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.

TGIF: Twenty-Two Degrees!

Posted on by Astrid

Hi everyone. I’m joining Paula Light for
#TGIF, an opportunity to ramble.

Today, let me share about the weather. It’s been okay most of the week with some rain, some clouds and occasionally a bit of sunshine and temperatures rising to about 16°C. That’s cold for May if you ask me. Now I’m no weather expert, so I have no idea what constitutes normal weather for May, but it feels like it should be almost summer-like.

Which, today, it is. The daytime temperature reached 22°C. Well-known Dutch meteorologist Erwin Kroll, who would do the weather forecast on public television in the late 1980s and 1990s and is therefore my face of the weather, once told an interviewer on the audio magazine for blind children that this was his favorite temperature. After all, at 22°C, you can both sit still and move around without getting cold or hot respectively. I love this temperature too, though my ideal temperature is slightly warmer.

I once again wore my blue, flowery skirt that I also wore last week, along with the same blue shirt. In the evening, I changed into shorts, because I was going on the stationary bike. I had also gone for three walks today, so up till this point have nearly two hours of active minutes on my Apple Watch. I intend to still dance some, because I feel compelled to double my movement goal once again.

In other health news, I stepped onto the scale on Wednesday and I finally reached a truly healthy BMI. Yes, you heard me correct, this time it’s not nearly, but actually. Even though my dietitian tells me I no longer need to lose weight and has been telling me so for a while, I’d love to still lose a few pounds. That being said, I understand the dietitian’s logic: with my history of bulimic tendencies, it’s easy to fall into that trap again and a healthy lifestyle is more important than an ideal weight. The last time I was at a healthy BMI, was back when I got married in 2011, but then again back then I engaged in purging behaviors quite a lot too. I never, ever want to go back there.

I do need to make sure exercising doesn’t become compulsive either. That being said, that’s not as likely to happen as my body just can’t go on forever. Then again, actually listening to my body – challenging it when it needs to be challenged beyond its comfort zone and giving it a rest when it needs to rest -, is quite hard. I am working on this though.

How I Like to Spend My Weekends

Posted on by Astrid

Hi everyone. Today I’m participating in Sadje’s Sunday Poser. She asks us whether, on weekends, we like to relax at home or prefer to go out. Since I prefer a combination of both, let me share how I usually like to spend my weekends.

On Saturday, most weekends, I stay at the institution (I still can’t really bring myself to call it staying “at home”). My day schedule isn’t any different then from other days, except that we get a treat with our coffee and soda and chips in the evening. I don’t tend to lie in on Saturdays either, because I feel it’d disrupt my circadian rhythm. Which, to be honest, is quite disrupted as it is from the naps I do take. This is not just a Saturday thing though.

Like I’ve probably mentioned before, my day schedule consists of activity slots intertwined with times when I don’t have support. During my activity slots, I usually go for walks, play card games or occasionally do some crafts. During my times without support, I prefer to chill out on my bed with some music on (which usually leads to me falling asleep) or to read.

Sundays are the exciting part of my week, as my husband then visits me. He generally arrives here at around 1PM. Most weekends, we drive to Apeldoorn to go to Backwerk, where we eat a sandwich or baguette. We also usually take a stroll through the city and go to Hema, a department store which is my husband’s favorite. Sometimes, we’ll go to other stores too. I usually arrive back at the institution at around 3:15PM.

Every once in a while, I’ll go to Lobith to spend the weekend. Usually in that case, my husband picks me up on Saturday at around 3PM and I am back at the institution on Sunday around noon. Even though I usually take my laptop with me, lately I haven’t really used it at all, as we were so comfortable relaxing on the couch together that I didn’t feel a need to retreat upstairs.

As for what I prefer, I really wish there were some difference in my day schedule between weekdays and weekends, but this somehow isn’t possible. Other than that, I like the combination of relaxing in my room and going out with my husband.

TGIF: Optimal Care?

Posted on by Astrid

It’s Friday and this means Paula Light is rambling on in her TGIF post. I don’t join in each week, but today, I’d like to.

Today, I received optimal care as per my current care home’s standards. That is, my day schedule wasn’t disrupted and I had one staff member for the entire shift both morning and evening. My assigned staff says this means I’m lucky. I considered myself lucky this morning indeed, since one of the regular staff was my one-on-one staff while two temp workers were supporting the other clients. My staff for the day explained that one of the temp workers knew the other clients pretty well and he’d never worked with me, so it was decided that he’d do his shift supporting them. This, indeed, does make me feel fortunate.

However, with respect to the day schedule, I still feel that it could be better. And I don’t mean with me receiving quantitively more support. I mean that I’d like longer support times and fewer but longer times without support. I also probably want to work towards going to a day center.

I’m probably going to insist I’ll attend the meeting with the behavior specialist, support coordinator, my assigned staff and my mother-in-law next week. In my opinion, given how it’s been going over the past couple of weeks – better than before -, I’m not dead set on leaving this home as of yet. However, I do need to make sure that there’s going to be at least some room for improvement on the part of my care home. Judging from my staff’s comments, I’m pretty sure there isn’t and in fact they want me to adjust to less and less suitable for me care.