Thankful Thursday (May 15, 2025): An Active and Creative Day

Posted on by Astrid

Hi everyone. Today is Thursday. I used to join in with (now angel) Brian’s Thankful Thursday occasionally a long time ago, but mostly pet bloggers joined in there. Recently, I discovered another Thankful Thursday blog hop. I’m joining in with both just because I can. 🙂

Today I had a really productive day in both the physical activity department and the creativity department.

In the morning, I went for a walk on institution grounds. Then, in the afternoon, my staff and I rode the side-by-side bike to the next town, where another staff lives who is currently on leave for family-related reasons. I went there to bring her a polymer cay “(op)kikker” (frog).

The staff invited us in for coffee, which was lovely. She really appreciated my little gift, which in turn made me grateful.

Later, I went for another walk on grounds and, in the evening, I crafted a unicorn out of polymer clay. My staff asked whether it was for yet another staff member, but I think I’m keeping this one myself. 😊

The staff, who had been doing all my support from 1PM on, also asked me whether I want to ride the side-by-side bike again tomorrow. Well, of course! I want to go to the market!

I am intensely grateful for a productive day. Here are some things I especially appreciated about today:


  • Coffee at the staff’s house.

  • Minimal pain even though I was quite physically active.

  • Being able to create again (I’ve been exceptionally crafty lately).

  • Excitement for tomorrow’s visit to the market.

  • And finally, the fact that I figured out how to use emojis on the computer! 🤣

#WeekendCoffeeShare (May 4, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare on Sunday, as yesterday, I had a busy day and was too tired to write.

Today’s the day we commemorate Dutch people who died in World War II (and in every war, conflict and maybe they now count terrorist attacks too since). Only 5% of Dutch people currently were alive during our liberation on May 5, 1945. I never was all that much of a May 4 and 5 follower, but I have over the past few years learned to be more mindful of the freedom and rights I and those I love have, since they are more and more being threatened. For this reason, I think I’m going to do the two minutes of silence at 8PM this year. I hope I’ll have finished my post by then. I’ve just had dinner, so no coffee for me, but I’d love to offer you a drink.

If we were having coffee, first I’d talk about the weather. On Wednesday, we had our first day when, at the national weather institute in De Bilt, the temperature climbed to above 25°C. On Thursday, here it even got to 28°C. I read that the first day of temps above 25°C usually doesn’t happen until mid-May. I appreciated it though. Today, the daytime temp didn’t get above 13°C.

If we were having coffee, then I’d tell you I’ve done a lot of walking again, as well as riding the side-by-side bike. My May challenge on my Apple Watch is to double my movement goal twice. I already did it once so far, so that should be ridiculously easy.

If we were having coffee, then I’d share that one of the sick staff whom I’d made the polymer clay frog for last week, let me know via her colleague that she was really happy with it. I had originally asked another staff to pass the frog for the other sick staff on to her. Then, on Tuesday, that staff said it may be nice for the two of us to pop by the sick staff’s house on Wednesday so that I could personally give the frog to her. I did ask the staff whose idea this was to text her colleague to ask her permission for us to stop by, since some care workers with good reason don’t want clients to know where they live. Now I for one never even look up my staff online and would certainly not violate their living space. The sick staff gave her permission so one of the side-by-side bike rides was to there. The staff’s kids were home too and one of them asked me where I live. I, being awkward with young kids that I am, originally mentioned the institution town and then said I lived at [staff’s name]’s work, only to realize that [staff’s name] is “Mommy” to the kid.

If we were having coffee, I’d share that the other side-by-side bike ride was to a market once again. I resisted the urge to buy something, as I’d already been to the supermarket on Monday and I reasoned even just strolling the market is a nice experience. Besides, we did have lunch at a fish diner.

If we were having coffee, then I’d share I’m still struggling with the temp worker situation and how much energy goes into explaining everything to them. Sometimes, I think staff get me, while at other times, it seems as though they’re absolutely clueless.

If we were having coffee, lastly I’d tell you that, yesterday, I went to Nijmegen for a cerebral palsy meeting again. It wasn’t the nationwide CP day. That had been in early April but was held in a city that’s a two-hour journey from here, so I hadn’t gone there. Nijmegen is about a 45-minute drive in good traffic. This meeting lasted three hours total and there was no theme. Rather, we gathered in a restaurant and had lunch and some drinks and just chatted. I have met many of the participants a few times before, but there were a few newcomers too. With one of them, I chatted almost the entire time, because we had so much in common. She recommended a few resources to me too.

After the meeting, I had decided to go to my best friend’s parents’ house (ack, “in-laws” is a lot shorter 😉). My best friend picked me up in Nijmegen and drove us there. My best friend’s sister was there for a bit too with her one-year-old son. I really don’t do well with kids, although this one is a lot less loud than my nieces.

I didn’t get back to the institution until 8PM yesterday and went to bed shortly after 10PM. I’m honestly still quite tired.

#WeekendCoffeeShare (April 27, 2025)

Posted on by Astrid

Hi everyone. I really wanted to write a #WeekendCoffeeShare post yesterday, but was dealing with neck and shoulder pain and was quite tired, so I lay in bed by 9:30PM. I originally intended this to be a quick lie-down and planned to write my post after my music pillow had auto-disconnected after thirty minutes. Well, before those thirty minutes were up, I set the pillow to keep playing until I either manually turned it off or its battery was empty. Guess what? I know for a fact that the latter happened sometime during the night, because the pillow was no longer connected when I woke up at 8:30AM, but I swear I didn’t hear its pretty loud sound indicating it needs charging. I slept like a log!

Anyway, all this to say I’m doing my coffee share on Sunday evening. I’ve just had my last cup of coffee for the day, but I can serve you some soda or tea. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. We’ve had some rain, some sunshine and some clouds. Today, the daytime temp was 19°C. We’re supposed to get almost summerlike temps of 23-24°C this coming week.

If we were having coffee, next I’d share that I’ve been crafting again. I made several polymer clay frogs for staff members who are recovering from surgery. The frog (Dutch: “kikker”) is sometimes used as a symbol for cheering someone up (“opkikker”). The first one took me over an hour to finish, but the second one was so much easier once I’d figured out how I wanted it. Here’s the second one.

If we were having coffee, then I’d tell you that I have a new assigned staff. One of my two assigned staff is on long-term leave for familial reasons and the other is a student. I had been a bit angry at the student for various reasons, among which her way of communicating the temp worker situation with me. The new one will be my assigned staff together with the student. I can get along with her pretty well.

If we were having coffee, finally I’d make use of the fact that I write my coffee share on Sunday to share that my spouse and I had an important discussion today after our outing to have lunch and shop. We have made up our minds that we’re getting divorced. We will continue to be best friends, but since there’s no sexual or romantic component to our relationship and we’re not living together nor intending on ever doing so again, it makes sense that we officially divorce. We have been having this on our minds for several months already, so the discussion, though hard, wasn’t altogether a surprise to me. We mostly need to work out how much my spouse owes me for my contribution to our mortgage, so that the house can be completely my best friend’s and no longer mine. I guess I will from now on refer to my spouse as my best friend to ease the transition for me.

It may seem like I’m not affected emotionally by this decision, but I am. I mean, I’ve mentioned a few times that my spouse and I will always be soulmates, but the fact is nothing is for certain. When we got married after all, it was to affirm our everlasting love to one another. Though our feelings for each other haven’t changed all that much since we first met in 2007, there’s this voice in me telling me this is the beginning of the end. I tell myself this is attachment anxiety talking. Whether it is or this fear is real, doesn’t really matter in the present moment though, as right now we’re still soulmates.

#WeekendCoffeeShare (April 19, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare tonight. It’s almost 11PM here, so definitely no more coffee for me. If you’d like to grab a drink, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. We finally got rain. Not as much as was originally thought and not nearly enough, but we got rain. The temperatures have also been lower, usually around 15°C. This is still warmer than normal, but I still yearn for 20°C.

If we were having coffee, then I’d tell you that, as a result of the rainy weather, I haven’t walked as much as I did in previous weeks. I still kept my perfect streak with respect to my movement goal on my Apple Watch, but didn’t meet my exercise goal everyday.

If we were having coffee, I’d share that I’ve finally been crafting again. I created a polymer clay bear holding a heart for my support coordinator, who is on maternity leave. Unfortunately, one of its ears fell off during baking, but thankfully I noticed it in time and was able to add a new ear.

I also made another attempt at creating a polymer clay trinket dish today, but failed once again.

If we were having coffee, I’d report that I had a meeting with the intellectual disability physician, who prescribes my psych meds, on Wednesday. The good news is that I’m allowed to further taper my antipsychotic. The bad news is no answers regarding my tremors. She thinks they may be related to my spastic cerebral palsy and this means that they can get worse when I’m stressed.

If we were having coffee, I’d tell you that I had a dietitian’s appt on Wednesday too. This went well. I’m staying in a sort of acceptable weight range and not having binge eating episodes or purging. My next appt will be in three months.

If we were having coffee, I’d moan about the temp worker situation once again. On Wednesday, when like I said I had two appointments, the staff wanted to orient a new “regular” temp worker to me. As soon as they told me, I told them that this wasn’t going to work out that day, but they kept telling me to see what’d come out of my doctor’s appt first and then we’d discuss it again. Well, no-one ever allowed for any discussion after the appt and, when the time came for the worker to be oriented, the staff doing the orienting kept pushing me in overt and covert ways to accept him. Like, the temp worker was constantly sneakily, without talking, being in my presence. This gave me a horribly unsafe feeling, because I, being blind, couldn’t be sure whether he was there or not.

The staff doing the orienting at one point seemed to show some understanding and told me she was going to talk it over with the other staff. She came back to tell me that it’d been agreed between my assigned staff, the support coordinator, behavior specialist and the team manager that, if I refused him now, I’d had my chance. She never told me who’d told her that when she was “talking it over”, so I assumed it was my assigned staff. I still refused the temp worker and to this day feel horrible about the whole situation. I mean, this whole agreement among the powers-that-be is showing that they believe I refuse staff for their one orientation moment just because I feel like it. Honestly, I still disagree with that whole thing about just one orientation moment and then they’re as regular as the regular staff who’ve worked here for years.

At one point, I went into the communal room and another staff, one of my “favorites”, was there. She asked me what was up and I explained that I had two appts that originally the staff didn’t think I could handle in one day and now they added this orientation thing to it too. The temp worker was present too and I told him it wasn’t that I didn’t like him, but he hadn’t even spoken a word to me during his previous shifts here and now he was creeping up on me. He apparently had been instructed to do so. The other staff understood and I actually talked a little to the temp worker.

Unfortunately, when I read my daily log notes for the past week today, I saw there wasn’t a single word about how I’d talked to him eventually. Neither was there anything about how I’d accepted the other temp worker (who’d had her orientation moment with me last week) for my activity on Tuesday, nor that I showed the new student staff my clay yesterday on his first shift here. This is relevant because it signifies that they’re still only reporting my challenging behavior and not the things I do accomplish in spite of the stress it gives me.

If we were having coffee, I would once again end on a positive note by sharing some small pleasures of the week. First was the BBQ on Thursday. It was good. Next up is a visit to the next town’s market yesterday. My spouse was a little surprised that I didn’t buy olives, as I usually buy those when going to the market. I did buy candy. I also went to the supermarket to buy some ingredients for my smoothies. We also went to that town’s coffee shop run by disabled people and had the most delicious caramel latte.

Speaking of which, I’d tell you that I’ve been having a new interest lately: coffee brewing. I’d really like to be able to create my own coffees. Still need to look into all the necessary supplies, but it should be fun.

#WeekendCoffeeShare (April 12, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s just past 4:30PM as I start writing my post, so I’m going to interrupt my writing for dinner. If you’d like a cup of coffee, you’re free to join me at 7PM, by which time I’ll probably have finished this post. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been sunny most of the week and we haven’t had rain in forever. Today, the temperature climbed to 22°C. This is my favorite type of weather, but I do realize that this high temps in April probably mean 40°C in July.

If we were having coffee, I’d tell you I once again managed to get in quite a lot of steps. On Monday, a staff and I went to the nearby lake, which I’d visited a few times with another staff before. While there, I did manage to take a few photos. My staff thought it’d be cool to take a photo of me at the bridge, but none of the photos she took were good enough. Here are a few photos that did turn out okay.



If we were having coffee, then I’d share that I’ve been taking some more photographs. On Sunday, I took some sunset shots. I really want to learn how to capture just the sunset rather than the buildings and trees too.


On Monday, I let my staff take my phone to the yard to snap a picture of an air balloon. I love how Be My Eyes describes the second photo with the bird on it.


If we were having coffee, next I’d tell you that I went out for lunch twice this week. On Wednesday, a staff and I went to Deventer to eat out at a restaurant staffed by people with developmental disabilities called Brownies ‘n’ Downies. There, I got the chicken burger with fries.

On Thursday, my mother-in-law came by for a visit. We drove to a pancake place a few towns away that has a play area for children too. Even though there weren’t many people in the restaurant, it was quite an overloading experience.

If we were having coffee, next I’d share that I’ve been hyperfixating on the idea of doing more cooking. I’ve been looking at smoothie recipes too, but I can’t seem to find cacao powder that isn’t super expensive anywhere in a brick-and-mortar supermarket.

If we were having coffee, I’d tell you that, this week, I’ve unfortunately still been struggling with temp workers being assigned to me. (Of course, my staff will say they’re “regular” temp workers.) Today, the support coordinator assigned me one of the temp workers for the entire morning under the guise of fewer switches. Well, it isn’t like he does this fewer switches thing when my trusted staff are available. IN the afternoon, the other temp worker had to have her one orientation moment with me. We went for a walk and then tried to play a game of dice, but she didn’t understand. The support coordinator told me that, if a staff doesn’t understand an activity, I can choose another activity which does suit them and another staff will explain the activity to them later. This frustrates me to no end.

If we were having coffee, I’d end on a positive note and share that, thankfully, the Center for Consultation and Expertise received our request to get involved. I’m now waiting for the behavior specialist to receive a call planning an orientation meeting. I really do hope I’ll be invited to that meeting.

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!

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

Hi everyone on this last Saturday of March. I’m joining #WeekendCoffeeShare today. It’s nearly 8PM as I write this, so no more coffee for me. However, a fellow client’s parents brought us cheese, sausage and maybe other little snacks to go with our soft drinks this evening. I’ll have apple and peach-flavored Dubbelfrisss as usual. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been mild most days with daytime temperatures around 15°C, though night-time temps have been around freezing. We had a little rain on Sunday I believe, but I think that was before I woke up. Honestly, I’m pretty sure nature could use some showers.

If we were having coffee, then I’d talk about my physical fitness routine. I am still going strong with my goal of a perfect month on my Apple Watch and, on Thursday, got in over 20K steps again.

If we were having coffee, then however I’d moan about my tremors. I’ve mentioned a couple of times that my right leg trembles horribly sometimes and, usually when it’s been happening, the rest of my body follows suit and starts twitching. Yesterday, it was really bad. My intellectual disability physician usually says it’s most likely influenced by stress, though both of us know that my medication (particularly my antipsychotic) could be causing it too.

With respect to my meds, I’ve often been reacting out of fear of becoming unmanageable and for this reason asking for a very slow taper. My physician has been constantly asking whether my life will become more difficult soon due to for instance more temp workers, because apparently that’d be a reason not to taper further for a while. Now I’ve decided that being manageable is not a reason to put my body through the effects of strong meds. Besides, yesterday I had an aggressive meltdown precisely because I couldn’t cope with the tremors anymore. Now thankfully on Monday my staff will contact the intellectual disability physician, my GP or both.

If we were having coffee, I’d also moan about my shoes. I’d worn one pair of orthopedic shoes for only a week last Thursday and they were already badly damaged. The physical therapist took a look at them and said she thought the orthopedic shoemaker might not have done the last repair properly. I’m not sure that’s the reason they get damaged so quickly. On Friday though, the physical therapist came by and took a video of my walking, which she is going to compare to a video she took about half a year ago. I’ll see her again next Friday and hope she’ll have some ideas.

If we were having coffee, I’d share that I’ve been having bad memories of my time in the mental hospital. Like I said above, the intellectual disability physician here constantly talks about the possibility of more temp workers as an excuse not to taper my medication. This was precisely why I was prescribed medication in the first place: I’d become severely irritable because of the large number of temp workers at the time and my psychologist was threatening me with seclusion if I continued to have meltdowns. Similarly, when on the locked ward, I was literally told I’d be locked up in the “quiet room” if I needed more care than they could provide. I realize rationally that this is institutional abuse, but I’ve internalized a lot of all the bullcrap institutions feed me.

If we were having coffee, I’d end on a somewhat positive note by sharing that the behavior specialist finally filled out the forms to get the Center for Consultation and Expertise involved on my case.

#WeekendCoffeeShare (March 22, 2025)

Posted on by Astrid

Hi everyone. It’s nearly 10PM here. I really wanted to write today but, for reasons I’ll explain in a bit, didn’t get to it. I’m joining #WeekendCoffeeShare. No more drinks for me except maybe some water, but if you’d like to, feel free to grab your favorite beverage.

If we were having coffee, first I’d talk about the weather. It’s been absolutely delightful. Yesterday, the daytime temperature was as high as 22°C and I wore a skirt. I usually don’t wear skirts in colder weather because I don’t like wearing tights. It felt so good to be able to wear a skirt. I also loved the sunshine.

If we were having coffee, then I’d tell you that I got in a lot of walking again over the past week. I really liked being active.

If we were having coffee, next, however, I’d share that I’ve been struggling badly again. I had an unannounced visit from the behavior specialist on Monday. My initial question was whether any progress had been made in involving the Center for Consultation and Expertise on my care. The answer to that was “No” and the behavior specialist didn’t offer any clarity on when she was going to get the ball rolling. My feeling is it’ll be 2034 by the time they get involved.

She did, however, have a lot of new so-called “agreements” (I’d call them executive orders) on my care. She pretty much ignored my input and there’s nothing about the things I said in the bullet points my assigned staff wrote in my records. Some of the new rules include:


  • New staff get only one chance to be oriented to me for each task (activity, morning routine, meal) and then they’re supposed to be “regulars” and can be assigned to me whenever the staff want. If I am not accepting them for their orientation time, it’s a missed opportunity on my part. I didn’t find out about that last bit until today.

  • I can be physically dragged to my room if I’m having a meltdown in the communal areas.

  • Staff will no longer be forced to rotate almost each support moment. Sounds good and it was what I wanted, but now they’re supposed to decide at the end of each moment who will come for my next moment, giving me only half an hour to adjust.

If we were having coffee, I’d tell you that the staff tried to orient three new “regular temp workers” (that’s an oxymoron in my opinion) to me within the next three days. I didn’t accept two of them. One because it was the evening after the meeting with my behavior specialist and a relatively new staff would be orienting her colleague. The other, I never said I wasn’t accepting but I was in a lot of distress and somehow my assigned staff made up that it was because of the new one.

The third one, I accepted without protest for my morning routine even though I later found out staff are supposedly first oriented to an activity. The staff being oriented kept asking me whether I’d explain things to her if she forgot. Well, actually, no, since I’m pretty easily overloaded by lots of questions. “She does pay attention, don’t worry,” the regular staff told me. Well, I do worry.

Unfortunately, I got a lot of negativity in my records for my behavior and yet there wasn’t the slightest acknowledgement of the fact that I’d accepted the third new staff without protest. That feels intensely unfair to me.

If we were having coffee, I’d share that the support coordinator did, for some reason probably only he knows, decide the new “regular temp workers” can’t be assigned to me yet even though by the behavior specialist’s rules, I’ve had my chance with all three. I am grateful for this, although I do understand I’ll need to accept them soon enough. That, hopefully, will go okay.

If we were having coffee, lastly I’d share that I’ve been writing up positives and negatives of the day each day for a few weeks now. Looking over these, it shows that I do appreciate small joys.

For example, there’s a new sensory room on the other side of the home and I’ve been eager to use it. I’ve also donated some stuffed animals and cushions to it.

March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

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.