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.

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”.

#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.

Janie Mac I’m Nearly Forty…

Posted on by Astrid
Daily writing prompt
What are your thoughts on the concept of living a very long life?
View all responses

Last Monday, I had a meeting with the intellectual disability physician who prescribes my psychiatric medication. The first thing we needed to discuss, was me tapering my antipsychotic. That’s going on, thankfully. However,I also had been complaining for months about increasing tremors in my right leg and hand, decreased mobility and more pain. Unfortunately, according to her, there’s nothing that can be done about these issues to make them go away. I mean, she’s referring me to occupational therapy, but it’s not like that’s going to lessen my symptoms. More like make them more manageable, I hope.

She says my symptoms are due to the brain bleed I suffered as an infant. She however added: “You’re getting older.” Ouch! I’m turning forty this year. That’s not old, or is it?

I’ve always thought that I wouldn’t live a very long life. I mean, my paternal grandma made it to 94 and, when I was a child, my parents thought I took after her. Now, not so much. My other grandparents all lived to be in their late seventies or early eighties. My father will be 77 next week and my mother will be 71 in April. Familially speaking, I’m not at risk of dying young, even though my maternal grandmother suffered from heart disease and diabetes for decades before her death.

However, I do have the brain bleed. Cerebral palsy in itself doesn’t limit one’s life expectancy. Autism, statistically speaking, does. And it’s probably due to my mental health that I won’t make it to old age. I’ve had more close calls in the last few years than I’d like to admit.

My wife and I recently had a discussion about who would go first. She doesn’t cling to life as much as I do, but I’m far more impulsive. I hope both of us will make it to old age and in relatively good health too.

The above song has been on my mind for a few months already. My wife and I have been together eighteen years, but oh well…

#WeekendCoffeeShare (April 19, 2025)

Posted on by Astrid

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

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

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

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

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

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

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

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

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

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

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

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

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

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

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

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

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

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

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

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

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

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

Tapering My Meds… in 2034?

Posted on by Astrid

Hi all! One of this week’s Writer’s Workshop prompts is to write a post based on the word “medications”. I will probably have another med review with the intellectual disability physician in a few weeks. The aim for me has always been to taper my medications. This will probably take until 2034 and this time my use of the year 2034 is only partially a joke. After all, when I said that “everything will be okay in 2034” and explained to the physician that I always say “2034” when I mean “never” (because of the fact that the book by this title is about World War III), the doctor didn’t understand the joke. She actually seriously said that I’ll be on the right med regimen by 2034.

Like I said, I’ll have another meeting with her to discuss tapering my meds in a few weeks I think. Although I’d really love to decrease my medication dosage sooner rather than later, I do realize that I’ve been struggling more than usual lately. I haven’t shared about this on the blog much, but over the past several weeks, I’ve had emotional outbursts almost every evening. Part of the reason is the fact that there were quite a few temp workers assigned to me. Thankfully, as of yesterday, it was agreed that the staff will no longer send unfamiliar temp workers to me. I am very happy about this.

However, I am also concerned that the temp workers might just be the reason my already irritable brain chose to act out. In other words, it could definitely have been the case that my latest med taper wasn’t all that sensible. For this reason, I have pretty much made up my mind that I will not take another step until January or so. That way, I’ll be able to give the new agreement about no unfamiliar temp workers a fair chance. All I can hope for is that, if I tell the physician I want a break, it won’t end up being an end to it all.

After all, I do still experience significant side effects from my medication, like what I think could be a movement side effect from my antipsychotic (significant tremors and twitches) and I don’t want this to end up being permanent. This is another reason I don’t want to seriously wait for 2034 to be off my antipsychotic. By 2034, I’ll be 48 and that’s too young for crippling movement disorders.