#WeekendCoffeeShare (March 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM as I start typing this, so I’ve had my last cup of coffee for the day and will take a break from writing this post at around 8PM to have my evening fizzy drink. Actually, Dubbelfrisss, which I generally have, isn’t very fizzy, being that it is only slightly carbonated. That’s a good thing, since I can’t stand actual fizzy drinks. Anyway, 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 incredibly warm all week with daytime highs above 15°C each day. Today we even had a daytime high of 18°C. It’s been sunny for most of the week too. I know, climate change and all and we’re probably getting summertime temps above 30°C, but for now I love this weather.

If we were having coffee, I’d also proudly announce that I broke my exercise record on my Apple Watch again. Yesterday, I got in 190 exercise minutes, both by walking and by biking to Deventer.

If we were having coffee, I’d tell you that I rode the side-by-side bike to Deventer twice this week, both times looking for new clothes. On Tuesday, I bought a few jeans and a blouse. Yesterday, I initially wanted to buy a blouse and a shirt, but didn’t end up buying those when I found out they were rather light-colored. So is one of the jeans I bought on Tuesday, so now I’m afraid I’ve stained it beyond cleaning already. This once happened with a pair of off white pants I bought with a staff several years ago and my wife said wise staff won’t let me wear light-colored clothes because of the risk of me spilling coffee over them. I told the staff I went clothes shopping this yesterday and she said I could put a napkin on my lap to prevent this. The thing is, I only need to forget this once for clothes to be ruined by coffee stains. I’m now unsure as to whether I was wise even having gone clothes shopping with her.

If we were having coffee, I’d tell you I’ve been playing around with AI a bit. Last Saturday, when I shared the Warmies unicorn soft toy on here, I tried to take several more pictures, but none were better than the one I’d posted. Then I decided to ask CoPilot to edit the image to make the unicorn stand out more. I don’t know whether the original picture was recognizable as a unicorn, but I loved how CoPilot recreated it.

For reference, here’s the original photo I took.

If we were having coffee, lastly I’d share that I finally saw my new, activity-based day schedule, to be taking effect on April 1. To be honest, it’s a bit disappointing, in that my assigned staff just added the activities I’d proposed to it and that’s it. How this could take months of “thinking” to take effect, I don’t know. On top of that, the new schedule will take effect on the same day the home will start having a new staffing schedule too. My support coordinator told me there’s no shortening of hours, but at an important time for me, there is. You see, when I proposed my activity-based day schedule, I’d added my daily cup of tea at around 9PM into it, both to make the schedule more aligned with reality and because that cup of tea truly helps me make it through the night without support. Unfortunately, it’s not in my new day schedule and staffing will be cut at 9PM too. I for clarity’s sake don’t need one-on-one attention then, but it does help when staff keep an eye on me. My support coordinator, who told me about the staffing changes and new day schedule, said I can’t expect everyone else to be in bed by 8:30PM because I want my cup of tea and there’s not enough staff to keep in touch with me and help the others to bed at the same time. No, I can’t, but it’s not me who cut those hours. Several staff have told me I’ll have to wait and see how things go and no-one is prohibiting me from having a cup of tea, but then why can’t it be in my day schedule?

#WeekendCoffeeShare (February 27, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s just past 5:30PM as I start typing this blog post, so I’ll still have my evening coffee at 7PM. If you’d like to grab a drink too, feel free to get yourself a cup or glass of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been crazy! Crazy good in my opinion, in that yesterday and on Wednesday, the daytime temp climbed to 17°C. Today we had a daytime high of 15°C and more wind. It’s raining now too, which I’m told is necessary, as the winter has been horribly dry over here.

If we were having coffee, then I’d tell you that I reached my movement goal on my Apple Watch each day this week. Yesterday and on Wednesday, I even doubled it. I also broke my exercise minutes record yesterday. I mostly went for walks, but on Tuesday, I also rode the side-by-side bike to Deventer to get some shopping done. City representatives were having a survey about the bike-friendliness of the city. I accepted the flyer because the person handing it out was making a fuss of how special the side-by-side bike is. And also, we got a free serving of “poffertjes”. Note to self: actually do that survey!

On Wednesday I also rode the side-by-side bike to the nearby lakeshore to have a cup of coffee and a piece of caramel pie. No pictures this time, but it’s the same caramel pie I had a few times last year too. I must say, this place is pretty budget-friendly, in that I only paid €6.95.

If we were having coffee, I’d provide an update on my medical situation. I had bloodwork done on Monday because of increasing IBS symptoms. Thankfully, nothing came out of it. I’m okay just dealing with the pain and discomfort, knowing that at least it’s not something more serious.

This is not necessarily the case with respect to my involuntary movements and tremors. Like I shared on Saturday, my doctor says they’ll only get worse because I’m getting older. I call bullshit to that, in that, while literally everyone gets older, it’s not like I’m elderly at 39. My wife looked up tardive dyskinesia (TD) as a result of medications, which my doctor didn’t mention specifically but then again she never mentions anything specifically. If I have this, there’s some medication for it in the works, but it isn’t available in Europe yet.

My wife at one point mentioned that this medication is prescribed to people with Huntington’s Disease too. I know there are similarities between tardive dyskinesia and Huntington’s, but I didn’t know how far these go. I finally joined a TD group on Facebook and asked. Thankfully, TD is not a death sentence and it may not even progress. That doesn’t mean I’m no longer distressed, because, quite frankly, unlike my IBS symptoms, the involuntary movements significantly impair me.

If we were having coffee, I’d tell you I decreased my antipsychotic again starting today. I’m now on 9mg of aripiprazole. I’d expected to get one 5mg tablet and four 1mg tablets, but for some stupid reason I got nine 1mg tablets. This means I can now just about barely swallow all of my pills at once.

If we were having coffee, finally I’d share that the talk with my support coordinator on Sunday was a bit disappointing. There are several things about my care that frustrate me and she told me it’ll take months before there’ll be any significant changes. Thankfully, she didn’t mean my day schedule. That might change a little sooner. She also scheduled a meeting with the behavior specialist who’s now responsible for my home now that the regular one is on maternity leave. That meeting will be on March 10.

#WeekendCoffeeShare (February 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. No more coffee for me today, as it’s nearly 8PM. Please grab yourself a cup of your favorite beverage though and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been all over the place. We’ve had rain, sunshine, temperatures around 9°C and freezing nights. In the province of Groningen, there was a code red weather warning for ice.

If we were having coffee, then I’d share that I haven’t been very physically active again this past week. That is, I did go for walks almost each day, but I didn’t do any other exercise.

If we were having coffee, I would share that I however was quite crafty over the week. I made a bracelet and tried making another one. I also tried to work with a texture mat on polymer clay for the first time today. The result was interesting.

If we were having coffee, then I’d tell you that the homemade granola I baked last week was a great success. I made another batch on Wednesday, this time adding instant coffee. This one didn’t turn out as awesome as the previous one and I’m not sure whether it’s the nuts maybe having gotten slightly burned or it’s the coffee flavor not matching well with the other flavors. I gave some to a fellow resident who likes trying homemade food, but he didn’t like it.

If we were having coffee, I’d tell you that I finally heard from the Center for Consultation and Expertise (CCE) consultant. I received a short note describing recommendations she’d make to my care team. She’s going to provide continuing education to the care team on these things.

I don’t know how to feel about the whole thing. On the one hand, I’d like to see her saying she’s going to educate the team as a sign that I don’t need to change but the team’s approach to me does. On the other hand, it still stings that she hardly spoke to me and not at all without the staff being present. I still have quite a lot of questions, but her work with me has ended with this letter.

If we were having coffee, I’d tell you that the occupational therapist came by here this week to shed some light on ways to help me cope with my hand tremors. She hoped a weighted wristband would help. I was initially quite optimistic, but on the first try when my hand was trembling, I noticed it not only made no difference in that respect, but the thing was in the way when I tried to operate my iPhone.

I from noticing that got rather frustrated once again about the doctor not being clear about what causes these tremors. She claims it’s aging, stress and maybe medication, yet refuses to taper my meds more quickly. I’m kind of worried that, like the CCE consultant and practically everyone involved in my care, she’s not giving me the full story. I know I have a right to information regarding my medical care, but there are exceptions to this when the clinician believes this information would significantly harm the patient. If this is the reason I keep getting only vague comments about my medical situation, I want to tell my physician I’ve already envisioned the worst and the uncertainty is more harmful to me than it would be knowing I have, like, a neurodegenerative disease.

If we were having coffee, lastly I’d share that my ears are blocked and I hardly hear a thing out of my right ear. I will get them syringed on Sunday.

#WeekendCoffeeShare (January 30, 2026)

Posted on by Astrid

Hi all! I’m joining #WeekendCoffeeShare today. Yes, on a Friday. Tomorrow, I’ll wrap up the month of January, but I really want to write today too. It’s 7:30PM as I start typing this, so no more coffee for me. I’ll once again take a break at 8PM for my Friday evening chips and soda. I’ll have to shower too, so may not return to the computer until like 9PM, because I don’t want to be using the computer with wet hair. If you’d like, 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 been chilly. Scratch that: it’s been cold! Daytime highs early in the week were around 4°C, but yesterday I believe it was freezing almost the entire day and we got snow again. I want spring, for goodness’ sake! It isn’t helpful to realize that February is the coldest month of the year here in the northern hemisphere.

If we were having coffee, then I’d tell you that I hardly walked all week. That is, today I did go for a 45-minute walk around grounds because I wanted to orient the home’s team leader, who’s working one day a week at our home as a support staff, to my walking routine. Yesterday, I didn’t walk at all, but did somehow activate an outdoor walking workout on my Apple Watch while just pacing around my room. I was also sitting down a lot and only managed 100m or so in 34 minutes. Thankfully, I was able to delete the “workout”.

If we were having coffee, I’d share that, on Sunday, I bought a new winter coat. I gained a little weight, so my old one was a bit too tight and had a tear in it. My wife offered to fix it, but after thinking for a bit, I said no. Unfortunately, I’d left my gloves in it and she’d already taken it home with her when I realized this, so this meant no gloves for the entire week. By the way, the new coat cost only €30.

If we were having coffee, next I’d tell you I didn’t end up going to the Eye Association meeting I was supposed to go to today after all. I shared last week that I had planned on going to a meeting for people with mild cerebral palsy this Saturday (January 31), but had decided against it for transportation reasons and because I had another meeting today. Well, early in the week, my assigned staff told me she wanted to talk some things over with me. Besides, I thought I had a physical therapy appt today too. Looking back, the things my assigned staff wanted to discuss, weren’t of major importance and the physical therapist’s appt was yesterday, but well.

If we were having coffee, finally I’d tell you that one of the things my assigned staff did want to discuss, is my day schedule. Unless the behavior specialist or my support coordinator has major objections, I’ll finally have two weekly kitchen-based activities in it soon. The staff did ask that, when I cook, it’s initially just for myself and maybe one or two others, because if we decide I’ll cook for the entire home, this means too much pressure on me (and potentially the staff). I agree with this.

Trying to Celebrate Small Wins #JusJoJan

Posted on by Astrid

Hi everyone. I have been struggling with mixed feelings about my day schedule and the things I accomplish or don’t accomplish during the day. Sometimes, I feel like there’s been quite a lot I’ve done, but on other days, I focus on the hours I’ve spent staring at the wall.

The difference isn’t just dependent on how much I actually did in terms of crafting, cooking, walking, reading, etc. It’s sometimes also a matter of perspective. I mean, I spent most of my allowed activity time slots just chatting with staff today. I could focus on that and on the fact that, with some help, I could’ve turned them so much more productive. Then again, I could also focus on the things I did achieve. Today, for example, I crafted a polymer clay snake.

It frustrates me to no end that my day activity goal is so vague that it’ll be achieved regardless of what I do or don’t accomplish during the day. I had worded the main goal myself, saying I’d like to do at least one meaningful activity each day. To this, however, my then assigned staff added examples, including dice games, and a caveat that if it looks like I’m in distress or tired, the staff can suggest doing smalltalk or extra moments to lie in bed, saying everyone needs rest. By this logic, each day is meaningful even if I’d spent it entirely in bed.

And that’s not entirely untrue. What makes it untrue is the part where staff decide for me which activities give me meaning and when it’s appropriate for me not to engage in them. In other words, it’s worded as an excuse for staff not to help me find and engage in meaningful activities. If I chose to lie in bed all day, like I did last September when sick with probable COVID, it’s quite different from all the times staff have suggested I lie down. If I chose to be lazy, it’d be on me, but if the staff choose to be lazy and twist it to mean they’re meeting my needs, we’re having quite a different situation.

I do try to celebrate the small wins though. Like today’s snake. That doesn’t mean I can’t wish for improvement, particularly because a lot could be improved without me getting more support hours. Would it be harder on the staff? Possibly, but not necessarily. I mean, listening to me moan about my quality of life, is no doubt exhausting to some staff too. And besides, it isn’t my task to make staff’s work day meaningful.

However, it does help me personally to focus on the things I do achieve rather than the things I don’t. I’m genuinely happy about the snake I crafted. Yesterday, I even did two crafty activities and met my movement goal on my Apple Watch by walking. I try to celebrate that. Celebrating my small wins gives me joy.

This post was written in response to today’s prompt for #JusJoJan, which is “celebrate”.

Mindfulness As an Activity #JusJoJan

Posted on by Astrid

Hi everyone. Happy New Year to you all! I’m happy to read Linda has given #JusJoJan another go and I’m going to try to participate again. Today’s prompt is “mindfulness”, which really speaks to me.

When I first learned about mindfulness, I was in dialectical behavior therapy for my emotion regulation issues. All I remember of it at the time were rather abstract concepts like imagining your thoughts are like clouds in the sky. I couldn’t put these concepts into practice at all. I mean, observing my thoughts felt so completely alien to me. Same for mindful breathing exercises. I’ve tried them, a zillion times, mind you, but I always end up being distracted.

Then, a few weeks ago, I was listening to a podcast episode of one of the ADHD podcasts I listen to occasionally. Not that I have a diagnosis of ADHD, but I relate to many of its traits. The episode was about seven different kinds of rest. In it, the podcaster described seven different ways of rest that we all need, including physical rest, mental rest, spiritual rest, etc. None of these in her particular experience involved napping. Also, by doing just one activity, the podcaster said you could be resting in more than one way.

For example, she mentioned going on a walk and, while on her walk, being conscious of every red thing she saw. This is mindfulness in a totally different respect than imagining your thoughts are clouds. It totally spoke to me!

Now of course I’m totally blind so counting or naming red objects doesn’t work for me. But I’m sure the same principle can be applied to sounds or any of the other senses. I’m going to give it a try when I next go on a walk.

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.

#WeekendCoffeeShare (September 27, 2025)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare for the first time in over a month. It’s nearly 10PM as I start typing this, so no more coffee for me. I did have a mug of green tea about half an hour ago, but for now it’s just water. Feel free to grab yourself a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Not that I’ve experienced much of it, as I spent most of the week indoors with what I believe to be COVID. The daytime highs most days have been around 17°C and we didn’t get much rain.

If we were having coffee, then I’d share that I paused my activity rings on my Apple Watch because I was too obsessively trying to meet my goals while being sick. I originally intended to restart them yesterday, but for now they’re on pause until this coming Tuesday.

If we were having coffee, then I’d tell you that, today, I finally feel like I might be on the mend. Being me, I did immediately go for a 30-minute walk. My average heartrate was 140BPM, which is high even for me. Let’s hope I won’t be exhausted tomorrow.

If we were having coffee, then I’d share that my spouse finally visited me today. We hadn’t seen each other in a few weeks even though it was our wedding anniversary on the 19th. Then though, I was sick with that could-be COVID thing. Today, we still didn’t do a lot. We went to a nearby pancake place to have lunch.

If we were having coffee, I’d tell you that, on Wednesday, the Center for Consultation and Expertise consultant came by. Like I said on Tuesday, I was only informed a day in advance and the consultant gave as little information about herself as she could (ie. just a first name). I feel incredibly distrustful of the entire process because of this. One of my assigned staff, the student, attended the meeting with me and it was more her telling the consultant what she thinks could be improved about my situation than me. I honestly fear this whole consultation is going to be a waste of time and money, as if the staff already know what I need (which, frankly, they don’t), why involve an independent consultant?

If we were having coffee, lastly I’d share that the student who’s my assigned staff, is leaving on Monday. She’s going to work at the intensive support home I used to live at and I’m struggling not to use that against her. I did, with some difficulty, create a necklace for her, which I’m going to give her when she has her last shift here.

The Could-Be COVID Chronicles, September 2025 Edition

Posted on by Astrid

Hi everyone. It’s been over a week since I last wrote a post for my blog. I’ve had some ideas on my mind, but I’ve been battling what I believe could be COVID since Wednesday. Here in the Netherlands, all official precautions and regulations were ended in early 2023 and replaced with a recommendation to “use common sense”. Now my institution has always been rather careless when it comes to quarantining people suspected of having COVID and I myself am not the most sensible either when there are no rules.

On Wednesday, in fact, I was cooking burgers for the entire home when this whole thing started. I blame myself for several other clients and half the staff being sick now, but the staff say they would probably have caught it somewhere anyway, just like I probably caught it from a staff coming to work sick on Monday last week.

On Thursday, I was in bed all day, but I felt better on Friday, so I decided to go for several walks and a dance. Not a good idea if I indeed do have COVID, as not resting well enough can contribute to having long-term symptoms.

Saturday, I was in bed again for most of the day but dancing at 11PM in my room again in order to meet my movement goal on my Apple Watch. I then decided I really had to rest, so lowered my movement goal for that day and paused my rings altogether on Sunday until tomorrow.

I’m now feeling okay, but not nearly back to normal. Tomorrow, the Center for Consultation and Expertise consultant is coming. There are no longer any rules prohibiting them to visit me and several other staff are working while having symptoms now too. Besides, I didn’t have a say in inviting them, so I don’t feel in a position to cancel.

I do feel guilty for basically doing what everyone else is here, ie. living my life as if COVID is no longer a threat. I know, I don’t know whether I actually have COVID since testing is no longer a thing here either, but I definitely feel this is more than just a very nasty cold.

#WeekendCoffeeShare (August 15, 2025)

Posted on by Astrid

Hi everyone on this warm Friday evening. I’m joining #WeekendCoffeeShare. I usually do mine on Saturday, but I’m motivated to write now so let’s make use of it. I just had my evening soft drink and a single-serving bag of chips. I’d recommend you’d grab something to drink if you were here. Let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been hot all week. In fact, I’m pretty sure we have a local heatwave, meaning five days in a row of daytime temps above 25°C, of which three with daytime temps of 30°C or above. I haven’t checked the news in months and don’t want to check it now, but I don’t think it’s a national heatwave.

If we were having coffee, then I’d share that, thanks to the nice weather, I was able to eat outside three or four times this past week. Did I share my spouse gifted me a new outside table, because I’d broken the one I’d gotten last year? My spouse had ordered it online and had had it delivered to the institution. We hadn’t seen each other since, so yesterday after a lot of pestering, I decided to snap a picture. I rarely take pictures fully independently, so if this one’s unclear, I apologize.

If we were having coffee, then I’d tell you I’m still going strong with my movement and exercise goals on my Apple Watch. On Saturday, I did in fact break my active calorie record. Yesterday, I broke a record with the longest bike ride. My Apple Watch also said I burned the most calories during a cycling workout, but I doubt that’s true.

If we were having coffee, next I’d announce my participation in the Walk on Sunshine on October 4. It’s a walk to raise money for the Dutch cerebral palsy charity CPNederland. The goal is to walk at sunrise. Sunrise is at 7:45AM that day and the staff usually don’t get here until 7:30, but one of the staff agreed to come here early and do the walk with me. I signed up for the 5km walk, because that’s a challenge for me particularly in the morning, but not impossible.

If we were having coffee, lastly I’d tell you all that I’m still struggling. I experience a ton of trust issues towards my staff and am not sure these are entirely unfounded. Like, today my spouse and I were on the phone during my entire late afternoon activity and, though it was nice to talk to my spouse, I worried that the staff are going to cut my care hours because of it. After all, for some time they tried to make my spouse visit me each Sunday so that they could cut my hours.

Honestly, I think I’d be much more independent if I knew that, when I have a bad day or a bad moment, I can always get some extra support. In this sense, my psychologist back in the mental hospital was right that anxiety is part of the reason for my dependence. However, her subsequent actions to “treat” me, ie. kicking me out of the hospital into independent living with minimal support, actually worsened my situation. So did my staff’s decision back last year about my having to compensate for every moment I needed extra support due to distress. These and other strategies, while intended to encourage self-reliance, actually achieved the very opposite. After all, my abilities fluctuate and my mental state doesn’t adhere to a day schedule, so that I’m only in distress when I have one-on-one. No, I don’t purposefully work myself up in order to get more support, but my mistrust of my staff’s continued actual support does lead to distress.