Beating Myself Up Over Failed Intentions… #JusJoJan

Posted on by Astrid

Hi everyone. Today I’m struggling quite badly yet again. I’m feeling quite depressed and like life is slipping me by. That’s not good, but sometimes it’s the best that can be.

When I set my hopes for this year, I fully intended to experience more, yet here I am, six days into the year and I’ve abandoned Morning Pages, am in bed a lot again or just blabbering on to my staff about whatever.

However, feeling guilty about not having made the most out of the day, means even more of my time and energy is wasted. Rather than beating myself up over a day gone to waste, I’d much rather make the most out of each moment. And sometimes “the most” is pretty little.

About half an hour ago, I was talking on the phone with my wife again and responded to the question of what I’d done today by saying that I’d gone on a walk and played dice, so not much. Then I realized that I’d also made a necklace. Remembering that made me smile to myself.

Of course, my day schedule is still not working as it should and that might never change, but it’s up to me to make my life meaningful. And sometimes, that means hyperfixating on some random thing, like the fact that I almost certainly finally found the perfect recipe manager. It’s my fifth or so, so this did mean having to transfer my recipes from my previous one into this one. However, this did give me another opportunity to look up interesting recipes.

Now it does often frustrate me that, even though I make plans to cook or bake, they rarely come to fruition. However, like I said above, fretting over this means even more time and energy has been wasted.

This post was partly inspired by today’s #JusJoJan prompt, which is “intentional”. One thing I beat myself up over, is the fact that I didn’t blog yesterday and hardly wrote anything else, so in that sense who am I participating in #JusJoJan? There’s however no jotting police other than my own inner critic.

#WeekendCoffeeShare (January 3, 2026)

Posted on by Astrid

Hi everyone. It’s nearly 9:30PM as I start typing my #WeekendCoffeeShare post, so no more coffee for me. I just had a cup of orange-flavored green tea. 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 cold, windy and snowy thanks to weather phenomenon Anna in Scandinavia. I can deal with the cold, but the wind and snow are rather annoying.

If we were having coffee, then I’d share that I haven’t really been moving much lately. I signed up for the free trial of Apple Fitness+ a few weeks ago, but canceled it on Thursday because it kept getting in my way when I tried to change my workout type on my Apple Watch. Not that I’ve done much other than walking, but I did try to dance once and somehow my watch kept messing up.

If we were having coffee, next I’d say that I’ve been struggling quite badly over the past few days. My day schedule is still a never-ending battle, I still haven’t heard from the Center for Consultation and Expertise consultant and on top of that the behavior specialist responsible for my home will be going on maternity leave soon. Yesterday, I also found out that I won’t be getting a new assigned staff now that my assigned staff is going to be my support coordinator. It wouldn’t have been a problem, had she had enough time in her work week to be both support coordinator for ten clients and my assigned staff, but she doesn’t. Staff keep saying I can go to any staff with my concerns, but this is actually not going to work for me with everyone having different opinions and no-one ever taking responsibility for so-called team decisions.

I had a meltdown over this whole thing yesterday. Staff kept arguing with me that I am too needy of my assigned staff and I have the capacity to understand the staffing situation so I don’t need an assigned staff. That last comment was made when I said the other clients often cling to their assigned staff people too. I’m honestly fed up with all the claims that I’m fundamentally different from every other client.

If we were having coffee, I would share that I quit Morning Pages already. I started on January 1, but last night hardly slept at all, so I decided I was lying down after breakfast again. Besides, the app I used won’t let me browse entries with VoiceOver, so I can never read what I wrote. Not that you’re supposed to for a while when you’re truly doing The Artist’s Way, but eventually I wish I could check back.

If we were having coffee, I’d finally share something positive: I’ve been crafting again this past week. On Tuesday, I made yet another polymer clay cheer up frog and, on Thursday, I made a unicorn with seed beads for its eyes. The frog, I once again made in record time: just over twenty minutes. And it’s awesome.

Yesterday, I was talking to my assigned staff / support coordinator about possibly making the unicorns and cheer up frogs to be sold at the care agency gift shop in the next town. The reason I went into it wasn’t altogether positive, namely the fact that another resident now has to pay for support to accompany him to his football and I’m scared that, eventually, the higher-ups will decide polymer clay isn’t “work” so I’ll have to pay for one-on-one support with that too. However, I do like the idea.

My Hopes for 2026

Posted on by Astrid

Hi all! I’m publishing a second post today to share my hopes for the new year. I don’t call them resolutions and I honestly hardly look back at them over the year, but it’s somewhat fulfilling to notice that I did make about half of my hopes for 2025 happen indeed. In fact, when I was talking with my wife about the year 2025, I realized I’d done better than I had expected, contrary to what I said in my yearly review. Anyway, here are the things I hope to achieve in 2026.

1. Get in more and more varied physical exercise. I am pretty sure that this is going to be a hard one, because it looks unlikely that I can go to the gym regularly or go swimming again. However, there are other ways too, like yoga, pilates, etc.

2. Do more meaningful activities, such as cooking, baking and crafting. This was one area in which 2025 has been less successful than I’d hoped but more successful than 2024. I’m still hoping to make that standing unicorn sculpture I mentioned yesterday happen. However, even if that’s not going to happen, I hope to include crafting and kitchen-based activities in my day schedule regularly.

3. Focus on mindfulness and gratitude. I am finding that even a few minutes in the Gratitude app helps lift my mood. I honestly think this is because it’s something new, but I hope that I can keep up the mojo. I already started this habit in 2025 when I wrote the positives and negatives of each day and E-mailed them to my assigned staff. I’ll continue to do so this year.

4. Improve my wake/sleep schedule. Over the past six months or so, I almost always spent most of the morning in bed. I’d really like to change that. Today was good in this respect.

5. Write more regularly. I don’t just mean blogging, although I seriously hope to do more of that too. I mean, my blogging year was better than 2024, but 2024 was about the most disappointing year blog-wise. I hope to write more this year than I did last year. I also started doing Morning Pages again. I however don’t get up early for them, because I know that’s a recipe for disaster. Rather, today, I did mine after breakfast, when I used to hop back into bed.

6. Further taper my medication. I’m having another meeting with the intellectual disability physician, who prescribes my psych meds, next week. So far, I’m pretty sure I’m still able to further decrease my med dosage.

7. Stay relatively mentally stable. This is an almost obligatory item on the list, as I honestly think the above have covered all I can do to help myself along in this respect. Some of the contributing factors to my deep lows have been related to external circumstances. Now I wouldn’t say I have absolutely no influence on those, but it’s not like I’m all-powerful.

8. Stay true to my wishes and needs with respect to my care. This means, for example, that I will continue to assert my right to informed consent for all of my care agreements.

9. Expand my social circle. Like I shared on Monday, I fully intend on going to more meetings in 2026. At least one of those, the brain injury support meeting, is local. I also intend to go to the nationwide cerebral palsy day in April. I intend to go by myself. In previous years, I went with my mother-in-law, but I’m not in contact with her anymore. Besides, I am pretty sure that, now that I know quite a few other participants, being accompanied by her is a hindrance to my social inclusion more than a help.

10. Be more conscious of my food choices and eat more healthily. I stepped onto the scale yesterday evening and the number wasn’t pleasant. Now I do know that part of that is probably holiday weight and part is the fact that I’ve been moving less. Regardless of my weight though, I seriously hope to be making healthier food choices.

2025: The Year in Review

Posted on by Astrid

Hi everyone. It’s time for my yearly review. This year wasn’t exciting in any particular way. I’m not sure whether that’s actually a bad thing though. I mean, I didn’t decide to move yet again and that’s a good thing. Most of the bad parts of the year not being exciting are exactly that: it was incredibly boring.

That’s also what led to the most significant lows of this year: the fact that, for a while, an extra cup of green tea at 9PM would be my highlight of the week. I have, over the past couple of months, been able to make this cup of tea a regular occurrence, so in that sense things are improving.

When I looked at my hopes for 2025 a few days ago, I noticed most of them weren’t particularly ambitious. I mean, I was hoping to improve my crafting and do more cooking. I can’t remember whether I had already tried to ask ChatGPT how to build an armature for a standing polymer clay unicorn and, as such, whether this idea was behind that hope. If it was, I can safely say that I didn’t achieve this. I must say I haven’t improved my polymer clay skill much at all. I have, however, picked up jewelry-making again and my wife loved the necklace I made her.

I also did a lot more cooking than I did in 2024. It wasn’t as much as I’d hoped when the behavior specialist promised me early this year that when my one-on-one got approved, she’d allow for a weekly cooking activity. I am cautiously optimistic that this will change in 2026.

I had also hoped to find a physical activity other than walking that I could do regularly. No such luck. I’m not sure this will change in the new year.

Tapering my meds was one of the major successes of this year. I can’t remember what dose of aripiprazole I was on at the start of 2025, but I’m now down to 11mg a day and have also been able to completely go off my pregabalin. I also must say that I’ve been able to stay relatively mentally stable. Yes, I did have a deep low in July, which is once again down to the fact that I had been going through the motions for so long that life felt like I was not really living it.

This year was also the year we had yet another Center for Consultation and Expertise consultation. I haven’t yet found out what the consultant is going to recommend even though she said she was going to let me know by mid-December. I doubt it’s going to lead anywhere significant, but maybe I’m wrong.

Finally, this year was the year my wife and I were trying to figure out our relationship status. Over the summer, we were planning to get a divorce, but this eventually didn’t happen. We’re still unsure as to how to align the legal situation with our actual feelings for each other and it looks likely divorce will be on the table sometime within the not-too-distant future again. Thankfully, we’re both pretty sure that we’ll always be best friends.

One of John Holton’s writing prompts for this week is what letter grade we’d give 2025 and why. I’m clueless about letter grades, so I’m going to rate the year on a scale of 1 to 10 as is the grading system here in the Netherlands. My rating would be a 5, which is just about below-average. Things that would improve the grade I’d give next year, are mostly related to my having more meaningful activities.

#WeekendCoffeeShare (December 6, 2025)

Posted on by Astrid

Hi everyone. Yesterday, I had tons of ideas on my mind on what to blog about but no motivation to actually write. Today, it’s the opposite. I’m joining in with #WeekendCoffeeShare even though I think I don’t have a lot to share today. I, as usual, had my last cup of coffee for the day about half an hour ago and am going to take a break from writing this post to have my 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. For most of the week, it was chilly but not rainy with daytime temps around 7°C. Today, the daytime high was 10°C but it’s been raining all day.

If we were having coffee, I’d tell you that I was pretty active for most of the week, both by walking and one time by cycling to the next town just to have a purpose for cycling. I didn’t need any groceries and we only ended up having a snack, but at least we weren’t aimlessly cycling around.

Today though, I spent the entire day indoors and still need to dance or whatever to reach my movement goal on my Apple Watch. My streak for whatever reason is still stuck on 33 days even though I’m moving each day and it’s been stuck on 33 days for a month or so.

If we were having coffee, then I’d tell you that I had many plans over the past week but haven’t accomplished a lot. On Monday and Tuesday, I did create some Christmas decorations out of polymer clay. Yesterday, I attempted to bake cookies. They turned out okay but not great and the process was frustrating. Nonetheless, it was better than lying in bed or staring into space, which is what I’ve been doing a lot lately.

If we were having coffee, I’d cheat a little with the coffee share being about the past week, since there was none last week. I’d share about the meeting I had with the behavior specialist early last week. It went well. First of all, like I said, the “one chance” rule about orienting new staff got ditched. My assigned staff, who is in training to become my side of the home’s support coordinator now too, E-mailed me the new orienting plan yesterday and it looks pretty good.

We also discussed my day schedule. In the future, I’ll hopefully get more set activities. In preparation for this, my assigned staff created instruction cards for some of my activities, so that I can hopefully do more activities regardless of which staff is assigned to me. She E-mailed these to me too and I gave some feedback.

If we were having coffee, lastly I’d share that I’ve been having lots of memories lately. And by “memories” I don’t mean good ones. Yesterday, for example, I remembered the team meeting for my current home I attended in the summer of 2023. One of the staff, when I told them that I can’t prepare my own lunch, replied: “But you lived independently, right?”. I immediately got defensive, because yes, I technically lived independently, but I shouldn’t have. Yesterday when I was talking about this with my wife, whom I’d first met when living on my own in 2007, she told me more about how bad it actually was. Until a few years ago, I believed that, while I couldn’t cope, this was mostly a mental thing. In other words, I was falling apart mentally but could really care for myself if I hadn’t been so scared. Well, no.

It is sad to realize that part of the reason why I need so much care is lack of training in childhood, adolescence and to a lesser degree early adulthood. I’m still struggling with my parents’ reasoning that they couldn’t have taught me because I was too strong-willed and just didn’t want to learn. It may’ve been true that I didn’t understand why I had to learn something that caused me frustration, but then isn’t it the parents’ job to guide the child through their frustration? I’m honestly still struggling with this.

The Good and the Bad: How I’d Rate My Days

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is rather relevant for me. In it, Sadje asks us how we’d rate our day. I’m not going to pick a specific day, but use this as an opportunity to write about the quality of my days and as such my quality of life.

When the Center for Consultation and Expertise consultant met with me last September, at one point she asked me how I’d rate my quality of life on a scale from 1 to 10. I find this difficult to say, as some days just about completely suck while others are okay or even somewhat joy-filled. I said that, on my absolutely awesomest days, I’d still rate them 7 out of 10 due to the fact that I experience pain and other forms of discomfort daily. Honestly though, I’m being optimistic when I do this. Even on my greatest days, after all, I hardly experience any noteworthy things. Like, I consider cooking or crafting to be enjoyable, but is my day really more than just about okay when I have done one of these?

This also signifies that my life could still very much be improved with just a few in my opinion relatively minor changes to my care. However, my staff see it differently, because they believe I can’t do a cooking or crafting activity when I’m in distress and, I believe, they also think I should be happy with just a walk and a dice game each day. Which, honestly, I’m not.

This makes me feel bad. In the words of my assigned staff at the intensive support home, when the staff follow my day schedule perfectly and I get all familiar staff, my day should be perfect. I replied, in my opinion truthfully, that no-one ever has a perfect day.

Now, to answer Sadje’s question about how I’d rate today: I’d probably rate it a 4 out of 10. I was rather distressed due to another incident yesterday. I also didn’t get to do anything other than go for two walks and play a game of Yatzy. I did, however, manage to do some reading and, as you can see, am writing this blog post. This signifies that, despite my distress, I’m still relatively able to function. My days could still be a lot worse. Besides, I had a cup of green tea in the evening. Oh wait, there I was being cynical, because green tea has become my symbol for how I actually feel about my life: when a cup of green tea is the highlight of my day or even week, that’s rather odd.

No Reason for Alarm, Apparently #SoCS

Posted on by Astrid

Hi everyone. I’m pretty frustrated right now. This is in part related to the usual struggles with my day schedule, ie. the fact that the only thing that’s clear about it is when I have support and when I’m supposed to be by myself. I’ve explained a zillion times that I need my activities to be more structured but the staff keep saying I can’t do any meaningful activities when I’m in distress. This may be partly true, in that polymer clay, baking and cooking are harder for me to do when I’m in distress, but when there’s no clarity about which activities I’ll do, the sheer magnitude of the list I have to choose from, overwhelms me before I can even decide whether I’m in good enough a mental state to do such an activity.

Another thing that’s been bothering me, are my physical symptoms. I’ve had horrible tremors for a few years already, but over the past year or so they’ve steadily gotten worse. My institution’s physician tells me to distract myself when it happens because it’s probably in part stress-related. However, I can barely operate my phone or computer when my hands are trembling and all the activities that I can do on my own that would at least in theory distract me, involve my iPhone or computer.

Yessterday, the tremors were so distressing and also my leg was in a constant state of tension. The tremors mainly affect my right side, while the muscle tension was on my left side. I have mild cerebral palsy affecting mainly my left side, so it’s kind of understandable that I’d experience spasming in that leg. However, there’s no known explanation for the tremors. Yes, they could be psychosomatic, but they could also be due to medication (one of my various psychiatric medications), some kind of long-term effect of my cerebral palsy, or any combination of these.

Knowing that my doctor doesn’t see a reason for alarm, is somewhat comforting. At least there’s no reason for me to believe I have a neurodegenerative disease. That doesn’t mean the thought doesn’t creep up on me at times though. However, even when I am able to realize that I’m not suffering from Parkinson’s (not that my tremors are at all similar to those someone with that disease would suffer from), the tremors are still debilitating.

On Monday, the staff are going to ask my GP’s nurse practitioner about the symptoms yet again. My intellectual disability physician tells me to distract myself, apparently believing my symptoms are psychosomatic. I’m pretty sure the nurse practitioner is going to say the same. However, if only those telling me my symptoms are all in my head and due to stress, could help me lessen that stress!

This post was written for #SoCS, for which the prompt today is “alarm”.

Care Needs

Posted on by Astrid

Last year, when I was first feeling like I was falling apart at my current care home, I wrote a list of my “needs” and E-mailed it to my assigned staff and support coordinator. I heavily watered down my wishes, thinking a need isn’t the same as a want and whatever comes out of a discussion of my needs, should be working for everybody involved, not just me. For example, I asked for more clarity on what activities I’d be doing each day and offered to use my whiteboard, but also said staff could just ask me what I thought I’d be doing and help me find a suitable activity; this last one was then put into my day schedule, ie. “Staff upon leaving asks Astrid what she’s going to do next”. Needless to say, this didn’t work for me, being autistic, at all, as it leaves the same amount of unstructured chaos as the old wording, which was simply that I had “alone time”, did.

Now, more than a year later and with the Center for Consultation and Expertise involved to help me and my staff improve my quality of life, I’ve written another list, but this time, it doesn’t offer solutions for my unmet needs; rather, it’s simply a list of problems I encounter at this home. In a way, I feel that being solution-focused should be more constructive, but then again this time I have the consultant to think up possible solutions to come closer to meeting my needs.

This post was written for the Six Sentence Story linky, for which the prompt this week is “need”.

September 2025 In My Kitchen

Posted on by Astrid

Hi everyone. It’s the last day of the month and I’m joining in with the In My Kitchen linky once again. Last month, I said I had a few plans for the first week of September and hoped the rest of the month would be active as far as cooking and baking went too. Well, it wasn’t really, but in addition to there still not being any clarity on when I can actually do a cooking/baking activity, it didn’t help that I was sick with probable COVID for most of the second half of the month. Anyway, let me share what I did accomplish.

First, on September 2, I cooked a pasta dish for this side of the home. I used roasted bell peppers, mushrooms, onions, garlic and chicken. I bought the roasted bell peppers in a pot, but later found out it’s relatively doable to make them yourself.

Then, later in the week, I made another bowl of overnight oats for myself. In the picture, you can see my special spoon. I usually don’t take pictures of my adaptive cutlery or other special tools, but actually why not?

Too bad I don’t think of creating simple breakfasts or lunches for myself more often, as I really wish I could contribute to my wellbeing that way. However, I also blame the day schedule, because I have “alone time” for thirty minutes before lunchtime and I cannot prepare food completely without help.

The next Saturday, September 6, I used my two-hour activity time slot in the afternoon to bake Biscoff blondies. My baking tray was a little larger than the recipe creator recommended, but the blondies turned out great regardless. Most of my fellow residents and staff had one with their evening coffee.


They were delicious but very filling. When, the next day, my spouse and I had two of them, neither of us cared for lunch even though I am usually almost insatiable.

The next week, I didn’t do anything in the kitchen. On the 18th, however, I celebrated two years at this care home, so I wanted to cook dinner again. That day, there was also the institution festival, so I decided to do the cooking on Wednesday the 17th. I made burgers for the entire home, both sides, so 20 residents plus staff.

Unfortunately, the home was short-staffed that day, so I initially offered to eat in the living room as to not need a one-on-one staff in my room. By this time, my respiratory symptoms were getting noticeable and I was easily overloaded. I managed to snap a picture of my plate when in the living room, but quickly decided to go back to my room.

Once in my room, I discovered the staff who I’d asked to do the final work, had forgotten to add the onions, bell peppers and mayo to my burgers. Thankfully, this got sorted and I took another picture of my burgers before consuming them.

The burgers, unfortunately, weren’t as good as I’d planned them to be. I mean, they couldn’t have been all that great, as they were freezer burgers, but I had totally wanted the dish to be more appealing.

Overall, the first half of the month was pretty fulfilling in the kitchen department, but the second half wasn’t. I’m hoping that, now that I’m almost over this respiratory bug, I can start preparing food again. Today, I did get a breakfast box full of yummy things in it to be used on Saturday, when I do the Walk on Sunshine for the Dutch cerebral palsy charity.

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.