#WeekendCoffeeShare (June 13, 2026)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 7:40PM as I start typing this post, so I’ll soon take a break for my evening soft drink and chips. I made a smoothie for myself and my fellow residents about an hour ago. It was good. I used frozen mango, pear, flaxseed and soy milk. Feel free to grab a virtual cup yourself (I’m pretty sure the real smoothie has all been consumed). Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, we had daytime temperatures around 18°C. We also had rain, wind and some thunderstorms.

If we were having coffee, next I’d tell you that this week, the institution’s four-day evening walking event was held. That is, two out of four walks were canceled because of a code yellow weather warning for thunderstorms. On Thursday and Friday, the walk did go on, but we were soaked in rain on Thursday.

If we were having coffee, I’d share that I’m still going strong with my movement goal on my Apple Watch despite the weather. I’m not meeting my exercise goal each day, as sometimes the weather only permits one short walk, but apparently it’s still easy enough to burn 300 active calories each day. I am currently only 1kg overweight, by the way, which is why it kind of surprises me I still meet my goal relatively easily.

If we were having coffee, I’d tell you my week has been hard in other respects. Early in the week, I needed support during the night, waited patiently for a staff to make his way from the main building to me only to find out later on he’d been spending ten minutes putting away dangerous objects from the living room before seeing me even though there hadn’t been a reason to think I’d use them. I heard him rummaging about in the living room, so asked what was going on, thinking maybe it was a fellow client. He said it’d been him, the night staff. “And it’s night, so please go to sleep.”

A few nights ago, I did go to the kitchen and pulled out scissors but didn’t use them. This prompted the night staff to request the kitchen be locked at night again because of the time it takes the staff to make their way here. This request could’ve been reasonable (if a little overboard), if not for the fact that the kitchen only has a gate, not a full-size door. This means I can easily climb over the gate using a chair, causing a fall risk that in my opinion outweighs the risk of me self-harming using one of the objects in the kitchen. Besides, if you want to eliminate every risk of a client self-harming, well, you’d need to drug them up and tie them down. This question, whether clients need to be kept safe from harm at any cost, has been on my mind a lot. As much as I cling to life itself though, surviving is meaningless if my quality of life is poor.

This same issue came up on Wednesday when I saw the physical therapist. She’d recommended I start using a rollator walker. I’m not altogether against it, although I did say so when she came by with it, but that’s more because she claims she won’t do anything for me unless I start using the walker. The reason I’m leaning towards rejecting it for now is the fact that with it being incompatible with a white cane, it’d lead to even further dependence on non-disabled people than I already experience. I know it’d theoretically at least cause me to walk more safely, but the only times I’ve fallen over the past year have been times I didn’t wear my orthopedic footwear for one reason or another (usually because it was at the repair shop yet again). The physical therapist keeps saying nothing can be improved about the footwear, promised me an extra pair of shoes but never got to actually making sure I’d get one and is now saying I shouldn’t walk as much as I do. She isn’t giving me any alternatives to walking either. This and other things make me believe the professionals’ feelings about risk are more important than my feelings about my quality of life.

If we were having coffee, I’d share that I’m stressing quite a bit over the divorce. The final appointment with the mediator was supposed to be last Tuesday but got postponed a week for practical reasons. I’ll also have a meeting with the client confidante, my assigned staff and the behavior specialist on the same day. I try to separate the divorce from my care situation. However, the fact remains I’ll be literally homeless without the care home from this coming Tuesday on.

If we were having coffee, finally I’d share that I was on the phone with my wife between my evening soft drink and finishing this post. I told her I’d been making smoothies. Then we got talking about blogs. My wife joked that mine isn’t juicy enough for the divorce mediator to read, so I replied that I’d have to share smoothie recipes to make it juicier. That made her laugh out loud.

#WeekendCoffeeShare (June 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I just had my evening coffee and will probably take a break from writing this post to have my soft drink and chips at 8PM. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been less hot and more humid than it used to be. The daytime temperatures this week were often around 18°C and it’s been rainy. We also had quite a few thunderstorms. I’m not liking the rain and still sweating as it’s still warmer than I’d like (is this perimenopause hitting?), but I tell myself this weather’s more normal climate-wise.

If we were having coffee, I’d share that I reached a perfect month with respect to my movement ring on my Apple Watch in May. So far, I’m still meeting my goal each day, though it’s been challenging with the rain. I didn’t complete my monthly challenge for May, by the way.

If we were having coffee, I’d share that I’m still struggling with my care situation and whether it’ll actually work here or not. The behavior specialist did reassure me that they can’t kick me out even if it turns out this place can’t provide the care I need.

I was worried about being kicked out after I had several more incidents in which staff used excessive force and I was quite blunt that I won’t have to put up with it. The meeting with the care confidante has been scheduled for the 16th. The substitute behavior specialist will be gone by then and the regular one will have the meeting with us. She can be a bit, well, challenging. This caused me to feel scared that, if I put my foot down that I won’t have to deal with force unless absolutely necessary to prevent/avert serious problems, she’s going to turn it into a battle around care refusal. I had this experience before. Let’s hope the meeting goes as well as possible.

If we were having coffee, I’d share that I did have some positive experiences this past week. On Monday, my staff and I decided to take pictures on our walk on grounds. I ran them through the image description tool built into JAWS and it was really good.





On Thursday, the same staff offered to help me create a soft pastel drawing using one of my unicorn templates. I hung it onto my bathroom door, but unfortunately it crinkled when I opened the door too many times, so I removed the drawing. I did snap a picture though.

If we were having coffee, I’d share that I cooked dinner twice this week. On Wednesday, I cooked minced meat, rice and vegetables for just myself. I didn’t really enjoy it, because I’d gotten it in my head that the mince was infected with prion-borne disease. My wife, who is a vegan, isn’t the right person to comfort me in this respect (though she did try), but she is the right person to advise me on how to cut back on animal products and eat more healthfully in general.

I decided to cook a vegetarian pasta dish this Saturday. On Wednesday, I had to make a grocery list for it and I decided kind of impulsively to cook the dish for my side of the home. I cooked orzo with spinach and tomatoes. I initially thought I wouldn’t like it (don’t ask me why I picked it then), but I did and so did my fellow residents!

I just ran the photo of this dish through the image description tool and I’m not as content with the description this time.

If we were having coffee, lastly I’d share that the final meeting with the divorce mediator will be on Tuesday. I’m struggling quite a bit with the reality of my wife and I divorcing. I mean, I try to tell myself we’ll remain best friends, but I can’t just shut down my anxious attachment style.

Besides, the behavior specialist does seriously wonder whether I’m in the right care home. I did tell her that, if it turns out it’s in my best interest to move again, I don’t want to be handed over like a parcel, like I was when I left Raalte and when I came here. This does have me consider several factors involved in potential new care homes, including the distance from my best friend. Like, if the most appropriate care home for me is across the country, does this mean I’ll be all alone there? It’s all quite complicated and stressful.

#WeekendCoffeeShare (May 23, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I originally started typing this post yesterday evening but got distracted and distressed and then never finished my post. It’s now nearly 9PM on Saturday. I just had my evening soft drink but since it’s blazing hot out here, I’ll have to make sure to drink plenty of water. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d expand on my comment about it being blazing hot and talk about the weather. Early in the week, the daytime temp barely got above 12°C and we had rain. On Wednesday, the daytime temperature started to rise and today it’s 30°C. I honestly don’t mind as much, although of course it still being May this makes me worried for the real summer.

If we were having coffee, then I’d share that I am still in the game for a perfect month with respect to my movement ring on my Apple Watch. April was a hard month and I didn’t meet my goal several days. This month, I’m probably not going to meet my monthly challenge goal, but at least I still have a chance at closing my movement ring each day.

Yesterday, the staff and I originally planned on riding the side-by-side bike to the nearby lake for a cup of coffee (and my favorite caramel pie). Unfortunately, the bike wouldn’t work properly so we went for a walk instead and stopped by the institution townhouse for a coffee. They sometimes offer cake too, but apparently not this time.

If we were having coffee, I’d share that I made use of both my culinary activity time slots this week. Today, I baked a banana cake. The bananas should’ve been riper, but it was okay nonetheless.

On Wednesday, I cooked a one-pot pasta dish with broccoli, chicken and pesto sauce. I’ve given up my idea of cooking vegan dinners only, because all the prep is just too hard.

Besides, the behavior specialist noticed how happy cooking for my fellow residents made me and talked to my support coordinator about it. Soon, I’ll likely have a weekly opportunity to cook for my side of the home. Whether this will be full-on dinner prep each week, will have to be decided on.

If we were having coffee, next I’d share that the behavior specialist came by on Thursday for a talk. It’s a shame she’s a substitute, because it looks like she’s much more understanding of my situation than the regular one. I do hope that she’ll be able to talk some sense into the regular one when she comes back in a month or so though.

It isn’t like she wasn’t critical of me, of course. For example, she asked me whether there’s any risk in my writing about my life in the institution openly online for this care agency. I was up front with her that I can be quite harsh in my criticism of my staff and, if they read it, they may recognize themselves. However, I never name my institution or any individual workers. Not that, being that I’m not an employee, there’s any law prohibiting me from naming and shaming the institution if I so wished, but I can see it wouldn’t help my relationship with my staff. That’s why I don’t usually give out my blog address to staff.

One of the positive outcomes of our meeting is the fact that the behavior specialist and I got talking about my IQ. As regular readers of this blog know, the IQ that’s in my care plan was pulled out of mid-air, in that no-one except for me knows where it came from and until now, no-one seemed to care. It turns out she’d been looking for the report and couldn’t find it. Phew, finally! I explained that the report is nowhere to be found except on my personal computer. The report literally dates back to 1999 and isn’t the best childhood psych eval report I have at that. But it’s the one with the catchiest punchline, ie. the three-digit IQ score. I never realized myself until very recently that most staff, being practically educated, go right for catchy bullet points and, as a result, won’t remember the pages and pages of information about my emotional development when they’ve been wowed about my “super high” IQ. In any case, here’s hoping the behavior specialist will finally get this nonsensical number removed from my care plan.

If we were having coffee, I’d then ramble on non-stop about the other issues this meeting brought up. Do you have a couple hours? I just deleted an incredibly long paragraph because I saw my post was fast approaching 1000 words. Instead, I’ll wrap this up and go to bed, as it’s nearly 11:30PM by now.

#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?

February 2026 In Review

Posted on by Astrid

Hi everyone. I’m joining Natalie’s monthly wrap-up again, as it’s the last day of the month. Honestly, this month was a real mixed bag.

It was, of course, the month it finally dawned onto me that I’m actually declining. I have had this belief for years, but it’s hard having it confirmed by a doctor. Not knowing for sure what the diagnosis or prognosis is, besides it not getting any better, is quite frustrating. I still can’t fully wrap my head around what my physician actually said. I mean, yes, of course literally everyone gets older every single day, but old age, besides the fact that this obviously doesn’t apply to me yet at 39, isn’t a medical diagnosis.

The realization that I’m not getting any better and the thought that I may not even see 2034, has caused me an increased sense of urgency about getting out of life all that I can. Sometimes, this has led me to actually do things I enjoy more than I used to.

I did craft a few things. I also finally hopped onto the cottage cheese bandwagon and baked some goodies. No pictures, sorry. The first time I tried baking with cottage cheese, I added too much almond flour, so the bake became too hearty. I also added garlic powder and suffered heartburn from it all night. The second time, yesterday, I made a breakfast bake with blueberries. I actually enjoyed this.

I also cooked one main meal for my side of the home, another chicken curry. I’m still hoping to cook or bake more often in March, even if it’s just for myself, but I’m less optimistic about it than I was before.


I also, like I shared yesterday, had some days on which I was quite active physically. Early in the month, I struggled to get in any movement at all, so no perfect month for me on my Apple Watch.

I did manage to journal each day (except for today so far, but I’m going to do that after I finish this post). Most days, it was just a quick daily wrap using a template and I’m not so sure it actually helps me, but it doesn’t hurt me either. I only published eight blog posts including this one. That feels a bit disappointing to me.

Some days, and there are more of those than I’d like, my knowing that I’m declining leads to increased inertia. I hope that will get better as the days grow longer and the weather improves.

One last positive: I finally bought a Warmies stuffed unicorn. I have shared a few times about my microwave-safe stuffies that give off a lavender scent when heated. I used to have several, but the last one I had got damaged in the washing machine a few weeks ago. The Warmies ones though have a removable lavender filling. Now that I’ve got the unicorn, I want a few of the others too. By the way, I took the picture of this unicorn myself. I tried a dozen times to snap a better picture, but all of my other attempts were even worse than this one.

#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 (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.

#WeekendCoffeeShare (January 17, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again today. It’s nearly 7:45PM, so I’ve had my last cup of coffee for the day and am soon going to step away from the computer to have a soft drink and chips. Grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Last Sunday, it was freezing still with nighttime temps as low as -9°C. Yesterday and today, the daytime high was 10°C. Mother Nature is having mood swings.

If we were having coffee, next I’d share that, this week, I’ll probably have a perfect week with respect to my Apple Watch activity rings. I’m not all that ambitious about it, honestly, but it’s nice to see a virtual medal. Yesterday, I did complete the New Year’s challenge, which is to close all of your rings seven days in a row sometime during January.

If we were having coffee, next I’d update you on the assigned staff/support coordinator thing. I mentioned a few weeks ago that my assigned staff is in training to become a support coordinator and after that, it’d originally been decided she’d be both my support coordinator and assigned staff, with some stupid comment about me being able to come to anyone with my concerns. That was rather frustrating for me, as then everyone would be making decisions about me and my support would be even more chaotic than it already is. Well, yesterday I was told that my current support coordinator will remain my support coordinator for now and my assigned staff will remain my assigned staff.

I did have an argument about this with another staff today. There’s been made a decision about my showering routine which she disagrees with and she’d been telling me how she felt about it. I told her to stop coming to me for changes to my support agreement, instead going to either my support coordinator or assigned staff. She then claimed that she would no longer be doing fun activities with me, as that’s an assigned staff’s job too. That’s not true and it felt like she was using black-and-white logic. Unfortunately, this particular staff isn’t very able to accept criticism.

If we were having coffee, then I’d tell you I did enjoy some fun activities over the week. On Thursday, I went to have lunch at the institution townhouse with a staff. I chose a poke bowl.

Yesterday, I rode the side-by-side bike to the market in the next town. I bought olives, feta-filled green peppers (which it turned out I like despite thinking I don’t like feta), arugula and spinach and tried to buy fried chicken, but it was almost sold out. The vendor gave me what he had left over for free.

If we were having coffee, I’d share that my wife and I are pretty certain we’ll get a divorce after all. On Tuesday, she and I will be meeting up with a financial advisor to discuss the financial consequences of getting a divorce. I’ll still need to do some official ID stuff before that, but my wife is going to help me with this when she’s here tomorrow.

If we were having coffee, finally I’d share that I bought new earbuds. Yes, again. I bought JBL earbuds, because, though I have AirPods and JBL headphones, I prefer earbuds to headphones and yet the AirPods don’t work well with non-Apple products. I’m not yet entirely sure I like the new earbuds, but they weren’t horribly expensive.

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”.

#WeekendCoffeeShare (January 3, 2026)

Posted on by Astrid

Hi everyone. It’s nearly 9:30PM as I start typing my #WeekendCoffeeShare post, so no more coffee for me. I just had a cup of orange-flavored green tea. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s cold, windy and snowy thanks to weather phenomenon Anna in Scandinavia. I can deal with the cold, but the wind and snow are rather annoying.

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

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

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

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

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

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