March 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of the month, so it’s time for my monthly reflections. As usual, I’m joining #WBOYC.

This month was really tough. I started it with second-degree burns all over my left upper leg because of a self-harm incident the night of February 29. Thankfully, the wounds have completely healed, though last Tuesday, a staff who doesn’t come here regularly and hence saw my leg for the first time since it had happened, was a bit shocked anyway.

I have now been on my lower dose of Abilify, my antipsychotic, for a full month too, since I started that on March 1. I told my support coordinator that, for now, I’d like to remain on this dose and not go down further, even though it’s definitely not an ideal dose. Honestly, right now, I’m pretty sure it’s the least ideal dose I could be on, as I’m still experiencing daytime sleepiness but also significantly increased irritability. However, I don’t want to go back to my old dosage, which was causing more sleepiness, and I fear I might become unmanageable on a lower dose. We will re-evaluate in a month. Let’s hope the increased irritability is temporary.

Like I mentioned a few times over the past month, there was this horrible compensatory system, by which every minute I’d come out of my unsupported time in distress would have to be compensated for. It has caused me intense distress and was eventually revoked. However, I’m nowhere near my old self. Then again, my “old self” was lying in bed far too much.

Today, I got more bad news: my support coordinator is leaving in mid-April. I don’t know the other support coordinator, who will temporarily be coordinating the care for both sides of the home until a new support coordinator has been found and trained, that well, but she sounds okay. I do feel relieved that I’m no longer solely dependent on my male assigned staff but have a female one too. Okay, she only works one or two days a week, but at least she’s there.

Over the past week, the only positive I can report is that I’ve been able to walk more and, as a result, close all of my activity rings on my Apple Watch each day.

I didn’t create that much out of polymer clay. Honestly, the only thing I can think of having created this past month is an orange unicorn that I didn’t even feel like photographing. I tried my hand at earrings once, but ended up incorrectly explaining to my staff how to drill the hole into them, so I threw those away.

I did cook macaroni for my fellow clients once. I also went to the day center’s tiny gym room, but that was stupid. It only had strength training equipment other than a broken stationary bike and the strength training equipment couldn’t be adjusted.

I did read a lot, mostly children’s books about unicorns. I started in the Unicorn Academy series, which I love but unfortunately isn’t on Bookshare. I’m still debating whether I want to actually buy more of the series. I also have been reading foster care memoirs.

I only posted eight blog posts (I think), including this one. I will, however, aim to participate in the #AtoZChallenge in April. I don’t have a theme, but will go with random reflections. And yes, I have a topic picked for the letter X, in case that’s going to cause me to quit yet again.

Ways In Which I Was Not a Typical Teenager

Posted on by Astrid

Hi everyone. Today’s Word of the Day Challenge is “Teenager”. This reminded me of a question a fellow blogger, I think it was Emilia from My Inner MishMash, once asked: in what ways we were not like a typical teenager.

This post could have been a lot shorter had I had to answer in which ways I was like a typical teenager. After all, I wasn’t like a typical teenager in any way. That doesn’t mean I didn’t try. Like, I pretended to be a Backstreet Boys fan even though I knew next to nothing about them and had hardly heard their music. I also pretended to have crushes on boys (and girls) even though I hardly knew them and quite frankly didn’t understand attraction.

I tried going to school proms the first few times in high school, but didn’t fit in at all. I also tried wearing what other girls my age wore. My mother asked my younger sister for advice when clothes shopping for me. However, somehow I always missed the mark. I couldn’t wear makeup nor was I interested in it.

With respect to interests, I have no idea what teenagers in the early 2000s were into. I did read what I assume was somewhat popular Dutch YA fiction, but had no friends so couldn’t discuss it with them.

With respect to socially appropriate behaviors, I was way off. Still am. I didn’t know how to take care of my personal hygiene, for example. I remember my sister gave me a deodorant as a birthday present when I turned fourteen, but I didn’t get the hint. Months later, when my teacher reminded me about hygiene because my classmates had been complaining, I still had no clue what an appropriate bathing and personal hygiene routine was.

Back in the day, most teenagers drank alcohol. I tried wine at home when I was fifteen (the legal age for alcohol consumption was sixteen at the time). When I was sixteen, I went out to a pub with a few classmates. I had two beers, the most alcohol I’ve ever had in a single sitting. Later that evening, a guy we were with from another school offered me and another girl in my class some pot, which we accepted. Since I hadn’t smoked beyond a whiff here and there, I probably didn’t inhale anything, as the stuff didn’t have any effect on me whatsoever.

Where it comes to Internet and social media usage, I was probably a rather naive teenager. I wrote posts like this one about my current rather than past life in my public online diary using my full name (I do think it’s still on this blog somewhere too). Not only did I not take my own privacy seriously, but I used teachers’ and other people’s full names when writing about them too. I’m so happy none have ever made a serious problem out of it and I also haven’t been the victim of online predators. That being said, I wasn’t one to make obscene comments, like some other people my age did back in the day using their full name. I would also panic when I accidentally clicked on something that might be unsuitable for minors.

In summary, in many ways, I was like a child in a teenage body. I still often feel like a child in an adult body, truthfully.

To Freewrite vs. Free to Write #JusJoJan

Posted on by Astrid

I started and restarted this post several times. I really want to broaden my horizons in the writing department. To write more, but also to write more outside of my comfort zone. In a way, I want to experience the freedom I experienced when crafting my independently-created unicorn in the writing process too.

But, as with my crafting, in the writing department, fear is holding me back. Specifically, the fear of failure. The fear of my posts not being read, not being appreciated, getting zero likes or comments. If I don’t get any engagement, why bother blogging, after all? I could just as easily keep a private journal in Day One.

Then again, even in Day One, I censor myself when writing. Even where no-one reads my writings except for possibly my future self, I’m constantly telling myself I’m a bad writer, constantly editing out mistakes or “inappropriate” wording. Yes, I even did this with my Morning Pages back when I did those several times over the past couple of years.

Is it, however, really that I’m looking to freewrite? Or is it more that I want to be free to write? What’s the difference? Well, this is a freewrite.

However, there are other ways in which I let my censor, as Julia Cameron calls it, dictate what I can and can’t write. So many in fact that I hardly write self-growth posts anymore because these don’t get much engagement, even though these are the posts I sometimes feel inspired to write. When I am free to write, I write what I feel inspired to write even when this isn’t a huge success by externally-determined standards like my stats. And who knows, maybe it will be a success someday.

This post was written for today’s #JusJoJan prompt, which is “writing”.

The Wednesday Hodgepodge (January 3, 2024)

Posted on by Astrid

Hi everyone. It’s Wednesday, so I’m back joining the Wednesday Hodgepodge. I love this week’s questions, even though I’m pretty sure most came along during the first Hodgepodge of 2023 too. Here goes.

1. Every January 1st since 1976 Lake Superior University has published a list of words they’d like to see banished from the Queen’s English. Words may be banished due to misuse, overuse or just general uselessness. Here are the words/phrases they’d like to see banished in 2024-
hack, impact, at the end of the day, rizz, slay, iconic, cringe worthy, obsessed, side hustle, wait for it
Which of these words/phrases would you most like to see banished from everyday speech and why? Are any of these a regular part of your speech? Is there a word not on the list that you’d like to add?
I don’t care for the term “side hustle”. Other than that, I don’t really think any of these words/phrases are particularly cringe worthy (pun intended). I do use “at the end of the day”, but not any others out of this list. That doesn’t mean I don’t misuse or overuse words a lot. Think “particularly” above.

2. What do you wish you’d done more of last year? Less of?
More of: writing, both on my blog and in my journal.
Less of: worrying.

3. A place you’d like to visit in this new year? Do you think you will?
I really don’t know. I have no travel plans and actually don’t care for vacations.

4. What are three words to sum up or describe your 2023?
Emotional, stressful, hopeful.

5. What advice would you like to give yourself as we begin a new year?
Be open to the possibilities that come your way.

6. Insert your own random thought here.
I have been trying out the WordPress block editor, because I wanted to participate in #Bloganuary. So far, it’s still quite the learning curve and I’m happy the classic editor is still available. In fact, I doubt I’ll move over to the block editor full-time anytime unless I’m forced to. However, I’m glad the two posts I wrote using the block editor haven’t been ruined (yet) or disappeared altogether, like happened to some I did several years ago.

My Hopes for 2024

Posted on by Astrid

Hi everyone. As regular readers of my blog know, I don’t do New Year’s resolutions, instead calling them “hopes”. This is just an excuse not to have to take responsibility, I guess, but oh well. I love writing them and looking back at them after a year to see how well I did. Last year, I did participate in #WBOYC, of course, but honestly I never looked at my hopes for 2023 when doing my monthly reflections. Oh well, maybe my first not-quite-resolution has to be to look back at this post when reflecting on the month. Here goes.

1. Get back on track with respect to healthy’ish eating. I did manage to get to a healthy BMI in 2023. That is, I’m pretty sure with all the New Year’s treats, including more “oliebollen” than I told my dietitian I liked, I’m now back across the line to overweight (I was only half a pound below that line last week). I know that with some cutting back on snacking, and it doesn’t even have to be drastic, I can lose the excessive pounds I gained over the holidays. More importantly though, for the remainder of the year, I’d like to maintain a relatively healthy diet. After all, sugary ttreats and high-fat foods are bad for you even if you’re at a healthy BMI.

2. Get back into a regular movement routine. Though I did excellent for the first half of 2023 and pretty well for most of the second half too, like I said yesterday, I wasn’t moving as much over the past month or two as I would’ve wanted to. This year, I obviously hope to meet my movement goal each day, but I’m not sure that will be a realistic goal, as it wasn’t in 2023 and that’s not just because of lack of motivation. I’d also really like to find another way of exercising besides walking, either swimming again or something else. I seem to remember we do have gym equipment somewhere on institution grounds, so maybe that’s an option.

3. Write more regularly. Last year really sucked in the blogging department. I really hope to change that and get back on track with blogging more often.

4. Broaden my horizons in the crafty department. I hardly touched on this yesterday, but the last couple of months were really positive in this respect. For one thing, I started creating figures, such as the gnome and Santa, without consulting YouTube tutorials. For another, on Saturday, I did something really cool: I crafted a unicorn completely independently! I did initially leave black streaks on the head from touching it while trying to attach the eyes, which the staff had to clean up with alcohol. Other than that, I did everything completely without supervision or help.

In 2024, I really hope to be more creative, try out more things on my own (without the expectation that I’ll lose my one-on-one) and generally have more fun claying and maybe doing other crafty things.

5. Explore other day activities. In 2023, I wanted to expand my horizons with respect to my day schedule, moving beyond 60 minutes at a time, beyond my room and beyond one-on-one. The first was a massive success, as I now have a great day schedule (which of course took me moving out of the home I lived in last year, but oh well). The second and third, I’m not 100% sure I want to achieve, actually. Rather, I’d like to explore meaningful activities, whether these can be done in my room or elsewhere, on my own, with my one-on-one or in a group.

6. Get settled into my current care home, generally. I really hope to get more comfortable here and start building up a trust-based relationship with some staff.

7. Improve in the mental health department. This, for me, means stabilizing with respect to my trauma-related symptoms. It also means getting closer to a proper med combo and dosage. In 2023, I didn’t change any of my meds or dosages, which was frustrating as I did notice some increase in possible side effects. I’ll have a meeting with the intellectual disability physician to discuss my meds on the 15th.

8. Continue to work on my relationships and supporting the people I love. Particularly, my marriage evolved in a positive way in 2023 and I would really love to keep it as strong as it is going forward.

What are your hopes for this year?

2023: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year. I am dealing with a nasty cold and very much overloaded by the early fireworks. I really expected the institution town to be quiet, but it isn’t. Regardless, my sense of duty is stronger than my wish to crawl into bed with a PRN tranquilizer and that sense of duty tells me I need to review the past year. So here goes.

I started out 2023 cautiously optimistic. I mean, I admitted in my hopes for 2023 that my day schedule, though better than the one my then support coordinator had given me, was far from ideal. In the months that followed, it would turn out that “far from ideal” was really a euphemism and that the intensive support home wasn’t suitable for me. I know my staff there blame my critical attitude, but honestly my current day schedule is pretty much ideal and, moreover, at least my staff try to think in terms of validating my needs rather than fueling competition for care.

By late January, I had pretty much decided I didn’t feel I could live in the intensive support home long-term, but it took till mid-March for a meeting to formally make the decision to start moving plans again. Then I waited two months before hearing any steps had been taken, then another two before that awesome E-mail from my now assigned staff to my mother-in-law asking what color of paint I wanted on my wall.

In the meantime, I didn’t sit still, though sometimes it felt like it. I indeed wasn’t as active as I was during 2022. I participated in the April #AtoZChallenge on my blog, which was really my only active month this year.

I also helped set up swimming for the intensive support home. After all, the idea to ask the institution pool whether they had a time slot for me and a staff to try out swimming, came from me, and then it turned out this time slot wasn’t available just once, but each week.

For the most part though, over the spring and summer, I struggled. It didn’t help that my support staff came up with the conclusion that I got more one-on-one support than I was getting funding for. This led to regular arguments with my former staff about how to cut those hours once I moved.

When I actually moved and my hours had to be cut, the staff soon enough figured out that this wasn’t a viable situation. Thankfully, I got my hours back, first through my care agency and then through funding from the Care Office.

Once this had been sorted, my life significantly improved. For one thing, I was spending more time creating things out of polymer clay. I also explored other activities, such as baking.

In the health department, 2023 was a mixed bag. I did reach my goal of getting to a healthy BMI, but over the past couple of months I have been struggling to get in the movement needed to meet my activity goals. That is, I haven’t met my movement goals several times this past month. One reason is the weather and the fact that, now that I’m at my current care home, I cannot (yet) go swimming regularly. Another factor though may be the fact that I’ve lost weight and haven’t adjusted my movement goal accordingly. Still another factor may be laziness though.

Lastly, 2023 was the year I left Christianity for good. I mean, I’m still spiritual, but I don’t care for a God that condemns the vast majority of people to eternal suffering, many of whom simply for being themselves.

I Am My First Priority: Intentions for Focusing on My Quality of Life

Posted on by Astrid

Hi everyone. I paged through The Goddess Journaling Workbook again yesterday and saw the first prompt: “I am my first priority”. Okay, I did write about it already back in 2020, but I think I need to revisit it and set intentions for putting myself first. I know, we are often taught, especially in more conservative circles, that we need to put others first (or after Jesus, but ourselves last, in any case). Then some more leftist folks teach us about self-love as if it’s about essential oils and vegan smoothies. Which it could be, but this is not what I mean. Rather, self-love means being true to our own values over those imposed upon us by others. And that doesn’t need to be selfish.

Now of course I need to determine my values. I’ll narrow those down to what my major point is for being in care, ie. my main goal. This is quality of life. This may be obvious to most people who aren’t involved in the care system and it should be obvious to those who are too, but for many, the presumption of competence or the need to manage daily crisis behavior clouds their vision towards quality of life. In fact, I’ve even seen one care agency state that their aim is to “maintain and where possible promote” quality of life in their clients. Well, this is wording I’d expect to go with “independence”, not “quality of life”, since truthfully, quality of life can always be promoted.

So what does quality of life mean to me? It means that I decide what I spend my limited energy on. This doesn’t mean lazing around all day doing nothing and it doesn’t mean I won’t ever improve on my ADLs at all either. What it means is that I take the lead, focusing on my daily level of energy. I told one of my staff the other day that I would prefer if she doesn’t tell me to do something independently, but rather invites me by asking me whether I want to do it independently. In that case, she’s much more likely to get me to actually do it, as I don’t feel the pressure of her expectation, because I can say “No” if I don’t have the energy at that point.

It also means that I decide what activities to do during my allocated activity time. In my current care home, I have been sometimes not even consciously adapting to staff’s preferences for activities way more than I feel comfortable with. For instance, I’ve been taken on grocery shopping trips for the staff’s personal needs under the guise of an activity more than a few times. I eventually put a halt to that, saying I would only go if I too needed something from the supermarket. Another, even more frequent, example is my playing endless card or dice games because I’m assigned a new temp worker who comes across like they’re just here to pass the time. Yesterday, I was assigned one of those and had had it with dice and card games, so I thought, screw it, we’re making a smoothie. It turned out absolutely delicious!

It also means being intentional with my unsupported times. This means rather than mindless scrolling, doing actual reading, watching or listening online. I fully intend on blogging or at least journaling more often. If I can stop caring about my stats, maybe I can post here more often based on self-help journaling prompts. I didn’t collect those books for nothing, after all.

It means being constructive in my relations to my staff. It means being honest about my needs. For example, if a staff member (usually a new temp worker) causes me emotional flashbacks with something they do or say, rather than just telling them I feel in distress, I will hopefully be able to ask for a more trusted staff to intervene for a few minutes (which isn’t the same as demanding I be supported by all trusted staff).

Finally, I will also be constructive in contributing to my crisis signaling plan once it is revised at the new care home. My plan dates back to sometime in 2021 I believe and was immediately thrown out by my former support coordinator here because “it doesn’t work at this home”. What “works” here, however, doesn’t work for me, but that doesn’t mean my plan will be fully useable at my new care home. I will try to understand the staff’s perspective when updating the plan, but will still put myself first.

June 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of the first half of 2023. Wow, can you imagine? I’m joining What’s Been On Your Calendar? (#WBOYC). Here goes.

Honestly, I can’t remember much of the first few weeks of June, other than the fact that I was extremely motivated to get moving. I had signed up for two Apple Watch challenges. Suffice it to say that motivation quickly diminished and I finally broke my 300-odd day streak of reaching my movement goal yesterday. That is, I broke it last Saturday too but cheated by lowering my movement goal for that day.

In other respects, the month has been meh too. I only wrote twelve blog posts, including this one, and hardly have been crafting. I mostly spent my days playing dice and the odd card game. I think I might be depressed, but more likely it’s the shitty circumstances of living in my current care home.

However, I’m pretty sure my staff think I’m doing well, as I’ve been in the communal room more. The reason is mostly to connect to somewhat familiar people, because I’ve mostly been assigned completely new temp workers. When I try to communicate my discomfort with this, I’m usually met with rather curt remarks that the staff have no obligation to explain their decisions to me and then, when I spiral further into meltdown, I’m met with harsher and harsher actions from the staff.

The month of June is, of course, also my birthday month. I had my sister and her family over in Lobith last Saturday, which was okay, though a bit stressful. I spent Tuesday, which was my actual birthday, in Apeldoorn with my parents and spouse. I really loved the Thai food we ate.

In the health department, I have been doing okay. My cardio fitness level has been declining again, unfortunately and is now just barely in the below-average range. I gained a little weight too, but truthfully my weigh-in on May 31 showed the lowest weight I’d been in forever, so I’m not worried about that. After all, I’m still at a healthy BMI.

How was your June?

Hello Monday (April 3, 2023)

Posted on by Astrid

Hello everyone. I’m joining Hello Monday again this evening. Let me share about my weekend.

On Saturday, my assigned staff supported me for part of the morning. We made a melt and pour soap in the shape of a heart. Sadly, I don’t have a picture and I gave it to my husband. I added gold-colored mica powder to the soap and lavender and ylang ylang essential oils.

I also created an essential oil blend for in my diffuser. I used pink grapefruit, bergamot and ylang ylang essential oils in this blend.

I did ask my assigned staff to inquire about my orthopedic shoes. This has been an issue for at least two years: I started out with supportive insoles, then an ankle foot orthosis either with or without semi-orthopedic shoes and finally now orthopedic shoes, but they still don’t fit. The shoemaker is frustrated, wondering when they’ll finally be good enough. Well, when they fit. Honestly, I am skeptical about the method they used to create an image of my feet: not using putty for a “mold” but using an iPad to create digital images, a method they’d used on a client of my care agency for the first time. My guess is this method requires some level of understanding I don’t possess but am assumed to possess based on my expressive language. Anyway, I don’t care how much of a bother I am, but I’m not accepting the reality as it is now, ie. my needing to buy new regular shoes every two months due to them being damaged from the way I walk. If they can’t fit me for orthopedic shoes, they’ve got to find a way to fix my shoe issue some other way.

Saturday was a good day overall. I was supported by two staff – my assigned staff and another – I get along with very well during the morning shift and my day schedule wasn’t disrupted. For the evening shift, three out of four staff were staff I don’t really get along with and I ended up being supported by two of them. I didn’t mind though, as my day schedule wasn’t disrupted and I did get to do some activities I enjoy.

On Sunday, my husband came by for a visit and we drove to Apeldoorn to have lunch at Backwerk once again. I had a tuna baguette. Then we went into several shops, because I wanted to buy some new spring/summer clothes. Sorry, no pictures once again. I bought a blue, flowery skirt and three simple tops in black, white and blue.

Sunday evening was a bit hard. It started out well with the staff explaining to me who would be supporting me throughout the shift. This was repeated several times. Then, at 6PM, unexpectedly a staff who wasn’t supposed to come and whom I don’t get along with, showed up. I had a meltdown and eventually, after a bit of an explanation from the other staff and trying an activity for a few minutes, I chose alone time over time with him.

I also spent my weekend working on the #AtoZChallenge, of course. I don’t generally prepare my posts in advance, so I have lots of work to do on the day itself. I also discovered Reddit last week. That is, I had an account back in like 2008, but they changed things up a lot so that’s no longer valid. I love browsing Reddit now and commenting where I can. I haven’t created a post yet.

Overall, my weekend was mostly good with some negativity due to the unexpected staff change. For those not aware, I am autistic, so it isn’t just that I don’t get along with some staff, but if they’d told me in advance, I could have been prepared.

March 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting back on this month’s happenings. I’m joining What’s Been On Your Calendar? (#WBOYC). Here goes.

This month would have started with my having the meeting on my care on March 2, but it got postponed yet again for the third time. I did get a visit from my mother-in-law instead and we took a walk through a nice park. Here are a couple of pictures my mother-in-law took with her phone of a remembrance stone we saw there.



The next Sunday, my husband and I drove to Ikea in Zwolle, where I bought a stuffed orang-utan. I so far didn’t show it on the blog yet, so what better day to do this than today?

On the other Sundays, my husband and I drove to Apeldoorn to have lunch at Backwerk. We did try visiting another lunch cafe once at the recommendation of one of my staff, but literally all tables were dirty.

On March 17, I finally had the meeting on my care. The positive aspect was that the powers-that-be will be looking for another, hopefully more suitable care home for me. The negative aspect is the fact that, in the meantime, nothing will change. This had me spiral out of control quite a bit, which my staff feel frustrated with.

Last week, it led to a bit of a disagreement between me and my assigned staff, because she got frustrated with my negativity. The way she worded it, even if my day schedule doesn’t get disrupted and I’m supported by regular staff for the entire shift, I still find a reason to complain. I countered that this hadn’t happened in months. Even this morning, with three out of four staff being regular employees, the fourth staff supported me for most of the shift.

In the health department, I did pretty well. I finally saw the dietitian last week and we concluded I no longer need to lose weight. Not that weight loss ever was a priority for me, more like a welcome side effect of my healthier-for-me lifestyle. The fact that I’d lost weight rather rapidly over the past five months, meant I had to up my calorie intake to prevent further weight loss. I did gain a bit of weight in the first week on my new food plan, but then again I did eat fries once in that week and a large burger another day. I’m not stressing about the weight gain at all.

In other health news, my cardio fitness level according to my Apple Watch has declined slightly and is in the “low” range again, though just barely. My heart rate recovery, on the other hand, is steadily improving.

All this being said, I’m trying to embrace my body as it is and appreciate my health for what it is.

In the blogging department, I did quite poorly, having written only eleven posts including this one. I am not sure how I’m going to do with the April A to Z Challenge given this reality, but I trust I can do it.