Reading, Watching and Listening Lately (September 2, 2024)

Posted on by Astrid

Hi everyone. I originally intended to do a reading wrap-up, but then decided that I want to include things I’ve watched or listened to as well. I hope that means my post is still welcome with It’s Monday! What Are You Reading? (#IMWAYR). I’m also joining Bookish Bliss, Musings and More.

Reading

I said this a few days ago already when writing about my love of memoirs, but I recently started reading a book by a relatively new foster care momoirist. The book is called Jacob’s Story and is written by Louise Allen. I think that title is horribly unimaginative, but the story is good. Louise mostly writes from her own perspective, but the prologue parts are written from other people’s perspectives.

I’m also reading a children’s book, Shamrock’s Seaside Sleepover (Unicorn University, #3) by Daisy Sunshine. The first two books in the series, I finished in one sitting but I apparently didn’t feel as much in tune with my inner child when first picking this one up.

Lastly, I’ve been diving deep into the Enneagram again by reading The Complete Enneagram by Beatrice Chestnut. I’m not a Christian, so most Enneagram books don’t fully speak to me as they’re Biblically-based. I still, as a spiritual seeker, find some elements to be useful though. However, this book is totally accessible to people of all spiritual or religious walks of life.

Watching

I don’t currently have a subscription to any streaming services except for YouTube Premium. I also haven’t watched anything of note on YouTube recently.

Listening

First off is the podcast The Art of Growth. I listened to an episode published some months ago in the series Nine Love Languages, specifically the one on type 4. This was also what got me into reading Chestnut’s book.

I also am a lover of true crime podcasts. The episode of the podcast Cold Case Files I listened to recently had me totally chilled to the core. It’s called The Perfect Murder.

I usually listen to podcasts on the app Downcast. I used to love Overcast, but they stupidly revamped that app so I no longer use that one. Besides, though both apps are in English, only on Overcast does VoiceOver recognize that, which is a drawback since it then starts reading the titles of Dutch-language podcasts with a strong English accent. I’d rather have it the other way around, as on Downcast. Both apps will let you manually add podcasts from a URL, but both have a search feature too, through which I found the podcasts I mentioned.

Play Therapy #SoCS

Posted on by Astrid

I had my first play therapy session on Wednesday. That is, I used to have play therapy when I was in elementary school. That was nearly 30 years ago though. Yikes, how time flies!

Anyway, I only had four sessions back then before the school holiday and apparently those were either enough or my parents didn’t consent to more play therapy. Not that they were paying, but oh well. My parents were very reluctant to agree to these first sessions anyway, because they were suspicious of anyone in the helping profession, including the play therapist. I wonder why, since the goal of therapy was that I not get angry as quickly anymore. I back then denied getting angry much at all. However, I did play with toy weapons all the time, threw out the purple-haired dollhouse figurines because people don’t have purple hair and tried to overflow the water tray. That might have been telling. Or not, since I don’t know whose initiative the toy weapons were.

I hated play therapy though, because I had to go to it during my favorite subject in school, biology. I wonder honestly what the point was.

Same now. I was initially told, back in February when I had the intake interview for therapy with two different therapists, that the type of therapy I’d get was called something like “differentiation therapy”. I filled in what I thought this meant and behaved in a way that I thought was consistent with this. I thought that the goal is to learn to identify different feelings, so this Wednesday I constantly named the attributes of the objects I played with. The therapist did note that I was adamant about which types of play-doh I liked or didn’t like, but she didn’t write anything about me constantly saying, for example, that the PlayMobil® figurine was giving its companion its left rather than right hand, etc.

I’m pretty sure I was trying to show off with this behavior. I’m now scared she’s going to think I’m far more capable of identifying feelings than I am. Or think I am. Or whatever. I hope we’ll get something out of play therapy this time around, unlike back in 1996 when I was ten.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt is “school”. I interpreted it loosely, because I really wanted to write about play therapy. I’m going to write an actual post on my first session later.

Memoirs and Biographies

Posted on by Astrid

This week, there are many interesting prompts for the Writer’s Workshop. I am still thinking I might write on a different prompt tomorrow, but usually I don’t get to it. Today, I’m choosing the prompt about memoirs, biographies or reference books. They are, after all, my favorite genre to read.

I was not an avid reader as a child. Still am not a voracious reader, but I did discover the love of reading through memoirs and autobiographies. When I was in my late teens, I briefly was a member of the UK’s national library for the blind. They sent me Braille books. Yes, the clunky hardcover volumes (often eight or more per book).

I usually chose memoirs. Among my favorites were Planet of the Blind by Stephen Kuusisto and Emma and I by Sheila Hocken.

The first is an autobiography by a person blind from the same eye condition I have. If I’m correct, Kuusisto had some vision as a child but lost it later on, like I did too.

The second, which is the first in several books, talks mostly about the author’s experience of getting a guide dog.

I eventually got kicked off the library service for losing two volumes of a book, I’m not sure which one, in the mail back to them. However, this experience is probably what got me to love memoirs and autobiographies.

I currently often read foster care memoirs. My favorite authors are Casey Watson and Maggie Hartley. Cathy Glass is good too, but she stopped writing.

I recently discovered a new-to-me foster care memoirist, Louise Allen. That’s not entirely correct: I had heard of her a while ago, but because her books have horribly nondescript titles like Jacob’s Story, I didn’t fancy reading them. Now I am currently reading Jacob’s Story and think it’s fascinating. I must say though that the book is really a crossover between fiction and memoir, since the author writes from perspectives other than her own too. That makes it all the more intriguing, but I’m not entirely sure the books would count as memoirs.

Daily Habits I Already Do That Improve My Quality of Life

Posted on by Astrid
Daily writing prompt
What daily habit do you do that improves your quality of life?
View all responses

So many times, we think about the habits we could add to our daily routine to improve our quality of life. I at least do and then the only thing I do is make a list of them, but I don’t actually add most habits to my daily routine. I must admit, there’s very little I do literally everyday. This, however, is a nice reminder to look at the tiny things I do (almost) daily that improve my life.

  1. Get up at a reasonable time. I used to be a big one for lie-ins until late morning or early afternoon. Now though, I always get up between 8AM and 8:30AM. Yes, also on weekends. I sometimes go back to bed after breakfast for about half an hour, but I consider that my chill moment rather than me needing the extra sleep.
  2. Eat breakfast. I sometimes skip lunch or dinner, but I never skip breakfast. This hasn’t always been the case. Like, when I was a teen usually the first thing I’d pop into my mouth would be a candy bar or two from the school vending machine. Even when in the mental hospital, I’d often not wake up until mid-morning or later and would skip breakfast.
  3. Brush my teeth. This is another one that hasn’t always been this way. Like, in the mental hospital I’d skip toothbrushing more often than I’d actually do it. The staff thought that I just didn’t want to brush my teeth and,, since I had a borderline personality disorder diagnosis, this was considered “my choice”. However, I struggled with the feel of the manual toothbrush, the taste of toothpaste and I’d often simply forget to brush my teeth.

    Now, I get reminded to brush my teeth and my staff supervise me. Though I haven’t found a solution to the toothpaste issue, using an electric toothbrush helps a lot already.
  4. Go for a walk. Or several. This is something I don’t literally do everyday, but 99% of the time, I go for at least one longer walk.
  5. Call or text my spouse. Social interaction helps improve quality of life too, so I include this one. I sometimes am so busy with my morning activity that I don’t text my spouse until early afternoon, but not a day goes by when we don’t interact.

Looking at this list, most of these habits I do in the morning. That’s so interesting, since I consider myself a night person. Things I do in the evening that improve my life, however, aren’t usually literally daily habits.

If You Aren’t Prepared For an Imperfect Child…

Posted on by Astrid

Yesterday someone on Reddit’s Childfree sub asked why many parents-to-be have this idea that they’ll get the perfect child. You might say that having dreams for your unborn child is normal, and it is. Having this clear-cut image of what your child will (that is, should) achieve in life, is not.

Of course, there are thankfully many parents who are able to adjust their image of their child if (or rather, when) said child does not conform to their initial expectations. My parents, unfortunately, are not among them.

Like I’ve probably shared on this blog before, when I was a baby and sustained a brain bleed due to premature birth, my parents were concerned for my quality of life. This is more or less normal, although it wasn’t back in the ’80s. In fact, the doctor flat out told my parents not to interfere, since they were keeping me alive period. I am forever grateful for this, despite the fact that the same doctor admitted in 2004 that he sometimes meets former preemies he’d been keeping alive that he now thinks of: “What have we done?!”

At that time, I thought he would not mean me. I was still passing for “just blind” and, though blindness is considered a major disability, it’s one that by itself does not prevent someone from living independently and going to university.

That was the exact same reason my father, when talking about euthanasia of severely disabled babies in 2006, didn’t mean me. He did, however, mean those with intellectual disability and those with severe mobility impairments (the case at hand involved a baby with severe spina bifida). And I’ll never forget that he added to his statement that he didn’t mean me, “because you’re training to live independently and go to university”. As you all know, that didn’t work out.

My parents did find a workaround to the problem of my not being the perfect child they’d envisioned: they decided that my landing in the mental health system and now in a care home for those with intellectual disability, is my choice rather than a necessity. I haven’t fully processed all the ways in which this attitude, which some of my care professionals took over, has impacted me. It hurts though.

Now back to the idea of a perfect child. Even when disability isn’t involved, a child is their own unique individual, with their own strengths, weaknesses, wants and needs. When a parent decides that their child should go to university at eighteen even though they are still in Kindergarten, like my parents did, that doesn’t just impact a disabled child. It impacts any child for whom for whatever reason university isn’t the best place to go at eighteen. Such as, for instance, any child with an average or even slightly above-average IQ. Or any child that is more capable of practical jobs than of academic ones. And any child who, God forbid, doesn’t want to go to university.

If you aren’t ready for a disabled child, a child who isn’t a top achiever, a child who might I say has their own personality, by all means don’t become a parent. You don’t know what your child will be like, after all. Having dreams is alright, but be ready to adjust your image of your child when the need arises. And for goodness’ sake, don’t guilt trip your child for being themselves.

I’m linking this post up with this week’s #WWWhimsy.

#WeekendCoffeeShare (August 10, 2024)

Posted on by Astrid

Hi everyone on this beautiful Saturday in August. I’m joining #WeekendCoffeeShare today. It’s nearly 10PM, so I’ve long had my last cup of coffee and my soft drink for the day. I, however, do have Kinder Country candy bars in my cupboard, as well as lots of other candy. I bet I could persuade the staff to open the cupboard for you, but I can’t persuade them to brew you a coffee. Water will have to do. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. It’s mostly been quite warm with daytime temps in the mid to high 20s Celsius. We did get rain yesterday, but thankfully no thunderstorms. On Monday, the daytime high is supposed to be 32°C. I’m a warm weather person, but that’s too hot even for my liking.

If we were having coffee, I’d tell you I did a lot of walking over the past week. On four days out of the past seven, I got in over 100 exercise minutes according to my Apple Watch and I didn’t even go swimming this week, as the institution pool is closed now.

If we were having coffee, I would tell you that I’ve been struggling a lot lately. Part of the reason I’m showing it more might be the fact that I discontinued my morning dose of topiramate a little over a month ago, but it’s not (just) that which explains why I’m feeling like crap. After all, I’ve been feeling like crap for months. Make that years, honestly. I am realizing I never recovered from the blow to my self-esteem that was being more or less kicked out of the care home in Raalte. No, don’t interrupt that I wasn’t kicked out, since I know I literally wasn’t. However, when I realized the intensive support home was the nightmare it was and asked to be put on the waiting list to return (or actually return, since I asked before my room was filled up), I was told that some people had actually been glad that I’d left.

Why is this relevant now? Because, even though my current home is better than the intensive support home, I’m still feeling like I’m massively overloaded and my capabilities are massively overestimated when I’m struggling. This leads to staff not following my current support agreements, which even when followed to a T create just about barely manageable a care situation if even that when I’m feeling low (they’re okay when I’m feeling good). I know I said the same of my day schedule back at the intensive support home, but I only said so because my staff there had already decided I was a spoiled brat and wouldn’t stop complaining until I had full-time one-to-one. Which was almost correct before topiramate, but it wasn’t when I was on this medication. And it isn’t now either. After all, when I wished for near full-time one-on-one back in 2021, I didn’t realize its implications in care. I do now.

I realize I might need to go back on my full dose of topiramate (even though the evening dose is going to be discontinued next week too), but I don’t think it’s an excuse to keep everything else the exact same, since my needs weren’t being met before I discontinued this medication. In short, yes, the med might get me to shut up, or it might not, but either way something else needs to change too.

After many meltdowns, I finally wrote down my care needs in a document and E-mailed this to my assigned staff. I did water them down a little to make them manageable within the way my home operates, but not so much that I’d have every reason to still complain if the team decide to implement this. At the end of the document, I put in a brief summary of my care in Raalte (in early 2022, so when the team had already fallen apart) and asked for recognition of the improvements I’ve made since. I mean, I don’t seriously request to be moved now (I do blurt it out during meltdowns) and I wish I got half as suitable care as I got back then.

The support coordinator mostly making decisions about me, is on vacation now, but she’ll return on Tuesday. I hope I’ll have a meeting with her and the behavior specialist soon to discuss my needs.

If we were having coffee, lastly I’d share some positives of the day today. I realize this post was mostly negative, after all, but today was a pretty good day. Here are some reasons why:

  • My assigned staff was here this morning.

  • She brought me a cup of coffee right when waking me up.

  • Even though we were late finishing my morning routine, the staff coming for my morning activity came right on time.

  • I went for three walks today.

  • I had a waffle with forest fruit jelly, powdered sugar and whipped cream on it with my afternoon coffee. And a macaron in the morning. Sorry not sorry, dietitian.

  • I was able to ask the staff who did my afternoon activity with me, whether she’s leaving (which I thought because I’d seen her with a client from another home) and thankfully she said no. I am proud of myself for up front asking her rather than getting distressed.

My Medication Musings: Topamax

Posted on by Astrid

Hi everyone. I had a med review today, which prompted me to write a post in my series discussing the various medications I’ve been prescribed. Today’s med review mostly concerned topiramate (Topamax), so I’ll write about that.

Topamax is an anticonvulsant usually prescribed for epilepsy. It has also shown effectiveness in treating migraines. How exactly it works is not known, but it does in these cases, although it’s not the first choice of treatment for either epilepsy or migraines.

I have neither epilepsy nor migraines. Besides, the highest dose of Topamax I ever took, 75mg/day, is far lower than the effective dose for these conditions. The reason I took Topamax is because it is also believed to help with PTSD-related nightmares and flashbacks. The way my psychiatrist explained it to me back in 2021, it might even lower my general distress level slightly. Well, it didn’t.

Topiramate can have significant side effects, including cognitive impairment, tingling in the hands and feet, and others. On 75mg, I experienced slight tingling, but I honestly don’t know whether I ever had any other side effects. I do have quite horrible tremors in my hands and legs, but these could be from any of my medications or from something unrelated altogether, although my doctor didn’t say what.

I, after some tweaking, eventually settled on a dose of 25mg twice daily. I never really questioned its effectiveness until I was wanting to taper another medication, Abilify, about two months ago and my prescribing physician and I reviewed all of my current psych meds. I said that none of my meds except for my antidepressant, Celexa, seemed particularly effective. The doctor then decided I could discontinue my morning dose of Topamax.

Today, I had a review. Though I have been a bit more distressed lately than usual, this could have many causes, including fellow clients being in distress more than usual too. Furthermore, I don’t experience an increase in nightmares or flashbacks. I admitted that most of my flashbacks are emotional, in the sense that I get dysregulated when triggered rather than having a visual reliving. I’m not sure whether these have increased.

When the doctor asked me what I wanted, I was clear: to discontinue my other 25mg of Topamax as soon as possible. This will happen in mid-August.

I am, honestly speaking, also guided by general principles in addition to personal experience: I learned about a year ago that a then recent systematic review had disproven the effectiveness of topiramate for PTSD-related symptoms.

Share Your World (July 22, 2024)

Posted on by Astrid

Hi everyone. I haven’t touched this blog in over a week, but thankfully have been doing okay. Today, I’m joining Share Your World. Here goes.

1. When you retire (or when you retired) do you have a picture of a small cottage with a white picket fence outside in a quiet village or something similar?
I honestly wasn’t fully sure at first what Di meant with this question. Do I have a picture? No. I have just one physical picture in my home and that one is of myself. Oh wait, she meant whether we envision ourselves living in a small cottage blah blah. Well, I for one don’t. I’m not technically retired, in that I’m not of retirement age and, since I never worked, I still consider that age (which by the time I reach it is probably mid-70s) the cut-off point for retirement. I don’t honestly envision myself ever living in a small cottage. In fact, I’m pretty sure I’ll live in a care home forever.

2. What do you associate with school dinners (apart from school of course)?
I envision another post in the making, as I can talk up a storm about school lunches. We didn’t get a cooked meal at my schools. Well, I did a few times when I’d be having after-school activities. I remember one such meal, a dish called “hete bliksem” in Dutch, which is basically a stew of mashed potatoes, apples and bacon. I detested it!

3. Can you play a musical instrument?
No, not at all. I took lessons learning to play keyboards at the training center for the blind when I was 19, but really didn’t get beyond the absolute basics. I have forgotten all of it since. Like I’ve also probably shared before, I took a few guitar lessons when at summer camp in Russia in 2000, but it took me the whole first lesson to figure out what the instructor, who spoke only English and Russian, meant by the “strings”.

4. What made you smile today?
My being able to teach one of the student staff here about care profiles and him appreciating my “lesson”. Care profiles are the care packages and associated budget each client in long-term care is allocated. I really loved perseverating on a topic I know a lot about without it personally affecting me at that very moment (because the student staff isn’t the one making decisions about my care).

Another thing that made me smile today is being able to describe the above image, which Di used for the optional gratitude section, directly from the web through my screen reader. I think I somewhat agree with the sentiment expressed in the quote too. At least, in my case, life may not always get better, but I do get to experience good days at every age.

#WeekendCoffeeShare (July 13, 2024)

Posted on by Astrid

Hi everyone. I’ve once again not been blogging, but this time it’s not because I’m struggling. Well, I still don’t feel the greatest, but the main reason I haven’t blogged is that something else has caught my attention. I’ll talk about it in a minute. Want a coffee? I’m joining #WeekendCoffeeShare once again. It’s past 10PM, so no coffee for me, but since this is a virtual get-together, you can have whatever you like. Let’s have a drink and let’s catch up.

First, if we were having coffee, I’d share about the weather. It’s been all over the place. On Tuesday, it was hot and humid with a daytime high of 30°C. Then we got this giant thunderstorm. Wednesday and Thursday were still okay with daytime temperatures of around 22°C. Yesterday though, it was not just raining all day, but it was freakin’ frigid with a daytime high of 16°C. Today is slightly better.

If we were having coffee, I’d tell you that, despite having my new Apple Watch wristband, I didn’t meet my movement goals each day this week. I blame the weather. I thankfully no longer care as much as I used to and can sit back and relax every now and again rather than having to keep up with my activity rings. I did try to walk each day (except for yesterday) and went swimming on Thursday too.

If we were having coffee, next I’d tell you that, yesterday, I went to an Eye Association meeting for young people who are blind or visually impaired (and a few who have an eye condition but can still see quite well). I originally thought I’d be too old to qualify as a “young person”, but the target age group is 18-45. I had a good time, but towards the end got quite overloaded. I had a near-meltdown when the taxi driver called me but I couldn’t hear him over the noise in the cafe in which the meeting was held. I for a bit thought I upset the entire group and wouldn’t be welcome anymore, but thankfully it wasn’t this bad according to several people.

If we were having coffee, lastly I’d tell you all about my latest obsession. I originally wanted to write a separate post about it on Thursday, but got distracted by the actual thing. It’s learning Spanish on Duolingo. I’m currently still at the early A1 level of proficiency. My spouse and mother-in-law have both been learning Spanish on this app for several months. What got me into it though was a conversation in a Facebook group about language learning. Some people said Duolingo isn’t always correct, but I’m not sure whether they were referring to a specific language. I can see why though in a way, as for example early on in the Spanish course, you’re learning the word “elegante”, which Duolingo claims translates to “elegant”. Now I’ve never heard an English-speaking person use the word “elegant” in everyday conversation. I honestly couldn’t care less though, as if I ever get to a point where I can actually talk in Spanish outside of the app, I’ll teach myself the finer details of conversation.

#WeekendCoffeeShare (July 6, 2024)

Posted on by Astrid

Hi everyone. Today, I’m joining #WeekendCoffeeShare. As I start typing my post, I’ve just had dinner, but I probably won’t be finished with my post until after my evening coffee, as I’ll take a break from writing for my evening activity time slot. In case I am able to offer you a virtual coffee – which I will anyway, since it’s virtual -, I will offer you a stroopwafel biscuit with it too. I bought those at the supermarket this afternoon, because the staff ordering groceries this week either forgot to order large cookies for the weekend or thought they’re bad for our health. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d moan about the weather. It’s been rainy and chilly most of the week with daytime temperatures barely reaching 20°C. On Wednesday, the daytime high in fact was as low as 16°C.

If we were having coffee, next I’d share that I tore my Apple Watch wristband in two last week. That is, I pulled a tear into it when putting it on once, then when trying to put it on once more thinking I could still use another hole, I tore the entire thing in two, thereby dropping my Apple Watch. Thankfully, it didn’t break, but I couldn’t use it for a couple of days because of having no wristband. I mean, the wristband that broke wasn’t the original one, but somehow I must’ve discarded part of the original, since I could only find half of it.

I initially tried to order a new wristband and screen protector online, but the Apple Store would only let me pay by credit card and, though I did manage to order a screen protector off Bol.com, it was delivered to my in-laws’ house and hadn’t been delivered there yet by the time my mother-in-law visited me on Tuesday. I finally decided to just give it a try and order a wristband at another store and have it delivered to the care home. Like I’ve said a few times, the care home does have its own postal code, but I was originally instructed to address mail to the main building and add my home as second address line. Bol.com won’t accept second address lines and so I always used to have them deliver to my in-laws. Not anymore, since the wristband, addressed to the care home, arrived promptly and so did the screen protector I ordered that evening. Now I’ll have two screen protectors once my spouse brings the one that’s lying around at my in-laws’, but who cares? I have a working Apple Watch at last!

If we were having coffee, I’d tell you that the fact that it was raining plus the fact that I didn’t have my Apple Watch meant I didn’t walk nearly as much over the past week as I usually do. On Monday, I got pretty frustrated, because a temp worker happened to be assigned my two-hour activity time slot three times this week. Granted, he’s a regular temp worker here, but I had not yet trusted him enough to do anything other than play games and go for medium-long walks. On Monday I was anticipating two hours of dice games because of the weather, but thankfully it stopped raining eventually and we could go for a short walk.

Then on Tuesday, he told one of my most trusted staff that he’d love to work with clay with me. On Monday, the way he’d suggested we work with clay, it sounded as though he was just rattling off my activity list and I don’t do clay with staff I don’t trust to show at least some interest in it. I mean, they don’t need to know anything about polymer clay or even crafts in general, but if they’re the type to just sit around playing on their phone, a complex activity like polymer clay isn’t for them and me to work on together.

So on Wednesday, I decided to take the plunge and make a unicorn with him. At first, I used Cernit, which was way too soft, so I eventually gave up and chose Fimo. He asked to take the finished unicorn home with him to show his children, which I was happy to allow him to after I’d taken a picture, since I have many unicorns anyway.

Polymer Clay Unicorn

If we were having coffee, I’d tell you I started tapering one of my medications yesterday. It’s not the medication I originally wanted to taper, which was my antipsychotic, aripiprazole (Abilify). Instead, the intellectual disability physician suggested I discontinue my morning dose of topiramate (Topamax), which was supposed to help against nightmares and flashbacks. So far, I’m not noticing any difference good or bad, but it’s still early days of course.

If we were having coffee, lastly I’d tell you all to come to my home tomorrow. No, not really, but we will have a barbecue here. The parents of one of my fellow clients organize it, so I decided to buy them some chocolate as a thank-you gift.