July 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means it’s time for my monthly recap. July was most of all a hot month weather-wise. It had its highs and lows, but wasn’t as eventful as May or June had been. I consider that an okay thing.

The first half of the month was an uncertain time. I learned in mid-June that I was going to be moving out of this care home, but wasn’t sure of the details. I mean, for all I knew, I could be kicked out to a crisis unit or onto the streets.

It didn’t help that my aggressive behavior got a bit worse in early July. I had another major incident on July 10, in which among other things I told a staff she’d be facing a complaint. I never followed through, because she backed down with her restraint quite quickly. Later, I was told that the way the situation escalated would’ve in fact warranted me being restrained. I’m not entirely sure how much my support coordinator, who told me this, knew about the order of events, because well cause and effect were reversed: I spiraled out of control after the staff tried to restrain me, not the other way around. This particular staff has quite a harsh support approach, so I maintain that it need not have escalated into a restraint-worthy situation.

I will finally have a meeting to discuss my Care and Force Act plan on August 10. My support coordinator will be off work then, but the behavior specialist will attend, as will an independent client confidante. I will hopefully be able to make it crystal clear then that restraint is not a way to de-escalate a situation for me nor is it something that’ll teach me a lesson. Rather, its purpose is solely to keep me from causing significant harm to myself or others.

On July 16, I finally met with the behavior specialist, team leader and my support coordinator and assigned staff to discuss my moving out of this care home. It turned out that there are no plans of single-handedly terminating my care. As I read my housing profile, which will be sent on to the care finding people, I did realize that for some staff, the situation is however rather urgent. It isn’t like this surprises me, but it does kind of contradict the rather fluffy letter I received from the behavior specialist on July 16.

Today, I received a phone call from independent client support. The agency the substitute behavior specialist had recommended, didn’t feel like they could help me, but the one with the client confidante on involuntary care did. I was happy to find out that the same client supporter I’d spoken with several years ago regarding my move from the intensive support home to my current care home, was able to pick up my case.

In other news, today my now ex-wife and I received the letter that our divorce has been finalized. This means we’ll probably soon be talking selling the house. Otherwise, it doesn’t change much.

Over the month of July, I did engage in a few crafty and culinary activities. On Wednesday, I cooked the absolute blandest pasta pesto ever. I cooked it for my fellow residents too, but was so underwhelmed with the result myself that I didn’t even care to ask whether the others liked it. This did motivate me to learn more about the details of cooking beyond blindly following recipes.

Gratitude List (July 28, 2026) #TToT

Posted on by Astrid

Hi everyone. I used to participate in the Ten Things of Thankful blog hop regularly, but since the original blog on which it was hosted was abandoned in favor of a number of individual hosts’ blogs, I struggled to find it and, when I did, was often too late to join in. Now I’m still on time (though barely) and would like to share my gratefuls. It feels odd doing this on a Tuesday, but oh well. I’m doing this post in the classic editor because I struggle with lists in the block editor.

1. I’m grateful for my best friend. As regular readers of this blog know, the past year or two has seen a lot of change in our relationship, in that we used to be married. The divorce isn’t completely final yet, but that should happen this week or the next. I’m grateful though that, despite no longer being a couple, we still call each other almost daily and see each other several times a month.

2. I’m grateful for banana bread. I baked a vegan version last Saturday and my best friend and I got a small slice of banana bread (also vegan I believe) with our coffees at a coffee shop in Deventer last Sunday. I think the coffee shop one was better, though my own banana bread was also much better than all the other versions I’d baked before.

3. I’m grateful I was able to use up the leftover almond milk from the banana bread before it expired. I needed only 75ml for the banana bread and had a 1l container. I used the rest for smoothies today.

4. I’m grateful both of my smoothies turned out good. One was an espresso-based smoothie and the other, I just made using whatever I thought of: frozen mangoes, almond milk of course, chia seeds and a bit of honey.

5. I’m grateful for a tiny bit of crafty inspiration again. I started on some polymer clay earrings again yesterday.

6. I’m grateful all ingredients for the pasta I’m going to make for myself and my fellow residents tomorrow did arrive. The institution’s grocery service can be hit or miss, but this time, everything came in.

7. I’m grateful for good weather. Tomorrow’s supposed to be hot and it’s still horribly dry, but oh well.

8. I’m grateful for a new denim skirt. I’d never worn denim skirts before, but it’s nice. Also grateful for my size. As regular readers might know, I used to be obese. Since I’m also short, it’s hard enough finding fitting clothes in my size now that I’m at a (nearly) healthy weight, but it used to be near impossible unless I wanted horribly baggy sweaters and pants.

9. I’m grateful a staff braided my hair yesterday. Too bad I didn’t take a selfie.

10. I’m grateful for sleep. It’s been a struggle lately, but I do appreciate all the rest I can get.

#WeekendCoffeeShare (July 24, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I’ve had my last cup of coffee for the day, as usual. I’m soon stepping back to put on my pajamas. Usually I shower on Friday evenings, but today there’s no staff who’s able to assist me. I’ll also take a break for my 8PM meds and evening soft drink. If you’d like to grab a cup of your favorite hot or cold beverage, feel free to and let’s chat.

If we were having coffee, first as always I’d talk about the weather. It’s been pretty good: partly cloudy with occasional rain and daytime temps around 22°C. We’re supposed to get some warmer weather again next week with daytime temps getting as high as 33°C on Thursday I believe.

If we were having coffee, then I’d tell you that some days, I’m able to get in quite a bit of walking again. My toe still hurts a little, but I was able to go off the naproxen and use just paracetamol now. Due to some stupid miscommunication, I’m now officially prescribed both naproxen and paracetamol, but I just refuse the naproxen.

If we were having coffee, I’d share that I’m still struggling majorly with feelings of self-doubt, worthlessness and anxiety. I am quite scared that my extra support hours will be cut. It doesn’t help that there’s major talk in the media about autonomy-based policy, which is an approach populated for people (particularly young women) with chronic, serious suicide or self-harm risk. The idea is that these people need to call for help in preventing self-harm or suicide rather than use these behaviors as a cry for attention. I can see the idea behind it, but it only works if these people actually do get the help they need in preventing harmful behaviors. Since one of the prerequisites is that help needs to be gradually reduced, I can’t honestly see it working for everyone. I mean, I’d love to gradually have my support decreased, but the pressure of it only causes me further problems. Now I’m too old to be a candidate for the official thing and I’m not even in mental health treatment, but the whole idea majorly triggers me. One of the psychiatrists behind this approach does say it’s not the same as leaving patients to fend for themselves, but that’s exactly how it can be used if the pressure from the higher-ups (up to the government) increases. The term didn’t exist in 2017, but if it had, it’d been exactly the code bluff my treatment team would’ve used for doing what they did, ie. kick me out of the psych hospital after nearly a decade with next to no support.

If we were having coffee, I’d end on a positive note by sharing that I cooked pasta for myself again on Wednesday. I used eggplant, capers and olives and it was a completely vegan dish, so I reckoned my fellow residents wouldn’t like it. I however did. That being said, my staff said the eggplant had turned a little greyish. It tasted fine though.

I’m generally more interested in learning about vegan cooking anyway. Not that I will be a vegan or even vegetarian, but I’d like to be a little more conscious of what I eat and also experiment with different ingredients. For this reason, I’ve been adding some more cookbooks to my collection, downloaded off Bookshare. One of them had vegan banana bread in it. I however struggle a little with using the recipes in my Voice Dream Reader app. Then I came across a vegan website that also included a banana bread recipe. I’m going to try to bake that one tomorrow. If it’s good, I told my best friend I’ll leave her a slice.

#WeekendCoffeeShare (July 17, 2026)

Posted on by Astrid

Hi all! I’m joining #WeekendCoffeeShare once again. It’s now 7:30PM, so I’ve had my last cup of coffee for the day. I need to take a shower in about half an hour, so will let my post sit for a bit then and return after I’ve had my medication and evening soft drink. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. We were supposed to get another heatwave here this week. Thankfully, it wasn’t that bad, but only barely so. It’s incredibly dry though. Here’s hoping for rainy weather soon.

If we were having coffee, next I’d tell you I won’t be having a perfect month with respect to my movement goal on my Apple Watch. It’s not necessarily because of the weather. Rather, last week Wednesday, I stubbed my toe and it led to a small fracture. The staff who was here when it happened (in fact, I stubbed my toe on his shoe) initially thought it was just bruised. Unfortunately, I took this to mean I shouldn’t be nagging even though the next day and the next and over the weekend, my toe hurt like crazy. I ignored the pain and kept walking. Then on Sunday, the pain was so bad that I could barely walk outside at all, so the staff who was with me at the time, said we should ring the GP on Monday. The GP’s nurse practitioner came by on Tuesday and said I probably suffered a small fracture indeed. Since it’s my little toe, nothing can be done, but she did give me naproxen for pain relief. It’ll likely take several weeks for my toe to fully heal, but next week, hopefully I’ll be able to get by with just paracetamol.

If we were having coffee, then I’d share that I had a meeting with the behavior specialist, team leader, my assigned staff and support coordinator yesterday about the moving plans. It turns out they have no plans of actually kicking me out against my will. They just believe, like the substitute behavior specialist said about a month ago, that a place for people with brain injury may be more suitable for me. Whether finding me a suitable place is possible given my current care profile and the extra support hours etc., will have to be determined. It’s all quite scary, but I’m not as scared as I was before I had this meeting.

If we were having coffee, I’d tell you I also had a meeting with the intellectual disability physician on Monday. I went down another 1mg of my antipsychotic. I’m now on 6mg of aripiprazole. I can’t believe I was at one point, for many years in fact, taking 30mg.

We also discussed my getting access to my medical records. Thankfully, she gave me permission. The GP will have to sign me into the system though.

If we were having coffee, I’d share that I didn’t cook last Saturday or Wednesday, but I did make another batch of granola on Wednesday. The reason I didn’t cook is the fact that I reasoned it’d be too hard for me given the stress of the two meetings I had. All this being said, I did help with preparing my own lunch by cutting up the vegetables I usually have as a side a few times. This was a good experience.

If we were having coffee, I’d share I did engage in a few creative activities over the past week. One involved making polymer clay earrings. The finished project didn’t satisfy me, but the process was fun.

I also created another unicorn-themed chalk pastel drawing. Can’t remember whether I shared this before, but one of the staff is incredibly creative and she at one point came up with this idea. I used a template for drawing the unicorn and of course I know my six-year-old niece can probably do it better than I can, but who cares? I’m more and more appreciating the fact that I can do something rather than focusing on what I can’t compared to non-disabled people.

This brings me to another creative adventure: photography. I’m hoping to soon take more pictures and to actually share them on the blog. I in fact subscribed to a few blogs that have photo prompts and am liking them a lot. I really would like to expand my creative horizons.

#WeekendCoffeeShare (July 4, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s nearly 10PM as I start typing this post and I’ll soon need to brush my teeth, but I’ll finish this post before going off to bed. I just had my cup of green tea. If you’d like something to drink either hot or cold, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. The heatwave has thankfully ended and we now usually have daytime highs of about 24°C, sometimes even cooler. It’s been quite windy and occasionally rainy too, so I’ve actually even been wearing my jeans again.

If we were having coffee, then I’d tell you that, obviously, I didn’t meet my June monthly challenge goal on my Apple Watch and I didn’t get the perfect month award. So far in July, I’m still meeting my movement goal each day, but I’m not expecting to make it to a perfect month this time either.

I did ride the side-by-side bike to the next town’s market again yesterday. It had been months since I visited the market, but the guy behind the olive stall did recognize me.

If we were having coffee, then I’d tell you all that I celebrated my birthday at the care home on Wednesday. It was a bit difficult. I’d had big plans for baking two cheesecakes and making a pasta bake for the entire home (20 residents). The cheesecakes were a success, but during the pasta bake preparation process, there were some bumps in the road. However, in the end both were delicious! Yes, even the fellow resident who always complains about food being too spicy, loved my pasta arrabbiata bake. I’d made it once before but had then deseeded the peppers. Not this time.

Caramel cheesecake
Pasta bake

If we were having coffee, I’d tell you that I’ve also been quite crafty recently, particularly early in the week. I crafted two small butterflies out of polymer clay (using a mold), to be turned into earrings later. When my one-on-one for the moment saw my other molds, she wanted to use a bigger butterfly mold that I hadn’t used in years. She proposed to use multiple colors in a marbling technique and chose eight all very different colors, including both yellow and purple. I know a little about color theory and said yellow mixed with purple becomes a horrible brownish color. My staff said that, if the butterfly turned brownish, she’d take it home and display it on her fridge. I ended up giving it to her regardless, but it didn’t turn ugly! I do take the credit for being careful not to overmix the colors, though in hindsight I might’ve undermixed them for the effect she wanted.

Polymer clay butterfly

If we were having coffee, I’d share that this crafty endeavor made me decide to order several other small earring molds. My sister had gifted me a voucher for one of my favorite clay supplies shops and I spent it on molds, cutters and also two new colors of acrylic paint. One of the paints was named sorbet and I had absolutely no idea what color that’s supposed to be. I now realize I could’ve had AI describe the image on the website, but I ordered the color and only discovered that it’s a kind of pink once it arrived.

If we were having coffee, I’d finally share that specialized client support contacted the behavior specialist and they’re now going to get back to me. When I found out they wanted to talk to the behavior specialist, I feared my care agency was going to hijack the entire process. I’m still not convinced that they aren’t, particularly since finding out yesterday that the team leader had informed the staff that I’m leaving before I’d even gotten a clear idea of the consequences of the meeting with the substitute behavior specialist in which she’d posed the question whether I’m in the right place here. It doesn’t help that staff are making all kinds of assumptions about what kind of place would be better suited to me and what I find most important. The truth is, my main requirement is that a future placement’s team, including higher-ups, truly wants to understand and accommodate my needs. I don’t want to have to move again in two or three years.

#WeekendCoffeeShare (June 27, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s nearly 10PM, so no more coffee for me. I will probably take a break from writing this post (or maybe two) to have a drink of water though. It’s my birthday, but I’m not celebrating it at the care home until Wednesday. My best friend did bake me a nice vegan cheesecake though. No pictures, unfortunately, but it was good even though she said she’d forgotten the added sugar. Grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. We’re in an extreme heatwave right now. I have hardly been outside since Tuesday because daytime temperatures literally reached over 35°C. The nighttime temp didn’t get below 22°C last night either. The humidity makes it even worse. We’ve had a heat index of 10 out of 10 for the past few days. It’s June, for goodness’ sake!

If we were having coffee, then I’d tell you that I obviously didn’t meet my movement goal on my Apple Watch most days this week. I haven’t been for walks since Tuesday and, since the heat indoors is unbearable too, I can’t dance either.

If we were having coffee, then I’d moan about my Braille display. It’s got lagging dots again. That’s not the worst, honestly. The worst is the fact that, due to the fact that I’m quite sweaty from the heat, I can’t use my Braille display at all or it’ll for sure get moist damage. I’m trying to type this post using JAWS (my screen reader) with just speech now. Being that I was a Braille-only user for the first 20 years that I had access to a computer with a screen reader, this is quite a challenge.

If we were having coffee, next I’d update you all on the divorce. As it turned out, the two of us signing the paperwork wasn’t the last step in the process. Sure we’d been told, but both of us had forgotten. We each still had to have a video call with the lawyer who’d write the request toe the judge. This was last Thursday and it was easy-peasy. I’d expected to be challenged on some of the details in the agreement that are formally to my disadvantage, but he just asked me to confirm that I agreed to them. The divorce has now been submitted to the judge for approval. This will likely be a piece of cake too, so with all going as planned, we should officially be divorced by early August at the latest.

If we were having coffee, I’d tell you that my parents, particularly my mother, didn’t take it well. This among other things has caused me to cut off contact with my parents earlier this week. My sister probably knows even though I didn’t tell her, but she’s so far treating me respectfully.

If we were having coffee, I’d then share about my birthday. It’s my 40th and I’d been looking forward to it for a while, but the situation with my parents causes me to feel a bit bummed about it. I spent the day with my best friend. She gave me some lovely gifts. First was a package of polymer clay in colors none of which I had so far. Half are from the Botanical range and I’d been aahing over those for months. The other gift was a mug. I’d already gotten a 40th birthday mug from my home (well, I’ll ultimately pay for it myself, but the others don’t know that). The one I got from my best friend is much better though.

I’ll celebrate my birthday at the home on Wednesday. I will then get the rest of my gifts, but wanted the birthday-theemd ones in advance because my sister and her family were here last week. They gave me a squishy ball and a doll that my nieces probably selected. Today, my sister also sent me a gift card for one of my favorite clay supplies shops.

When I celebrate my birthday here at the care home, I’m going to bake a caramel cheesecake or probably two. I’ll also cook a pasta bake for everyone (both sides of the home). Hopefully it’ll be less hot by then.

#WeekendCoffeeShare (June 13, 2026)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 7:40PM as I start typing this post, so I’ll soon take a break for my evening soft drink and chips. I made a smoothie for myself and my fellow residents about an hour ago. It was good. I used frozen mango, pear, flaxseed and soy milk. Feel free to grab a virtual cup yourself (I’m pretty sure the real smoothie has all been consumed). Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, we had daytime temperatures around 18°C. We also had rain, wind and some thunderstorms.

If we were having coffee, next I’d tell you that this week, the institution’s four-day evening walking event was held. That is, two out of four walks were canceled because of a code yellow weather warning for thunderstorms. On Thursday and Friday, the walk did go on, but we were soaked in rain on Thursday.

If we were having coffee, I’d share that I’m still going strong with my movement goal on my Apple Watch despite the weather. I’m not meeting my exercise goal each day, as sometimes the weather only permits one short walk, but apparently it’s still easy enough to burn 300 active calories each day. I am currently only 1kg overweight, by the way, which is why it kind of surprises me I still meet my goal relatively easily.

If we were having coffee, I’d tell you my week has been hard in other respects. Early in the week, I needed support during the night, waited patiently for a staff to make his way from the main building to me only to find out later on he’d been spending ten minutes putting away dangerous objects from the living room before seeing me even though there hadn’t been a reason to think I’d use them. I heard him rummaging about in the living room, so asked what was going on, thinking maybe it was a fellow client. He said it’d been him, the night staff. “And it’s night, so please go to sleep.”

A few nights ago, I did go to the kitchen and pulled out scissors but didn’t use them. This prompted the night staff to request the kitchen be locked at night again because of the time it takes the staff to make their way here. This request could’ve been reasonable (if a little overboard), if not for the fact that the kitchen only has a gate, not a full-size door. This means I can easily climb over the gate using a chair, causing a fall risk that in my opinion outweighs the risk of me self-harming using one of the objects in the kitchen. Besides, if you want to eliminate every risk of a client self-harming, well, you’d need to drug them up and tie them down. This question, whether clients need to be kept safe from harm at any cost, has been on my mind a lot. As much as I cling to life itself though, surviving is meaningless if my quality of life is poor.

This same issue came up on Wednesday when I saw the physical therapist. She’d recommended I start using a rollator walker. I’m not altogether against it, although I did say so when she came by with it, but that’s more because she claims she won’t do anything for me unless I start using the walker. The reason I’m leaning towards rejecting it for now is the fact that with it being incompatible with a white cane, it’d lead to even further dependence on non-disabled people than I already experience. I know it’d theoretically at least cause me to walk more safely, but the only times I’ve fallen over the past year have been times I didn’t wear my orthopedic footwear for one reason or another (usually because it was at the repair shop yet again). The physical therapist keeps saying nothing can be improved about the footwear, promised me an extra pair of shoes but never got to actually making sure I’d get one and is now saying I shouldn’t walk as much as I do. She isn’t giving me any alternatives to walking either. This and other things make me believe the professionals’ feelings about risk are more important than my feelings about my quality of life.

If we were having coffee, I’d share that I’m stressing quite a bit over the divorce. The final appointment with the mediator was supposed to be last Tuesday but got postponed a week for practical reasons. I’ll also have a meeting with the client confidante, my assigned staff and the behavior specialist on the same day. I try to separate the divorce from my care situation. However, the fact remains I’ll be literally homeless without the care home from this coming Tuesday on.

If we were having coffee, finally I’d share that I was on the phone with my wife between my evening soft drink and finishing this post. I told her I’d been making smoothies. Then we got talking about blogs. My wife joked that mine isn’t juicy enough for the divorce mediator to read, so I replied that I’d have to share smoothie recipes to make it juicier. That made her laugh out loud.

#WeekendCoffeeShare (June 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I just had my evening coffee and will probably take a break from writing this post to have my soft drink and chips at 8PM. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been less hot and more humid than it used to be. The daytime temperatures this week were often around 18°C and it’s been rainy. We also had quite a few thunderstorms. I’m not liking the rain and still sweating as it’s still warmer than I’d like (is this perimenopause hitting?), but I tell myself this weather’s more normal climate-wise.

If we were having coffee, I’d share that I reached a perfect month with respect to my movement ring on my Apple Watch in May. So far, I’m still meeting my goal each day, though it’s been challenging with the rain. I didn’t complete my monthly challenge for May, by the way.

If we were having coffee, I’d share that I’m still struggling with my care situation and whether it’ll actually work here or not. The behavior specialist did reassure me that they can’t kick me out even if it turns out this place can’t provide the care I need.

I was worried about being kicked out after I had several more incidents in which staff used excessive force and I was quite blunt that I won’t have to put up with it. The meeting with the care confidante has been scheduled for the 16th. The substitute behavior specialist will be gone by then and the regular one will have the meeting with us. She can be a bit, well, challenging. This caused me to feel scared that, if I put my foot down that I won’t have to deal with force unless absolutely necessary to prevent/avert serious problems, she’s going to turn it into a battle around care refusal. I had this experience before. Let’s hope the meeting goes as well as possible.

If we were having coffee, I’d share that I did have some positive experiences this past week. On Monday, my staff and I decided to take pictures on our walk on grounds. I ran them through the image description tool built into JAWS and it was really good.





On Thursday, the same staff offered to help me create a soft pastel drawing using one of my unicorn templates. I hung it onto my bathroom door, but unfortunately it crinkled when I opened the door too many times, so I removed the drawing. I did snap a picture though.

If we were having coffee, I’d share that I cooked dinner twice this week. On Wednesday, I cooked minced meat, rice and vegetables for just myself. I didn’t really enjoy it, because I’d gotten it in my head that the mince was infected with prion-borne disease. My wife, who is a vegan, isn’t the right person to comfort me in this respect (though she did try), but she is the right person to advise me on how to cut back on animal products and eat more healthfully in general.

I decided to cook a vegetarian pasta dish this Saturday. On Wednesday, I had to make a grocery list for it and I decided kind of impulsively to cook the dish for my side of the home. I cooked orzo with spinach and tomatoes. I initially thought I wouldn’t like it (don’t ask me why I picked it then), but I did and so did my fellow residents!

I just ran the photo of this dish through the image description tool and I’m not as content with the description this time.

If we were having coffee, lastly I’d share that the final meeting with the divorce mediator will be on Tuesday. I’m struggling quite a bit with the reality of my wife and I divorcing. I mean, I try to tell myself we’ll remain best friends, but I can’t just shut down my anxious attachment style.

Besides, the behavior specialist does seriously wonder whether I’m in the right care home. I did tell her that, if it turns out it’s in my best interest to move again, I don’t want to be handed over like a parcel, like I was when I left Raalte and when I came here. This does have me consider several factors involved in potential new care homes, including the distance from my best friend. Like, if the most appropriate care home for me is across the country, does this mean I’ll be all alone there? It’s all quite complicated and stressful.

#WeekendCoffeeShare (May 23, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I originally started typing this post yesterday evening but got distracted and distressed and then never finished my post. It’s now nearly 9PM on Saturday. I just had my evening soft drink but since it’s blazing hot out here, I’ll have to make sure to drink plenty of water. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d expand on my comment about it being blazing hot and talk about the weather. Early in the week, the daytime temp barely got above 12°C and we had rain. On Wednesday, the daytime temperature started to rise and today it’s 30°C. I honestly don’t mind as much, although of course it still being May this makes me worried for the real summer.

If we were having coffee, then I’d share that I am still in the game for a perfect month with respect to my movement ring on my Apple Watch. April was a hard month and I didn’t meet my goal several days. This month, I’m probably not going to meet my monthly challenge goal, but at least I still have a chance at closing my movement ring each day.

Yesterday, the staff and I originally planned on riding the side-by-side bike to the nearby lake for a cup of coffee (and my favorite caramel pie). Unfortunately, the bike wouldn’t work properly so we went for a walk instead and stopped by the institution townhouse for a coffee. They sometimes offer cake too, but apparently not this time.

If we were having coffee, I’d share that I made use of both my culinary activity time slots this week. Today, I baked a banana cake. The bananas should’ve been riper, but it was okay nonetheless.

On Wednesday, I cooked a one-pot pasta dish with broccoli, chicken and pesto sauce. I’ve given up my idea of cooking vegan dinners only, because all the prep is just too hard.

Besides, the behavior specialist noticed how happy cooking for my fellow residents made me and talked to my support coordinator about it. Soon, I’ll likely have a weekly opportunity to cook for my side of the home. Whether this will be full-on dinner prep each week, will have to be decided on.

If we were having coffee, next I’d share that the behavior specialist came by on Thursday for a talk. It’s a shame she’s a substitute, because it looks like she’s much more understanding of my situation than the regular one. I do hope that she’ll be able to talk some sense into the regular one when she comes back in a month or so though.

It isn’t like she wasn’t critical of me, of course. For example, she asked me whether there’s any risk in my writing about my life in the institution openly online for this care agency. I was up front with her that I can be quite harsh in my criticism of my staff and, if they read it, they may recognize themselves. However, I never name my institution or any individual workers. Not that, being that I’m not an employee, there’s any law prohibiting me from naming and shaming the institution if I so wished, but I can see it wouldn’t help my relationship with my staff. That’s why I don’t usually give out my blog address to staff.

One of the positive outcomes of our meeting is the fact that the behavior specialist and I got talking about my IQ. As regular readers of this blog know, the IQ that’s in my care plan was pulled out of mid-air, in that no-one except for me knows where it came from and until now, no-one seemed to care. It turns out she’d been looking for the report and couldn’t find it. Phew, finally! I explained that the report is nowhere to be found except on my personal computer. The report literally dates back to 1999 and isn’t the best childhood psych eval report I have at that. But it’s the one with the catchiest punchline, ie. the three-digit IQ score. I never realized myself until very recently that most staff, being practically educated, go right for catchy bullet points and, as a result, won’t remember the pages and pages of information about my emotional development when they’ve been wowed about my “super high” IQ. In any case, here’s hoping the behavior specialist will finally get this nonsensical number removed from my care plan.

If we were having coffee, I’d then ramble on non-stop about the other issues this meeting brought up. Do you have a couple hours? I just deleted an incredibly long paragraph because I saw my post was fast approaching 1000 words. Instead, I’ll wrap this up and go to bed, as it’s nearly 11:30PM by now.

Breaking Point #WotW

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again, as well as participating in the Word of the Week linky. I’ve been struggling intensely over the past few weeks and am wondering how much longer it’ll take before I reach breaking point. Or whether there is such a thing as a single breaking point, honestly. I mean, I’ve been comparing the build-up to my being quite likely burned out to the horrific experiment (I tell the animal-loving part of myself it’s just a thought experiment, but I doubt it is) of the lobster in hot water. You know, the idea that if you throw a lobster into boiling water, it’ll jump right out, but if you gradually boil it, it won’t notice until it’s too late and then it’ll die. Realizing this actually happens makes my inner vegan sick! But I digress…

First, I’d like to talk about the weather. It’s been mild with daytime temps between 14°C and 18°C, but the nights have been a lot colder. We had a little rain early in the week, but none over the past few days and there’s none in the forecast for the upcoming week either.

Then, let me share how things have been going. I’m increasingly overloaded and have had quite a few incidents of crying uncontrolably over the past week. I’ve also been engaging in some compulsive self-imjurious behaviors, particularly at night. I’ve almost literally needed the night shift each night over the past few weeks. Each evening, I’m telling myself I won’t need them tonight and feeling guilty when I do. Most night staff are still understanding and kind, but it’s only a matter of time before they, like the regular staff, will grow weary.

Unfortunately, my support coordinator and assigned staff aren’t on the same page. The rest of the team are all over the place. Most are struggling intensely with feelings of powerlessness. Some admit that they wish they knew how to help me, while others act out their feelings by screaming in my face that if I go on like this, no-one will be there for me anymore. The first group, I feel some level of compassion for even if I don’t know how to show it. The second, I only feel scared of. I’m currently actually terrified for the times the staff who screams about there being nobody for me anymore the loudest will be supporting me. This is the same staff who shoved the “one chance” rule down my throat a few months back, but she’s also the same staff with whom I used to do quite many fun activities. She’s not a bad person or a lazy staffer, but she’s most definitely overworked.

I see it’s a vicious cycle: I’m distressed, exhibit more challenging behavior, which frustrates the staff, who then act out in more repressive ways, causing me even more distress… and unfortunately it’s the staff who show the least harmful repression to me who see the most of my obvious distress. I’m extremely scared of where this will end. My worst fear is the harsh staff being seen as more effective and their actions therefore being reinforced. I’ve heard of more than one current client at this institution being “bullied” (staff’s words) into compliance and I know even the Center for Consultation and Expertise is all for ABA (applied behavior analysis), including in many cases aversives.

I do try to see some glimmers each day. I however sometimes feel guilty when I can’t appreciate them or end up spiraling over some apparently tiny detail when I did enjoy some meaningful activities that day. I constantly hear the staff’s (same staff who screams that soon there’ll be nobody) words that I have nothing to complain about because I get familiar staff and enough one-on-one ringing in my ears. I try to remember my support is better already than it was at the intensive support home, but that only contributes to more guilt over my inability to be upbeat.

Recently, after a few incidents in which I’ve become physically aggressive, I’ve been thinking I should be forcibly medicated or even euthanized. My inner animal lover sometimes contributes to this. If aggressive dogs are put down, shouldn’t I? My wife, who is a vegan, countered that just because aggressive dogs are currently put down, doesn’t mean that’s the way it should be.