No Reason for Alarm, Apparently #SoCS

Posted on by Astrid

Hi everyone. I’m pretty frustrated right now. This is in part related to the usual struggles with my day schedule, ie. the fact that the only thing that’s clear about it is when I have support and when I’m supposed to be by myself. I’ve explained a zillion times that I need my activities to be more structured but the staff keep saying I can’t do any meaningful activities when I’m in distress. This may be partly true, in that polymer clay, baking and cooking are harder for me to do when I’m in distress, but when there’s no clarity about which activities I’ll do, the sheer magnitude of the list I have to choose from, overwhelms me before I can even decide whether I’m in good enough a mental state to do such an activity.

Another thing that’s been bothering me, are my physical symptoms. I’ve had horrible tremors for a few years already, but over the past year or so they’ve steadily gotten worse. My institution’s physician tells me to distract myself when it happens because it’s probably in part stress-related. However, I can barely operate my phone or computer when my hands are trembling and all the activities that I can do on my own that would at least in theory distract me, involve my iPhone or computer.

Yessterday, the tremors were so distressing and also my leg was in a constant state of tension. The tremors mainly affect my right side, while the muscle tension was on my left side. I have mild cerebral palsy affecting mainly my left side, so it’s kind of understandable that I’d experience spasming in that leg. However, there’s no known explanation for the tremors. Yes, they could be psychosomatic, but they could also be due to medication (one of my various psychiatric medications), some kind of long-term effect of my cerebral palsy, or any combination of these.

Knowing that my doctor doesn’t see a reason for alarm, is somewhat comforting. At least there’s no reason for me to believe I have a neurodegenerative disease. That doesn’t mean the thought doesn’t creep up on me at times though. However, even when I am able to realize that I’m not suffering from Parkinson’s (not that my tremors are at all similar to those someone with that disease would suffer from), the tremors are still debilitating.

On Monday, the staff are going to ask my GP’s nurse practitioner about the symptoms yet again. My intellectual disability physician tells me to distract myself, apparently believing my symptoms are psychosomatic. I’m pretty sure the nurse practitioner is going to say the same. However, if only those telling me my symptoms are all in my head and due to stress, could help me lessen that stress!

This post was written for #SoCS, for which the prompt today is “alarm”.

Hope for My Home #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “starts with ‘ho’”. The first word that came to mind for me was “home”. In less than two weeks, I’ll be at my current care home two years. I remember celebrating the two-year mark in Raalte, almost fully confident that I’d stay there for many more years. In fact, at my care plan review at the end of September (I moved into the care home in Raalte in September too), I said I was 95% sure that I wanted to stay there. “Make it 98%, please,” said my home’s manager. A year later, I had moved to the intensive support home and, as it turned out, the higher-ups in Raalte didn’t want me back.

Another word that came to mind is “hope”. We all could use a little hope, I think. I want to start by saying that, if I celebrate my two-year stay at this home, it doesn’t mean I’ve jinxed (a word I only recently learned of) it and I’ll be voluntarily kicked out of here in less than a year, like in Raalte. I still hope there’s room for improvement in my care and, rather than being shoved around, I’ll finally be able to feel home.

I do admit I have good days. Today, I baked a Biscoff blondie with my staff. That was fun! I just so wish that my life were actually relatively good rather than my having to hope everyday that this day will not suck. Not that a day when I don’t bake sucks, of course. Life is more than Biscoff blondies. But when all I can tell my spouse on the phone that I’ve done today is walk and play dice games, it’s boring. And that’s while my life could be so much less boring if I were able to contribute. And I don’t just mean cooking, baking and crafting. I mean the less interesting tasks of daily life too. I feel accomplished when I’ve helped with some chores around the home. I hope that when, at some point, my new day schedule is created, life’ll be a bit more fulfilling.

How I’m Feeling (Or Something Like It)

Posted on by Astrid
Daily writing prompt
How are you feeling right now?
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I’m not sure how I feel right now. It’s past 11PM and I badly want to write, but don’t have the slightest idea what about. That’s probably why I’m turning to the WordPress Daily Prompt, which is quite generic today if you ask me. Or is it? Maybe it’s just that I, being quite intellectually-focused, don’t know how to answer this.

Wait, I was an Enneagram type 4, right? I guess not. I’m perpetually confused as to whether I’m a 4w5 or 5w4. Maybe that means I’m some other type entirely. Or the Enneagram is just pseudoscience (which I know it is but feel in my heart that it’s not).

But I digress. I’ve been feeling all sorts of things today. In the afternoon, I rode the side-by-side bike to the next town to buy some groceries. I also bought a hand mixer and a baking tray, because next week I’m going to bake Biscoff blondies. This was a fun activity, so I felt good. Retail therapy, I guess.

In the evening, I felt overloaded because my spouse was telling me a story on the phone at the same time that a staff entered my room. This had me feeling stressed out for an hour or so.

Then I felt excited again, as I was going to craft a special coffee for my fellow residents and staff. It’s special because it had hazelnut-flavored coffee syrup in it and foaming milk on top. I’m no barista or even close, but I liked the activity. One of my fellow residents, the last time she got my special coffee, was over the moon about the “liquor” in it.

Now it’s 11:30PM and I’m probably supposed to be in bed, but I don’t really feel tired. I think I’m just going to read some more blogs and then go to bed.

Simple Pleasures #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “simple”. When I saw the prompt yesterday, I immediately thought I had to write about simple pleasures. You know, the little things that make life worth living when all else seems rather grim.

I could of course nag on about the cup of green tea. The one I got at 9PM one day over six weeks ago and that, while enjoyable, also triggered a flood of negative emotions because, really, is life all about a cup of tea? That being said, I’ve tried to make it a more regular habit to ask for a cup of tea at around 9PM.

Most of the simple pleasures I can think of right now, involve food, but not all do. Birdsong is also a simple pleasure I enjoy. So was a shower I took on Thursday when I was feeling particularly miserable.

As a multiply-disabled person living in an institution, I sometimes find joy in things that are out of the ordinary for me even though these things are normal for most people in my country and the rest of the developed world. They are, however, luxurious to people in less fortunate parts of the world. I also realize I am privileged to be able to go online when I want, as even in some other developed countries, people in the care system can’t. That doesn’t mean my life is easy. It’s not. I may have it better than people in many parts of the world, but that doesn’t mean my struggle isn’t real.

However, I do try to find positives each day. It sometimes feels like an obligation, because I used to be told all the time that I’m being negative on purpose. However, it does genuinely help me to acknowledge the simple joys each day provides.

Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.

When Pluto Was a Planet #SoCS

Posted on by Astrid

This morning, I read on a major Dutch news app that a dwarf planet had been discovered on the outskirts of our solar system, reducing the chances that there’s a ninth planet in our solar system to extremely low.

Wait… there are nine planets, right? That’s what I was taught in school and I’m not that old, am I? Or Maybe I am, since it’s been nearly 20 years since Pluto was officially declassified as a planet. It’s now a dwarf planet just like the newly-discovered one, even though Pluto is four times the size of this one.

That brings me to nostalgia in general. That time when Pluto was a planet, when there were 15 million people in the Netherlands… that’s a song, but there are now 18 million. I guess either time flies or I’m getting old or both, since there will always be 15 million people inn the Netherlands and Pluto will always be a planet. Oh, that’s rather ignorant.

This post was written for Stream of Consciousness Saturday, for which the prompt this week is “that time”. I’ve included the Spotify link to the song because YouTube doesn’t seem to work properly.

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.

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).

My 2024 #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “my year”. I don’t usually review my year until December 30 or 31 and, since this post is supposed to be stream-of-consciousness, I cannot do it now either. That being said, I can write down what my year reminds me of.

I am first reminded of the fact that I’ve been tapering my medication since the beginning of the year and am now 10mg down with my antipsychotic and completely off my topiramate. The taper could’ve gone faster had I not landed in crisis just before my first antipsychotic taper and had the behavior specialist not subsequently decided to do the “minute-effing”, by which I would have to compensate for every minute I was in distress during my unsupported time by having less support at my next moment.

The year also reminds me of my continual attempts to get actually reasonably good care, after that system of minute-by-minute compensating was abandoned in late March. I sometimes feel like I could’ve come across like a very hungry caterpillar, but so what? I don’t purposefully experience distress, as the powers-that-be used to think.

I’m also reminded that this is the first full year since 2021 that I didn’t move. Back in 2021, I told my care plan review that I was 95% sure that I wanted to stay in Raalte, but hardly a year after that, I was gone. I resolve for 2025 not to repeat the same mistake.

Overall, 2024 started tough but things have improved ever since. I can’t go into every detail of what I was struggling with in early 2024 and let me just hope and pray that 2025 won’t be the same. That is, improvement is always welcome, of course, but let’s hope and pray that early 2025 won’t bring a setback.

Everything Will Be Okay… #SoCS

Posted on by Astrid

This week’s prompt for Stream of Consciousness Saturday is “wish”. What a timely prompt, as we look back at 2024 and look forward to 2025. I don’t usually have any new year’s resolutions, like I say. Rather, I call them “hopes”. They’re just the same, like I say every year, but calling them hopes rather than resolutions gives me an excuse not to think about them again until the end of the year. Then, if I didn’t make any happen, I could say they were just hopes. Like wishes, they feel a bit devoid of reality sometimes.

I mean, for 2025, most people could wish for world peace. Not gonna happen, baby! In fact, as I read the news recently, I’m more and more scared that even in a country that hasn’t been at war in almost 80 years, we won’t see a full year of peace.

And now I’m scared that by voicing that fear, I’m single-handedly making it happen. That’s my twisted mind playing tricks on me though.

I do wish for there to be many more years in which this country can live in peace. I know that, in a similar way to what I said in my previous paragraph, my constantly saying that “everything will be okay in 2034”, when the “2034” aspect of it was based in a twisted way on the idea that World War III will start then, might be tempting fate. Thankfully, I don’t believe in manifesting in this sense. Besides, don’t many faiths believe in reversal of good and bad? Like, in the Christian tradition, there’s this thing about the first who will be last. Either way, I hope and wish that my twisted words about 2034 will indeed be true and everything will be okay.