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.

School Reunions

Posted on by Astrid

Hi everyone. One of this week’s Writer’s Workshop prompts is to write a post based on the word reunion. This reminded me of two reunions, one I actually attended and one I didn’t.

The reunion I did attend was for the school for the blind I had been a student at for my last three years of elementary school in the late 1990s. The reunion took place in 2008 and it was on school grounds. The reason the reunion was held, was the fact that many buildings would be reconstructed in the next couple of years, so as to give former students and staff one last chance to see school grounds in the form they’d remembered them.

The school included buildings for both elementary and secondary school, as well as homes for the residential students and a place for leisure activities where the non-residential students had lunch too. I was a non-residential student and only attended elementary school, like I said.

There were two reasons why I wanted to attend the reunion. One was to meet former fellow students and staff. That was a success. I met my best friend from school, with whom I hadn’t been in contact since leaving this school in 1998. I also briefly talked to my fourth grade teacher. That was awkward, as I didn’t feel comfortable disclosing to him that I resided in a psychiatric hospital at the time.

The other reason I wanted to attend the reunion, was to see the school in the form I remembered. That, unfortunately, wasn’t a success, because part of the elementary school, including the classrooms, had been destroyed in a fire in 2006. Part of the building was still standing, but it was no longer useable.

I was on grounds a few more times attending smartphone use training in 2017. On May 24, I believe, there’s going to be another reunion for this school, but it isn’t on grounds and I know no-one who will be attending, so I won’t either.

This brings me to my other reunion story. IN 2013, my high school celebrated 100 years of existence. I for a while considered attending, but was still in the psych hospital at the time and besides, my entire high school experience had been quite bad. So I didn’t go.

A few years later, I got an E-mail from a former teacher there. She had been my Dutch teacher and tutor for the first year and part of the second year of my attending this school, until she went on sick leave and finally found another job. She had been at the reunion and had wondered about me. Having read part of my website, she now understood why I hadn’t been at the reunion.

This, as it turned out, would also have been my last chance of meeting the teacher who’d become my tutor after the Dutch teacher left. He got cancer about a year after I’d graduated high school in 2005 and died in 2016. I am pretty sure it was for the better that he didn’t know that I was still in the psych hospital then.

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

Hi everyone on this last Saturday of March. I’m joining #WeekendCoffeeShare today. It’s nearly 8PM as I write this, so no more coffee for me. However, a fellow client’s parents brought us cheese, sausage and maybe other little snacks to go with our soft drinks this evening. I’ll have apple and peach-flavored Dubbelfrisss as usual. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been mild most days with daytime temperatures around 15°C, though night-time temps have been around freezing. We had a little rain on Sunday I believe, but I think that was before I woke up. Honestly, I’m pretty sure nature could use some showers.

If we were having coffee, then I’d talk about my physical fitness routine. I am still going strong with my goal of a perfect month on my Apple Watch and, on Thursday, got in over 20K steps again.

If we were having coffee, then however I’d moan about my tremors. I’ve mentioned a couple of times that my right leg trembles horribly sometimes and, usually when it’s been happening, the rest of my body follows suit and starts twitching. Yesterday, it was really bad. My intellectual disability physician usually says it’s most likely influenced by stress, though both of us know that my medication (particularly my antipsychotic) could be causing it too.

With respect to my meds, I’ve often been reacting out of fear of becoming unmanageable and for this reason asking for a very slow taper. My physician has been constantly asking whether my life will become more difficult soon due to for instance more temp workers, because apparently that’d be a reason not to taper further for a while. Now I’ve decided that being manageable is not a reason to put my body through the effects of strong meds. Besides, yesterday I had an aggressive meltdown precisely because I couldn’t cope with the tremors anymore. Now thankfully on Monday my staff will contact the intellectual disability physician, my GP or both.

If we were having coffee, I’d also moan about my shoes. I’d worn one pair of orthopedic shoes for only a week last Thursday and they were already badly damaged. The physical therapist took a look at them and said she thought the orthopedic shoemaker might not have done the last repair properly. I’m not sure that’s the reason they get damaged so quickly. On Friday though, the physical therapist came by and took a video of my walking, which she is going to compare to a video she took about half a year ago. I’ll see her again next Friday and hope she’ll have some ideas.

If we were having coffee, I’d share that I’ve been having bad memories of my time in the mental hospital. Like I said above, the intellectual disability physician here constantly talks about the possibility of more temp workers as an excuse not to taper my medication. This was precisely why I was prescribed medication in the first place: I’d become severely irritable because of the large number of temp workers at the time and my psychologist was threatening me with seclusion if I continued to have meltdowns. Similarly, when on the locked ward, I was literally told I’d be locked up in the “quiet room” if I needed more care than they could provide. I realize rationally that this is institutional abuse, but I’ve internalized a lot of all the bullcrap institutions feed me.

If we were having coffee, I’d end on a somewhat positive note by sharing that the behavior specialist finally filled out the forms to get the Center for Consultation and Expertise involved on my case.

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.

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.

How I Coped With Losing My “Job”

Posted on by Astrid

Hi everyone. This week, one of the prompts for Writer’s Workshop is to write an essay titled “How I coped with losing my job”. I don’t do well writing fictional essays and have never had a “real” job, in the sense of a paid position or even volunteer work. I did, however, once “lose my job”, in that I got told the day center I went to couldn’t keep me there anymore.

This happened sometime in January of 2018 at my first day center with my current care agency. They had had me there for eight months, in two different groups, but when I was struggling to cope at the second group, they could no longer serve me or so they said.

I felt really distressed about this. The most frustrating aspect was the fact that they blamed me for no longer being suited to the center, while in reality, three new clients had been accepted into my group and no additional staff had been hired. I remember the reason they said it was me being the problem, not the new clients, was the fact that I’d been having meltdowns shortly before they arrived. Now I know that any anticipated change will cause me distress and that doesn’t mean I’m just a problem client. However, in hindsight, I’m pretty sure they wanted me gone sooner rather than later all along, for the simple reason that I don’t have an intellectual disability.

Thankfully, I wasn’t told to leave on the spot, but got time to find a new place. I initially had no clue how to, but did remember that, in 2010, I had been helped by the Center for Consultation and Expertise (CCE). I told the staff that I wanted to involve them again.

This was a bit of a hassle, as my community psychiatric nurse from the mental health agency said I’m far too high-functioning for the CCE. I applied nonetheless and got an orientation meeting in May of 2018.

In the end, I didn’t need the CCE for finding a new day center, but the consultation was what led me to accept that living independently with my partner wasn’t working and I needed long-term care.

I did feel intensely frustrated, like I said, at being “fired” from this day center. However, in the end, I don’t blame the staff, who were just powerless in the face of my challenging behavior. I think the manager, who didn’t look beyond my psychiatric diagnoses, is partly responsible. So was the psychologist from the psychiatric hospital, who more or less made the manager accept me on partly false premises.

September Dreams and Memories

Posted on by Astrid

Last night I dreamt of being admitted to the psych hospital. It’s no wonder, since the anniversary of my actual admission isn’t very far away, on November 3. September 23 is my anniversary of going into long-term care and last Wednesday, I celebrated one year in my current care home.

I was reminded yesterday that September is a bittersweet month. That is, I was reminded of the sweet aspect, ie. it being me and my spouse’s wedding aniversary yesterday. The bitter aspect has overshadowed my days with flashbacks and my nights with dreams more than I’d like. I am, thankfully, still coping.

I am hoping that, as I acquire more pleasant memories here at this home, the flashbacks and nightmares will lessen. I know I was saying something similar when reclaiming November in 2021. I hope this time around I will choose following my dreams and aspirations over re-enacting the past.

Sharing this post with Friday Writings #145, for which the optional theme is dreams and memories. This was more of a freewrite than anything else, but oh well.

Phones #SoCS

Posted on by Astrid

Today’s prompt for #SoCS is “phone”.

I’ve had an iPhone for just over seven years now. Before that, I had a sturdy regular cellphone. I once had the earliest model of a smartphone-like thing, a Nokia 6230i, but I could still only use it to make calls. I got it with my then new phone plan because I wanted to make use of a scheme by which cellphone calls would be charged landline fees. Remember, it was 2007, so cellphone rates were still very high and I didn’t have a landline. That is, I wanted to get one while living independently in Nijmegen but had just got it installed when I landed in crisis. I in fact had my home phone that I intended to use in my apartment with me when I was hospitalized.

The reason I could only make calls with a phone that was almost a smartphone, is the fact that it didn’t have MobileSpeak, the earliest excuse for a phone screen reader, on it and it couldn’t get it installed even if I wanted to. I’m surprised at how things have changed. Then again, I really shouldn’t be surprised. Life progresses, after all.

My current iPhone, I use for all kinds of things, almost like a handheld computer. That is, not actually almost, really, since I don’t even take my iPhone with me when I leave my room. I really want to do that more, so that I can take pictures when I notice something interesting. Like the rainbow my staff saw a few days ago. I really wish I’d had my phone with me then.

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”.

The Wednesday HodgePodge (November 1, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday once again, so I’m joining in with the Wednesday HodgePodge. Here we go.

1. Besides Thanksgiving (in the USA) what’s one thing you’re looking forward to in November?
Not sure really. November is the hardest month of the year for me. My spouse’s birthday is this month, but I won’t be going to our house in Lobith for the weekend. I’m pretty sure we’ll find a way to celebrate though and that’s what I’ll be looking forward to.

2. Do you like candles? Your favorite scent? How often do you burn a candle in your home?
No, I don’t. They’re not safe for me because of the flame. I used to love wax melts though. My favorite scents were sweet scents reminiscent of bakeries like those including vanilla, cinnamon and coconut.

3. What gadgets did you use today?
My laptop, iPhone and Apple Watch.

4. This question is a repeat from one asked in November of 2014, but I liked it so it’s coming round again. Many of you weren’t here in 2014. Okay, you can have fifty pounds of something (anything but money)…what will you choose? Also, since I mentioned it…what were you up to in November of 2014?
Fifty pounds of polymer clay LOL. Then I could make some giant unicorns. Seriously though, I have absolutely no idea what substance it would be useful to have fifty pounds of. Except maybe gold so that I could trade it in for money, but that’d be cheating.

As for where I was in November of 2014, I was in the psychiatric hospital in Wolfheze. If I remember correctly, the psychologist who ended up kicking me out of there in 2017 had just become my responsible clinician.

5. ‘Tis the season…what’s something you’re feeling especially grateful for today?
My mental health. It’s November and I’m struggling, but not nearly as badly as I was last year.

6. Insert your own random thought here.
As I shared yesterday that I hoped I wouldn’t have gained significantly at my weigh-in today, I owe you all the result: I lost 0.5kg.