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.

#WeekendCoffeeShare (September 27, 2025)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare for the first time in over a month. It’s nearly 10PM as I start typing this, so no more coffee for me. I did have a mug of green tea about half an hour ago, but for now it’s just water. Feel free to grab yourself a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Not that I’ve experienced much of it, as I spent most of the week indoors with what I believe to be COVID. The daytime highs most days have been around 17°C and we didn’t get much rain.

If we were having coffee, then I’d share that I paused my activity rings on my Apple Watch because I was too obsessively trying to meet my goals while being sick. I originally intended to restart them yesterday, but for now they’re on pause until this coming Tuesday.

If we were having coffee, then I’d tell you that, today, I finally feel like I might be on the mend. Being me, I did immediately go for a 30-minute walk. My average heartrate was 140BPM, which is high even for me. Let’s hope I won’t be exhausted tomorrow.

If we were having coffee, then I’d share that my spouse finally visited me today. We hadn’t seen each other in a few weeks even though it was our wedding anniversary on the 19th. Then though, I was sick with that could-be COVID thing. Today, we still didn’t do a lot. We went to a nearby pancake place to have lunch.

If we were having coffee, I’d tell you that, on Wednesday, the Center for Consultation and Expertise consultant came by. Like I said on Tuesday, I was only informed a day in advance and the consultant gave as little information about herself as she could (ie. just a first name). I feel incredibly distrustful of the entire process because of this. One of my assigned staff, the student, attended the meeting with me and it was more her telling the consultant what she thinks could be improved about my situation than me. I honestly fear this whole consultation is going to be a waste of time and money, as if the staff already know what I need (which, frankly, they don’t), why involve an independent consultant?

If we were having coffee, lastly I’d share that the student who’s my assigned staff, is leaving on Monday. She’s going to work at the intensive support home I used to live at and I’m struggling not to use that against her. I did, with some difficulty, create a necklace for her, which I’m going to give her when she has her last shift here.

The Could-Be COVID Chronicles, September 2025 Edition

Posted on by Astrid

Hi everyone. It’s been over a week since I last wrote a post for my blog. I’ve had some ideas on my mind, but I’ve been battling what I believe could be COVID since Wednesday. Here in the Netherlands, all official precautions and regulations were ended in early 2023 and replaced with a recommendation to “use common sense”. Now my institution has always been rather careless when it comes to quarantining people suspected of having COVID and I myself am not the most sensible either when there are no rules.

On Wednesday, in fact, I was cooking burgers for the entire home when this whole thing started. I blame myself for several other clients and half the staff being sick now, but the staff say they would probably have caught it somewhere anyway, just like I probably caught it from a staff coming to work sick on Monday last week.

On Thursday, I was in bed all day, but I felt better on Friday, so I decided to go for several walks and a dance. Not a good idea if I indeed do have COVID, as not resting well enough can contribute to having long-term symptoms.

Saturday, I was in bed again for most of the day but dancing at 11PM in my room again in order to meet my movement goal on my Apple Watch. I then decided I really had to rest, so lowered my movement goal for that day and paused my rings altogether on Sunday until tomorrow.

I’m now feeling okay, but not nearly back to normal. Tomorrow, the Center for Consultation and Expertise consultant is coming. There are no longer any rules prohibiting them to visit me and several other staff are working while having symptoms now too. Besides, I didn’t have a say in inviting them, so I don’t feel in a position to cancel.

I do feel guilty for basically doing what everyone else is here, ie. living my life as if COVID is no longer a threat. I know, I don’t know whether I actually have COVID since testing is no longer a thing here either, but I definitely feel this is more than just a very nasty cold.

#WeekendCoffeeShare (August 15, 2025)

Posted on by Astrid

Hi everyone on this warm Friday evening. I’m joining #WeekendCoffeeShare. I usually do mine on Saturday, but I’m motivated to write now so let’s make use of it. I just had my evening soft drink and a single-serving bag of chips. I’d recommend you’d grab something to drink if you were here. Let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been hot all week. In fact, I’m pretty sure we have a local heatwave, meaning five days in a row of daytime temps above 25°C, of which three with daytime temps of 30°C or above. I haven’t checked the news in months and don’t want to check it now, but I don’t think it’s a national heatwave.

If we were having coffee, then I’d share that, thanks to the nice weather, I was able to eat outside three or four times this past week. Did I share my spouse gifted me a new outside table, because I’d broken the one I’d gotten last year? My spouse had ordered it online and had had it delivered to the institution. We hadn’t seen each other since, so yesterday after a lot of pestering, I decided to snap a picture. I rarely take pictures fully independently, so if this one’s unclear, I apologize.

If we were having coffee, then I’d tell you I’m still going strong with my movement and exercise goals on my Apple Watch. On Saturday, I did in fact break my active calorie record. Yesterday, I broke a record with the longest bike ride. My Apple Watch also said I burned the most calories during a cycling workout, but I doubt that’s true.

If we were having coffee, next I’d announce my participation in the Walk on Sunshine on October 4. It’s a walk to raise money for the Dutch cerebral palsy charity CPNederland. The goal is to walk at sunrise. Sunrise is at 7:45AM that day and the staff usually don’t get here until 7:30, but one of the staff agreed to come here early and do the walk with me. I signed up for the 5km walk, because that’s a challenge for me particularly in the morning, but not impossible.

If we were having coffee, lastly I’d tell you all that I’m still struggling. I experience a ton of trust issues towards my staff and am not sure these are entirely unfounded. Like, today my spouse and I were on the phone during my entire late afternoon activity and, though it was nice to talk to my spouse, I worried that the staff are going to cut my care hours because of it. After all, for some time they tried to make my spouse visit me each Sunday so that they could cut my hours.

Honestly, I think I’d be much more independent if I knew that, when I have a bad day or a bad moment, I can always get some extra support. In this sense, my psychologist back in the mental hospital was right that anxiety is part of the reason for my dependence. However, her subsequent actions to “treat” me, ie. kicking me out of the hospital into independent living with minimal support, actually worsened my situation. So did my staff’s decision back last year about my having to compensate for every moment I needed extra support due to distress. These and other strategies, while intended to encourage self-reliance, actually achieved the very opposite. After all, my abilities fluctuate and my mental state doesn’t adhere to a day schedule, so that I’m only in distress when I have one-on-one. No, I don’t purposefully work myself up in order to get more support, but my mistrust of my staff’s continued actual support does lead to distress.

#WeekendCoffeeShare (August 9, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM, so I just had my last cup (two cups, in fact) of coffee for the day. I’ll probably take a break from writing this blog post for my soft drink at 8PM. Please join me as we chat.

If we were having coffee, first as usual I’d talk about the weather. It’s truly beautiful! Today, the temperature rose to 25°C and it was quite sunny. Rain isn’t in the forecast until next Thursday I believe. I know, climate change and all, but I’m enjoying the summer while I can.

If we were having coffee, I’d share that I am still going strong with my physical activity goals. Yesterday, a staff mentioned the trampoline that’s on the campsite near the institution and we decided to check it out. Today, I went on the side-by-side bike with another staff. Because of this as well as having walked a lot today, I might break my active calories record according to my Apple Watch.

If we were having coffee, next I’d tell you that I unfortunately haven’t been crafting much lately. On Sunday, I created polymer clay earrings that are still waiting to go into the oven. Other than that, no crafty endeavors.

I did, however, create a dessert for myself and my fellow residents on Monday. It was good.

If we were having coffee, then I’d tell you that the rest of the week was quite hard. There’s this temp worker who is absolutely clueless about how to support me and yet he’s assigned to me almost everyday. Staff keep saying I should be giving him feedback more when he’s acting in an unsupportive way. First of all, well, no, that’s not my responsibility. They don’t ask the other clients to give feedback either, but when I point this out, they say it’s different for them because they can’t. I can, sometimes, a little bit and I tried this week in fact, but the temp worker didn’t learn a thing from it. Then I get told that the staff assign to me who they choose and it’s my responsibility to deal with it.

I also was told that, when the staff feel someone is trained well enough to support me, they will be assigned to me and I don’t have a say in it. All this comes across as if it’s me being deliberately difficult with certain staff based on arbitrary things, while in reality it’s the way that they act that makes certain staff more difficult for me to deal with than others. Besides, I’ve had staff assigned to me who themselves don’t even feel they’re capable enough just because these staff want to please and their colleagues pressure them. It may be easiest for staff to assign the most inexperienced temp worker to me because I try to be helpful and, when I am not, it is easy to blame me for allegedly playing favorites.

If we were having coffee, lastly I’d share that the Center for Consultation and Expertise found a suitable consultant for my case, but due to the summer holidays, the first contact won’t be until the end of August. This will unfortunately be a phone call with the behavior specialist. I’m not very trusting of the whole process at the moment, to be honest.

#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.

#WeekendCoffeeShare (June 21, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare this evening. It’s 5:40PM as I type this. I’d advise you to drink lots of water today, as it’s hot outside, but if you’d like a coffee, I’ll gladly serve you one. I also just heard that one of the staff ordered a dozen bottles of diet coke (and I mean the 1.5l bottles, not single-serving bottles), so if you’d like a coke, that’s okay too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. Did I say it’s hot? Yes, I did. The daytime high today was 30°C. That plus lots of sunshine and poor air quality means I may go outside for a bit at 9PM or so, but not now. The rest of the week, the daytime temps have been lower, but I’ve been able to wear short sleeves each day.

Tomorrow is supposed to be another hot day here in the eastern part of the country, but after that, we’re getting some rain and lower temps (though still above 20°C). I’m already looking at the weather forecast for next Saturday, as then my sister and her family will be visiting me for my birthday. Let’s hope it won’t be too hot, as then my sister and her kids will most likely be cranky.

If we were having coffee, next I’d share that I did meet my movement goal on my Apple Watch each day this week again. That is, each day except for today so far, but I’m pretty sure I’ll meet it today too despite only one walk.

If we were having coffee, then I’d tell you that a staff handed me some shorts, shirts and a few other clothing items that she no longer wears. We did have to throw a few things away that I suspected would be worn out soon or damaged in the washing machine. Overall though, I’m very happy with everything she gave me.

If we were having coffee, I’d also tell you that I fell last Sunday. I had just finished a polymer clay project and was walking out of the bathroom after having washed my hands when I stumbled over an open drawer of my nightstand and fell. I apparently fell backwards, hitting my head quite hard on the floor. The staff said I was responsive right away, though I have a small memory gap. After a while, I got a major headache and my neck also started hurting.

My father broke his neck when he was young and didn’t find out until several days later. This thought crept up on me constantly and, not knowing that if I had broken or seriously damaged my neck, I would’ve felt severe pain right away not a while later, I felt quite anxious. My staff wasn’t able to reassure me either. Thankfully, my GP’s nurse practitioner, who came by on Friday to check on me, was. I now am to take paracetamol four times daily for the next few days to lessen the pain, in hopes that I’ll move my neck more and it won’t stay stiff. I’m glad my anxiety is also less, because that too was keeping me from moving my head.

If we were having coffee, lastly I’d share that, though I have a zillion ideas for what to do in the crafting, physical activity and writing departments, none of these seem to materialize. This frustrates me to no end. I really hope there’s a way for me to get some more structure in my activities without it becoming too compulsive.

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.

#WeekendCoffeeShare (June 7, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare. It’s past 10:30PM, so I should really be in bed and I certainly shouldn’t be drinking coffee. Then again, this is a virtual get-together, so I’ll gladly pass you a virtual cup of your favorite beverage. Let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been quite unpredictable but mostly chillier than I’d like and also rainier. At the end of last week (I believe) I was even awoken by a thunderstorm in the middle of the night. And if you know me well enough, you’ll know that I hate thunderstorms.

If we were having coffee, then I’d tell you that, thankfully, it wasn’t raining on any of the evenings we did the walking event I mentioned last week. That is, not during our walks at least. I’m also proud to say that I completed the event and earned a medal. I’ve always been surprised at the fact that participants in the big Nijmegen four-day walking event only earn an actual medal every five years. Of course, I can probably guess the reason: the medals we get are cheap and not something a neurotypical adult would appreciate. As such, participants in the Nijmegen thing are as happy with a simple mark of completion as I am with the medal. We also got free ice cream at the end of the event (well, those who’d actually completed the event and earned all their checkmarks). I chose whipped cream-flavored ice cream.

Did I mention that originally, my staff had agreed with me that I’d use a wheelchair as needed during the event? That wasn’t an option according to the staff accompanying me. I sort of understood, but was annoyed at the lack of clear communication. Thankfully, I was able to complete the event on foot.

If we were having coffee, then I’d share that I had two physical therapy sessions this week. One was on Wednesday and it was originally intended for another dry needling session. However, because of the walk that evening, we decided to do the dry needling on Friday and for the physical therapist to just loosen up my leg a bit.

On Friday, I had my second dry needling session and it hurt like crazy. Afterwards, I got a bit dizzy. However, it’s now nearly 36 hours after the treatment and at least for now the pain is less than it was last week. I’m also hopeful that this will actually in a few days turn out to have significantly lessened my leg pain.

If we were having coffee, then I’d share that I haven’t been very crafty over the past week. On Monday, I created a polymer clay bear using a new-to-me skill: filling it up with tinfoil. The foil needs to be crumpled very tightly to prevent air bubbles forming in it and there’s also the risk of air bubbles getting trapped between the clay and the foil. Air bubbles will expand and can cause the layer of clay to crack. This happened with the bear too, but still, I’m pretty content with the result.

If we were having coffee, I’d say that I did enjoy thinking up new ideas for creations. I badly want to craft a standing unicorn someday, but it needs a wire armature. I had been reading up more on sculpting with clay, but my book doesn’t include a unicorn or horse (it’s a book about creating animals). So what did I do? I asked ChatGPT. It came up with what sounds like a pretty doable tutorial. I did have a few questions that I asked in a polymer clay group on Facebook. I still need to figure some things out, but I’m confident I will be able to create a wire armature someday and as a result craft a standing unicorn. I already got one of the student staff here quite excited for helping me make it.

#WeekendCoffeeShare (May 31, 2025)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. I originally wanted to write another post first, but got distracted by a dozen other ideas. It’s 9PM here, so no more coffee for me. I need to drink plenty of water because I have some extra fluid in my right leg. Let’s have a glass of water and let’s chat. Or if you’d like coffee, fine by me too.

If we were having coffee, first I’d talk about the weather. For most of the week, it’s been quite rainy and too chilly for my liking, even though the daytime temperature was probably still higher than it should be. Today though, we have sunshine and a daytime high of 25°C.

If we were having coffee, then I’d share that I haven’t been as physically active as I’d have wanted to be. Like I said above, I have some unwanted fluid in my right leg. My leg also hurts from muscle knots. I had a dry needling treatment at the physical therapist’s on Tuesday and am having another one next Wednesday. I am not 100% sure it’s working, as on Thursday my pain was worse and besides, I don’t know which pain or limitation is from the muscle knots and which is from the fluid build-up.

Today was a good day in the walking department though. Next week is the institution’s four-day walking event. I’m going to take part in the 3km walk, but I’ll be allowed to sit in a wheelchair as needed (thankfully, this event isn’t as strict on walking as some others are). That way, I can take part in the festivities and enjoy the experience but don’t need to overexert myself.

If we were having coffee, then I’d tell you about my creative endeavors over the past week. I finished two unicorns for the home’s volunteers on Monday.

That day, I also found out that one of the student staff would be leaving. He didn’t work with me, but I know him because he used to be a student staff at the care facility in Raalte before coming here. Back then, we used to go on walks together, taking his camera with us and snapping pictures which my image description app could then describe. The app wasn’t nearly as advanced as it is now, so I might want to look up some of these pictures and run them through Be My Eyes now.

Anyway, I wanted to craft something for him but didn’t know what until my best friend asked me what his hobbies are. I initially said that I don’t know, then remembered our photographing adventures back in Raalte and said “photography”. My best friend immediately suggested I craft a camera. I had never done so, but my best friend gave me some suggestions. Here’s the result. Be My Eyes recognized it immediately and even said that the photo of the back I took might be of a miniature camera.


If we were having coffee, then I’d share that I cooked pasta for my fellow residents on Thursday. It wasn’t as good as it could’ve been, because the veg had been overcooked and generally speaking the meal was a bit bland. Better luck next time.

If we were having coffee, lastly I’d share that yesterday, on the student staff’s last shift, I played DJ again at the other side of the home. I initially played some Dutch-language songs that were apparently not well-known, but finally I chose “Oerend hard” by Normaal and that had my fellow residents loudly singing along.

Overall, this week was a good one except for the pain.