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.

Medical Appointments #WotW

Posted on by Astrid

Hi all. This week has once again been quite stressful. I mentioned several reasons already in my post on Thursday, but with respect to those, I still have hope. Unfortunately, I did get some bad news from the intellectual disability physician I saw yesterday. I also am due to get bloodwork done because my irritable bowel syndrome symptoms seem to have gotten worse. Fingers crossed this is nothing serious.

On Monday, I attended the monthly brain injury meet-up. It was good. I do struggle to fit in though, with me having acquired my brain injury shortly after birth and with my not having answers as to why things seem to be getting worse. I did get some answers on Friday though.

On Wednesday, I saw my GP’s nurse practitioner for the IBS symptoms. They seem to have eased a little since then, but as with everything functional medicine, they ebb and flow. I hope nothing else is going on. I mean, it’s been nearly 14 years since I got the IBS diagnosis. Back then, when I had a colonoscopy, my wife was worried about cancer, but I reassured her hardly any 26-year-old with no family history of cancer gets colon cancer. Now thankfully I’m still young for that at 39, but I do know all the warnings about going to your doctor if your IBS symptoms start or change when you’re over forty. Add to that the fact that the intellectual disability physician considers me part of the aging population and I’d rather be wrong in a good way than missing something that turns out to be dangerous.

On Thursday, I had a visit from the occupational therapist about my tremors. They’ve been getting worse, as has my mobility impairment. I also feel like I’m experiencing cognitive decline. The intellectual disability physician had referred me to the OT because she’s clueless what to do about the tremors and yet doesn’t think it’d help to send me to a neurologist. Two weeks ago, the OT had given me a weighted wristband to try, but it didn’t work at all. She’s not sure what will.

On Friday, like I said, I saw the institution intellectual disability physician. I came into her office rather upset because of the OT appt on Thursday and because I felt like the doctor was not taking me seriously about the tremors. I asked her up front to explain what they are and why it wouldn’t help to send me to a specialist. The explanation I got was roughly the same one she’s been giving me for years, but harsher: because of the brain bleed I sustained as an infant, I’m at risk of earlier decline compared to non-disabled adults. I know this is partly true from having attended meetings of other people with cerebral palsy, but 39 (or rather, early 30s, as I’ve been declining for years) is a bit young still.

However, she did admit that my psych meds, including for many years high doses of an antipsychotic, have left damage too. Unfortunately, it’s irreversible by now, so even though I’m at a much lower dosage of my meds than I was years ago, there’s no way to cure my tremors or stop the decline. The only glimmer is the fact that she reassured me I don’t have a neurodegenerative disease. That is, of course I do, it’s just not something that can be named (like Parkinson’s). In that sense, hardly a glimmer at all.

Since yesterday, I’ve been rather sad and angry. I was originally coerced into taking my meds because the psych hospital didn’t know how to handle my meltdowns and they were threatening seclusion. The dosage kept being upped for various rather unclear reasons. I mean, I was never psychotic and my depression wasn’t so severe that medication should’ve been the first course of action. But what did I know?

The worst is I’m still in the system. Not in the psych hospital, of course, but the institution is pretty much as oppressive, just in other ways. It all makes me feel rather upset.

I’m linking up with #WotW, with my phrase of the week being “medical appointments”.

Thankful Thursday (February 19, 2026): I Still Have Hope…

Posted on by Astrid

Hi everyone. Today is Thursday, so I thought I’d try to create a post focusing on thankfulness. It’s been a rough week with me having a zillion ideas of things to do but no way to put them into action. I’m still struggling with the lack of structure in my day schedule, which means I have no way of planning any activities.

That being said, I keep having hope. Sometimes I feel that hope is my enemy, in the sense that it’s the only thing keeping me alive and what if it’s idle hope? What if the powers-that-be are unwilling to help me create a more meaningful life and they’re just keeping me in the dark about it because they know things might take a turn for the worse if they tell me?

Let’s focus on gratitude though. Today, I cut up the bell peppers me and my fellow residents had as a side with our lunch. I also went shopping for groceries with a staff. I bought some ingredients for making smoothies and breakfasts, as well as a poke bowl I had for dinner today. That was good.

This staff used to work here until last summer and was one of my favorites. She occasionally still subs here. I feel a little guilty having been so vulnerable with her today as to show her that, in all honesty, I don’t feel my life is meaningful at this point. Thankfully, she did have her regular coworkers write down how much I’m struggling.

I also wrote an E-mail to my assigned staff and support coordinator this evening. My assigned staff is on sick leave again, but she said she’d check her E-mail regularly. I explained the thing I’m struggling with most again, ie. the fact that I experience a lack of meaningful day activities despite sufficient one-on-one hours. The most frustrating part is the fact that it’s not about budget or staffing, so that I honestly don’t see why I wouldn’t have gotten a more structured day schedule months ago.

My support coordinator said a few days ago that she’d get back to me about the issue on Sunday. I doubt anything significant is going to become of it, but the sliver of hope that things might improve, is keeping me going.

For now, what is also keeping me going, is actually thinking up ideas of things to do when the staff are more willing and able to help me create more meaningful activities. Here, I said “when”, not “if”. Does that mean something?

Feeling Love #SoCS

Posted on by Astrid

Hi all. Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “love”. I was immediately reminded of a moment, about seven years ago, when I learned of emotional development and learned that seven-year-olds can feel and understand complex emotions like love. I can’t say I don’t value people, but I have no idea what “love” feels like. When I told my wife about this, she was upset until I explained that it doesn’t mean I don’t consider her special. Maybe “love” is just not the right word for it, or maybe it is.

Now that we’re in the process of divorcing, I am the one feeling the most distress over the idea of not considering my wife my partner anymore. I wouldn’t say I’m very romantic, like I wrote last year in response to a WordPress daily prompt, but I’m the one out of the two of us who feels the most comfortable with romantic gestures, such as giving one another heart-shaped gifts. In fact, I feel slightly sad that my wife would prefer I no longer make “romantic” gifts for her.

Does this mean I feel love? Or is it just something I’ve rationally connected, like when my wife and I got married thinking this was the way to go if we wanted to show each other that we’ll always be together? I wonder about this many times: how much of my expression of my emotional experience is genuinely in alignment with my actual feelings and how much is learned as part of the process of growing up? In some ways, it doesn’t matter, as emotional development is partly learned in all people. However, what I mean is, do I actually no what I feel or am I just mimicking how I see other people label certain experiences?

In this respect, I am always reminded of a snippet in a book on autism. A mother had explained to her autistic son that he was feeling jealous when his sister got a doll and he didn’t. The next time he expressed jealousy, this time at his sister getting attention while he didn’t I believe, his mother again said he was probably jealous. The boy then replied that jealous is when his sister gets a doll. This is often how I express feelings too. Does it mean I love my wife because we’re on the phone for at least an hour everyday? Does love only count when I give her heart-shaped gifts? Can I love other people besides my wife? Does it, in this respect, matter if we were to stay married or now that we’re divorcing but will remain best friends? I honestly have no idea.

Ten Things I Hate to Love

Posted on by Astrid

Hi everyone. I’m joining Marsha’s 10 on the 10th linky once again. It’s been forever. Today, we’re sharing things we hate to love. You know, those things you secretly love but feel a little (or a lot of) embarrassment about loving. In no particular order, here are mine. I realize that many of these are not considered generally bad, but I’m choosing to write about things that I have cognitive dissonance about loving.

1. Tarot and astrology and the like. These are not necessarily weird per se, but I sometimes feel weird about loving them because I’m non-religious and grew up with atheist, strongly science-minded parents.

2. The Enneagram. Same as above, but with an added layer of it having pretty much been claimed by Christians. I’m not a Christian and one of the reasons for that is the fact that most mainstream Christians are openly queerphobic. I could, of course, call myself a progressive Christian, but then I’d not be playing by the rules of that religion, as indeed the Bible condemns homosexuality. I still read some Christian-based works and wonder whether that should be its own bullet point on this list. Anyway, I know that the Enneagram is not science-based at all, but I love it nonetheless.

3. Articles, blogs etc. about parenting and children. I don’t love these as much as I used to when I was in my late twenties, but I still find myself drawn to them. For someone who is happily childfree, this is a bit weird.

4. Scrolling online. I do it a lot and always feel bad about how it means my time has been wasted.

5. Gossiping. I don’t share as much info as I gather information that isn’t mine to gather. I honestly wouldn’t even call this something I love, but it’s something I do a lot and it’s quite distressing.

6. Online shopping. I love it, but it’s a pain to get things delivered here.

7. Lying in bed during the day. Again, something I do almost daily but feel bad about because it means I’ve wasted my days.

8. Junk food. I could write an entire list of things I hate to love that are food-related: candy, French fries, large cookies (particularly stroopwafels), etc. Rather, I’m grouping them into one item. As regular readers of my blog know, I used to struggle with disordered eating, particularly overeating and some purging. I’m so glad I no longer binge, but I snack way more than I should.

9. Nail-biting. And many other body-focused repetitive behaviors I won’t go into on my blog.

10. So many things that are generally thought of as more suitable for (young) children. Think stuffed animals, chapter books, kids’ bedtime story podcasts, etc. I could say it’s my alters (I have symptoms of dissociative identity disorder), but I’m not so sure that’s true.

#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.

This Divorce Thing Stirs Up More Than I’d Like to Admit…

Posted on by Astrid

Hi all. Earlier this evening, I started in a book called something like Bitchslap Journaling. It is a spiritually-based journaling guide. The original Bitchslap prompt is to write down what you desire, need and expect. The author advised readers to use tarot cards for further reflection.

My initial thought re my desire was related to my care. I desire to experience more, do more fun activities, finally create that standing unicorn…

Then I drew a tarot card on Labyrinthos: I got the Seven of Cups. Cups are about relationships and love. Off the top of my head, I can’t remember what the author of the Bitchslap journaling book said Sevens mean and my Kindle app keeps crashing, but it wasn’t pretty.

Today, my wife had a visit from a person to determine the value of our house because of financial aspects related to our divorce. The outcome of this assessment doesn’t change my opinion on financial matters, but it is yet another reminder that we’re truly divorcing.

Last Sunday, when my wife and I were talking about the divorce, I said I couldn’t care less about it. What I meant is I couldn’t care less whether we divorce or stay married, in that little has changed to make me want to divorce. I was pretty clear when we first got married that we wouldn’t be living together. The thought of living together did enter our minds about a month after we got married when a living place that I’d been on the waiting list for over a year for turned out not to be suitable for me. Regular readers know the rest: after years of constantly making up our minds about whether we wanted to live together or not, I was forced to live with my wife because the psychiatric hospital kicked me out. This is one positive of us divorcing for me: the care agency won’t be able to use my wife as an excuse to kick me out.

Other than that though, even though I know rationally that we never had the kind of relationship spouses usually do, this whole thing makes me feel distressed.

I don’t want to go into the details of why my wife and I are divorcing on a public blog. Suffice it to say that, like I said, we never had the kind of relationship spouses usually do. We were always more like best friends than lovers and that’s not going to change. Looking back, we should never have gotten married.

Still, my wife feels like my safe person and I fear that’s going to change once we’re divorced. The house is only a symbol of that. I know that if I showed up at her doorstep saying I was going to live with her again, things’d be much, much messier than they are now. Still though, it hurts to know I essentially signed myself up for a life in institutions and there’s no going back on that one. There I’m returning to my original desire before I drew the tarot card.

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.

#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.