10 on the 10th (September 2024): This or That?

Posted on by Astrid

Hi everyone. Today I’m participating in 10 on the 10th. This month, it’s a fun this or that. Let’s get into it.

This or that: A long term meaningful relationship with someone you see only once a year (platonic or otherwise) or lots of short term relatively meaningless relationships with people you see regularly.
This is a toughie, as I’m not sure what “relationship” means. Do professional relationships count too? In other words, would I be completely on my own aside from the one time a year I’d see my significant other? That’s impossible for me. However, if it means not having any real connection with anyone else but they could still help me (yet how would we define “connection”?), I’d definitely choose the one meaningful relationship. I, after all, would choose my spouse even for a once-a-year visit over all the meaningless interactions with my staff. I however do need to receive care.

This or that: A bouquet of fresh flowers every week or a flowering bush every year.
A flowering bush every year! I don’t really care for bouquets of flowers and I’d love a flowering bush in my yard-space-thingy at the care home.

This or that: A luxury, all expenses paid cruise to the Antarctic or a week in a beach shack off the beaten path.
A cruise to the Antarctic. I’m not a fan of the cold, but no-one said we had to leave the ship. And I don’t care for beaches.

This or that: Pumpkin spice everything or pumpkin spice nothing.
Pumpkin spice nothing. The only thing with pumpkin spice in it I like a little is coffee, but it isn’t like I don’t enjoy coffee without it.

This or that: Warm, sunny days with high humidity or cold, sunny days with little humidity.
You’ll probably be surprised here, but I’d choose the cold but sunny days with low humidity. Having recently experienced warmer, high-humidity weather, I feel that as much as I loved the heat, I hated the humidity. Last night, in fact, was my first night of not sweating profusely and I am so glad for it.

This or that: A vintage real fur coat or a new faux fur coat.
New faux fur coat. Until I read Marsha’s answer, I didn’t even realize faux fur is bad for the environment, so I thought choosing the new faux fur coat would be a win-win: new coat plus less animal cruelty.

This or that: The car of your dreams wrapped with a logo of some kind or the car you currently drive.
I don’t drive a car, since I’m blind, so I’m going to choose for my spouse and we’re both happy with the “Freezer Fiat”, my nickname for the car my spouse currently drives. My spouse, in fact, only started the lease on it last January and this one is pretty much our ideal car. In this sense, I get it both ways. Although I personally wouldn’t mind a logo, I know my spouse wouldn’t tolerate it.

This or that: Beautiful stilettos crafted specifically for your feet or sneakers you’ve worn and molded to your feet.
I guess the point of this one is to choose between beauty and comfort and, if you’ve read about my shoe saga, you know I’d choose comfort. My orthopedic shoes are quite ugly but they’re comfortable. Same for my walking shoes, which I actually think are sneakers. Besides, I absolutely cannot walk on heels so stilettos would basically mean a life without walking.

This or that: The house of your dreams painted in colors you despise or a small cottage you can paint in colors you love.
I would personally choose the house of my dreams, but since that basically is a small cottage because I’d get lost in anything larger, I get it both ways again. I am blind, but still would love to have my little living space painted in all pastel lilacs and pinks.

This or that: Your favorite food every day for a year or foods you’ve never tried every day for a year.
My favorite food everyday for a year. I don’t like to try out new foods and would hate to have to try new foods each day for a year. Of course, it would get a little boring eating the exact same food everyday, but I’d take that over having to try out something I probably won’t like.

A Good Meeting With My Support Coordinator and Behavior Specialist

Posted on by Astrid

Hi everyone. I really want to write more about what’s on my mind and, after a few months of struggling, I finally have some good news. I just saw in my private journal in the Day One app that it was a year ago when I heard my moving date to this home. I moved two weeks later. How time flies! After a meeting with the behavior specialist and my support coordinator on Monday, I can safely say that, if the things we agreed on will actually happen, I’m going to have a pretty good life here.

I had requested this meeting a few weeks ago and it was originally scheduled for the 17th of September, but thankfully there was time to do it on Monday. We mostly discussed a document I’d written sometime in early August detailing my care needs (as I see them). Thankfully, most were things the behavior specialist and support coordinator could agree with me on. Here are the things we’ve decided.

1. Less staff switches and more clarity about who will be supporting me during the day. Currently, it’s only clear who will do my two-hour-long activity in the afternoon and the rest is guesswork. I wrote that I can’t help trying to figure out in my head who will be supporting me for which of my eight or so support moments during the day. The support coordinator and behavior specialist came up with a schedule for who will support me when based on what times each staff comes on. This, and all other agreements, won’t take effect until sometime in late October.

Staff will also get designated time to write up their daily notes about me. I also requested staff do a short handover (like, two minutes on how I’m generally doing) when they switch. I can’t remember what was agreed upon about this, but it should be relatively easy with the fact that I’ll have mostly no more than four staff supporting me over the course of the day.

2. My day schedule for weekends will be changed to be the same as my weekday schedule. Currently, there’s a fifteen to thirty-minute time difference, which is confusing. I originally proposed to remove an activity time slot from my one-on-one on weekends, so to make it very different, but that didn’t seem to be a good idea. I honestly mostly said this to stick to my allocated one-on-one hours. After all, the other support coordinator used to be really strict on these.

They’re going to try to get me slightly longer staff support in the evenings. Currently after 7:15PM, I’m supposed to be by myself except for a few two-minute check-ins.

They were also very clear that appointments with the physical therapist, play therapy etc. are not dependent on my day schedule. What I mean is, if they happen to be during a support moment, fine, but if the therapist’s most suitable moment is outside of my one-on-one, that doesn’t mean I’ll need to compensate or go to therapy without staff support. The other support coordinator had been shoving my day schedule into the physical therapist’s face before she could even pull out her calendar, which led me to say that PT isn’t day activities so shouldn’t be during my activity time slot and I’ll go alone if this means no support.

Finally, it was agreed upon that, if I come out of my unsupported time in distress, staff will help me and this does not need to be compensated for (unless it takes so long that staff’s other tasks will suffer).

3. The support coordinator will be advocating for there to be a trusted staff for me at least part of the day most days. The other support coordinator is the home’s planner and he’s been really tough to get along with, so we’ll see where this goes.

The support coordinator did say that she and my assigned staff will try to see me regularly too. I can also ask one of my trusted staff whether I can talk with them (support coordinator or assigned staff) about something.

4. I asked for recognition of how far I’ve come over the years with respect to for instance accepting temp workers, accepting unexpected staff changes, etc. This was quite a hard one to explain, but it eventually made sense.

5. I asked to no longer be let out the door when in distress. I agreed to be physically restrained and led to my room if necessary too. This is going to take effect sometime next week, since I felt really let down when the staff opened the door for me.

I later realized that this is really already in my crisis plan, but it contradicts the support agreement that I’m free to leave the home as I please and as such staff unlock the door when I want to leave. How this will all be put down on paper, is not fully clear with me, but I’m confident it will work out.

Overall, I’m really pleased with the outcome of this meeting. The only problem I can foresee is the other support coordinator, who is really coordinator for my side of the home, discarding everything as unworkable.

#WeekendCoffeeShare (August 10, 2024)

Posted on by Astrid

Hi everyone on this beautiful Saturday in August. I’m joining #WeekendCoffeeShare today. It’s nearly 10PM, so I’ve long had my last cup of coffee and my soft drink for the day. I, however, do have Kinder Country candy bars in my cupboard, as well as lots of other candy. I bet I could persuade the staff to open the cupboard for you, but I can’t persuade them to brew you a coffee. Water will have to do. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. It’s mostly been quite warm with daytime temps in the mid to high 20s Celsius. We did get rain yesterday, but thankfully no thunderstorms. On Monday, the daytime high is supposed to be 32°C. I’m a warm weather person, but that’s too hot even for my liking.

If we were having coffee, I’d tell you I did a lot of walking over the past week. On four days out of the past seven, I got in over 100 exercise minutes according to my Apple Watch and I didn’t even go swimming this week, as the institution pool is closed now.

If we were having coffee, I would tell you that I’ve been struggling a lot lately. Part of the reason I’m showing it more might be the fact that I discontinued my morning dose of topiramate a little over a month ago, but it’s not (just) that which explains why I’m feeling like crap. After all, I’ve been feeling like crap for months. Make that years, honestly. I am realizing I never recovered from the blow to my self-esteem that was being more or less kicked out of the care home in Raalte. No, don’t interrupt that I wasn’t kicked out, since I know I literally wasn’t. However, when I realized the intensive support home was the nightmare it was and asked to be put on the waiting list to return (or actually return, since I asked before my room was filled up), I was told that some people had actually been glad that I’d left.

Why is this relevant now? Because, even though my current home is better than the intensive support home, I’m still feeling like I’m massively overloaded and my capabilities are massively overestimated when I’m struggling. This leads to staff not following my current support agreements, which even when followed to a T create just about barely manageable a care situation if even that when I’m feeling low (they’re okay when I’m feeling good). I know I said the same of my day schedule back at the intensive support home, but I only said so because my staff there had already decided I was a spoiled brat and wouldn’t stop complaining until I had full-time one-to-one. Which was almost correct before topiramate, but it wasn’t when I was on this medication. And it isn’t now either. After all, when I wished for near full-time one-on-one back in 2021, I didn’t realize its implications in care. I do now.

I realize I might need to go back on my full dose of topiramate (even though the evening dose is going to be discontinued next week too), but I don’t think it’s an excuse to keep everything else the exact same, since my needs weren’t being met before I discontinued this medication. In short, yes, the med might get me to shut up, or it might not, but either way something else needs to change too.

After many meltdowns, I finally wrote down my care needs in a document and E-mailed this to my assigned staff. I did water them down a little to make them manageable within the way my home operates, but not so much that I’d have every reason to still complain if the team decide to implement this. At the end of the document, I put in a brief summary of my care in Raalte (in early 2022, so when the team had already fallen apart) and asked for recognition of the improvements I’ve made since. I mean, I don’t seriously request to be moved now (I do blurt it out during meltdowns) and I wish I got half as suitable care as I got back then.

The support coordinator mostly making decisions about me, is on vacation now, but she’ll return on Tuesday. I hope I’ll have a meeting with her and the behavior specialist soon to discuss my needs.

If we were having coffee, lastly I’d share some positives of the day today. I realize this post was mostly negative, after all, but today was a pretty good day. Here are some reasons why:

  • My assigned staff was here this morning.

  • She brought me a cup of coffee right when waking me up.

  • Even though we were late finishing my morning routine, the staff coming for my morning activity came right on time.

  • I went for three walks today.

  • I had a waffle with forest fruit jelly, powdered sugar and whipped cream on it with my afternoon coffee. And a macaron in the morning. Sorry not sorry, dietitian.

  • I was able to ask the staff who did my afternoon activity with me, whether she’s leaving (which I thought because I’d seen her with a client from another home) and thankfully she said no. I am proud of myself for up front asking her rather than getting distressed.

#WeekendCoffeeShare (July 6, 2024)

Posted on by Astrid

Hi everyone. Today, I’m joining #WeekendCoffeeShare. As I start typing my post, I’ve just had dinner, but I probably won’t be finished with my post until after my evening coffee, as I’ll take a break from writing for my evening activity time slot. In case I am able to offer you a virtual coffee – which I will anyway, since it’s virtual -, I will offer you a stroopwafel biscuit with it too. I bought those at the supermarket this afternoon, because the staff ordering groceries this week either forgot to order large cookies for the weekend or thought they’re bad for our health. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d moan about the weather. It’s been rainy and chilly most of the week with daytime temperatures barely reaching 20°C. On Wednesday, the daytime high in fact was as low as 16°C.

If we were having coffee, next I’d share that I tore my Apple Watch wristband in two last week. That is, I pulled a tear into it when putting it on once, then when trying to put it on once more thinking I could still use another hole, I tore the entire thing in two, thereby dropping my Apple Watch. Thankfully, it didn’t break, but I couldn’t use it for a couple of days because of having no wristband. I mean, the wristband that broke wasn’t the original one, but somehow I must’ve discarded part of the original, since I could only find half of it.

I initially tried to order a new wristband and screen protector online, but the Apple Store would only let me pay by credit card and, though I did manage to order a screen protector off Bol.com, it was delivered to my in-laws’ house and hadn’t been delivered there yet by the time my mother-in-law visited me on Tuesday. I finally decided to just give it a try and order a wristband at another store and have it delivered to the care home. Like I’ve said a few times, the care home does have its own postal code, but I was originally instructed to address mail to the main building and add my home as second address line. Bol.com won’t accept second address lines and so I always used to have them deliver to my in-laws. Not anymore, since the wristband, addressed to the care home, arrived promptly and so did the screen protector I ordered that evening. Now I’ll have two screen protectors once my spouse brings the one that’s lying around at my in-laws’, but who cares? I have a working Apple Watch at last!

If we were having coffee, I’d tell you that the fact that it was raining plus the fact that I didn’t have my Apple Watch meant I didn’t walk nearly as much over the past week as I usually do. On Monday, I got pretty frustrated, because a temp worker happened to be assigned my two-hour activity time slot three times this week. Granted, he’s a regular temp worker here, but I had not yet trusted him enough to do anything other than play games and go for medium-long walks. On Monday I was anticipating two hours of dice games because of the weather, but thankfully it stopped raining eventually and we could go for a short walk.

Then on Tuesday, he told one of my most trusted staff that he’d love to work with clay with me. On Monday, the way he’d suggested we work with clay, it sounded as though he was just rattling off my activity list and I don’t do clay with staff I don’t trust to show at least some interest in it. I mean, they don’t need to know anything about polymer clay or even crafts in general, but if they’re the type to just sit around playing on their phone, a complex activity like polymer clay isn’t for them and me to work on together.

So on Wednesday, I decided to take the plunge and make a unicorn with him. At first, I used Cernit, which was way too soft, so I eventually gave up and chose Fimo. He asked to take the finished unicorn home with him to show his children, which I was happy to allow him to after I’d taken a picture, since I have many unicorns anyway.

Polymer Clay Unicorn

If we were having coffee, I’d tell you I started tapering one of my medications yesterday. It’s not the medication I originally wanted to taper, which was my antipsychotic, aripiprazole (Abilify). Instead, the intellectual disability physician suggested I discontinue my morning dose of topiramate (Topamax), which was supposed to help against nightmares and flashbacks. So far, I’m not noticing any difference good or bad, but it’s still early days of course.

If we were having coffee, lastly I’d tell you all to come to my home tomorrow. No, not really, but we will have a barbecue here. The parents of one of my fellow clients organize it, so I decided to buy them some chocolate as a thank-you gift.

My Current Night-Time Routine

Posted on by Astrid

Hi everyone. I totally forgot about Writer’s Workshop this week, even though there are several prompts that appeal to me. I might just write another post tomorrow about another prompt, but tonight, I’m talking about my bedtime routine. Oh wait, I wrote a post about that already in 2022. Reading it makes me miss Raalte so much… even my night-time routine was better. Oh well, here’s my current night-time routine.

My night-time routine starts at 8PM with my getting into my nightwear. Even though this is early, I’m the last of my care home to get dressed into my nightwear. I also get my last round of meds at 8PM, which thankfully doesn’t include sleeping pills. The one time I took a sleeping pill while here, I had to take it at 9PM, which is still very early for me.

At 8:45PM, I usually get a small snack or a bit of fruit, because like I said I go to bed late and I’d feel hungry if my last food of the day (except for a biscuit at evening coffee time) was dinner at 5PM. Then at 9:30PM I brush my teeth, my staff lock my door that leads to the backyard and turn off my lights. Since I’m blind, I can function without light and, if the staff don’t turn off the light for me, I might forget or be bothered by the light if it’s set really bright, and I don’t know how the switch works.

Once I’m ready for bed, I turn off my computer and check the battery status of my iPhone. I sometimes forget to charge my Apple Watch before bedtime and then I put it on the charger for a few minutes to at least get a bit of power to last it through the night. Depending on the battery status of my iPhone and my mood, I might turn on relaxing music either for an hour or throughout the night.

I take off my slippers and usually my socks (except in the freezing depth of winter, then I leave my socks on). I have a weighted blanket that I lie under year-round. And no, it isn’t exceptionally hot in summer. I also fetch two specific stuffed animals: the lemur will have its tail across my stomach and the dolphin I will hold in my arms. I have about five more soft toys in my bed, but these usually just lie around my pillow.

I can sleep in all kinds of positions depending on my mood, the temperature in my room, etc. I usually have the headboard of my bed turned up pretty high. When I can’t sleep, I also turn the other end up. Yes, I know, it sounds weird. I am so grateful for my adjustable bed though. It isn’t a given, since just after I’d gotten this one in like 2021, the higher-ups in my care agency decided that people who weren’t severely physically disabled, didn’t qualify for adjustable beds. They didn’t take away mine though, thank goodness.

Polymer Clay Makes Me Smile #WeeklySmile

Posted on by Astrid

Hi everyone. I’m still struggling with attachment issues and, to make matters worse, my assigned staff went on sick leave just after I told her how intensely I was struggling. I can’t shake the thought that it’s my fault, no matter how many times the other staff say that it isn’t. I do try to focus on the positive and stay as active as I can be though. Today, I’m participating in Trent’s #WeeklySmile. I’m also joining in, a day late, with Sunny Sunday. That way, I’m spreading the word about these two positive prompts while sharing things that made me smile.

Well, most of the things that made me smile over the weekend have to do with polymer clay. First, on Saturday, I started on a bunch of earrings that I am not 100% sure with what to do with them yet. Currently, they’re mostly just green cutter earrings (or really earrings-to-be, as I haven’t added the findings yet) with no design or whatever, but it was fun working with my cutters anyway.

One thing I did discover today while trying to finish one pair of earings, is that you can actually sand the top of earrings, that is, the side that will be visible when wearing them. I actually achieved great results sanding a pair of earrings with finer sandpaper (starting at 400 grit then 600 then 800 then 1000). Until now, I always thought that the side with the design on was pretty much as is, because you’d sand off the design. Granted, my trial pair were just green with no design, but my next pair will have a design on them.

The next thing that made me smile is discovering yet another great shop for clay cutters, texture rollers, silkscreens, etc. Another thing that made me smile was reading up on some simple earring projects on one shop’s website. I honestly think I’d love to try these out. It’s my birthday in a little over three weeks, so I really hope I’ll get some new things from one of those sites.

I really should get some display materials soon, as I don’t feel comfortable showing my earrings while wearing them myself and some of them are gifts too.

This new hyperfixation really makes me so excited. It’s part of polymer clay in general, of course, which I’m into already. This means I feel less like a failure if this thing doesn’t work out. At least it means only part of a hobby isn’t suitable for me. But I hope it is.

#WeekendCoffeeShare (May 18, 2024)

Posted on by Astrid

Hi everyone. How are you doing? I’m joining #WeekendCoffeeShare again. It’s nearly 9PM Saturday, so I’ve long had my last cup of coffee for the day. If you’d like, I can offer you a cup of green tea, a glass of soda or some water though. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been quite good with daytime temps most days around 22°C, sometimes higher. On Thursday, we did get a thunderstorm, which scares me.

If we were having coffee, I’d share that, as a result, I had no trouble meeting my movement goal on my Apple Watch each day. I went for walks each day. On Thursday, before the thunderstorm, I also actually rode the side-by-side bike for a little in the morning and then we cycled to Colmschate, a neighborhood of Deventer, the nearest city, in the afternoon. In total, I did 25km of cycling according to my Apple Watch. I reached double my movement goal that day.

If we were having coffee, next I’d say that, generally, Thursday was my best day of the week. I finally worked on a polymer clay project once again. The new student staff was being introduced to me so I decided to show her how I make a unicorn. I got distracted by the thunderstorm a lot, so the unicorn didn’t turn out as great as I’d hoped, but oh well.

If we were having coffee, I’d tell you that the rest of the week was a bit challenging. I’ve been struggling with attachment issues lately. I keep clinging to my “favorites” among the staff. I’ve decided I will discuss this with the behavior specialist when I’m having en appt with her and my mother-in-law on Tuesday, as it really needs to stop for my and the staff’s sake. I mean, I’m allowed to have preferences re staff I get along with, but my anxiety around them abandoning me and the resulting distress isn’t healthy and besides, it might just lead to that exact thing if they feel I’m too clingy.

If we were having coffee, finally I’d share that my spouse and I were trying to figure out ways for seeing each other over the weekend, since due to Pentecost all shops and lunchrooms are closed on Sunday and Monday. I finally came up with the idea of traveling to our house by ParaTransit on Monday. I haven’t been there since Christmas. It should really be cool.

Reminders When I’m Feeling Like Life Is Pointless

Posted on by Astrid

Hi everyone. Like I said on Saturday, I’ve been struggling lately. It’s been so bad that I’ve actually been considering talking to my doctor about options for medication. I mean, I’ve been tapering my antipsychotic aripiprazole (Abilify), which is sometimes used as adjuvant medication to treat depression. However, I honestly struggled with mild depression already before starting my taper.

That being said, I really need to remind myself of the things I have in life. For this reason, I started a list of positives and negatives for each day that I’ll send to my second assigned staff weekly. She is more socially adept and empathetic than my other assigned staff, which is why I have her to discuss my personal issues with. Anyway, I allow myself to list the negatives too, which sometimes outweigh the positives, but the last few days, the positives have outnumbered the negatives.

For instance, today I had as a positive the fact that I finished a pair of polymer clay earrings. Okay, I haven’t yet seen how they turned out, but who cares? The process is more important than the outcome. I also listed as a positive the fact that I had a good online meeting with the regional branch of CP Netherlands, the Dutch cerebral palsy alliance.

I listed one negative, ie. the fact that I got slightly stressed out when my male assigned staff asked me some questions about swimming. I’m supposed to go swimming in a group on Thursdays but this hasn’t happened yet due to staffing issues. I have tried to jump through all kinds of hoops to accommodate the staff and felt like I was being pushed around. Thankfully, tomorrow (Wednesday), it turns out, I’m allowed to try out swimming with my fellow clients.

I think that, when I’m in a downward spiral and particularly when I feel like my world is becoming smaller and smaller and life is pointless, I need to remind myself that there are still lots of things I can do even though I’m at home a lot. I could read, watch YouTube videos, blog, scroll on social media, do all kinds of crafts. Honestly, in fact, when a staff is entertaining, even a dice game can be enjoyable. And the entertaining factor is a two-way street. After all, I noticed this with a staff yesterday with whom I hadn’t gotten along a few weeks back. He was about as unengaging as could be and left 15 minutes early, but then again I treated him badly first by refusing to explain my routine because “it’s not my job to train temp workers”. It isn’t, technically speaking, but I could’ve been kinder. Yesterday, he actually made our game of Yahtzee fun.

I do still think my world could be enriched. I also feel this isn’t a cure-all for my depressed mood. Some of it comes down to grief, too. Grief for having lost the support I had in late 2021, when I was 95% sure I wanted to stay in Raalte. “Make that 98% please,” the manager said. Not even half a year later, it turned out, either she or some other people involved there were glad I was asking to leave. That angers and saddens me to this day, but wallowing in these feelings won’t help. Involving myself in positive activities might.

I’m joining #WWWhimsy.

#WeekendCoffeeShare (April 13, 2024)

Posted on by Astrid

Hi everyone. How have you been? I’m joining #WeekendCoffeeShare today. I’m writing this post in the afternoon on Saturday, but might not finish it until the evening as I’ll try to fully enjoy my one-on-one support time while there’s staff I get along with well in the home today. It’s a little warm for coffee, so if you’d like a cup of that, fine by me, but I could also offer you orange and tangerine-flavored Dubbelfrisss. I also should still have a couple Mars ice cream bars in the freezer. Let’s have a drink or ice cream and let’s catch up.

If we were having coffee (as I always say), first, I’d talk about the weather. It’s been on the warm side for April here. Last week Saturday, the daytime temperature even rose to 25°C. Yesterday and today, we got daytime highs of 21 and 22°C respectively. The rest of this week, the temps have been lower and we did get some rain. Next week, we’re supposed to get daytime temps barely above 10°C, which I don’t like. However, that’s probably closer to normal.

If we were having coffee, next I’d tell you all that I’m still going strong keeping up with my physical activity by walking everyday. So far, I’ve closed all three of my activity rings on my Apple Watch each day since the beginning of the month (and possibly a few days at the end of March too. I’m aiming for a perfect month with respect to my movement ring at least, which I haven’t had since last September.

If we were having coffee, I’d share that I finally got the long-awaited orthopedic shoes. They fit well, but the brace that’s in them doesn’t effectively help my really bad drop foot and as a result, the left shoe got noticeably damaged after only two fifteen-minute walks.

If we were having coffee, I’d tell you that, last Sunday, my spouse and I together worked on a polymer clay project. I’d proposed we create a unicorn, but my spouse came up with the idea of crafting a triceratops (“unicorn dino” with three horns) instead. It was fun, but definitely an exercise in letting go of my need for control.

Polymer Clay Triceratops

If we were having coffee, I’d tell you that the rest of the week was quite hard. I’ve been struggling with feeling quite depressed lately. I have been feeling like my world is becoming smaller and smaller with all the things I cannot do. It’s been more so on my mind lately given that many of my fellow residents are going on the home’s yearly week-long sleepaway camp at the end of the month and it’s not even been asked to me directly whether I wanted to go too. Rather, I overheard the staff talking about the camp a few months back and mumbled about it not appealing to me and that’s the end of it. I’m supposed to stick to my day schedule, which currently consists mostly of walking around institution grounds and playing dice games. Some staff say I might be able to be in the communal room more, but to be honest I don’t care about being in the communal room just sitting around.

Yesterday, I tried making a cheesecake with my assigned staff in the communal room but got overloaded by one of the other clients (who will stay here during the camp as well). It led me to spiral into a massive emotional outburst. After all, now everyone tells me I’ll never have a better life anywhere anyway so I’d better accept the life I have now. Why didn’t anyone tell me this two years ago? The answer is simple: at least some of the people at the care facility in Raalte secretly wanted to get rid of me. This is intensely saddening to me.

If we were having coffee, I would end on a positive note though by saying that one of the staff who told me to accept my life yesterday, offered to take me on a short car trip to Deventer this afternoon. We had a cup of coffee (I decided to buy both of ours) and walked around the marketplace, where the staff bought me a stroopwafel and I bought a small serving of garlic-filled olives.

March 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of the month, so it’s time for my monthly reflections. As usual, I’m joining #WBOYC.

This month was really tough. I started it with second-degree burns all over my left upper leg because of a self-harm incident the night of February 29. Thankfully, the wounds have completely healed, though last Tuesday, a staff who doesn’t come here regularly and hence saw my leg for the first time since it had happened, was a bit shocked anyway.

I have now been on my lower dose of Abilify, my antipsychotic, for a full month too, since I started that on March 1. I told my support coordinator that, for now, I’d like to remain on this dose and not go down further, even though it’s definitely not an ideal dose. Honestly, right now, I’m pretty sure it’s the least ideal dose I could be on, as I’m still experiencing daytime sleepiness but also significantly increased irritability. However, I don’t want to go back to my old dosage, which was causing more sleepiness, and I fear I might become unmanageable on a lower dose. We will re-evaluate in a month. Let’s hope the increased irritability is temporary.

Like I mentioned a few times over the past month, there was this horrible compensatory system, by which every minute I’d come out of my unsupported time in distress would have to be compensated for. It has caused me intense distress and was eventually revoked. However, I’m nowhere near my old self. Then again, my “old self” was lying in bed far too much.

Today, I got more bad news: my support coordinator is leaving in mid-April. I don’t know the other support coordinator, who will temporarily be coordinating the care for both sides of the home until a new support coordinator has been found and trained, that well, but she sounds okay. I do feel relieved that I’m no longer solely dependent on my male assigned staff but have a female one too. Okay, she only works one or two days a week, but at least she’s there.

Over the past week, the only positive I can report is that I’ve been able to walk more and, as a result, close all of my activity rings on my Apple Watch each day.

I didn’t create that much out of polymer clay. Honestly, the only thing I can think of having created this past month is an orange unicorn that I didn’t even feel like photographing. I tried my hand at earrings once, but ended up incorrectly explaining to my staff how to drill the hole into them, so I threw those away.

I did cook macaroni for my fellow clients once. I also went to the day center’s tiny gym room, but that was stupid. It only had strength training equipment other than a broken stationary bike and the strength training equipment couldn’t be adjusted.

I did read a lot, mostly children’s books about unicorns. I started in the Unicorn Academy series, which I love but unfortunately isn’t on Bookshare. I’m still debating whether I want to actually buy more of the series. I also have been reading foster care memoirs.

I only posted eight blog posts (I think), including this one. I will, however, aim to participate in the #AtoZChallenge in April. I don’t have a theme, but will go with random reflections. And yes, I have a topic picked for the letter X, in case that’s going to cause me to quit yet again.