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.

Gratitude List (August 24, 2025) #TToT

Posted on by Astrid

Hi everyone. It’s been a while since I last joined Ten Things of Thankful (#TToT), but today, I feel like it. Here are my gratefuls for the past week.

1. Baking a cake. Earlier this week, I decided to use up the second of three cake mixes I’d gotten from my parents for my birthday. It was raspberry cake. Unfortunately, I found out today that the third mix had an expiration date in April, so I threw it away. Now I do think the other mixes probably had their expiration dates at the same time, as they came in one package, but oh well.

2. A long bike ride. On Wednesday, the staff and I rode the side-by-side bike to the nearby town to get groceries, only for me to realize then that I didn’t know what groceries I’d wanted to buy, so we decided to just bike around. It turned out I’ve broken my record for the longest bike ride at 19.3km.

3. The night staff. I’ve been needing their support a few times lately and often feel like a burden. The night staff used to make that feeling worse by telling me to “just try to sleep”. Thankfully, recently they’re telling me that I am not a burden and they’re there for me as much as they are there for everyone else. Even if they don’t fully mean this, it helps me feel more comfortable.

4. The staff having cooked chicken and noodles for us on Wednesday.

5. An institution cafeteria sandwich on Thursday.

6. Green tea. Always, green tea. I’ve been requesting it in the evening more often lately and that’s been feeling good.

7. My having been allowed to play DJ again with the home’s large Bluetooth speaker. I mostly played ABBA songs, but did one MARINA song too, realizing only when it’d started that it was rather explicit. Oh well, most of the residents don’t know English and the few who do, just chuckled at it.

8. Mini candy bars. A fellow resident’s parents brought them yesterday and they are yum! I only found out that they were from Aldi today. If I’d known earlier, I’d have asked my spouse to drive by there on the way from Apeldoorn to the institution so that I could pick up a bag myself.

9. Diarium, a diary app. Recently, there was a discussion on Reddit about journaling and I decided to give this app, which is available on both Windows and iOS, another try. It has a lot fewer features than Day One, but Day One’s web-based interface (there’s no PC app) honestly sucks.

10. The weather. We’ve been having lower temps this week than last week and I’ve had to wear my jeans again and even put on a jacket some of the time. Still, it’s been warm and sunny enough.

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 (August 2, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s almost 10:30PM, so no more drinks other than water for me. That green tea I got a month ago has gotten a meaning of its own lately, symbolizing my lack of independence and self-determination. But I’m getting ahead of myself. Grab yourself a favorite drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been rainy most of the week and honestly less warm than I’d like it to be. I refuse to wear long-sleeved shirts in the middle of summer, but today, I almost regretted going out in just a T-shirt.

If we were having coffee, I’d tell you that in part due to the weather, I haven’t been as physically active as I’d have liked lately. Today, my spouse and I wanted to go for a walk but it was raining pretty hard so we turned around within five minutes. That was when I was out in just a shirt. I’m hoping I can still meet my movement goal on my Apple Watch today.

If we were having coffee, then I’d share that I was at our house today. My spouse got a new cat about six weeks ago and I hadn’t met him yet. His name is Caleb. Unfortunately, he hid under our bed as soon as I walked in the door and had to be dragged down by my spouse for me to be able to pet him.

We originally intended to cook dinner together or get pizza delivered, but since the weather didn’t permit us taking a walk and my spouse didn’t want to stay inside the house all day, we decided to drive to Apeldoorn. I needed a new jacket, after all. My old one, I’d bought seven years ago and it’d finally gotten damaged beyond repair in addition to being quite dirty. When my spouse asked me my size, I made a guess. It turned out the old jacket was several sizes bigger. Then again, back in 2018 I was at least 10kg heavier than I am now. I finally got a jacket with a size inbetween my original guess and the old one’s and it fits perfectly.

If we were having coffee, then I’d tell you that, as of yesterday, I’m once again a tiny step down with my medication. Specifically, I’m now on the absolute lowest dose of pregabalin. I was never on a high dose anyway, in fact having been on my start dose for years, but as it is in medicine, apparently going up is easier than going down. Six weeks from now, I’ll most likely be completely off of pregabalin.

If we were having coffee, then I’d share I’m still struggling. Part of it is the realization that my life is far from “normal” and the fact that I feel guilty about not accepting this reality. I constantly have my last home’s staff’s words in my head about never having a perfect day. I am also constantly thinking of ways in which my life could be even a tiny bit more meaningful.

If we were having coffee, finally I’d share that I did have some good moments over the past week. Like I said on Thursday, I have been quite active in the kitchen. I also on Thursday crafted another clay parrot.

The staff who’s leaving, took this one and the one we made last week home with her yesterday.

Tomorrow, one of my assigned staff is going to do my morning activity with me and we agreed to work with clay again. I have yet to think of some ideas for what to make. She wanted an elephant, but I’m not yet sure how to go about doing that.

#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.

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.

The Wednesday HodgePodge (December 20, 2023)

Posted on by Astrid

Hi everyone. Another Wednesday, yay! I’m joining in with the Wednesday HodgePodge. Here goes.

1. Did you do more talking or more listening yesterday? Was it by choice or by necessity?
Talking. Honestly, even though I’m an introvert, I talk more than I listen generally. Maybe that technically makes me an ambivert, who knows?

2. Are you a tea drinker? Hot, cold, or both? Flavored? What do you like in your tea? Do you make Christmas tea this time of year? What time of day do you like to sip your tea?
I’m more of a coffee lover but I do drink tea occasionally. Usually hot. I mostly drink plain green tea, although I like some flavored green teas too, like coconut or cranberry. Nothing in my tea please. I’ve never made Christmas teas and have no idea what makes a tea specifically a Christmas tea. I usually drink my tea in the afternoon or evening.

3. What’s an activity you won’t try, an event you won’t attend, or an athletic challenge you won’t take part in not even for “all the tea in China”?
Marathon running. That is, most likely I will never run more than 100m at all and that can barely be considered running.

4. What’s something most people seem to love but is not “your cup of tea”?
Starbucks. And yes, I thought of that before I’d read Joyce’s answer. Like I said before, I went there twice and thought I sort of liked it the first time (because everyone apparently does). The second time though, both I and my spouse decided we definitely weren’t coming back.

Oh and romance novels. I am not sure whether I haven’t found the right kind yet but I think they’re all horribly cheesy, shallow and predictable, and it’s not like I need lots of twists in a book otherwise.

5. How does your family celebrate New Year’s Eve?
Uhm, we don’t? That is, as far as I know my spouse isn’t expecting me to come to our house for the occasion. Last year, though I did spend New Year’s Eve in Lobith, we went to bed before midnight.

6. Insert your own random thought here.
I want to share some good news: my one-on-one got renewed! I don’t know any details yet, but according to my staff everything will stay the same with respect to my care.

#WeekendCoffeeShare (February 18, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s 5:35PM as I start writing this post. I probably won’t finish it until past seven, when I’ll have my last cup of coffee for the day. Care to join me? We also have pure green tea (so the kind without flavoring). We also probably have lemon-flavored green tea, but I don’t care for that. I did discover a new kind of green tea, Indian chai green, which I do love. It is loose-leaf tea, which I rarely have, but I think this one is quite good. I can brew you a cup of this too. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d ask about your weather, as I usually do. Ours has been mixed. Early in the week, we got some sunshine, but later, it’s been rainy. The daytime temperature usually rose to about 12°C.

If we were having coffee, I’d tell you that my mother-in-law, my assigned staff and my support coordinator were supposed to have a talk on Tuesday. I wasn’t invited and the goal of the meeting remained unclear to my mother-in-law until the last moment. Then, it was canceled because my support coordinator was off sick. My mother-in-law took the opportunity to make it clear that, if it’s up to me and her, the possibility of me moving out of this care home should be a serious topic of discussion at a rescheduled meeting. She also pointed out that she’d like the behavior specialist present. This meeting, all going well, has now been set for March 2. I’m not sure whether I’ll be allowed to attend too. I think I should, honestly.

If we were having coffee, I’d share that, instead of coming to the meeting, my mother-in-law paid me an extended visit. We drove to Apeldoorn, like we seem to do regularly, and had lunch. Then we went into several shops to buy some little presents for one of my mother-in-law’s coworkers at her volunteer job, who will be going into hospital soon. It was there that I discovered the Indian chai green tea. We also went into a supermarket so that I could buy rolled oats, raw nuts and some other things. I fully intended to make overnight oats with those rolled oats. I did try, but either used too much milk or did something else wrong, because there was a lot of milk that hadn’t been absorbed by the rolled oats.

If we were having coffee, I would share that I did end up crafting a Valentine’s Day present for my husband after all. It’s a polymer clay heart with an arrow in Premo cadmium red with a Fimo Effect metallic gold edge and the arrow is done in Premo white. I textured the back using a ball of tinfoil, which turned out rather ugly – uglier than it would’ve been with visible air bubbles, which texturing aims to prevent. Oh well, that means I learned something.

If we were having coffee, I’d tell you that I weighed myself on Thursday, as I do each week, and I lost another 0.6kg. I have only 2kg to lose to be at a healthy BMI. I am still slightly worried that some physical health condition is causing me to lose weight, because to be honest I’m not minding my diet much at all and I’m not exercising excessively either. However, I did notice that my Apple Watch estimates my cardio fitness level has increased. It’s still “low”, as it’s always been, but is slowly creeping towards “below-average”.

If we were having coffee, lastly I’d share that I didn’t walk as much as I’d have liked over the past week. I signed up for a challenge with other Apple Watch users in an app called Challenges. The challenge ran from Monday through Friday. I started out doing quite well on Monday, starting with a walk to visit the institution’s petting zoo, which is about a 45-minute walk total. My feet hurt terribly after it. During the rest of the week, I didn’t do so well. I ended up 48th out of 88, which I’m okay with all things considered. I’d have liked to be in the top half.

By the way, while at the petting zoo, I took a picture of the goats. I didn’t get to actually pet them.

How have you been?

Gratitude List (October 14, 2022) #TToT

Posted on by Astrid

Hi everyone. I’m still struggling a little, but this means it’s all the more important I look at the positives of my life. For this reason, I’m joining in with Ten Things of Thankful for a gratitude list. Here goes.

1. I am grateful my support coordinator is back in the home today after several weeks of being either off work or busy with out-of-the-home duties.

2. I am grateful the staff whom I had a huge issue with last week – the details of which I won’t disclose on the blog -, hasn’t been working here since.

3. I am grateful my support coordinator offered to sit with me and said staff to talk things over so that I can let them go. We aren’t yet sure when this can take place.

4. I am grateful I found out an oven/microwave combo works for polymer clay after all, provided you set it to its oven setting. This means I will most likely be able to use my home’s oven for polymer clay.

5. I am grateful for a nice visit from my mother-in-law on Tuesday. I am also grateful I was able to walk for an hour during said visit.

6. I am grateful for green tea without any additional flavors. That’s my favorite tea, or maybe really it’s the only tea I’ll drink. I am grateful the staff ordered it.

7. I am grateful for relatively nice weather. It’s been raining a bit over the past few days, but not all day, so I have been able to take walks every single day this week.

8. I am grateful for some distraction in the form of a few games of mau-mau, a card game, with my one-on-one. I was even able to teach one of my staff the game and he beat me to it.

9. I am grateful I tried penne carbonara on Tuesday, since it turned out I actually sort of like it.

10. I am grateful I usually get along with all my fellow residents here at the home. Of course, we all have our issues and it’s an intensive support (ie. behavior) home for a reason, but for the most part they’re nice people.

What are you grateful for?

#WeekendCoffeeShare (June 4, 2022)

Posted on by Astrid

Hi everyone on this warm but windy Saturday afternoon. It’s been a while since I joined #WeekendCoffeeShare, so I thought I’d participate once again. I’ve just had my afternoon coffee, but the other clients are still having theirs, so grab a cuppa if you want. I also have a delicious loose-leaf herbal tea that I swapped with my assigned staff for the lemon and mint flavored green tea that came in a box I’d acquired back in February when I had COVID. After all, back then the staff had taken the entire box to my room and only then realized that because of the risk of contamination, she couldn’t take it back to the kitchen. It contained four varieties of green tea: plain, lemon, orange and mint. I like plain and sometimes orange only, so now that I trust the box isn’t laden with viruses anymore, I gave the other two varieties to my staff. Anyway, the herbal tea contains cinnamon, lavender and I don’t know what else, but it’s truly lovely. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week was rather intense emotionally. On Monday, we welcomed a new resident to my care home. She’s quiet and doesn’t seem to need a lot of care, but the fact that she can walk independently and yet does have a profound intellectual disability, does create some of its own risks.

The door to the home now needs to be locked for her safety. She can’t work keys, so the key remains in the lock during the day for me to open it. (At night, it’s been out for years already for my safety.) This does create some inner turmoil in me, both because of the lack of clarity (either the door is locked or it is not, in my mind) and because of my feelings about the presumption of competence for me. I mean, I am an elopement risk too and some recent events in which I’ve been quite a possible danger to myself while running away, do make me feel weird. On the other hand, I really don’t want to go back to my time on the locked psych unit.

If we were having coffee, I would also share that, on Wednesday, my assigned home staff captured one of my child alters on video while playing with one of the new resident’s sensory toys. She later asked my permission to forward the video to the other staff and the behavior specialist. I at first said yes, then felt a little anxious but eventually decided to give my permission after all.

If we were having coffee, I’d tell you that I did finish all the presents for my sister and nieces on time for my visit to the family tomorrow. Besides the earrings I created for my sister and the mobile for little Wolke (that’s the baby’s name), I created a polymer clay bear for Janneke, my older niece.

Deciding when exactly we wanted to visit, was a bit of a hassle, since I’d forgotten my sister and her children of course need to sleep during the afternoon and I had more or less filled in for my husband that a morning visit wouldn’t be possible because of the long drive. Finally though, we agreed that we’d be at my sister’s by 11AM tomorrow and have lunch there. My husband insisted on picking me up here in Raalte tomorrow. Now that I think of it, I realize that it makes perfect sense, since he, unlike me, is a morning person. Oh well.

If we were having coffee, I would share that I went clothes shopping this morning with my staff. I bought three pants and two shirts and immediately wanted to put most of my old pants in a bag for the charity shop, because they’re way too wide. I didn’t in the end though, because I want to give it some more thought.

If we were having coffee, lastly I’d report that I’m now under 69kg, yay! I have now lost exactly 3kg since starting my healthier living journey back in January. Of course, that’s not much, but it’s better to go slow and keep losing than to go fast and then gain all the weight back because you’re tired of the healthy lifestyle after a while.

How have you been?