Hope for My Home #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “starts with ‘ho’”. The first word that came to mind for me was “home”. In less than two weeks, I’ll be at my current care home two years. I remember celebrating the two-year mark in Raalte, almost fully confident that I’d stay there for many more years. In fact, at my care plan review at the end of September (I moved into the care home in Raalte in September too), I said I was 95% sure that I wanted to stay there. “Make it 98%, please,” said my home’s manager. A year later, I had moved to the intensive support home and, as it turned out, the higher-ups in Raalte didn’t want me back.

Another word that came to mind is “hope”. We all could use a little hope, I think. I want to start by saying that, if I celebrate my two-year stay at this home, it doesn’t mean I’ve jinxed (a word I only recently learned of) it and I’ll be voluntarily kicked out of here in less than a year, like in Raalte. I still hope there’s room for improvement in my care and, rather than being shoved around, I’ll finally be able to feel home.

I do admit I have good days. Today, I baked a Biscoff blondie with my staff. That was fun! I just so wish that my life were actually relatively good rather than my having to hope everyday that this day will not suck. Not that a day when I don’t bake sucks, of course. Life is more than Biscoff blondies. But when all I can tell my spouse on the phone that I’ve done today is walk and play dice games, it’s boring. And that’s while my life could be so much less boring if I were able to contribute. And I don’t just mean cooking, baking and crafting. I mean the less interesting tasks of daily life too. I feel accomplished when I’ve helped with some chores around the home. I hope that when, at some point, my new day schedule is created, life’ll be a bit more fulfilling.

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.

Of Elements, Songs and World War III

Posted on by Astrid

Hi everyone. Esther’s writing prompt this week is “Element(s)”. I was immediately reminded of the song The Elements by Tom Lehrer.

Tom Lehrer, who passed away this summer at the age of 97, was a comedian and singer, though to be honest like most male comedians, he couldn’t actually sing. Then again, neither can I, but I don’t try. I don’t care whether he could sing or not though, as his song lyrics were brilliant. The Elements isn’t nearly his best song.

I love his songs about current events. Though they were written in the 1960s, some still ring true, in a scary kind of way.

I honestly have been feeling more and more unsafe over the past year or so. I mean, Millennials like me were in our teens when the 9/11 terrorist attacks happened and the world (or rather I should say the West) hasn’t been at peace ever since. I mean, the world’s never been at peace, but in 1989, the West at least thought it had won. Not so. Now with Trump in office in the United States, I wonder who “the West” even are anymore. I, being in Europe, feel more and more like it’s not just Russia and China who might cause the next world war, but Alabama might as well.

I feel more and more scared when I use my mantra that everything will be okay in 2034. I know, I started this thing as a satirical take on the book 2034, which is about the next world war. I realize now that the authors of the book were actually quite serious, but a few years ago, I thought I could turn things around by saying everything will be okay. I don’t mean this to be blasphemous, but I honestly got the idea from the Bible. I mean, I remember when I was (pretending to be) a Christian, I at one point wrote that everything will be okay in 2021 and sort of hoped that Christ would return that year. He didn’t, and as a non-believer I doubt He will in 2034.

Of course, I try to hope that there won’t be a World War III in 2034 or ever. But if there will be, I hope whoever presses the button, will remember Tom Lehrer’s survival hymn.

August 2025 In My Kitchen

Posted on by Astrid

Hi everyone on this last day of August. We had rain in the weather forecast for the last few days, but it wasn’t more than a drizzle. Hopefully tomorrow there’ll be more.

I’m joining In My Kitchen again even though August wasn’t all that exciting with respect to kitchen-based or other food-related activities. I have a few plans for the first week of September. Here’s hoping I can be more involved in the kitchen over the rest of the month too.

I didn’t cook dinner at all in August, but I did create a few little treats for myself and sometimes my fellow residents. Like, on August 4, I made a mascarpone-based dessert with raspberries and blueberries on top.

I also prepared overnight oats again. The next morning, I added the toppings and enjoyed my healthy’ish breakfast. Now I doubt that it’s actually healthier than my regular breakfast, but who cares?

I made a few smoothies too. In one of them, I put pineapple, spinach and almond milk. My idea was to prove to one of the staff, who didn’t like spinach, that you won’t taste spinach in smoothies. Guess what? We didn’t taste the spinach, but we didn’t taste much of anything else either. I eventually added a banana and some honey, but it still was one of the blandest smoothies I’ve had.

Like I said on Friday, I also have been making coffees with foaming milk on top. The truth is I don’t really like them, but my milk frother was €70 and now it feels less like a waste of money. Besides, my fellow residents like the coffees.

Lastly, yesterday I spent the day with my spouse in our house. We had originally planned to cook dinner together, but ultimately my spouse ended up doing everything. We had an easy broccoli and chicken stir-fry with hot sauce and noodles. My spouse asked me whether it was as good as the meal delivery service meals. 😉 It was a lot better!

Speaking of which, the meal delivery service now has “2.0” written on many of its foods. I get Siam sauce 2.0, for example. Once, I even got “cauliflower 2.0”. Well, what can be improved or changed about just cauliflower? The brown rice doesn’t have 2.0 written on it, but it’s been horribly undercooked lately. I am of the opinion that the higher-ups deciding which meal delivery service to contract, or that the institution even has to contract one rather than operating its own kitchen, should be forced to consume a meal delivery service dinner once a week.

How I’m Feeling (Or Something Like It)

Posted on by Astrid
Daily writing prompt
How are you feeling right now?
View all responses

I’m not sure how I feel right now. It’s past 11PM and I badly want to write, but don’t have the slightest idea what about. That’s probably why I’m turning to the WordPress Daily Prompt, which is quite generic today if you ask me. Or is it? Maybe it’s just that I, being quite intellectually-focused, don’t know how to answer this.

Wait, I was an Enneagram type 4, right? I guess not. I’m perpetually confused as to whether I’m a 4w5 or 5w4. Maybe that means I’m some other type entirely. Or the Enneagram is just pseudoscience (which I know it is but feel in my heart that it’s not).

But I digress. I’ve been feeling all sorts of things today. In the afternoon, I rode the side-by-side bike to the next town to buy some groceries. I also bought a hand mixer and a baking tray, because next week I’m going to bake Biscoff blondies. This was a fun activity, so I felt good. Retail therapy, I guess.

In the evening, I felt overloaded because my spouse was telling me a story on the phone at the same time that a staff entered my room. This had me feeling stressed out for an hour or so.

Then I felt excited again, as I was going to craft a special coffee for my fellow residents and staff. It’s special because it had hazelnut-flavored coffee syrup in it and foaming milk on top. I’m no barista or even close, but I liked the activity. One of my fellow residents, the last time she got my special coffee, was over the moon about the “liquor” in it.

Now it’s 11:30PM and I’m probably supposed to be in bed, but I don’t really feel tired. I think I’m just going to read some more blogs and then go to bed.

Connecting to a Higher Power or Purpose

Posted on by Astrid

Hi everyone. I’m motivated to write but don’t know what about, so I looked through a collection of journaling prompts. For some reason, the section on spirituality and belief caught my eye. One of the prompt questions is how I connect to a higher power or purpose.

This, honestly, was a lot easier when I still thought of myself as a progressive Christian than it is now. Back in the day, it was relatively easy for me to find inspiration and spiritual guidance. Now, I still occasionally look at Christian-based sources, because I still have a ton of devotionals downloaded off Bookshare. Still, it feels off. It feels as though I’m not playing by the rules of the game that is religion. Not that religion is a game, but one of the reasons I left Christianity is the fact that it is too much tied to hate towards for example the LGBTQ+ community. I always knew, even when I had suppressed my queer identity, that I was an ally to the community. However, the truth remains that the Bible is horribly homophobic. One could say that it was written 2000 years ago, but then one would essentially abandon one of the core concepts of Christianity, ie. the idea that the Bible is God’s word. I could say that I don’t care, call myself a spiritual seeker and take what speaks to me and leave the rest. But I wouldn’t be a Christian. And, if I did still find inspiration in Christian devotionals, wouldn’t that be me essentially betraying my queer self and, furthermore, the entire queer community?

But I desire to find meaning in life. I’m still struggling with connecting to a higher power now that I no longer follow Jesus. I do believe there’s “something”, some kind of higher power, but I don’t know what it is and where and how to connect to it.

I keep trying to meditate on Insight Timer, but this feels as half-hearted as my prayers were when I still claimed to be a Jesus follower. I’m struggling to genuinely believe in and surrender to a higher power. Maybe this means I’m actually an atheist or secular humanist, but I do “feel” there’s more. I just don’t know how to align my thoughts and actions with this feeling.

There are other ways of finding a higher purpose in life. I tried acceptance and commitment therapy, which is highly based on the idea of living by your values. Then again, do I really know what my values are? No, I have no idea.

I actually often feel drawn to the fluffy side of spirituality. Affirmations, essential oils (when I still had a diffuser), that kind of stuff. There’s nothing wrong with this, really, except that it often leads to a “take what I like and leave the rest” kind of attitude. And I think there’s something wrong with that, but I can’t pinpoint what it is.

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.

Neurodivergence and Emotional Dysregulation

Posted on by Astrid

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

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

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

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

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

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

I’m joining in with #WWWhimsy.

Simple Pleasures #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “simple”. When I saw the prompt yesterday, I immediately thought I had to write about simple pleasures. You know, the little things that make life worth living when all else seems rather grim.

I could of course nag on about the cup of green tea. The one I got at 9PM one day over six weeks ago and that, while enjoyable, also triggered a flood of negative emotions because, really, is life all about a cup of tea? That being said, I’ve tried to make it a more regular habit to ask for a cup of tea at around 9PM.

Most of the simple pleasures I can think of right now, involve food, but not all do. Birdsong is also a simple pleasure I enjoy. So was a shower I took on Thursday when I was feeling particularly miserable.

As a multiply-disabled person living in an institution, I sometimes find joy in things that are out of the ordinary for me even though these things are normal for most people in my country and the rest of the developed world. They are, however, luxurious to people in less fortunate parts of the world. I also realize I am privileged to be able to go online when I want, as even in some other developed countries, people in the care system can’t. That doesn’t mean my life is easy. It’s not. I may have it better than people in many parts of the world, but that doesn’t mean my struggle isn’t real.

However, I do try to find positives each day. It sometimes feels like an obligation, because I used to be told all the time that I’m being negative on purpose. However, it does genuinely help me to acknowledge the simple joys each day provides.

#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.