Before and After

Posted on by Astrid

I rarely if ever turn the pages of an actual book these days, since I can’t read print and Braille books are just too clunky to have around. Turning pages, for this reason, is mostly just a figure of speech: I can turn the page on a memory, turn pages in the book that is my life, etc.

Sixteen years ago today, I experienced a turning point in my life, as on that day, my fragile mental state completely collapsed. The night after, at roughly 2AM on November 3, 2007, I was admitted to the psychiatric hospital.

Since then, my life consists of a “before”, in which I appeared to more or less function in life according to non-disabled standards (but was really merely surviving), and an “after”, in which I appear to have given in to the disabled side of me (but am slowly learning to live). I struggle to unite the two.

This post was written for this week’s Six Sentence Story Link-Up, for which the prompt word is “turn”.

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.

Choice of Residence

Posted on by Astrid

Hi everyone. Today’s topic for Sunday Poser is how or why you chose your city, county or area of residence, or whether it was a choice at all.

I stumbled across my current care agency by chance in 2017 when trying to find day activities for once I’d be discharged from the psych hospital. After going to two different day centers with this agency and coming to the conclusion that living semi-independently with my spouse was not a viable option in the long run, I moved into the home that had a place available at the time. That’s the short version of how I ended up in Raalte.

Since knowing about this agency, I always envisioned myself living on its institution grounds. I thought I’d feel more sheltered there. This was one of many reasons I requested to look into the possibility of finding me another care home in April of 2022.

Wilp, the institution town (I’m pretty sure I mentioned it before so I might as well tell you rather than remaining vague) is right in the middle of the tricities Apeldoorn/Zutphen/Deventer. I think the town itself has a little too little to offer for my liking, since it only has a bakery and a coffee corner and that’s basically it. However, all three cities are within easy driving distance and Twello, the neighboring town, is within cycling distance. It’s too bad our home doesn’t have a side-by-side bike.

Since I grew up in Apeldoorn, I am sort of familiar with this area. Not in the sense of knowing my way around – I’d never even heard of Wilp before finding out about this care agency -, but in the sense of knowing the culture. It’s not necessarily my type of culture – a bit too conservative for my liking -, but I am okay with it.

The institution I live in is great. No, not the home, of course, but I love the petting zoo, on-site swimming pool, various day centers, etc. The fact that residents and staff all greet each other, is also awesome. It’s really like a small village in itself. And indeed, it’s more sheltered than community living in Raalte was. One drawback I need to mention though is getting mail delivered. Particularly packages cant be sent here. Ah well, I’ll get them sent to my in-laws and get my spouse to collect them and bring them here on Sundays.

Can’t Wait to Leave

Posted on by Astrid

Today’s prompt for Five Minute Friday is “leave”. I am pretty sure this or a similar prompt came up before when I was in the process of finding what turned out to be my current care home. Maybe not on Five Minute Friday but on Stream of Consciousness Saturday or the like. Well, now that it came up on FMF, even though I’m not an actual Christian like most of the participants, I thought I’d join in. So, here goes.

I can’t wait to leave this nightmare of a care home. Today, a fellow client was being severely out of control right in front of my room and my would-be one-on-one had to leave me to attend to him because her colleague was alone attending to “the group” (ie. everyone except another one-on-one client). I felt it was unfair, because that other client’s one-on-one is non-negotiable, while my staff keep claiming I need to cut back on my hours. Well, I could not do any activity at all with how long it took the staff to attend to this other client and then bluntly tell me, once melting down, to calm down, etc.

I can’t wait to leave this nightmare of unclear and mostly very harsh treatment that I receive here. I mean, I’m not aggressive, but I get treated like I am.

I am hoping to find out when I’ll be moving to my new care home real soon.

I sometimes feel left alone on this journey. I try to turn to God, even though I no longer subscribe to traditional Christian beliefs. I really do hope that, even if (which I’m pretty sure is a “when”) I’m left all alone in this world, there’s someone out there who cares.

I’m a Four! #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is to pick a number and write on it. The thing that came to mind, after some thought, was the Enneagram. I’m a Four. I used to think, back when I was growing up, that I was a Five. Fours are typed as the Individualist. Fives are the Investigator.

Though the numbers are next to each other, they belong to different triads in several respects. For instance, Fours belong to the heart center, deriving their primary motivations from their emotions. Fives belong to the head center, being primarily rationally-focused.

I am a Four with a strong Five wing though. The wings explain what way you lean when relating to the types next to you on the ‘gram.

Then there are instinctual variants. I am probably a social or sexual Four. That sexual instinctual variant says nothing about sex drive, for clarity’s sake. It is sometimes more accurately termed the one-on-one instinctual variant. Honestly, I’m pretty sure that, much as I hate to admit it, I’m a sexual Four. These are generally very difficult people. I have yet to hear someone describe this instinctual variant in a positive light. Or the Four in general, for that matter.

Still, I feel pretty good about being a Four. This is probably because I often associate with being “special” and may identify with suffering a bit too much. That’s typical Four behavior though.

Creating Glimmers

Posted on by Astrid

Today’s prompt for Friday Writings is “Glimmers”. A glimmer is the exact opposite of a trigger, something that brings you a sense of safety or joy.

Let me say that I often struggle with the fear of experiencing positive emotions, so even glimmers could be triggers in a way. I have yet to figure out why this is and what to do about it.

That is, one thing I do about it is to create positive experiences for my inner child parts that aren’t connected to the past. An example of this would be reading stories about unicorns. I don’t think my mother ever read me stories about unicorns as a young child, so unicorns bring out the playful inner child in me without the memories of my childhood attached. I can probably safely say that unicorns are a glimmer for me.

Another glimmer are my stuffed animals, but I honestly think the same applies that is the reason I love unicorns: they can’t be connected to my childhood. I currently have five stuffed animals on my bed, but the oldest one I’ve had for about four years.

I wonder why this is, honestly, given that my childhood, though not stellar, wasn’t horrifying either. Ah, who cares as long as I have my unicorn stories, unicorn polymer clay cutters, stuffed anymals, including several unicorns, etc.? Let me just live love laugh in unicorn land. If only it were this easy…

Physical Discomfort

Posted on by Astrid

I have been experiencing a lot of nausea lately and a bit of a decreased appetite. At first, I attributed the nausea to stress, then norovirus which was making its rounds here at the home. I was really sick with diarrhea and vomiting for only a few hours though, so it’s not even certain I had the virus.

If I have to be true to myself, I’ve been feeling a little unwell for a couple of weeks already. However, it’s really hard for me to tell when I even feel physically unwell and, if so, whether it’s “just” being a little off or it’s something I might need to see my GP for. For this reason, I usually keep going with physical discomfort for months. And even though alertness to my physical wellbeing is one of my care goals, my staff expect me to be able to signal to them when I’m having symptoms (and even when I do, it takes forever for them to take action).

Today, I did ask my staff to call the GP surgery tomorrow to inquire about my kidney function. It’s been decreased for at least a year and, even though I’ve had regular blood tests, I haven’t seen or been told of the results since the summer of 2022.

And guess what? Nausea and decreased appetite are a possible kidney disease symptom. So is itchiness, which I’ve had very badly for months. I don’t mind either symptom as much, in the sense that despite the decreased appetite I’m still eating well and I could continue putting cetomacrogol cream on my skin forever if the itch is nothing to worry about. But I want to make sure my kidney function hasn’t gone significantly further down.

And if it has – and honestly, even if it hasn’t -, I want a consultation with a psychiatrist to discuss tapering my psychiatric medications. I know, the ones that could cause kidney failure are the last ones I started – topiramate and pregabalin -, but I doubt either is very effective. Besides, I just don’t want to keep adding on to my med pile and, if my kidneys show further damage, I’ll need to go on meds for that too.

Let’s hope the staff don’t forget to actually call the GP tomorrow.

Goodbye to Yet Another Social Networking Site? #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “site/sight”. I was immediately reminded of the Reddit blackout. For those not on Reddit, this was started in the blindness subreddit (or so I believe) as a protest to third-party apps to access Reddit being charged enormous fees in order to use Reddit’s API. This would, or so I’m led to believe, essentially render third-party Reddit clients unable to continue as of July 1.

What does blindness or sight have to do with this? Well, the Reddit app is particularly inaccessible with VoiceOver, unlike some third-party apps. While the Reddit site is slightly more useable than its mobile app, it’s still not fully accessible. The fact that third-party apps will most likely be going out of business as of July 1, means that those without sight will no longer be able to access the Reddit app.

While R/Blind is back online, many subreddits are protesting indefinitely by having gone private and disabled posting. This gives me the idea that more is at stake than just the blind community.

I joined Reddit less than three months ago, but I’m pretty sure I’ll have to let go of yet another social networking platform. Oh wait, I can technically still use Twitter and Instagram and Facebook, the latter of which I do still use for its groups, but I prefer not to. I’m glad I still have WordPress, although I wonder for how long.

Don’t Leave Me Alone! #SoCS

Posted on by Astrid

I am one of those autistic people who doesn’t like to be left alone. That is, I do need a significant amount of alone time, but it has to be on my terms. That might seem weird or normal, I don’t even know. I mean, I’m used to it being seen as weird here at the care home. Staff see it as a sign that I crave attention somehow. Which, even if it were true, well, attention is a normal human need.

I am not sure where I’m headed with this post, but I often feel like a fake autistic for feeling like I don’t want or need to be left alone when I’m in distress. Probably because my former psychologist at the psychiatric hospital used it as a reason to diagnose me with dependent personality disorder. Which I might have after all, I’m not sure. Then again, the treatment for that isn’t to leave someone to their own resources just like that.

I often have this statement in my head: “Don’t leave me alone!” It is cried out, in my head, by a child’s voice. I am pretty sure it is from a book and in Dutch, it sounds different, but I’m writing it like this here for the purposes of this post. Don’t leave me alone. Never leave me alone. Well, people always will. That’s life.

This post was written for Stream of Consciousness Saturday for this week. The prompt is “left alone”.

TGIF: A Short But Productive Week

Posted on by Astrid

Hi everyone. Today, I’m joining Paula Light’s #TGIF
once again. Paula writes about this being a short week. I almost forgot about that. I mean, we don’t do Memorial Day here in the Netherlands. We have Veterans’ Day, which I believe is on June 29. However, last Sunday was Pentecost and, as with Easter, the Monday after that is called second Pentecost and is an official holiday too.

My week, despite being short, was productive. On Tuesday, I had a meeting with my behavior specialist and a behavior specialist responsible for a possible new care home (or several, I don’t know). They were purposefully vague about the home(s) this behavior specialist is in charge of. Nonetheless, I think the meeting went quite well.

On Wednesday, I was frustrated all day because my Braille display wouldn’t connect to my PC. I thought the problem was the cable, but it wasn’t. In the end, I found out that I had somehow managed to remove my Braille display from within the screen reader’s settings for default Braille display. My Braille display still doesn’t charge properly, for which a technician will come round on Tuesday.

As of yesterday, I am exercising more than I did last month, because I signed up for two challenges in a fitness app called Challenges. Yesterday, in fact, I burned over 500 active calories according to my Apple Watch. Today I’m not yet there, but I did get in significantly more steps. I don’t want this to become an obsession, so I’m making sure I do other activities too. Like, yesterday I created a polymer clay ice cream cone. I later realized that, because I had used white Premo, it needs to be cured at 135°C, but all the other colors are pretty light Fimo soft, for which 130°C is the maximum temperature (and in fact they often darken at this temperature too). I usually cure a Fimo/Premo combo at 130°C and will this time too, but am pretty sure the Fimo colors will be ruined.

This afternoon, my mother texted me asking whether I’d thought about celebrating my birthday (which is on the 27th). If it’s up to her, she’d like for my parents, my spouse and me to go out for dinner. I discussed it with my spouse, who suggested we go to our favorite chicken restaurant, which is about halfway between my parents and Lobith. Or was about halfway between my parents and Lobith, that is, since when looking it up, I found a different chicken restaurant, closer to my parents (so a longer drive for my spouse) and it turned out our favorite chicken restaurant no longer exists. I’m not yet sure what to do now, but I’ll think on it.