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.

Gratitude List (December 29, 2024) #TToT

Posted on by Astrid

Hi everyone. I’m doing a gratitude list again. As usual, I’m linking it up with Ten Things of Thankful. Here goes.

1. A nice Christmas-themed walk around institution grounds on Tuesday. We were able to see lights, listen to a barrel organ playing festive jingles and at the end of the walk, we could do some crafty things like decorate a clementine with cloves and create a paper rose.

2. The fact that the labeling tape I ordered online early in the week, actually arrived on time for my visit to my in-laws on Christmas (where I’d had it delivered) and the tape also fit into my home’s label printer. I as a result was finally able to label my new clay.

3. Fries. I always have to include several food-theemd thankfuls, don’t I? On Tuesday, we had French fries.

4. Seeing my spouse and in-laws on Christmas.

5. Making salad on Boxing Day. A student staff’s mother had made homemade Turkish-style meatballs called köfte.

6. Being able to play DJ at the home’s dance party on Friday. Another student staff had brought his large Bluetooth-enabled speaker and I asked him if I’d be allowed to connect it to my iPhone and be the DJ. That was so cool! At first, I played ABBA like I’d requested the staff do the previous time we had a party. Then I put on a random EDM playlist, but that wasn’t well-received, so I switched to my own personal playlist of Dutch and dialect songs.

7. Getting in lots of exercise minutes today. I took three longer walks.

8. The fact that my support coordinator reassured me that, pending my one-on-one renewal request, things will stay the same for now and no hours will be cut. Officially, my one-on-one needs renewing by January 1 and we haven’t heard anything yet. I’m still struggling with my current hours particularly in the evenings, so I really hope that things won’t get worse. We’ll see.

9. Meeting up with my spouse again yesterday. And looking forward to going to our house over New Year’s.

10. The fact that the festive season is almost over. I can’t stand all the chaos.

Things I Appreciate About My Current Care Home and the Care I Get

Posted on by Astrid

Hi everyone. I tend to lean towards pessimism about life in general and my care is no exception. However, I do feel that there are definitely positives about my current care home and the care I get. This evening, I’m struggling a bit with mistrust. It’s sometimes hard to realize that my staff truly want the best for me, but they do. For this reason, I’m using this post as an opportunity to share the things I appreciate about my care home and the care I receive.

1. My room. When moving here from the intensive support home, I was cautioned that my living space would be much smaller here. It is, but this I see as a positive rather than a negative. I only have one room as opposed to a separate living room and bedroom, but this means I can actually find all my belongings in one place. My room is large enough for all my stuff and this was something I hadn’t expected.

2. The lawn/yard adjacent to my room. I have a little terrace that I have a table and two chairs on, as well as a large lawn. I share it with the resident in the room next door, but she doesn’t use it at all.

3. The fact that I could choose the color for one of my walls. Okay, they didn’t have my favorite color, lilac, but I can’t see it anyway and my spouse, who can, thinks pink is much better.

4. My one-on-one support. It’s not perfect, but it’s as good as can be given the current circumstances. I have enough time for day activities.

5. The fact that staff don’t push me to be more independent than I can be. I had a pretty bad experience with this at the intensive support home. For example, staff would ask me why I was independent enough to climb over my fence during an outburst but not independent enough to tell the shampoo and shower gel apart when showering. As if these two are in any way similar! And even if they were, I’m autistic and struggle massively with executive dysfunction, as well as my energy level varying significantly from day to day.

6. The fact that the female support coordinator makes most decisions for me rather than the male one even though she is actually responsible for the other side of the home. I have had some issues with the male one, who isn’t the most socially adept, and I’m so glad they were able to make a working arrangement.

7. The fact that I get female staff for my personal care all the time. I’ve always made it very clear that I don’t feel comfortable with males helping me with this. However, at the intensive support home, I was often told I either could accept the male staff or figure out a way to do said task independently, even when there were female staff available.

8. The fact that staff have agreed not to assign me unfamiliar temp workers unless absolutely necessary. At least, that’s how most staff have explained it to me. The male support coordinator corrected me when I said I’m happy that as a general rule I won’t get unfamiliar temp workers, so now I’m not sure whether I was too optimistic. It’s still early days too, but I’m trying to be grateful.

9. My two assigned staff. Both are female, one being in her sixties and quite experienced and the other a young student staff who however has a lot of knowledge. They both have my best interest in mind.

10. My signaling plan. A signaling plan is a plan that details the various phases of alertness or emotional stability in order for everyone to help the client prevent emotional outbursts or other states of over- or under-alertness. My support coordinator at the intensive support home had herself changed mine without my knowledge or consent. Thankfully, I was able to retrieve the one I had in Raalte and we were able to build a new plan based off that.

11. The fact that, if I have concerns, I can E-mail my assigned staff and support coordinator and they’ll take my concerns seriously.

12. The fact that my fellow clients are a lot less disruptive than the ones at the intensive support home. I still experience overload from the sounds my fellow residents make at times, but it’s manageable.

13. The fact that I won’t be kicked out of here. I’m not entirely convinced of this yet – no, scratch that, I’m not convinced of it at all -, but at least so far my staff are saying they’re happy I’m here.

I’m linking this post up with Thursday Thirteen.

Attention Is a Valid Human Need

Posted on by Astrid

Hi everyone. One of the prompts for this week’s Writer’s Workshop is to write a post based on the word “attention”.

This immediately brings back a flood of memories of my time at the intensive support home. On one particular occasion – but I’m pretty sure there were many more -, a staff said to her coworker about a client in crisis: “It’s all attention.” She said “attention” in English, not Dutch, apparently hoping the client in crisis or his fellow clients (including me) wouldn’t understand. One of my fellow clients immediately chimed in by translating her comment into Dutch.

The idea that challenging behavior is “for attention” is often not entirely based in truth. However, even if it is, attention is a valid human need. And especially at the intensive support home, clients routinely didn’t get it.

You might think we did get more than enough attention, since the staff/client ratio is 1:2 to 1:3 at this home. But more often than not, staff were doing stuff on their phones, chatting to each other and on at least one occasion, I caught two staff playing a board game together and the third cheering for them. That third person was my one-on-one for the moment, but, because I was also playing a game with a fellow client, the staff thought it not necessary to pay attention to me. Then when I started showing signs of distress, he missed them until I ended up in a meltdown, then told me I could’ve said in a calm voice that I wanted to go to my room. Well, guess what? One of my first signs of distress is an inability to communicate effectively.

On another occasion, the fellow client about whom the staff felt the need to communicate his “attention-seeking” in English, was having an outburst again. I told my one-on-one for the moment that I could see why, because he’d been left to his own resources, often locked in his room, for most of the day. My one-on-one told me he’d had more than enough attention, since he had been having a cup of coffee with the client and had created his day schedule. As if a fifteen-minute coffee chat means you can be left alone for the rest of the day.

Remember, I and my fellow clients have a developmental disability. Most of us cannot participate in everyday conversations among non-disabled people, so when the staff are chatting to each other, most of us will feel left out of the loop. And just because staff are in the same room with us, doesn’t mean they’re attending to our needs, as my example of the board game illustrates. At that point, I needed someone to pay attention to the subtle signs that I was going to land in a meltdown.

And like I said, attention is a normal human need. Staff aren’t telling each other that they’ve had more than enough attention because they’ve had a break (that usually lasts for 45 minutes, four times a day) together. In my opinion, honestly, they should.

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 (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.

Worries

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is about worries. What worries you about the future?

Unlike Sadje, I mostly have personal worries occupying my mind. Most of them also aren’t long-term. I mean, I do sometimes worry that the sweet and high-fat foods I consume today will lead to an untimely death ten or twenty years from now, but that worry isn’t as all-consuming as my worries about the next few weeks, months or the next year. I joke that, in 2034, everything will be okay. I got that from the book titled 2034, which I still haven’t read and is about World War III erupting that same year. I think it’s more likely that World War III is going to break out that year than that the care system will be any closer to ideal. However, in reality, I can’t look that far into the future, so I know I should care, but really I don’t.

This is probably the same reason the state of the planet doesn’t keep me up at night. That is, except when I read a news article detailing that the magical 1.5 degrees of warming have been hit in some parts of the world in 2023. Then I did worry: will the planet catch fire (not even sure whether I’m talking hyperbolically with all the wildfires we’ve had) next year?

Still, most of my worries concern my personal life. That doesn’t mean the news doesn’t effect me, but it only does when I think it relates to me personally. For instance, when I read that policy makers were talking about reintroducing 24-hour diapering for elderly people who can still use the bathroom but need assistance with it, I was intensely worried. It was said in the same article that the phrase I repeat many times over and over again when talking about my care was: “It’s better to have reasonably good care for two people than excellent care for one person.” Did they mean me? Was my care, with (at the time) nine hours of one-on-one a day, “excellent”? Apparently, because now I have just seven. But I’m still worried they mean me. After all, I still cost considerable money (far more than elderly people needing an hourly assisted bathroom break) and aren’t sedatives cheaper than one-on-one, just like diapers are cheaper than nursing assistants?

It isn’t really a clear thing I do worry about though. I mean, yes, I do worry about my care being cut, but then again, I can’t look far into the future. When I try, I’m always wrong on so many levels. So they remain mostly vague worries that keep me up at night.

Sometimes though, like recently, they’ve been more short-term, concrete things that worried me, such as over the past week the fact that my support coordinator, behavior specialist and intellectual disability physician had a meeting on Friday. The positive news is that the explicit compensatory system, by which every minute I’d come out of my unsupported time in distress had to be compensated for at my next one-on-one moment, was discontinued. Rather, from now on, staff will again discuss with me once I’m calm whether they can come back at a later time for my next support moment since they needed to spend more time on me. I am so happy I no longer have the compensatory system hanging over my head, even though some staff said the end result would be the same. I don’t care about the end result (which, by the way, will probably mean I’ll need slightly less support, honestly); I care that this makes me feel much more comfortable.

#WeekendCoffeeShare (March 16, 2024)

Posted on by Astrid

Hi everyone. Oh my, I don’t think I’ve ever gone this long without blogging since starting this blog, have I? I’m really struggling and today, I don’t really want to do a gratitude post, so a regular #WeekendCoffeeShare will have to do. I’ve long had my last cup of coffee for the day, since it’s 9:30PM. I’ve also had my soft drink, Dubbelfrisss. I’m afraid I’ve only got water to offer you now, but oh well. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that my burns, which I told you about in my post last week, are almost completely healed. I no longer need them dressed and just need a cream put on them to keep the skin from getting too dry. As a result, I’ve been able to walk regularly again too, meeting my movement goal on my Apple Watch each day this week except today so far.

If we were having coffee, I’d tell you that I had a really rough week this week otherwise. I’ve really been struggling with the fact that staff are to adhere strictly to my day schedule and to make up for every minute I come out of my unsupported time in distress by showing up at my next support moment later. The fact that it’s literally by the minute, wasn’t a misinterpretation, it turned out today when I talked to my support coordinator. It’s been causing me intense distress though, which has gotten me to send staff away with ther “freakin’ stopwatch”, even though when I’m in severe distress staff are supposed to stay with me (and I’m usually open to them making up for it later on when I’m calm). The compensatory system (staff having to make up for every minute of extra support minutes) only applies when I’m in distress and not when I need support during wound care or a pedicure or whatever. The reason, it turned out, is the fact that I’ve been needing more suppport lately and the staff fear my one-on-one will need to be increased, which they say they don’t mind for their own sake (assuming it gets approved) but would think is a pity for me. They seem to think, but I wasn’t to look at it that way, that my distress is attention-seeking.

Honestly, I can see their point, in that I’ve needed more support lately, but my care needs fluctuate and will probably go down again. Besides, they never write it down when I agree staff can leave at 5:15PM rather than 5:30PM to put their pizza in the oven, when I have a lie down for 30 minutes during my one-on-one or whatever, essentially cutting my one-on-one back. I don’t care about those 15-30 minutes, but staff have agreed to cut back on my support if I’m even a few minutes in distress outside of my one-on-one. And it’s not because they have other duties, because like I said if I have a 30-minute pedicure, that doesn’t get compensated for. It’s essentially to encourage “crying it out”, which has actually had the opposite effect.

Like I said, once I’ve calmed down, I’m quite open to staff having to compensate for the extra time they’ve spent with me, because I can see they need to attend to the other clients too. However, having this compensatory system hanging over me and it being strictly by the minute, causes me even more severe distress. I’ve also been ruminating over it at night, leading to night-time agitation and the night staff needing to come out to me. Wednesday night, they even had to come out to me three times. After that, I now have a PRN sleeping pill until Monday per my and my mother-in-law’s request. I only took it Thursday night. It’s a short-acting benzodiazepine, which had a slight effect when I took it. However, I honestly feel I should be able to cope without it now.

If we were having coffee, I’d share that I was two weeks on my new, decreased antipsychotic dosage yesterday and feel a lot more alert. According to my former mental health agency, the first two weeks don’t count with respect to behavior and honestly I’m noticing I’m slightly less irritable than I was until Wednesday. It might have been a night of relatively restful sleep or it might’ve been the fact that the staff who worked over the past few days weren’t stopwatch people. I certainly don’t want to go back on my old dosage.

If we were having coffee, I’d end on a positive note by telling you that my mother-in-law visited me on Tuesday. She was able to bring me the package of crafting supplies I’d ordered a few weeks ago. I ordered a few clear stamps (to be used with polymer clay in my case), a mold for polymer clay, precision paintbrushes and a couple of earring cutters.

Gratitude List (March 9, 2024) #TToT

Posted on by Astrid

Hi everyone. This past week has been tough. I was going to write an update only to realize there’s no #WeekendCoffeeShare this week. I could do one on my own, but that’d just leave room for endless negativity. Instead, for this reason, I’m going to turn things around and do a gratitude post. As usual, I’m joining Ten Things of Thankful. I’m going to cheat a little and do this gratitude list for the past ten days so that I can provide a little update anyway.

1. I’m grateful for the night nurse on duty during the night of February 29/March 1. Like I said on February 29, I was intensely triggered by my intake interview for therapy. Though I tried to calm myself down, it didn’t work and I ended up self-harming after my staff had left by throwing boiling hot water over my leg. Thanks to the night staff and particularly the night nurse, who cooled the wound under the shower for over half an hour, I am left with superficial second-degree burns. The wounds still cover most of the front side of my upper leg, but I realize things could’ve been a lot worse.

2. I am grateful my wounds are healing as well as can be expected. I’m getting them dressed once a day now, which is frustrating and sometimes very painful. I looked up my kind of burn (that’s how I found out there are two kinds of second-degree burns) and it usually heals within two weeks. Yay!

3. I am grateful for French fries on Sunday. As I couldn’t walk on Sunday (or most of this week, for that matter) because the band-aid that was on my leg would fall off if I did, I decided that my spouse shouldn’t come by for a visit. Instead, my staff took me to the institution cafeteria in a wheelchair to have fries and some snacks. They were delicious!

4. I am grateful for nice weather last week Sunday as well as over the past couple days. Last Sunday, the daytime temperature rose to 15°C. When having the fries I mentioned above, we sat in the cafeteria yard.

5. I am grateful I am feeling slightly better mentally. I definitely hit rock bottom on February 29 and from that place, you can only go up. I will have to see how things work out in the long run, as the behavior specialist is going to try to talk to the therapist I met on Feb 29 to see whether any changes to the plan need to be made. Though I’m ready to give it a try, particularly the thought of doing the therapy without the support of my staff, feels overwhelming.

6. I am grateful that my support coordinator listened to me when discussing the outcome of the monthly team meeting with me. The team meeting was on Monday and, though I had already asked that some things would be discussed, such as my day schedule, my self-harm made things a priority. The day schedule isn’t changing, as I expected, but I honestly don’t mind as much.

Initially, in the team meeting, the staff had agreed to stick with announcing staff switches half an hour in advance. I was really disappointed. Though I understand the staff don’t want to designate a one-on-one shift, I feel it will help me immensely if I know more in advance who’s going to support me for my activity slots. I am grateful my support coordinator reluctantly agreed to this.

7. I am grateful my support coordinator reassured me that she and the behavior specialist at least aren’t planning on asking for less one-on-one for me anytime soon. Of course, they aren’t the ones making those decisions, but then again neither is the therapist I met last week.

8. I am grateful I did manage a few crafty endeavors over the past week. Not as many as I’d hoped, but I did craft yet another polymer clay unicorn, as well as finally making the crocodile I’d promised one of the male staff here. He actually helped me make it. It’s maybe a little too cute, but oh well.

Polymer Clay Crocodile

9. I am grateful my spouse came by for a visit today. We sat in my room talking, playing a card game and such, as I still didn’t feel comfortable going out.

10. I am grateful for the few short (as in, fifteen minutes tops) walks I did manage over the past few days. It’s been a pain f(sometimes literally) inding the right band-aids and other things to go over the wound. Let’s hope Dr. Google is right and my wound heals within the expected timeframe of two weeks.