#WeekendCoffeeShare (February 22, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare once again. It’s almost 10:30PM here, so no coffee for me. Since this is a virtual get-together, you’re free to grab your own beverage of choice. Let’s have a drink and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been all over the place with freezing night-time temps and daytime highs hardly above freezing early in the week, then a daytime high of 16°C yesterday. Today the daytime high was 12°C, which is still quite warm for late February. Unfortunately, it was raining most of the day today.

If we were having coffee, then I’d share that this week was a mixed bag mental health-wise. I’ve mostly been quite tired, but the bloodwork I had done on Monday came back all clear. I wish there was something simple that could explain my daytime tiredness, but I’m pretty sure that if I pressure the doctor to do more testing, they’ll just say I shouldn’t give in to fatigue, as I was told the last few times (many years ago) that I complained of being too tired.

Yesterday was a good day, but today I felt a bit irritable and overloaded.

If we were having coffee, then I’d share that I spent a lot of time early in the week switching web browsers. Somehow, with the latest update, Edge for iOS is pretty much impossible to use for me. Whether this is an actual bug in its accessibility with VoiceOver or it’s just that things have been switched around like crazy and I’m not tech savvy enough for it anymore, I don’t know. I tried getting the freakin’ Copilot (Microsoft’s AI) that was constantly in my way to disappear, but it wouldn’t.

So I decided to leave Edge behind altogether and switch browsers, because I don’t like using one browser on my iPhone and another on PC. I finally settled on Chrome and, though I’m still figuring things out, mostly it works okay.

If we were having coffee, I’d then tell you that a (now former) staff came to say goodbye on Monday. I gave her the “bull in a china shop”, ie. the polymer clay elephant in a mug I’d created last week. She loves unicorns and elephants, but she already had a unicorn.

This time around, I didn’t get a proper description from the Be My Eyes app, because it judged the mug to be its body and the letter J (for the staff’s first name) to be its tail.

If we were having coffee, I’d then tell you all I had a good day yesterday. I walked a lot, but also visited the next town’s market. I had originally been uncertain as to whether I wanted fried fish (or shrimp really) because of it being quite a high-calorie, high-fat food. I eventually said “screw it!” and considered yesterday a total cheat day. I, after all, also had fried chicken for dinner. Granted, other than that I only had a salad.

If we were having coffee, then I’d share I do really need to lose weight though. I’m about 2kg overweight, which doesn’t seem like a lot given that I used to be 20kg heavier than I am now. However, the “screw it!” thoughts are pretty commonplace especially given the current state of the world. For example, my unhealthy voice is telling me it’s not a problem if I risk getting a heart attack ten years from now because, for all we know, the world may’ve gone up in smoke by then anyway. I, thankfully, do still have more tangible reasons to lose weight or at least not gain any. Like, I still want to be able to wear my favorite pants.

If we were having coffee, lastly I’d share that I am still going strong meeting my movement goal on my Apple Watch each day this month. I’m really hoping for the perfect month award. That being said, I’m not overcompensating for my having indulged in too many “cheat” foods. Not that I believe in cheat foods anyway, since there are no bad foods, just less healthy habits. And overexercising can be a less healthy habit too, as my dietitian reminded me on Wednesday. Not that I’ve ever truly done that, honestly. The bottom line though is that I’m not engaging in compulsive eating habits or exercise. I feel things might need to be a little more controlled, but I’m not sure how to do this.

Today’s Accomplishments (February 15, 2025)

Posted on by Astrid

Hi everyone. Over the past few weeks, all I seem to have done is hang out on social media, talk randomly with my staff and lie in bed. That isn’t entirely true, since I’m still managing to close all of my activity rings on my Apple Watch everyday this month. However, this month so far feels horribly unproductive. I think in part this may be my mindset, so to turn the tide, today I’m once again listing my accomplishments for the day.

1. Showered even though it wasn’t one of my designated shower days. Like I said in my post on spoon theory, showering costs me a lot of energy, so it’s actually quite an accomplishment that I did it on a day I wasn’t required to.

2. Went for an hour-long walk. This isn’t a huge achievement, as I walk most days, but still, I shouldn’t downplay it either.

3. Completed the friends quest with my partner on Duolingo with me having done only slightly less than my spouse. The quest was to complete 50 lessons with 90% accuracy. The accuracy isn’t the problem for me, as I’m doing intermediate English and early B2 is still quite easy. However, over the past few weeks I’d only done a lesson or two a day.

4. Created a “bull in a china shop”, as I call them, out of polymer clay. It’s an elephant that sits on top of a cup. I had been planning to make it for a few days, but always procrastinated on it even though it turned out I could finish the thing in half an hour. No picture yet, as it still needs to have its eyes painted.

5. Wrote a few thoughtful (if I can say so myself) comments on Reddit. I go there everyday now that Facebook is no longer safe, but I try to actually have something meaningful to say too.

6. Wrote this blog post. Does that count? Yes, if I say so, it does and it’s probably the greatest achievement of the day given I had hardly come on WP over the past few weeks.

Limerick: Rage

Posted on by Astrid

When I scream out of rage
Some staff won’t engage
Others let me cry
Until my bad mood passes by
Then I can turn the page

This was seriously my first attempt at a limerick in I think it must be more than 25 years. I don’t honestly think it’s funny, but at least I gave the challenge a go. This one’s for Esther Chilton’s prompt, which is “rage”.

Spoon Theory

Posted on by Astrid

Hi everyone! I’m back after more than a week of not touching the blog. I feel horrible for having neglected something I really love over the past few years, ie. my blog. However, I just don’t seem to have the spoons for it.

Spoons? This week’s prompt for #SoCS is “spoonful”. I immediately thought of spoon theory.

Spoon theory is a way of describing life with a chronic illness or disability that limits someone’s energy levels when compared to non-disabled people’s energy levels. I haven’t delved deep into it, but the way I understand it, each person has a set number of “spoons” or spoonfuls of energy. However, for a disabled or chronically ill person, daily activities take up more spoons than they would for someone who is currently healthy and non-disabled.

I was thinking of this when, after a dispute with one of my staff over temp workers, I wanted a way to explain how hard it is for me to deal with a temp worker, especially when they haven’t been told what to do with/for me, because “she can explain everything really well”.

For example, let’s say we each have ten spoonfuls of energy a day. The actual number doesn’t matter, but the point is it’s the same for someone who isn’t disabled, like the staff, as it is for me. For a non-disabled staff, their first spoonful of energy of the day might go to showering. For me, it goes to processing the staff’s greeting in the morning and figuring out who is going to help me with my morning routine. Then, if it’s a temp worker, the next spoon goes to introducing myself and figuring out whether I “know” them already (as some of them claim I should “know” them when they’ve been my staff just once many months ago). Then, another spoon goes to thinking of whether it’s a day I’m supposed to take a shower (which I hate, so doing it everyday to skip this step isn’t really an option) or just do a quick wash. Showering costs me at least two additional spoons, often more. Then it’s not even half an hour into my morning routine and I’ve already spent half my spoons for the day. I accept this reality, but additional spoons go into explaining my routine to temp workers even though a lot of it is in my day schedule. When a temp worker (or even a regular staff who rarely works mornings) helps me with my morning routine, this usually means I’m overloaded by the time I’ve finished breakfast.

And just so you know, getting up on my own and doing my entire morning routine independently, would mean I’d spent all of my spoons by the time I had gotten dressed or even earlier. I tried this when at the intensive support home, where the reasoning was that if you can do something physically, it doesn’t matter how much energy it costs. I was then told I was being “negative” for going into bed right after my shower.

For your information, spoon shortage does not just result in physical exhaustion. For me, it often results in mental overload, which I may show as a meltdown. Then people reason that melting down costs energy too so why am I “choosing” to spend my spoons on that? The thing is, meltdowns aren’t a choice.

I honestly feel that staff in general, not just the staff who refuses to support me after said dispute, need to be more aware of spoon theory. Then they’d understand better why I can walk for 45 minutes but not do my personal care completely independently. Hint: walking is just one action for me (putting one foot in front of the other). Oh, that’s two because I have two feet. However, my point is that walking isn’t nearly as complex a task as personal care is.

That being said, I feel that spoon theory would not just help me, but the other clients too. There’s a client here who “takes advantage” of the others by not doing any chores, according to the same staff who tells me I can explain everything perfectly fine so the temp worker doesn’t need introducing. She’s all for fairness and equality and everyone being the same. Newsflash: we aren’t. And who knows how much energy goes into this client’s everyday activities?

Okay, this post goes into the “Awareness” category because it’s not really a ramble. Well, it is, but it is also a post to raise awareness. I haven’t added the “#SoCS” ending to my post title because, well, not sure why but it didn’t feel appropriate. I hope that’s okay.

Abandonment Wounds: What Will Happen If I Can No Longer Mask?

Posted on by Astrid

I’ve been struggling with attachment issues a lot lately. Not related to a specific person this time. I mean, yes, like I said on Wednesday, four of my “favorites” among the staff are either on leave or will be leaving (be it temporarily or permanetly) soon. That’s not the problem, since I’ve learned the hard way to expand my list of “favorites” when necessary. It’s in my best interest too to avoid a situation like the one with my assigned staff in Raalte, who was leaving and left me with just two other trusted staff.

The issue I’ve been dealing with lately, is much more existential: the knowledge that, if I’m truly myself, I’m unacceptable. Not because I’m some kind of criminal. I’m not. Rather, I’m an outcast. And while I won’t be in the prison system for that, being shoved around care home after care home while not having family to advocate for me, will be equally horrid.

I have been struggling with memories of the circumstances surrounding that assigned staff leaving. A few months before she left, I sent her a rather dramatic E-mail about how no-one will be in my life forever. Well, my spouse says we’ll always be in each other’s life, but truthfully we can’t know that. Besides, when we lived together, there were just a little too many situations in which my spouse (understandably) was disappointed in me that are however things I couldn’t help. For clarity’s sake: I don’t blame my spouse, but maybe with my being multiply-disabled, I’m not suited for “traditional” long-term relationships. Ha, now I’m reminded that my spouse often reminds me that I said when we were choosing to be a couple, that I didn’t want a traditional relationship.

Of course, the reason I’m undesirable by society’s standards isn’t my fault. Like, I can’t help being disabled. But just because it isn’t something I choose, doesn’t make it any less real or hurtful. In fact, it hurts more because I can’t choose not to be me.

I mean, I’ve masked more or less successfully for many years. Mostly less successfully, but my parents prevented me from landing in the care system at a much earlier age than I did by claiming the police and other people who thought I was disturbed, were just stupid. They were masters at manipulating the system. I am not.

Back to my assigned staff in Raalte. She was the first to take my wish to leave seriously. I assume she genuinely felt that the intensive support home could better serve me than the care facility, but I also assume she had a team and a manager to deal with and it remains a fact that some of her coworkers couldn’t cope with my behavior. Which was, for the record, much less challenging than it is now.

It genuinely scares me to think of what will happen if (when?) I can no longer mask at all. There was this news feature sometime in 1997 or 1998 about a girl, aged about sixteen, who was too intelligent for intellectual disability services but who still couldn’t cope in adolescent mental health services and was, as a result, restrained long-term. After her family sought media attention, she was transferred to a treatment center for youth with mild intellectual disability and severe challenging behavior. I don’t know what became of her.

Last week, when I had several severe outbursts related to my most recent frustration, I begged my support coordinator to ask the behavior specialist to involve the Center for Consultation and Expertise (CCE) again. I really want to get the ball rolling on getting them involved before it’s too late and I’m being kicked out again, like the last time they were involved in 2018. In this sense, a consultation might help more this time, because at this point, as far as I know, staff aren’t yet so much at their wit’s end that they see the situation as unresolvable. But I’m scared of what will happen if they do get to this point, like apparently some staff in Raalte were.

A Recent Frustration Related to My Care

Posted on by Astrid

Hi everyone. I haven’t blogged in over a week because I’ve been struggling once again. Honestly, I can see why judging from my experience over the past 2 1/2 years, people would say I’m always struggling anyway. The thing is, there are and there definitely were times I am or was struggling less. Besides, to say that this is just the way I am, is blaming me for the system not meeting my needs. And we all know that the system is broken and this is a reality, but I’m honestly getting frustrated with how little recognition I get for my attempts at coping with this reality and how much blame I get when I fail at doing so.

Now on to why I’m struggling again. I mentioned about a month ago that I would no longer be assigned unfamiliar temp workers. This is a definite positive. However, with this home having twenty residents, many of whom with high support needs, the pool of so-called familiar staff consists of at least thirty people. That isn’t the problem: I am fine with all thirty coming into my room to do activities with me, just like I’ve always been fine with the occasional unfamiliar temp worker. The problem is that all thirty so-called familiar staff are supposed to be assigned to me equally often and I’m not allowed to have a preference. The reason is the idea that I’ll add more people to my trusted circle if they’re required to be assigned to me more often.

I can see their point, in particular because four out of eight staff who I consider part of my trusted circle now, are either on sick leave or leaving soon, be it temporarily (on maternity leave) or permanently. I can see why one would like to avoid a situation like with my assigned staff in Raalte, who left about two months before I did and who at the time was one out of only three staff I fully trusted. Then again, I’m never going to have a circle of thirty, just like most people don’t have thirty close friends. And that’s what this whole “get to know everybody” thing feels like. I do try to expand my circle as needed, but I just can’t treat all staff the exact same unless they treat me the exact same and, in that case, we’d all be losing sight of each other’s individuality.

Besides, the staff don’t follow their own rules when it suits them. For example, it’s a rule that I’ll see one staff for my morning activity and lunchtime, but they’ve been switching that around when they felt like it, yet telling me (and each other) of the rule that they must switch at other times. In other words, the staff require me to deal with a minimum of six switches of staff per day, but when it suits them, this can be increased and yet it can’t be decreased. That’s while I made it clear in the document detailing my care needs last summer that I don’t do well with staff switches. Yet they blame me for the agreements we made back then not working, even though they didn’t follow through on most of them. Most notably, they’d told me they’d try to have a trusted staff assigned to me most days for at least part of the day and that just wasn’t happening. In fact, eight out of ten times at least, the staff assigned to do nearly four hours of support with me, was a random, unfamiliar temp worker. I don’t blame myself for this not working out.

I’m sharing this post with the Writer’s Workshop for this week. It was a recent frustration, in that this rule (about required switching) hadn’t been adhered to as strictly as it’s now until last week. I’ve also had a lot of discussions about it with my support coordinator this past week. I’m having a care plan review next week and am planning to raise this issue both specifically and as an example of a general trend towards blaming me for a broken system and mistrust towards me. After all, staff are claiming I would only want my “favorites” assigned to me if they didn’t require staff switches as often as they do now. Let me just say this wasn’t even the case in Raalte, where I did have a core team of at least somewhat trusted staff.

Growing Up Emotionally

Posted on by Astrid

Today’s Ragtag Daily Prompt is “when I grow up”. I’m going to be forty next year, so by most standards, I’m considered to have “grown up”. Only by the model that includes life experiences such as working, buying a house, etc., I’m not necessarily truly an adult. After all, though my spouse and I own a house together, buying it was mostly done out of necessity so that I could go into long-term care. I’ve never worked, not even had a side job as a teen.

That being said, in many respects I’m still young at heart. I know everyone my age says so to be cool, but I don’t mean it in a positive way. Rather, I mean it to say that emotionally I’m very vulnerable. Like I shared when discussing emotional development as it relates to intellectual disability (and autism) in 2023, on many subscales of the emotional development assessment used here in the Netherlands, I’m considered an infant or toddler. That doesn’t mean I can’t grow.

When I grow emotionally, I’d like to become more regulated. My psychiatrist used to say that I’d likely experience less emotional dysregulation after age thirty. I’m not sure that’s true in my case. In fact, I’m pretty sure it’s not true. The frequency and severity of my meltdowns has increased, though the duration has lessened significantly. I no longer experience outbursts that last all day. That, I mostly attribute to my staff’s proactive attitude.

I’d also like to be more independent. The problem with this, however, is the fact that my energy level varies significantly from day to day. Because of this, I hardly ever progress in my independence even though I might be able to. The reason is the fact that, if I do something independently once, my staff and others are going to expect me to always be able to do it.

Same for adaptability and emotional regulation: my abilities vary from day to day and sometimes hour to hour. I, for this reason, struggle to really make progress. That doesn’t mean I don’t want to.

Echolalia

Posted on by Astrid

Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.

Kymber’s Get to Know You (January 9, 2025)

Posted on by Astrid

Hi everyone. I have been quite tired over the past few days, so didn’t do much writing. I’m still proud to say that this is my sixth blog post in January. Considering that some months in 2024, I only published five posts total, this is good.

Anyway, regular readers may remember me participating in the Wednesday Hodgepodge for a while. I stopped doing that, because I didn’t like it that the overwhelming majority of participants’ posts were heavily Christian-based. Now though, I seem to have found something to replace it with: Kymber’s Get to Know You. Here are the questions for this week and my answers.

1. What is the most memorable activity you did with your family as a child?
Not an activity we did as a whole family, but play-based learning with my parents comes to mind. For example, my father taught me to calculate squares using computer chips he’d been removing out of the devices himself. I also remember us looking at maps together. My mother also made little books in large print for me to learn to read when I was about four. Here in the Netherlands, children don’t usually learn to read until they’re six, but I was a precocious learner. My parents will probably be proud to see me list these “intellectual” activities.

2. What quality do you appreciate most in a friend?
Acceptance. I want to be myself with a friend and if they aren’t willing to accept that, fine but they aren’t my friend. I will also accept my friends for who they are. I don’t mean that mutual annoyances can’t happen. They happen between me and my spouse, who I consider to be my best friend, all the time. However, when it comes down to it, we accept each other for who we are.

3. What is one characteristic you received from your parents you want to keep and one you wish you could change?
My mother jokes that I inherited all my positive qualities from my father and all my negative ones from her. I was almost going along with it, because indeed the first positive characteristic I thought of comes from my Dad and the first negative one from my Mom. However, I’d like to boost my Mom’s self-esteem a bit (should she ever read this) and lessen my Dad’s. Therefore, I’d like to keep my Mom’s creativity and get rid of my Dad’s snobbishness.

Reading, Watching and Listening Lately (January 6, 2025)

Posted on by Astrid

Hi everyone. Today I’m sharing what I’ve been reading, watching and listening to lately. I’m joining It’s Monday! What Are You Reading? (#IMWAYR). Most of this post will be dedicated to books, but I’m also sharing a little of my recent travels through YouTube and podcasts.

Reading

I saw the book Camp Damascus by Chuck Tingle recommended online when someone asked for queer autistic characters in young adult/new adult lit. It’s horror, which I rarely read, but for some reason its description appealed to me. I am surprised to say that I’m already 25% in even though for me it’s a pretty long book. One thing that already disappoints me a bit is that, 25% in, I still seem not to have a clue of what happens.

Other than that, I’m mostly just paging through my over a dozen collections of smoothie recipes. I will be buying new ingredients tomorrow.

I don’t do these posts every week, so for my recently finished reads, I’m sharing a book I finished just before Christmas: Murder on Christmas Eve (A Dodo Dorchester Mystery, #6) by Ann Sutton. It is a cozy mystery set in early twentieth century England. I didn’t initially realize it was historic and I hadn’t read the other books in the series, so it was a bit hard to get into, but it was an intriguing story.

I still have half a dozen books I haven’t finished but intend to finish… someday. That being said, I honestly have no idea what I’ll be reading next.

Watching

Yesterday, I watched a YouTube video from an American guy who lives in the Netherlands, sharing ten things (American) tourists should not do when visiting Holland. Oops, that’s one of them: calling our country “Holland”.

I also have been watching some snippets of 3FM Serious Request’s feature on metabolic diseases. 3FM is a Dutch public radio station and Serious Request is an annual fundraiser event, this year for MetaKids, a Dutch foundation that funds research into metabolic diseases. Since one of my fellow residents has Sanfilippo Syndrome, which is a metabolic disease, I was intrigued to learn more. I didn’t donate though.

Listening

On New Year’s, I watched a fascinating episode of the Real Survival Stories podcast on a paraglider who landed in a storm and was pulled up to 10,000m into the sky. It was truly chilling!

Now I realize most of the things I enjoyed lately are on the dark side. I don’t care though. I do usually hope for good endings. If you’ve read Camp Damascus, please don’t spoil it for me.