#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.

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!

#WeekendCoffeeShare (February 24, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again this week. It’s the last Saturday of February and I honestly can’t wait for spring. How have you been? I’ve had my last cup of coffee for the day already, but I can still offer you something to drink if you’d like. Let’s catch up.

If we were having coffee, first I’d talk about the weather, as usual. I’m really disappointed in it this week. It’s been raining a lot and it’s been quite cold. On Thursday, another storm even raged by and management decided we weren’t allowed to go outside. This was in light of the situation in which a staff member died last December from being hit by a falling tree while going out in a storm. I want sunshine, for goodness’ sake!

If we were having coffee, then I’d tell you that obviously I haven’t been all that active lately. I think I only met my movement goal on my Apple Watch three times tops this week.

I might go swimming soon though. My assigned staff told me they found a spot for me to go into the pool on Thursdays. However, I’d need a staff to actually accompany me in the water, because I won’t be able to follow instructions when shouted from the side and there will be other clients in the pool too. If there’s no staff available who’s willing to come into the water with me, he said we could do fitness instead. There’s some gym equipment on grounds here, but there won’t be an instructor there. I’m fine with this, since I know how to work most equipment or my staff will be able to figure it out.

If we were having coffee, I’d share that I did have quite a productive week in the crafty department though. I made a polymer clay unicorn (yes, another one) on Tuesday. I didn’t do it fully independently, but that’s okay. I did add wings to this one, as well as Hotfix stones below each wing.

I also made a bird’s nest out of polymer clay on Thursday. That one is still waiting for more projects to join it so that I have more things to put into the oven together.

If we were having coffee, lastly I’d tell you that my support coordinator came back to me on Monday after talking to the behavior specialist. My emotional functioning won’t be re-assessed until June at the earliest and my day schedule won’t change until after the summer at the earliest. At the end of our discussion, she gave in on the day schedule and said she’d discuss it in the team meeting. I honestly don’t really care about the day schedule as much. I mean, it’s not perfect, but no day schedule is going to be perfect. What I do care about, is to lessen the chaos of my care. I mean, I know it’s better than it used to be at the intensive support home and I probably sound like a Very Hungry Caterpillar if I request more accommodations. I said as much to my support coordinator, but she tried to validate me by saying my attitude stems from my trauma.

The fact that there’s no designated one-on-one shift, however, has a lot of drawbacks and not just the fact that I get confused about who’s going to show up each support moment. It’s frustrating also because only the staff who works until handover, writes the day’s logs and those usually aren’t the staff members supporting me. I do, for this reason, notice a lot of irrelevant logging and, last Thursday, when I had a near-perfect day, there weren’t any notes at all. I think my staff probably hate me comparing my situation to the one in Raalte, but there, my designated one-on-one had fifteen minutes at the start of their shift to read the previous days’ log notes and fifteen minutes at the end to write up theirs. This meant I didn’t have to explain everything half a dozen times, like I do now. I also feel like having a designated shift would mean I could be much more clear on what I am going to do, lessening the mere talking and increasing the actual activity. I see why, if I keep rambling to a staff member for all of my activity time slot, they won’t want to spend another time slot with me, but I don’t like to spend all of my activity time rambling about the same issues either. The only reason I do is because I can’t count on getting it across.

#WeekendCoffeeShare (February 17, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. Like most times, I’ve already had my last cup of coffee for the day. I hope we still have apple and peach-flavored Dubbelfrisss, my favorite soft drink, though. We’re permitted a soft drink each evening as opposed to just on weekends as of this week, but I haven’t had it each day and I’m pretty sure I’m the only one who drinks this particular soft drink, so I’m optimistic there’s still some left. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first, I’d talk about the weather. It’s been a rainy but mild week. In fact, on Thursday (if I’m correct), the daytime temperature climbed to 15°C. Today was the best day of the week as far as it not raining goes, but we did get a few drops here and there.

If we were having coffee, I’d share that I taught myself and subsequently my staff a new dice game called Centennial. It is a welcome distraction from the usual Yahtzee. I have also been playing Mexican, which is supposedly a drinking game but it can be fun without the beer too.

If we were having coffee, I’d tell you that, on Thursday, I finished the first pair of polymer clay earrings I can actually wear. The previous pairs of earrings I created had been hooks, which I can’t yet wear due to not having had my ears pierced long enough. I finally found an easy-to-follow YouTube tutorial on how to embed earring posts into polymer clay. Even though I could only do a small part of the work myself, I am quite satisfied with the result. And, of course, I did create the original earrings myself. These are a simple design of leaf green Fimo ovals with gold Fimo liquid around the edges for decorating. In the future, I really hope to create more earrings.

If we were having coffee, I’d share that I rewrote my care plan together with my support coordinator. I’m still unsure as to what I think of it.

Particularly, I feel rather stressed out about the portion about my emotional functioning. I had an emotional developmental assessment done in 2018, which determined I function in most areas comparable to a child age 6-18 months. In some areas, it estimated my functioning to be much higher than I would estimate my own, such as in object permanence, while in others (such as handling unfamiliar material), it estimated me to function at a much lower level. I mentioned this to my support coordinator, who proposed the assessment be repeated. Since my one-on-one is largely based on my poor emotional functioning and the discrepancy between this and my IQ, this stresses me out. This especially since my assigned staff, who will likely be asked to complete the associated questionnaire, grossly overestimates my capabilities based on my verbal skills.

On a positive note, my previously assumed exact IQ score, which dates back to a test done in 1999, was finally removed. Yay, I am no longer 154. Instead, I am said to have an “above-average IQ”, which is more in line with a more recent IQ test (also a little dated, but at least not 25 years).

If we were having coffee, lastly I’d tell you all that, next week, I’ll finally be taking my next step in tapering my antipsychotic, Abilify. I took two tiny steps back in 2022, but remained at my current dosage ever since August of 2022 due to never having stabilized in the intensive support home. Now I’m not sure it’s the right time either, but then again I doubt it’ll ever be the right time, in that I’ll probably never be fully stable. I will go from 25mg to 20mg a day. I will stay on this new dosage for at least six weeks, unless of course I’ll spiral out of control to the point of necessitating we return to the old dosage. Wish me luck!

It’s Just Us, Or Is It?: Power Dynamics in Care

Posted on by Astrid

I am currently reading a book called The Dark Side of the Mind by Kerry Daynes, a memoir by a female forensic psychologist in the UK. In her first chapter, Daynes writes about how her college date tells her there’s no justice, it’s just us. Then she goes on to talk about her first job, which is really an unpaid position, at a correctional facility called Wakefield. There, the philosophy is “us vs. them”, “us” being the “good” guys (or girls), ie. the staff, and “them” the inmates, who often committed horrific crimes, such as rape, murder or both. This “us vs. them” mentality was often used to reinforce a rather exaggerated power dynamic, to say the least. As it turns out, it’s not that black-or-white, in that, several years later, a staff member Daynes worked with was given a long sentence for similar horrific crimes.

I want to use this example to talk about power dynamics. Not in the prison system, as I have no experience with that, but in the care system. In a sense, in care, at least as much so as in prison, there should not be “us” and “them”, since we’re all people first. The mere fact that I am disabled and my staff are currently non-disabled, shouldn’t make a difference. Neither should it when it comes to my fellow residents who are deemed unable to make their own decisions.

I just had a discussion with one of my staff about this. This person maintains that she’s in fact at my service, almost like I’m her employer. When I pointed out that she gets to decide when it’s necessary to physically drag me to my room (not that she personally ever has), she said this is because I live with nine other people. Yes, but if I lived with nine other people without staff, such as in student accommodation, no-one would be dragging me to my room for yelling and, if the situation did escalate too much, the police (who everyone except for maybe the police themself admits have a position of power) would be called.

I also mentioned some situations from the intensive support home. For example, staff grabbing a large cookie while giving us a tiny biscuit. “Who’s boss here?” one of the staff once actually asked one of my similarly opinionated but unfortunately less eloquent fellow residents. She named the names of the support coordinators. “And when they’re not here?”, he continued, clearly wanting to hear that the available staff are. I pointed out later that no-one is boss here, only to be told that this was a simplified way of explaining this to my fellow client.

When I told my current staff about this and other examples, I was told this is the way the intensive support home works and that she doesn’t agree with it. At the same time, she told me that, if I want a large cookie, I can get it because I’m capable of making my own decisions, while my fellow residents can’t. While I understand this, on a large scale, may be so, it isn’t necessarily true: I don’t technically follow my agreed-upon food plan either and that’s considered my responsibility, while if a fellow client points to a single extra cookie, that’s denied because their family (or the staff) agreed on a food plan. However, if I have an extra cookie, it will do the same for me as it will for another person (unless said cookie has allergens in it for the other person or whatever). I wanted to raise awareness of how, on a micro level, staff, including the staff who believe they’re at our service, are exercising their power more than they should be.

Power dynamics, for clarity’s sake, cannot easily be eradicated. Nor am I absolutely sure they should be. However, those in positions of power should be extra conscious of their position. And especially when it comes to situations in which they believe they have every rhight to make decisions for another person, such as when I got dragged to my room and when the staff decide another resident cannot have a large cookie (but said staff and I can).

What, When, Where, With Whom and What After That?

Posted on by Astrid

I have been struggling with staff randomly switching up who will support me, my day schedule being changed for various reasons, etc., a lot lately. This causes me a lot of stress. Like regular readers of this blog may know, I have about eight hours of one-on-one support a day, divided into blocks between 8:15AM and 9:30PM. Between my support moments, I have unsupported time slots that range in length between 30 and 45 minutes.

I often struggle with my unsupported time, looking at my watch every few minutes to see whether my support staff will be coming yet. I also look at my watch a lot during my supported times, because I dread the moment my staff unexpectedly say they’re leaving.

Last night, I thought up a way to possibly solve this issue: to organize my day schedule more by activity. We need to watch out this doesn’t become the stupidly vague day schedule my former support coordinator at the intensive support home gave me. After all, when the day schedule says that we’re going for a walk and doesn’t specify how long that walk will be and there are absolutely no timeframes related to the activity, some staff will take me for a three-minute walk around the home while others will take me for an hour-long walk. Then, if after the walk I’m supposed to have unsupported time until lunchtime, the length of my unsupported time could range anywhere from like 30 minutes to nearly an hour and a half. This was actually what my day schedule back at th e intensive support home was like.

What I’d like instead, is to know what, when, where, with whom and what after that. To put it more concretely, I’d like to discuss during my morning routine who will be supporting me for the rest of the morning shift (and after handover for the evening shift), what we’ll do, including what I’ll do during my unsupported times, and to put those activities on a tactile “picture” board (with Braille instead of pictures). I think knowing what I’ll do during my unsupported times will lessen the number of times I look at my watch too. It also will mean I know who’ll support me for my activities, so that I know whether I feel comfortable with them doing certain activities with me or not.

I’m pretty sure this is all wishful thinking. One of the staff, who happens to be one of my “favorites”, didn’t think it was a bad idea. Then again, my assigned staff said I was lucky that I heard 25 minutes in advance that he was going to be there for my early afternoon activity, because his shift doesn’t start till fifteen minutes before that activity starts and if it was up to him his morning shift colleague would’ve conferred with him prior to telling me that he was coming. That would mean I’d get at best ten minutes notice. According to my assigned staff, no-one specified how much preparation time I need, so technically speaking five minutes should be enough. I think that’s rather, well, literal-minded at best and purposefully twisting the truth at worst.

This post was a rather long contribution to this week’s Stream of Consciousness Saturday, for which the prompt today is “watch”. I usually don’t write pieces that are this lengthy and in fact struggled to maintain stream-of-consciousness style.

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.

December 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. I’m early sharing my end-of-the-month reflections, because I’ll share a review of the entire year tomorrow or on Sunday and I just now felt inspired to write. As usual, I’m linking up with #WBOYC.

The month started out pretty good with my new, pretty much ideal day schedule having taken effect. I did worry slightly that it’d be taken away if I didn’t spend my every two-hour activity time slot in the afternoon actually working with polymer clay or doing some other long activity. Thankfully, so far, it’s not been changed.

Also early in the month, I started acting out a bit because I got assigned a temp worker due to a staffing rearrangement. I started constantly comparing myself to a client who doesn’t need to deal with temp workers. Finally though, I calmed down and asked my assigned staff to write in my signaling plan that staff focus on validating my feelings and needs rather than feeding my comparison trap.

In mid-December, I went on the lights tour (I called it “Christmas lights tour”, but it wasn’t actually specifically Christmassy) around town. I loved it but had to agree with the staff that going without my one-on-one wouldn’t have been an option.

Christmas itself was okay but overwhelming. My spouse and I spent Christmas day at my parents’, where my sister and her family were too. Dinner was a lot better than I expected. However, both my spouse and I were overwhelmed by my nieces and my spouse might’ve contracted whatever illness my sister was carrying (COVID, possibly).

We spent the afternoon after Christmas at my in-laws having a Christmassy lunch. I went for an hour-long walk with my mother-in-law that day.

Like I mentioned last week, the storm last week caused one of my institution staff to be hit by a falling tree. She unfortunately died. This was quite a scary experience to many people here, so I for one at least hardly went for walks all week. I finally found out how to check for weather warnings today, so was able to go on a walk (two, in fact) again. Thankfully, the areas with lots of trees now cannot be entered anyway.

I have been slightly more creative than I used to be over the past month. Stilll not as creative as I’d like to be, but I’m getting better. Projects included another polymer clay unicorn, a butterfly and a pineapple charm. Also a dolphin which hardly anyone sees as a dolphin. The worst insult it’s gotten is that it’s a mouse.

Polymer Clay Dolphin

In the health department, I did okay. I did gain 2kg over this past month, all within the last two weeks. However, I am still within the weight range I agreed upon with my dietitian and on the upper end of a healthy BMI. I did resolve to lose those 2kg eventually though, but it doesn’t have to be in two weeks.

I do have some pain in my lower abdomen. No UTI and a bladder scan was normal too. I guess that’s a positive thing.

Another positive thing, which I almost forgot to mention, is the fact that my one-on-one got renewed. Not just that, but the hours the agency had asked for, were granted. This means my care for now will definitely not be decreased, like I had feared. After all, until the renewal, the agency was paying for some hours itself and that couldn’t have lasted. Thankfully, the Care Office granted the full number of hours requested.

Never a Perfect Day: Is It a Bad Attitude?

Posted on by Astrid

Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.

There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.

Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.