#WeekendCoffeeShare (May 18, 2024)

Posted on by Astrid

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

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

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

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

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

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

Vignettes About Unicorns

Posted on by Astrid

Hi everyone. Today I’m joining Writer’s Workshop. One of the prompts is to share at least five moments of your life (not events, but merely vignettes) that are somehow related. I, for some reason, was immediately drawn to the theme of unicorns. Let’s see what I can come up with.

1. I remember having a unicorn My Little Pony figurine as a child. In fact, that’s a lie, as I think it was my sister’s, but I loved her anyway. In my memory, she was light purple, but I could’ve misremembered that, since my favorite color is lilac.

2. Last October (I think), I got a unicorn soft toy from my spouse as a thank-you gift for my support throughout our relationship and particularly over the past several months.

3. The other two unicorn soft toys on my bed, I bought at the fall fair here on institution grounds last October too.

4. Which reminds me, I have a lonely unicorn soft toy sitting in the soft toy cabinet. I got that one for Christmas at the last day center I attended while living with my spouse.

5. Oh wait, no, I have another unicorn soft toy in the cabinet. I got that one when leaving the care facility in Raalte for the intensive support home. Oh, how I miss being in Raalte still.

6. Now enough with the soft toys. The first unicorn I created, in July of 2021, I did entirely from a YouTube tutorial. I gave it to my spouse, who probably still has it.

7. I remember crafting my first unicorn at the intensive support home with my assigned staff. It didn’t turn out as good as I’d liked, but it was okay.

8. I gifted her my best unicorn I created while there when I left. Too bad she ignores me now…

9. When I left the intensive support home, I gifted each of my fellow residents a small cutter-created polymer clay unicorn.

10. I used for it a cutter I’d gotten for my birthday last year from my parents. My spouse had also gifted me unicorn-themed cutters at some point, which I originally intended to use.

11. I read my first unicorn-themed book a few years ago. That is, I probably read some in childhood too but not sure since they weren’t as popular as they are now. The book was a short picture book called First Day of Unicorn School.

12. My current unicorn-related read is the second book in the Unicorn Academy series by Julie Sykes. Oh wait, that’s not exactly a memory I’m sharing…

13. I can’t remember when I started calling my spouse “head unicorn catcher”. The reason is the fact that my spouse’s truck route is named after a city which has the unicorn as its symbol. Oh wait, that wasn’t really a memory either.

But I got to thirteen. So I’m allowed to share this post with Thursday Thirteen too. So if my post doesn’t meet the criteria for Writer’s Workshop, at least it meets the criteria for that.

#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.

Creativity: How I Have Evolved As a Creative Over the Years #AtoZChallenge

Posted on by Astrid

Hi everyone. It’s late once again as I get to my letter C post. I don’t tend to think up my topics in advance. Same with this one. It actually popped up in my mind several minutes ago and here I am writing about my creative journey. Okay, I did my entire #AtoZChallenge of 2022 on creativity so am pretty sure I covered this topic already, but let’s do a repeat in that case.

I am not very imaginative. Like I said on Monday, I most likely have aphantasia. This combined with blindness and my other disabilities doesn’t make me all that great of an artist. And yet, I love to create!

In childhood, I’d often draw dresses and other fashion items, pretending I was a fashion designer. I lost the vision needed to draw around age 12 and, even though my drawing teacher found me paper that would create raised lines when drawing on it, I also hardly drew anything beyond stick figures in boxes from then on. Don’t ask me about their meaning – yes, I know they meant something, but for the life of me I can’t remember what.

I didn’t craft or create art again until my mid-twenties. Then I started card making. Over the next five years followed at least a dozen other crafts. And now, I’m stuck on polymer clay, although to be honest I don’t use the medium nearly as often as I used to.

Creativity can, of course, also involve the written word. I wrote stories from a young age on. I started out writing fiction and the occasional poem. Now, I almost exclusively write blog posts.

I must admit, as I think back on my creative journey, that my level of imaginativeness has probably declined over the years and I didn’t always experience aphantasia. Not that I ever had a rich inner world. Well, that is, I have and always had a strong inner monologue (or inner cacaphony, in fact) and could probably describe an inner world in words, but I couldn’t visually imagine it at all.

I think this lack of imaginativeness is the reason I write personal blog posts mostly and craft mostly realistic figures or things from tutorials. I mean, of course a unicorn isn’t real, but I almost literally copied my style of unicorns from a tutorial. Realizing this makes me feel really sad.

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.

#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.

#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!

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.