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?

#WeekendCoffeeShare (June 23, 2023)

Posted on by Astrid

Hi everyone. I’ve once again been feeling really unmotivated to blog. I didn’t even bother with the Wednesday HodgePodge this week. Today though, I want to write. I’m joining the #WeekendCoffeeShare linky. It’s been a while. I already had my last cup of coffee for the day, but we all need to stay hydrated, so if join me for a glass of water, that’ll be fab.

If we were having coffee (or water, but I always start my paragraphs this way), I’d start out by sharing about the weather. Ours has been mostly sunny and warm with daytime temperatures of about 27°C. On Tuesday we had a thunderstorm here and on Thursday it rained continuously all evening. My spouse loves thunderstorms, but Lobith didn’t get any.

If we were having coffee, I’d tell you I have been struggling quite badly lately. The staff here seem to have decided to consistently send the least familiar to me staff member they have on board to do my one-on-one, even when that staff isn’t the least familiar with the other clients. I am of course the one labeled manipulative when I get irritable at the unfamiliar staff. I originally wrote a long rant about this situation, but deleted it because really it doesn’t help anyone.

If we were having coffee, I’d share that, due to these difficult circumstances, I’ve been feeling rather depressed and not as motivated to do much of anything. I keep playing dice games on my phone in an app called Dice World. I also play dice with most staff.

If we were having coffee, I’d share that my sister and her family are coming to Lobith tomorrow for an early birthday celebration for me. I will be in Lobith by about 11AM, though my sister won’t be there till 3PM or so. Unfortunately, on Sunday, my mother-in-law has to be on call for the animal rescue service she does volunteer work for, so we won’t be going there.

On Tuesday, which is my actual birthday, we invited my parents to come to Apeldoorn. We’ll hang out in a park close by where I grew up and then in the evening we’ll have dinner at a Thai restaurant.

I finally decided today that I do want to celebrate my birthday at the institution after all. I’m going to make cheesecake on Monday and we’re going to have French fries and a snack for dinner then.

If we were having coffee, lastly I’d tell you that I finally used my alcohol inks on a polymer clay project. I made earrings, of course. They’re a bit thick and I later found out my particular brand of alcohol inks isn’t very light-resistant, so the color will probably fade rather easily over time. At least now I know I can use my alcohol inks.

Also, I may get my ears pierced someday. I had my ears pierced in 2001, but wore large silver earrings right after the thingies they shoot into your ears when they pierce them. Thing is, I’m allergic to nickel and silver often contains that, so I got bad inflammation and eventually decided to let the holes close up. Now though I really want to be able to wear earrings again. My assigned staff offered to take me, so that’d be really cool.

How have you been?

The Wednesday HodgePodge (June 7, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge again. It’s been a while. Here goes.

1. Tell me something you remember (or if you’re not there yet, something you look forward to) about being 35.
I turned 35 in June of 2021. Honestly, it was one of the best years of my life so far, even though I didn’t see it at the time. It was the first year I had one-on-one and I started exploring polymer clay that summer, shortly after turning 35. I am pretty sure I made some of my best unicorns that year. At the end of 2021, I remember saying here on the blog that I had the best support I could hope for and now it was time to find the best med combo for me, referring to my wish to taper my antipsychotic. Honestly, looking back, I should’ve stayed in my comfort zone and not made the decision to want to move care homes (also when I was still 35, in April of 2022). Hindsight is 20/20.

2. Last time you “burned the candle at both ends”?
I rarely get up very early. My usual time to wake up is 8AM regardless of the time I went to sleep. That being said, if 8AM is considered early enough to count, I regularly “burn the candle at both ends, as I regularly stay up way past midnight. I remember once going to sleep at past 3AM and getting up before 8AM to get in my stand hours on my Apple Watch. I got 21 stand hours that day.

3. Are you someone with the “gift of gab”? Elaborate (which shouldn’t be a problem if you answered yes teehee).
I had to Google that expression. As for my answer, well, it depends. Sometimes I can talk up a storm, but sometimes I cannot articulate my basic needs.

4. Do you request a special meal on your birthday, and if so tell us what that meal is? Do you want the same kind of cake year after year or will any flavor work? Do you want cake at all? Growing up were birthdays a big deal in your house? Are they a big deal now?
I don’t really get to pick a special meal on my birthday now, although back in the psych hospital we could. Instead, I usually go out for dinner with my spouse and my parents on my birthdays. My spouse and I pick a restaurant. This year, we haven’t chosen one yet even though my birthday is on the 27th.

I don’t care for cake, honestly. My mother’s apple pie is good. So is homemade cheesecake. Other than that, I prefer a large waffle or something like that.

Birthdays were definitely a big deal growing up. That being said, I always managed to ruin mine as well as my sister’s with a meltdown or two. Now, though I like my birthday a little because of the presents, it’s more stress than fun.

5. “Age is just a number.”… agree or disagree? Tell us why.
I completely agree with Joyce’s answer to this question. I can feel all kinds of different ages, but it isn’t like I actually am an eight-year-old.

6. Insert your own random thought here.
I went swimming, yay! One of the student staff has a project on leisure activities for a client and she chose me. During our discussion, we talked about swimming. She initially wanted to go to the nearby lake, but I don’t really like that. It was actually my idea to call the institution pool to ask if there was a possibility for me to go swimming there just once. And there was. It was magical! And the best news is, it’s not just for once. Our home now has a spot to go swimming there each week.

Don’t Leave Me Alone! #SoCS

Posted on by Astrid

I am one of those autistic people who doesn’t like to be left alone. That is, I do need a significant amount of alone time, but it has to be on my terms. That might seem weird or normal, I don’t even know. I mean, I’m used to it being seen as weird here at the care home. Staff see it as a sign that I crave attention somehow. Which, even if it were true, well, attention is a normal human need.

I am not sure where I’m headed with this post, but I often feel like a fake autistic for feeling like I don’t want or need to be left alone when I’m in distress. Probably because my former psychologist at the psychiatric hospital used it as a reason to diagnose me with dependent personality disorder. Which I might have after all, I’m not sure. Then again, the treatment for that isn’t to leave someone to their own resources just like that.

I often have this statement in my head: “Don’t leave me alone!” It is cried out, in my head, by a child’s voice. I am pretty sure it is from a book and in Dutch, it sounds different, but I’m writing it like this here for the purposes of this post. Don’t leave me alone. Never leave me alone. Well, people always will. That’s life.

This post was written for Stream of Consciousness Saturday for this week. The prompt is “left alone”.

Trust and Trustworthiness

Posted on by Astrid

Hi all. Today’s topic for Tranquil Thursday is trust. This topic is relevant to my life in so many ways.

Maggie starts her post with a quote which says that, for there to be betrayal, there has to have been trust first. This hits home quite hard. As someone who was at least partly rejected by my parents from infancy on, I am not sure I even remember what it is like to have had that basic sense of trust babies need. It may be for this reason that I never felt particularly affected when family members passed away. Even with my maternal grandmother, with whom I was quite close, I never even felt a sense of grief.

Then again, I did feel this sense of grief when my former assigned staff back at my old care home left her job at the care agency in July of 2022. She was the first person I’d ever fully trusted in my entire life. There were others at that care home whom I trusted almost as much.

I am pretty sure I’ll never trust a professional ever again. Not because of this staff, mind you, but because of the way the staff here at my current care home handle the relationship they have with us residents. Several staff have left their jobs here without ever saying a word and then I didn’t find out until after they’d left. Yesterday a staff I’d repeatedly talked about this to, left as well and I only found out, from his colleague, at the beginning of his last shift.

You may be wondering where my spouse is in all this. Well, I do trust my spouse not to betray me – in the sense of leaving me, mistreating me, or the like -, but it’s only been over the past few months that I’ve been able to truly be myself around my partner.

I am, generally speaking, a very distrustful person. When someone enters my life, their first impression has to be really good for me to have a positive idea about them and, when they mess up, I feel very easily betrayed.

With respect to being trustworthy myself, I’m not sure. I don’t think I am very trustworthy, but it isn’t intentionally. I mean, often I struggle with distinguishing between safe and unsafe people and in this sense end up putting myself at risk as well as potentially betraying my spouse. I remember one time a fellow patient at the psych hospital offering to hold my hand when guiding me and he commented about our spouses not liking this if they saw it. I up till that point was cool with this man as a peer and I initially didn’t see the signs that I was firstly betraying my spouse and secondly also possibly being groomed.

In addition, I can be quite impulsive and dysregulated. I’ve told my spouse that I’m leaving too many times to count. I understand my spouse sees this as significant betrayal too. I know – and my spouse knows this too – that we are meant for each other, but still it probably comes across quite harsh.

April and May 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. In April, I didn’t get to post my monthly reflections because I was too busy with the #AtoZChallenge. Today, for this reason, I’m doing reflections for both April and May. I’m linking up with What’s Been On Your Calendar? (#WBOYC).

Honestly, I don’t remember much of the month of April. It was a really busy month in a way with me participating in the #AtoZChallenge on my blog, which I badly wanted to complete despite struggling with my mental health. In other ways though, it was a boring month, in that I hardly got to do anything creative. I also felt like I had to train new staff almost on a daily basis. By this I mean the fact that, almost every day, the least familiar staff member would be assigned to me and they’d be left with just the instruction to follow my day schedule.

I did work on an activity list detailing steps for each activity I usually do, but this unfortunately didn’t bring me closer to actually exploring creative activities with not-so-familiar staff.

In late April, my mother-in-law sent the behavior specialist an E-mail expressing my distress with the unfamiliar staff situation, as well as with the fact that no-one had told me anything about any progress re finding me a more suitable care home. During the month of May, I’ve had some meetings on this topic, but nothing has been decided yet and I’m pretty skeptical anything will be decided anytime soon. That is, unless the powers-that-be decide no place can be found for me.

Thankfully, I did have the #AtoZChallenge to inspire me. I did, for this reason, write 31 posts.

The month of May was a mixed bag in many respects. It was better than April had been on the care front. This did help me feel better, but it wasn’t like I could actually bring my many ideas for activities into action.

In early May, I went clothes shopping with my support coordinator and assigned staff. That same day, another staff also took me to a nearby lake to go for a walk and take some pictures.


I did over the month of May in particular develop some renewed interests, for example in essential oils. I also still want to buy a new blender, so that I can make smoothies again. However, I haven’t yet decided on one specifically.

I went to my spouse’s and my house in Lobith at least twice during the months of April and May. Honestly, my marriage is stronger than ever and I’m so happy about it!

All this being said, in general I very much feel as though my life has been “on hold” over the past few months. Though I did often feel quite inspired, I didn’t know how to put these ideas into action. I can’t completely blame the care home, but the fact that no matter what the staff here do to improve my situation I’ll never trust them not to mess up again, does contribute.

In the health department, I did significantly improve, at least on those measures I know. I lost weight and currently weigh 57.4kg, which is within the healthy range for my height of 1.53m. I also for the first time today got a cardio fitness level of 25 on my Apple Watch, which is in the “below-average” range (until a few months ago, I was consistently in the “low” range). Next month or in July, I’m due to get my annual bloodwork done and I’m kind of worried about that, particularly my kidney function of course. I do overall feel quite healthy though.

#WeekendCoffeeShare (May 27, 2023)

Posted on by Astrid

Hi everyone. Today, I’m joining in with #WeekendCoffeeShare. It’s been forever since I last joined in with this linky, but I thought I’d share some highlights of the past week with you all. I just had my morning coffee, but am probably going to finish this post after lunch or in my 30 minutes unsupported time before my afternoon coffee. For lunch, I’m just going to drink water, but since this is a virtual get-together, I won’t keep you from grabbing a coffee. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that the weather has been a mixed bag lately. Early in the week, temperatures didn’t rise above 15°C and we had some rain, but today’s daytime high is supposed to be 22°C and the sky is clear. Next week, we’re even supposed to get daytime highs above 25°C.

If we were having coffee, I’d tell you I didn’t really get in as many steps as I’d have liked this week. On Wednesday, I had a bad fall while walking. I hurt my knee and elbow and was dizzy for a bit. Thankfully, I only feel my knee a little now. On Thursday, I only managed a few slow and short walks due to the pain though. I did meet my movement goal on my Apple Watch each day.

For the month of June, I’ve signed up for two challenges on the Challenges app. One is a month-long challenge where points are accummulated based on closing each of your three activity rings, while the other allows participants to choose between basing points on steps or closing of the movement ring (I chose steps).

If we were having coffee, next I’d share that I’ve been pretty paranoid about my support lately. I am finding that I look at everything as a sign that the staff are trying to cut back on my one-on-one support hours. Now they say I get two hours more a day than I formally qualify for anyway, so this makes me feel rather, well, off. I can’t see how I can cut back on my one-on-one support hours as is, but I am pretty sure the staff think I can cope with even less than the hours they claim I qualify for.

I mean, I can cope with about half an hour in the communal room playing a game with a fellow resident most days. Today though, I got overloaded by several different sounds (a staff loading the dishwasher, another resident coming into the room and talking loudly to the staff, etc.). While all of these sounds are to be expected in a communal room (though the staff loading the dishwasher could’ve closed the kitchen door), they did overwhelm me. I managed to keep it together relatively well, but did feel upset that my one-on-one staff of the moment didn’t pick up on the signs that I was becoming overloaded. He claimed I could’ve told him myself and that I was making a big deal out of nothing. This further contributed to my thinking that the staff’s aim is to get me to function in the group without one-on-one. Which, of course, I should really aspire for too, but with how overwhelming even half an hour is in that communal room, I can see this just means being confined to my room alone.

If we were having coffee, lastly, I’d tell you that, on Tuesday, I’m going to meet with a behavior specialist for another care home. Like I mentioned before, I really badly want to move out of this home and my current behavior specialist finally approved this last March. They are currently investigating two possible homes here on institution grounds, but aren’t sure yet whether either will be suitable. Wish me luck with the meeting.

Trying to Live a Balanced Life

Posted on by Astrid

This week’s topic for Tranquil Thursday is balance. Maggie’s first question is about work/life balance. Since I don’t work and never have, I can’t speak to that. However, it made me think of the ways in which I need to create a balanced life in general.

I don’t currently have formal day activities. Of course, I have four hour-long activity slots a day, but I can spend them pretty much however I please and sometimes (most times, actually) I feel so uncomfortable with the staff assigned to me that we can’t do more than play a simple card game. I do feel I need to find a balance in my life between being active and passive.

Active, in this sense, does not necessarily mean exercising, although that too needs to happen. I probably don’t need to worry about being extremely sedentary. I fell pretty badly yesterday and still I managed to meet my movement goal on my Apple Watch today. Okay, my goal is just set to 300 active calories, but that’s so that it’s within easy reach even on bad days like today.

What I do mean by being more active is engaging more in stimulating activities such as crafting, food prep such as smoothie making, etc. I also intend to be more active where it comes to actually learning about these topics. I mean, I love copying recipes and experimenting just a tiny bit, but it’d be great if I knew about the science behind them. For this reason, I just downloaded a book off Bookshare on the fragrance aspects of essential oils. How great would it be if I could create my own blends rather than relying on some shady subscription website.

This doesn’t mean I need to be active mentally or physically all day. It’s about balance, after all. I also need to rest. But currently, I feel my life is a bit too much “on hold” for my liking.

Another way in which I need to find balance, which Maggie didn’t ask about, is health. Last week, I agreed with the dietitian on a weight range I need to stay in to maintain a healthy (or near-healthy) BMI and not go overboard with my weight loss. As long as I stay within this range, I am in control of my eating habits. I do need to make sure I don’t slip back into my bulimic tendencies though. I will see the dietitian again in mid-June and will ask her to continue check-ins with me, although they don’t need to be monthly anymore I think. Over the past few weeks, I gained a little weight, but I’m still within the agreed upon range, though I do notice I’m having “cheat” foods more regularly than I’m probably supposed to.

Another question Maggie asked is about your life pie. This is a drawing of a pie divided into six slices for each area of life. You then put dots in each slice to see how well you do in each area and connect them to see which area is relatively unfulfilled. This is a visual exercise, of course, which I can’t do, but it did make me think. My life is most fulfilled in the area of exercise and least, unless you count work (but that’s by societal standards only), in the areas of friends and play. That last one might surprise my staff, as I play card games on a daily basis. However, what I mean by this is truly being creative.

Hello Monday (May 22, 2023)

Posted on by Astrid

Hi everyone. It’s been nearly a week since I touched the blog. Honestly, the week has been less than stellar, but the weekend was lovely. Let me share. I’m joining Hello Monday.

On Friday evening, I finally decided that, screw it, whether I’d get a staff whom I can trust to help me with my polymer clay or not, I wanted to clay. I put my clay box on the chair we don’t normally use, which did mean having to put several things that had been placed on top of the box on the floor. “Why is everything on the floor?” the staff asked me when entering my room. I replied that I wanted to create a polymer clay unicorn. “You do you,” the staff replied.

At first, she seemed rather uninterested and barely did the things I asked her up front to help me with. Eventually though, she did warm up to the idea of us working on a unicorn and she did give me feedback. The unicorn we created – and which I finished on Saturday morning with another staff – is the first one that has wings. It still needs to go in the oven and I intend to add glitter to the wings too.

On Saturday, I finished the unicorn, went for a walk and played a game of dice with a fellow resident here at the care home. Then, my spouse arrived to pick me up to drive to our house in Lobith. On the way there, we went into the carwash (€15 for a mediocre washing!) and got takeout Chinese food.

We had a relaxing evening at home. At around 10PM, my spouse suggested we go for a drive, as the car needed to be moved out of the street. After all, the town fair would be starting on Sunday and there’d be a procession going through our street. I forgot my passport, so we needed to stay in the Netherlands (Lobith is close by the German border). At one point, my spouse suggested we go to Burger King for ice cream, but it was closed. Next question: “Do we drive to Duiven to go to McDonald’s or go home to sleep?” I chose to go to McDonald’s. We each had a McFlurry. I had the Twix one with caramel sauce, which was lovely.

On Sunday, with the car out of the way, we could have a lie-in. I slept in until about 9:30AM.

Several weeks ago, I’d bought white jeans with my staff. I wore them for the first time on Sunday and at breakfast, they had coffee stains in them already. It looked rather gross (I’ll spare you my spouse’s description). For this reason, we decided to go clothes shopping yet again. We, like usual, went to Apeldoorn. I bought darker beige jeans.

We also stopped by Holland & Barrett, a wellness store, to look at nothing in particular. We left with six bottles of essential oils though. Initially, when looking at them, my spouse said: “Just tell me what you want, I’m not going to name them all, as they have everything.” I asked for clary sage. After looking for about ten minutes, my spouse at first concluded they didn’t have clary sage, then started naming some oils: “Clary sage, nutmeg, …” I said: “Clary sage, that’s the one I’m looking for!” I also got vanilla and jasmine oils. Don’t tell me these are usually either absolutes or oleoresins, not essential oils, I know. I am not sure about the quality of Holland & Barrett’s oils, but I don’t use them for any therapeutic benefits anyway. We also got a blend of roses and a blend of wildflowers just because one of my oils was one plus one free and the other was second at half price. Lastly, my spouse got rosemary.

We also obviously stopped by Backwerk to have lunch. I got a sausage roll.

In the evening, I started looking all over the Internet for blends to try with my new oils. Of course, I had had clary sage before, so only vanilla and jasmine were new, but I love all the possibilities. I created a blend in my diffuser this morning: equal amounts clary sage, vanilla, sandalwood and frankincense. This evening, I joked to my spouse that the blend made me high, because it’s so very calming. I love it though!

Hello Monday (May 8, 2023)

Posted on by Astrid

Hi everyone. My weekend was quite good, if a little hectic. I thought I’d share about it. I am linking up with Hello Monday.

On Saturday, I had a temp worker who was here for the first time as my one-on-one staff for most of the morning shift. Thankfully, I got along with him okay. This did mean I didn’t feel comfortable going on a walk, let alone working with clay or other crafty things. I did play a game of Yahtzee with a fellow resident in the morning. My weighted blanket was also finally put in the washing machine. I was a little worried that putting it in the dryer would damage it, but the staff told me he knew what he was doing. Thankfully, once I got back from Lobith on Sunday, I found out it was still intact.

In the afternoon, I got a new temp worker once again, but thankfully my spouse was here almost as soon as the evening shift started, so I didn’t have to deal with the temp worker long. We drove to my spouse’s and my house in Lobith, picking up groceries and Domino’s pizza along the way. I had the hot and spicy pizza with pepperoni, bell peppers, onions and jalapeños.

Because I hadn’t been walking all day on Saturday, I decided to do some dancing in the evening. Otherwise, I wouldn’t have reached my movement goal on my Apple Watch and I didn’t want to cheat by lowering it yet again (and I certainly didn’t want to break my 250-odd day streak).

On Sunday, we visited my in-laws for a bit. My mother-in-law and I went for a 40-minute walk through the village. In the evening, when I once again had a temp worker, but thankfully a somewhat familiar one, I went for two more 40-minute walks. Then, because I could, I danced some more. I finally doubled my movement goal on my Apple Watch for the first time in half a year.

Yesterday evening, I had a bit of an issue with my sister. I invited her to my birthday at the end of June, thinking that if I invited her now she would have plenty of time to make sure she actually could make it on one of the days my spouse and I are available. She got upset, because her and my youngest niece’s birthdays are first (this Saturday and on the 19th, respectively). She tried to ask me whether we would come over for her birthday too, which on the surface seems reasonable. However, being that she has both this weekend and the weekend after that planned pretty full with other family and, besides, we don’t do last-minute planning for trips that are this long (my sister and her family live over two hours away), I decided against it. According to my sister, the way it “works” in our family is everyone knows when our birthdays are and is welcome to come by, so it wasn’t like she should have invited me. Being the people pleaser that I am, I actually almost let her persuade me to allow her to ask her in-laws, whom I barely know, to pick me up when they would be visiting them on the 18th. Thankfully, my spouse intervened and told me that would be really unwise, since what if I have a meltdown either on the trip or when with my sister’s family? Finally, thankfully, it turned out she wasn’t really expecting us, but was just upset that I’d mentioned my birthday this close to hers. I can see her point.

Yesterday, as a side note, was my partner’s and my fifteenth anniversary of being a couple. I really feel pleased that we decided to “call it a relationship”back on May 7, 2008. We’ve overcome quite a few hurdles in those fifteen years, but I’m so happy that we’re stronger than ever together!