Tapering My Meds… in 2034?

Posted on by Astrid

Hi all! One of this week’s Writer’s Workshop prompts is to write a post based on the word “medications”. I will probably have another med review with the intellectual disability physician in a few weeks. The aim for me has always been to taper my medications. This will probably take until 2034 and this time my use of the year 2034 is only partially a joke. After all, when I said that “everything will be okay in 2034” and explained to the physician that I always say “2034” when I mean “never” (because of the fact that the book by this title is about World War III), the doctor didn’t understand the joke. She actually seriously said that I’ll be on the right med regimen by 2034.

Like I said, I’ll have another meeting with her to discuss tapering my meds in a few weeks I think. Although I’d really love to decrease my medication dosage sooner rather than later, I do realize that I’ve been struggling more than usual lately. I haven’t shared about this on the blog much, but over the past several weeks, I’ve had emotional outbursts almost every evening. Part of the reason is the fact that there were quite a few temp workers assigned to me. Thankfully, as of yesterday, it was agreed that the staff will no longer send unfamiliar temp workers to me. I am very happy about this.

However, I am also concerned that the temp workers might just be the reason my already irritable brain chose to act out. In other words, it could definitely have been the case that my latest med taper wasn’t all that sensible. For this reason, I have pretty much made up my mind that I will not take another step until January or so. That way, I’ll be able to give the new agreement about no unfamiliar temp workers a fair chance. All I can hope for is that, if I tell the physician I want a break, it won’t end up being an end to it all.

After all, I do still experience significant side effects from my medication, like what I think could be a movement side effect from my antipsychotic (significant tremors and twitches) and I don’t want this to end up being permanent. This is another reason I don’t want to seriously wait for 2034 to be off my antipsychotic. By 2034, I’ll be 48 and that’s too young for crippling movement disorders.

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.

Flash Fiction: Don’t Forget the Veg…

Posted on by Astrid

As Joel looked through the kitchen cupboard this evening, what he saw could best be described as “organized chaos”. Oh wait, no, it wasn’t even organized. Just chaos. Like his life.

Joel hated cooking, cleaning and budgeting, but he had to since being leftt to fend for himself at barely sixteen. His mother had abandoned him and his two younger siblings. He had a side job that he went to after school, but money was tight.

Thankfully, he was inventive. Joel managed to whip up a meal for the three of them tonight. It was just pasta, ketchup and kohlrabi, but with an added multivitamin for all of them, this had to do. Besides, no-one could accuse him of forgetting the veg…

This little piece of flash fiction was written for this week’s Friday Fictioneers. I had the image described through my screen reader’s image description option.

The pasta, kohlrabi and ketchup meal was invented by my partner one day when we were spending a Sunday together and every supermarket was closed. We joke that it’s the most delicious meal I’ve ever had.

#WeekendCoffeeShare (November 16, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again. It’s nearly 9PM, so no coffee for me. I might make myself a cup of bedtime tea once I’m done with this post (or rather, have the staff make it for me). There’s of course always water too. Let’s chat.

If we were having coffee, first I’d talk about the weather. We’re still having an unusually mild fall season, with daytime temperatures at or around 10°C all week. We were supposed to get rain today, but I haven’t felt any.

If we were having coffee, I’d tell you I’m still struggling, but not as much as I was last week. On Tuesday, I spoke with my support coordinator and explained why I felt the Center for Consultation and Expertise may be able to help. She didn’t really respond, but I’m hoping she’ll take things up with the higher-ups.

If we were having coffee, next I’d tell you I’ve been learning more about autism and ways to support myself and for my staff to support me. There’s this support method called The Essential 5 in English. It was originally developed here in the Netherlands by Colette de Bruin and here has the catchy name “Geef me de 5” (which translates to high-five in English). I hadn’t ever remembered the essential five correctly, but they’re ways in which one’s activity should be structured: What, When, Where, Who and How. If there’s no “What”, as in my day schedule’s “alone time” or even during my supported activities (because I have to choose one on the spot), how can the other four be clear? This is something I struggle with a lot, as now with the shifts assigned to my day schedule, the “Who” is often too rigidly clear but there’s still no “What”.

I listened to a podcast episode by Geef me de 5 on empty time and autism and had a staff listen to it with me too. It was very eye-opening.

If we were having coffee, then I’d tell you that, on Tuesday, I went to me and my spouse’s house for my spouse’s birthday. We also stopped by Ikea and my in-laws’ house. We originally wanted to order pizza or fries, but both the pizza place and the snack corner were closed. My spouse eventually put fries into the Airfryer.

I also took a few things from our house back with me to the institution. First were a number of mounted rubber stamps I used to use for card making. I’m not 100% sure what to do with them now, particularly since most have old ink on/in them, but, if I can clean them, I can re-use them for stamping on polymer clay.

Then I also took a jewelry box with me that contained a number of rings, bracelets and necklaces. One of them was the ring with an amethyst in it that was passed down to me from my late grandma. Unfortunately, that one, as well as most other rings, are too big for me.

If we were having coffee, I’d share I have a ton of creative ideas floating around in my mind, but struggle to get to actually starting any of them. For example, I want to start making my own jewelry again, particularly bracelets and necklaces. I am still in doubt as to whether earrings are suited for me at all, as sooner or later I’ll almost inevitably develop an itch from them.

Anyway, I remember how I used to enjoy making jewelry and I think that with my current day schedule and staff, I should be able to pick the hobby up again.

So far, I did create one polymer clay pendant. I think I like it quite a lot, but still need to sand it before I can actually use it.

If we were having coffee, lastly I’d share a nutrition and exercise update. I saw the dietitian on Wednesday and endured the mandatory talk about all the opportunities to snack and get treats during the holiday season. Quite frankly, if I’m in the mood for snacking, I don’t care whether there’s a festive reason for it. I’m also happy to report I’m still on target weight-wise and intend to keep it this way.

However, I haven’t been all that physically active over the past week. I did meet my goals on my Apple Watch, but things could’ve been better. On Thursday, I had an opportunity to go swimming, but I felt too tired. I now remember that I was supposed to do my physical therapy exercises this afternoon but forgot. Going to do those now!

#WeekendCoffeeShare (November 9, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I apologize for not having commented on anyone else’s posts last week. As I write this, it’s 5:15PM, so I’ve just had dinner. I won’t have my next cup of coffee until 7PM, but at least I’m not writing that it’s too late at night for coffee for me. Let’s have a drink and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s quite chilly, though most days the daytime high is still above normal. Most days, it’s been around 10°C, but yesterday the temperature didn’t climb above 6°C. We haven’t had more than a slight drizzle of rain.

If we were having coffee, I’d share that I’ve been doing okay in the health and wellness department. I walked everyday, though not as far as I’d have liked. I also downloaded the FitOn app onto my iPhone and did a workout on it yesterday. My eating has been okay and I lost half a kilogram over the past week. Sleep has been all over the place though.

If we were having coffee, next I’d share that this week has been tough. You might remember that I shared several months ago about the improvements to my care that would take effect in mid-October. Some did happen indeed, while others didn’t and the end result is that my quality of life isn’t improving.

Part of the problem is the fact that half the team rigidly shove the new rules down my throat and the rest do as they please regardless of what my new day schedule says. For example, in my new day schedule, there are now shift codes assigned to times my staff are with me, so that it’s hopefully clearer for everyone who will be supporting me. Some staff have been rigidly following the rules, while others changed things up, sometimes at the last moment. Most staff also don’t tell me who has which shift a day in advance, yet when I am supported by a staff one day who rigidly follows the rules, they’ll tell me that so-and-so will be supporting me half an hour in advance and not care that I didn’t know the day before because their coworker didn’t tell me. And they’re unwilling to change things up because the day schedule says they can’t. This means I’ve had to deal with new-to-me temp workers three times this week and, at least once, I wasn’t told the day before that they’d be supporting me. This led to me having an outburst and telling my staff that I didn’t want the temp worker. I wasn’t demanding someone else, for clarity’s sake, but the temp worker refused to leave me alone too, despite the fact that I’m not under involuntary care.

There were other things discussed at the meeting that these rules were decided at, but I don’t see these being implemented at all. For this reason, my trust in my support coordinator and behavior specialist has suffered again.

If we were having coffee, finally I’d share that I had a phone appt with an independent client supporter on Tuesday. This appt had been on the calendar for months and I originally intended to say it’s all fine here and to close my file at her agency. That’s not how it went: I was honest that, while I do see my staff have good intentions, it’s still proving hard to figure out the care I need and to make it work with the way the home works. She recommended involving the Center for Consultation and Expertise (CCE) again. This is an organization that helps care agencies and clients when they’re stuck.

I have mixed feelings about this. On the one hand, I am hopeful that an external organization can shed new light onto the situation or, if not, I’m able to accept that my home are doing all they can. On the other hand, I feel slightly guilty for not being able to suck it up when things seemed so positive at the meeting. Hope is the dominant feeling though.

Variation and Deviation: What Is Typical vs. What Is Desirable

Posted on by Astrid

For today’s Friday Faithfuls challenge we’re encouraged to write about what “normal” means to us. I am reminded of the opening phrase to one of the Project 2025 training videos. Mind you, I didn’t see the actual video, but listened to an episode of the podcast, The Ace Couple, walking the listener through it. The goal of the video was to educate Project 2025 supporters about the language leftists (and presumably anyone else not in agreement with their garbage) use and what we (yeah, I’m one of those pesky leftists!) supposedly mean.

The opening phrase was: “I’m just a normal American woman.” The speaker then went on to describe what she supposedly would be called by the Left. The exact wording, I can’t remember but it included “cisgendered” (her words, never mind that it’s “cisgender” without the “-ed” ending), “ethnoimperialist” (a term I’ve never heard of but then again I’m white and assume this is just a parody phrase to say she is too), probably “heterosexual” and “pronouns she/her”.

Now what’s “normal” about all this? Statistically speaking, being straight and cis (which means, for those not aware, that your gender assigned at birth aligns with your gender identity, so the opposite of trans) are indeed “normal”, in that the vast majority of the population falls within this category. White, globally speaking, definitely is not: the majority of the world’s population are BIPOC (Black/Brown, indigenous, or people of color).

I was also reminded of an open discussion I had several months ago with a temp worker who happens to be gay. We were discussing sexual and gender diversity and relating it to neurodiversity. The neurodiversity movement says that autism and other neuropsychiatric conditions are merely a variation of the norm, not a deviation from it. The difference is that variants are statistically less common but not less valuable, whereas deviants carry a connotation of “less than”. Autistic/neurodivergent people are different, not less in a similar way that people under the LGBTQ+ umbrella are different, not less.

Now I would like to say that no-one is “less” as a person. However, some human conditions, traits and behaviors are both abnormal and undesirable.

I do understand that what are considered “deviations” from the norm rather than mere variations, changes over time. Autism, commonly, is still seen as a disorder in need of a cure and there’s hardly any protection against discrimination based on it. Homosexuality, thankfully, not anymore. At least, not in the Netherlands. This doesn’t mean gays don’t face discrimination, but in that case, society sees that it’s the person being homophobic who’s in the wrong, not the gay person.

I am a strong supporter of both neurodivergent and LGBTQ+ rights, and a member of both communities, for clarity’s sake. Though I am white, I try to learn about race issues. I may not statistically speaking be “just a normal woman” and thank goodness in this era I’m not American. However, I am a human being and this means I deserve human rights.

#WeekendCoffeeShare (November 2, 2024)

Posted on by Astrid

Hi everyone on this first Saturday of November. I’m joining #WeekendCoffeeShare today. Can I offer you a drink? Let’s catch up.

If we were having coffee, first I’d talk about the weather. The daytime temperatures have been between 13°C and 16°C this week. We got a little rain here and there, but for the upcoming week, no rain is in the forecast. Daylight saving time also ended last week, so it’s now dark by 5:30PM. If you know me, you know I seriously hate this with a passion.

If we were having coffee, I’d tell you that I haven’t been walking nearly as much as I’d have liked. I didn’t even close my activity rings on my Apple Watch each time this week. Yesterday and today have been quite good though. I signed up for a month-long challenge in the Challenges app, but I honestly don’t think I’m as interested in it as I was the last few times I participated.

On Thursday, I wanted to go swimming, but we arrived at the institution pool only to find out it was closed.

If we were having coffee, I’d share that, as regular readers of my blog know, this time of year is hard for me. Today marks 17 years since my major mental breakdown. I could try to reclaim the month by creating positive memories, but the last time I wanted to do this, I couldn’t make it last beyond that one November. I’m fully intending to stay at my current home for a long while and I can see my staff fully intend to help me in this process, but then again intentions aren’t enough.

If we were having coffee, I’d expand on this further by saying I’ve been quite a pain in the butts of my staff lately. I can honestly see why: I’m (subconsciously) pushing their limits because I think (know?) that, when I’m truly myself, they’ll kick me out. Knowing that abandonment feels safe to me because it’s what I know, unfortunately doesn’t make it any easier to change my actual actions, because when I’m dysregulated, I don’t realize I’m projecting my own fears onto my staff.

If we were having coffee, lastly though I’d tell you about the positive aspects of the past week. Firstly, I went to markets twice this week. Secondly, I tried my hand at creating a little Christmas wreath out of polymer clay. I’m not one to plan my crafty endeavors and in fact I have the snowman I crafted nearly two years ago on display year-round. I really hope to craft a few more little decorations before Christmas truly starts in early December.

Moon Phases and Seasons

Posted on by Astrid

I, being blind, haven’t been able to see the moon in at least a quarter of a century and for most of this time, I didn’t pay much attention to its existence. I didn’t have a clue which phase the moon was in until a year or two ago, when Apple introduced moon phases as part of its weather app. Even then, I saw the moon phase as just some random factoid I liked.

That is until a few months ago, my staff told me about a fellow client who is usually very cognitively impaired and withdrawn but lights up significantly during the time around the full moon. I haven’t yet figured out whether moon phases impact me too, but I wouldn’t be surprised if they did. I’m just not as aware of the moon because I can’t see it.

Which brings me to the topic of seasons. Fall here has been incredibly warm and I’m struggling to conceptualize the fact that it’s late October. I can still see whether it’s light or dark outside when I’m actually outside, but I am starting to struggle more with the concept of seasons. I do still know that it’s late October, but I don’t “feel” it, if this makes sense. I don’t know how much of this is my blindness and how much, if anything, is cognitive decline.

I’m sharing this post with Friday Writings, for which the optional prompt is the moon. Yeah, I know it’s Sunday, but who cares?

#WeekendCoffeeShare (October 12, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s nearly 9PM, so long past my last coffee break for the day. However, I’d be happy to pass you a virtual mug of your favorite beverage. My spouse is in search for pumpkin spice latte. Since my blog readership is mostly international, I doubt anyone could recommend a place to find it tomorrow local to here and my spouse can do a Google search too. Anyway, let’s have a drink and let’s chat.

If we were having coffee, I’d start by sharing about the weather. It’s been quite cool with daytime temps below 15°C most days. Today, the daytime high was as low as 12°C. Brrrr! We’ve also had some rain, though none today or yesterday. Next week, we’re supposed to get one day with a daytime temperature of 21°C. Sadly, rain is in the forecast then too.

If we were having coffee, I’d share that, this week, I did okay with my exercise. I didn’t meet my goal everyday, but I don’t care.

On Thursday, a staff and I were riding the side-by-side bike to a nearby town, so that I could pick up a package. (As regular readers of my blog know, package delivery to the institution is hit-or-miss, so I set up a pick-up point in the nearest town as my default delivery address with DHL.) The road leading directly to the town was under construction, so we headed another way. When we were in the next village, the bike got a flat tire. The staff called the home to have someone else pick me up by car and he himself walked to the care home with the bike. It’s really frustrating, because this bike had just had major repairs.

If we were having coffee, I’d share that I did pick up the package yesterday. When in that town, we noticed it was market day. We decided to get some fried fish. Then, when coming to another stand, we heard something about an offer by which, if you’d bought something from four vendors, you could draw a prize, like a voucher. We went back to the fish stand and asked for them to sign our card too. I visited the fish stand like I said, the veggie/fruit stand (where I bought raspberries and lemons), the nuts stand and the olive stand. I then went to draw the prize and it was a €5 voucher. I spent that on licorice. Of course, most food at farmer’s markets is more expensive than at the supermarket, but I love the experience. By the way, if anyone has any ideas for what to do with lemons, your suggestions are welcome. I thought many smoothies had fresh lemon juice in them, but only a teaspoon or so and I have six lemons.

If we were having coffee, I’d tell you that I did a lot of baking over the past week. On Tuesday, I tried baking cookies from a store-bought mixture, but those didn’t turn out good. I then decided to give cookie baking another try on Wednesday, making the cookies from scratch. That was much better! Finally, today, I baked a cake. Don’t tell my dietitian, as I’ve probably gained weight. Weight management can wait.

If we were having coffee, lastly I’d tell you that I got a new day schedule. It doesn’t look much different, but there are some significant improvements. For example, it’s now clear who will be supporting me during the day. The weekend schedule is also now the same as the weekday schedule. I haven’t yet read the schedule myself and, judging from what the staff are saying, it does need a few small tweaks. I’ll discuss this with my assigned staff soon.

Speaking of which, I got a new second assigned staff. I have had one staff as my assigned staff for a few months, but she only works one or two days a week. I now got one of the student staff as my secondary assigned staff. I think she’s quite good at her job despite just starting out.

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.