The Good and the Bad: How I’d Rate My Days

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is rather relevant for me. In it, Sadje asks us how we’d rate our day. I’m not going to pick a specific day, but use this as an opportunity to write about the quality of my days and as such my quality of life.

When the Center for Consultation and Expertise consultant met with me last September, at one point she asked me how I’d rate my quality of life on a scale from 1 to 10. I find this difficult to say, as some days just about completely suck while others are okay or even somewhat joy-filled. I said that, on my absolutely awesomest days, I’d still rate them 7 out of 10 due to the fact that I experience pain and other forms of discomfort daily. Honestly though, I’m being optimistic when I do this. Even on my greatest days, after all, I hardly experience any noteworthy things. Like, I consider cooking or crafting to be enjoyable, but is my day really more than just about okay when I have done one of these?

This also signifies that my life could still very much be improved with just a few in my opinion relatively minor changes to my care. However, my staff see it differently, because they believe I can’t do a cooking or crafting activity when I’m in distress and, I believe, they also think I should be happy with just a walk and a dice game each day. Which, honestly, I’m not.

This makes me feel bad. In the words of my assigned staff at the intensive support home, when the staff follow my day schedule perfectly and I get all familiar staff, my day should be perfect. I replied, in my opinion truthfully, that no-one ever has a perfect day.

Now, to answer Sadje’s question about how I’d rate today: I’d probably rate it a 4 out of 10. I was rather distressed due to another incident yesterday. I also didn’t get to do anything other than go for two walks and play a game of Yatzy. I did, however, manage to do some reading and, as you can see, am writing this blog post. This signifies that, despite my distress, I’m still relatively able to function. My days could still be a lot worse. Besides, I had a cup of green tea in the evening. Oh wait, there I was being cynical, because green tea has become my symbol for how I actually feel about my life: when a cup of green tea is the highlight of my day or even week, that’s rather odd.

No Reason for Alarm, Apparently #SoCS

Posted on by Astrid

Hi everyone. I’m pretty frustrated right now. This is in part related to the usual struggles with my day schedule, ie. the fact that the only thing that’s clear about it is when I have support and when I’m supposed to be by myself. I’ve explained a zillion times that I need my activities to be more structured but the staff keep saying I can’t do any meaningful activities when I’m in distress. This may be partly true, in that polymer clay, baking and cooking are harder for me to do when I’m in distress, but when there’s no clarity about which activities I’ll do, the sheer magnitude of the list I have to choose from, overwhelms me before I can even decide whether I’m in good enough a mental state to do such an activity.

Another thing that’s been bothering me, are my physical symptoms. I’ve had horrible tremors for a few years already, but over the past year or so they’ve steadily gotten worse. My institution’s physician tells me to distract myself when it happens because it’s probably in part stress-related. However, I can barely operate my phone or computer when my hands are trembling and all the activities that I can do on my own that would at least in theory distract me, involve my iPhone or computer.

Yessterday, the tremors were so distressing and also my leg was in a constant state of tension. The tremors mainly affect my right side, while the muscle tension was on my left side. I have mild cerebral palsy affecting mainly my left side, so it’s kind of understandable that I’d experience spasming in that leg. However, there’s no known explanation for the tremors. Yes, they could be psychosomatic, but they could also be due to medication (one of my various psychiatric medications), some kind of long-term effect of my cerebral palsy, or any combination of these.

Knowing that my doctor doesn’t see a reason for alarm, is somewhat comforting. At least there’s no reason for me to believe I have a neurodegenerative disease. That doesn’t mean the thought doesn’t creep up on me at times though. However, even when I am able to realize that I’m not suffering from Parkinson’s (not that my tremors are at all similar to those someone with that disease would suffer from), the tremors are still debilitating.

On Monday, the staff are going to ask my GP’s nurse practitioner about the symptoms yet again. My intellectual disability physician tells me to distract myself, apparently believing my symptoms are psychosomatic. I’m pretty sure the nurse practitioner is going to say the same. However, if only those telling me my symptoms are all in my head and due to stress, could help me lessen that stress!

This post was written for #SoCS, for which the prompt today is “alarm”.

Do I Have a Mental Illness?

Posted on by Astrid

Hi everyone. Several happenings today, including my reading today’s Friday Faithfuls post, made me think about the question whether I have a mental illness. Or should I say mental health condition? Is there even a difference?

People who know me, may be surprised at the fact that I even ask this question. I mean, of course! I spent nearly a decade in a psychiatric hospital. Then again, when I was first admitted, the psychiatrist deciding to admit me made it very clear that she wasn’t diagnosing me with a serious mental illness. I had a diagnosis of autism, of course, which though it is in the DSM and though here in the Netherlands it falls within the realm of psychiatry, isn’t technically speaking a mental illness. To be added to this diagnosis was adjustment disorder, which in short means an inability to cope with the stressors of daily life. Nowadays, people with this diagnosis alone don’t qualify for mental health services, let alone admission to a psychiatric hospital.

But once I was in the system, numerous mental health diagnoses which may fall under the realm of mental illness, were added. My first was impulse control disorder not otherwise specified, which I’m pretty sure was just a way of explaining away my meltdowns without admitting they were due to less than adequate care. I often wondered why they singled out impulse control as the only issue on which they gave me the vague “not otherwise specified” diagnosis. I guess it’s because, unlike my anxiety, depression, disordered eating, etc., my meltdowns did bother other people.

Then, several years later, came (complex) PTSD and dissociative identity disorder. These are mental illnesses, but they are caused by overwhelming circumstances, just like adjustment disorder.

Later came borderline and eventually dependent personality disorder. Finally, I was diagnosed with recurring depression in 2017.

All this to say, whether I have a mental illness or not, isn’t as straightforward as it may seem. I do know that my current care plan lists “mental health problems” as a general “diagnosis”. I honestly try not to care about the specifics of my diagnosis, but I’ve learned the hard way that the specifics can be used against me. For example, when I had the personality disorder diagnoses, I was kicked out of the psych hospital with almost no aftercare because of allegedly misusing care. I wish the higher-ups would look beyond the labels and at the individual.

#WeekendCoffeeShare (June 14, 2025)

Posted on by Astrid

Hi everyone on this hot Saturday evening. I’m joining #WeekendCoffeeShare. No more coffee for me, as it’s 7:30PM. I was just discussing possibly creating a mocktail someday, but not today, as I don’t have the right equipment. It’s the right weather though. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather, as usual. Early in the week, the daytime temperature didn’t even reach 20°C, but yesterday and today were hot with a high of 30°C. It’s also pretty humid. We got some rain today and there are thunderstorms in the forecast. Tomorrow, the temperature’s supposed to be less hot: about 23°C.

If we were having coffee, next I’d tell you that I did still meet my movement goal on my Apple Watch each day this week. I went for bike rides on Monday, Thursday, Friday and today. On Thursday, we rode the side-by-side bike to a shopping center about 10km away. I wanted to buy fruit and look for a hat or cap to protect myself when in the sun. I have a giant straw hat, but don’t like how large it is. Then again, it’s supposed to protect my eyes too. I didn’t find a hat or cap I liked, but I did buy peaches. Yum!

If we were having coffee, next I’d tell you about my creative endeavors over the past week. On Tuesday, I made a new necklace and today, I made four pineapple charms out of polymer clay. These are to be used as decorations for the living room. They’re currently still curing in the oven.

If we were having coffee, I’d also moan once again about the institution’s policies regarding where packages are supposed to be delivered. And about PostNL. I ordered a number of jewelry-making supplies on Tuesday, which were sent out by the store on Wednesday. On Thursday, PostNL would’ve delivered them, but they were too busy (as they usually are). They tried to deliver my package today, but the place that usually picks up packages here on grounds is closed on weekends, so PostNL sent my package on to a pick-up point. And to make matters worse, the pick-up point isn’t even within biking distance. I hope that the package will arrive at the pick-up point Monday morning, and I hope that my Monday afternoon staff will be able and willing to drive me there too. It’s all very frustrating! PostNL used to have a pick-up point in the next town, but that apparently closed.

If we were having coffee, finally I’d talk about the stressors re my upcoming birthday. I initially wrote a post on this topic yesterday, but decided to delete it.

My birthday is on the 27th and I initially waited on my parents to take the initiative to schedule a visit and they apparently waited on me. Then on Tuesday, my bestie and I were discussing this and I realized that I would probably regret it if I didn’t meet my parents for my birthday this year. I mean, they’re in their 70s, so I won’t have many years with them left.

Then came the stress of figuring out what we’re going to do. My bestie proposed we drive to Groningen, which is the big city nearest to where my parents live. I asked my parents about this and my father immediately came up with an idea of showing us around some library museum thingy. We usually eat out for my birthday too, so I asked my parents to find a restaurant. They got the impression that I wanted a Thai restaurant like last year and the year before, so came up with one. Thing is, they’d never been there and the reviews were horrible. There was even a customer who said there’d been plastic in their food and, on top of that, the restaurant admitted it but wouldn’t give a discount.

Then I came up with another idea: to go to a chicken restaurant about 45 minutes from my parents. However, this restaurant is in a tiny town with nothing to do. I also asked my sister to recommend restaurants in Groningen. She initially reacted disappointed that I hadn’t invited my parents over here the day my sister and her family are coming, so I was like “Screw it!” and came up with the chicken restaurant. My sister eventually recommended some places, but these sounded more like diners than restaurants. Finally, my bestie decided to look up good restaurants and found something which sounds good to all of us.

I still feel quite a bit of stress about my birthday, as I don’t have a good relationship with either my parents or my sister. I will however get through it.

Neurospicy Burnout

Posted on by Astrid

Hi everyone. A few days ago, I listened to a podcast episode on autistic burnout. It’s the most recent episode of Beyond Chronic Burnout, a podcast for autistic women (and other marginalized genders, I hope) and their helping professionals. It discussed the Spicy Pepper burnout questionnaire, which apparently is a questionnaire to determine your level of burnout. I got overloaded trying to find the actual questionnaire amid all the ads etc. and it looks like the website it was published on, isn’t particularly screen reader friendly, so I wasn’t able to take the test. However, from the descriptions discussed on the podcast, I believe I’m in quite a significant burnout and have been for, well, years.

What is autistic burnout, you might ask? Autistic burnout is like regular burnout from being overworked, but it is really more like being overworked living life in a world not designed for autistics. As I have said for many, many years, just living in a neurotypical world is hard work for me.

I want to clarify that autistic burnout is often amplified by co-occuring conditions such as ADHD. In fact, writing this just reminds me of something I read several years ago that said that having fibromyalgia, which is often agravated by stress, is often correlated to ADHD. This is why I refer to neurospicy burnout.

The podcaster claimed that the first signs of burnout in autistics usually appear between the ages of four and six and many autistics experience their first actual burnout between the ages of six and ten. This was hugely validating. I, at age five, fell ill with what my parents claim was the flu, but it did lead them to get me into special ed quicker than originally intended. Age seven is always when my parents claim I changed from a cheerful, happy child to angry and depressed. This correlates with my having to start learning Braille, so according to my parents I then became aware of my declining vision. This is probably correct, but it doesn’t mean that my difficulty accepting my blindness was the only or main problem.

The first warning sign of autistic burnout, the podcaster says, is suicidal ideation. Oh my, can I relate! I honestly always thought that the first sign of burnout, whether neurospicy or work-related, was exhaustion. That with the fact that I react to overload with overactivity and irritability, always made me believe I’ve never had “real” burnout symptoms. Now I realize that I may not have fully collapsed (yet), but I do certainly experience burnout. And have for, well, my entire life since I was seven, I guess.

Gratitude List (December 1, 2024) #TToT

Posted on by Astrid

Hi everyone. It’s nearly 11PM as I write this. I feel motivated to write, but can’t really think of a lot to write about. However, a gratitude list is always good. I’m joining in with #TToT. It’s been forever! Let’s see what I’ve been grateful for this past week.

1. Inspiration to craft. I mentioned this yesterday too and have been claying again today. I also have many ideas floating around in my head.

2. A visit to a nearby market again. I got fried calamares at the fish stand. I also bought spicy olives.

3. The pasta salad with tuna we had yesterday. And the fact that it wasn’t used as an extra but as the main meal.

4. Sleep. I’ve been sleeping a lot over the past few days. Not always at night, but who cares?

5. Warm clothes. I’m nursing a cold, like I said yesterday, and, though I don’t have a fever, I do feel more comfy wearing warm clothes.

6. The fact that I managed to talk out a recent issue with a staff today. She tried to assign me a temp worker on Friday even though there were other options. It turned out she hadn’t fully understood the agreement.

7. The fact that I now feel at least a tiny bit comfortable with the new staff. With the latest addition to the team, I struggled a bit, but we had a good time on Thursday.

8. My mental state. I’m still experiencing anxiety on a daily basis, but it’s a lot less severe than it used to be.

9. Motivation to write. Like I said yesterday, this is a sign that my mood is improving.

10. The fact that I no longer live independently. I was reminded of the fact that I’m intensely grateful for this again this evening when my spouse called me because of stress related to our house. I feel a bit guilty for not being able to help, but at the same time I’m so glad I no longer have this responsibility, because when I did, it didn’t mean less stress for my spouse and it did mean significantly more stress for me.

The Wednesday HodgePodge (December 13, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday, so time for the Wednesday HodgePodge. I’m so happy Joyce, being a Christian, did her best to be inclusive by not mentioning “Christmas” specifically where it wasn’t necessary and instead writing “the holidays”. Thanks for being mindful of those subscribing to other faiths or spiritual paths or none at all! Here goes.

1. Oxford’s Word of the Year for 2023 is “rizz”. Hmmm…before today had you ever heard the word? Do you know what it means? (Apparently it’s short for charisma) Have you ever used the word? If you were in charge of the world, what word would you declare word of the year for 2023?
Never heard of it nor used it. No, I had no idea what it means. If I were in charge of the world, wouldn’t I have better things to do than decide on a word for 2023? I have no idea what word I’d declare a universal word of the year.

2. What’s one word you tend to abbreviate in your writing or speech? (as in rizz for charisma)
I can’t think of any off the top of my head. I remember in high school we abbreviated a lot. “Philo” for philosophy class, for example. My spouse said it’s a grammar school thing. I remember the Center for Consultation and Expertise consultant writing a report on me in 2018 abbreviating the Dutch word for grammar school, which is “Gymnasium” (and no, it has nothing to do with sports) to “Gym” too. This may not sound as unusual to American readers, who abbreviate their version of gymnasium all the time, but it’s a real grammar school thing to say “I went to Gym” to say your secondary school was a grammar school.

3. Are you a Hallmark movie watcher this time of year? What’s your favorite character from a holiday-themed movie, book, or TV special?
I answered this question last year too I think, to the effect that I’ve never seen any Hallmark movies. Nor have I read many Christmassy or winter-themed books. I’d say my favorite characters are Aisha and Emily from the chapter book Snowstar and the Big Freeze by Daisy Meadows (and all of that series).

4. Something you look forward to eating this month?
Cinnamon stars, of course! I always talk about those. They are a type of holiday-themed cookie by a Dutch brand called Bolletje. They come in chocolate tree and coconut bell (or vice versa) varieties too. Two years ago, I got four packages of cinnamon stars from my day activities staff in Raalte and had to share the last package before it expired in late February.

5. What’s the most stressful part of the holiday season for you?
This year, visiting my parents on the 25th. It’ll be the first time in five years that we’ll be visiting them and the first time in as many years that we’ll be together as a family (including my sister). Of course, my brother-in-law and two nieces will come too.

6. Insert your own random thought here.
I updated to iOS 17.2 last Monday, which introduces the Journal app to the iPhone. So far, the only thing I sort of like is the Suggestions thing, which Day One, my usual journal app, has made use of too, since it’s an API. I still think it needs improving on though.

Meh #SoCS

Posted on by Astrid

Hi all. Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “me”. We’re supposed to either use the word as it is or find a word that starts with “me”. The first word that came to mind somehow was “meh”. And how fitting! I am sick to my stomach again. I will spare you the details but it’s not pleasant. And I’m supposed to write lots of things, as it’s the start of #31Days2022 and Blogtober and all. Oh well.

Last Tuesday when I was sick too, it lasted only a couple of hours, so I am hoping it will go away by the evening. That way, I could write a proper post once my one-on-one leaves at 8PM. That’s of course not the main reason I want my sickly feeling to go away. I mean, if I remain sick until Wednesday, will I be able to move that day?

Of course, I’m hoping I won’t give my sickness to anyone else either. I’m not running a temperature, thankfully. My husband thinks it’s food poisoning. My staff think it’s stress. I hope in any case it will leave my body soon (and not in the way it’s leaving my body now, honestly). Oh wait, that’s a bit TMI. Oh, see, writing it down either helps or it’s indeed getting better. Let’s hope.

Joy in September

Posted on by Astrid

Hi everyone. How is it the end of September already? I pretty much forgot the month is almost over, but since it is, it’s time for me to write an update on my word of the year: “JOY”. I am linking up with Lisa’s One Word linky. I am also joining the Word of the Year linky.

September started out with good news, as, on the very first day of the month, I heard that I was first on the waiting list for what I now refer to as the prospective new care home. This gave me some renewed energy, but also stress. I was warned that the wait might still be six months or so. “That’s super quick,” my husband said. Well, those who’ve read my blog over the past couple of weeks, know that it’s gone even quicker: tomorrow, I am to decide whether I want to move to the home and, if I want to (which I do), I’ll move next Wednesday, October 5.

Considering this, the whole month of September flew by in a bit of a haze, in which I was both hyper with excitement and overwhelmed with worry. I am still both as I type this post, in fact. Consequently, I hardly found any clear moments of joy that were just that. After all, things I did feel delight or joy over, were also laden with some level of anxiety or anticipation. For example, at my husband’s and my visit to Ikea, I was thinking about what to buy for the new home.

The month of September, of course, was also the month my iPhone and Apple Watch got their updates and I got really used to my Apple Watch. For the first few weeks of the month, I was compulsively moving to get far beyond my activity goals. This past Friday, my dietitian did caution me against it. The next day, with some emotional struggle, I let a day go by when I didn’t fill all my rings. That seems to have broken the cycle, as I’m now able to be a bit easier on myself. For example, yesterday I was sick to my stomach all day, so really didn’t feel like exercising. I am relieved I am able to permit myself these days now too.

For the month of October, I am of course looking forward to enjoying real food, as the staff at the new home cook homemade meals everyday there. I am also hoping to enjoy visits from family, as I have a few planned already for the first week at my new home. Other than that, I am expecting to have a lot of getting used to at the new home, so I’m just hoping to enjoy some everyday pleasures.

My Safe Space

Posted on by Astrid

A few months ago, my former behavior specialist introduced a kind of visualization exercise to me called something like “A safe space” It doesn’t necessarily involve just visualizations though. Rather, the idea is to imagine your safe space, real or imaginary, in as much detail as you can. For today’s blog post, I’m going to describe mine.

I am in a kind of artificial forest surrounded by trees. The ground, however, is smooth, so that I can walk on it. When I want to rest, I can sit on a soft, cushioned bench in the forest. It feels like moss, but smoother and velveter. I can pull a weighted blanket over me when I want to fully relax. Of course, it’s always comfortably warm here.

I smell the scent of various plants and trees in the forest, such as lavender, sweet orange, pine, etc. They vary with the time of day or week and with the seasons, creating ever-changing combinations of aromas.

There are, of course, unicorns in the forest. The unicorns have all kinds of colors and sparkly or shimmery or glow-in-the-dark mane, creating a beautiful sight. Since my safe space is imaginary, I can see well enough to actually perceive these colors and sparkles and everything. When I feel like it, I can ride one of the unicorns. I can also cuddle with the colts and fillies. The unicorns comfort me.

There’s water in my safe space too. It has all the pros of a swimming pool (the cleanliness, smooth surface to stand on at the shallow end, etc.) but is still natural in a way. There are dolphins in the water that I can do dolphin therapy with.

I hear calm harp music and birdsong in the background when I’m in my safe space. Sometimes, the birdsong is replaced by dolphin sounds.

All combined, the unicorns and dolphins with the music, scents, and comfortable feel of the weighted blanket, will calm me.

Of course, aside from the real dolphins and the unicorns, everything I have in my imaginary safe space, I either have in my real room at the care facility or could somehow create elsewhere. I mean, I have a weighted blanket, an essential oil diffuser, a music pillow and a Spotify account to create the soothing music. The staff also offered to take me swimming once in a while again and I could obviously find a real forest (though that does not have the smooth ground to stand on). I can still imagine many colors in my mind, so this visualization exercise may help me create the colorful experience of the unicorns I described above. In truth, though merely imagining a safe space isn’t necessarily going to make me feel any calmer, it does get me closer to realizing the things I have right here in order to create it.

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