Thankful Thursday (February 19, 2026): I Still Have Hope…

Posted on by Astrid

Hi everyone. Today is Thursday, so I thought I’d try to create a post focusing on thankfulness. It’s been a rough week with me having a zillion ideas of things to do but no way to put them into action. I’m still struggling with the lack of structure in my day schedule, which means I have no way of planning any activities.

That being said, I keep having hope. Sometimes I feel that hope is my enemy, in the sense that it’s the only thing keeping me alive and what if it’s idle hope? What if the powers-that-be are unwilling to help me create a more meaningful life and they’re just keeping me in the dark about it because they know things might take a turn for the worse if they tell me?

Let’s focus on gratitude though. Today, I cut up the bell peppers me and my fellow residents had as a side with our lunch. I also went shopping for groceries with a staff. I bought some ingredients for making smoothies and breakfasts, as well as a poke bowl I had for dinner today. That was good.

This staff used to work here until last summer and was one of my favorites. She occasionally still subs here. I feel a little guilty having been so vulnerable with her today as to show her that, in all honesty, I don’t feel my life is meaningful at this point. Thankfully, she did have her regular coworkers write down how much I’m struggling.

I also wrote an E-mail to my assigned staff and support coordinator this evening. My assigned staff is on sick leave again, but she said she’d check her E-mail regularly. I explained the thing I’m struggling with most again, ie. the fact that I experience a lack of meaningful day activities despite sufficient one-on-one hours. The most frustrating part is the fact that it’s not about budget or staffing, so that I honestly don’t see why I wouldn’t have gotten a more structured day schedule months ago.

My support coordinator said a few days ago that she’d get back to me about the issue on Sunday. I doubt anything significant is going to become of it, but the sliver of hope that things might improve, is keeping me going.

For now, what is also keeping me going, is actually thinking up ideas of things to do when the staff are more willing and able to help me create more meaningful activities. Here, I said “when”, not “if”. Does that mean something?

Trying to Celebrate Small Wins #JusJoJan

Posted on by Astrid

Hi everyone. I have been struggling with mixed feelings about my day schedule and the things I accomplish or don’t accomplish during the day. Sometimes, I feel like there’s been quite a lot I’ve done, but on other days, I focus on the hours I’ve spent staring at the wall.

The difference isn’t just dependent on how much I actually did in terms of crafting, cooking, walking, reading, etc. It’s sometimes also a matter of perspective. I mean, I spent most of my allowed activity time slots just chatting with staff today. I could focus on that and on the fact that, with some help, I could’ve turned them so much more productive. Then again, I could also focus on the things I did achieve. Today, for example, I crafted a polymer clay snake.

It frustrates me to no end that my day activity goal is so vague that it’ll be achieved regardless of what I do or don’t accomplish during the day. I had worded the main goal myself, saying I’d like to do at least one meaningful activity each day. To this, however, my then assigned staff added examples, including dice games, and a caveat that if it looks like I’m in distress or tired, the staff can suggest doing smalltalk or extra moments to lie in bed, saying everyone needs rest. By this logic, each day is meaningful even if I’d spent it entirely in bed.

And that’s not entirely untrue. What makes it untrue is the part where staff decide for me which activities give me meaning and when it’s appropriate for me not to engage in them. In other words, it’s worded as an excuse for staff not to help me find and engage in meaningful activities. If I chose to lie in bed all day, like I did last September when sick with probable COVID, it’s quite different from all the times staff have suggested I lie down. If I chose to be lazy, it’d be on me, but if the staff choose to be lazy and twist it to mean they’re meeting my needs, we’re having quite a different situation.

I do try to celebrate the small wins though. Like today’s snake. That doesn’t mean I can’t wish for improvement, particularly because a lot could be improved without me getting more support hours. Would it be harder on the staff? Possibly, but not necessarily. I mean, listening to me moan about my quality of life, is no doubt exhausting to some staff too. And besides, it isn’t my task to make staff’s work day meaningful.

However, it does help me personally to focus on the things I do achieve rather than the things I don’t. I’m genuinely happy about the snake I crafted. Yesterday, I even did two crafty activities and met my movement goal on my Apple Watch by walking. I try to celebrate that. Celebrating my small wins gives me joy.

This post was written in response to today’s prompt for #JusJoJan, which is “celebrate”.

#WeekendCoffeeShare (December 27, 2025)

Posted on by Astrid

Hi all! Can you believe 2025 will be over with in less than a week? I honestly can’t. I’m joining #WeekendCoffeeShare again. It’s past 8:30PM, so no more coffee for me. My favorite soft drink wasn’t cold, so I had water with my evening medication today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. We had a frigid Christmas with a daytime high of -1°C. Today, the daytime high is 4°C. That’s still below-average for this time of year though and it’s still freezing at night.

If we were having coffee, next I’d tell you I finally let go of my movement streak on my Apple Watch. That is, like I said before, I was cheating all the while because I’d paused my rings when sick last September. On Christmas day, it was freezing cold, so I didn’t care for a walk. I could’ve cheated again, but didn’t.

If we were having coffee, next I’d share about my Christmas. I was at my and my wife’s house for the night. Christmas is often stressful with family issues and forced cheerfulness, but this year it was genuinely okay. Then again it was just the two of us (plus my wife’s cat, who was in hiding from me almost all the time).

The best part was my Bastogne cookie dessert. It was my idea to make this and I helped crumble the cookies and lended my wife my hand mixer. The recipe though was for eight servings. We made half of that, but of course it’s still a lot for just two people. The rest of the meal was good too.

If we were having coffee, then I’d tell you that I decided to give the staff who’s retiring next week her polymer clay “cheer up frog” on Sunday rather than wait for her last shift. She was very pleased with it.

If we were having coffee, finally I’d share that, yesterday, I decided to download yet another self-care app on my iPhone. I already used to have a ton of them, like I’ve had a ton of different apps for all kinds of things over the years. This one, I downloaded because I read on another blog about affirmations and wanted to do these again. The app this blogger uses, Labyrinthos, isn’t all that accessible with VoiceOver and its paid plan is a little outside of my budget. Besides, much as I love to dabble in tarot (which this app is mainly about), the cards are still mainly visual. This got me looking for other apps for affirmations and gratitude etc. The app I downloaded is simply called Gratitude. So far, I really like it. I’m really hoping to make positivity a bigger part of my life in 2026.

I Don’t Owe Anyone a Grateful Heart

Posted on by Astrid

Hi all. Today’s prompt for Reena’s Xploration Challenge is quite fitting. Reena asks us to ponder the paradox of gratitude and resistance.

Sometimes, by being grateful, we can bring about change. I am reminded of a story in one of the Chicken Soup for the Soul books in which nurses on one floor were irritated with another floor’s nurses for their constant negativity. Instead of fueling the conflict by becoming negative themselves, the nurses wrote a lengthy gratitude letter to their colleagues. I am not sure whether this was exactly what the story was about, but this was at least the message I took from it. The fact that the one group of nurses focused on the positive rather than giving in to the other group’s toxicity, turned the situation around for the better.

At other times though, particularly when there’s a power difference between two people or groups of people, gratitude becomes passive resignation. In this case, while it can be helpful in the short term to the oppressed person to keep a positive outlook, if the oppressor takes gratitude as acceptance, in the long run nothing will change.

I will give an example from my own life. Regular readers of my blog know that I’ve been accused of having a negative attitude by many people in positions of power, such as my care staff and treatment providers in various care settings. An example is being told I ought to be happy that anybody wants to work here at all. Well, no. While it’d be easier for me in the short term if I could just accept the umpteenth random stranger for my one-on-one care, in the long run it’d mean I’d always get assigned the random temp worker because regular staff would rather support the others and chill out with other regular staff while they can. Besides, even if it’d cost me less effort to resign than it costs me to rebel, I don’t owe my staff a positive attitude. If there’s anyone for whose sake I should have a grateful attitude, it’s myself.

It doesn’t mean I don’t struggle with this whole idea. I feel intense guilt whenever a staff throws some variation of “be happy anyone wants to work here” at me. I am also constantly reminded in my head of my assigned staff at the intensive support home, who was disappointed in me for never having a perfect day even when they’d followed my day schedule completely and had always assigned me regular staff. Which, for the record, never happened.

I, for clarity’s sake, don’t think violent resistance is the answer. When I have a meltdown over some rule I disagree with, being aggressive will always end in me being restrained. However, there’s a whole world between aggression and passivity. And sometimes, unfortunately, the people in positions of power are so caught up in their reality of being the ones to decide, that they (either willfully or not) ignore my less obvious attempts at resistance.

For example, last week I was trying to resist the “one chance” rule about orienting new staff. I tried going along with what the staff wanted, but this only led to further abuses of the rule. I tried talking sense into the staff, but this didn’t work either. Finally, on Saturday, I had the most massive meltdown. I am not proud of my behavior at all. In fact, I really wish I could’ve solved the issue without being aggressive, if for no other reason, then because the staff are far stronger than me and I ended up being restrained. In the end, I thankfully finally got a meeting with the behavior specialist on Monday and the rule got ditched. Now all I can hope for is that my main message, that I have to consent to every individual rule or agreement affecting me unless the behavior specialist uses the Care and Force Act, got through to everyone.

Simple Pleasures #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “simple”. When I saw the prompt yesterday, I immediately thought I had to write about simple pleasures. You know, the little things that make life worth living when all else seems rather grim.

I could of course nag on about the cup of green tea. The one I got at 9PM one day over six weeks ago and that, while enjoyable, also triggered a flood of negative emotions because, really, is life all about a cup of tea? That being said, I’ve tried to make it a more regular habit to ask for a cup of tea at around 9PM.

Most of the simple pleasures I can think of right now, involve food, but not all do. Birdsong is also a simple pleasure I enjoy. So was a shower I took on Thursday when I was feeling particularly miserable.

As a multiply-disabled person living in an institution, I sometimes find joy in things that are out of the ordinary for me even though these things are normal for most people in my country and the rest of the developed world. They are, however, luxurious to people in less fortunate parts of the world. I also realize I am privileged to be able to go online when I want, as even in some other developed countries, people in the care system can’t. That doesn’t mean my life is easy. It’s not. I may have it better than people in many parts of the world, but that doesn’t mean my struggle isn’t real.

However, I do try to find positives each day. It sometimes feels like an obligation, because I used to be told all the time that I’m being negative on purpose. However, it does genuinely help me to acknowledge the simple joys each day provides.

#WeekendCoffeeShare (July 5, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. I just had my last cup of coffee for the day and probably won’t finish this post before I have my evening soft drink, but I might be able to get my staff to prepare me a cup of green tea at around 9PM. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Oh my, has it been hot! On Tuesday and Wednesday, we had daytime temps of 36°C. The weather has been more bearable later in the week and tomorrow, we’re finally supposed to get rain. We were supposed to get a few thunderstorms on Thursday too, but thankfully not.

If we were having coffee, then I’d tell you that I did manage to meet my movement goal on my Apple Watch each day this week. Not by walking on those hot days, of course. That is, on Wednesday evening I did go for a short walk. On Tuesday, I stayed indoors all day and got my exercise by dancing. I did walk on every other day.

If we were having coffee, I’d share that I talked about exercise with the movement therapist on Wednesday. Next week, she’s going to come up with some exercises that I can do on my fitness mat.

If we were having coffee, then I’d tell you that my best friend and I went out for dinner yesterday at the Thai restaurant we took my parents to for my birthday two years ago. I had chicken with black pepper, garlic and vegetables and of course rice that was enough to feed a family of four. I loved the food, but I did feel pretty overloaded afterwards.

If we were having coffee, next I’d moan about my day schedule. It’s still frustratingly unclear. This got me to have an outburst on Wednesday, because of course it was too hot to go for a walk and the staff assigned to me couldn’t do dice games. It all boils down to the fact that I feel overwhelmed by all the activity options and then I end up doing nothing. I’m really unsure as to how to solve this issue and sometimes I feel like a nagger.

If we were having coffee, finally I’d tell you that, thankfully, I’m still able to appreciate the little things in life. Like the green tea I mentioned above. On Wednesday, I was talking to my best friend, who was having a cup of tea at the time, and this got me thinking that even though it was 9PM, no-one said I couldn’t at least ask for a cup of tea myself. I prefer plain green tea, so I went to the living room and asked the staff for a cup of green tea. She was okay with this, so the next day, when she worked again, I decided to ask her for green tea at 9PM again. I’m seeing this as a treat. Same with my extra cup of coffee this morning when I woke up. Of course, people living independently might take their tea or coffee at the time they wish for it for granted, but I don’t.

Today’s Accomplishments (June 20, 2025)

Posted on by Astrid

Hi everyone. I’m struggling with having a zillion vague ideas of what to write in my mind but not being able to get started on actually typing any of them down. This makes me feel like a failure as a writer. To counter this feeling (and to actually write something, anything…), I’m doing a list of things I did accomplish today. Here goes.

1. Did my morning ADLs. I actually needed to shower today, but had showered and washed my hair yesterday so I did a quick wash this morning. After all, I was still pretty tired when waking up. I’m content with this.

2. Went to physical therapy. I had what I might hope was my last dry needling session on my right leg. It hurt when I was being treated, but the pain has been manageable for most of the day. I probably have to thank paracetamol for that, as I now have to take that four times daily for an unrelated ache.

3. Went on two 1.8km walks. After the dry needling treatment, I’m not supposed to walk long distances for the first 24 hours, but this felt okay.

4. Experimented with seed bead stringing. I had ordered seed beads in four colors last week (the parcel I moaned about not having been delivered last week). I had also ordered a beading needle, which I expected to be sharp so I was saying that I probably needed to protect my fingers. Then again, if I do so, I can no longer feel where the needle is going. Turns out the beading needle isn’t sharp at all. And guess what? I actually succeeded at stringing the seed beads onto the wire. Granted, I haven’t tried even the most basic beading stitch yet, as I couldn’t follow the step-by-step instructions I found online and didn’t have the time to watch a video with my staff. I’ll give it a try soon though.

5. Brushed my teeth. This isn’t such a big achievement to most, but for a long while when in the psych hospital, I struggled with this. For this reason, I’m mentioning it anyway.

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.

Today’s Small Joys (June 1, 2025)

Posted on by Astrid

Hi all. Today is a mixed day emotionally. In the morning, I was quite tired and this frustrated me. At night, I also experienced frustration at the fact that, tomorrow morning, there’ll only be temp workers on this side of the home. We’ll see how it goes though and right now, I want to write and not just moan. So I’m joining Sunny Sunday and sharing this day’s small joys.

1. Doing my hair. I rarely do anything with my hair except for brushing it, but today I decided I wanted it in a ponytail. I have a dozen scrunchies and selected one that has a really velvety texture.

2. Perfume. I also decided to spray on some perfume. I rarely do this and wasn’t sure anyone other than me would notice, but my best friend did.

3. A white Kinder Bueno. Usually my best friend and I buy one to share when we’re at Hema, my best friend’s favorite store. We were there this afternoon, but only to have lunch. I said I wanted to pop into Aldi for some quark and my best friend apparently needed groceries too. It still surprised me that, when dropping me off at the institution, my best friend gave me the Kinder Bueno.

4. A pun on the word “quark”. For those not from Europe, quark is like thick yogurt (sometimes wrongly called cottage cheese). My friend though found another meaning, some type of physics term, and kept asking me whether I wanted “hadron-yogurt”. This is something I truly love about our friendship: the tons of inside jokes that no-one else understands.

5. A large stroopwafel (cookie) with my evening coffee. According to my foo plan, I only get those on Fridays and Saturdays, so it was great having a treat.

6. Lovely comments from my readers. I am so glad I don’t rely on search engines like Google (thank you not, AI) to drive traffic to my blog. I do really hope blogging will withstand the influx of AI.

7. Speaking of AI, having some more creative ideas thanks to a ChatGPT convo I had several months ago and was reminded of today. Specifically, I had ChatGPT create a Premo polymer clay color recipe for the color of my best friend’s car and was reminded of this when a person in a Facebook group asked for Premo color recipes. There are plenty on Etsy, but in that group, we aren’t allowed to mention vendors. Another commenter said a lot of it is experimenting. I am now wanting to start experimenting with colors. I know the result will likely be poor because of my blindness, but I love the creative flow this idea gets me into.

Resilience and Post-Traumatic Growth #AtoZChallenge

Posted on by Astrid

Hi everyone. For my letter R post in the #AtoZChallenge, I want to talk about resilience. Resilience, basically, is the ability to bounce back when faced with challenges. It is also linked to post-traumatic growth.

First, what characteristics and attitudes make someone resilient? These include optimism, the ability to regulate your emotions, and the ability to see failure as helpful feedback rather than wallowing in self-blame.

Several factors contribute to resilience. Some of these are most likely genetic. Early life experiences play a role too. However, that doesn’t mean that resilience can’t be learned to some extent. For example, you can learn to break out of negative thought patterns, to regulate your emotions, to look for positives during a setback and to see failure as a learning opportunity.

Some people believe that experiencing a traumatic event, makes you less resilient. This isn’t necessarily true though. This is where post-traumatic growth comes in.

Post-traumatic growth is the experience that survivors of trauma are able to develop in a positive way after the traumatic event. For example, they recognize their inner strength for having overcome their trauma, form stronger connections with loved ones as well as other survivors, and find new opportunities for finding meaning in life.

The reason post-traumatic growth happens, is the fact that traumas force a victim to re-evaluate their sense of self and their stance in the world.

Not everyone who experienced trauma, will experience post-traumatic growth, but about half to two-thirds will. Again, whether you will experience post-traumatic growth, is related to how resilient you are in general.

So how do you learn to cultivate resilience? You can learn to reframe challenges as opportunities and, as a result, look at the benefits of stress. After all, viewing stress as solely negative, may lead to an additional stressor, ie. “stress about stress”.

Other ways of cultivating a positive outlook on life, such as practising gratitude and self-care, can help too.