluate to see if she needed more orienting. A few weeks ago, she told me that the orienting to the activities would be postponed but there wouldn’t be an evaluation after her orientation to my ADLs. This reeks of the one chance policy and I’m horribly upset about it. On top of that, at the last moment the person doing the orienting got switched. Yes, again! I wouldn’t even have found out if I hadn’t inquired about it myself this afternoon. It went kind of okay, but this whole thing still frustrates me to no end.

Now the new staff is an experienced worker, but I have had similar problems with student staff. In late August, a new student staff will start working here and, though my support coordinator thinks she shouldn’t be oriented to me at first, some staff disagree. Besides, if she doesn’t get oriented to me during her introductory time here and the powers-that-be decide later on that she needs to work with me anyway, will we have the same issue we had with the last student as well as with the currently orienting staff, ie. that she isn’t working as an extra anymore? I have absolutely no trust in this entire process.

I’ll sign off now, because I sense that if I continue this will end up being a negative rant again. I’m going to have a cup of green tea now.

Spoiler Alert: Disabled People Are People!: Reflections on Involuntary Care

Posted on by Astrid

Hi all. As those who read my most recent post know, I had my Care and Force Act meeting yesterday. For those not familiar with this, this is the law governing when people with intellectual disability, dementia or brain injury can be subjected to “involuntary care”, such as restraint, seclusion and forced medication but also when restrictions can be placed on how a person lives their life. For example, it regulates the circumstances under which people can be prohibited from using electronics.

My own Care and Force Act plan only relates to measures like restraint, seclusion and forced medication. These three have more strict guidelines than other measures like prohibiting someone from using electronics. With these, it’s always “involuntary care” regardless of whether the person shows resistance or not. This is actually a reason I recently found out that my antidepressant prescription is “involuntary care”, because it does not follow medical protocols on when it should and should not be prescribed. This does not mean I will go off of it, by the way.

The meeting with the client confidante and my home’s behavior specialist went pretty well. I attended it without a staff, because at the last moment the staff who could attend it with me was switched and I didn’t like the one they assigned me.

The confidante however was quite critical, which I liked but the behavior specialist didn’t. There are three plans involving restrictive measures, all within the stricter category: two for restraint and one for seclusion. The one on my antidepressant hasn’t been written yet. I had E-mailed the behavior specialist in advance with a lot of feedback on the plans. Particularly, they were far too generic. For example, it is written in them that I can be restrained when in “high distress” and that this will prevent me becoming physically aggressive towards staff. The first part of this statement is horribly nonspecific and the second is frankly wrong: I actually rarely if ever become physical when not being restrained and the order is reversed, in that I am restrained first for verbal irritability and this leads to furhter aggression from me.

The behavior specialist got quite uncomfortable with the critical comments from the confidante. After all, she pretty much told it like it is: if I were to file a complaint, there’d likely be several grounds for it being upheld. She also quite clearly said that restraining or secluding someone without a proper plan is deprivation of liberty. I liked this validation, because it shows that well, just because I’m a client doesn’t mean the staff can do as they please. Actually, when the behavior specialist claimed this side of the home being locked isn’t for me (which I frankly believe isn’t true), the confidante quite bluntly suggested I get a key. This is unrealistic in my opinion, but it does show that staff can’t randomly be locking people in just for the sake of it.

Today, I had a horrible argument with the staff who’d been initially assigned to attend the meeting with me. It wasn’t even about me: another resident had eloped and she was threatening to refuse him access to his electronics after he was taken back here. I didn’t actually want to go into this client’s situation, as it’s honestly none of my business. All I wanted to do is raise awareness of the fact that just because someone is intellectually disabled doesn’t mean they don’t get to live their life as they want. This particular staff has a rather ableist attitude towards care, literally having told me that she gets to decide most things about me because she’s the staff. The reason for this comment was my telling her that we were going to take a shorter walk than she wanted. This is another example of the not-so-strict measures, because deciding that I have to take a certain walk is restricting me from living the way I want to live. Not that this particular situation would’ve been one I’d make a fuss of if not for the fact that I was literally in pain and had already been going on two longer walks that day.

Unfortunately, the Care and Force Act is a bit vague in terms of what does and does not count as involuntary care. For example, a home’s front door being locked at night doesn’t necessarily count, because it is not disproportionate and affects every client equally. That being said, there is some push towards open doors and I can see why. After all, like I said when a staff used as a reason for the front door being locked at all times that regular front doors are locked too, regular house residents have a key.

After digesting the meeting, I E-mailed the behavior specialist that I understand that it takes quite a drastic attitude change to actually fully validate this home’s client’s rights and that I don’t expect this to happen overnight (or before I move out of here). I however do want to make sure that we’re making progress and at the very least it doesn’t get worse.

July 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means it’s time for my monthly recap. July was most of all a hot month weather-wise. It had its highs and lows, but wasn’t as eventful as May or June had been. I consider that an okay thing.

The first half of the month was an uncertain time. I learned in mid-June that I was going to be moving out of this care home, but wasn’t sure of the details. I mean, for all I knew, I could be kicked out to a crisis unit or onto the streets.

It didn’t help that my aggressive behavior got a bit worse in early July. I had another major incident on July 10, in which among other things I told a staff she’d be facing a complaint. I never followed through, because she backed down with her restraint quite quickly. Later, I was told that the way the situation escalated would’ve in fact warranted me being restrained. I’m not entirely sure how much my support coordinator, who told me this, knew about the order of events, because well cause and effect were reversed: I spiraled out of control after the staff tried to restrain me, not the other way around. This particular staff has quite a harsh support approach, so I maintain that it need not have escalated into a restraint-worthy situation.

I will finally have a meeting to discuss my Care and Force Act plan on August 10. My support coordinator will be off work then, but the behavior specialist will attend, as will an independent client confidante. I will hopefully be able to make it crystal clear then that restraint is not a way to de-escalate a situation for me nor is it something that’ll teach me a lesson. Rather, its purpose is solely to keep me from causing significant harm to myself or others.

On July 16, I finally met with the behavior specialist, team leader and my support coordinator and assigned staff to discuss my moving out of this care home. It turned out that there are no plans of single-handedly terminating my care. As I read my housing profile, which will be sent on to the care finding people, I did realize that for some staff, the situation is however rather urgent. It isn’t like this surprises me, but it does kind of contradict the rather fluffy letter I received from the behavior specialist on July 16.

Today, I received a phone call from independent client support. The agency the substitute behavior specialist had recommended, didn’t feel like they could help me, but the one with the client confidante on involuntary care did. I was happy to find out that the same client supporter I’d spoken with several years ago regarding my move from the intensive support home to my current care home, was able to pick up my case.

In other news, today my now ex-wife and I received the letter that our divorce has been finalized. This means we’ll probably soon be talking selling the house. Otherwise, it doesn’t change much.

Over the month of July, I did engage in a few crafty and culinary activities. On Wednesday, I cooked the absolute blandest pasta pesto ever. I cooked it for my fellow residents too, but was so underwhelmed with the result myself that I didn’t even care to ask whether the others liked it. This did motivate me to learn more about the details of cooking beyond blindly following recipes.

#WeekendCoffeeShare (July 17, 2026)

Posted on by Astrid

Hi all! I’m joining #WeekendCoffeeShare once again. It’s now 7:30PM, so I’ve had my last cup of coffee for the day. I need to take a shower in about half an hour, so will let my post sit for a bit then and return after I’ve had my medication and evening soft drink. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. We were supposed to get another heatwave here this week. Thankfully, it wasn’t that bad, but only barely so. It’s incredibly dry though. Here’s hoping for rainy weather soon.

If we were having coffee, next I’d tell you I won’t be having a perfect month with respect to my movement goal on my Apple Watch. It’s not necessarily because of the weather. Rather, last week Wednesday, I stubbed my toe and it led to a small fracture. The staff who was here when it happened (in fact, I stubbed my toe on his shoe) initially thought it was just bruised. Unfortunately, I took this to mean I shouldn’t be nagging even though the next day and the next and over the weekend, my toe hurt like crazy. I ignored the pain and kept walking. Then on Sunday, the pain was so bad that I could barely walk outside at all, so the staff who was with me at the time, said we should ring the GP on Monday. The GP’s nurse practitioner came by on Tuesday and said I probably suffered a small fracture indeed. Since it’s my little toe, nothing can be done, but she did give me naproxen for pain relief. It’ll likely take several weeks for my toe to fully heal, but next week, hopefully I’ll be able to get by with just paracetamol.

If we were having coffee, then I’d share that I had a meeting with the behavior specialist, team leader, my assigned staff and support coordinator yesterday about the moving plans. It turns out they have no plans of actually kicking me out against my will. They just believe, like the substitute behavior specialist said about a month ago, that a place for people with brain injury may be more suitable for me. Whether finding me a suitable place is possible given my current care profile and the extra support hours etc., will have to be determined. It’s all quite scary, but I’m not as scared as I was before I had this meeting.

If we were having coffee, I’d tell you I also had a meeting with the intellectual disability physician on Monday. I went down another 1mg of my antipsychotic. I’m now on 6mg of aripiprazole. I can’t believe I was at one point, for many years in fact, taking 30mg.

We also discussed my getting access to my medical records. Thankfully, she gave me permission. The GP will have to sign me into the system though.

If we were having coffee, I’d share that I didn’t cook last Saturday or Wednesday, but I did make another batch of granola on Wednesday. The reason I didn’t cook is the fact that I reasoned it’d be too hard for me given the stress of the two meetings I had. All this being said, I did help with preparing my own lunch by cutting up the vegetables I usually have as a side a few times. This was a good experience.

If we were having coffee, I’d share I did engage in a few creative activities over the past week. One involved making polymer clay earrings. The finished project didn’t satisfy me, but the process was fun.

I also created another unicorn-themed chalk pastel drawing. Can’t remember whether I shared this before, but one of the staff is incredibly creative and she at one point came up with this idea. I used a template for drawing the unicorn and of course I know my six-year-old niece can probably do it better than I can, but who cares? I’m more and more appreciating the fact that I can do something rather than focusing on what I can’t compared to non-disabled people.

This brings me to another creative adventure: photography. I’m hoping to soon take more pictures and to actually share them on the blog. I in fact subscribed to a few blogs that have photo prompts and am liking them a lot. I really would like to expand my creative horizons.

First Steps in Finding a (Truly This Time, I hope) Suitable Care Home

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a post on this blog. This week has indeed been full. Not necessarily in that anything spectacular happened, but I’ve been hyperfocusing on the home-finding thing.

This is one reason I finally changed my tagline. I’d been annoyed at my old one for years, but could never think of a more appropriate one. Looking back, it should’ve been easy.

So here I am chronicling my complicated care-finding process. I have been looking up various options online and talking to people on Facebook. Specialist client support hasn’t contacted me yet even though they said they would do so this week. Here’s hoping they’ll contact me on Monday or Tuesday.

I haven’t spoken to the team leader or behavior specialist either. My trust is at a very low point and I’m half expecting this to go exactly like it went with my last several moves: not hearing anything for months until the powers-that-be have found a place they think they can send me to. Staff are saying I’ll have a meeting with the behavior specialist and team leader “shortly”, but they for whatever reason aren’t allowed to tell me when. One staff eventually said it’s on the 16th, but my trust is so low after all the comments that I’m not allowed to know etc., that I’m thinking he may’ve made it up to shut me up.

In the meantime, I am looking at possible new places to transfer to. I don’t want to end up in general psychiatric care again and doubt general homes for people with physical disability, vision impairment or brain injury can cope with my behavior. There are places for people with a combination of impairments, but these aren’t widespread. Like I said last week, staying in this area is no longer a top priority for me, but it’s definitely still on my list of things I hope for.

One thing that scares me, is the fact that I have a long history of being too complicated for one place yet not qualifying for another due to my needs not being (perceived as) significant enough. For example, when I lived independently, I kept being told that I “am not crazy enough” for a psychiatric admission, yet once admitted, I had to lie my way out of the locked unit because the open units couldn’t meet my actual needs. Similarly, I’m quite scared that I’m not severe enough for the complex care units and yet I know for sure that regular care homes won’t meet my needs, in that in those, you either have a physical disability or you have significant mental health or behavioral problems.

There is exactly one home in the entire country, if I’m correct, for people who are both visually impaired and autistic. Then again, I doubt it’s either of those disabilities that causes me the most significant problems. I think, and so did the substitute behavior specialist, that it’s my brain injury. Then again, thinking this creates another catch-22, in that my brain injury was the reason my autism diagnosis was at one point removed, yet I didn’t qualify for an acquired brain injury diagnosis either because I had my brain bleed and hydrocephalus in infancy. That’s how I ended up with borderline and dependent personality disorder diagnoses, neither of which truly explains my actual needs.

I can only hope that, in the nine years since I was kicked out of the psychiatric hospital because no place wanted me, I have accumulated enough evidence for my genuine needs that I can at least get sufficient funding. Then the next step is finding a home that will use the funding to meet my needs.

#WeekendCoffeeShare (July 4, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s nearly 10PM as I start typing this post and I’ll soon need to brush my teeth, but I’ll finish this post before going off to bed. I just had my cup of green tea. If you’d like something to drink either hot or cold, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. The heatwave has thankfully ended and we now usually have daytime highs of about 24°C, sometimes even cooler. It’s been quite windy and occasionally rainy too, so I’ve actually even been wearing my jeans again.

If we were having coffee, then I’d tell you that, obviously, I didn’t meet my June monthly challenge goal on my Apple Watch and I didn’t get the perfect month award. So far in July, I’m still meeting my movement goal each day, but I’m not expecting to make it to a perfect month this time either.

I did ride the side-by-side bike to the next town’s market again yesterday. It had been months since I visited the market, but the guy behind the olive stall did recognize me.

If we were having coffee, then I’d tell you all that I celebrated my birthday at the care home on Wednesday. It was a bit difficult. I’d had big plans for baking two cheesecakes and making a pasta bake for the entire home (20 residents). The cheesecakes were a success, but during the pasta bake preparation process, there were some bumps in the road. However, in the end both were delicious! Yes, even the fellow resident who always complains about food being too spicy, loved my pasta arrabbiata bake. I’d made it once before but had then deseeded the peppers. Not this time.

Caramel cheesecake
Pasta bake

If we were having coffee, I’d tell you that I’ve also been quite crafty recently, particularly early in the week. I crafted two small butterflies out of polymer clay (using a mold), to be turned into earrings later. When my one-on-one for the moment saw my other molds, she wanted to use a bigger butterfly mold that I hadn’t used in years. She proposed to use multiple colors in a marbling technique and chose eight all very different colors, including both yellow and purple. I know a little about color theory and said yellow mixed with purple becomes a horrible brownish color. My staff said that, if the butterfly turned brownish, she’d take it home and display it on her fridge. I ended up giving it to her regardless, but it didn’t turn ugly! I do take the credit for being careful not to overmix the colors, though in hindsight I might’ve undermixed them for the effect she wanted.

Polymer clay butterfly

If we were having coffee, I’d share that this crafty endeavor made me decide to order several other small earring molds. My sister had gifted me a voucher for one of my favorite clay supplies shops and I spent it on molds, cutters and also two new colors of acrylic paint. One of the paints was named sorbet and I had absolutely no idea what color that’s supposed to be. I now realize I could’ve had AI describe the image on the website, but I ordered the color and only discovered that it’s a kind of pink once it arrived.

If we were having coffee, I’d finally share that specialized client support contacted the behavior specialist and they’re now going to get back to me. When I found out they wanted to talk to the behavior specialist, I feared my care agency was going to hijack the entire process. I’m still not convinced that they aren’t, particularly since finding out yesterday that the team leader had informed the staff that I’m leaving before I’d even gotten a clear idea of the consequences of the meeting with the substitute behavior specialist in which she’d posed the question whether I’m in the right place here. It doesn’t help that staff are making all kinds of assumptions about what kind of place would be better suited to me and what I find most important. The truth is, my main requirement is that a future placement’s team, including higher-ups, truly wants to understand and accommodate my needs. I don’t want to have to move again in two or three years.

June 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means it’s time for my monthly review. June, overall, was quite an eventful month. It had its low lows, but thankfully it also had its ups.

I started the month with a few meetings with the substitute behavior specialist. She had opened quite the can of worms by asking me whether I’m at the right place here. Initially, I didn’t see it as a negative that she was questioning this, as she at the time worded it in such a way as to indicate there might be a better, more suitable place for me. Now, nearly a month on, I’m trying to hold on to this belief but the thought is creeping up onto me that the powers-that-be want me gone as soon as possible.

The reason I believe this, in part, is the fact that, to the staff, it appears the fact that I’m moving is a given. I hadn’t interpreted the substitute behavior specialist’s comments like this, but now that they’re all talking in terms of my “having to” move, the whole thing scares me. I’ve made it clear that I don’t want to be shoved around like a parcel, but some staff are already asking me whether I’d be okay with being transferred to a place that would be temporary again. Well, no. If (and I deliberately say “if”) I move again, it’ll be to a place in which I can stay and grow old.

Other happenings this month included the meeting with the client confidante on involuntary care. This meeting was attended by my assigned staff and the regular behavior specialist. I’m rather skeptical about the whole thing, among other things because the behavior specialist is adamant that the door between the two sides of the home needs to be locked “for peace and quiet”. Unfortunately, the staff aren’t able to accept the reality that, if the door is locked for us, it means there’s no way staff can be having their breaks on the other side of the home without the continuity of care being disrupted. It looks like the staff are far from realizing that this is our home first and only their workplace after that. I doubt with my being at least coerced into moving, I’ll have the time to cause an attitude shift here.

I also had my birthday this month, of course. I turned 40. Since I’d cut off contact with my parents earlier in the week, they didn’t visit. My sister and her family did. I got a gift card for one of my favorite online polymer clay supplies shops. Yesterday, I spent it on molds, cutters and paint. I can’t wait for the package to arrive.

I also celebrated my birthday with my best friend. Haven’t opened the package of polymer clay I got from her yet, but probably will soon. Tomorrow, I’ll be celebrating my birthday at the home. It was quite stressful to get all the ingredients for the caramel cheesecake delivered. I also couldn’t fully follow the recipe, as I’d initially wanted to make three cakes, then did two and well let’s just hope it isn’t one major fail. The cakes are now setting in the fridge.

My wife/best friend and I, like I said in my coffee share posts, are almost done with the divorce too. The signing session with the mediator did bring up some emotions for me, as did the video call with the lawyer, even though it in itself was a breeze. I’m still struggling with all the big issues that came up when I decided I certainly don’t want my parents or sister to make medical decisions for me should I become incapacitated, as they’ll automatically be asked to after the divorce if I don’t appoint someone else (like my best friend) myself.

I still haven’t been as involved with meaningful activities as I’d have liked, but I did cook several times and crafted a few things out of polymer clay. I also created bracelets for my nieces, but they were too small. The younger niece got the bracelet originally meant for her sister and I created a new one for the older one. She’ll have to wait until my sister visits again though. So will my sister, as I had bought a book for her but forgot to give it to her when she visited.

Speaking of books, I haven’t been reading much because my Braille display is acting up and I don’t want to damage it further in this heat. However, my best friend suggested I give audiobooks a try and so I did. I just finished a Dutch collection of stories from a medical examiner. This was a challenge I took up that ended up proving to be positive.

I also gave starting an Open University course some more thought. I know I said last year that I wanted to start and never did, but honestly what’s the worst that could happen if I do sign up? I could fail and that’d mean my money would be wasted. Not even entirely, as the difference between a failing grade and a passing grade is a certificate I won’t ever be using anyway. I mean, it’s not like I’ll need to complete a course for a job or anything. It’s currently the end of the academic year, so I’m considering starting in September.

Lastly, I actually wrote this post in the block editor again. Not that I can find any information on the discontinuation of the classic editor, but I’m just challenging myself. I know this post doesn’t contain any images, but I figured out that the images in my last post were indeed fine and I was once again worrying for nothing. I just saw that the error I got when running my images through my screen reader’s image description tool, occurs on many other blogs, even photography blogs. Now I’m relieved!

#WeekendCoffeeShare (June 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I just had my evening coffee and will probably take a break from writing this post to have my soft drink and chips at 8PM. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been less hot and more humid than it used to be. The daytime temperatures this week were often around 18°C and it’s been rainy. We also had quite a few thunderstorms. I’m not liking the rain and still sweating as it’s still warmer than I’d like (is this perimenopause hitting?), but I tell myself this weather’s more normal climate-wise.

If we were having coffee, I’d share that I reached a perfect month with respect to my movement ring on my Apple Watch in May. So far, I’m still meeting my goal each day, though it’s been challenging with the rain. I didn’t complete my monthly challenge for May, by the way.

If we were having coffee, I’d share that I’m still struggling with my care situation and whether it’ll actually work here or not. The behavior specialist did reassure me that they can’t kick me out even if it turns out this place can’t provide the care I need.

I was worried about being kicked out after I had several more incidents in which staff used excessive force and I was quite blunt that I won’t have to put up with it. The meeting with the care confidante has been scheduled for the 16th. The substitute behavior specialist will be gone by then and the regular one will have the meeting with us. She can be a bit, well, challenging. This caused me to feel scared that, if I put my foot down that I won’t have to deal with force unless absolutely necessary to prevent/avert serious problems, she’s going to turn it into a battle around care refusal. I had this experience before. Let’s hope the meeting goes as well as possible.

If we were having coffee, I’d share that I did have some positive experiences this past week. On Monday, my staff and I decided to take pictures on our walk on grounds. I ran them through the image description tool built into JAWS and it was really good.





On Thursday, the same staff offered to help me create a soft pastel drawing using one of my unicorn templates. I hung it onto my bathroom door, but unfortunately it crinkled when I opened the door too many times, so I removed the drawing. I did snap a picture though.

If we were having coffee, I’d share that I cooked dinner twice this week. On Wednesday, I cooked minced meat, rice and vegetables for just myself. I didn’t really enjoy it, because I’d gotten it in my head that the mince was infected with prion-borne disease. My wife, who is a vegan, isn’t the right person to comfort me in this respect (though she did try), but she is the right person to advise me on how to cut back on animal products and eat more healthfully in general.

I decided to cook a vegetarian pasta dish this Saturday. On Wednesday, I had to make a grocery list for it and I decided kind of impulsively to cook the dish for my side of the home. I cooked orzo with spinach and tomatoes. I initially thought I wouldn’t like it (don’t ask me why I picked it then), but I did and so did my fellow residents!

I just ran the photo of this dish through the image description tool and I’m not as content with the description this time.

If we were having coffee, lastly I’d share that the final meeting with the divorce mediator will be on Tuesday. I’m struggling quite a bit with the reality of my wife and I divorcing. I mean, I try to tell myself we’ll remain best friends, but I can’t just shut down my anxious attachment style.

Besides, the behavior specialist does seriously wonder whether I’m in the right care home. I did tell her that, if it turns out it’s in my best interest to move again, I don’t want to be handed over like a parcel, like I was when I left Raalte and when I came here. This does have me consider several factors involved in potential new care homes, including the distance from my best friend. Like, if the most appropriate care home for me is across the country, does this mean I’ll be all alone there? It’s all quite complicated and stressful.

May 2026 In Review

Posted on by Astrid

Hi all! It’s the last day of the month and this means it’s time for my month in review. The month of May was harder than the month of April even and, if I had to summarize my attitude in one sentence, it’d be “I’ve had enough, this is the limit!”. Unfortunately, my saying that I’ve had enough, doesn’t mean people around me actually listen.

The month started with a weekend in which I experienced a major breakdown, during which I expressed quite a lot of hopelessness, leading to suicidal ideation. I expressed my despair in the living room with several other residents present. I realize this isn’t acceptable, but I can’t take full responsibility for the situation either. This among other things led the staff to decide to drag me to my room the next Monday for the crime of appearing in distress while in the living room outside of my one-on-one.

This was the final straw for me with respect to my staff disregarding my rights under the guise of my (or rather, other people’s) best interest and I decided to contact the client confidante on involuntary care. So far, even though I had the initial meeting with her three weeks ago, no luck planning a meeting with my support coordinator and behavior specialist and I doubt it’s ever going to happen. I’m currently at a very low point in my perpetually low trust of the powers-that-be. I would like to say I’ve hit rock bottom, but each time I say this, I realize things can get even worse.

All this does diminish my joy in the fun and meaningful activities I do engage in. Mind you, I still do occasionally do meaningful activities and I might start cooking for my side of the home again soon, but I doubt that with the way my staff are struggling to support me, it’s ever going to work.

My wife and I had two meetings on our divorce this month too. It’s been quite stressful even though we’re in agreement about what we want. The next meeting will be for us to sign the agreement and then our part of the process is over I think.

I’m noticing that, despite my hope of expanding my social circle this year, I’m self-isolating more. I did attend the monthly brain injury meeting this month but that’s as far as it goes. Nobody seems to want to support my hopes and dreams either and this frustrates me to no end, because with my executive dysfunction, I can’t pursue them without help.

I did start working in a neurodivergent-friendly dialectical behavior therapy workbook after I’d had the umpteenth argument with a staff. I’ve also let my support coordinator and assigned staff know I’d like to get help regulating my emotions, but I doubt it’s going to happen in a way that works for me. I mean, my staff obviously would like to see me suppress my needs and feelings again, while I do realize I need to express them less aggressively but this does mean expressing them earlier on.

A few weeks ago, the topic of whether I’m at the right care home was brought to the table yet again. I can’t shake the feeling that, so long as I haven’t become unmanageable to the staff yet, nothing will change and, if/when I do become unmanageable, I’ll be kicked right out. The higher-ups are trying to reassure me I won’t be kicked out “just like that”, but truthfully I don’t know what’d be worse: being kicked out or remaininng in my current place while nothing improves indefinitely.

#WeekendCoffeeShare (May 23, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I originally started typing this post yesterday evening but got distracted and distressed and then never finished my post. It’s now nearly 9PM on Saturday. I just had my evening soft drink but since it’s blazing hot out here, I’ll have to make sure to drink plenty of water. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d expand on my comment about it being blazing hot and talk about the weather. Early in the week, the daytime temp barely got above 12°C and we had rain. On Wednesday, the daytime temperature started to rise and today it’s 30°C. I honestly don’t mind as much, although of course it still being May this makes me worried for the real summer.

If we were having coffee, then I’d share that I am still in the game for a perfect month with respect to my movement ring on my Apple Watch. April was a hard month and I didn’t meet my goal several days. This month, I’m probably not going to meet my monthly challenge goal, but at least I still have a chance at closing my movement ring each day.

Yesterday, the staff and I originally planned on riding the side-by-side bike to the nearby lake for a cup of coffee (and my favorite caramel pie). Unfortunately, the bike wouldn’t work properly so we went for a walk instead and stopped by the institution townhouse for a coffee. They sometimes offer cake too, but apparently not this time.

If we were having coffee, I’d share that I made use of both my culinary activity time slots this week. Today, I baked a banana cake. The bananas should’ve been riper, but it was okay nonetheless.

On Wednesday, I cooked a one-pot pasta dish with broccoli, chicken and pesto sauce. I’ve given up my idea of cooking vegan dinners only, because all the prep is just too hard.

Besides, the behavior specialist noticed how happy cooking for my fellow residents made me and talked to my support coordinator about it. Soon, I’ll likely have a weekly opportunity to cook for my side of the home. Whether this will be full-on dinner prep each week, will have to be decided on.

If we were having coffee, next I’d share that the behavior specialist came by on Thursday for a talk. It’s a shame she’s a substitute, because it looks like she’s much more understanding of my situation than the regular one. I do hope that she’ll be able to talk some sense into the regular one when she comes back in a month or so though.

It isn’t like she wasn’t critical of me, of course. For example, she asked me whether there’s any risk in my writing about my life in the institution openly online for this care agency. I was up front with her that I can be quite harsh in my criticism of my staff and, if they read it, they may recognize themselves. However, I never name my institution or any individual workers. Not that, being that I’m not an employee, there’s any law prohibiting me from naming and shaming the institution if I so wished, but I can see it wouldn’t help my relationship with my staff. That’s why I don’t usually give out my blog address to staff.

One of the positive outcomes of our meeting is the fact that the behavior specialist and I got talking about my IQ. As regular readers of this blog know, the IQ that’s in my care plan was pulled out of mid-air, in that no-one except for me knows where it came from and until now, no-one seemed to care. It turns out she’d been looking for the report and couldn’t find it. Phew, finally! I explained that the report is nowhere to be found except on my personal computer. The report literally dates back to 1999 and isn’t the best childhood psych eval report I have at that. But it’s the one with the catchiest punchline, ie. the three-digit IQ score. I never realized myself until very recently that most staff, being practically educated, go right for catchy bullet points and, as a result, won’t remember the pages and pages of information about my emotional development when they’ve been wowed about my “super high” IQ. In any case, here’s hoping the behavior specialist will finally get this nonsensical number removed from my care plan.

If we were having coffee, I’d then ramble on non-stop about the other issues this meeting brought up. Do you have a couple hours? I just deleted an incredibly long paragraph because I saw my post was fast approaching 1000 words. Instead, I’ll wrap this up and go to bed, as it’s nearly 11:30PM by now.