Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.

#WeekendCoffeeShare (July 12, 2025)

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a blog post. I really would like to write more, but I’m struggling massively. Today, I’m once again joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. I didn’t end up having the green tea I mentioned last week, but I might today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Honestly, I can’t remember what the weather was like early in the week, but the last few days, it’s been good: partly cloudy with some sunshine and daytime highs around 25°C.

If we were having coffee, next I’d tell you that I’m still going strong with my movement goal on my Apple Watch. I never ended up doing those fitness mat exercises I mentioned last week, because I had to cancel my movement therapy session this week. I’m hoping I can do some exercises next week.

If we were having coffee, then I’d share that I’ve been quite depressed lately. On Sunday, I was even talking ending my life and, on Monday, I had a meltdown in which I self-harmed.

The staff who witnessed me talk suicide and who was the only one able to comfort me after my meltdown, asked the behavior specialist and team manager to come and talk with me. This meeting took place on Wednesday morning, but another staff attended it with me. I was masking heavily during the meeting and constantly rationalizing my feelings away. The team manager at the end said that he was glad I was doing okay, because there’ll be a time when he won’t have time for a meeting. That plus something about things possibly getting worse. This caused my thoughts to spiral and this got me intensely desperate. I was able to tell the staff who’d attended the meeting with me, that this comment caused me distress and she would try to relay this to the team manager.

When, about an hour later, the staff who’d witnessed my meltdown etc. came on shift, I expressed my despair to her, By this time, I was inconsolable. I cried and cried and cried and was intensely hopeless.

Finally, the staff contacted the behavior specialist, who came again to talk with me and this staff. This was an okay meeting. I’m still skeptical things will improve, but not entirely hopeless.

If we were having coffee, I’d share that I’ve been reading some books about autism by autistic authors. One is The Autistic’s Guide to Self-Discovery. I’m unfortunately struggling quite a bit to concentrate on it, which in turn reinforces the belief that I’m too broken to benefit from it.

If we were having coffee, lastly I’d tell you that my best friend’s mother came by on Thursday. She brought the new nightstand that she and my best friend had bought at Ikea to replace the one that broke when I fell over it several weeks ago. She also brought me a birthday present: some colors of Sculpey Soufflé, which is a brand of polymer clay I don’t have yet.

We went to have lunch at Hema and then went to the supermarket to buy blueberries and candy bars for me and carrots for her. I also told her about my state of mind, since she’s currently my informal representative. I do want to make my best friend informal representative for me too, especially once we’re formally divorced. I still want my now mother-in-law on it too because she has the capacity to attend meetings with me. However, I mostly want to make sure that in no way are my parents or sister contacted to make decisions about me.

Reminders to My Struggling Self

Posted on by Astrid

Hi everyone. In one of my many collections of journaling prompts, I came across a prompt about what you’d like to remind yourself of the next time you’re in a downward spiral. I’m pretty sure I responded to this prompt already at least once, but I’ll do it again. After all, today is the first day in a while that I didn’t have any significant stressors. Not that I’ll likely look at this list when I’m spiraling into crisis, but oh well. Here are some notes to my struggling self.

1. I have a friend. My spouse and I may be in the process of divorcing, but that doesn’t mean we won’t stay friends.

2. I have supportive people to connect with online and in real life. I’m thinking of my in-laws, but also of my support circle online. Some of these people, I’ve known for 15 years.

3. My staff may not always do the right thing, but they mean well. Yes, it’s a myth that they’re completely working in my best interest (simply because they have other people’s and the organization’s interest in mind too), but they do want to help me.

4. I have survived much worse than I’m enduring now. This doesn’t mean that my current suffering isn’t valid, but it does show that I am strong.

5. I am allowed to feel like crap, but wallowing in my feelings doesn’t help the situation.

6. The world may not have been made for me, but that doesn’t mean I can’t work towards improving it.

7. I can still write. And I can still create with polymer clay and other materials. I can express myself.

8. I can still move. Even if walking is painful (it currently is, but thankfully less so than it used to be), I can move in other ways.

9. I know myself best and know what’s best for me. I should really use my voice.

10. Pain (be it physical or emotional) is temporary. Things will (most likely) get better.

11. I have the capacity to find joy in little things. Such as homemade latte, my staff having repaired an old handmade necklace, or a staff complimenting me on my ability to adapt that particular moment.

12. A day doesn’t need to be perfect. I don’t need to listen to what my former assigned staff at the intensive support home said: that I’m negative because I didn’t have a perfect day even when my day schedule was followed without interruption. I am allowed to say “Okay” when people ask me how I am. I am not a bad person for not being upbeat.

13. I’m not a monster for being in crisis. I am still me.

I’m joining Thursday Thirteen (even though it’s still Wednesday here). I’m also joining #WWWhimsy.

Overcoming Negative Emotions #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m really struggling and honestly, even though it’s past 10PM, I haven’t even completely decided on a topic for my letter O post in the #AtoZChallenge. I did a quick Google search for personal growth topics and the only one with an O I found, didn’t even have an O as its main first letter. It was “Overcoming fear and anxiety”. Then I realized that “obstacle” starts with an O so if we’re rebranding it as “Overcoming obstacles to mental health”, the main word does start with an O. Let’s go!

The topic of overcoming negative emotions and moods that are obstacles to mental health, ties in with many other general self-help topics. After all, many things that help people overcome mild to moderate symptoms of anxiety and depression, also help people feel better overall. These things include:


  • Mindfulness: being aware of your thoughts, feelings and actions without judgment.

  • Gratitude: focusing on the things you do have rather than the things you don’t.

  • Physical activity, including something as simple as a walk, but also running and other more intense exercise.

  • Healthy and balanced eating habits (yes, that includes the occasional treat!).

  • Making sure you get enough proper quality sleep.

  • Spiritual or religious practices, such as prayer, spells or meditation.

  • Contributing to your community.

  • Distracting yourself by engaging in a hobby, such as reading or crafts.

More specific practices that could help according to some are sitting with feelings, putting your problems into perspective by thinking that it could be worse, and forcing yourself to smile. Yes, I seriously got these from a handout in dialectical behavior therapy (DBT), a therapy approach applied to an increasing number of mental health issues. You’d be right if you thought I don’t think highly of these ideas. That is, I either focused on the wrong aspect of the teaching and the bigger picture was different, or these people are indeed horribly invalidating.

One thing that I did get from DBT that might make a tiny little bit of sense, is opposite acting (hey, another O). This means that you do the opposite of the immediate impulse your feelings and thoughts trigger. For example, if you are feeling depressed and your impulse is to lie in bed and isolate, DBT instructs you to actually go out and meet people. This is probably where the forcing yourself to smile comes in. Facing your fears is also a way of acting opposite to the emotion and this is, when done gradually, actually effective in treating mild to moderate anxiety.

Clawing My Way Out

Posted on by Astrid

There have been many times when I had to creep out of a very dark, deep pit of despair. I try not to wallow in depression, but, as an Enneagram type Four (and I in no way mean to blame that for all my shortcomings), I struggle to disengage from my feelings and actually live. That is, unless I so completely disconnect from my feelings that I’m in fact pretending they’re nonexistent, something that in turn can lead to my feelings eventually overpowering me and my falling back into the pit. When this happens, I can choose to either stay there or claw my way out and so far, I’ve thankfully always chosen the latter!

I’m thankful that, even though it’s fall and this is usually a season for misery and melancholy for me, I haven’t found myself in the dark valley yet. Let’s hope I can skip it this year!

This post was written for this week’s edition of Six Sentence Stories. The prompt word is “claw”.

Gratitude List (April 26, 2024) #TToT

Posted on by Astrid

Hi everyone. How have you been? I’m participating in Ten Things of Thankful with a gratitude post once again. It’s been a while. I however have quite a few thankfuls to share, I think, so let’s go.

1. I’m grateful for homemade pizza. My spouse, mother-in-law and I made it together at my in-laws’ house (my father-in-law wasn’t there) last Saturday after the CP conference.

2. I’m grateful for a side-by-side bike ride on Sunday. I was assigned an extremely tall staff member for my one-on-one and, for those not aware, I am short myself. This makes walking with him quite a challenge, as we haven’t yet figured out a way for him to guide me that doesn’t cause me pain. However, I came up with the idea of biking instead.

3. I am grateful for the fact that my attempt at making overnight oats on Monday turned out to be a success! Last time I made them, I added way too much milk.

4. I am grateful because, on Tuesday, I was able to cook köfte for my fellow residents and staff. It took me quite some time, but that’s not a problem.

5. I am grateful for French fries on Wednesday. Oh, I’m making more than half of this list about food, but okay.

6. I am grateful for an opportunity to go swimming yesterday. I had gone swimming twice last week, once with my own home’s residents and once with a small group. I hadn’t expected to be able to join the small group this week again and swimming for my home was canceled because most residents were on the annual trip. However, I was able to join the small group anyway.

7. I am grateful for a trip to the institution museum this afternoon. It’s a really small museum, but it was interesting to learn about the history of the institution. Plus, we got free mini pancakes! Oh wait, that’s another food-related thankful…

8. I’m grateful for a day without rain today. We had rain most of the week and, though I could go on walks everyday inbetween showers, I couldn’t go out nearly as much as I’d have liked. Today though was a rain-free day and we even had a bit of sunshine.

9. I am grateful for an appointment with the nurse practitioner who works at my local GP practice re my decreasing mobility. I’ll have a physical therapy appt soon too but I’d really like to know what’s causing my mobility impairment (CP or something else) and whether a decrease in mobility is to be expected or what can be done about it.

10. Last but not least, I am so grateful I seem to be slowly crawling out of the pit of depression I was in.

Daily Habits For a More Meaningful Life

Posted on by Astrid

Hi everyone. Today was a good day for once. I went swimming for the first time in a long while. No, that’s a lie, since I went swimming with my fellow residents yesterday too. What I meant is that I was originally allocated this spot on Thursdays for swimming but haven’t been able to go yet for staffing-related reasons. Yay for an opportunity to go today!

This isn’t something I can do everyday or even each week, but there are lots of activities I could incorporate into my daily routine that will give me a more meaningful life. Today I’m joining Thursday Thirteen with a list of those.

1. Shower or wash myself. Personal hygiene often goes out the window when I’m depressed. Though I don’t really see its point in boosting my mood, in that for me the feeling of being clean doesn’t do that, I can at least say I accomplished something that day.

2. Brush my teeth. Same as above really.

3. Meditate. I’m not the kind of woman who is good at long body scans or the like, but I do love shorter, affirmation-based meditations.

4. Journal. This is something I don’t do nearly often enough. I really should be incorporating daily time to journal into my calendar. I love writing stream-of-consciousness style, but this isn’t usually suited for this blog.

5. Read. I don’t mean I should be reading a novel a day or something. Even a chapter in a children’s book could count. Like, today I read a few chapters in the second book in the Unicorn Academy series.

6. Diffuse some essential oils (or fragrance oils) in my diffuser. I’m not a strong believer in aromatherapy. I mean, I’ve literally slept like a log smelling a combo of all citrus oils over the past few nights. I do believe smelling good scents can help my mood though.

7. Listen to music. I really feel that music, any kind of music, can be good for my mental health. Whether it’s soothing instrumental music to sleep to or loud EDM when I need a confidence boost.

8. Walk. I do this almost each day already, but I’m adding it to this list anyway in case there’s a time when I forget about its importance in boosting my mood.

9. Move in general. I was going to list dancing as a separate item on this list, but then, though it would be easier to get to thirteen, it would be harder to incorporate everything into each day. I honestly feel that movement in general, whether it is dancing, yoga, cycling, swimming or whatever, helps my mood.

10. Drink a cup of green tea. I definitely feel that a daily cup of green tea could add to my mental wellbeing. Maybe it’s the fact that I usually have those with the staff members I trust a little when talking though.

11. Talk to other people, reach out for support. When there’s a day I cannot talk to any staff because there are all staff I don’t trust, I can always talk to my spouse or mother-in-law.

12. Write down my positives and negatives for the day. This usually helps me remember that, even on the hardest days, there are some moments I’ve felt okay.

13. Remember: pain is temporary, giving up is forever.

Reminders When I’m Feeling Like Life Is Pointless

Posted on by Astrid

Hi everyone. Like I said on Saturday, I’ve been struggling lately. It’s been so bad that I’ve actually been considering talking to my doctor about options for medication. I mean, I’ve been tapering my antipsychotic aripiprazole (Abilify), which is sometimes used as adjuvant medication to treat depression. However, I honestly struggled with mild depression already before starting my taper.

That being said, I really need to remind myself of the things I have in life. For this reason, I started a list of positives and negatives for each day that I’ll send to my second assigned staff weekly. She is more socially adept and empathetic than my other assigned staff, which is why I have her to discuss my personal issues with. Anyway, I allow myself to list the negatives too, which sometimes outweigh the positives, but the last few days, the positives have outnumbered the negatives.

For instance, today I had as a positive the fact that I finished a pair of polymer clay earrings. Okay, I haven’t yet seen how they turned out, but who cares? The process is more important than the outcome. I also listed as a positive the fact that I had a good online meeting with the regional branch of CP Netherlands, the Dutch cerebral palsy alliance.

I listed one negative, ie. the fact that I got slightly stressed out when my male assigned staff asked me some questions about swimming. I’m supposed to go swimming in a group on Thursdays but this hasn’t happened yet due to staffing issues. I have tried to jump through all kinds of hoops to accommodate the staff and felt like I was being pushed around. Thankfully, tomorrow (Wednesday), it turns out, I’m allowed to try out swimming with my fellow clients.

I think that, when I’m in a downward spiral and particularly when I feel like my world is becoming smaller and smaller and life is pointless, I need to remind myself that there are still lots of things I can do even though I’m at home a lot. I could read, watch YouTube videos, blog, scroll on social media, do all kinds of crafts. Honestly, in fact, when a staff is entertaining, even a dice game can be enjoyable. And the entertaining factor is a two-way street. After all, I noticed this with a staff yesterday with whom I hadn’t gotten along a few weeks back. He was about as unengaging as could be and left 15 minutes early, but then again I treated him badly first by refusing to explain my routine because “it’s not my job to train temp workers”. It isn’t, technically speaking, but I could’ve been kinder. Yesterday, he actually made our game of Yahtzee fun.

I do still think my world could be enriched. I also feel this isn’t a cure-all for my depressed mood. Some of it comes down to grief, too. Grief for having lost the support I had in late 2021, when I was 95% sure I wanted to stay in Raalte. “Make that 98% please,” the manager said. Not even half a year later, it turned out, either she or some other people involved there were glad I was asking to leave. That angers and saddens me to this day, but wallowing in these feelings won’t help. Involving myself in positive activities might.

I’m joining #WWWhimsy.

#WeekendCoffeeShare (April 13, 2024)

Posted on by Astrid

Hi everyone. How have you been? I’m joining #WeekendCoffeeShare today. I’m writing this post in the afternoon on Saturday, but might not finish it until the evening as I’ll try to fully enjoy my one-on-one support time while there’s staff I get along with well in the home today. It’s a little warm for coffee, so if you’d like a cup of that, fine by me, but I could also offer you orange and tangerine-flavored Dubbelfrisss. I also should still have a couple Mars ice cream bars in the freezer. Let’s have a drink or ice cream and let’s catch up.

If we were having coffee (as I always say), first, I’d talk about the weather. It’s been on the warm side for April here. Last week Saturday, the daytime temperature even rose to 25°C. Yesterday and today, we got daytime highs of 21 and 22°C respectively. The rest of this week, the temps have been lower and we did get some rain. Next week, we’re supposed to get daytime temps barely above 10°C, which I don’t like. However, that’s probably closer to normal.

If we were having coffee, next I’d tell you all that I’m still going strong keeping up with my physical activity by walking everyday. So far, I’ve closed all three of my activity rings on my Apple Watch each day since the beginning of the month (and possibly a few days at the end of March too. I’m aiming for a perfect month with respect to my movement ring at least, which I haven’t had since last September.

If we were having coffee, I’d share that I finally got the long-awaited orthopedic shoes. They fit well, but the brace that’s in them doesn’t effectively help my really bad drop foot and as a result, the left shoe got noticeably damaged after only two fifteen-minute walks.

If we were having coffee, I’d tell you that, last Sunday, my spouse and I together worked on a polymer clay project. I’d proposed we create a unicorn, but my spouse came up with the idea of crafting a triceratops (“unicorn dino” with three horns) instead. It was fun, but definitely an exercise in letting go of my need for control.

Polymer Clay Triceratops

If we were having coffee, I’d tell you that the rest of the week was quite hard. I’ve been struggling with feeling quite depressed lately. I have been feeling like my world is becoming smaller and smaller with all the things I cannot do. It’s been more so on my mind lately given that many of my fellow residents are going on the home’s yearly week-long sleepaway camp at the end of the month and it’s not even been asked to me directly whether I wanted to go too. Rather, I overheard the staff talking about the camp a few months back and mumbled about it not appealing to me and that’s the end of it. I’m supposed to stick to my day schedule, which currently consists mostly of walking around institution grounds and playing dice games. Some staff say I might be able to be in the communal room more, but to be honest I don’t care about being in the communal room just sitting around.

Yesterday, I tried making a cheesecake with my assigned staff in the communal room but got overloaded by one of the other clients (who will stay here during the camp as well). It led me to spiral into a massive emotional outburst. After all, now everyone tells me I’ll never have a better life anywhere anyway so I’d better accept the life I have now. Why didn’t anyone tell me this two years ago? The answer is simple: at least some of the people at the care facility in Raalte secretly wanted to get rid of me. This is intensely saddening to me.

If we were having coffee, I would end on a positive note though by saying that one of the staff who told me to accept my life yesterday, offered to take me on a short car trip to Deventer this afternoon. We had a cup of coffee (I decided to buy both of ours) and walked around the marketplace, where the staff bought me a stroopwafel and I bought a small serving of garlic-filled olives.

Flash Fiction: November

Posted on by Astrid

She had always felt that November was the hardest month. Filled with enough darkness to completely cloud her mind, but not enough cold to freeze her thoughts. It didn’t help that the month was filled with just a little too many memories of her totally losing the grip on life. She realized maybe the crises were more a result of her depression than her depression being the result of her memories, but either way she seemed stuck. No therapy or medication had been able to alleviate the gloom that was November yet.

It wasn’t like she exactly wanted to die. Not during these crises and not now. Sometimes though, she looked for an exit, an escape from the deep pit that is this month. Maybe, she mused, snow would be the easy way out.

This post was written for this week’s Prosery. It’s more than a little autobiographical, but since our pieces have to be flash fiction, I decided to write it in third person perspective.