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.

#WeekendCoffeeShare (July 5, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. I just had my last cup of coffee for the day and probably won’t finish this post before I have my evening soft drink, but I might be able to get my staff to prepare me a cup of green tea at around 9PM. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Oh my, has it been hot! On Tuesday and Wednesday, we had daytime temps of 36°C. The weather has been more bearable later in the week and tomorrow, we’re finally supposed to get rain. We were supposed to get a few thunderstorms on Thursday too, but thankfully not.

If we were having coffee, then I’d tell you that I did manage to meet my movement goal on my Apple Watch each day this week. Not by walking on those hot days, of course. That is, on Wednesday evening I did go for a short walk. On Tuesday, I stayed indoors all day and got my exercise by dancing. I did walk on every other day.

If we were having coffee, I’d share that I talked about exercise with the movement therapist on Wednesday. Next week, she’s going to come up with some exercises that I can do on my fitness mat.

If we were having coffee, then I’d tell you that my best friend and I went out for dinner yesterday at the Thai restaurant we took my parents to for my birthday two years ago. I had chicken with black pepper, garlic and vegetables and of course rice that was enough to feed a family of four. I loved the food, but I did feel pretty overloaded afterwards.

If we were having coffee, next I’d moan about my day schedule. It’s still frustratingly unclear. This got me to have an outburst on Wednesday, because of course it was too hot to go for a walk and the staff assigned to me couldn’t do dice games. It all boils down to the fact that I feel overwhelmed by all the activity options and then I end up doing nothing. I’m really unsure as to how to solve this issue and sometimes I feel like a nagger.

If we were having coffee, finally I’d tell you that, thankfully, I’m still able to appreciate the little things in life. Like the green tea I mentioned above. On Wednesday, I was talking to my best friend, who was having a cup of tea at the time, and this got me thinking that even though it was 9PM, no-one said I couldn’t at least ask for a cup of tea myself. I prefer plain green tea, so I went to the living room and asked the staff for a cup of green tea. She was okay with this, so the next day, when she worked again, I decided to ask her for green tea at 9PM again. I’m seeing this as a treat. Same with my extra cup of coffee this morning when I woke up. Of course, people living independently might take their tea or coffee at the time they wish for it for granted, but I don’t.

#WeekendCoffeeShare (June 21, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare this evening. It’s 5:40PM as I type this. I’d advise you to drink lots of water today, as it’s hot outside, but if you’d like a coffee, I’ll gladly serve you one. I also just heard that one of the staff ordered a dozen bottles of diet coke (and I mean the 1.5l bottles, not single-serving bottles), so if you’d like a coke, that’s okay too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. Did I say it’s hot? Yes, I did. The daytime high today was 30°C. That plus lots of sunshine and poor air quality means I may go outside for a bit at 9PM or so, but not now. The rest of the week, the daytime temps have been lower, but I’ve been able to wear short sleeves each day.

Tomorrow is supposed to be another hot day here in the eastern part of the country, but after that, we’re getting some rain and lower temps (though still above 20°C). I’m already looking at the weather forecast for next Saturday, as then my sister and her family will be visiting me for my birthday. Let’s hope it won’t be too hot, as then my sister and her kids will most likely be cranky.

If we were having coffee, next I’d share that I did meet my movement goal on my Apple Watch each day this week again. That is, each day except for today so far, but I’m pretty sure I’ll meet it today too despite only one walk.

If we were having coffee, then I’d tell you that a staff handed me some shorts, shirts and a few other clothing items that she no longer wears. We did have to throw a few things away that I suspected would be worn out soon or damaged in the washing machine. Overall though, I’m very happy with everything she gave me.

If we were having coffee, I’d also tell you that I fell last Sunday. I had just finished a polymer clay project and was walking out of the bathroom after having washed my hands when I stumbled over an open drawer of my nightstand and fell. I apparently fell backwards, hitting my head quite hard on the floor. The staff said I was responsive right away, though I have a small memory gap. After a while, I got a major headache and my neck also started hurting.

My father broke his neck when he was young and didn’t find out until several days later. This thought crept up on me constantly and, not knowing that if I had broken or seriously damaged my neck, I would’ve felt severe pain right away not a while later, I felt quite anxious. My staff wasn’t able to reassure me either. Thankfully, my GP’s nurse practitioner, who came by on Friday to check on me, was. I now am to take paracetamol four times daily for the next few days to lessen the pain, in hopes that I’ll move my neck more and it won’t stay stiff. I’m glad my anxiety is also less, because that too was keeping me from moving my head.

If we were having coffee, lastly I’d share that, though I have a zillion ideas for what to do in the crafting, physical activity and writing departments, none of these seem to materialize. This frustrates me to no end. I really hope there’s a way for me to get some more structure in my activities without it becoming too compulsive.

Devotion to Polymer Clay

Posted on by Astrid

Hi everyone. Today I’m joining John Holton’s Writer’s Workshop. I’m choosing to write on the prompt about devoting your life to art. What type of art would I devote my life to?

The question here is, are we to choose just one particular form of art that we’d devote our entire life to, or are we allowed to pick more than one form? After all, many art forms are interconnected and I would not enjoy one without the other.

For instance, I would probably not enjoy polymer clay as much if I didn’t take photos of my work and didn’t write about the craft on here. Also, if I make jewelry out of polymer clay or use polymer clay beads in a necklace or bracelet, that’s basically combining two crafts.

So, let me say I cannot choose just one art form, because, though my photographs aren’t all that artistic, I’d still have to choose between polymer clay and writing. I flat out refuse.

After all, though writing comes easiest to me, polymer clay is what brings me the most joy. I just love the fact that, even though I’m now totally blind, I still have some insight into colors. I also still, four years into the craft, love creating unicorns.

I made three unicorns in the past week. The latest, I haven’t baked yet because I just made it this evening. The other two I made late last week. One is probably going to be a gift to a staff who gave birth last week. I loved working with the two colors for the mane, tail and horn, but its horn is a little crooked.

The other one, which I myself like best, is for me. After all, you can never have too many unicorns.

A few years ago, I talked to my then staff about possibly creating unicorns to go into the care agency’s shop. That idea never materialized, but I’ve brought it up a few more times. I’d just love to have polymer clay as my “job”. Here, I chose anyway. And I also wrote on another prompt, because creating the unicorns is the main thing that made me smile recently.

March 2025 In My Kitchen

Posted on by Astrid

Hi everyone. I enjoyed the linky last month, so am participating in In My Kitchen again.

As regular readers of my blog will know, I don’t have my own kitchen because I live in an institution. We also usually get our dinners from a meal delivery service. Last month, I shared that I was hoping to do some more cooking in March. Guess what? I cooked dinner for myself and my fellow residents twice this past month.

First, on March 5, I cooked pasta with pesto, chicken and broccoli. My spouse joked after seeing the picture that the pine nuts were on sale. In reality, I hadn’t originally planned to sprinkle the pasta with pine nuts but my staff had loads of them, originally intended for her parrots, who don’t even really like them or that’s what she said.

A little over a week later, I cooked pasta again. This time, I included shrimp, lots of garlic, peppers, a few packages of mixed veg and, because according to me this was too little for ten people, a few bell peppers too. I needn’t have worried, because everyone had enough to eat and there were still a few servings left to go in the freezer.

I also made a few smoothies using my blender. Unfortunately, last week I found out that, somehow, the ring-shaped thingy that keeps the blades in place, had broken. I erroneously thought this meant the entire blender should be discarded. Yesterday, my spouse and I went to the electronics store and bought a new one, actually I believe it’s the same one I had. I also recently learned that I can actually make more smoothie with my blender than I used to think. After all, when you fill up the blender with fruit, veg or whatever you’re blending, you shouldn’t fill it up fully. Until recently, I however thought that this means you’re left with only, say, half the blender’s content of smoothie and that’s it. I never realized that you can add more food once the blender has finished blending some of its contents. Stupid, I know, but oh well.

In other kitchen-related news, my assigned staff has told me that she’ll add a weekly cooking activity into my day schedule. I don’t yet know when this is going to happen, but I did hear that my one-on-one support has been approved until the end of 2026 again. Yay!

Share Our Life (March 2025): An Average Day

Posted on by Astrid

Hi everyone! Today I’m joining Share Our Life, a linky with a monthly theme. This month, it’s to describe an average day in your life. Unfortunately, taking pictures is not part of my average day. I really want to change that, but for now, just text will have to do. I didn’t pick a specific day to describe.

I usually wake up at around 7:30AM when the staff are helping the resident in the room next to me with her morning routine. Since my first support moment isn’t until 8:15AM, I usually have a little snooze.

8:15AM is when my staff come to wake me up and help me with my morning routine. I hate showering, so don’t do it each day. I get dressed and have breakfast – usually quark with muesli and blueberries. My morning routine, including breakfast, can take up to an hour.

At 9:15AM, I’ll usually lie back in bed for a little slumber while listening to music on my music pillow.

My first activity time slot starts at 10AM. I sometimes extend my lie-in until 10:15 or 10:30AM. I start my activity time slot with coffee and then I’ll usually either play a card or dice game or go for a walk.

By 11:30AM, my staff leave to prepare my lunch. I usually eat two slices of bread with peanut butter and a cracker with speculoos (Biscoff). I also consume a serving of veg with my lunch. My lunchtime is at noon.

By 12:15PM, I’m done eating and will be on my phone for a bit, reading the news or texting or calling my spouse, who is then usually taking a break.

My two-hour activity time slot starts at 12:45PM. This time slot was originally intended for more time-consuming activities such as a bigger polymer clay project, going out to the nearby town, etc. Occasionally, I’ll use this time slot for cooking dinner for myself and my fellow residents. Often though, I can be found walking grounds with my staff. I’ll end my activity time slot with coffee, although I might also have a cuppa by 1:45PM already.

My staff go into handover at 2:45PM and I’ll most days use up the 45 minutes until my next supported moment with some online activities. By the way, handover doesn’t take 45 minutes, but it’s not like I need one-on-one all of the time.

During my 3:30PM activity time slot, which lasts an hour, I commonly play a dice game. I sometimes also go for another walk. I have unsupported time again for 30 minutes after this while my staff help the other clients with their dinner. My dinner is at 5PM. I am a rather fast eater, so am frequently finished by 5:15PM. My staff have their break at 5:30PM.

At 6PM, my final activity moment for the day starts. I have an activity list, from which I can choose what we’re going to do. What we’ll do, is too often related to the staff supporting me. I really want to change this, but it’s hard.

I’ll have my final coffee at 7PM and then have unsupported time again until it’s time for my late evening meds at 8PM. I’ll most commonly use this time and the rest of the evening for blog-related activities.

Like I’ve shared many times, I usually have Dubbelfrisss in apple-peach flavor with my evening meds. I also will eat a serving of fruit. Then I’ll be told which staff will be in the home the next day. Some days, I’ll hang out in the living room for some time then, while at other times, like today, I’ll head straight back to my room and go online. I used to be phoning my spouse a lot late in the evening too, but now we’ll often talk at other times.

At 8:45PM, I’ll sometimes have a little snack. Then I’ll go online again until my staff come to supervise me brushing my teeth and to close my door to the yard at 9:30PM. After that, the staff will leave the home and I’m supposed to rely on the night staff in the main institution building for support. My fellow residents all go to bed before then, but I’m allowed to stay up. I’m a true night owl, so most days it’ll have been past 11PM before I’m in bed.

All this sounds incredibly boring and unproductive. I really want to put my unsupported time to better use, because currently most of the time I just end up scrolling.

February 2025 In My Kitchen

Posted on by Astrid

Hi everyone! A while ago, I discovered Sherry’s In My Kitchen linky. As most of you know, I don’t have a kitchen, but of course my care home does. I’m using this opportunity to share some thoughts about the foods I’ve prepared and/or consumed lately. Do polymer clay-related musings count too, since polymer clay is cured in an oven? Just kidding (a bit).

Last week, like I think I shared, I visited the next town’s market and bought olives, fried chicken and peppers. I also bought arugula at the supermarket. My staff whipped up the most delicious salad out of these and some carrots that were in our fridge. I had some the next day as well. Sadly, I was under the impression that the staff had used up all peppers, only to be told yesterday that there were still peppers in the fridge. Those had by then gone bad.

I also bought blueberries and have been adding those to my muesli and quark that I eat for breakfast almost each day.

I’ve also been making smoothies lately. For example, a few weeks ago, we had lots of bananas that were on the ripe side, so we chose to whip up a smoothie with them. My current blender has only a 1 liter container, so at first I used to make only about four cups of smoothie and share them with my fellow residents who also stay up later.

Yesterday, a staff offered to help me prepare a smoothie for the entire home that we could use in place of our evening soft drink. Looking back, creating more smoothie than my container can hold is as simple as pouring the smoothie into cups then reloading the blender. The staff peeled and cored the apples and pears, something I think I could’ve helped with too, but oh well. I chose to add cinnamon, cardamom and clove, as well as soy milk as a liquid. The smoothie was absolutely delicious!

For the upcoming month, I’m really hoping to do more in the care home kitchen. Honestly, I feel I could easily be whipping up my own salads and do more in the smoothie-making process. I’ve also been looking at treats and even main meals to cook. I mean, I have the two-hour supported activity time slot in the afternoon and this often is currently spent on nothing more than a walk. I have been nagging my staff for a more structured activity schedule for months, but this seems to be rather difficult. One can always hope though.