#WeekendCoffeeShare (December 6, 2025)

Posted on by Astrid

Hi everyone. Yesterday, I had tons of ideas on my mind on what to blog about but no motivation to actually write. Today, it’s the opposite. I’m joining in with #WeekendCoffeeShare even though I think I don’t have a lot to share today. I, as usual, had my last cup of coffee for the day about half an hour ago and am going to take a break from writing this post to have my soft drink and chips. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, it was chilly but not rainy with daytime temps around 7°C. Today, the daytime high was 10°C but it’s been raining all day.

If we were having coffee, I’d tell you that I was pretty active for most of the week, both by walking and one time by cycling to the next town just to have a purpose for cycling. I didn’t need any groceries and we only ended up having a snack, but at least we weren’t aimlessly cycling around.

Today though, I spent the entire day indoors and still need to dance or whatever to reach my movement goal on my Apple Watch. My streak for whatever reason is still stuck on 33 days even though I’m moving each day and it’s been stuck on 33 days for a month or so.

If we were having coffee, then I’d tell you that I had many plans over the past week but haven’t accomplished a lot. On Monday and Tuesday, I did create some Christmas decorations out of polymer clay. Yesterday, I attempted to bake cookies. They turned out okay but not great and the process was frustrating. Nonetheless, it was better than lying in bed or staring into space, which is what I’ve been doing a lot lately.

If we were having coffee, I’d cheat a little with the coffee share being about the past week, since there was none last week. I’d share about the meeting I had with the behavior specialist early last week. It went well. First of all, like I said, the “one chance” rule about orienting new staff got ditched. My assigned staff, who is in training to become my side of the home’s support coordinator now too, E-mailed me the new orienting plan yesterday and it looks pretty good.

We also discussed my day schedule. In the future, I’ll hopefully get more set activities. In preparation for this, my assigned staff created instruction cards for some of my activities, so that I can hopefully do more activities regardless of which staff is assigned to me. She E-mailed these to me too and I gave some feedback.

If we were having coffee, lastly I’d share that I’ve been having lots of memories lately. And by “memories” I don’t mean good ones. Yesterday, for example, I remembered the team meeting for my current home I attended in the summer of 2023. One of the staff, when I told them that I can’t prepare my own lunch, replied: “But you lived independently, right?”. I immediately got defensive, because yes, I technically lived independently, but I shouldn’t have. Yesterday when I was talking about this with my wife, whom I’d first met when living on my own in 2007, she told me more about how bad it actually was. Until a few years ago, I believed that, while I couldn’t cope, this was mostly a mental thing. In other words, I was falling apart mentally but could really care for myself if I hadn’t been so scared. Well, no.

It is sad to realize that part of the reason why I need so much care is lack of training in childhood, adolescence and to a lesser degree early adulthood. I’m still struggling with my parents’ reasoning that they couldn’t have taught me because I was too strong-willed and just didn’t want to learn. It may’ve been true that I didn’t understand why I had to learn something that caused me frustration, but then isn’t it the parents’ job to guide the child through their frustration? I’m honestly still struggling with this.

Brave Choices

Posted on by Astrid

A few weeks ago, I was in the mood for writing but didn’t know what about. I downloaded Google Keep on both my PC and iPhone and just started writing based on a prompt I saw on the See Jane Write website. I had never heard of this site. The prompts for the month of November were all two words long. The prompt I used was “brave choices”.

I doubt I’ve ever made a brave choice. Most of my major life choices were made out of fear or avoidance rather than courage. Either that or they were really other people’s choices I didn’t rebel against, or not well enough.

For example, my choice to live independently, wasn’t really my choice. I was pressured by my parents into saying this was my goal after completing independence training and, once everyone except for my parents agreed it wasn’t a realistic outcome, the pressure had increased to the point of being unavoidable.

Similarly, my choice to live with my wife, wasn’t really my choice either. She wanted it, but hadn’t realized all the complcating factors, like my substantial care needs. She had good intentions, mind you, thinking our love would conquer anything. It didn’t. Thankfully, I was able to make the choice to go into the care facility in Raalte before our relationship suffered irreparable damage.

If there’s one choice I made in my life that could be considered brave, it was this choice. My parents and former professionals would likely say this choice was made out of fear too. They might have been right. Maybe, if I’d been truly brave, I’d have been able to organize my own care whilst living with my wife. Then again, now that we live separately, neither of us wants to live together ever again.

I still wonder whether I could improve my life if I didn’t make decisions out of fear or avoidance anymore. I mean, the reason I rarely try out new skills of independence, is fear, namely the fear that my staff will always expect me to possess an ability I’ve shown once, as well as other related or even unrelated abilities. This fear isn’t unfounded, but it’s holding me back more than it should.

Like a Rolling Stone… #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday is “favorite place”. I am not a fan of traveling, so I have absolutely no idea what my favorite place to go on vacation would be. I did go on a postponed honeymoon in 2012 to the Swiss town of Zug and it was beautiful. That is, walking through the mountains was quite an experience. The town itself was full of top-notch expensive cars.

We haven’t been on vacation since 2014 and, though my best friend and I (my best friend currently still being my spouse, for those who don’t know) have discussed vacation plans, neither of us is keen on going anywhere, honestly.

I would probably be considered a homebody. Except, what is my home? My staff often refer to the care home as “home” when talking to me, but it still feels off. And though I have no plans of traveling to any exotic locations anytime soon (or ever, considering most truly exotic locations are not easy to get to for someone who hates flying), I wouldn’t consider my room in the care home to be anything close to a favorite place. Or maybe it’s my least hated place out of all. After all, I’ve never truly felt home anywhere. Not with my parents, not in independent living or with my spouse nor in any of the places in the care system I’ve resided in.

I guess I’m like a rolling stone. After all, I’ve never truly connected to any particular place. This feels sad.

Health Anxiety

Posted on by Astrid

Hi everyone. Today in her Sunday Poser, Sadje asks us whether we deal with health anxiety. Health anxiety is excessive worry about one’s physical health. People who suffer from it, interpret normal bodily sensations or minor ailments as a sign of serious illness, such as cancer. There are people with health anxiety who are constantly running to the doctor, but also those who bury their heads in the sand and worry in silence.

As for whether I myself suffer from health anxiety, I used to suffer pretty badly. I could be a mix of the head in the sand type and the running to the doctor type. When I was nineteen, I remember having pretty bad anxiety one night and concluding I had some serious thing going on. My sister was in my room trying to comfort me, but not being able to figure out why I was having the symptoms I was having (most likely, a panic attack), drove me crazy. I don’t know why I didn’t peruse Dr. Google, but I didn’t. The next day, I called my GP, who wasn’t fully comforted either, particularly when she learned I have hydrocephalus. Long story short, three weeks later I got the all-clear on my shunt from a neurologist, but I never figured out what those weird symptoms were.

I also had bad health anxiety when living on my own in 2007. I, being the type for objectivity, at one point purchased a talking thermometer, so that at least I could take my body temp. After all, my parents used to have a rule about staying home from school: if you don’t run a fever, you aren’t sick.

Thankfully, most of my health anxiety went away once I was admitted to the psych hospital. I still worried about my health sometimes, but it wasn’t significantly distressing. My health anxiety didn’t return once I was kicked out of the hospital to live semi-independently with my spouse.

One thing I struggle with, is knowing when a symptom is significant enough to go to the doctor for or even when it’s abnormal. I for this reason can go months with a symptom before I actually ask my staff to call the doctor.

Since owning an Apple Watch, I don’t freak out when its values are abnormal. Like, back when I first used it in 2022, my oxygen levels often were way below the minimum normal value of 95%. Now they are usually high enough and I have had them checked with an actual oximeter several times. I might’ve had sleep apnea back then, but then again my night-time breathing rate according to my Apple Watch is usually higher than average, not lower. In any case, I am not one to consult my doctor just because my smartwatch says I might be ill. Maybe that’s burying my head in the sand, but I do feel fine generally.

Gratitude List (December 1, 2024) #TToT

Posted on by Astrid

Hi everyone. It’s nearly 11PM as I write this. I feel motivated to write, but can’t really think of a lot to write about. However, a gratitude list is always good. I’m joining in with #TToT. It’s been forever! Let’s see what I’ve been grateful for this past week.

1. Inspiration to craft. I mentioned this yesterday too and have been claying again today. I also have many ideas floating around in my head.

2. A visit to a nearby market again. I got fried calamares at the fish stand. I also bought spicy olives.

3. The pasta salad with tuna we had yesterday. And the fact that it wasn’t used as an extra but as the main meal.

4. Sleep. I’ve been sleeping a lot over the past few days. Not always at night, but who cares?

5. Warm clothes. I’m nursing a cold, like I said yesterday, and, though I don’t have a fever, I do feel more comfy wearing warm clothes.

6. The fact that I managed to talk out a recent issue with a staff today. She tried to assign me a temp worker on Friday even though there were other options. It turned out she hadn’t fully understood the agreement.

7. The fact that I now feel at least a tiny bit comfortable with the new staff. With the latest addition to the team, I struggled a bit, but we had a good time on Thursday.

8. My mental state. I’m still experiencing anxiety on a daily basis, but it’s a lot less severe than it used to be.

9. Motivation to write. Like I said yesterday, this is a sign that my mood is improving.

10. The fact that I no longer live independently. I was reminded of the fact that I’m intensely grateful for this again this evening when my spouse called me because of stress related to our house. I feel a bit guilty for not being able to help, but at the same time I’m so glad I no longer have this responsibility, because when I did, it didn’t mean less stress for my spouse and it did mean significantly more stress for me.

Regrets

Posted on by Astrid

Hi everyone. Yesterday, Sadje asked in her Sunday Poser what regrets we have about not doing, being or having something in our life.

I could share that I regret not having finished college or not having lived independently longer, but I don’t. I mean, I know my “choice” to land in the psych ward caused me to be practically abandoned by my family of origin, but I wouldn’t have my spouse now if I hadn’t gotten myself admitted. In fact, I might not have been here to write about regrets, as I was actively suicidal at the time. You could argue that I wouldn’t have died anyway. Even if death weren’t the result of my continuing to muddle through, I would have more than likely caused irreversible damage to the relationships that matter. I honestly, after all, can’t believe my parents wouldn’t have abandoned me if I’d spiraled more seriously out of control. And I’m pretty sure, like I said, that my now spouse, whom I’d just met, wouldn’t have stuck by me then either.

This doesn’t mean there isn’t a voice in me that wishes I’d done some things differently. However, as long as I live, there’s always a moment to do things differently now. For instance, if I really wish I’d finished college, I could always enroll into an Open University program.

Likewise, I do sometimes wonder whether I could’ve been more independent if this or that about my life had been different. Then again, if I really want to be more independent, I can take steps, no matter how small, to achieve it. The proverbial deep end doesn’t work for me, since that was what I got when living independently and going to university. However, I can always take steps towards improving my life.

I, as many of you know, do regret having moved out of Raalte and into the intensive support home. That, now, I see as a lesson: I want to stay here at my current home, because even if it isn’t perfect, the grass isn’t greener anywhere else. Like one of my staff sometimes says, some places don’t even have grass.

I’m linking up with Senior Salon Pit Stop #338.

How I Coped With Losing My “Job”

Posted on by Astrid

Hi everyone. This week, one of the prompts for Writer’s Workshop is to write an essay titled “How I coped with losing my job”. I don’t do well writing fictional essays and have never had a “real” job, in the sense of a paid position or even volunteer work. I did, however, once “lose my job”, in that I got told the day center I went to couldn’t keep me there anymore.

This happened sometime in January of 2018 at my first day center with my current care agency. They had had me there for eight months, in two different groups, but when I was struggling to cope at the second group, they could no longer serve me or so they said.

I felt really distressed about this. The most frustrating aspect was the fact that they blamed me for no longer being suited to the center, while in reality, three new clients had been accepted into my group and no additional staff had been hired. I remember the reason they said it was me being the problem, not the new clients, was the fact that I’d been having meltdowns shortly before they arrived. Now I know that any anticipated change will cause me distress and that doesn’t mean I’m just a problem client. However, in hindsight, I’m pretty sure they wanted me gone sooner rather than later all along, for the simple reason that I don’t have an intellectual disability.

Thankfully, I wasn’t told to leave on the spot, but got time to find a new place. I initially had no clue how to, but did remember that, in 2010, I had been helped by the Center for Consultation and Expertise (CCE). I told the staff that I wanted to involve them again.

This was a bit of a hassle, as my community psychiatric nurse from the mental health agency said I’m far too high-functioning for the CCE. I applied nonetheless and got an orientation meeting in May of 2018.

In the end, I didn’t need the CCE for finding a new day center, but the consultation was what led me to accept that living independently with my partner wasn’t working and I needed long-term care.

I did feel intensely frustrated, like I said, at being “fired” from this day center. However, in the end, I don’t blame the staff, who were just powerless in the face of my challenging behavior. I think the manager, who didn’t look beyond my psychiatric diagnoses, is partly responsible. So was the psychologist from the psychiatric hospital, who more or less made the manager accept me on partly false premises.

Phones #SoCS

Posted on by Astrid

Today’s prompt for #SoCS is “phone”.

I’ve had an iPhone for just over seven years now. Before that, I had a sturdy regular cellphone. I once had the earliest model of a smartphone-like thing, a Nokia 6230i, but I could still only use it to make calls. I got it with my then new phone plan because I wanted to make use of a scheme by which cellphone calls would be charged landline fees. Remember, it was 2007, so cellphone rates were still very high and I didn’t have a landline. That is, I wanted to get one while living independently in Nijmegen but had just got it installed when I landed in crisis. I in fact had my home phone that I intended to use in my apartment with me when I was hospitalized.

The reason I could only make calls with a phone that was almost a smartphone, is the fact that it didn’t have MobileSpeak, the earliest excuse for a phone screen reader, on it and it couldn’t get it installed even if I wanted to. I’m surprised at how things have changed. Then again, I really shouldn’t be surprised. Life progresses, after all.

My current iPhone, I use for all kinds of things, almost like a handheld computer. That is, not actually almost, really, since I don’t even take my iPhone with me when I leave my room. I really want to do that more, so that I can take pictures when I notice something interesting. Like the rainbow my staff saw a few days ago. I really wish I’d had my phone with me then.

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.

February 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. I’m sharing this past month’s reflections again, as it’s the last day of the month. February is often a hard month for me and this year was no exception. I honestly feel quite hopeless as I write this post, even though I probably should be feeling cautiously optimistic. Let’s dive in. As usual, I’m linking up with #WBOYC.

During the first few weeks of the month, I shared some more concretely about things I wish would change about my care here at my current care home, only to be told nothing will change until after the summer at least. This caused me quite a bit of despair, honestly.

The contrast couldn’t be greater when I did experience exactly one near-perfect day last week and saw nothing about it in the staff’s records. When telling my staff about this, I got advised that maybe reading the log notes might not be a good idea after all. WTF?

It also looks like my staff are using my current mistrust, and the fact that I’ll likely develop trust in my staff very slowly, as an excuse not to have to improve my care. After all, yesterday my assigned staff said my level of trust is currently zero so any improvement is to be celebrated when I was calling him out on ways in which he and his coworkers are expecting too much of me.

Today, I had the intake interview for therapy at my care agency’s practice. I probably portrayed myself as an attention-seeking, childish, purposefully-dependent monster. The therapist who asked me the questions (there were two in the room, plus my home’s behavior specialist), kept repeating how feeling isn’t dangerous.

At one point, I was talking about how I sometimes trigger myself by looking up idealized care situations. She was like: “But you don’t need full-time one-on-one.”. I know. Then she went on to tell me that sometimes she feels bored and lonely when she’s at home alone, but nothing bad happens so she can stay home alone. She also told me I’m an adult. This somehow majorly triggered me and now I feel bad for being triggered because doesn’t that prove my former psychologist’s point of view? You know, the one who diagnosed me with dependent personality disorder and told me I needed a good kick in the behind to live independently?

Yet things did happen. I dropped my meds. I dropped glass on the floor. I fell of a kitchen stool. The housing association came by and told me I needed to pull away the weeds out of my backdoor path. And a thousand other things. None of these are serious things, except that I had no idea how to handle them so spiraled into panic. And there’s no point teaching me how to handle every tiny little situation that could go wrong. And for the record, sitting with the feelings won’t solve the problems either. Calling for help rather than spiraling into panic might have, but that didn’t seem to be her point. Besides, I cannot do that when I’m in a panic.

She did say that she doesn’t make decisions about my independence, but I feel very strongly like I am being asked to be the strong, independent, intellectual part of myself again.

The therapists ended up recommending a form of play therapy, but the play therapist who comes to the main institution is male and I’ll be alone with him. That’s not an option for me, honestly. They are going to look into finding me a female therapist. I hope they will, as the rest of what they recommended, though I did agree to go forward with it and have my first appt on April 3, seems a bit off. They recommended psychoeducation on emotions, which seemed to me a bit like dialectical behavior therapy light (I’d mentioned I’d done DBT unsuccessfully). They’ll also help me identify my triggers and make a timeline of significant life events or something. I’m not sure what relevance that would have, but oh well.

Currently, I’m trying to talk myself into being positive. This care home clearly won’t improve, so either I improve or my life stays the same. Which is mediocre. I do have my good days, but I’m pretty sure the staff are going to agree at the next team meeting that the staff’s less optimal care approach should be the default.

On my good days this past month, I did craft some earrings, a polymer clay unicorn and bird’s nest, as well as make delicious homemade chocolate fudge. This was awesome!