Gratitude List (September 8, 2023) #TToT

Posted on by Astrid

Hi everyone. It was a rather eventful week. Time for me to focus on the positives in a gratitude post. I’m joining Ten Things of Thankful, which is back after a hiatus over the summer. Here are my thankfuls.

1. I am grateful I have a moving date! This obviously tops my list. Like I mentioned on Wednesday, I’ll be moving to the new care home on the 18th.

2. I am grateful my mother-in-law is taking time off from her volunteer job to come to the visit to look at my room and have a coffee at the new care home on the 15th. Hers may be a volunteer job, but it’s responsible work, as she works for an animal rescue shelter and they’re required to maintain 24/7 availability.

3. I am grateful for quality time spent chatting and playing dice games with a fellow resident. Today, she won, which was good, as I had spilled the beans about my leaving this home a little earlier than I’d originally planned and she was quite upset. For the record, I didn’t let her win.

4. I am grateful for the nice card this resident gave me, even though I told her I wouldn’t be leaving today.

5. I am grateful for sunny and warm (well, hot) weather. It’s a little too hot for my liking, but I love the fact that I can wear my summer clothes a little longer than usual.

6. I am grateful my Braille display and computer both behave. Both gave me a scare this week. I bought new headphones on Sunday. Not because I needed them but because they’re fluffy and pink. Then when I plugged them into my computer, somehow my PC decided to install TikTok. This was a coincidence, as a 3.5mm audio cable can’t transfer data like that. However, I had no clue so started messing with my computer like crazy, uninstalling everything I didn’t recognize. This thankfully didn’t cause any long-term problems, but for a while I thought my Braille display wasn’t working so I must’ve somehow uninstalled its driver (even though I recognize that manufacturer). In the end, rebooting my Braille display solved the problem.

7. I am grateful for a delicious blueberry smoothie I made on Monday with a temp worker. I used frozen blueberries, yoghurt, vanilla extract, cinnamon and sweetener. It was absolutely amazing!

8. I am grateful for some long walks when it still wasn’t too hot outside.

9. I am grateful for a great essential oil blend in my diffuser. Yesterday, a fellow resident was out of control a lot and it was causing me anxiety. I eventually decided to ask the staff to help me create a blend so that I could calm down. I put patchouli, white fir and lavender essential oils in the diffuser.

10. I am grateful for the will to write. I may not always know what to write about, but at least I want to write. I currently have a seven-day writing streak going (although I still need to write today, which will make it eight days) in Day One, which is rather cool. Sometimes, all I write is a quick gratitude list (which I drew inspiration from for this post) or a “My Day” template post, but that’s okay too.

What are you grateful for?

The Wednesday HodgePodge (September 6, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here goes.

1. It’s National Read A Book Day…whatcha’ reading? What’s a book you want to read?
Honestly, I’m not currently reading any book. That is, I’m paging through a few, among them a positive body image workbook and Find Your Path by Carrie Underwood. And of course a ton of journaling books. I can’t remember the last book I actually read. I thought I wanted to read Cathy Glass’ latest foster care memoir, only to find out it’s her penultimate book. That’s truly sad, as I love the author. It immediately caused me so much disappointment I don’t think I want to read this book after all.

2. Which is better…having high expectations or low expectations? Explain why.
I am probably in the minority here, but I think having low expectations is better. Still better yet is having no expectations at all, but to let things unfold as they will. I grew up with parents who put a lot of pressure on me under the guise of high expectations and this – among many other things – led to some emotional scars. I also feel that, if we have high expectations of others in life in general – so people other than those lower on the social ladder than us (like children) -, we often come across as demanding and critical.

3. Serenity is ________________________.
A feeling of calm and being in the present.

4. What’s the most interesting thing in your purse or pocket right now?
Uhm, I don’t have a purse and rarely have anything in my pockets.

5. What helps you calm down?
Ideally, lying under my weighted blanket with my stuffed lemur’s tail over me, my essential oil diffuser on and a calming Spotify playlist like this one playing on my music pillow. Or just lying under my weighted blanket, if my phone needs charging and I don’t have any essential oil blend in my diffuser at the moment.

6. Insert your own random thought here.
I have some awesome news: I have a moving date!!! On September 18, I will be moving to the new care home. I still know next to nothing about it, but I’ll follow my advice on question #2 and just let things unfold as they will.

I Am My First Priority: Intentions for Focusing on My Quality of Life

Posted on by Astrid

Hi everyone. I paged through The Goddess Journaling Workbook again yesterday and saw the first prompt: “I am my first priority”. Okay, I did write about it already back in 2020, but I think I need to revisit it and set intentions for putting myself first. I know, we are often taught, especially in more conservative circles, that we need to put others first (or after Jesus, but ourselves last, in any case). Then some more leftist folks teach us about self-love as if it’s about essential oils and vegan smoothies. Which it could be, but this is not what I mean. Rather, self-love means being true to our own values over those imposed upon us by others. And that doesn’t need to be selfish.

Now of course I need to determine my values. I’ll narrow those down to what my major point is for being in care, ie. my main goal. This is quality of life. This may be obvious to most people who aren’t involved in the care system and it should be obvious to those who are too, but for many, the presumption of competence or the need to manage daily crisis behavior clouds their vision towards quality of life. In fact, I’ve even seen one care agency state that their aim is to “maintain and where possible promote” quality of life in their clients. Well, this is wording I’d expect to go with “independence”, not “quality of life”, since truthfully, quality of life can always be promoted.

So what does quality of life mean to me? It means that I decide what I spend my limited energy on. This doesn’t mean lazing around all day doing nothing and it doesn’t mean I won’t ever improve on my ADLs at all either. What it means is that I take the lead, focusing on my daily level of energy. I told one of my staff the other day that I would prefer if she doesn’t tell me to do something independently, but rather invites me by asking me whether I want to do it independently. In that case, she’s much more likely to get me to actually do it, as I don’t feel the pressure of her expectation, because I can say “No” if I don’t have the energy at that point.

It also means that I decide what activities to do during my allocated activity time. In my current care home, I have been sometimes not even consciously adapting to staff’s preferences for activities way more than I feel comfortable with. For instance, I’ve been taken on grocery shopping trips for the staff’s personal needs under the guise of an activity more than a few times. I eventually put a halt to that, saying I would only go if I too needed something from the supermarket. Another, even more frequent, example is my playing endless card or dice games because I’m assigned a new temp worker who comes across like they’re just here to pass the time. Yesterday, I was assigned one of those and had had it with dice and card games, so I thought, screw it, we’re making a smoothie. It turned out absolutely delicious!

It also means being intentional with my unsupported times. This means rather than mindless scrolling, doing actual reading, watching or listening online. I fully intend on blogging or at least journaling more often. If I can stop caring about my stats, maybe I can post here more often based on self-help journaling prompts. I didn’t collect those books for nothing, after all.

It means being constructive in my relations to my staff. It means being honest about my needs. For example, if a staff member (usually a new temp worker) causes me emotional flashbacks with something they do or say, rather than just telling them I feel in distress, I will hopefully be able to ask for a more trusted staff to intervene for a few minutes (which isn’t the same as demanding I be supported by all trusted staff).

Finally, I will also be constructive in contributing to my crisis signaling plan once it is revised at the new care home. My plan dates back to sometime in 2021 I believe and was immediately thrown out by my former support coordinator here because “it doesn’t work at this home”. What “works” here, however, doesn’t work for me, but that doesn’t mean my plan will be fully useable at my new care home. I will try to understand the staff’s perspective when updating the plan, but will still put myself first.

#WeekendCoffeeShare (September 2, 2023)

Posted on by Astrid

Hi everyone on this first Saturday of September. I’m joining #WeekendCoffeeShare, even though it’s waaay too late for me to have coffee. That is, I don’t usually feel the energizing effects that strongly, but I am sure the staff won’t let me have a cup of coffee anymore. Or anything to drink except for water, truthfully. So let’s have a glass of water and let’s catch up.

If we were having coffee (or a glass of water, but I always start my paragraphs like this and even my saying that is a cliché), first I’d share about the weather. We’ve had rain, clouds, some sunshine and daytime temperatures usually around 20°C. Today, the daytime high was 23°C and next week, we might even get temperatures as high as 28°C.

If we were having coffee, next I’d tell you about my movement. I haven’t been exercising as much this past week as I did last week and today I saw in my trends in the fitness app that my exercise has decreased. Of course it has, you’d say, if I haven’t been exercising as much this week as last week, but the trends compare the past 90 days to the past 365 days. I try not to care, even though I did sign up for a month-long challenge in the Challenges app for September.

Yesterday, when on a walk with my assigned staff, we compared data, since she also has an Apple Watch. I’m glad my cardio fitness level wasn’t much lower than hers. I mean, I would’ve felt bad for her if both of ours were low, but mine is in the below-average range.

If we were having coffee, I’d tell you that, on Thursday, my assigned staff and I went out to have lunch together. She’s off on vacation for the rest of September and I’ll (most likely) move this month, so we won’t see each other again. We both had a large salad, mine one with chicken, of course. We both also had a heavenly caramel coffee.

Today, I decided to gift my assigned staff the blue polymer clay unicorn with Hotfix rhinestones on it. I remember creating my very first unicorn here at the institution with her. I originally hadn’t intended on giving my polymer clay creations away, like I had done when moving out of the care home in Raalte, but then again if I take them with me to the new care home they will probably break during transport. I’ve seen a little too many staff come and go here to have a piece for everyone, but I have something for the ones I see most often.

If we were having coffee, I’d share that I’ve been collecting books of journaling prompts once again. Amazon.nl now allows customers to pay for Kindle books with their bank account, for which I’m extremely grateful. Until last Monday, you could only pay for digital products with a credit card, which I don’t have, so I only downloaded free Kindle books. Now you still need a credit card for other digital products, but eBooks are an exception. And, of course, the first book I bought was a collection of journaling prompts. I also bought a collection of essential oil diffuser recipes. Each book cost under €3. I do need to make sure I won’t spend my money compulsively, as a search for “journaling prompts” in the Kindle store returns over 3,000 books. Then again, a lot are free at one point. For this reason, I acquired three new books of journaling prompts over the past few days, only one of which I paid for.

Lastly, if we were having coffee, I’d ask you all to cheer on my oldest niece as she starts school on Monday. She will be four on the 10th. I need to pop into the toy store tomorrow to buy her a present, as ordering something online won’t get it here on time for me to send it on to her.

How have you been?

August 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month, so it’s time for my monthly reflections. Overall, August was slightly better than July, but it’s still been quite a tough month. Honestly, it’s been quite a tough year so far.

My spouse’s car broke down a few weeks ago, so we weren’t able to see each other each week this past month. Last Sunday, though my spouse did visit me, it was in my mother-in-law’s car. Thankfully, the car has been fixed for now.

My mother-in-law also only visited me once this past month despite there being five Tuesdays in August and her normally visiting me every other Tuesday. On the 1st, she had to work and on the 29th, a new horse was delivered. The story behind her having gotten a new horse is a bit sad, in that one of her horses, Remco, passed away suddenly last month. I mean, he was already crippled, so could only step around a bit, but still his death was unexpected. The new horse is a young mare called Marrit.

Now on to my own life. It’s been boring. I’ve been mostly waiting to find out more about the move. Last Sunday, my support coordinator told me that I’ll move within six weeks, probably sooner. I honestly have mixed feelings about the whole thing. Obviously, I try to remind myself it can’t be worse than here, but what if it isn’t any better either? Will I be expected to magically flourish there just because it’s not this home? I’m hoping, of course, that I will eventually flourish, but this isn’t going to happen magically. Indeed, this requires work, both on my part and on the part of the staff.

I also, like I mentioned yesterday, have had an increase in flashbacks to my childhood trauma. Of course, I could hope this will lessen when (if?) I’m in a calmer environment, but still I’m pretty sure they won’t disappear without support.

In the health department, I’m doing pretty well. I had a meeting with the dietitian yesterday and she asked me not to lose any more weight. I’m not sure how to do this, truthfully, as I’m eating well overall. There’s also this thought at the back of my mind telling me that I could still lose 10kg and be at a healthy BMI. Besides, I still have quite a lot of abdominal fat and watched some YouTube videos a while back that mentioned the dangers of internal obesity. Then again, the dietitian told me there’s very little I can do about this. The YouTube videos tell me otherwise, but then again my healthy voice is telling me (or at least I’m assuming it’s my healthy voice) that following those YouTubers will just lead to extreme restricting, which will probably just cause me to relapse into bulimia. I’m still struggling intensely with all the things diet culture tells me about what to eat and not to eat to preserve my health and, at the same time, my dietitian has one foot right inside diet culture as well. After all, my food plan was a classic weight loss plan up until I reached a healthy BMI. Heck, the very fact that I mention the BMI here shows how much I’m into diet culture. I want to unlearn this, but I’m not sure how.

With respect to other health factors, I’m doing okay. I walk more than I did in July, have been swimming again and went on the stationary bike occasionally. That being said, I do worry about a decline in my mobility. This could be the YouTube videos again, which told me a loss of arm swing could be a sign of overall decline. I have absolutely no idea whether my arm ever swung at all though. That being said, my drop foot seems to be getting worse too.

I did finally get the eczema on my legs treated. I also got a slight infection on the skin of my earlobes, where I had my ears pierced in early July. I’m currently on a course of an antibiotic ointment, so hoping that’ll work.

In the crafty department, I haven’t been very active. I did create a lot of unicorns out of polymer clay, but they were all done using cutters, not sculpted. I intend to paint them and use them as gifts for my fellow residents when leaving this home.

I’m linking up with What’s Been On Your Calendar? (#WBOYC).

Opening Up About My Trauma

Posted on by Astrid

Last Monday, I was going for a walk with my one-on-one for the moment when we saw a few clients and staff she knew (she’s a temp worker). She wanted to “say a quick hi”. That turned into a fifteen-minute conversation between her and one of the other staff, which eventually turned to clients with severe challenging behavior being taken on outings off grounds and then, when they act out, staff being filmed by bystanders when restraining the client. This discussion triggered me, because it led to flashbacks of the times I’ve been “guided” (as staff call it) to my room. More like physically moved by several staff at a time, and the fact that I wasn’t officially restrained (because that probably only counts when you’re pinned down to the ground), is solely due to my lack of physical strength.

I asked the staff, admittedly more curtly than I should have, to not have these discussions in my presence in the future, as it was triggering me. She told me I was making it all about me and if I wanted to offer an opinion I should’ve made sure I listened to the whole thing because now I was twisting the truth. I told her about the time I was shoved to my room and staff threatened to lock me up in there. “You probably deserved it,” was her response.

This led to a whole chain reaction of triggers, in which I started to doubt the validity of my trauma-related symptoms. Didn’t I deserve the harsh punishments my parents gave me? I know at least back in my day an “educational spanking” was legal. In some U.S. states, child abuse isn’t even child abuse if it’s used as punishment.

I can’t go into the details of the punishments I endured as a child, and I’m pretty sure they’re not necessarily illegal. Does that mean they can’t have caused me PTSD?

That evening though, I was having intense flashbacks and decided to open up to my staff for that moment. She happened to be one of the staff who’d shoved me to my room on Friday and threatened to lock me in there. I had to admit – even though I don’t believe it – that I deserved to be physically moved to my room. I mean, the reason was my dropping the F-bomb while in the communal room (and then refusing to go to my room on my own when told to), which, well, truthfully staff do all the time.

After I’d given examples of the way my parents treated me, my staff seemed quite shocked. I honestly don’t understand this, as she restrains clients everyday and never even cares about the impact this has on them. I mean, I know, staff restraining clients is legal, but then again does something have to be illegal to be traumatic? And if so, where’s the boundary between an “educational spanking” and child abuse? Or does it have to be unwarranted? In that case, I must say, my parents acted out of a need to show who’s boss because they’d felt powerless over my behavior. I did, indeed, try to excuse my parents’ actions by explaining about my own behavior. The staff didn’t seem impressed.

I know, in my heart, that the truth is that restraints can and do traumatize clients too. I know I experienced trauma while in the psychiatric hospital because of being locked up in seclusion against my will. I know I still experience emotional trauma. And, of course, I’m more sensitive to this due to the trauma I endured as a child. But it isn’t black-or-white. And this is confusing.

Act Your Age, Astrid?!

Posted on by Astrid

Hi everyone. Today’s topic for Sunday Poser is the idea of acting our age. Society expects us to act a certain way depending on our age – not just behave quite responsibly past our mid-twenties or so, but also to wear certain clothes, listen to certain music, enjoy certain activities, etc. depending on our age. Do we generally conform to that expectation? A quick read through the comments on Sadje’s original post gave me the impression that, no, we don’t. And I personally certainly don’t.

With respect to the responsible behavior part, I have to admit, unlike the other participants, that I’m very much a child – no, a toddler – at heart. I still have significant temper outbursts, for instance. In fact, on my thirtieth birthday, I had an intense outburst and was adamant that I could no longer have those in my thirties. Well, my brain wouldn’t listen. It’s said that my emotional developmental level is comparable in many ways to that of an infant or young toddler.

In other ways, I’m still a child at heart too. I love unicorns, going on the swings at the institution playground and stuffed animals. I even talk to my stuffed animals at times.

Then in other areas, I do act my age or even older. I’m not keen on using my phone when doing another activity and get annoyed when my staff get constantly distracted by text messages. I don’t really do social media except for Facebook (which probably makes me appear really old). It isn’t that I haven’t tried, but I was rather late to the party with most platforms.

Of course, the fact that I use the singular pronoun “I” here, is a bit misguided too, since we’re a plural system and there are parts of all ages. This is probably one of the reasons that I can talk to my stuffed animals happily one moment, have a temper tantrum the next and be involved in an “old-fashioned” hobby later. I do sometimes wonder whether my parts are genuine alters or whether something like internal family systems could help them too. Then again, I’m not in therapy, IFS or otherwise, anyway.

Poem: Home Is…

Posted on by Astrid

Home was
At my parents’
Who were there and yet weren’t there for me
Hurting me in ways I feel I can’t express
It wasn’t safe
Or maybe that’s just me

Home was
On my own
Barely holding on by a thread
Surviving but that was about as far as it went
It wasn’t doable
Or maybe that’s just me

Home was
In the mental hospital
Where I stayed for nearly a decade
Only to be kicked out again
That wasn’t forever
And that wasn’t me

Home was
With my spouse
Again, barely holding on by a thread
Managing life by sleeping and panicking
It didn’t work out
But maybe that was me again

Home then was
In the care facility in Raalte
About as unsuitable as they come in theory
But it was near-perfect in reality
And yet, I left
And that was me (sort of)

Home then became
My current care home
With harsh staff, chaotic clients and poor quality of care
I wasn’t abused (not really), but that’s about as far as it goes
It doesn’t feel safe
But then I wonder, isn’t that just me?

Maybe soon home will be
The future care home
The big unknown
Will I feel sort of happy there?
No-one can tell
But it’s up to me

To make myself feel at home

This poem may sound a bit self-loathing. It isn’t intended this way, but I couldn’t express as concisely how I feel about my various “homes” and particularly the way people have told me I approach them (ie. the idea that I’m never satisfied anyway because I’m looking for perfection) without sounding this way. This is definitely not my best poem, but oh well, it shows my conflicting feelings about the fact that I’ve never felt “at home” anywhere.

I’m joining dVerse’s OLN. I’m also joining Friday Writings. The optional prompt is “muscle memory”. I guess repeating that I don’t feel at home anywhere counts.

Decisions Made for Me

Posted on by Astrid

Hi all. I’m joining Denyse’s #WWandPics once again. This week, she talks about the letter D words that relate to her, among which “decisions”. I wanted to write about decisions too, but this time, about the reality of decisions being made for you. This may not happen to non-disabled adults much, but it happens to me all the time.

Like with my upcoming move. I know next to nothing about my future care home and, when I told my assigned staff that this frustrates me, she pointed out that I’ll move there anyway so how would giving me more info help?

Honestly, I wish I were given some way to have any level of input into the process. I know the reason the powers-that-be have decided to give me no choice is probably because they feel I’m too critical anyway. They believe I’m looking for the perfect home, which they and I know doesn’t exist given my rather complicated care needs.

They always tell me that I wanted to leave the care facility in Raalte, which was near-perfect compared to my current one. I did, in a way. That is, I wanted to have a discussion with the behavior specialist to explore the possibility of me finding another care home. That’s not the same. And they were the ones not being up front with me about all the things I’d lose if I wanted to live on institution grounds and have fellow clients with whom I could speak. They may’ve technically allowed me to make the decision to move here, but they gave me the bare minimum amount of information to make that decision.

Now they’re not letting me make a decision at all. It makes me feel intensely powerless and that’s a really distressing feeling. And who will be in trouble if my behavior doesn’t improve? Yup, me. Some staff have come to call me spoiled, in fact, so the burden is on me to show them I can handle whatever this new home has to offer. If I can’t, well, too bad, then I either have to learn to live with the decisions made for me or find myself another way to cope.

The Wednesday HodgePodge (August 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here goes.

1. What’s your earliest memory?
My third birthday. My paternal grandma brought me a doll from Berlin and my father taught my sister and me the German word for “doll” (“Puppe”). My sister and I, of course, laughed really hard about this, as “Puppe” sounds just like the Dutch verb for “poo”. The doll, by the way, is named Roza, because my father also said Rosa (but then again, as a child I had no clue how to spell it) is a German name.

2. What’s something about you today that the old you would find surprising?
The fact that I live in an institution. Until I was about 25, living in an institution was my worst nightmare.

3. Do you like to fish? Are you a fish eater? Favorite fish (to eat)? Favorite way to prepare fish?
I’ve only been fishing once and found it intensely boring. Then again, I can’t see so that takes away what little fun I imagine there is to fishing.

I do like fish, but usually just the once with the not-too-distinct flavor. The only exception is tuna, which I love and would probably be my favorite fish to eat. When my sister turned vegetarian and showed my parents info about the unethical consequences of tuna eating, they for a while refused to buy it. I got really upset.

4. What’s your biggest first world problem?
I’m not sure whether my unsuitable care home counts as a first world problem. I guess it does, since most disabled people in developing countries don’t have a choice where they live at all. Neither do I at this point, in the sense that I know next to nothing about my future care home and am told that since I’m moving anyway it’d be pointless to give me more info. I have a post scheduled for tomorrow on this topic. In any case, I’m still fortunate in many ways I guess.

5. What one word would you use to describe your year thus far?
Chaos.

6. Insert your own random thought here.
I almost broke my record of active calories burned on my Apple Watch today. Honestly, I think relatively speaking I already broke it, since my last record dates from September of last year and I weighed 12kg more than I do now, so burned off more calories with the same physical exertion. I still need 20 exercise minutes to break my exercise record (which I set on the same day), but I won’t do that. Those 15 active calories I still need to burn for my movement record should be doable though. Today, unlike the time I set my old record, I did a variety of workouts: walking, swimming, the stationary bike and dancing.