March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

2024: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year and this means doing a review of the past year. I realize I wrote about my 2024 on Saturday already, but I’d like to do a proper review today.

The year started out pretty tough, because I had some issues with my assigned staff, now this side of the home’s support coordinator. I won’t go into detail, but let’s just say he isn’t the most socially adept and his attempts at gaining my trust went horribly wrong. This is the reason he isn’t the one making decisions for me or having meetings with me about my care.

I have had some issues with getting proper care over the past year in general, like when the behavior specialist decided to do the minute-by-minute compensatory system when I was in distress during my time without one-on-one. The reason was the idea that I would need more and more care if they didn’t do this. That is, that’s what my then support coordinator said, but I figured out that the actual reason was the idea that I’d purposefully work myself up in order to get more care. This is simply not true: I pretty regularly tell my staff that they can leave early if I’m doing well, but I just can’t plan my distress to suit my one-on-one hours.

Over the summer, I had some issues with the fact that there were especially many unfamiliar temp workers assigned to my one-on-one care. I mean, I realize that there are more temp workers over the summer when the regular staff are on vacation, but the fact that most of them were assigned to me, frustrated me.

There have been other frustrating aspects to my care, but I’m so glad my support coordinator and two new assigned staff are trying to build a trust-based relationship with me rather than telling me I’m just a negative nagger.

In other departments, the year was a mixed bag too. I definitely didn’t do as well as I’d hoped with my movement, crafting or blogging. In fact, I honestly did worse than I did last year. I did, however, try cooking and baking more often.

Another positive is the fact that I am fully off my PRN tranquilizer and my topiramate and am now on a significantly lower dosage of aripiprazole (my antipsychotic) than I was last year. I also started therapy. First, I tried play therapy, but that wasn’t a success from the get-go. I now am in the early stages of movement therapy based on the Sherborne method.

In general, when I look back at 2024 and compare it to 2023, I can see how in some ways I did worse this year. This feels a bit disappointing and I’m not sure why it is. It may be because of my having significantly tapered my medication. I hope that whether this is the case or not, it won’t get worse in 2025.

That being said, I do feel that I’m starting to develop a tiny bit of trust in my staff and that wasn’t the case in 2023 at all. Here’s hoping I can continue on this journey next year.

This year was a true year of ups and downs in other areas, such as my marriage, too. Thankfully, I’m feeling optimistic that my spouse and I will make it through stronger. We’re both confident that we’ll always be soulmates!

In the health department, I did okay. I gained a little weight, but not so much that it’s worrisome to my dietitian. I remember telling her recently that I hadn’t gained weight last year over the holiday season, but I’m pretty sure that wasn’t correct. As such, I hope that, if I’ve gained weight over this holiday season, I can lose it again.

One last positive: I finally got suitable orthopedic shoes, yay! They still get damage often due to my drop foot, but thankfully not to the point that they can’t be fixed.

My 2024 #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “my year”. I don’t usually review my year until December 30 or 31 and, since this post is supposed to be stream-of-consciousness, I cannot do it now either. That being said, I can write down what my year reminds me of.

I am first reminded of the fact that I’ve been tapering my medication since the beginning of the year and am now 10mg down with my antipsychotic and completely off my topiramate. The taper could’ve gone faster had I not landed in crisis just before my first antipsychotic taper and had the behavior specialist not subsequently decided to do the “minute-effing”, by which I would have to compensate for every minute I was in distress during my unsupported time by having less support at my next moment.

The year also reminds me of my continual attempts to get actually reasonably good care, after that system of minute-by-minute compensating was abandoned in late March. I sometimes feel like I could’ve come across like a very hungry caterpillar, but so what? I don’t purposefully experience distress, as the powers-that-be used to think.

I’m also reminded that this is the first full year since 2021 that I didn’t move. Back in 2021, I told my care plan review that I was 95% sure that I wanted to stay in Raalte, but hardly a year after that, I was gone. I resolve for 2025 not to repeat the same mistake.

Overall, 2024 started tough but things have improved ever since. I can’t go into every detail of what I was struggling with in early 2024 and let me just hope and pray that 2025 won’t be the same. That is, improvement is always welcome, of course, but let’s hope and pray that early 2025 won’t bring a setback.

Everything Will Be Okay… #SoCS

Posted on by Astrid

This week’s prompt for Stream of Consciousness Saturday is “wish”. What a timely prompt, as we look back at 2024 and look forward to 2025. I don’t usually have any new year’s resolutions, like I say. Rather, I call them “hopes”. They’re just the same, like I say every year, but calling them hopes rather than resolutions gives me an excuse not to think about them again until the end of the year. Then, if I didn’t make any happen, I could say they were just hopes. Like wishes, they feel a bit devoid of reality sometimes.

I mean, for 2025, most people could wish for world peace. Not gonna happen, baby! In fact, as I read the news recently, I’m more and more scared that even in a country that hasn’t been at war in almost 80 years, we won’t see a full year of peace.

And now I’m scared that by voicing that fear, I’m single-handedly making it happen. That’s my twisted mind playing tricks on me though.

I do wish for there to be many more years in which this country can live in peace. I know that, in a similar way to what I said in my previous paragraph, my constantly saying that “everything will be okay in 2034”, when the “2034” aspect of it was based in a twisted way on the idea that World War III will start then, might be tempting fate. Thankfully, I don’t believe in manifesting in this sense. Besides, don’t many faiths believe in reversal of good and bad? Like, in the Christian tradition, there’s this thing about the first who will be last. Either way, I hope and wish that my twisted words about 2034 will indeed be true and everything will be okay.

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.

February 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. I’m sharing this past month’s reflections again, as it’s the last day of the month. February is often a hard month for me and this year was no exception. I honestly feel quite hopeless as I write this post, even though I probably should be feeling cautiously optimistic. Let’s dive in. As usual, I’m linking up with #WBOYC.

During the first few weeks of the month, I shared some more concretely about things I wish would change about my care here at my current care home, only to be told nothing will change until after the summer at least. This caused me quite a bit of despair, honestly.

The contrast couldn’t be greater when I did experience exactly one near-perfect day last week and saw nothing about it in the staff’s records. When telling my staff about this, I got advised that maybe reading the log notes might not be a good idea after all. WTF?

It also looks like my staff are using my current mistrust, and the fact that I’ll likely develop trust in my staff very slowly, as an excuse not to have to improve my care. After all, yesterday my assigned staff said my level of trust is currently zero so any improvement is to be celebrated when I was calling him out on ways in which he and his coworkers are expecting too much of me.

Today, I had the intake interview for therapy at my care agency’s practice. I probably portrayed myself as an attention-seeking, childish, purposefully-dependent monster. The therapist who asked me the questions (there were two in the room, plus my home’s behavior specialist), kept repeating how feeling isn’t dangerous.

At one point, I was talking about how I sometimes trigger myself by looking up idealized care situations. She was like: “But you don’t need full-time one-on-one.”. I know. Then she went on to tell me that sometimes she feels bored and lonely when she’s at home alone, but nothing bad happens so she can stay home alone. She also told me I’m an adult. This somehow majorly triggered me and now I feel bad for being triggered because doesn’t that prove my former psychologist’s point of view? You know, the one who diagnosed me with dependent personality disorder and told me I needed a good kick in the behind to live independently?

Yet things did happen. I dropped my meds. I dropped glass on the floor. I fell of a kitchen stool. The housing association came by and told me I needed to pull away the weeds out of my backdoor path. And a thousand other things. None of these are serious things, except that I had no idea how to handle them so spiraled into panic. And there’s no point teaching me how to handle every tiny little situation that could go wrong. And for the record, sitting with the feelings won’t solve the problems either. Calling for help rather than spiraling into panic might have, but that didn’t seem to be her point. Besides, I cannot do that when I’m in a panic.

She did say that she doesn’t make decisions about my independence, but I feel very strongly like I am being asked to be the strong, independent, intellectual part of myself again.

The therapists ended up recommending a form of play therapy, but the play therapist who comes to the main institution is male and I’ll be alone with him. That’s not an option for me, honestly. They are going to look into finding me a female therapist. I hope they will, as the rest of what they recommended, though I did agree to go forward with it and have my first appt on April 3, seems a bit off. They recommended psychoeducation on emotions, which seemed to me a bit like dialectical behavior therapy light (I’d mentioned I’d done DBT unsuccessfully). They’ll also help me identify my triggers and make a timeline of significant life events or something. I’m not sure what relevance that would have, but oh well.

Currently, I’m trying to talk myself into being positive. This care home clearly won’t improve, so either I improve or my life stays the same. Which is mediocre. I do have my good days, but I’m pretty sure the staff are going to agree at the next team meeting that the staff’s less optimal care approach should be the default.

On my good days this past month, I did craft some earrings, a polymer clay unicorn and bird’s nest, as well as make delicious homemade chocolate fudge. This was awesome!

January 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of January, so I’m reflecting back on the past month. This month was rather eventful but slow-going at the same time. Christmas sounds like centuries ago. As usual, for my monthly reflections, I’m linking up with What’s Been on Your Calendar? (#WBOYC).

The month started out rather positively with me being full of energy, new hope and inspiration. Indeed, I did create some cool new polymer clay things over the past month, including a Valentine’s frog. That one now stands on a Valentine’s Day-themed (well, kind of) table in the living room of the other side of the home.

Polymer Clay Valentines Day Frog

I also crafted the cat I showed you all earlier, a penguin, a rabbit and a few things that I might be turning into earrings at some point.

Last week, I also cooked rice and chicken for myself and my fellow residents. This was great.

Early in the month, I didn’t have many visitors due to various circumstances, but thankfully I was able to see my spouse twice this month anyway. I also saw my mother-in-law twice, on the 16th because it was every-other-Tuesday (we’d skipped the 2nd because I was sick) and last Monday because I had my care plan review.

This care plan review probably warrants its own post, since it was a lot to process. Midway through the month some issues that I’ve been having with my assigned staff, that I can’t go into here, came to a point where I was greatly struggling too. This and some other things, including the fact that I frankly don’t do as well with male staff as I do with female staff, have led me to request another assigned staff. Whether this can happen, I’m not yet sure of, but I hope so. Thankfully, I do have my support coordinator, with whom I do get along.

A week and a half ago, she and I finally finished my new crisis signaling plan. This has yet to be brought under the attention of all staff and even then, staff have to be willing to follow it.

Last week, a staff not being willing to follow this plan, led to me having a massive meltdown. More specifically, I spiraled out of control because the staff assigned me a temp worker for the late shift, while that entire day there were no staff I sort of trust except for one and she, contrary to what’s in my plan, refused to come over for just five minutes. I was a horrible person to her and the other staff and there’s no justifying that, but it’s sad to realize that her coming over for just five minutes might’ve prevented an evening-long meltdown.

Over the past week, I’ve generally been struggling with all the staff changes, changes to my one-on-one for various reasons and general chaos. I feel, truthfully, like I’m swimming in the North Sea again, as I explained it at my care plan review. The way I explained it then, when I was in Raalte in late 2021, it was like swimming at the shallow end of the pool as far as support went. And, while, like every toddler that needs to learn to swim having their days when they resist the water, I had my bad days, they weren’t due to poor support. Then, the first male staff and, later, some temp workers were introduced to me and I had to endure the odd day when I didn’t get my allocated one-on-one. I struggled massively with this challenge and this was the main reason I decided to move. Then, at the intensive support home, I was thrown right into the Pacific Ocean: a day schedule that was rather stupid, constant staff changes, me always being assigned the new temp worker, etc. Now, on good days, I feel like I’m swimming in a calm lake and, on bad days, I feel like I’m swimming in the North Sea. And then there are those really good days when I feel like I’m back in the pool. Those are the days I’m supported by my “favorites”, as my assigned staff calls them. And just so you know, just because I survived my previous home, doesn’t mean I coped or can cope with the current chaos of my home. Yes, it’s better than it was, but that doesn’t mean it’s good. I try to be understanding of the fact that everyone faces staff shortages, temp workers, etc., but honestly, listening to all the “everyone has to give a little” wears me down.

The Wednesday Hodgepodge (January 3, 2024)

Posted on by Astrid

Hi everyone. It’s Wednesday, so I’m back joining the Wednesday Hodgepodge. I love this week’s questions, even though I’m pretty sure most came along during the first Hodgepodge of 2023 too. Here goes.

1. Every January 1st since 1976 Lake Superior University has published a list of words they’d like to see banished from the Queen’s English. Words may be banished due to misuse, overuse or just general uselessness. Here are the words/phrases they’d like to see banished in 2024-
hack, impact, at the end of the day, rizz, slay, iconic, cringe worthy, obsessed, side hustle, wait for it
Which of these words/phrases would you most like to see banished from everyday speech and why? Are any of these a regular part of your speech? Is there a word not on the list that you’d like to add?
I don’t care for the term “side hustle”. Other than that, I don’t really think any of these words/phrases are particularly cringe worthy (pun intended). I do use “at the end of the day”, but not any others out of this list. That doesn’t mean I don’t misuse or overuse words a lot. Think “particularly” above.

2. What do you wish you’d done more of last year? Less of?
More of: writing, both on my blog and in my journal.
Less of: worrying.

3. A place you’d like to visit in this new year? Do you think you will?
I really don’t know. I have no travel plans and actually don’t care for vacations.

4. What are three words to sum up or describe your 2023?
Emotional, stressful, hopeful.

5. What advice would you like to give yourself as we begin a new year?
Be open to the possibilities that come your way.

6. Insert your own random thought here.
I have been trying out the WordPress block editor, because I wanted to participate in #Bloganuary. So far, it’s still quite the learning curve and I’m happy the classic editor is still available. In fact, I doubt I’ll move over to the block editor full-time anytime unless I’m forced to. However, I’m glad the two posts I wrote using the block editor haven’t been ruined (yet) or disappeared altogether, like happened to some I did several years ago.

My Hopes for 2024

Posted on by Astrid

Hi everyone. As regular readers of my blog know, I don’t do New Year’s resolutions, instead calling them “hopes”. This is just an excuse not to have to take responsibility, I guess, but oh well. I love writing them and looking back at them after a year to see how well I did. Last year, I did participate in #WBOYC, of course, but honestly I never looked at my hopes for 2023 when doing my monthly reflections. Oh well, maybe my first not-quite-resolution has to be to look back at this post when reflecting on the month. Here goes.

1. Get back on track with respect to healthy’ish eating. I did manage to get to a healthy BMI in 2023. That is, I’m pretty sure with all the New Year’s treats, including more “oliebollen” than I told my dietitian I liked, I’m now back across the line to overweight (I was only half a pound below that line last week). I know that with some cutting back on snacking, and it doesn’t even have to be drastic, I can lose the excessive pounds I gained over the holidays. More importantly though, for the remainder of the year, I’d like to maintain a relatively healthy diet. After all, sugary ttreats and high-fat foods are bad for you even if you’re at a healthy BMI.

2. Get back into a regular movement routine. Though I did excellent for the first half of 2023 and pretty well for most of the second half too, like I said yesterday, I wasn’t moving as much over the past month or two as I would’ve wanted to. This year, I obviously hope to meet my movement goal each day, but I’m not sure that will be a realistic goal, as it wasn’t in 2023 and that’s not just because of lack of motivation. I’d also really like to find another way of exercising besides walking, either swimming again or something else. I seem to remember we do have gym equipment somewhere on institution grounds, so maybe that’s an option.

3. Write more regularly. Last year really sucked in the blogging department. I really hope to change that and get back on track with blogging more often.

4. Broaden my horizons in the crafty department. I hardly touched on this yesterday, but the last couple of months were really positive in this respect. For one thing, I started creating figures, such as the gnome and Santa, without consulting YouTube tutorials. For another, on Saturday, I did something really cool: I crafted a unicorn completely independently! I did initially leave black streaks on the head from touching it while trying to attach the eyes, which the staff had to clean up with alcohol. Other than that, I did everything completely without supervision or help.

In 2024, I really hope to be more creative, try out more things on my own (without the expectation that I’ll lose my one-on-one) and generally have more fun claying and maybe doing other crafty things.

5. Explore other day activities. In 2023, I wanted to expand my horizons with respect to my day schedule, moving beyond 60 minutes at a time, beyond my room and beyond one-on-one. The first was a massive success, as I now have a great day schedule (which of course took me moving out of the home I lived in last year, but oh well). The second and third, I’m not 100% sure I want to achieve, actually. Rather, I’d like to explore meaningful activities, whether these can be done in my room or elsewhere, on my own, with my one-on-one or in a group.

6. Get settled into my current care home, generally. I really hope to get more comfortable here and start building up a trust-based relationship with some staff.

7. Improve in the mental health department. This, for me, means stabilizing with respect to my trauma-related symptoms. It also means getting closer to a proper med combo and dosage. In 2023, I didn’t change any of my meds or dosages, which was frustrating as I did notice some increase in possible side effects. I’ll have a meeting with the intellectual disability physician to discuss my meds on the 15th.

8. Continue to work on my relationships and supporting the people I love. Particularly, my marriage evolved in a positive way in 2023 and I would really love to keep it as strong as it is going forward.

What are your hopes for this year?