It’s All a Blur

It’s all a blur, this life of mine. Moments, days, weeks, months – maybe soon years, who knows? – roll into each other. I don’t like it one bit, sorry not sorry.

I may not be able to fully lay the blame on my current care home with its chaotic and yet oh so boring routine and no day activities whatsoever. I might be able to create my own routine that would somehow differentiate between mornings and evenings, weekdays and weekends, summer and winter. If only I knew how.


This post was written for this week’s Six Sentence Stories link-up, for which the prompt word is “blur”.

Solo: Making the Most of My Alone Time

Today’s prompt for #JusJoJan is “solo”. It has many meanings, but the overarching one is “alone”. For this reason, I thought I’d use this as an opportunity to write about ways to make the most out of my alone time.

You see, I don’t really do well with alone time. It makes me anxious. At the same time, I need alone time. It helps me recharge. How can these two coexist, you might wonder. Honestly, I’m not quite sure.

However, the more important question is, how can I make sure the recharging effect gets the upper hand rather than my anxiety? The key to this is making the most out of my time alone.

In my old day schedule, I had random slots of alone time that could last anywhere between 15 and 60 minutes, sometimes longer if I didn’t come out of my room to alert the staff. This caused intense anxiety, because I never knew when I’d have time alone and, when I did, how long it’d last. This meant I didn’t know what activities to do during my alone time.

Now though, I usually have time slots of 30 to occasionally 45 minutes alone. In all honesty, I think the 30-minute time slots could be lengthened to 45 minutes if they could be decreased in number and by extension my time slots of activity lengthened too. This isn’t likely possible at my current care home though.

During the time of my old day schedule, I used to feel stressed when alone and as a result use up the time by wandering around my apartment. Now I occasionally still do this, but I try to put each moment of alone time to good use. For example, Bible study and blogging are things I can’t do when a staff person is in the room. I do these when I have alone time, but sometimes I struggle to finish them off during my 30-minute solo time slots. At the same time, I struggle to find meaningful activities that I can do within my 60-minute time slots (which are usually cut short) of one-to-one support. Part of the reason is my need to get into a routine – for example, of gathering my polymer clay supplies. Part of it is the fact that some staff start out by proposing a certain activity, which makes it hard for me to switch to wanting something else. And part of it is probably my mindset too, in that I get overwhelmed with not knowing how long an activity will take and thinking I “only” have this amount of time. This applies to alone time too.

I often say that, in an ideal world, I’d have one-on-one all the time. This isn’t true. In an ideal world, I’d have good chunks of alone time with staff only popping in once every 45 minutes (because otherwise I’d lose track of time), so essentially no extra care then, during later evenings and part of the weekend. I’d also have good chunks of supported activity during the day. Oh wait, that’s pretty much how I had it in Raalte and I was going to let go of comparisons with old homes. No, wait again, my day schedule back there wasn’t ideal either. But it allowed for longer chunks of activity time during weekdays and that’s really what I dream of.

My Hopes for 2023

Hi everyone and a happy 2023 to you all! Regular readers of my blog know that I don’t do resolutions or new year’s goals. Instead, I call them hopes. Whether that isn’t just the exact same but worded slightly euphemistically, is up for debate. However, I found that, many years ago, when I did lists of resolutions, they didn’t work out. Now that I call them “hopes”, I usually probably subconsciously stick to them more. I say this every year as an introduction to my hopes.

This year, I haven’t actually thought of many hopes I have. That is, I do hope to achieve many things, but secretly I do think my “hopes” do need to be somewhat realistic in order to make it onto my new year’s list. Doesn’t that make them just like goals? Oh well, I guess so. With no further ado, I’m just going to write down the things I hope to achieve in 2023.

1. Get to a healthy weight. I never dreamt of writing this when I started my healthier eating journey at the beginning of 2022, but I lost over 10kg in 2022 and I’m only 3kg above a healthy BMI now.

2. Keep up my movement routine. I have my movement goal on my Apple Watch set pretty low at 300 active calories a day. I’d really like to surpass it regularly.

I would also like to improve on the parameters of my physical fitness level, such as my heart rate variability. These are all really low right now.

I am hoping to start actually exercising in other ways besides walking. I’d love to start swimming here on institution grounds.

3. Get to a more stable place mentally. In 2022, I hoped to remain stable mental health-wise, which got ruined by my choice to move and its consequences. Now, I’m hoping to get back to a place of relative calm again.

4. Further lower my antipsychotic dosage. I really hope the move to my current care home doesn’t mean I’m on 25mg of aripiprazole forever.

5. Get to a meaningful day structure and day activities. Okay, I have the new day schedule, which is better than the one my support coordinator gave me, but it’s not what I’d hoped for when I came here. I am really hoping to explore day activities beyond my room, beyond 60 minutes at a time and beyond one-on-one.

6. Write regularly. This is another thing I was pretty awesome at in 2021, hoped to maintain in 2022 and lost track of due to the move. I even only wrote five blog posts during the month of November. I am really hoping to get back into the writing groove this year.

7. Further explore my creative side. I’d really like to find ways to do part of my polymer clay work independently, so that I can actually do more complicated things with my 60-minute time slots of supported activity.

8. Socialize more. This was one of the main reasons for the move, at least according to the behavior specialists involved. Indeed, it is a positive aspect of my current home that wasn’t there at my old home. I honestly don’t know whether I can socialize much with the people at my home, but I can at least try and, if that doesn’t work out, there are almost 400 other residents here at the main institution. I’d really love to talk to some of them more.

I’d also love to connect to my peers in the cerebral palsy community more. I’ll hopefully attend the countrywide cerebral palsy day again in April and also hopefully join the online meetings more often. I’m also hoping to get in touch with the Eye Association more. I know this was something I hoped to achieve in 2022 but didn’t.

9. Get serious about the basics of my faith. I had a discussion about faith with my husband yesterday and the bottom line was that I tried to run without having learned to crawl, so to speak, because I was watching John MacArthur videos, which are deeply theological, even though I’m really still a new believer. I mean, okay, I’ve been a Jesus follower for two years, but I’m still struggling with the basic concepts of the Christian faith. That’s probably why I call myself a “progressive Jesus follower” rather than unapologetically claiming my identity as a Christian. I really hope to move closer on my journey towards God in 2023.


I am linking this post up with today’s #JusJoJan post, for which the optional prompt word is “resolution”. I am thinking of writing another post about resolutions in a different sense, namely the Model European Parliament debating contest I participated in during high school. However, it’s past 9PM so I don’t think I’ll have the time or energy for another blog post.

Happy Homemaker Monday (December 26, 2022)

Hi everyone. Today I’m joining Happy Homemaker Monday. Okay, regular readers of this blog will know that I’m not a homemaker. However, my staff, particularly one of the student staff, are trying to get us clients at the care home more involved in the homemaking process. For example, coming in the new year, we may be able to actually help prepare our own meals once a week. (For those not aware, we do get home-cooked meals everyday here and I actually have reasonably good meal prep skills when supervised, but up till this point the staff always cook our meals because it’s quicker.) We will also get our own vegetable garden this spring.

Because we’re required to title our post “Happy Homemaker Monday” and Sandra never got back to me when I asked whether we’re actually required to be homemakers to participate, but the questions do speak to me, I’m not sure whether I’m actually allowed to link up. However, I’m just going to give it a try and if I get kicked off, so be it.

The weather: rainy most of the time and cloudy all of the time. I don’t like it, but am not sure which I find worse: this rainy but relatively mild winter weather or daytime temperatures below 0°C. Let’s just say I can’t wait for spring.

As I look outside my window: well, I have my curtains drawn as it’s evening here and I’m blind so can’t look out my window really. Oh well, I do have an outdoors light outside of my bedroom window which I can see when I have my curtains open and it’s dark outside, which it currently is. It’s probably not interesting enough for sighted people that you guys would want a picture though. Besides, no clue what setting I’d need to set my simple cellphone camera to in order to do this.

Right now I am: typing this blog post. I’m sitting at my desk in my living room. This is really the only place I can comfortably type.

Thinking and pondering: still worrying about my support coordinator doing away with everything agreed upon in the meeting we had on Friday about my care. I received the summary of what was discussed in my inbox on Saturday and it was indeed good. This means I wasn’t dreaming that everyone in the meeting at least said they were on my side. Still, my support coordinator is still on vacation and, even though several staff have been saying she can’t tear apart my day schedule, I’m still kind of worried. Planning to ask the other support coordinator for reassurance later this evening.

How I’m feeling: worried but grateful. Cautiously optimistic too.

On the breakfast plate: four slices of bread with chocolate spread. I normally eat two slices when I do eat bread, but I was in Lobith (at my and my husband’s house) and wasn’t sure I’d be back at the care home for lunch.

On the lunch plate: I had a currant bun and a regular, plain bun. I also had water and I really need to stay more hydrated.

On the dinner plate: I have absolutely no idea how to translate what we had for dinner into English. First, we had a “rundervink”, a kind of beef mince wrapped in bacon. We also had potato tarts. And the kind of salad we had, well, I’m clueless as to what it even was supposed to be. Truthfully, Christmassy (we celebrate Boxing Day as an additional Christmas day here) as it may have been, I didn’t like it. One of the positives about us clients being allowed to help meal prep, is that we finally get a real say in what we’re going to cook.

Listening to: the Healing Harps playlist on Spotify. Not currently – right now, like most of the time, I’m just hearing my text-to-speech software speak and the heating or something buzz -, but it’s the most recent interesting thing I listened to. I love it when trying to sleep or rest.

Watching: polymer clay tutorials on YouTube.

Reading: a Dutch collection of columns by a businesswoman turned special ed teacher. I just finished a book of stories by a Dutch ER doctor. I’m wanting to read more English-language collections of real-life stories too, but not sure where to start.

Around the house: did I even ever share here that my apartment at my current care home has a separate living room and bedroom? I also have a pretty large bathroom and a walk-in storage closet, as well as an enormous terrace. Now that it looks like I’m not going to look for another care home after all (at least not within the near future), I may want to look towards actually making my apartment into a home-like place. I really hope to learn to take better care of it in the new year, which includes keeping it relatively clean and organized but also nicely decorated.

To-do list: I don’t really do those and didn’t make any plans for the next day or even next hour until very recently due to the nature of my support here. Now, thanks to my improved care, I can start actually having a bit of a to-do list. On it currently is finishing the polymer clay unicorn I started crafting with my assigned staff on Friday.

What I’m creating: just cured some polymer clay bear-shaped pieces that I’ll turn into earrings later, as well as a number of beads (well, I’ll still need to drill the holes). This evening, I crafted a turtle out of polymer clay, which is still waiting to go in the oven until I can cure it together with the aforementioned unicorn.

I still have a lot of finished polymer clay creations I didn’t show you all too. My most recent one is the below snowman.

Bible Verse/Devotional/Prayer/Quote: I am struggling with my faith quite a bit lately, so here’s a space for me to pray. God, help me see Your presence. I’m struggling to feel Your nearness lately. Please help me realize that You are there for me even as I go through these hard times, or especially then, or… well, oh wait, that You are always there. In Jesus’ name, Amen.

Some Glimmers of Hope

Hi everyone. It’s once again been a week and a half since I last posted. This week and a half hasn’t been boring at all. In fact, it’s been filled with events that triggered all kinds of emotions in me.

Last week Saturday and again on Monday, I had some very difficult conversations with my assigned staff. She turned out not to mean things too badly, but just got very frustrated with my trouble understanding non-literal speech. We also once again ran in circles about this home being very different from the home I come from and my being used to the old home and never getting it like that here. I know, I don’t expect things to go precisely the same as they went there, but there’s something between the way I was treated at my old home and the very harsh way I’m treated here.

These conversations got me so frustrated that I started thinking I may need to get an independent client supporter to help me find another home. After all, moving to another home within my current care agency, isn’t an option.

Then on Wednesday, a staff told me about her plans for getting day activities rolled out at this home. I’m not sure I can participate in all of them, but some I can take part in. This staff also assured me that my assigned staff is completely on my side.

This also became clear when I had the meeting with the mediator, my assigned staff, the behavior specialist and my mother-in-law yesterday. My assigned staff admitted that some (most, in my experience) of her coworkers treat me just like they treat everyone else at this home. Apparently the harsh approach is what the others need, but I don’t (unless I for instance insult a staff member, which only happens during a severe meltdown, 99% of which can be prevented with the right support). We agreed that my signaling plan (for preventing and averting crises) will be revised, but the behavior specialist assured me that for the most part it can stay the same. After all, she said I haven’t become a different person since moving here. That felt validating.

I positively told the people attending that, since implementing my new day schedule, things have significantly improved. I also told them I realized this may be all I can expect of the staff, so I am (trying to be) all happy when it goes smoothly. However, when it doesn’t go smoothly – for example, when the staff are frequently late for my assigned support times or leave me alone beyond my assigned alone times more than occasionally -, I’m not happy. It gets worse when the staff justify their tardiness or leaving me alone beyond my assigned alone times with some comment about my not having (full-time) one-on-one. Their reasoning is that, since my one-on-one isn’t full-time, I essentially don’t have one-on-one at all and can just expect staff to pop in whenever they please. Their terminology is a bit screwed (I think I explained it in a previous post) and it irks me beyond belief. I know I don’t have full-time one-on-one and I don’t expect it, but I do have the day schedule for a reason.

Both the behavior specialist and my assigned staff validated my need for the day schedule and for staff to stick to it. I said I understand that a severely challenging situation among my fellow clients could be a factor preventing this, but the behavior specialist said this shouldn’t happen more than a few times a week. Currently, it’s usually at least once a day (and I obviously don’t mean the times my staff is running like five to ten minutes late for my support). My assigned staff actually went so far as to say the extra staff is there primarily for me. She is going to clarify this and some other things in a basic info sheet on me that all staff can read when starting their shift with me.

Altogether, the meeting gave me some glimmers of hope. It remains to be seen whether the staff actually do something with what came out of it. I do still have my worries about my support coordinator overriding all this once she returns from her time off. Then again, I am pretty sure that, if the behavior specialist actually means what she said, my support coordinator can’t really do that.

Re(dis)covering My Creative Self

Today I crafted a dachshund out of polymer clay. I haven’t put it into the oven yet, as I still want to create other things before baking them all together. I sometimes feel a rush to create, create, create as who knows when this will end? In two weeks’ time, my support coordinator will be back and may decide to put my old day schedule back in place, in which I had only one tiny moment when I could possibly choose to work with clay, inbetween my morning coffee, a long walk and my lunch.

I am taking baby steps towards becoming my creative self again. This blog post is part of the process, as writing too is part of creativity. I notice my writing suffered significantly due to the chaos that was (and may become again) my support at my current care home. I know I’ll still have lots of time to write if my support coordinator puts my old day schedule back in place, but time isn’t the only factor. Inspiration is, too. And when all I do is try to survive from moment to moment – the staff’s terminology for the times they step in to support me -, I am not able to be creative at all.

I am really trying to look at these few weeks as an opportunity to re(dis)cover myself as a creative person, not just as a disturbed, manipulative yet oh so intelligent person, like most of the staff see me. My hope is that the staff who see me as primarily oh so intelligent yet disturbed and manipulative, will soon realize that, with the right support, not only will those “disturbed” behaviors lessen, but I will be able to show them my artistic side. If not, I am hoping that, soon enough, the staff who do get me will be able to convince my support coordinator and those who agree with her that this is not the right place for me. They have seen a glimpse into what I can be like when I am properly supported and I am cautiously optimistic that they can help me maintain this sense of myself, regardless of what happens when the support coordinator returns from her time off.

#WeekendCoffeeShare (December 10, 2022)

Hi everyone. How are you doing? I had my last cup of coffee for the day, but still I want to join in with #WeekendCoffeeShare. I guess you could get a Senseo if you want one, or a cup of tea, or soda. Or you could go for water like I will now. Let’s have a drink and let’s chat.

If we were having coffee, I’d ask you how your weather’s been. It’s been a month since I did a coffee share post and winter has well and truly arrived by now. Daytime temperatures hardly get above 0°C, although we don’t get very low night-time temperatures. Thankfully, despite the cold, I’ve been able to go on walks everyday, as it’s not been raining that much.

If we were having coffee, I would share that I finally reached breaking point here at the new care home last week and my mother-in-law called the home to get to speak to a higher-up, either the behavior specialist or the manager. She was told that I’d had a good day that day. While that was mostly true, it wasn’t about that day. My mother-in-law then contacted the mediator I had been in touch with too. She is independent and helps advocate for clients or family members but is paid for by the care agency.

After a week of playing phone tag, the mediator finally got in touch with the manager and was able to convince her to schedule a meeting between me, the mediator herself, a staff and the behavior specialist. This will most likely take place before Christmas, so the staff who will be attending won’t be my support coordinator, as she’s off on vacation till after then. I did ask that my mother-in-law be invited too, which the mediator initially didn’t feel would be appropriate. Her reasoning was that it’d be too many people attending and that she (mediator) would be there to support me already. However, the mediator is not able to realize how much I’m not able to process during a verbal conversation, so I stood my ground.

If we were having coffee, I would share that, earlier this week, one of the staff and I were able to create a new, more suitable to me day schedule. It was (unofficially) started today (while we’re waiting for the staff to type it out). The new schedule is organized around timeframes, like my day schedule at the old care home, but of course with the note that these are rough directions. I am quite satisfied with my first day using the new day schedule, but of course I do realize that it may only be 2 1/2 weeks before it will be trashed by my support coordinator.

If we were having coffee, I would tell you that I am loving spending time on my polymer clay again. I am not getting my hopes up yet, but, in my new day schedule, I have lots of opportunities for claying. I made use of them today and created my first actual unicorn! Granted, it doesn’t have a mane or tail yet, because with the particular tutorial I used, you had to bake the unicorn and then attach those parts and bake again. I am hoping to do that tomorrow. I however am completely excited about crafting again. Now all please pray my new day schedule works out and my support coordinator won’t trash it when she comes back.

If we were having coffee, lastly I’d tell you all that I got some lovely presents in the mail from my parents on Thursday. I got a lavender-filled unicorn soft toy that can be heated in the microwave. I also got three different kinds of candy: chocolate, licorice and so-called Dutch traditional candy, which was hard candy. I loved all of them. The online shop also sent a few random samples of a sugar soap, so-called immune boosting capsules and some kind of fruit and veggie powder that you need to put into water and drink. I threw these away. So far, I haven’t actually microwaved the unicorn, but I did hold it when trying to sleep.

#WeekendCoffeeShare (November 12, 2022)

Hi everyone. It’s once again been a while since I last wrote. Today, I’d like to write a post for #WeekendCoffeeShare. I drink more coffee here at the new care home than I used to and it’s not decaf in the evenings. That’s one thing I don’t mind, although I now realize the caffeine might be contributing to my poor sleep. Like I said a few times before, I’m struggling greatly otherwise too. Let me try to share a bit about this past week. Grab a cup of coffee, cappuccino (we have a milk frother here) or tea if you’d like one and let’s chat.

If we were having coffee, firstly I’d start out with the slightly positive: the weather. Although others – climate activists – would see this as a negative (and I understand why), I am so relieved we have relatively mild fall weather here. Daytime temperatures rose to a maximum of between 12 and 17°C over the past week and we didn’t get much rain.

If we were having coffee, then I’d share about the negatives, the list of which starts with my day schedule. I requested one because, otherwise, staff would give me one-on-one support whenever they so wished. However, as it turned out, the day schedule was so vague that staff could still interpret it however they wanted to.

For instance, some staff had gotten it in their heads that, between each activity, regardless of how long that activity took, they’d need to leave me alone for 30 minutes. I said sarcastically that I’d have to think of activities that lasted two hours then, but the last staff who openly told me this about the 30 minutes between each activity didn’t get my point and said an activity could take 30 minutes or whatever too. For clarity’s sake, I have unlearned to initiate activities that take longer than 30 minutes myself because I know staff will usually tell me they don’t have the time, even though I got 90 minutes of uninterrupted one-on-one from my old home’s staff each weekday morning and two hours each weekday afternoon.

Like you may guess, my day schedule is organized around activities, not timeframes. I understand this if you want to put into it specific activities such as “walking” and can’t be sure how long each walk will take. That’s why my old home had “supported activity” in my day schedule. However, it appears as though my staff here want to be able to decide on a daily basis how much one-on-one support to offer me and usually this is not dependent on my need for it, or even on my fellow residents’ daily care needs. Not that those should matter, since my one-on-one is *my* one-on-one, not my fellow residents’. However, it’s about 90% dependent on staff qualities: whether they smoke, whether they’d rather do stuff on their phone or chill out with coworkers than help clients, whether they can or want to set boundaries on my fellow residents’ demands, etc.

As a result of all this, I tore up my day schedule on Monday and life hasn’t been worse since.

If we were having coffee, lastly I’d share it’s my husband’s birthday today. He doesn’t celebrate it or so he told me, but he will be coming here for a visit tomorrow.

How have you been?

My Ideal Ways of Spending My Day

Hi everyone. I have been thinking about ways in which I would like to spend my days if I get to move to the main institution. Like I said yesterday, each client has their own day program, so they aren’t required to go to the day center by default. I also will keep my one-on-one support at least until December of 2023. In today’s post, I want to share my ideal ways of spending my days. These are things I might be able to implement should I remain here, but I’m dreaming big here and thinking of ways the institution could accommodate me too.

First, I would like to start my day in my room like I currently do. I don’t think I can handle eating breakfast in a group as of yet. That might change in the future. I would like to eat all my main meals in my room, but go to the living room for coffee breaks when I want to.

Ways I would like to spend my day, include crafting of course. I would really like to keep on doing my polymer clay work and maybe even sell it in the day center’s shop.

The day activities I am thinking the institution could help me meet my dreams with, are those related to sports and physical activity. I know the institution has a small swimming pool on grounds and I’d really like to use it. I’m not sure whether they might have exercise equipment too, like the type of equipment you’d find in a gym. If they do, I’d love to utilize that too.

The institution is in a rural estate area, so I’d love to go for walks on grounds. I’ll take my iPhone (by then, I might have a new one, who knows?) to take pictures of the beautiful nature.

I’ll hopefully at some point be able to take short walks on grounds on my own too. For that, I’ll need orientation and mobility training from the blindness agency, but I’m sure I can get that.

I may occasionally want to relax in a snoezelen® room. Then again, if I’m correct, I can keep my weighted blanket if I move within this care agency, so I might not even need a snoezelen® room.

I’ll probably also want to go to a day center every once in a while to socialize with other clients. The institution has three day centers I believe, but I’m pretty sure clients from the home I might go to won’t go to all three. That’s okay though, I’ll find out what suits me.

An Engaging Wednesday

Hi everyone. I originally wanted to title this post a “creative”, then “inspired” Wednesday. Both fit, in a way, but neither fully captures the essence of today. Not that “engaging” does, but I ran out of adjectives to think of. I spent the day crafting and watching personal growth YouTube videos and that’s what I want to talk about. Oh, I could just have written “A day spent crafting and watching YouTube videos” as my post title. Then again, that’s too long.

In the morning, I finished a YouTube video in which an enneagram geek talked about annoying things type Fours say and do, then watched another of her videos about things to know before dating an Eight. No, I’m not looking to find another lover. My husband is an Eight and I just thought it funny to learn about all the stupid mistakes I’d made all along. Of course, I could just listen to my husband (that’s the first tip!).

Re the other video, I may write a separate blog post listing all the ways in which I relate to all these annoying things Fours do and say. And yes, I related completely to all but one of them.

Then, when my day activities started, I had my morning coffee, then went for a short walk while it was still cool enough outside. My orthopedic shoes arrived yesterday and I can now actually walk on them without any pain. I won’t get my hopes up, because I have been saying all along that they won’t be ready until 2034 and that’s exactly when World War III is going to start according to a book by that title. I am too superstitious to admit publicly that my shoe problem is over yet.

After my walk, my staff and I drove to the supermarket for quark, which I eat for breakfast. We also both got ourselves a sausage roll for lunch and she treated me to ice cream cones. Of course, I just ate one today and she had one too, so the rest are in the freezer.

In the afternoon, I first used my alcohol inks that I’d bought at Action several weeks ago. I had finally managed to create earring pieces that didn’t have air bubbles in them and was going to add a little alcohol ink to them for some extra color. The pieces haven’t been turned into actual earrings yet.

Then in the evening, I crafted the last of the polymer clay beads I’ll need for the necklace I’m making for the person from the other care home. I’m probably going to put together the necklace tomorrow. Overall, it was a good day.