#WeekendCoffeeShare (September 27, 2025)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare for the first time in over a month. It’s nearly 10PM as I start typing this, so no more coffee for me. I did have a mug of green tea about half an hour ago, but for now it’s just water. Feel free to grab yourself a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Not that I’ve experienced much of it, as I spent most of the week indoors with what I believe to be COVID. The daytime highs most days have been around 17°C and we didn’t get much rain.

If we were having coffee, then I’d share that I paused my activity rings on my Apple Watch because I was too obsessively trying to meet my goals while being sick. I originally intended to restart them yesterday, but for now they’re on pause until this coming Tuesday.

If we were having coffee, then I’d tell you that, today, I finally feel like I might be on the mend. Being me, I did immediately go for a 30-minute walk. My average heartrate was 140BPM, which is high even for me. Let’s hope I won’t be exhausted tomorrow.

If we were having coffee, then I’d share that my spouse finally visited me today. We hadn’t seen each other in a few weeks even though it was our wedding anniversary on the 19th. Then though, I was sick with that could-be COVID thing. Today, we still didn’t do a lot. We went to a nearby pancake place to have lunch.

If we were having coffee, I’d tell you that, on Wednesday, the Center for Consultation and Expertise consultant came by. Like I said on Tuesday, I was only informed a day in advance and the consultant gave as little information about herself as she could (ie. just a first name). I feel incredibly distrustful of the entire process because of this. One of my assigned staff, the student, attended the meeting with me and it was more her telling the consultant what she thinks could be improved about my situation than me. I honestly fear this whole consultation is going to be a waste of time and money, as if the staff already know what I need (which, frankly, they don’t), why involve an independent consultant?

If we were having coffee, lastly I’d share that the student who’s my assigned staff, is leaving on Monday. She’s going to work at the intensive support home I used to live at and I’m struggling not to use that against her. I did, with some difficulty, create a necklace for her, which I’m going to give her when she has her last shift here.

The Could-Be COVID Chronicles, September 2025 Edition

Posted on by Astrid

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

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

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

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

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

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

Laughing Over Lemons

Posted on by Astrid

Laughing over lemons. That phrase has been on my mind for a few days. It’s a twist on the phrase “When life hands you lemons, make lemonade.” I think sometimes it’s best to laugh at our worst days.

Like, when I had only been in the psychiatric hospital for a day back in 2007, I was telling psych ward jokes. You know, what’s the difference between the patients and the staff on psychiatric units? First, the patients get better and leave. Second, the staff have the keys. And there was another one. Something about not all patients believing they’re God. I think those last two apply to institutions for people with developmental disabilities too. I mean, particularly at the intensive support home (ie. the home for those with severe challenging behavior), my spouse said the only noticeable difference between the residents and staff was the staff carrying a pager to beep for assistance when a resident becomes violent. Other than that, both staff and residents were usually staring blankly at the TV.

We, the residents, were often blamed. Or at least, the other residents (other than me, that is) were. They have no motivation for life and they are too old to teach. Besides, no-one can force them away from the TV because that would be involuntary care. That’s what I was told. Never mind that I’ve witnessed on many occasions staff telling residents that they had gotten enough “attention” for the day because staff had been sitting with them for fifteen minutes with a cup of coffee.

I am often quite cynical in my humor. If only my cynical jokes weren’t actually 99% truthful. And now all I can hope for is that my joke about everything being okay in 2034 (because the world is going to be blasst to hell) isn’t going to turn out 99% truthful too.

I am linking this post up with Friday Writings. It isn’t necessarily a hopeful or positive post. However, I do feel that laughing over the many lemons life hands me and many other people in this world and age, can certainly be helpful.

Gratitude List (August 24, 2025) #TToT

Posted on by Astrid

Hi everyone. It’s been a while since I last joined Ten Things of Thankful (#TToT), but today, I feel like it. Here are my gratefuls for the past week.

1. Baking a cake. Earlier this week, I decided to use up the second of three cake mixes I’d gotten from my parents for my birthday. It was raspberry cake. Unfortunately, I found out today that the third mix had an expiration date in April, so I threw it away. Now I do think the other mixes probably had their expiration dates at the same time, as they came in one package, but oh well.

2. A long bike ride. On Wednesday, the staff and I rode the side-by-side bike to the nearby town to get groceries, only for me to realize then that I didn’t know what groceries I’d wanted to buy, so we decided to just bike around. It turned out I’ve broken my record for the longest bike ride at 19.3km.

3. The night staff. I’ve been needing their support a few times lately and often feel like a burden. The night staff used to make that feeling worse by telling me to “just try to sleep”. Thankfully, recently they’re telling me that I am not a burden and they’re there for me as much as they are there for everyone else. Even if they don’t fully mean this, it helps me feel more comfortable.

4. The staff having cooked chicken and noodles for us on Wednesday.

5. An institution cafeteria sandwich on Thursday.

6. Green tea. Always, green tea. I’ve been requesting it in the evening more often lately and that’s been feeling good.

7. My having been allowed to play DJ again with the home’s large Bluetooth speaker. I mostly played ABBA songs, but did one MARINA song too, realizing only when it’d started that it was rather explicit. Oh well, most of the residents don’t know English and the few who do, just chuckled at it.

8. Mini candy bars. A fellow resident’s parents brought them yesterday and they are yum! I only found out that they were from Aldi today. If I’d known earlier, I’d have asked my spouse to drive by there on the way from Apeldoorn to the institution so that I could pick up a bag myself.

9. Diarium, a diary app. Recently, there was a discussion on Reddit about journaling and I decided to give this app, which is available on both Windows and iOS, another try. It has a lot fewer features than Day One, but Day One’s web-based interface (there’s no PC app) honestly sucks.

10. The weather. We’ve been having lower temps this week than last week and I’ve had to wear my jeans again and even put on a jacket some of the time. Still, it’s been warm and sunny enough.

#WeekendCoffeeShare (August 15, 2025)

Posted on by Astrid

Hi everyone on this warm Friday evening. I’m joining #WeekendCoffeeShare. I usually do mine on Saturday, but I’m motivated to write now so let’s make use of it. I just had my evening soft drink and a single-serving bag of chips. I’d recommend you’d grab something to drink if you were here. Let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been hot all week. In fact, I’m pretty sure we have a local heatwave, meaning five days in a row of daytime temps above 25°C, of which three with daytime temps of 30°C or above. I haven’t checked the news in months and don’t want to check it now, but I don’t think it’s a national heatwave.

If we were having coffee, then I’d share that, thanks to the nice weather, I was able to eat outside three or four times this past week. Did I share my spouse gifted me a new outside table, because I’d broken the one I’d gotten last year? My spouse had ordered it online and had had it delivered to the institution. We hadn’t seen each other since, so yesterday after a lot of pestering, I decided to snap a picture. I rarely take pictures fully independently, so if this one’s unclear, I apologize.

If we were having coffee, then I’d tell you I’m still going strong with my movement and exercise goals on my Apple Watch. On Saturday, I did in fact break my active calorie record. Yesterday, I broke a record with the longest bike ride. My Apple Watch also said I burned the most calories during a cycling workout, but I doubt that’s true.

If we were having coffee, next I’d announce my participation in the Walk on Sunshine on October 4. It’s a walk to raise money for the Dutch cerebral palsy charity CPNederland. The goal is to walk at sunrise. Sunrise is at 7:45AM that day and the staff usually don’t get here until 7:30, but one of the staff agreed to come here early and do the walk with me. I signed up for the 5km walk, because that’s a challenge for me particularly in the morning, but not impossible.

If we were having coffee, lastly I’d tell you all that I’m still struggling. I experience a ton of trust issues towards my staff and am not sure these are entirely unfounded. Like, today my spouse and I were on the phone during my entire late afternoon activity and, though it was nice to talk to my spouse, I worried that the staff are going to cut my care hours because of it. After all, for some time they tried to make my spouse visit me each Sunday so that they could cut my hours.

Honestly, I think I’d be much more independent if I knew that, when I have a bad day or a bad moment, I can always get some extra support. In this sense, my psychologist back in the mental hospital was right that anxiety is part of the reason for my dependence. However, her subsequent actions to “treat” me, ie. kicking me out of the hospital into independent living with minimal support, actually worsened my situation. So did my staff’s decision back last year about my having to compensate for every moment I needed extra support due to distress. These and other strategies, while intended to encourage self-reliance, actually achieved the very opposite. After all, my abilities fluctuate and my mental state doesn’t adhere to a day schedule, so that I’m only in distress when I have one-on-one. No, I don’t purposefully work myself up in order to get more support, but my mistrust of my staff’s continued actual support does lead to distress.

#WeekendCoffeeShare (August 9, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM, so I just had my last cup (two cups, in fact) of coffee for the day. I’ll probably take a break from writing this blog post for my soft drink at 8PM. Please join me as we chat.

If we were having coffee, first as usual I’d talk about the weather. It’s truly beautiful! Today, the temperature rose to 25°C and it was quite sunny. Rain isn’t in the forecast until next Thursday I believe. I know, climate change and all, but I’m enjoying the summer while I can.

If we were having coffee, I’d share that I am still going strong with my physical activity goals. Yesterday, a staff mentioned the trampoline that’s on the campsite near the institution and we decided to check it out. Today, I went on the side-by-side bike with another staff. Because of this as well as having walked a lot today, I might break my active calories record according to my Apple Watch.

If we were having coffee, next I’d tell you that I unfortunately haven’t been crafting much lately. On Sunday, I created polymer clay earrings that are still waiting to go into the oven. Other than that, no crafty endeavors.

I did, however, create a dessert for myself and my fellow residents on Monday. It was good.

If we were having coffee, then I’d tell you that the rest of the week was quite hard. There’s this temp worker who is absolutely clueless about how to support me and yet he’s assigned to me almost everyday. Staff keep saying I should be giving him feedback more when he’s acting in an unsupportive way. First of all, well, no, that’s not my responsibility. They don’t ask the other clients to give feedback either, but when I point this out, they say it’s different for them because they can’t. I can, sometimes, a little bit and I tried this week in fact, but the temp worker didn’t learn a thing from it. Then I get told that the staff assign to me who they choose and it’s my responsibility to deal with it.

I also was told that, when the staff feel someone is trained well enough to support me, they will be assigned to me and I don’t have a say in it. All this comes across as if it’s me being deliberately difficult with certain staff based on arbitrary things, while in reality it’s the way that they act that makes certain staff more difficult for me to deal with than others. Besides, I’ve had staff assigned to me who themselves don’t even feel they’re capable enough just because these staff want to please and their colleagues pressure them. It may be easiest for staff to assign the most inexperienced temp worker to me because I try to be helpful and, when I am not, it is easy to blame me for allegedly playing favorites.

If we were having coffee, lastly I’d share that the Center for Consultation and Expertise found a suitable consultant for my case, but due to the summer holidays, the first contact won’t be until the end of August. This will unfortunately be a phone call with the behavior specialist. I’m not very trusting of the whole process at the moment, to be honest.

#WeekendCoffeeShare (August 2, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s almost 10:30PM, so no more drinks other than water for me. That green tea I got a month ago has gotten a meaning of its own lately, symbolizing my lack of independence and self-determination. But I’m getting ahead of myself. Grab yourself a favorite drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been rainy most of the week and honestly less warm than I’d like it to be. I refuse to wear long-sleeved shirts in the middle of summer, but today, I almost regretted going out in just a T-shirt.

If we were having coffee, I’d tell you that in part due to the weather, I haven’t been as physically active as I’d have liked lately. Today, my spouse and I wanted to go for a walk but it was raining pretty hard so we turned around within five minutes. That was when I was out in just a shirt. I’m hoping I can still meet my movement goal on my Apple Watch today.

If we were having coffee, then I’d share that I was at our house today. My spouse got a new cat about six weeks ago and I hadn’t met him yet. His name is Caleb. Unfortunately, he hid under our bed as soon as I walked in the door and had to be dragged down by my spouse for me to be able to pet him.

We originally intended to cook dinner together or get pizza delivered, but since the weather didn’t permit us taking a walk and my spouse didn’t want to stay inside the house all day, we decided to drive to Apeldoorn. I needed a new jacket, after all. My old one, I’d bought seven years ago and it’d finally gotten damaged beyond repair in addition to being quite dirty. When my spouse asked me my size, I made a guess. It turned out the old jacket was several sizes bigger. Then again, back in 2018 I was at least 10kg heavier than I am now. I finally got a jacket with a size inbetween my original guess and the old one’s and it fits perfectly.

If we were having coffee, then I’d tell you that, as of yesterday, I’m once again a tiny step down with my medication. Specifically, I’m now on the absolute lowest dose of pregabalin. I was never on a high dose anyway, in fact having been on my start dose for years, but as it is in medicine, apparently going up is easier than going down. Six weeks from now, I’ll most likely be completely off of pregabalin.

If we were having coffee, then I’d share I’m still struggling. Part of it is the realization that my life is far from “normal” and the fact that I feel guilty about not accepting this reality. I constantly have my last home’s staff’s words in my head about never having a perfect day. I am also constantly thinking of ways in which my life could be even a tiny bit more meaningful.

If we were having coffee, finally I’d share that I did have some good moments over the past week. Like I said on Thursday, I have been quite active in the kitchen. I also on Thursday crafted another clay parrot.

The staff who’s leaving, took this one and the one we made last week home with her yesterday.

Tomorrow, one of my assigned staff is going to do my morning activity with me and we agreed to work with clay again. I have yet to think of some ideas for what to make. She wanted an elephant, but I’m not yet sure how to go about doing that.

July 2025 In My Kitchen

Posted on by Astrid

Hi everyone. It’s been a few months since I last participated in the In My Kitchen linky, because I didn’t do much of note in the kitchen. This month I finally got active in the kitchen again, so I’m participating in the linky again.

First, I got some cake mixes for my birthday last month, so on July 3, I set out to bake one of the cakes. I got strawberry, raspberry and lemon-flavored cake mixes and selected the one with strawberry. To be honest, I had expected there to be more strawberries in it. It in fact looks like a plain yellow cake and that’s what it tasted like too.


Over the next few weeks, I was greatly struggling and didn’t do anything in the kitchen. That is, maybe I created a smoothie once, but I’m not even sure about that.

Speaking of smoothies though, I did create several that I loved over the past month. One, I made yesterday. I used frozen cherries, vanilla-flavored soy milk, cacao powder, instant coffee, a little honey and a dash of sea salt to make the flavors pop.

About two weeks ago, I finally got the idea again to whip something up and I decided to make overnight oats.

I made overnight oats once again this week, topping them with a tropical dried fruit mix that has an E Nutriscore, meaning it is about the least healthy food choice in its category. No photo this time.

A staff who is on sick leave and occasionally pops round as an extra, offered to help me cook a meal for my side of the home the next Tuesday. I cooked curried rice with chicken, bell peppers and bok choy. I hadn’t had bok choy since childhood and incorrectly assumed its green leaves can’t be eaten. The meal doesn’t look as thin as I believe a curry should be, but it was delicious.

The same staff came over here this Tuesday again and I was again allowed to choose a meal and cook it with her help. I chose a vegetarian pasta bake with peppers, onions, garlic, canned tomato chunks and topped with mozzarella. One of my fellow clients said she didn’t like the mozzarella, but I think it was because she didn’t recognize it and I believe she did eat it after all. Everyone else loved my meal. Next time, however, I’m going to leave some of the seeds of the peppers in, because I’d have loved it even more than I did now with a little more spice.



Since I have been cooking more lately, I decided to look for an app to organize my recipes. After trying many apps, I settled on Recipe Keeper. Like I mentioned in my coffee share last week, one of its drawbacks is the fact that I can’t have my password manager save the password. This makes me a little suspicious, but I try not to care.

#WeekendCoffeeShare (July 26, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 9:45PM, so all I’ll have to drink before going to bed is water. I don’t mind though and hope you don’t either. 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 raining all week, but temperature-wise, it’s been nice. We had daytime highs in the low 20s Celsius most days. Today, the temperature rose to 25°C. I hadn’t expected it to rain, so didn’t take a jacket with me when driving to Apeldoorn with my spouse. Thankfully, it only rained when we were in the car or somewhere else inside.

If we were having coffee, next I’d share that my spouse and I may not be divorcing after all. It’s a long story that is too personal to share on a public blog. The short version is that I sent an impulsive text last week asking my spouse to finally make arrangements, because I wanted to live independently. The reason for the text had nothing to do with my spouse, but it did get things set in motion. As it turns out though, it’s probably not practically in our best interest to divorce.

If we were having coffee, I’d go into the reason for said text: one of my “favorites” among the staff is leaving and this is at a time when I’m struggling significantly with most other staff seeming at once not to agree on any way to support me but somehow agreeing that I’m a pain in the neck. At least on a weekly basis, I hear stuff like “You can’t go anywhere anyway” or “Your spouse doesn’t want you in this state” when I’m being restrained or otherwise having my autonomy taken away.

Furthermore, it looks like my staff have decided that neither I myself nor my spouse have my best interest in mind, while in that order, we’re the ones most adamantly advocating for me. However, I saw impulsive comments my spouse made after we found out divorce may not be an option cited in my report. This wouldn’t have been such a big deal, had staff also objectively reported their own comments, like all the “You can’t go anywhere anyway” stuff. The way it sounds now, my spouse sounds like the bad one.

One of my assigned staff even got me to agree on getting more information about guardianship because she somehow feels that a person who doesn’t know me but knows the law is better able to make decisions for me. I have yet to tell my staff no on this one.

If we were having coffee, I’d share that I did finally work with polymer clay again. I made a parrot for the staff who’s leaving, because this staff has two parrots. We have plans for making her other one out of polymer clay sometime this coming week.

If we were having coffee, lastly I’d share that I’ve been obsessing over recipes and cooking again. Like I said yesterday, I made a curry for myself and my fellow residents on Tuesday. The staff who helped me with it, proposed we do cooking again this coming Tuesday. This time, I chose a pasta bake. I’ve also been making smoothies and overnight oats recently.

I have an app on both my PC and iPhone to organize my recipes. It’s called Recipe Keeper and I’m half convinced it’s spyware like TikTok. Other than that, its only drawback is the fact that somehow I can’t have my password manager remember the password. This has me paranoid too. However, it’s the only app that’s available on both iOS and Windows that is remotely useable for me.

Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.