#WeekendCoffeeShare (December 6, 2025)

Posted on by Astrid

Hi everyone. Yesterday, I had tons of ideas on my mind on what to blog about but no motivation to actually write. Today, it’s the opposite. I’m joining in with #WeekendCoffeeShare even though I think I don’t have a lot to share today. I, as usual, had my last cup of coffee for the day about half an hour ago and am going to take a break from writing this post to have my soft drink and chips. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, it was chilly but not rainy with daytime temps around 7°C. Today, the daytime high was 10°C but it’s been raining all day.

If we were having coffee, I’d tell you that I was pretty active for most of the week, both by walking and one time by cycling to the next town just to have a purpose for cycling. I didn’t need any groceries and we only ended up having a snack, but at least we weren’t aimlessly cycling around.

Today though, I spent the entire day indoors and still need to dance or whatever to reach my movement goal on my Apple Watch. My streak for whatever reason is still stuck on 33 days even though I’m moving each day and it’s been stuck on 33 days for a month or so.

If we were having coffee, then I’d tell you that I had many plans over the past week but haven’t accomplished a lot. On Monday and Tuesday, I did create some Christmas decorations out of polymer clay. Yesterday, I attempted to bake cookies. They turned out okay but not great and the process was frustrating. Nonetheless, it was better than lying in bed or staring into space, which is what I’ve been doing a lot lately.

If we were having coffee, I’d cheat a little with the coffee share being about the past week, since there was none last week. I’d share about the meeting I had with the behavior specialist early last week. It went well. First of all, like I said, the “one chance” rule about orienting new staff got ditched. My assigned staff, who is in training to become my side of the home’s support coordinator now too, E-mailed me the new orienting plan yesterday and it looks pretty good.

We also discussed my day schedule. In the future, I’ll hopefully get more set activities. In preparation for this, my assigned staff created instruction cards for some of my activities, so that I can hopefully do more activities regardless of which staff is assigned to me. She E-mailed these to me too and I gave some feedback.

If we were having coffee, lastly I’d share that I’ve been having lots of memories lately. And by “memories” I don’t mean good ones. Yesterday, for example, I remembered the team meeting for my current home I attended in the summer of 2023. One of the staff, when I told them that I can’t prepare my own lunch, replied: “But you lived independently, right?”. I immediately got defensive, because yes, I technically lived independently, but I shouldn’t have. Yesterday when I was talking about this with my wife, whom I’d first met when living on my own in 2007, she told me more about how bad it actually was. Until a few years ago, I believed that, while I couldn’t cope, this was mostly a mental thing. In other words, I was falling apart mentally but could really care for myself if I hadn’t been so scared. Well, no.

It is sad to realize that part of the reason why I need so much care is lack of training in childhood, adolescence and to a lesser degree early adulthood. I’m still struggling with my parents’ reasoning that they couldn’t have taught me because I was too strong-willed and just didn’t want to learn. It may’ve been true that I didn’t understand why I had to learn something that caused me frustration, but then isn’t it the parents’ job to guide the child through their frustration? I’m honestly still struggling with this.

Consciously Incompetent This Time

Posted on by Astrid

Over the past few weeks, I’ve been attempting several times to create a polymer clay trinket dish, with no luck. The first time, when I’d finally rolled the slab to the right thickness, it was too small for my trinket dish cutter; the second time, I couldn’t even get the clay to the right thickness without it being horribly uneven; and yesterday, when I actually got the slab to the right thickness and size for the cutter, it turned out that the bowl I used for molding my trinket dish into, was too big.

Several years ago, I’d have been content with my second slab and might’ve used it as a coaster if I hadn’t molded it regardless of the size of the bowl.

I am often reminded of the fact that, according to one of my college instructors, people start at unconsciously incompetent at a new skill, ie. overestimating their abilities, then move on to the stage of conscious incompetence, at which point I believe I’m now with some of my polymer clay, like with the trinket dish. It’s an incredibly frustrating stage to be at, because I constantly give up on projects that I want to pursue because of realizing they’re going to be a massive fail.

At least though, I try to remind myself that I’m not as clueless as I was with card making many years ago, because then I’d happily send out cards a five-year-old could’ve made in exchange for cards by semi-professional card makers.

This post was written for the Six Sentence Story blog hop, for which the prompt this week is “card”.

#WeekendCoffeeShare (March 1, 2025)

Posted on by Astrid

Hi everyone on this first day of March. I’m joining #WeekendCoffeeShare again. I’ve just had my last cup of coffee for the day, but if you’re quick, you may be able to enjoy a soft drink. We usually get chips with our soft drinks on weekends, but if I’m correct, the staff ordered meatballs. Let’s have a drink (and a snack) and let’s catch up.

If we were having coffee, first I’d talk about the weather. Most days, it was chilly but not rainy. We got the most rain on Thursday, but even then I managed to go out.

If we were having coffee, then I’d tell you that I did achieve the perfect month on my Apple Watch in February. My March challenge is incredibly easy: get in at least 3.63km of walking/running on at least fourteen days this month. I always thought the challenges were based on the previous month’s achievements, but I’m pretty sure I got a lot more steps in during February.

If we were having coffee, I’d report that I’ve been struggling again. This led to a number of arguments between me and the staff. Particularly, it frustrates me to no end that some staff are much more likely to react angrily to my irritability than others. As a result, I don’t accept gestures indicating they support me from these staff. Like, if you’ve first been telling me off, I won’t accept it when you offer me comfort. Unfortunately, my assigned staff claims this differing treatment is just how it is and she says it’s because I don’t accept the same treatment from everyone. This came across as if she was holding me responsible for the different approaches.

If we were having coffee, I’d also share that I’ve been frustrated with my day schedule and particularly the lack of clarity in it. I particularly don’t like the fact that, each time, I’ll have to choose an activity out of fifteen or so options. Thankfully, I was able to turn my frustration around today and decide that, on Monday, I’m going to the next town to buy groceries and, on Tuesday, I’m going to cook dinner for the home.

If we were having coffee, I’d share that part of my struggle is the extreme discrepancy between my intelligence and my emotional functioning. I’m said to function emotionally at a level comparable to a child under 18 months of age in most respects, but my IQ is above-average. Moreover, I happen to have an interest in psychology and social work. As a result, I, for example, know more about the theory of care and support than most of my staff, but I can’t apply it to my own situation and not just because I’m the client.

Like, when I’m in a good place mentally, I sometimes find myself pointing out ways staff are asking too much of me emotionally, but precisely because I can say so, I’m judged not to need the support I need.

If we were having coffee, I would however also share that I still experience moments of joy. For example, on Monday, a new student staff was being introduced to my activities and we created a unicorn (of course) out of polymer clay. This time, because the unicorn was rather fat and the staff had placed the front legs far apart, I chose to add a heart to its belly. I also decorated its back with rhinestones. Two pictures below, because my staff couldn’t capture both the heart and the rhinestones in one.


If we were having coffee, lastly I’d tell you that I struggle with self-criticism and this also leads me towards less creativity. I, however, overcame the feeling that I “should be better” sometime on Tuesday when I created a rather simple bracelet. It was just beads stringed onto elastic wire. However, looking at my comment about emotional development, I sincerely believe I did a pretty awesome job, since a toddler can’t do this at all.

Sorry for the rambly post. I’m still feeling hazy after another meltdown. By the way, no meatballs for our evening treat, as somehow they’d disappeared.

A Recent Frustration Related to My Care

Posted on by Astrid

Hi everyone. I haven’t blogged in over a week because I’ve been struggling once again. Honestly, I can see why judging from my experience over the past 2 1/2 years, people would say I’m always struggling anyway. The thing is, there are and there definitely were times I am or was struggling less. Besides, to say that this is just the way I am, is blaming me for the system not meeting my needs. And we all know that the system is broken and this is a reality, but I’m honestly getting frustrated with how little recognition I get for my attempts at coping with this reality and how much blame I get when I fail at doing so.

Now on to why I’m struggling again. I mentioned about a month ago that I would no longer be assigned unfamiliar temp workers. This is a definite positive. However, with this home having twenty residents, many of whom with high support needs, the pool of so-called familiar staff consists of at least thirty people. That isn’t the problem: I am fine with all thirty coming into my room to do activities with me, just like I’ve always been fine with the occasional unfamiliar temp worker. The problem is that all thirty so-called familiar staff are supposed to be assigned to me equally often and I’m not allowed to have a preference. The reason is the idea that I’ll add more people to my trusted circle if they’re required to be assigned to me more often.

I can see their point, in particular because four out of eight staff who I consider part of my trusted circle now, are either on sick leave or leaving soon, be it temporarily (on maternity leave) or permanently. I can see why one would like to avoid a situation like with my assigned staff in Raalte, who left about two months before I did and who at the time was one out of only three staff I fully trusted. Then again, I’m never going to have a circle of thirty, just like most people don’t have thirty close friends. And that’s what this whole “get to know everybody” thing feels like. I do try to expand my circle as needed, but I just can’t treat all staff the exact same unless they treat me the exact same and, in that case, we’d all be losing sight of each other’s individuality.

Besides, the staff don’t follow their own rules when it suits them. For example, it’s a rule that I’ll see one staff for my morning activity and lunchtime, but they’ve been switching that around when they felt like it, yet telling me (and each other) of the rule that they must switch at other times. In other words, the staff require me to deal with a minimum of six switches of staff per day, but when it suits them, this can be increased and yet it can’t be decreased. That’s while I made it clear in the document detailing my care needs last summer that I don’t do well with staff switches. Yet they blame me for the agreements we made back then not working, even though they didn’t follow through on most of them. Most notably, they’d told me they’d try to have a trusted staff assigned to me most days for at least part of the day and that just wasn’t happening. In fact, eight out of ten times at least, the staff assigned to do nearly four hours of support with me, was a random, unfamiliar temp worker. I don’t blame myself for this not working out.

I’m sharing this post with the Writer’s Workshop for this week. It was a recent frustration, in that this rule (about required switching) hadn’t been adhered to as strictly as it’s now until last week. I’ve also had a lot of discussions about it with my support coordinator this past week. I’m having a care plan review next week and am planning to raise this issue both specifically and as an example of a general trend towards blaming me for a broken system and mistrust towards me. After all, staff are claiming I would only want my “favorites” assigned to me if they didn’t require staff switches as often as they do now. Let me just say this wasn’t even the case in Raalte, where I did have a core team of at least somewhat trusted staff.

Stabilize With Medicine

Posted on by Astrid

I talked to the support coordinator, the one who’s officially the other part of the home’s support coordinator but attends my meetings with the behavior specialist because I don’t get along with my support coordinator (my former male assigned staff). She had talked to the intellectual disability physician and I won’t have a meeting with her on tapering my medication until late September. The reason is the fact that there’s lots of temp workers at the care home during the summer months and they want me stable for now. Well guess what? If you want to wait for there to be few temp workers, you’d better wait for 2034, as I usually say. For those not aware, 2034 is my code word for never. It’s inspired by the book called 2034, which is about World War III.

I’m pretty angry about this whole thing, because well I already have mildly decreased kidney function as is. That is, I had mildly decreased kidney function a year ago at my last bloodwork, so who knows if it’s gotten worse now? And, as you might know, kidney disease doesn’t usually cause symptoms until it’s pretty advanced.

I don’t even mind waiting till September, except that this means seven months on my current med combo rather than the originally planned six weeks. And except that who knows what will get in the way in September? For all I know, the support coordinator might’ve gotten pregnant or sick or have left like the last one.

I honestly feel like they want to stabilize me with medicine rather than with the right support. And, for what it’s worth, I’m not very stable as is. Never was. Not with five different medications, many of which on high doses.

This post was written for John Holton’s Writer’s Workshop, for which one of the prompts is to pick a line from a song you like and use it as the title of your post. I picked the line “Stabilize with medicine”, which I’m not sure is a full line, from the song Serotonin by Girl in red. This song is rather explicit, so I hope John doesn’t mind me sharing it in his challenge.

A Rather Frustrating Monday

Posted on by Astrid

It’s past 10:30PM and I’m still wide awake. I just took a PRN quetiapine. My Apple Watch and the staff’s blood pressure cuff are telling me I should be super relaxed, in that my heartrate is 67 even when sitting upright. That’s rather low for me, but not worryingly low or so the staff say. Oh yes, I know normal resting heartrate is between 60 and 100, but mine is usually closer to 100. Oh well.

Today was quite intense, honestly. In the morning, the manager came by to talk to me about my meeting with the behavior specialist last week. She also, of course, told me a new staff would be starting his orienting shifts here and he’d start right this evening. Of course, like all new staff who’ve been hired over the past six months, the first part of the home he’s being introduced to is mine. Can you read my sarcasm? Well, it should be there. I’m rather annoyed at the fact that every new staff starts working on my side of the home rather than the other one. I know it’s probably because one of the clients on the other side gets really irritable when introduced to new staff. Well, maybe I need to show a little more of my irritable side.

Then, the temping agency housekeeper came to clean my room. She left my bathroom in a horribly wet state and left the tap on its hottest setting. Thankfully, that setting is not hot enough to actually cause burns, but it did hurt a little when I tried to wash my hands.

Once my day activities started, I went for a walk. My cardio fitness level was once again low, but it hardly bothers me anymore.

In the afternoon, my staff and I drove into town so I could buy a new pair of shorts for when I go on the elliptical or ride the side-by-side bike. The old pair pretty much falls off my butt. I also bought socks and some presents for my oldest niece, who will be three on Saturday.

In the evening, I went for a short walk with the new student staff, taking his camera and tripod with us to snap some pictures. I cannot yet show them, as I haven’t yet figured out which ones show what.

Then, I wanted to go on the side-by-side bike again, but got really frustrated trying to fasten the belts around my feet. They need to be really tight or my feet, particularly my spastic left foot, will fall off the pedals. That didn’t work out and I got really overloaded, so had a short meltdown.

Later in the evening, when I was alone, I started fretting about my health. That probably caused me to feel spacey. Now that I’ve processed all this in this post, I feel slightly better. It might be the quetiapine is working as well.

Negative Feedback: How I Cope As a Creative #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter N post in the #AtoZChallenge. I am feeling very uninspired today and almost gave up on writing this post, as my headphones decided to no longer work. Yes, those headphones I got for €239 a few weeks ago. The cable connection to my computer still works though, so I really have no excuse.

Today, I initially wanted to share some resources for newbie crafters, but that’d get rather boring. Instead, I’m going to share how I deal with negative feedback as a creative. This may get rather, well, negative, but oh well.

After all, I’m not thick-skinned at all. Like I said when writing about my creative frustrations and in other posts too, I get easily discouraged. As a result, my way of coping with negative feedback is usually to give up a craft entirely.

I didn’t do this when starting out with polymer clay. I mean, I did get some rather blunt comments early on, but I could see they weren’t meant to degrade my efforts or my ability to ever learn at all. It may’ve been because I had used polymer clay for a short time years before and, as a result, knew that it isn’t an inaccessible craft for a blind person.

It was different with card making. With that, I got hurt very easily when getting kicked out of groups for flaking out of my obligations for swaps etc. Still, it wasn’t until someone flat out told me that my work didn’t meet her expectations even though she knew that I was blind, that I decided to give up. Card making is not altogether inaccessible for blind people, but it can be very hard when you want to follow the traditional “rules”.

Then, with macrame, people doubted my ability to be able to learn the craft as soon as they found out I’m blind (and have mild cerebral palsy). With that, I decided, probably sensibly so, not to invest in a lot of supplies before I’d really decided whether I could master the craft. I so far only have one color of cheap macrame cord and a few supplies. I am so happy about this, since, with card making, I may’ve spent as much as €1000 without ever being remotely proficient at the craft.

Now that I’m okay as a beginner polymer clay artist, I still do get negative feedback at times. I can handle it when my staff point it out when I do something that I need to retry it as it’s not looking good. I also don’t mind people reacting badly to my finished projects. I remember once, when I’d published a polymer clay shell with a bit of a fleshy color to my Facebook wall, someone saying they were freaking out thinking it was a body part. That made me feel off for a bit, but I was quickly reassured by my staff as well as my other Facebook followers that it looked like a shell and I definitely hadn’t posted NSFW content or something.

On my blog, I get the occasional negative comment. Usually, it’s based on a misunderstanding and we’re easily able to resolve the issue. I deal with clear trolls with a direct hit to the spam folder. Then again, these are very rare.

Frustrations in My Creative Work #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter F post in the #AtoZChallenge. I didn’t change my mind, so today I’m writing about the things that frustrate me about being a creative.

The first thing that frustrates me, is the learning curve. This may contradict what I wrote yesterday about enjoying learning about other people’s creative processes. However, what I mean is the fact that it takes a lot of practice before I become even remotely proficient at a skill. This has been especially true for my crafty endeavors and less so in the area of my writing. I am both a bit of a perfectionist and quite impatient, like I said in my letter A post. This means that, if I had it my way, I’d be able to create perfect polymer clay sculptures right away rather than now, after nine months of practice, still barely having moved beyond the absolute beginner stage.

The second thing that frustrates me, is the comparison trap. This is related to the first and may once again contradict the point I made yesterday about loving to share my work. Indeed, I love to share my work, but knowing how others have moved far further along in their journey towards perfection within a certain timeframe than I have, can be quite frustrating.

Similarly, negative feedback can be quite frustrating to me. I am not that thick-skinned, to be honest and get easily discouraged.

Lastly, it is particularly frustrating especially with my polymer clay when I’ve worked on a project for a while and then once it comes out of the oven, it isn’t as I’d expected. Whether that is due to some mistake I made or some problem while baking – which I consider largely out of my control even though I really know it isn’t -, doesn’t really matter to me.

How I Deal With Anger

Posted on by Astrid

In today’s Sunday Poser, Sadje asks us what we do when we get angry. She seems to mean this question in two ways: firstly, how we express our anger and secondly, how we cope with it and calm down again.

I have always been relatively quick to anger. Particularly, my tolerance for frustration and distress is very low and I tend to express this as anger. During such episodes of distress, I may scream, yell, slam doors, etc. Over the past year, I’ve even occasionally shown slight physical aggression towards people.

To cope with this type of anger, my best strategy is to enlist the help of others to get me to think through whatever was causing me frustration or distress and/or to help me solve the problem. Usually, temporarily removing myself from the situation might help a tiny bit, but it will not help in the long run, as it will not get rid of the source of frustration.

Then there are these situations in which I’m angry because someone is being unjust towards me. When I am angry at being treated unjustly, similarly, removing myself will help for a while, but not in the long run. Assertiveness can help in that it allows me to properly voice my needs, wants and rights. I am still working on this, in that I tend too often to avoid properly advocating for myself and instead resort to less helpful ways of making it clear that I’m struggling.

When there is nothing I can do about the anger or its source at a given moment, what helps me is to safely express it, such as by hitting a pillow. I also used to sing certain songs that spoke to me. For example, there is a Dutch song called “Laat me” (“Leave me”) that I would always sing at music club when I was irritated at my treatment team in the mental hospital back in the early years. Now, hitting a pillow and screaming has the same effect.

After I recover from my anger outbursts, I do like to talk through what was causing them, whether I can solve the problem at hand or not. I, after all, find that other emotions are often masked as anger, such as shame, sadness or fear. By talking through my anger after safely having expressed it, I can often get to the bottom of what is troubling me.

How do you cope with anger?

How I Cope With Stress

Posted on by Astrid

Today in her Sunday Poser, Sadje asks how we cope with stress. We all face stress in our lives, yes, even the most laid-back people out there. Maybe they’ve just found better ways of coping with it.

I for one find that a major stressor for me is frustration with my disabilities. For this reason, it may be that my parents thought I was very laid-back until I became aware of my blindness when I was around seven. Now, frustration in general, such as with failing technology, can set me off, but really so can frustrations when trying to accomplish something.

So how do I cope? Over the years, I’ve found several ways to ride the waves of frustration. Dialectical behavior therapy and in particular the ACCEPTS skill set has helped.

I find that distracting myself by focusing on something other than the frustrating situation or thing helps. This is hard with my autistic tendency to perseverate. For example, when I get frustrated with a polymer clay project, it’s currently hard to let go and focus on something else. But it is necessary. This is why my staff encourage me to take regular breaks and also do other activities, such as walking, besides polymer clay.

I also find that talking through my problems sometimes helps. Then, I may realize I’m catastrophizing or using other cognitive distortions. Often though, to get rid of a stressor, I need someone to take over part of the problem, or all of it, from me. After all, my problem-solving skills are practically nonexistent.

Other things I do to cope with stress include finding relaxing activities, such as diffusing an essential oil blend or lying under my weighted blanket. Lastly, writing about my stressors, problems or frustrations also helps.

What helps you cope with stress?