Like a Rolling Stone… #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday is “favorite place”. I am not a fan of traveling, so I have absolutely no idea what my favorite place to go on vacation would be. I did go on a postponed honeymoon in 2012 to the Swiss town of Zug and it was beautiful. That is, walking through the mountains was quite an experience. The town itself was full of top-notch expensive cars.

We haven’t been on vacation since 2014 and, though my best friend and I (my best friend currently still being my spouse, for those who don’t know) have discussed vacation plans, neither of us is keen on going anywhere, honestly.

I would probably be considered a homebody. Except, what is my home? My staff often refer to the care home as “home” when talking to me, but it still feels off. And though I have no plans of traveling to any exotic locations anytime soon (or ever, considering most truly exotic locations are not easy to get to for someone who hates flying), I wouldn’t consider my room in the care home to be anything close to a favorite place. Or maybe it’s my least hated place out of all. After all, I’ve never truly felt home anywhere. Not with my parents, not in independent living or with my spouse nor in any of the places in the care system I’ve resided in.

I guess I’m like a rolling stone. After all, I’ve never truly connected to any particular place. This feels sad.

#WeekendCoffeeShare (April 27, 2025)

Posted on by Astrid

Hi everyone. I really wanted to write a #WeekendCoffeeShare post yesterday, but was dealing with neck and shoulder pain and was quite tired, so I lay in bed by 9:30PM. I originally intended this to be a quick lie-down and planned to write my post after my music pillow had auto-disconnected after thirty minutes. Well, before those thirty minutes were up, I set the pillow to keep playing until I either manually turned it off or its battery was empty. Guess what? I know for a fact that the latter happened sometime during the night, because the pillow was no longer connected when I woke up at 8:30AM, but I swear I didn’t hear its pretty loud sound indicating it needs charging. I slept like a log!

Anyway, all this to say I’m doing my coffee share on Sunday evening. I’ve just had my last cup of coffee for the day, but I can serve you some soda or tea. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. We’ve had some rain, some sunshine and some clouds. Today, the daytime temp was 19°C. We’re supposed to get almost summerlike temps of 23-24°C this coming week.

If we were having coffee, next I’d share that I’ve been crafting again. I made several polymer clay frogs for staff members who are recovering from surgery. The frog (Dutch: “kikker”) is sometimes used as a symbol for cheering someone up (“opkikker”). The first one took me over an hour to finish, but the second one was so much easier once I’d figured out how I wanted it. Here’s the second one.

If we were having coffee, then I’d tell you that I have a new assigned staff. One of my two assigned staff is on long-term leave for familial reasons and the other is a student. I had been a bit angry at the student for various reasons, among which her way of communicating the temp worker situation with me. The new one will be my assigned staff together with the student. I can get along with her pretty well.

If we were having coffee, finally I’d make use of the fact that I write my coffee share on Sunday to share that my spouse and I had an important discussion today after our outing to have lunch and shop. We have made up our minds that we’re getting divorced. We will continue to be best friends, but since there’s no sexual or romantic component to our relationship and we’re not living together nor intending on ever doing so again, it makes sense that we officially divorce. We have been having this on our minds for several months already, so the discussion, though hard, wasn’t altogether a surprise to me. We mostly need to work out how much my spouse owes me for my contribution to our mortgage, so that the house can be completely my best friend’s and no longer mine. I guess I will from now on refer to my spouse as my best friend to ease the transition for me.

It may seem like I’m not affected emotionally by this decision, but I am. I mean, I’ve mentioned a few times that my spouse and I will always be soulmates, but the fact is nothing is for certain. When we got married after all, it was to affirm our everlasting love to one another. Though our feelings for each other haven’t changed all that much since we first met in 2007, there’s this voice in me telling me this is the beginning of the end. I tell myself this is attachment anxiety talking. Whether it is or this fear is real, doesn’t really matter in the present moment though, as right now we’re still soulmates.

How My Personality Has Evolved Over the Years

Posted on by Astrid

Hi everyone. Today, in her Sunday Poser, Sadje asks us how we’ve changed, personality-wise, as we’ve grown up.

The first way in which I’m far different from what I was like as a teen, is my self-expression. I am much, much more open about myself and my inner world than I was when I was younger.

Oh wait, I need to nuance that statement slightly. There, after all, was a time in my late teens and early to mid twenties, during which I was more open about myself than I am now. On my first blog, which I started as a diary in 2002 and moved to WP in 2007, I probably showed a little (a lot) more of myself than would be considered normal. Also, no-one probably remembers that I had my current blog URL for a few months in 2011 too, but I do. I particularly remember with a sense of shame a post one of my alters wrote just after I got married saying my spouse probably doesn’t even love me. Well, now nearly fourteen years on I’m convinced that my spouse does love me, but even if I didn’t think so, a public blog wouldn’t be the place where I’d spill my guts.

I do believe that, even though I was extremely private as a teen, the willingness to share my thoughts was always there. I just didn’t trust my audience at the time, ie. my parents and teachers. Now trusting the whole world isn’t necessarily safer, which is why I’m no longer as candid as I was even seven years ago when I started this blog.

Another way in which I’ve changed, which might be related to the above, is that I’m generally more outspoken and assertive than I was as a teen. I still oscillate between passive and aggressive a lot in daily interactions, but where it comes to major life decisions, I’m not as dependent on the approval of others as I was.

Lastly, I’ve probably become less judgmental than I was in my teens. I’ve also become less arrogant. I mean, back then I looked down on people with intellectual disability or those who were less educated than I was in general. It did take me having to rely on the care system myself in order to change that.

As a result of being less judgmental towards others, I have also become less hard on myself. That doesn’t mean that the voice telling me I should be able to live fully independently, isn’t there anymore. I am however able to channel that voice into prioritizing my need for self-determination.

Love Languages and Relationship Development #AtoZChallenge

Posted on by Astrid

Hi everyone. Today for my letter L post in the #AtoZChallenge, I want to write about love languages.

First of all, what are love languages? Love languages, in general, are the ways we primmarily prefer to receive or give affection.

That being said, the concept that there are different love languages was first populated by Gary Chapman in his 1992 book The Five Love Languages. The five love languages, according to Chapman, are:


  • Physical touch, such as hugging, kissing and holding hands.

  • Gifts: expressing love through giving meaningful gifts that symbolize the relationship. For example, my spouse giving me a stuffed teddy bear holding a heart.

  • Quality time spent together. For example, my partner and I often go to Apeldoorn together.

  • Words of affirmation: compliments or other verbal expressions of appreciation. I think cute nicknames are a part of this too.

  • Acts of service, such as my spouse having put together my Ikea cabinet.

Of course, as you can see above, people in a healthy relationship share all love languages, but Chapman believed each of us has a primary and secondary love language.

Chapman believes that people often naturally express their love in the same love language they would like to receive love in. For example, if one person usually takes other people on outings, their primary love language might be quality time and this then is the way they’d like their partner to show them love. For instance, in this case the person would really like their partner to spend quality time with them.

Then, if the partner’s main love language is physical touch, they will more easily start hugging the other person rather than spending quality time with them. This may lead to awkward situations or even conflict, because maybe the other person doesn’t like to be touched. As such, it is important, according to Chapman, to know your partner’s love language and learn to express your love in that language when interacting with them.

So are the five love languages backed up by science? The short answer is “No”. First of all, there are more ways to express love than just these five. Secondly, though there is some research that shows people lean more towards certain love languages, it isn’t true that people have just one primary (and one secondary) love language. In fact, as you can see above, my spouse and I use all five and more.

Grief: Dealing With Loss (Of Any Kind) #AtoZChallenge

Posted on by Astrid

Hi everyone. I’ve been struggling a lot lately again and, as a result, today am particularly late writing my #AtoZChallenge contribution. Today’s letter is G and I want to talk about grief.

Grief can refer to a person’s reaction to losing a loved one to death. That’s the most heard of definition anyway. Grief for a loved one who has passed away can last very long and, in fact, isn’t considered abnormal for the first year. If a person still experiences significantly distressing symptoms of grief more than a year after their loved one has passed, they may be diagnosable with prolonged grief disorder (also known as complicated grief).

Grief, of course, can also refer to the distressing symptoms experienced after losing a beloved pet. It doesn’t matter in this respect that the pet isn’t human; grief can still be experienced very deeply. I mention this because, like I said on Saturday, my spouse and I lost our cat Barry that day.

Grief, however, can also relate to distressing symptoms experienced after a loss that isn’t due to death. For example, heartbreak is in a way grief too. So are the distressing symptoms I experienced when losing my sight and, later on, many acquired skills due to autistic burnout.

Most people will be familiar with the five stages of grief described by Elisabeth Kübler-Ross. These stages are denial, anger, bargaining, depression and acceptance. In reality though, many people will not necessarily experience these stages in order and they may fall back due to stress. Still, many of the symptoms associated with the earlier stages in this model, made it into the criteria for prolonged grief disorder. Symptoms of prolonged grief include:


  • Identity disruption (eg. feeling as though a part of oneself has died).

  • Marked sense of disbelief about the death.

  • Avoidance of reminders that the person is dead.

  • Intense emotional pain (eg. anger, bitterness, sorrow) related to the death.

  • Difficulty reintegrating, such as problems engaging with friends, pursuing interests or planning for the future.

  • Emotional numbness (absence or marked reduction of emotional experience).

  • Feeling that life is meaningless.

  • Intense loneliness: feeling alone or detached from others.

Of course, people can experience many of these symptoms without having lost a loved one to death. Emotional numbness and avoidance of triggers, after all, are also symptoms of post-traumatic stress disorder. Many other symptoms occur in people who were traumatized in some way too. As an example, I relate to all symptoms when the aspect of bereavement is removed, and not just since Barry was put down. I don’t know whether that makes sense, but oh well.

March 2025 In My Kitchen

Posted on by Astrid

Hi everyone. I enjoyed the linky last month, so am participating in In My Kitchen again.

As regular readers of my blog will know, I don’t have my own kitchen because I live in an institution. We also usually get our dinners from a meal delivery service. Last month, I shared that I was hoping to do some more cooking in March. Guess what? I cooked dinner for myself and my fellow residents twice this past month.

First, on March 5, I cooked pasta with pesto, chicken and broccoli. My spouse joked after seeing the picture that the pine nuts were on sale. In reality, I hadn’t originally planned to sprinkle the pasta with pine nuts but my staff had loads of them, originally intended for her parrots, who don’t even really like them or that’s what she said.

A little over a week later, I cooked pasta again. This time, I included shrimp, lots of garlic, peppers, a few packages of mixed veg and, because according to me this was too little for ten people, a few bell peppers too. I needn’t have worried, because everyone had enough to eat and there were still a few servings left to go in the freezer.

I also made a few smoothies using my blender. Unfortunately, last week I found out that, somehow, the ring-shaped thingy that keeps the blades in place, had broken. I erroneously thought this meant the entire blender should be discarded. Yesterday, my spouse and I went to the electronics store and bought a new one, actually I believe it’s the same one I had. I also recently learned that I can actually make more smoothie with my blender than I used to think. After all, when you fill up the blender with fruit, veg or whatever you’re blending, you shouldn’t fill it up fully. Until recently, I however thought that this means you’re left with only, say, half the blender’s content of smoothie and that’s it. I never realized that you can add more food once the blender has finished blending some of its contents. Stupid, I know, but oh well.

In other kitchen-related news, my assigned staff has told me that she’ll add a weekly cooking activity into my day schedule. I don’t yet know when this is going to happen, but I did hear that my one-on-one support has been approved until the end of 2026 again. Yay!

Today’s Small Joys (March 16, 2025)

Posted on by Astrid

Hi everyone. I’m struggling a bit but don’t want to share why. Instead, I’m sharing some small joys from the day again today. I’m participating in Sunny Sunday. Here goes.

1. Sunshine. It’s chilly (about 9°C in the afternoon) but sunny. With this being the case, my partner and I were even able to sit outside for our lunch.

2. Good coffee. The lunch we had was a bit disappointing to me especially considering how much it cost, but the coffee was good.

3. Being able to wear a nice, handmade necklace and being complimented on it by my spouse. I bought glass beads and wire a few days ago and I created my first necklace with them yesterday. I wore it today, which made me feel good.

4. Finding a couple more necklaces, most handmade by me many years ago, in the bag my spouse brought me after clearing out the house.

5. Unicorn soft toys. I was clearing out my box of stuffies this evening, because my spouse had also brought me some stuffed animals and my box was already quite full. I didn’t seriously know how many unicorn soft toys I have. Those, I all kept.

6. Looking forward to the sensory room the staff are creating on the other side of the home. I actually plan to donate some of my unwanted soft toys to that project.

7. Finding one of my first polymer clay creations in the bag too. It’s a baby. It’s extremely ugly, so I threw it away. However, remembering my making it, as well as realizing how far I’ve come along on my creative journey, made me smile.

Honestly, many of these things are more nostalgia-inducing than purely joyful. Remembering the good times is a positive thing though, so I’ll still focus on that.

Share Our Life (March 2025): An Average Day

Posted on by Astrid

Hi everyone! Today I’m joining Share Our Life, a linky with a monthly theme. This month, it’s to describe an average day in your life. Unfortunately, taking pictures is not part of my average day. I really want to change that, but for now, just text will have to do. I didn’t pick a specific day to describe.

I usually wake up at around 7:30AM when the staff are helping the resident in the room next to me with her morning routine. Since my first support moment isn’t until 8:15AM, I usually have a little snooze.

8:15AM is when my staff come to wake me up and help me with my morning routine. I hate showering, so don’t do it each day. I get dressed and have breakfast – usually quark with muesli and blueberries. My morning routine, including breakfast, can take up to an hour.

At 9:15AM, I’ll usually lie back in bed for a little slumber while listening to music on my music pillow.

My first activity time slot starts at 10AM. I sometimes extend my lie-in until 10:15 or 10:30AM. I start my activity time slot with coffee and then I’ll usually either play a card or dice game or go for a walk.

By 11:30AM, my staff leave to prepare my lunch. I usually eat two slices of bread with peanut butter and a cracker with speculoos (Biscoff). I also consume a serving of veg with my lunch. My lunchtime is at noon.

By 12:15PM, I’m done eating and will be on my phone for a bit, reading the news or texting or calling my spouse, who is then usually taking a break.

My two-hour activity time slot starts at 12:45PM. This time slot was originally intended for more time-consuming activities such as a bigger polymer clay project, going out to the nearby town, etc. Occasionally, I’ll use this time slot for cooking dinner for myself and my fellow residents. Often though, I can be found walking grounds with my staff. I’ll end my activity time slot with coffee, although I might also have a cuppa by 1:45PM already.

My staff go into handover at 2:45PM and I’ll most days use up the 45 minutes until my next supported moment with some online activities. By the way, handover doesn’t take 45 minutes, but it’s not like I need one-on-one all of the time.

During my 3:30PM activity time slot, which lasts an hour, I commonly play a dice game. I sometimes also go for another walk. I have unsupported time again for 30 minutes after this while my staff help the other clients with their dinner. My dinner is at 5PM. I am a rather fast eater, so am frequently finished by 5:15PM. My staff have their break at 5:30PM.

At 6PM, my final activity moment for the day starts. I have an activity list, from which I can choose what we’re going to do. What we’ll do, is too often related to the staff supporting me. I really want to change this, but it’s hard.

I’ll have my final coffee at 7PM and then have unsupported time again until it’s time for my late evening meds at 8PM. I’ll most commonly use this time and the rest of the evening for blog-related activities.

Like I’ve shared many times, I usually have Dubbelfrisss in apple-peach flavor with my evening meds. I also will eat a serving of fruit. Then I’ll be told which staff will be in the home the next day. Some days, I’ll hang out in the living room for some time then, while at other times, like today, I’ll head straight back to my room and go online. I used to be phoning my spouse a lot late in the evening too, but now we’ll often talk at other times.

At 8:45PM, I’ll sometimes have a little snack. Then I’ll go online again until my staff come to supervise me brushing my teeth and to close my door to the yard at 9:30PM. After that, the staff will leave the home and I’m supposed to rely on the night staff in the main institution building for support. My fellow residents all go to bed before then, but I’m allowed to stay up. I’m a true night owl, so most days it’ll have been past 11PM before I’m in bed.

All this sounds incredibly boring and unproductive. I really want to put my unsupported time to better use, because currently most of the time I just end up scrolling.

Today’s Small Joys (March 2, 2025)

Posted on by Astrid

Hi everyone. I’m struggling intensely today. I often say that these days are the best for gratitude lists, but I don’t feel capable of doing an entire ten things of thankful. Instead, I’m going to list some small pleasures from today. I’m joining Sunny Sunday.

1. Coffee. My staff brought me an extra cup of coffee when waking me up.

2. Crunchy muesli. I treated myself today.

3. Earning some top commenter achievements on Reddit. Don’t ask me how.

4. Beautiful weather: it was quite sunny and mild with a daytime high of 10°C.

5. A delicious burger at McDonald’s.

6. A hug from my spouse. In fact, the entire visit was good. Having my spouse on my side genuinely helps.

This was easier than I thought. In fact, the E-mail newsletter I got this idea from, suggested listing only one to three things and I made it to six.

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.