#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.

How I Coped With Losing My “Job”

Posted on by Astrid

Hi everyone. This week, one of the prompts for Writer’s Workshop is to write an essay titled “How I coped with losing my job”. I don’t do well writing fictional essays and have never had a “real” job, in the sense of a paid position or even volunteer work. I did, however, once “lose my job”, in that I got told the day center I went to couldn’t keep me there anymore.

This happened sometime in January of 2018 at my first day center with my current care agency. They had had me there for eight months, in two different groups, but when I was struggling to cope at the second group, they could no longer serve me or so they said.

I felt really distressed about this. The most frustrating aspect was the fact that they blamed me for no longer being suited to the center, while in reality, three new clients had been accepted into my group and no additional staff had been hired. I remember the reason they said it was me being the problem, not the new clients, was the fact that I’d been having meltdowns shortly before they arrived. Now I know that any anticipated change will cause me distress and that doesn’t mean I’m just a problem client. However, in hindsight, I’m pretty sure they wanted me gone sooner rather than later all along, for the simple reason that I don’t have an intellectual disability.

Thankfully, I wasn’t told to leave on the spot, but got time to find a new place. I initially had no clue how to, but did remember that, in 2010, I had been helped by the Center for Consultation and Expertise (CCE). I told the staff that I wanted to involve them again.

This was a bit of a hassle, as my community psychiatric nurse from the mental health agency said I’m far too high-functioning for the CCE. I applied nonetheless and got an orientation meeting in May of 2018.

In the end, I didn’t need the CCE for finding a new day center, but the consultation was what led me to accept that living independently with my partner wasn’t working and I needed long-term care.

I did feel intensely frustrated, like I said, at being “fired” from this day center. However, in the end, I don’t blame the staff, who were just powerless in the face of my challenging behavior. I think the manager, who didn’t look beyond my psychiatric diagnoses, is partly responsible. So was the psychologist from the psychiatric hospital, who more or less made the manager accept me on partly false premises.

A Good Meeting With My Support Coordinator and Behavior Specialist

Posted on by Astrid

Hi everyone. I really want to write more about what’s on my mind and, after a few months of struggling, I finally have some good news. I just saw in my private journal in the Day One app that it was a year ago when I heard my moving date to this home. I moved two weeks later. How time flies! After a meeting with the behavior specialist and my support coordinator on Monday, I can safely say that, if the things we agreed on will actually happen, I’m going to have a pretty good life here.

I had requested this meeting a few weeks ago and it was originally scheduled for the 17th of September, but thankfully there was time to do it on Monday. We mostly discussed a document I’d written sometime in early August detailing my care needs (as I see them). Thankfully, most were things the behavior specialist and support coordinator could agree with me on. Here are the things we’ve decided.

1. Less staff switches and more clarity about who will be supporting me during the day. Currently, it’s only clear who will do my two-hour-long activity in the afternoon and the rest is guesswork. I wrote that I can’t help trying to figure out in my head who will be supporting me for which of my eight or so support moments during the day. The support coordinator and behavior specialist came up with a schedule for who will support me when based on what times each staff comes on. This, and all other agreements, won’t take effect until sometime in late October.

Staff will also get designated time to write up their daily notes about me. I also requested staff do a short handover (like, two minutes on how I’m generally doing) when they switch. I can’t remember what was agreed upon about this, but it should be relatively easy with the fact that I’ll have mostly no more than four staff supporting me over the course of the day.

2. My day schedule for weekends will be changed to be the same as my weekday schedule. Currently, there’s a fifteen to thirty-minute time difference, which is confusing. I originally proposed to remove an activity time slot from my one-on-one on weekends, so to make it very different, but that didn’t seem to be a good idea. I honestly mostly said this to stick to my allocated one-on-one hours. After all, the other support coordinator used to be really strict on these.

They’re going to try to get me slightly longer staff support in the evenings. Currently after 7:15PM, I’m supposed to be by myself except for a few two-minute check-ins.

They were also very clear that appointments with the physical therapist, play therapy etc. are not dependent on my day schedule. What I mean is, if they happen to be during a support moment, fine, but if the therapist’s most suitable moment is outside of my one-on-one, that doesn’t mean I’ll need to compensate or go to therapy without staff support. The other support coordinator had been shoving my day schedule into the physical therapist’s face before she could even pull out her calendar, which led me to say that PT isn’t day activities so shouldn’t be during my activity time slot and I’ll go alone if this means no support.

Finally, it was agreed upon that, if I come out of my unsupported time in distress, staff will help me and this does not need to be compensated for (unless it takes so long that staff’s other tasks will suffer).

3. The support coordinator will be advocating for there to be a trusted staff for me at least part of the day most days. The other support coordinator is the home’s planner and he’s been really tough to get along with, so we’ll see where this goes.

The support coordinator did say that she and my assigned staff will try to see me regularly too. I can also ask one of my trusted staff whether I can talk with them (support coordinator or assigned staff) about something.

4. I asked for recognition of how far I’ve come over the years with respect to for instance accepting temp workers, accepting unexpected staff changes, etc. This was quite a hard one to explain, but it eventually made sense.

5. I asked to no longer be let out the door when in distress. I agreed to be physically restrained and led to my room if necessary too. This is going to take effect sometime next week, since I felt really let down when the staff opened the door for me.

I later realized that this is really already in my crisis plan, but it contradicts the support agreement that I’m free to leave the home as I please and as such staff unlock the door when I want to leave. How this will all be put down on paper, is not fully clear with me, but I’m confident it will work out.

Overall, I’m really pleased with the outcome of this meeting. The only problem I can foresee is the other support coordinator, who is really coordinator for my side of the home, discarding everything as unworkable.

Vignettes About Unicorns

Posted on by Astrid

Hi everyone. Today I’m joining Writer’s Workshop. One of the prompts is to share at least five moments of your life (not events, but merely vignettes) that are somehow related. I, for some reason, was immediately drawn to the theme of unicorns. Let’s see what I can come up with.

1. I remember having a unicorn My Little Pony figurine as a child. In fact, that’s a lie, as I think it was my sister’s, but I loved her anyway. In my memory, she was light purple, but I could’ve misremembered that, since my favorite color is lilac.

2. Last October (I think), I got a unicorn soft toy from my spouse as a thank-you gift for my support throughout our relationship and particularly over the past several months.

3. The other two unicorn soft toys on my bed, I bought at the fall fair here on institution grounds last October too.

4. Which reminds me, I have a lonely unicorn soft toy sitting in the soft toy cabinet. I got that one for Christmas at the last day center I attended while living with my spouse.

5. Oh wait, no, I have another unicorn soft toy in the cabinet. I got that one when leaving the care facility in Raalte for the intensive support home. Oh, how I miss being in Raalte still.

6. Now enough with the soft toys. The first unicorn I created, in July of 2021, I did entirely from a YouTube tutorial. I gave it to my spouse, who probably still has it.

7. I remember crafting my first unicorn at the intensive support home with my assigned staff. It didn’t turn out as good as I’d liked, but it was okay.

8. I gifted her my best unicorn I created while there when I left. Too bad she ignores me now…

9. When I left the intensive support home, I gifted each of my fellow residents a small cutter-created polymer clay unicorn.

10. I used for it a cutter I’d gotten for my birthday last year from my parents. My spouse had also gifted me unicorn-themed cutters at some point, which I originally intended to use.

11. I read my first unicorn-themed book a few years ago. That is, I probably read some in childhood too but not sure since they weren’t as popular as they are now. The book was a short picture book called First Day of Unicorn School.

12. My current unicorn-related read is the second book in the Unicorn Academy series by Julie Sykes. Oh wait, that’s not exactly a memory I’m sharing…

13. I can’t remember when I started calling my spouse “head unicorn catcher”. The reason is the fact that my spouse’s truck route is named after a city which has the unicorn as its symbol. Oh wait, that wasn’t really a memory either.

But I got to thirteen. So I’m allowed to share this post with Thursday Thirteen too. So if my post doesn’t meet the criteria for Writer’s Workshop, at least it meets the criteria for that.

Reminders When I’m Feeling Like Life Is Pointless

Posted on by Astrid

Hi everyone. Like I said on Saturday, I’ve been struggling lately. It’s been so bad that I’ve actually been considering talking to my doctor about options for medication. I mean, I’ve been tapering my antipsychotic aripiprazole (Abilify), which is sometimes used as adjuvant medication to treat depression. However, I honestly struggled with mild depression already before starting my taper.

That being said, I really need to remind myself of the things I have in life. For this reason, I started a list of positives and negatives for each day that I’ll send to my second assigned staff weekly. She is more socially adept and empathetic than my other assigned staff, which is why I have her to discuss my personal issues with. Anyway, I allow myself to list the negatives too, which sometimes outweigh the positives, but the last few days, the positives have outnumbered the negatives.

For instance, today I had as a positive the fact that I finished a pair of polymer clay earrings. Okay, I haven’t yet seen how they turned out, but who cares? The process is more important than the outcome. I also listed as a positive the fact that I had a good online meeting with the regional branch of CP Netherlands, the Dutch cerebral palsy alliance.

I listed one negative, ie. the fact that I got slightly stressed out when my male assigned staff asked me some questions about swimming. I’m supposed to go swimming in a group on Thursdays but this hasn’t happened yet due to staffing issues. I have tried to jump through all kinds of hoops to accommodate the staff and felt like I was being pushed around. Thankfully, tomorrow (Wednesday), it turns out, I’m allowed to try out swimming with my fellow clients.

I think that, when I’m in a downward spiral and particularly when I feel like my world is becoming smaller and smaller and life is pointless, I need to remind myself that there are still lots of things I can do even though I’m at home a lot. I could read, watch YouTube videos, blog, scroll on social media, do all kinds of crafts. Honestly, in fact, when a staff is entertaining, even a dice game can be enjoyable. And the entertaining factor is a two-way street. After all, I noticed this with a staff yesterday with whom I hadn’t gotten along a few weeks back. He was about as unengaging as could be and left 15 minutes early, but then again I treated him badly first by refusing to explain my routine because “it’s not my job to train temp workers”. It isn’t, technically speaking, but I could’ve been kinder. Yesterday, he actually made our game of Yahtzee fun.

I do still think my world could be enriched. I also feel this isn’t a cure-all for my depressed mood. Some of it comes down to grief, too. Grief for having lost the support I had in late 2021, when I was 95% sure I wanted to stay in Raalte. “Make that 98% please,” the manager said. Not even half a year later, it turned out, either she or some other people involved there were glad I was asking to leave. That angers and saddens me to this day, but wallowing in these feelings won’t help. Involving myself in positive activities might.

I’m joining #WWWhimsy.