Beating Myself Up Over Failed Intentions… #JusJoJan

Posted on by Astrid

Hi everyone. Today I’m struggling quite badly yet again. I’m feeling quite depressed and like life is slipping me by. That’s not good, but sometimes it’s the best that can be.

When I set my hopes for this year, I fully intended to experience more, yet here I am, six days into the year and I’ve abandoned Morning Pages, am in bed a lot again or just blabbering on to my staff about whatever.

However, feeling guilty about not having made the most out of the day, means even more of my time and energy is wasted. Rather than beating myself up over a day gone to waste, I’d much rather make the most out of each moment. And sometimes “the most” is pretty little.

About half an hour ago, I was talking on the phone with my wife again and responded to the question of what I’d done today by saying that I’d gone on a walk and played dice, so not much. Then I realized that I’d also made a necklace. Remembering that made me smile to myself.

Of course, my day schedule is still not working as it should and that might never change, but it’s up to me to make my life meaningful. And sometimes, that means hyperfixating on some random thing, like the fact that I almost certainly finally found the perfect recipe manager. It’s my fifth or so, so this did mean having to transfer my recipes from my previous one into this one. However, this did give me another opportunity to look up interesting recipes.

Now it does often frustrate me that, even though I make plans to cook or bake, they rarely come to fruition. However, like I said above, fretting over this means even more time and energy has been wasted.

This post was partly inspired by today’s #JusJoJan prompt, which is “intentional”. One thing I beat myself up over, is the fact that I didn’t blog yesterday and hardly wrote anything else, so in that sense who am I participating in #JusJoJan? There’s however no jotting police other than my own inner critic.

The Magnifying Glass #JusJoJan

Posted on by Astrid

When I was about eleven, my parents gifted me a magnifying glass for my birthday. It was a small hand-held magnifier that magnified everything eight times. That way, I was able to read large print for a little while longer, albeit slowly. That is until my vision deteriorated even further and, even with the magnifier, I could no longer read the large print atlas that I so loved. That was sad.

Now that I’m totally blind and couldn’t care less about that large print atlas, I do wish I’d kept the magnifying glass. Not for myself, but so that staff can more easily help me with my crafty pursuits. Many of my staff struggle with the detailed work involved in jewelry-making or with reading small print.

Then again, with the print, I could easily point my iPhone camera at it and have Seeing AI, Envision or another related app read the text for me. Intriguingly, yesterday I was chatting with a staff about learning to write and she asked me whether I could still write by hand. I asked her to hand me a pen and a piece of paper and wrote my first name onto it. Envision didn’t give me any feedback, but Seeing AI read everything except for the A. Of course, every letter except for the A was an inch tall. I am however pleased that it was legible by AI.

Not that it’s of any use in daily life. I mean, when I had to get a new passport a few months ago, it was decided that my handwriting isn’t readable enough for me to write my signature. That’s in part because my signature has always been a mess because I never quite understood the concept. However, my handwriting has definitely worsened over the years. I’m glad though that I got the comment on my passport that I’m unable to sign, because that way until I’m due to get a new one in ten years, no-one will ask me to try and then conclude that my signature looks nothing like the one on my passport. I had that problem when my wife and I were buying our house. Thankfully, the solicitor was able to ask to colleagues to sign in my place. Next time, official people will know beforehand thanks to the note on my passport.

This post was written in response to today’s prompt for #JusJoJan, which is “magnify”.

Mindfulness As an Activity #JusJoJan

Posted on by Astrid

Hi everyone. Happy New Year to you all! I’m happy to read Linda has given #JusJoJan another go and I’m going to try to participate again. Today’s prompt is “mindfulness”, which really speaks to me.

When I first learned about mindfulness, I was in dialectical behavior therapy for my emotion regulation issues. All I remember of it at the time were rather abstract concepts like imagining your thoughts are like clouds in the sky. I couldn’t put these concepts into practice at all. I mean, observing my thoughts felt so completely alien to me. Same for mindful breathing exercises. I’ve tried them, a zillion times, mind you, but I always end up being distracted.

Then, a few weeks ago, I was listening to a podcast episode of one of the ADHD podcasts I listen to occasionally. Not that I have a diagnosis of ADHD, but I relate to many of its traits. The episode was about seven different kinds of rest. In it, the podcaster described seven different ways of rest that we all need, including physical rest, mental rest, spiritual rest, etc. None of these in her particular experience involved napping. Also, by doing just one activity, the podcaster said you could be resting in more than one way.

For example, she mentioned going on a walk and, while on her walk, being conscious of every red thing she saw. This is mindfulness in a totally different respect than imagining your thoughts are clouds. It totally spoke to me!

Now of course I’m totally blind so counting or naming red objects doesn’t work for me. But I’m sure the same principle can be applied to sounds or any of the other senses. I’m going to give it a try when I next go on a walk.

Echolalia

Posted on by Astrid

Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.

Behind My Anger #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Many people think I’m angry a lot. It was written in my reports from psychologists as early as age 8 and maybe even younger. I do sound angry sometimes, but behind that anger are many other emotions. I mean, I rarely feel genuinely angry, but I express many strong emotions as rage, irritability or other forms of anger.

I don’t blame other people for not seeing it. I see anger a lot when others claim there isn’t any. But it’s hard for me to look beyond (my perceptions of) people’s surface expressions. When it feels as though an angry person stands in front of me, or worse yet, behind me, I shrink inwardly, but react outwardly. This is really hard for others to comprehend, but I have the same feelings as everybody else. So do you, even if it appears I only see anger. We all need to look beyond what seems to be in front of us.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “in front” and/or “behind”. Linda’s also doing #JusJoJan again, which stands for Just Jot It! January. I will write a post when the prompt appeals to me, but I do really hope to be blogging regularly this month (and the rest of 2025).

Finding My Crafty Tribe #JusJoJan

Posted on by Astrid

I first started out crafting as an adult in 2012. Back then, it was card making. Well, let me tell you, picking that craft wasn’t the wisest choice I could’ve made. I’m not saying blind people cannot do card making per se, but I for one could not. And, even though at first I was supported in the process by my fellow card makers in what were then still E-mail groups, criticism quickly grew.

Then came jewelry-making. Same thing really. Though I can string together a basic necklace or bracelet and I don’t need kid-level beads for it, I never moved beyond that. I did make the wise choice of not participating in swaps or the like, like I had done with card making.

For a while, I participated in the trend of rainbow looming. Remember that? It’s so 2015!

Then came soap making. Though I can create a simple melt and pour soap, the fun really disappeared quickly because I never moved beyond that and the only thing I can experiment with are different scents.

And then – after a few steps along the way that I decided to skip for brevity’s sake – came polymer clay. Though I am still a beginner at that too despite having worked with the medium for 2 1/2 years and will most likely never move beyond beginner stage, I feel more like this is a medium in which I can use my creativity. Much like with card making originally, it’s a very versatile medium even for total novices.

Within the polymer clay community, I do have my tribe that I stick to. For example, there’s the Dutch polymer clay Facebook group, in which most members and all admins are incredibly supportive of me and my work. In February of 2023, I helped think up the theme for the monthly challenge. It became “unicorns”, of course, which was probably a little too narrow, as I was the only one who ended up participating. However, I do love the fact that the other members do consider me a valued contributor to the group.

This post was written for #JusJoJan, for which the prompt today, coming from me, is “craft”.

To Freewrite vs. Free to Write #JusJoJan

Posted on by Astrid

I started and restarted this post several times. I really want to broaden my horizons in the writing department. To write more, but also to write more outside of my comfort zone. In a way, I want to experience the freedom I experienced when crafting my independently-created unicorn in the writing process too.

But, as with my crafting, in the writing department, fear is holding me back. Specifically, the fear of failure. The fear of my posts not being read, not being appreciated, getting zero likes or comments. If I don’t get any engagement, why bother blogging, after all? I could just as easily keep a private journal in Day One.

Then again, even in Day One, I censor myself when writing. Even where no-one reads my writings except for possibly my future self, I’m constantly telling myself I’m a bad writer, constantly editing out mistakes or “inappropriate” wording. Yes, I even did this with my Morning Pages back when I did those several times over the past couple of years.

Is it, however, really that I’m looking to freewrite? Or is it more that I want to be free to write? What’s the difference? Well, this is a freewrite.

However, there are other ways in which I let my censor, as Julia Cameron calls it, dictate what I can and can’t write. So many in fact that I hardly write self-growth posts anymore because these don’t get much engagement, even though these are the posts I sometimes feel inspired to write. When I am free to write, I write what I feel inspired to write even when this isn’t a huge success by externally-determined standards like my stats. And who knows, maybe it will be a success someday.

This post was written for today’s #JusJoJan prompt, which is “writing”.

Ideal Isn’t Real

Posted on by Astrid

Today is the day the word I picked for #JusJoJan was assigned to, so I’m pretty much obliged to write a post. My original choice for a word was “Home”, but I made up my mind as I wrote my comment on Linda’s post and chose “Ideal”. My plan was to then write about my ideal care situation.

I am not sure I can do it though. An ideal situation, after all, doesn’t exist and chasing it may mean I lose sight of the things I could appreciate in what I already have. That’s possibly what happened with the move to my current care home, much as I struggle to admit it.

Of course, I knew there were going to be drawbacks to this care home, but I minimized them in my mind. When, back in like late 2021, I read up the information on this care home on my agency’s website, it sounded ideal. In fact, I remember at one point telling my staff and some people on an E-mail support group I belong to that it was my dream care home. But that’s judging from a promotional webpage, not reality.

Then when I actually got the opportunity to go here, what I found out on my visits here indeed revealed some more negatives. However, for the most part, these were vague “gut feeling” negatives, not facts. A factual negative was the fact that staff here don’t tell us clients who will be on shift the next day, reasoning that they might fall ill. “But we all come back,” the support coordinator reassured me, “and if we don’t, we’ll tell you.” Well, the one time a staff left so far, I didn’t find out in advance.

Maybe, looking back, there were clearer signs than just my gut feeling that the dream care home was going to turn into a nightmare. I am not sure. Maybe I didn’t ask the right questions. Maybe the staff – purposefully or not – avoided answering the real questions, focusing instead on details. Either way, I can’t help it now. What I can do is never believe something is going to be ideal again. Ideal isn’t real, after all.

Solo: Making the Most of My Alone Time

Posted on by Astrid

Today’s prompt for #JusJoJan is “solo”. It has many meanings, but the overarching one is “alone”. For this reason, I thought I’d use this as an opportunity to write about ways to make the most out of my alone time.

You see, I don’t really do well with alone time. It makes me anxious. At the same time, I need alone time. It helps me recharge. How can these two coexist, you might wonder. Honestly, I’m not quite sure.

However, the more important question is, how can I make sure the recharging effect gets the upper hand rather than my anxiety? The key to this is making the most out of my time alone.

In my old day schedule, I had random slots of alone time that could last anywhere between 15 and 60 minutes, sometimes longer if I didn’t come out of my room to alert the staff. This caused intense anxiety, because I never knew when I’d have time alone and, when I did, how long it’d last. This meant I didn’t know what activities to do during my alone time.

Now though, I usually have time slots of 30 to occasionally 45 minutes alone. In all honesty, I think the 30-minute time slots could be lengthened to 45 minutes if they could be decreased in number and by extension my time slots of activity lengthened too. This isn’t likely possible at my current care home though.

During the time of my old day schedule, I used to feel stressed when alone and as a result use up the time by wandering around my apartment. Now I occasionally still do this, but I try to put each moment of alone time to good use. For example, Bible study and blogging are things I can’t do when a staff person is in the room. I do these when I have alone time, but sometimes I struggle to finish them off during my 30-minute solo time slots. At the same time, I struggle to find meaningful activities that I can do within my 60-minute time slots (which are usually cut short) of one-to-one support. Part of the reason is my need to get into a routine – for example, of gathering my polymer clay supplies. Part of it is the fact that some staff start out by proposing a certain activity, which makes it hard for me to switch to wanting something else. And part of it is probably my mindset too, in that I get overwhelmed with not knowing how long an activity will take and thinking I “only” have this amount of time. This applies to alone time too.

I often say that, in an ideal world, I’d have one-on-one all the time. This isn’t true. In an ideal world, I’d have good chunks of alone time with staff only popping in once every 45 minutes (because otherwise I’d lose track of time), so essentially no extra care then, during later evenings and part of the weekend. I’d also have good chunks of supported activity during the day. Oh wait, that’s pretty much how I had it in Raalte and I was going to let go of comparisons with old homes. No, wait again, my day schedule back there wasn’t ideal either. But it allowed for longer chunks of activity time during weekdays and that’s really what I dream of.

God Created the Stars

Posted on by Astrid

Yesterday, I started for maybe the fifth or so time in a Bible-in-a-year plan. However, this time, unlike any of the other times, I didn’t just try to read the Bible cover to cover. In fact, I’m not reading it cover to cover at all. Yesterday’s assigned chapters included Psalm 1, Matthew 1 and of course Genesis 1. The plan also included commentary in the form of a devotional. The verse I want to talk about now is in Genesis 1.

“God made two great lights—the greater light to govern the day and the lesser light to govern the night. He also made the stars.” (Genesis 1:16 NIV)

The part the plan writer highlighted, was the last bit about the stars. He commented that there are literally billions of stars in our galaxy alone. I had no idea! However, isn’t this fascinating?

Whether the Biblical account of creation is literally correct, is beside the point. It isn’t about when or how. It is about who and why. And the “who” in the Bible is God.

I think it’s quite amazing that God created an entire universe, complete with constellations and constellations of stars, and put humanity at the center of it. He could just as easily have chosen anything else. Maybe if He’d chosen another living creature, it wouldn’t have ruined the planet and beyond as much as we do.

But God has His reasons for having chosen us. And having allowed us to mess up. I’m not yet sure what they are. Maybe I’ll never find out. It’s a fact of life though that we – all of us – mess up. That’s why we need Jesus.

And maybe God’s reason for having put us at the center of the universe and yet having allowed us to mess up massively, isn’t about us at all. We tend to make everything about us, after all, both individually and as a species.

Maybe by Godly standards, we aren’t as important as we think. In fact, I’m pretty sure that most of us overestimate our importance and underestimate our shortcomings precisely because we measure ourselves by human standards. At least I do. And yet by Godly standards, only one human (Jesus) met the bar. My defiant side says this isn’t fair. Yet it only isn’t fair if we put ourselves at the center of the universe. If we put Jesus at the center, it is most definitely fair.

I am joining in with #JusJoJan, for which the prompt today is “constellation”.

I’m also linking up with Inspire Me Monday.