The Good and the Bad: How I’d Rate My Days

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is rather relevant for me. In it, Sadje asks us how we’d rate our day. I’m not going to pick a specific day, but use this as an opportunity to write about the quality of my days and as such my quality of life.

When the Center for Consultation and Expertise consultant met with me last September, at one point she asked me how I’d rate my quality of life on a scale from 1 to 10. I find this difficult to say, as some days just about completely suck while others are okay or even somewhat joy-filled. I said that, on my absolutely awesomest days, I’d still rate them 7 out of 10 due to the fact that I experience pain and other forms of discomfort daily. Honestly though, I’m being optimistic when I do this. Even on my greatest days, after all, I hardly experience any noteworthy things. Like, I consider cooking or crafting to be enjoyable, but is my day really more than just about okay when I have done one of these?

This also signifies that my life could still very much be improved with just a few in my opinion relatively minor changes to my care. However, my staff see it differently, because they believe I can’t do a cooking or crafting activity when I’m in distress and, I believe, they also think I should be happy with just a walk and a dice game each day. Which, honestly, I’m not.

This makes me feel bad. In the words of my assigned staff at the intensive support home, when the staff follow my day schedule perfectly and I get all familiar staff, my day should be perfect. I replied, in my opinion truthfully, that no-one ever has a perfect day.

Now, to answer Sadje’s question about how I’d rate today: I’d probably rate it a 4 out of 10. I was rather distressed due to another incident yesterday. I also didn’t get to do anything other than go for two walks and play a game of Yatzy. I did, however, manage to do some reading and, as you can see, am writing this blog post. This signifies that, despite my distress, I’m still relatively able to function. My days could still be a lot worse. Besides, I had a cup of green tea in the evening. Oh wait, there I was being cynical, because green tea has become my symbol for how I actually feel about my life: when a cup of green tea is the highlight of my day or even week, that’s rather odd.

Being a Snob

Posted on by Astrid

Hi everyone. Today, Sadje’s Sunday Poser is all about snobbery. I’ve always thought of being a snob as something negative, but being proud of your culture or an aspect of it can be a good thing too. So am I a snob?

In the positive sense, no, not at all. I don’t have a fine taste in art or food whatsoever. I actually love going to all-you-can-eat restaurants and hardly notice that the food isn’t good quality.

With respect to art or literature, my bestie and I have this inside joke about people not having read “Multituli”. We got the joke after a semi-famous Dutch writer having said that people outside of Amsterdam never read “Multituli” and are as such quite backwards. The actual pen name of the author is “Multatuli” and I actually did read his work, Max Havelaar back in high school, but other than a few random quotes, I hardly remember the story.

This brings me to my attitude and, yes, I can be a bit snobbish about my intelligence. I remember at one point talking to my assigned staff, the one who is still a student. She told me she was learning about attachment theory in school and, even though my comment wasn’t meant as bragging at all, it did come across as such to her. I told her I probably knew more about this topic than her. I probably do and this isn’t an advantage at all, hence my not having meant it as bragging. In fact, the fact that I know more about emotional development, attachment styles etc. than most of my staff, is quite a problem for me, as I cannot apply it to my actual life.

As a teen, I was quite a horrible snob, taking pride in my intelligence and my education. Now I realize I’m truthfully quite average. In other words, mediocre. This realization does often lead me to making self-deprecating comments. Yesterday, when my bestie and I were discussing Meta AI, I said that of course I’d objected to my data being used. My bestie commented that it makes sense that I don’t want AI to steal my pictures of my polymer clay. I immediately thought this was sarcasm and explained that, while most of my works are indeed based on tutorials and not all that good, that doesn’t mean I want AI to use them. It was only later that I realized my bestie may’ve been sincere.

How Blogging Has Changed Me

Posted on by Astrid

Hi everyone. Today in her Sunday Poser, Sadje asks us how blogging has changed us and specifically our thinking.

This is a really tough one. I started keeping an online journal that gradually morphed into a blog at age 16 in 2002. Starting that journal wasn’t a surprise: I’ve always been a bit in your face with my issues, especially to strangers. Back then, I wasn’t ashamed to put my thoughts out there for the entire world to read. My English, though it was readable, wasn’t nearly at the level it is now and I had no concept of privacy either for myself or others. I honestly can’t say I don’t regret any posts I’ve put out there. I actually regret having posted some of the writings on my current blog.

As such, having written stuff online for 23 years helped me be slightly more aware of my own and other people’s boundaries. I still probably should be more careful. In fact, I considered starting a new, anonymous blog earlier this year, but I doubt how much that’d help me be truly unidentifiable. I, after all, share so much online about myself that I’m pretty sure my nicknames are easy to connect.

In other respects, blogging has helped me become a better writer. That is, before my days on WP, I did share the stories I’d written as a teen online too. However, these were written in Dutch. Blogging has certainly helped me improve my English.

I still rarely express myself through creative writing, such as poetry or short fiction. That’s a goal I have had for years, but somehow it feels embarrassing to do. That’s weird, isn’t it? I don’t feel ashamed of blabbering about my life, but creative writing scares me.

With respect to connections, WP has helped me immensely. As soon as I moved my diary to WP in 2007, I learned about the blogging community and have started making connections. Some of these people, like carol anne from Therapy Bits, I still talk to more than 15 years on. Blogging isn’t like real life for me, in that hardly any deep friendships have formed out of it. Oh wait, I only have one friend IRL too. 🤣 Maybe this means I’m too superficial for deep connections.

One last thing I learned from blogging is to keep my mouth shut when I have nothing nice to say. That doesn’t mean I can always do so in real life, but I learned early on that particularly when commenting on other people’s posts, you should always include something positive or encouraging. I was harshly criticized back in my early days online for honestly saying that some product wasn’t for me. Turned out the post was sponsored. Let me just say I will never do that kind of thing.

I did occasionally try to be a “lifestyle blogger” in Dutch, but it isn’t my thing and will never be. I’ll, after all, always be authentically me. As such, when I say something nice, I do mean it (it isn’t like I comment positively just because I need to).

That’s a good thing about WP as opposed to self-hosted blogging: there’s less pressure to become an “influencer”. That doesn’t mean you can’t be more or less popular, but I trust those on WP, including those who get a zillion comments, to be authentic.

To Speak Out or Not to Speak Out

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is an intriguing one. Sadje asks whether I’m the one who will speak up when I see a wrong being done or whether I’ll keep quiet. I’m going to interpret this more broadly and share how I tend to react to injustice in the world in general.

And the truth is, shameful as it is, I no longer speak up. This didn’t use to be the case. When I first started out blogging on WordPress in 2007 and especially between 2009 and 2011, I frequently wrote about injustices to groups I didn’t even belong to, like trans people. Now though, I struggle to speak up and I’m not even certain this is out of fear of speaking over marginalized groups. Well, that is, I’m quite certain that it isn’t that. It’s fear of being targeted myself.

Don’t get me wrong, I still speak out in real life against injustices being done to other people, especially those I love.

I struggle with this when it’s microaggressions like “jokes” and I actually regularly catch myself making hurtful comments towards people in minority groups I’m not part of.

This is, actually, more problematic than it might seem. I mean, I could say I’m not trans, not an immigrant, not [insert the latest scapegoat of fascism], but in reality everyone has privilege and almost everyone is marginalized in some way. Besides, like my best friend recently said, fascism’s goal is to destroy society.

I am, however, often too scared of being the next target to speak out openly. This is why I’m more gentle than I’d wish I were when pointing out transphobic or racist or otherwise oppressive comments in real life and especially why I’m no longer as vocal as I used to be on my blog. The world just isn’t as safe anymore.

This does also mean I can no longer be fully myself online. It’s just too easy to track me (and my loved ones) down from my blog. It was even easier back in the early days of my being on the Internet, when I’d almost always use my full name everywhere. However, either I was the lucky one back then for not having been attacked in real life, or the world’s become a harsher place. Probably a little of both.

How My Personality Has Evolved Over the Years

Posted on by Astrid

Hi everyone. Today, in her Sunday Poser, Sadje asks us how we’ve changed, personality-wise, as we’ve grown up.

The first way in which I’m far different from what I was like as a teen, is my self-expression. I am much, much more open about myself and my inner world than I was when I was younger.

Oh wait, I need to nuance that statement slightly. There, after all, was a time in my late teens and early to mid twenties, during which I was more open about myself than I am now. On my first blog, which I started as a diary in 2002 and moved to WP in 2007, I probably showed a little (a lot) more of myself than would be considered normal. Also, no-one probably remembers that I had my current blog URL for a few months in 2011 too, but I do. I particularly remember with a sense of shame a post one of my alters wrote just after I got married saying my spouse probably doesn’t even love me. Well, now nearly fourteen years on I’m convinced that my spouse does love me, but even if I didn’t think so, a public blog wouldn’t be the place where I’d spill my guts.

I do believe that, even though I was extremely private as a teen, the willingness to share my thoughts was always there. I just didn’t trust my audience at the time, ie. my parents and teachers. Now trusting the whole world isn’t necessarily safer, which is why I’m no longer as candid as I was even seven years ago when I started this blog.

Another way in which I’ve changed, which might be related to the above, is that I’m generally more outspoken and assertive than I was as a teen. I still oscillate between passive and aggressive a lot in daily interactions, but where it comes to major life decisions, I’m not as dependent on the approval of others as I was.

Lastly, I’ve probably become less judgmental than I was in my teens. I’ve also become less arrogant. I mean, back then I looked down on people with intellectual disability or those who were less educated than I was in general. It did take me having to rely on the care system myself in order to change that.

As a result of being less judgmental towards others, I have also become less hard on myself. That doesn’t mean that the voice telling me I should be able to live fully independently, isn’t there anymore. I am however able to channel that voice into prioritizing my need for self-determination.

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.

The Most Important Life Lesson

Posted on by Astrid

Hi everyone. Today Sadje asks us in her Sunday Poser to share life lessons we’ve learned. I was pretty sure I’d done a post on the most important lesson I’d learned in life some years ago, so went to look and indeed, I wrote about this topic in 2018. Wow, how time has flown!

And it doesn’t surprise me that, when I read Sadje’s question, my initial thought was to share the exact same lesson I shared back then: that it’s important to stay true to yourself. Today though, I’m going to make it even bolder: I am the most important person in my life. That sounds selfish, right? But guess what? Each of us is the most important person in our own life. You can’t live for anyone else, by which I mean no-one else can make you happy. No, not even when you think that someone else does; it’s still your understanding of their love or acceptance that makes you happy.

To word it even more bluntly, if everyone thinks of themself first, no-one will be forgotten. This doesn’t mean we need to be going against moral sensibility or harming other people just because we want it. After all, harming others isn’t in our own best interest in the long run either.

By saying that no-one else can make us happy, I also didn’t mean we don’t need connections. However, no-one else can live our life for us.

I also want to share what learning this life lesson has helped me with since 2018. I still struggle with everyday decisions, but I attribute this to the fact that I often get overwhelmed with them.

I am happy to report that, since indeed landing in a less than supportive environment (ie. the intensive support home) in 2022, I was able to stand up for what I needed. I’m now back in quite a supportive place, but I’m glad I’m still able to advocate for myself. This doesn’t mean that the thought that everyone will ultimately abandon me if I’m myself, is gone. It’s worse than ever, in fact. I still need to work on the idea that, even if they do, that doesn’t mean I’m a bad person.

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.

Worries

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is about worries. What worries you about the future?

Unlike Sadje, I mostly have personal worries occupying my mind. Most of them also aren’t long-term. I mean, I do sometimes worry that the sweet and high-fat foods I consume today will lead to an untimely death ten or twenty years from now, but that worry isn’t as all-consuming as my worries about the next few weeks, months or the next year. I joke that, in 2034, everything will be okay. I got that from the book titled 2034, which I still haven’t read and is about World War III erupting that same year. I think it’s more likely that World War III is going to break out that year than that the care system will be any closer to ideal. However, in reality, I can’t look that far into the future, so I know I should care, but really I don’t.

This is probably the same reason the state of the planet doesn’t keep me up at night. That is, except when I read a news article detailing that the magical 1.5 degrees of warming have been hit in some parts of the world in 2023. Then I did worry: will the planet catch fire (not even sure whether I’m talking hyperbolically with all the wildfires we’ve had) next year?

Still, most of my worries concern my personal life. That doesn’t mean the news doesn’t effect me, but it only does when I think it relates to me personally. For instance, when I read that policy makers were talking about reintroducing 24-hour diapering for elderly people who can still use the bathroom but need assistance with it, I was intensely worried. It was said in the same article that the phrase I repeat many times over and over again when talking about my care was: “It’s better to have reasonably good care for two people than excellent care for one person.” Did they mean me? Was my care, with (at the time) nine hours of one-on-one a day, “excellent”? Apparently, because now I have just seven. But I’m still worried they mean me. After all, I still cost considerable money (far more than elderly people needing an hourly assisted bathroom break) and aren’t sedatives cheaper than one-on-one, just like diapers are cheaper than nursing assistants?

It isn’t really a clear thing I do worry about though. I mean, yes, I do worry about my care being cut, but then again, I can’t look far into the future. When I try, I’m always wrong on so many levels. So they remain mostly vague worries that keep me up at night.

Sometimes though, like recently, they’ve been more short-term, concrete things that worried me, such as over the past week the fact that my support coordinator, behavior specialist and intellectual disability physician had a meeting on Friday. The positive news is that the explicit compensatory system, by which every minute I’d come out of my unsupported time in distress had to be compensated for at my next one-on-one moment, was discontinued. Rather, from now on, staff will again discuss with me once I’m calm whether they can come back at a later time for my next support moment since they needed to spend more time on me. I am so happy I no longer have the compensatory system hanging over my head, even though some staff said the end result would be the same. I don’t care about the end result (which, by the way, will probably mean I’ll need slightly less support, honestly); I care that this makes me feel much more comfortable.

Act Your Age, Astrid?!

Posted on by Astrid

Hi everyone. Today’s topic for Sunday Poser is the idea of acting our age. Society expects us to act a certain way depending on our age – not just behave quite responsibly past our mid-twenties or so, but also to wear certain clothes, listen to certain music, enjoy certain activities, etc. depending on our age. Do we generally conform to that expectation? A quick read through the comments on Sadje’s original post gave me the impression that, no, we don’t. And I personally certainly don’t.

With respect to the responsible behavior part, I have to admit, unlike the other participants, that I’m very much a child – no, a toddler – at heart. I still have significant temper outbursts, for instance. In fact, on my thirtieth birthday, I had an intense outburst and was adamant that I could no longer have those in my thirties. Well, my brain wouldn’t listen. It’s said that my emotional developmental level is comparable in many ways to that of an infant or young toddler.

In other ways, I’m still a child at heart too. I love unicorns, going on the swings at the institution playground and stuffed animals. I even talk to my stuffed animals at times.

Then in other areas, I do act my age or even older. I’m not keen on using my phone when doing another activity and get annoyed when my staff get constantly distracted by text messages. I don’t really do social media except for Facebook (which probably makes me appear really old). It isn’t that I haven’t tried, but I was rather late to the party with most platforms.

Of course, the fact that I use the singular pronoun “I” here, is a bit misguided too, since we’re a plural system and there are parts of all ages. This is probably one of the reasons that I can talk to my stuffed animals happily one moment, have a temper tantrum the next and be involved in an “old-fashioned” hobby later. I do sometimes wonder whether my parts are genuine alters or whether something like internal family systems could help them too. Then again, I’m not in therapy, IFS or otherwise, anyway.