#WeekendCoffeeShare (October 16, 2026)

Posted on by Astrid

Hi everyone. It’s been a while since I last touched the blog, sadly. I somehow couldn’t get motivated. Today though, I’m joining #WeekendCoffeeShare again. It’s 9:30PM as I start typing this post and I’ll probably go to bed right after finishing it. Will check out my fellow coffee share bloggers tomorrow.

If we were having coffee, first I’d talk about the weather. It’s still been insanely warm for this time of year. Yesterday, the daytime temp even reached 20°C. We thankfully did get some rain.

If we were having coffee, then I’d tell you I have my first proper cold of the year. Yes, the year, not the season. It’s no fun, but I’m intensely grateful I’ve avoided it so far. I mainly have a nasty cough and a little sniff. Of course, I’m a little tired too, but it’s nothing compared to the probable COVID I had a little over a year ago.

If we were having coffee, I’d share I’m still meeting my movement goal on my Apple Watch each day. Not my exercise goal, as some days, I can’t or don’t want to go for a longer walk and the side-by-side bike was taken in for repairs last week. I guess I did break it when I had that meltdown on the bike a few weeks ago after all, though it wasn’t solely my responsibility, since the fact that staff denied the problem and kept using the bike most likely didn’t do it any good.

If we were having coffee, I’d share I am still undecided as to whether my food processor thingy was worth the money. I’m leaning towards regretting having chosen this one, but not having had any other one, I can’t know whether it’s this brand or food processors just aren’t all they’re cracked up to be.

I did cook a meal using it last week as well as this past Wednesday. Last week, after we figured out how to attach the accessory for blending my sauce, it did a great job. I cooked a pasta dish with roasted bell peppers.

This week, I used the same add-on to chop some garlic and ginger and blend it into a curry paste, but it turned out the care home’s cheap immersion blender did a better job finishing the process than my food processor. I’m not sure whether I somehow broke the equipment or whether it’s just no use for this particular job. I must say my piece of ginger was quite large. Either way, my curry was good after all.

If we were having coffee, then I’d tell you that, today, I finally managed to play some with polymer clay again. Nothing fancy, just a simple Christmas ornament and something I might turn into a pendant later on, but it was fun.

If we were having coffee, finally I’d share that I’m struggling intensely with worries about the future, particularly relating to my need to move again. Last week, I found out that it’s unlikely my current care agency will be able to support me, in that their current homes aren’t suitable for me. They have one place that’s currently being developed that the behavior specialist said they’re still looking into. That place would be ideal in terms of distance to my best friend, so I inquired about how seriously this place is being considered, given that it won’t be opened until May of 2027 or maybe even later. No response to that. Then yesterday I found out that somehow it’s been decided that the independent client supporter will take over applying to new places rather than my care agency’s placement person. I asked them whether this means the place I was told about last week isn’t an option after all. No response so far.

I’m struggling with this especially because I’m more and more convinced that there won’t be a suitable place for me anyway. I mean, there’s no doubt there are places in which staff are more able to cope with challenging behavior, but how they choose to cope with it likely won’t be helping me. Like, my last home was officially much more equipped to deal with challenging behavior, but they ended up treating me like trash.

It doesn’t help that, on Monday, a staff who has known me from my previous home and is now a regular substitute staff here, claimed I did much better at my last home and during the first year I was here. This honestly has me feeling that what staff see as me doing well is almost entirely contradictory to how I see it. After all, even though it may not look like it from my blog, my day-to-day quality of life is better than it was three or four years ago.

#WeekendCoffeeShare (September 19, 2026)

Posted on by Astrid

Hi everyone. I really wanted to write a post yesterday. In fact, I had several ideas in mind. However, by the time I’d sorted through my ideas, it was already past 11PM. One of those ideas was, of course, a contribution to #WeekendCoffeeShare. I’m doing that now. I’ve had my last cup of coffee for the day and will soon get my evening soft drink. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, as usual I’d start out by talking about the weather. On Tuesday, we had a gorgeous late summer day with temperatures rising to 26°C. For the rest of the week, temps have been less extreme. In fact, I’m already occasionally wearing a sweater.

If we were having coffee, then I’d tell you I’m still meeting my Apple Watch’s movement goal each day. Today, I got my September challenge badge too. I am still mostly exercising by walking, but did ride the side-by-side bike to the next town again on Tuesday.

If we were having coffee, then I’d tell you I’ve finally been claying again. On Monday, I tried to make a unicorn for the intellectual disability physician, who’s retiring in a few weeks. I’d already made her a card, but wanted to make something out of polymer clay too. Unfortunately, we were in a bit of a hurry and it showed in the result. I’m still not entirely sure what the exact problem was, but parts of the thing broke off way too easily.

Thankfully, on Thursday, I was able to give it another try and this time, my unicorn was a success. I used seed beads for the eyes. The green blob on the side that my camera doesn’t properly capture is once again a four-leaf clover.

If we were having coffee, then I’d tell you I’ve been quite active in the kitchen too. On Wednesday, I cooked a zucchini and pumpkin pasta bake for my side of the home. The staff tried to show me how he cuts zucchini, but despite it not working for me,I tried one too many times. This caused me to cut into my thumb. The cut isn’t bad, thankfully. In fact, the most distressing aspect was my fearing the staff would not allow me to cut up my own food anymore. Thankfully, this isn’t the case.

If we were having coffee, I’d tell you I did some reading again over the past few days. I may’ve shared that my Braille display is perpetually acting up, so I don’t use it by default anymore. Yesterday, I finally figured out how to use Voice Dream Reader, the iPhone’s main accessible book app, without my Braille display. Sort of, that is. I still prefer my Braille display, but until I can get it fixed, I don’t want to use it too often in case I cause further damage.

I also did read a book in the native iOS Books app. I used both my Braille display and VoiceOver’s speech synthesizer for this. The book is called These Bodies Ain’t Broken and it’s an anthology of YA horror stories featuring disabled protagonists. So far, the stories are very good, though I’m beginning to believe being a little hard to understand is a feature of the genre.

If we were having coffee, finally I’d say that there’s still no news on the moving front. I lived in my current care home exactly three years yesterday. It’s making me sad, honestly, realizing that even in supposed long-term living places, I can never seem to make it last. I mean, the longest I’ve ever been in one place during my adult life was just over four years and that was at the psych hospital’s resocialization unit that had been clear from the get-go that my stay there would be temporary. I’m thinking I shouldn’t be commemorating big days like these anymore. I didn’t yesterday, but it’s still hard to completely let go of the grief.

Crafty In the Kitchen

Posted on by Astrid

Hi everyone. Esther’s writing prompt for this week is “crafty”. I could of course moan about the fact that I haven’t been crafting anything with polymer clay in at least a month. However, the reason that polymer clay is taking a back seat, is the fact that I’ve been crafty in many other ways. I mean, is cooking a craft? And if so, am I good enough at it to consider myself crafty in this respect? This is a question of skill and of self-esteem that I won’t go into right now. The main thing is that I’ve truly been enjoying being crafty in the kitchen.

Yesterday, a staff who’s almost as easily stressed as I am, was assigned to me for my two-hour activity time slot and I’d planned to cook. What’s more, I’d planned to create a crispy rice salad with tofu, lots of vegetables, a homemade dressing and of course fried rice. Oh my, was I scared! Thankfully, the staff admitted that so was she and this opened the door for both of us to remain calmer than we’d be if we hadn’t been open about our vulnerabilities. And guess what? The process went well and the salad was absolutely delish! The original recipe was for four servings and I didn’t have the guts to change anything, so I had quite a bit left when I’d consumed my meal. Thankfully, I knew this in advance so had asked a fellow resident who loves the cooking experience whether he’d like a serving too. He did and he liked it too. So did the staff I’d cooked it with. So now the three of us all had some extra, but that’s totally okay. By the way, MyFitnessPal was finally content with my protein intake and like I said I hadn’t even eaten meat.

I also love whipping up random food from things I still have left over from previous culinary endeavors. For example, on Tuesday, I made an avocado-chocolate mousse. I looked for coconut milk and cacao powder to go into it when at the supermarket with my best friend on Sunday. We didn’t find the cacao powder, but thankfully I still had enough in my cupboard. However, the recipe only called for 125ml of coconut milk for six servings and the smallest container was 200ml.

Until recently, I’d have thrown away the leftover coconut milk. I’m not saying I won’t do this anymore, as sometimes I totally forget that I have something left in the fridge. However, today I did remember and I whipped up what I’d planned to be a smoothie. I couldn’t find any recipe that I had all the ingredients for, but I experimented by adding frozen mango and the leftover coconut milk to my kitchen machine’s blender. What do you English-speaking people even call a multipurpose food processor/stand mixer/whatever? That’s the thing I have. Anyway, the mixture was way too thick to be a smoothie, but it was delicious as a mousse.

Experimenting does sometimes lead to less desirable results. This evening, for example, I tried to make a homemade chai latte, but my homemade chai mix probably has way too much black pepper in it. I still hope that’s not the problem, as I also added it to my overnight oats for tomorrow. However, I must say culinary craftiness does help me develop my sense of what I like and dislike and why. There I’m talking self-image after all.

#WeekendCoffeeShare (July 4, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s nearly 10PM as I start typing this post and I’ll soon need to brush my teeth, but I’ll finish this post before going off to bed. I just had my cup of green tea. If you’d like something to drink either hot or cold, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. The heatwave has thankfully ended and we now usually have daytime highs of about 24°C, sometimes even cooler. It’s been quite windy and occasionally rainy too, so I’ve actually even been wearing my jeans again.

If we were having coffee, then I’d tell you that, obviously, I didn’t meet my June monthly challenge goal on my Apple Watch and I didn’t get the perfect month award. So far in July, I’m still meeting my movement goal each day, but I’m not expecting to make it to a perfect month this time either.

I did ride the side-by-side bike to the next town’s market again yesterday. It had been months since I visited the market, but the guy behind the olive stall did recognize me.

If we were having coffee, then I’d tell you all that I celebrated my birthday at the care home on Wednesday. It was a bit difficult. I’d had big plans for baking two cheesecakes and making a pasta bake for the entire home (20 residents). The cheesecakes were a success, but during the pasta bake preparation process, there were some bumps in the road. However, in the end both were delicious! Yes, even the fellow resident who always complains about food being too spicy, loved my pasta arrabbiata bake. I’d made it once before but had then deseeded the peppers. Not this time.

Caramel cheesecake
Pasta bake

If we were having coffee, I’d tell you that I’ve also been quite crafty recently, particularly early in the week. I crafted two small butterflies out of polymer clay (using a mold), to be turned into earrings later. When my one-on-one for the moment saw my other molds, she wanted to use a bigger butterfly mold that I hadn’t used in years. She proposed to use multiple colors in a marbling technique and chose eight all very different colors, including both yellow and purple. I know a little about color theory and said yellow mixed with purple becomes a horrible brownish color. My staff said that, if the butterfly turned brownish, she’d take it home and display it on her fridge. I ended up giving it to her regardless, but it didn’t turn ugly! I do take the credit for being careful not to overmix the colors, though in hindsight I might’ve undermixed them for the effect she wanted.

Polymer clay butterfly

If we were having coffee, I’d share that this crafty endeavor made me decide to order several other small earring molds. My sister had gifted me a voucher for one of my favorite clay supplies shops and I spent it on molds, cutters and also two new colors of acrylic paint. One of the paints was named sorbet and I had absolutely no idea what color that’s supposed to be. I now realize I could’ve had AI describe the image on the website, but I ordered the color and only discovered that it’s a kind of pink once it arrived.

If we were having coffee, I’d finally share that specialized client support contacted the behavior specialist and they’re now going to get back to me. When I found out they wanted to talk to the behavior specialist, I feared my care agency was going to hijack the entire process. I’m still not convinced that they aren’t, particularly since finding out yesterday that the team leader had informed the staff that I’m leaving before I’d even gotten a clear idea of the consequences of the meeting with the substitute behavior specialist in which she’d posed the question whether I’m in the right place here. It doesn’t help that staff are making all kinds of assumptions about what kind of place would be better suited to me and what I find most important. The truth is, my main requirement is that a future placement’s team, including higher-ups, truly wants to understand and accommodate my needs. I don’t want to have to move again in two or three years.

Crafting Lately: A Unicorn and Another “Cheer Up Frog”

Posted on by Astrid

Hi everyone. It’s nearly 11PM as I type this and I originally didn’t intend on writing a blog post today. Then, however, I learned that WordPress is intending on phasing out the classic editor (thanks Di for the heads-up) I almost exclusively use the classic editor, so I’m, well, quite a bit upset. Now I’m having to learn not only to write blog posts without using my Braille display, but also in the dreaded block editor. I could turn this into a challenge though and see what I can still do. For this reason, I’m writing a post in the block editor. And to make it extra challenging, I’m writing a crafty post, so that I’ll have to include images.

In truth, I haven’t been all that crafty lately. However, last week, a new staff was being oriented to me. The regular staff accompanying her is a great crafter, so I made use of this fact and decided to do polymer clay again. I started out making a unicorn. It’s the same style I usually use, but I did get compliments on the color combination, which I chose. The body is done using Fimo Soft in the color pastel vanilla and the horn, mane and tail are done using Fimo soft in the color pastel peach. The unicorn has a decorative flower on its side in the color pastel light pink, but I don’t think the picture captures it.

This unicorn, I did mostly with help from the regular staff while the new one was watching. Then, I made another little sculpture together with the new staff. I wasn’t too inspired, so chose the “cheer up frog”. For those who don’t know, I make frog figures for people who need a little cheering because they’re on sick leave or for another reason could use a little reminder of the good things in life. The Dutch word for “cheer up” is derived from the Dutch word for “frog”.

I added a decorative clover figure to its belly, but in hindsight could’ve gone with a larger size. My best friend also commented that the standard tropical green gets a little boring. One thing I did to challenge myself is to add seed beads to the eyes rather than my standard black dots.

I thoroughly enjoyed working with polymer clay. However, now that I’m sharing these on the blog, I’m struggling to put the blocks in the right order. Ugh, this is definitely a learning curve! And now it’s past midnight, so I’ll have to figure out whether I want to publish this post on Monday or change the publication date. And by the way, it looks like the images are somehow hidden behind my text. This definitely sucks!

March 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and that means I’m joining Natalie for her monthly wrap-up. March was a tough month. As I say this, I hear a little voice in my head saying I’ll never be happy anyway as I’m so negative. One of my staff on Sunday said I have nothing to complain about because I get regular support workers and my day schedule is followed. I still wonder how much of my dissatisfaction is indeed due to circumstances that can be changed, such as my day schedule, how much is due to the inherent nature of my being multiply-disabled and living in long-term care and how much is my attitude.

In any case, early in the month I heard that my activity-based day schedule would be taking effect on April 1. That’s tomorrow. Unfortunately, on the same day, the staff’s hours are going to change and this, even though the literal hours they are in the home won’t be cut, means my support will be cut a little. We’ll see how that goes.

I tried to adapt to the new support hours already and this was incredibly hard. I also tried to myself follow a schedule with more meaningful activities. This was partly successful, especially with staff who are already able to help me get more meaningful activities done. For example, last week, one of the staff helped me create a unicorn-themed card for a former fellow resident from the intensive support home, who had her birthday that day.

Thankfully, one staff, with whom until then I’d only been doing dice games and going for walks, herself took the initiative to ask a colleague to orient her to the polymer clay activity.

I have been cooking and baking more than I used to. For example, I baked so-called “healthy” brownies that I fully intended on handing out at the monthly local brain injury meet-up. They weren’t all that good though.

Later, I found out I had a Trojan on my computer that came with the recipe manager app I used to download random recipes off Facebook into, including this “healthy” brownie recipe.

Before I found out I had malware on my computer, I had been obsessing over the idea of cooking vegetarian curries. Most of the recipes, I got off English-language food websites like BBC Good Food, so I’m not sure I’ll be able to use them. After all, though my English is quite good, my staff’s might not be.

Last Saturday, I cooked a delicious cauliflower, tomato and chickpea curry. This recipe was in Dutch, by the way.

Now that I look over this post, I wonder what made the month so tough, given that I once again did more meaningful activities than I used to. I do believe part of the problem is the fact that I’m still not adequately supported when I’m struggling. I mean, highs and lows are to be expected even when you’re having the proverbial time of your life. When people expect me to have a positive outlook because “I have nothing to complain about”, that is horribly invalidating. Life in the care system isn’t great and it isn’t meant to be. I don’t expect to ever rate my days higher than a seven out of ten, but when staff do have this expectation of me, it’s incredibly frustrating. I’m hoping something can be done about this.

Of course, this was also the month I finally realized I’ll never have an okay relationship with my parents. It’s tough realizing I never experienced a proper bond with my parents and even tougher to know that no-one can replace it. However, I do think I’m more capable than I used to believe. I’m not sure how I feel about that.

Meaningful Activities #WotW

Posted on by Astrid

Hi all! No Weekend Coffee Share (at least, Natalie isn’t hosting) this week again. I love Anne’s Word of the Week linky for summarizing my week too. Maybe when Natalie hosts her coffee share again, I’ll do a combination of the two. That is, if I can figure out a word or phrase to sum up my week. This week’s phrase is “meaningful activities”.

This week was truly a good one overall. I’ll start with my spontaneous baking activity on Saturday. My staff and I had gone on a walk, but we didn’t want to stare at the wall for the rest of my long activity time slot, so she proposed we do a baking activity. I proposed to make caramel blondies, for which I’d bought the ingredients a few weeks ago already to use with another staff, who however wouldn’t say when we could make them. The blondies were extremely filling but good. Next time, I’m going to cut down on sugar a bit and add some white chocolate on top. I served the blondies to my fellow residents in the evening. One of them asked for days after that, when she learned that I had some left over, for more “Astrid cookies”.


On Monday, my staff and I went to the institution townhouse for coffee. We didn’t have our wallets with us, so we couldn’t buy any of the treats they offered (the coffee is free). However, one of the people behind the counter offered us a brownie that wasn’t good enough to be sold to share. My staff had only a small piece and I had most of it. It was delicious! I had planned to eat the last of the blondies that day, but had two and besides, I was completely stuffed already. I decided to offer them to the two fellow residents who aren’t at the day center during the day either.

On Tuesday, the same staff was supporting me in the afternoon again and, of course, we reasoned we had to go back to the townhouse with our wallets to buy something this time. We didn’t fancy another brownie, but we did have a look at some of the handmade items on sale. My staff bought some tea and I bought a bag of rocky road chocolates. No photo in the townhouse, but I did take an interesting photo of the bag on my nightstand.

Then on Wednesday, like I shared that day already, I crafted a polymer clay dice for a staff who was leaving. Today, I also have been claying, because one of the staff who’s been here forever but with whom I’ve never done a clay project, wanted to learn. It felt good being able to do this activity even though it was in the morning and I was a little cranky.

On Thursday, the staff and I rode the side-by-side bike to Twello to buy some things. I bought raisins, pumpkin seeds, sunflower seeds and corn waffles. We also needed a new mixing bowl, since I’d found out earlier that the one we used to have had a large tear in it. The staff offered to pay for it with the home’s debit card, which sounded reasonable, since it was the home’s bowl that tore. Not that I have a mixing bowl, but well.

Yesterday saw another trip to Twello to go to the market. When we were at the townhouse on Tuesday, one of the institution managers was telling us that he’s going to campaign for the upcoming local election at the market on Friday. I didn’t see him at the market, but I did get to talk to two other parties’ campaigners, both of who gave me some seeds to plant. I’m having to think on where to plant them, as my little yard has no flowerbeds.

Overall, this week was truly filled with meaningful activities. Since my new day schedule will (hopefully) take effect on April 1 and I’ll then be having two weekly cooking or baking activities, I’ve been looking at things to make then too. My wife inspired me to look into vegetarian dinners. Not that I’m a vegetarian or ever plan to be, given that meal delivery service meals suck even more without the meat than they do when it’s included. However, when I prepare the meals myself, I’d love to look at ways of adding flavor without meat or poultry. The idea is that usually I won’t have to cook for the entire home, so I can experiment without considering my fellow residents’ preferences.

A Good Mood

Posted on by Astrid

Hi all on this rainy Wednesday. I just found Esther’s writing prompt for this week, which is “mood”. Since I’m in a pretty good mood right now, it feels appropriate to write about it.

Yesterday, I had a meeting with my support coordinator and the behavior specialist who’s filling in while my home’s regular one is on maternity leave. As regular readers of my blog might know, we’re in the process of designing a new, activity-based day schedule for me. Initially, the draft didn’t appeal to me, because for one thing I’d wanted it to include time for me to have a cup of tea in the living room later in the evening. As those who’ve followed me for a long while will know, I introduced this cup of tea last summer and it helped me through a dark period. Of course, I’ve mentioned more than once that if a cup of tea is the only thing to lift my mood during a day or even week, that’s not really all that good. I mean, yes, it signifies that I’m not majorly depressed, but it isn’t particularly a sign of good quality of life.

My support coordinator yesterday told the behavior specialist about my daily positives and negatives, which I’ve been sending out to her and my assigned staff on a weekly basis. She mentioned that my positives usually include activities that have meaning for me, such as crafting, cooking, baking or the like. My negatives usually involve situations in which the staff don’t adequately support me based on my needs of that moment, such as when they place too much responsibility on me.

Yesterday, I for the first time in a while had a day in which I didn’t see any negatives. When I wrote in the Gratitude app in the evening, I even rated my mood as “good”. Not “great”, but I don’t expect to feel great. I usually rate my daily moods as “okay” at best.

I listed several positives yesterday too. One was my having made another batch of homemade granola. This takes only about half an hour total, but it significantly lifts my mood to make it.

Similarly, on Monday, we had twenty minutes left of my long activity time slot in the afternoon after having gone on a walk and having had coffee at the institution townhouse. My staff initially proposed we play a dice game, but I suggested we try making a simple bracelet. My staff questioned whether we’d have enough time to finish this, but I challenged her by saying we could at least try. Usually, I’m the one suffering from inertia because I fear we cannot finish an activity within my allocated time slot. That’s one reason I proposed doing a more activity-based day schedule, of course including approximate times for the activities. Anyway, guess what? We finished the bracelet on time!

Today, if nothing major happens to diminish my mood, I’ll also have a day with no negatives. This morning, I started off by feeling a bit stuck by fear of there not being time for an activity. Thankfully, I pulled myself through it and guess what? I made not just the one thing out of polymer clay I’d wanted to make, a rolling dice for a staff who’s leaving and with whom I used to play dice all the time. I also started on a project for a staff who’s just become a father. Of course, since the dice had to be painted, I didn’t finish it right then, but I did in the afternoon, just on time for the staff’s goodbye.

My support coordinator is definitely right that meaningful activities are what help me get in a good mood. Isn’t that normal though?

#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.

January 2026 in Review

Posted on by Astrid

Hi everyone on this last day of the month. I’m joining Natalie for her monthly wrap-up. I started the month with optimism, but as I write this post at nearly 10PM on the 31st, I’m struggling to remain hopeful that anything will ever get better. And is it is, life is a battle.

I fully intended to experience more in the creative and culinary departments in 2026. This was not a total failure in January, but I didn’t start off the year with the bang I’d secretly hoped for.

I did create a few things out of polymer clay this past month. I also crafted a few new bracelets and a necklace. My last crafty project, however, was over a week ago. I created a crocodile out of polymer clay. No picture, as I haven’t even baked it yet. I did make plans with one of my staff to finally create the standing unicorn sculpture I have been meaning to create forever. Let’s hope it doesn’t just remain a plan.

I also didn’t cook a main dish even once. That’s sad, but on the other hand, I did manage to bake a few things. Most recently, yesterday, I baked granola. I ate it this morning with my quark and it was delicious!

In the blogging and general writing departments, the beginning of the month was also a lot more successful than the last couple of weeks. I once again gave up on #JusJoJan pretty early on and only managed to do my Morning Pages for a few days. I do however still have a streak going on in Day One, my preferred journaling app. Granted, I only write some snippets in response to a daily template, but oh well. I still like the Gratitude app, but don’t use it as faithfully as I’d intended. Then again, I realize that pressuring myself to write everyday, isn’t helping my joy.

In other news, none of my staff nor me have heard from the Center for Consultation and Expertise (CCE) yet. On top of that, the behavior specialist went on maternity leave a few weeks ago. She has someone subbing for her, but I doubt this has been communicated clearly to the CCE. Even if it has been, I sort of believe the consultant gave up on me when she got the impression my quality of life is okay.

I realize my support coordinator and assigned staff are well-meaning and really want to help me improve, but I get the impression part of the team doesn’t believe that I deserve or need anything to change. I’m still haunted by the words of my intensive support home assigned staff. She believed that, because of my attitude, there was no way I would ever be happy anywhere. This might be partly true, though it’s not because of my attitude but because living in a neurotypical world as an autistic person is hard. However, just because I’ll never be perfectly happy, doesn’t mean no-one should try to improve my situation. Then again, maybe I’m just one giant nagger of a person.