July 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means it’s time for my monthly reflections. As usual, I’m joining in with What’s Been on Your Calendar? (or #WBOYC for short).

This month was a toughie once again. All I had to keep me going was an E-mail from the behavior specialist at the end of June saying that they were still investigating a possible new home for me, so I hadn’t been forgotten. This didn’t do much to perk me up, honestly. At the beginning of the second week of the month, my mother-in-law E-mailed her to request extra supports. We had been discussing her asking the behavior specialist to come round to talk to me every once in a while to keep me from spiraling further into crisis before, and in fact my mother-in-law had requested it before, but that message had not been responded to. This time around, it turned out the behavior specialist was on vacation till the end of the month. I’m pretty sure given her work schedule, she should be back tomorrow, but even though our E-mail was sent pretty early in her leave, I’m skeptical that she’ll respond then.

Of course, I did find out on the 23rd that a new home has been found for me. Like I mentioned last week, the way I found out about it was rather weird and I don’t know anything about the home other than what my care agency has on its website about it. A moving date hasn’t been set either as far as I’m aware and I won’t be informed till about two weeks in advance. My assigned staff asked me today whether I keep wondering when I’ll be moving. Yep, of course.

In other news, my support coordinator did leave the agency a few weeks ago. I can’t say I miss her, as I can talk to my new one much more easily. Still, I’m glad I’m leaving this place in the hopefully not too distant future.

I haven’t really been crafting much over this past month. The only thing I finished, in fact, is a bracelet with the glass beads I got from my mother-in-law for my birthday. Today, I did finally get round to claying once again. And got my hands all blue from handling alcohol inks without gloves.

I also didn’t walk as much as I did last month over this past month. I honestly don’t really care though.

Since iOS 16.6 resolved the Braille display bug that caused me to be unable to read books on my iPhone, I have been reading more over the past week. I also finally bought a blender, so yay for smoothies!

Here’s hoping August will be a better month than the past few months have been.

#WeekendCoffeeShare (July 29, 2023)

Posted on by Astrid

Hi everyone. It’s been a while since I last joined in with #WeekendCoffeeShare, so I thought I’d write a post for it. I just had my evening coffee, as is usual when I sit down to write these posts. I may still grab a cup of green tea later though, since, like I mentioned yesterday, I started using the Water Reminder app again. If you’d like a drink, cold or hot, join me and let’s chat.

If we were having coffee, I’d first share about the weather. It hasn’t been summerlike, honestly. Rather rainy and the daytime temperatures barely got above 20°C. It isn’t supposed to get any better soon.

If we were having coffee, then I’d repeat myself by shouting off the rooftops for all of the Coffee Share crowd to hear that YAY, I AM MOVING!!! Of course, as those who read my post from Monday will know, I hardly know any details about my new care home and a moving date hasn’t been set. However, the bits of information I do gather, make me feel like this could be quite positive. I mean, it’s not likely my dream home or anything, but then again that was supposed to be this one, only that dream turned into a nightmare.

If we were having coffee, I’d tell you that I’ve been spending more time among my fellow residents lately. It’s not really my choice, truthfully. In part, it’s because I look for familiar faces in the communal room when I get assigned the umpteenth new temp worker. Then when I do get a familiar staff, they often ask me to join the group too. This morning, my one-on-one for the moment sincerely claimed another resident had asked me to come play a game of dice, but I’m not 100% sure it’s true with all the times the staff are initiating it. For those who don’t know, me being in the communal room, unless I’m indeed playing a game with the aforementioned fellow resident, usually means me sitting around doing nothing while the staff chat among themselves or scroll on their phones, thereby my not doing any meaningful activity. Besides, I usually get overwhelmed very easily, but the staff expect me to be able to tell them rather than them picking up on my signs. Today, I was extremely overloaded for over an hour after spending not even twenty minutes in the living room. With the fact that I’m moving, I’m not sure whether the staff want me to practice functioning in the group more so that they can lessen my one-on-one, as that wouldn’t benefit them at all. However, I don’t see any other reason for them to initiate me being in the group so often.

If we were having coffee, then I would tell you I closed all my rings on my Apple Watch every single day this week so far. That’s quite an accomplishment lately, as in late June, I broke my 300-odd day streak of meeting my movement goal and I once again didn’t meet it last week. I honestly have been rather unmotivated in the exercise department recently. This week though, I logged more workouts – mostly walking – than last week.

If we were having coffee, lastly I’d share that I’ve generally been really uninspired over the past couple of weeks. I did make some simple smoothies with my new blender earlier this week, but other than that, I hardly did anything creative. I can only hope I can change this sooner rather than later.

Hello Monday (July 24, 2023)

Posted on by Astrid

Hi everyone. I’m joining Hello Monday for a weekend recap. The weekend was a true mixed bag, but those who know how much I’ve been struggling please do read on till the end for some exciting news.

Saturday was a truly crappy day. I got a total stranger as my one-on-one for the morning. This is not unusual, but the crappiness started as soon as I voiced my discomfort with her being a total stranger. Rather than try to comfort me, she was like: “What about if I leave you alone till coffee time?” Coffee time is at 11AM and it was just past 10AM. I said no, because despite what the staff here seem to think my one-on-one isn’t a mere suggestion. Fifteen minutes later, she was like: “I haven’t had breakfast yet. I need to grab some food, see you at coffee time, okay?” I went to the communal room, where my assigned staff happened to be, who set this straight with my would-be one-on-one. After that, we played some card games, had coffee and then she quickly decided to swap places with another staff. He’s not a stranger. Not someone I get along with, but at least I know what to expect of him (which is very little, to be honest).

In the evening, there was a staff shortage until 6PM and of course I was asked to come to the communal room to unburden the staff (his literal words). Then I got a staff I barely knew once again and only could play card games once again.

Sunday was better. I did get an unfamiliar one-on-one in the morning, but at least my spouse came by for a visit. We once again drove to Apeldoorn for lunch at Backwerk and hopped into Holland and Barrett for some essential oils. My spouse got a discount card even though we rarely shop there.

In the evening, my new support coordinator – did I share my old one left the agency a few weeks ago? – was my one-on-one for an hour. We went for a walk and discussed some aspects of my care, both unaware of the E-mail landing in my inbox at 7PM. My mother-in-law had forwarded it to me. It was originally sent to her at 11AM that morning. The subject line read something like: Painting Astrid’s new room.

The E-mail started with something like: “I am [name], support coordinator for Astrid’s new care home, [home].” The person writing the E-mail then went on to tell my mother-in-law that, when moving, a client can have one wall in their room painted in a desired color, and which color would I like?

I had heard my assigned staff mention this home among the possible homes considered for me, but I had absolutely no idea I had been accepted into it. I don’t know anything about the home other than what the care agency’s website says, which isn’t to be trusted due to the fact that they make things look better than they are. However, it isn’t really like I care. Any small improvement over the care I receive here is greatly appreciated.

Today, I confirmed with my support coordinator that I am indeed moving to this home. When the move will be, is not yet known for sure, but I’ll find out about two weeks in advance and be able to take a look around a few days before the actual move.

And for those who are wondering, I chose lilac as the color for my wall.

Gratitude List (July 20, 2023)

Posted on by Astrid

Hi everyone. I’m feeling like I have really been neglecting my blog. The truth is I’ve been struggling a lot, more so even than I used to. However, today I’m feeling pretty good so I’m taking the opportunity for a gratitude post. Here goes.

1. I am grateful for a fellow resident’s birthday celebration on Monday. Just after handover at 3PM, we all sat in the living room and sang “Happy Birthday” for him. We had fries and a snack for dinner too. Unfortunately, another resident did have a severe anger outburst right after we did the singing and was disruptive for the rest of the evening even when in his room.

2. I am grateful that, though on Tuesday I got the least familiar to the group staff assigned to me for my one-on-one, she was not the least familiar to me.

3. I am grateful for a comforting visit from my mother-in-law on Tuesday. It was good to be able to vent to her.

4. I am grateful for a delicious caramel ice cream bowl that my mother-in-law treated me to on her visit. Okay, my dress once again had ice cream and caramel sauce all over it, but oh well, it can be washed.

5. I am grateful for a satisfying dietitian’s appt on Wednesday. She was really content with my weight (which remains within the agreed-upon range) and my eating and exercising habits. For those who don’t know, I have a history of disordered eating, bordering on bulimia, so I particularly need to make sure my eating and exercising don’t become compulsive (in addition to not engaging in purging behaviors, of course).

6. I am grateful my assigned staff supported me for part of the morning shift on Wednesday despite there being a temp worker too. Granted, the temp worker is quite familiar with the group, but I’d more or less been told that I’d still be assigned the temp worker by default unless there are literally four regular employees.

7. I am grateful for a great experience swimming yesterday. I went into the pool with just a staff and no other residents. This particular staff has this really cool way of getting my playful inner child out, so we sang songs, jumped up and down and had lots of fun.

8. I am grateful my assigned staff agreed to contact the behavior specialist once she’s back from vacation to set up a meeting to discuss possibly finding me help in overcoming my sense of basic mistrust. It’s been getting progressively worse and is affecting my life here at the care home but also my marriage.

9. I am grateful I was allowed to borrow a fellow resident’s side-by-side bike this afternoon. It was a nice change from walking.

10. I am grateful for my spouse, who sticks by me even though I’m being quite difficult. We’ve had a few arguments and I’ve crossed my spouse’s limits a few times. I now realize this is probably my anxious attachment style getting in the way of our healthy communication. For this reason, I’m all the happier to still be going on together.

What have you been grateful for lately?

Physical Discomfort

Posted on by Astrid

I have been experiencing a lot of nausea lately and a bit of a decreased appetite. At first, I attributed the nausea to stress, then norovirus which was making its rounds here at the home. I was really sick with diarrhea and vomiting for only a few hours though, so it’s not even certain I had the virus.

If I have to be true to myself, I’ve been feeling a little unwell for a couple of weeks already. However, it’s really hard for me to tell when I even feel physically unwell and, if so, whether it’s “just” being a little off or it’s something I might need to see my GP for. For this reason, I usually keep going with physical discomfort for months. And even though alertness to my physical wellbeing is one of my care goals, my staff expect me to be able to signal to them when I’m having symptoms (and even when I do, it takes forever for them to take action).

Today, I did ask my staff to call the GP surgery tomorrow to inquire about my kidney function. It’s been decreased for at least a year and, even though I’ve had regular blood tests, I haven’t seen or been told of the results since the summer of 2022.

And guess what? Nausea and decreased appetite are a possible kidney disease symptom. So is itchiness, which I’ve had very badly for months. I don’t mind either symptom as much, in the sense that despite the decreased appetite I’m still eating well and I could continue putting cetomacrogol cream on my skin forever if the itch is nothing to worry about. But I want to make sure my kidney function hasn’t gone significantly further down.

And if it has – and honestly, even if it hasn’t -, I want a consultation with a psychiatrist to discuss tapering my psychiatric medications. I know, the ones that could cause kidney failure are the last ones I started – topiramate and pregabalin -, but I doubt either is very effective. Besides, I just don’t want to keep adding on to my med pile and, if my kidneys show further damage, I’ll need to go on meds for that too.

Let’s hope the staff don’t forget to actually call the GP tomorrow.

The Wednesday HodgePodge (July 12, 2023)

Posted on by Astrid

Hi everyone. It’s time for the Wednesday HodgePodge once again. Here goes.

1. Is your life simple? Elaborate.
My life is both boringly simple and insanely chaotic at the same time and like you might’ve guessed, neither is in a good way. It is simple in part because it’s so chaotic. I mean, if I get a new-to-me staff member each day, I don’t get to try exciting activities with them that require me to explain a lot, such as crafting, because I cannot be sure I’ll ever see them again.

2. What simple pleasure are you currently enjoying?
I’ve been enjoying listening to calming music on my music pillow a lot.

3. Travel by plane or go on a cruise? walk or ride a bike? swim or ski? ocean or mountains?
I’ve never been on a cruise and don’t think it appeals to me, so I’ll choose traveling by plane. Walk for sure. Swim! Not that I’ve ever been skiing but I hate snow and the cold. Oh, that last one is hard, but I’ll pick the mountains.

4. What’s the last thing you bought online that you really loved?
I haven’t done a ton of online shopping lately, honestly, because package delivery to the institution is quite complicated and staff at my home have a policy of opening packages before they get to me to check for stuff they deem inappropriate. I solve the problem by getting my online orders delivered to my in-laws, but this means I can get my stuff here at most once a week when my spouse visits me.

Anyway, to answer the question, I think my AirPods Pro 2. I’ve had them for about six weeks now and they replaced the original AirPods Pro that I’d had for two years but that had started to develop an annoying high-pitched beep.

5. What’s your “back in my day we__________” story?
Even though I’m only 37, I am an oldie compared to most of my staff, who are in their early to mid twenties. As a result, most of my “back in my day” stories probably revolve around relatively small changes to technology. For example, my spouse and I met on a message board and most staff never used those.

Compared to the other residents though, I’m young, as all others are in their mid fifties to early sixties. I find I’m often confused when other residents talk about what life was like “back then”.

6. Insert your own random thought here.
I am still struggling. In fact, last Monday, I hit another low point. My mother-in-law E-mailed the behavior specialist once again, but she’s on vacation until the 31st. I’m pretty hopeless right now.

How My Attachment Style Affects My Decision-Making

Posted on by Astrid

Hi everyone. I have been contemplating my decision to move to my current care home from the previous one a lot lately. My assigned staff often asks me whether I might be a little too critical, because my old care home offered near-perfect supports and yet I wanted to leave. Indeed, it could be this is a factor. I’m an Enneagram type 4, after all, always looking for that elusive ideal.

However, I am also insecurely attached. Attachment is formed in early childhood between the infant/toddler and their primary caretaker. When there is frequent disruption in this attachment and/or the caretaker isn’t a safe person for the child (as in the cases of neglect or abuse), this attachment doesn’t form or forms insecurely. This then will lead to problems later in life with relationships, both romantic and otherwise.

The different attachment styles described differ per professional, but I primarily score as anxious-preoccupied. This means that I am essentially looking for close connections to people, be they my romantic partner or otherwise, but also intensely fear them abandoning me. I also relate strongly to the ambivalent attachment style, which is essentially a mix between avoidance and preoccupation. This would explain why I push people away when I sense they might be abandoning me.

This is where my decision to move out of my old care home comes in. Starting at the end of 2021, half the team of my old care home left their positions, including some staff I could get along with really well. I remember, shortly before making the decision to ask my assigned staff to involve the behavior specialist in finding me a new home, E-mailing that same assigned staff. The contents of the E-mail were rather, well, needy. I expressed the fact that I knew none of the staff currently working at my home could guarantee they’d remain with me for months, let alone years to come. I probably even mentioned my spouse, who, though we have zero intention of divorcing ever, might leave me eventually. That’s life. No-one can predict the future. And honestly, it kind of sucks.

Though my then assigned staff assured me my E-mail had nothing to do with it, she did indeed quit her job several months later. However, the fact that the team as it was when I got my one-on-one support funding, had pretty much fallen apart, gave me the impression I didn’t need to stay for the team. And since otherwise the home wasn’t suitable for me – because the other clients couldn’t speak and needed far more physical care than I did -, I started the search for a more suitable home. Which, as regular readers of this blog will know, I didn’t find. I mean, yes, my fellow clients can speak, but the support approach is very different and not in a good way from what I got at my old home.

My attachment style also means I often come across as very trusting, because I at least initially accept everyone into my life because I have such an intense fear of aloneness. This is often misjudged to be a sign of secure attachment. In fact, recently a relatively new staff tried to get me to join him on a car trip to get food for just the staff during my designated activity time. I felt kind of lured, because I didn’t want to but he was like “it’s fun, I’ll buy you a treat too” and then I didn’t feel comfortable refusing anymore. This should’ve been a big no-go had this person not been a staff member, but since he’s a staff member it was okay, according to one of the other staff I talked this over with. What this staff didn’t realize is that I’ve had previous experiences of risky encounters with men and a history of being a victim of sexual violation too. And, though of course my easily accepting others isn’t to blame for any victimization (that would be victim blaming), it is important to realize I don’t distinguish between those in a position to help me and those who aren’t, like that staff person believed.

June 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of the first half of 2023. Wow, can you imagine? I’m joining What’s Been On Your Calendar? (#WBOYC). Here goes.

Honestly, I can’t remember much of the first few weeks of June, other than the fact that I was extremely motivated to get moving. I had signed up for two Apple Watch challenges. Suffice it to say that motivation quickly diminished and I finally broke my 300-odd day streak of reaching my movement goal yesterday. That is, I broke it last Saturday too but cheated by lowering my movement goal for that day.

In other respects, the month has been meh too. I only wrote twelve blog posts, including this one, and hardly have been crafting. I mostly spent my days playing dice and the odd card game. I think I might be depressed, but more likely it’s the shitty circumstances of living in my current care home.

However, I’m pretty sure my staff think I’m doing well, as I’ve been in the communal room more. The reason is mostly to connect to somewhat familiar people, because I’ve mostly been assigned completely new temp workers. When I try to communicate my discomfort with this, I’m usually met with rather curt remarks that the staff have no obligation to explain their decisions to me and then, when I spiral further into meltdown, I’m met with harsher and harsher actions from the staff.

The month of June is, of course, also my birthday month. I had my sister and her family over in Lobith last Saturday, which was okay, though a bit stressful. I spent Tuesday, which was my actual birthday, in Apeldoorn with my parents and spouse. I really loved the Thai food we ate.

In the health department, I have been doing okay. My cardio fitness level has been declining again, unfortunately and is now just barely in the below-average range. I gained a little weight too, but truthfully my weigh-in on May 31 showed the lowest weight I’d been in forever, so I’m not worried about that. After all, I’m still at a healthy BMI.

How was your June?

#WeekendCoffeeShare (June 23, 2023)

Posted on by Astrid

Hi everyone. I’ve once again been feeling really unmotivated to blog. I didn’t even bother with the Wednesday HodgePodge this week. Today though, I want to write. I’m joining the #WeekendCoffeeShare linky. It’s been a while. I already had my last cup of coffee for the day, but we all need to stay hydrated, so if join me for a glass of water, that’ll be fab.

If we were having coffee (or water, but I always start my paragraphs this way), I’d start out by sharing about the weather. Ours has been mostly sunny and warm with daytime temperatures of about 27°C. On Tuesday we had a thunderstorm here and on Thursday it rained continuously all evening. My spouse loves thunderstorms, but Lobith didn’t get any.

If we were having coffee, I’d tell you I have been struggling quite badly lately. The staff here seem to have decided to consistently send the least familiar to me staff member they have on board to do my one-on-one, even when that staff isn’t the least familiar with the other clients. I am of course the one labeled manipulative when I get irritable at the unfamiliar staff. I originally wrote a long rant about this situation, but deleted it because really it doesn’t help anyone.

If we were having coffee, I’d share that, due to these difficult circumstances, I’ve been feeling rather depressed and not as motivated to do much of anything. I keep playing dice games on my phone in an app called Dice World. I also play dice with most staff.

If we were having coffee, I’d share that my sister and her family are coming to Lobith tomorrow for an early birthday celebration for me. I will be in Lobith by about 11AM, though my sister won’t be there till 3PM or so. Unfortunately, on Sunday, my mother-in-law has to be on call for the animal rescue service she does volunteer work for, so we won’t be going there.

On Tuesday, which is my actual birthday, we invited my parents to come to Apeldoorn. We’ll hang out in a park close by where I grew up and then in the evening we’ll have dinner at a Thai restaurant.

I finally decided today that I do want to celebrate my birthday at the institution after all. I’m going to make cheesecake on Monday and we’re going to have French fries and a snack for dinner then.

If we were having coffee, lastly I’d tell you that I finally used my alcohol inks on a polymer clay project. I made earrings, of course. They’re a bit thick and I later found out my particular brand of alcohol inks isn’t very light-resistant, so the color will probably fade rather easily over time. At least now I know I can use my alcohol inks.

Also, I may get my ears pierced someday. I had my ears pierced in 2001, but wore large silver earrings right after the thingies they shoot into your ears when they pierce them. Thing is, I’m allergic to nickel and silver often contains that, so I got bad inflammation and eventually decided to let the holes close up. Now though I really want to be able to wear earrings again. My assigned staff offered to take me, so that’d be really cool.

How have you been?

The Wednesday HodgePodge (June 7, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge again. It’s been a while. Here goes.

1. Tell me something you remember (or if you’re not there yet, something you look forward to) about being 35.
I turned 35 in June of 2021. Honestly, it was one of the best years of my life so far, even though I didn’t see it at the time. It was the first year I had one-on-one and I started exploring polymer clay that summer, shortly after turning 35. I am pretty sure I made some of my best unicorns that year. At the end of 2021, I remember saying here on the blog that I had the best support I could hope for and now it was time to find the best med combo for me, referring to my wish to taper my antipsychotic. Honestly, looking back, I should’ve stayed in my comfort zone and not made the decision to want to move care homes (also when I was still 35, in April of 2022). Hindsight is 20/20.

2. Last time you “burned the candle at both ends”?
I rarely get up very early. My usual time to wake up is 8AM regardless of the time I went to sleep. That being said, if 8AM is considered early enough to count, I regularly “burn the candle at both ends, as I regularly stay up way past midnight. I remember once going to sleep at past 3AM and getting up before 8AM to get in my stand hours on my Apple Watch. I got 21 stand hours that day.

3. Are you someone with the “gift of gab”? Elaborate (which shouldn’t be a problem if you answered yes teehee).
I had to Google that expression. As for my answer, well, it depends. Sometimes I can talk up a storm, but sometimes I cannot articulate my basic needs.

4. Do you request a special meal on your birthday, and if so tell us what that meal is? Do you want the same kind of cake year after year or will any flavor work? Do you want cake at all? Growing up were birthdays a big deal in your house? Are they a big deal now?
I don’t really get to pick a special meal on my birthday now, although back in the psych hospital we could. Instead, I usually go out for dinner with my spouse and my parents on my birthdays. My spouse and I pick a restaurant. This year, we haven’t chosen one yet even though my birthday is on the 27th.

I don’t care for cake, honestly. My mother’s apple pie is good. So is homemade cheesecake. Other than that, I prefer a large waffle or something like that.

Birthdays were definitely a big deal growing up. That being said, I always managed to ruin mine as well as my sister’s with a meltdown or two. Now, though I like my birthday a little because of the presents, it’s more stress than fun.

5. “Age is just a number.”… agree or disagree? Tell us why.
I completely agree with Joyce’s answer to this question. I can feel all kinds of different ages, but it isn’t like I actually am an eight-year-old.

6. Insert your own random thought here.
I went swimming, yay! One of the student staff has a project on leisure activities for a client and she chose me. During our discussion, we talked about swimming. She initially wanted to go to the nearby lake, but I don’t really like that. It was actually my idea to call the institution pool to ask if there was a possibility for me to go swimming there just once. And there was. It was magical! And the best news is, it’s not just for once. Our home now has a spot to go swimming there each week.