#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”.

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…

My Hopes for 2026

Posted on by Astrid

Hi all! I’m publishing a second post today to share my hopes for the new year. I don’t call them resolutions and I honestly hardly look back at them over the year, but it’s somewhat fulfilling to notice that I did make about half of my hopes for 2025 happen indeed. In fact, when I was talking with my wife about the year 2025, I realized I’d done better than I had expected, contrary to what I said in my yearly review. Anyway, here are the things I hope to achieve in 2026.

1. Get in more and more varied physical exercise. I am pretty sure that this is going to be a hard one, because it looks unlikely that I can go to the gym regularly or go swimming again. However, there are other ways too, like yoga, pilates, etc.

2. Do more meaningful activities, such as cooking, baking and crafting. This was one area in which 2025 has been less successful than I’d hoped but more successful than 2024. I’m still hoping to make that standing unicorn sculpture I mentioned yesterday happen. However, even if that’s not going to happen, I hope to include crafting and kitchen-based activities in my day schedule regularly.

3. Focus on mindfulness and gratitude. I am finding that even a few minutes in the Gratitude app helps lift my mood. I honestly think this is because it’s something new, but I hope that I can keep up the mojo. I already started this habit in 2025 when I wrote the positives and negatives of each day and E-mailed them to my assigned staff. I’ll continue to do so this year.

4. Improve my wake/sleep schedule. Over the past six months or so, I almost always spent most of the morning in bed. I’d really like to change that. Today was good in this respect.

5. Write more regularly. I don’t just mean blogging, although I seriously hope to do more of that too. I mean, my blogging year was better than 2024, but 2024 was about the most disappointing year blog-wise. I hope to write more this year than I did last year. I also started doing Morning Pages again. I however don’t get up early for them, because I know that’s a recipe for disaster. Rather, today, I did mine after breakfast, when I used to hop back into bed.

6. Further taper my medication. I’m having another meeting with the intellectual disability physician, who prescribes my psych meds, next week. So far, I’m pretty sure I’m still able to further decrease my med dosage.

7. Stay relatively mentally stable. This is an almost obligatory item on the list, as I honestly think the above have covered all I can do to help myself along in this respect. Some of the contributing factors to my deep lows have been related to external circumstances. Now I wouldn’t say I have absolutely no influence on those, but it’s not like I’m all-powerful.

8. Stay true to my wishes and needs with respect to my care. This means, for example, that I will continue to assert my right to informed consent for all of my care agreements.

9. Expand my social circle. Like I shared on Monday, I fully intend on going to more meetings in 2026. At least one of those, the brain injury support meeting, is local. I also intend to go to the nationwide cerebral palsy day in April. I intend to go by myself. In previous years, I went with my mother-in-law, but I’m not in contact with her anymore. Besides, I am pretty sure that, now that I know quite a few other participants, being accompanied by her is a hindrance to my social inclusion more than a help.

10. Be more conscious of my food choices and eat more healthily. I stepped onto the scale yesterday evening and the number wasn’t pleasant. Now I do know that part of that is probably holiday weight and part is the fact that I’ve been moving less. Regardless of my weight though, I seriously hope to be making healthier food choices.

2025: The Year in Review

Posted on by Astrid

Hi everyone. It’s time for my yearly review. This year wasn’t exciting in any particular way. I’m not sure whether that’s actually a bad thing though. I mean, I didn’t decide to move yet again and that’s a good thing. Most of the bad parts of the year not being exciting are exactly that: it was incredibly boring.

That’s also what led to the most significant lows of this year: the fact that, for a while, an extra cup of green tea at 9PM would be my highlight of the week. I have, over the past couple of months, been able to make this cup of tea a regular occurrence, so in that sense things are improving.

When I looked at my hopes for 2025 a few days ago, I noticed most of them weren’t particularly ambitious. I mean, I was hoping to improve my crafting and do more cooking. I can’t remember whether I had already tried to ask ChatGPT how to build an armature for a standing polymer clay unicorn and, as such, whether this idea was behind that hope. If it was, I can safely say that I didn’t achieve this. I must say I haven’t improved my polymer clay skill much at all. I have, however, picked up jewelry-making again and my wife loved the necklace I made her.

I also did a lot more cooking than I did in 2024. It wasn’t as much as I’d hoped when the behavior specialist promised me early this year that when my one-on-one got approved, she’d allow for a weekly cooking activity. I am cautiously optimistic that this will change in 2026.

I had also hoped to find a physical activity other than walking that I could do regularly. No such luck. I’m not sure this will change in the new year.

Tapering my meds was one of the major successes of this year. I can’t remember what dose of aripiprazole I was on at the start of 2025, but I’m now down to 11mg a day and have also been able to completely go off my pregabalin. I also must say that I’ve been able to stay relatively mentally stable. Yes, I did have a deep low in July, which is once again down to the fact that I had been going through the motions for so long that life felt like I was not really living it.

This year was also the year we had yet another Center for Consultation and Expertise consultation. I haven’t yet found out what the consultant is going to recommend even though she said she was going to let me know by mid-December. I doubt it’s going to lead anywhere significant, but maybe I’m wrong.

Finally, this year was the year my wife and I were trying to figure out our relationship status. Over the summer, we were planning to get a divorce, but this eventually didn’t happen. We’re still unsure as to how to align the legal situation with our actual feelings for each other and it looks likely divorce will be on the table sometime within the not-too-distant future again. Thankfully, we’re both pretty sure that we’ll always be best friends.

One of John Holton’s writing prompts for this week is what letter grade we’d give 2025 and why. I’m clueless about letter grades, so I’m going to rate the year on a scale of 1 to 10 as is the grading system here in the Netherlands. My rating would be a 5, which is just about below-average. Things that would improve the grade I’d give next year, are mostly related to my having more meaningful activities.

No Reason for Alarm, Apparently #SoCS

Posted on by Astrid

Hi everyone. I’m pretty frustrated right now. This is in part related to the usual struggles with my day schedule, ie. the fact that the only thing that’s clear about it is when I have support and when I’m supposed to be by myself. I’ve explained a zillion times that I need my activities to be more structured but the staff keep saying I can’t do any meaningful activities when I’m in distress. This may be partly true, in that polymer clay, baking and cooking are harder for me to do when I’m in distress, but when there’s no clarity about which activities I’ll do, the sheer magnitude of the list I have to choose from, overwhelms me before I can even decide whether I’m in good enough a mental state to do such an activity.

Another thing that’s been bothering me, are my physical symptoms. I’ve had horrible tremors for a few years already, but over the past year or so they’ve steadily gotten worse. My institution’s physician tells me to distract myself when it happens because it’s probably in part stress-related. However, I can barely operate my phone or computer when my hands are trembling and all the activities that I can do on my own that would at least in theory distract me, involve my iPhone or computer.

Yessterday, the tremors were so distressing and also my leg was in a constant state of tension. The tremors mainly affect my right side, while the muscle tension was on my left side. I have mild cerebral palsy affecting mainly my left side, so it’s kind of understandable that I’d experience spasming in that leg. However, there’s no known explanation for the tremors. Yes, they could be psychosomatic, but they could also be due to medication (one of my various psychiatric medications), some kind of long-term effect of my cerebral palsy, or any combination of these.

Knowing that my doctor doesn’t see a reason for alarm, is somewhat comforting. At least there’s no reason for me to believe I have a neurodegenerative disease. That doesn’t mean the thought doesn’t creep up on me at times though. However, even when I am able to realize that I’m not suffering from Parkinson’s (not that my tremors are at all similar to those someone with that disease would suffer from), the tremors are still debilitating.

On Monday, the staff are going to ask my GP’s nurse practitioner about the symptoms yet again. My intellectual disability physician tells me to distract myself, apparently believing my symptoms are psychosomatic. I’m pretty sure the nurse practitioner is going to say the same. However, if only those telling me my symptoms are all in my head and due to stress, could help me lessen that stress!

This post was written for #SoCS, for which the prompt today is “alarm”.

Neurodivergence and Emotional Dysregulation

Posted on by Astrid

Hi everyone. On Monday, I listened to an episode of the Navigating Adult ADHD podcast. It was on emotional dysregulation and it’s been on my mind ever since.

I don’t have a diagnosis of ADHD, but have wondered for years whether my emotion regulation issues are “just” autistic meltdowns, whether I have borderline personality disorder like my psychologist in the psychiatric hospital used to believe, or whether something else is going on. So far, I haven’t found a satisfactory answer and, with that, I have not found something that helps.

I tried a ton of medications but none truly helped me, except for maybe my antidepressant. That is, obviously my antipsychotic did lessen my emotional outbursts, but it didn’t do so in a pleasant way. In fact, I only felt irritability or I felt nothing. That’s not emotion regulation but being numbed down too much.

I tried dialectical behavior therapy, which I still believe could’ve been helpful if the clinician hadn’t been so horribly invalidating. I mean, there’s quite a world between going along with every single emotion I describe without question (which I realize could be counterproductive) and telling me, albeit implicitly, that my entire way of experiencing things is invalid. I haven’t been involved with DBT for long enough to know whether it in itself is invalidating or whether it was just the clinician being judgmental.

In the podcast, the speaker described six ways in which emotional dysregulation can show up. I related to all of them, though some more than others. For example, my low frustration tolerance is truly debilitating. So is my inability to calm down. I literally still fret over things that happened at the intensive support home and these influence how I react to my current staff. My spouse and I also regularly fight over both of our (but more so my) inability to let go.

The things I relate less to, interestingly, are things I see as relatively “positive”. For example, I do get slightly over-excited at times, but not to an extreme degree. Then again, the fact that I don’t experience it to an extreme degree, is probably why I see it as “positive”: after mulling over negative things for weeks, I’d love something to get overly enthusiastic about. In reality though, finding a new hobby and buying all the “needed” supplies within hours, isn’t actually good for me financially. I just wish I’d experience that rush of excitement. Then again, when, rarely, I do, it often leads to even lower lows afterwards.

I’m joining in with #WWWhimsy.

#WeekendCoffeeShare (August 2, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s almost 10:30PM, so no more drinks other than water for me. That green tea I got a month ago has gotten a meaning of its own lately, symbolizing my lack of independence and self-determination. But I’m getting ahead of myself. Grab yourself a favorite drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been rainy most of the week and honestly less warm than I’d like it to be. I refuse to wear long-sleeved shirts in the middle of summer, but today, I almost regretted going out in just a T-shirt.

If we were having coffee, I’d tell you that in part due to the weather, I haven’t been as physically active as I’d have liked lately. Today, my spouse and I wanted to go for a walk but it was raining pretty hard so we turned around within five minutes. That was when I was out in just a shirt. I’m hoping I can still meet my movement goal on my Apple Watch today.

If we were having coffee, then I’d share that I was at our house today. My spouse got a new cat about six weeks ago and I hadn’t met him yet. His name is Caleb. Unfortunately, he hid under our bed as soon as I walked in the door and had to be dragged down by my spouse for me to be able to pet him.

We originally intended to cook dinner together or get pizza delivered, but since the weather didn’t permit us taking a walk and my spouse didn’t want to stay inside the house all day, we decided to drive to Apeldoorn. I needed a new jacket, after all. My old one, I’d bought seven years ago and it’d finally gotten damaged beyond repair in addition to being quite dirty. When my spouse asked me my size, I made a guess. It turned out the old jacket was several sizes bigger. Then again, back in 2018 I was at least 10kg heavier than I am now. I finally got a jacket with a size inbetween my original guess and the old one’s and it fits perfectly.

If we were having coffee, then I’d tell you that, as of yesterday, I’m once again a tiny step down with my medication. Specifically, I’m now on the absolute lowest dose of pregabalin. I was never on a high dose anyway, in fact having been on my start dose for years, but as it is in medicine, apparently going up is easier than going down. Six weeks from now, I’ll most likely be completely off of pregabalin.

If we were having coffee, then I’d share I’m still struggling. Part of it is the realization that my life is far from “normal” and the fact that I feel guilty about not accepting this reality. I constantly have my last home’s staff’s words in my head about never having a perfect day. I am also constantly thinking of ways in which my life could be even a tiny bit more meaningful.

If we were having coffee, finally I’d share that I did have some good moments over the past week. Like I said on Thursday, I have been quite active in the kitchen. I also on Thursday crafted another clay parrot.

The staff who’s leaving, took this one and the one we made last week home with her yesterday.

Tomorrow, one of my assigned staff is going to do my morning activity with me and we agreed to work with clay again. I have yet to think of some ideas for what to make. She wanted an elephant, but I’m not yet sure how to go about doing that.

#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.