Reminders When I’m Feeling Like Life Is Pointless

Posted on by Astrid

Hi everyone. Like I said on Saturday, I’ve been struggling lately. It’s been so bad that I’ve actually been considering talking to my doctor about options for medication. I mean, I’ve been tapering my antipsychotic aripiprazole (Abilify), which is sometimes used as adjuvant medication to treat depression. However, I honestly struggled with mild depression already before starting my taper.

That being said, I really need to remind myself of the things I have in life. For this reason, I started a list of positives and negatives for each day that I’ll send to my second assigned staff weekly. She is more socially adept and empathetic than my other assigned staff, which is why I have her to discuss my personal issues with. Anyway, I allow myself to list the negatives too, which sometimes outweigh the positives, but the last few days, the positives have outnumbered the negatives.

For instance, today I had as a positive the fact that I finished a pair of polymer clay earrings. Okay, I haven’t yet seen how they turned out, but who cares? The process is more important than the outcome. I also listed as a positive the fact that I had a good online meeting with the regional branch of CP Netherlands, the Dutch cerebral palsy alliance.

I listed one negative, ie. the fact that I got slightly stressed out when my male assigned staff asked me some questions about swimming. I’m supposed to go swimming in a group on Thursdays but this hasn’t happened yet due to staffing issues. I have tried to jump through all kinds of hoops to accommodate the staff and felt like I was being pushed around. Thankfully, tomorrow (Wednesday), it turns out, I’m allowed to try out swimming with my fellow clients.

I think that, when I’m in a downward spiral and particularly when I feel like my world is becoming smaller and smaller and life is pointless, I need to remind myself that there are still lots of things I can do even though I’m at home a lot. I could read, watch YouTube videos, blog, scroll on social media, do all kinds of crafts. Honestly, in fact, when a staff is entertaining, even a dice game can be enjoyable. And the entertaining factor is a two-way street. After all, I noticed this with a staff yesterday with whom I hadn’t gotten along a few weeks back. He was about as unengaging as could be and left 15 minutes early, but then again I treated him badly first by refusing to explain my routine because “it’s not my job to train temp workers”. It isn’t, technically speaking, but I could’ve been kinder. Yesterday, he actually made our game of Yahtzee fun.

I do still think my world could be enriched. I also feel this isn’t a cure-all for my depressed mood. Some of it comes down to grief, too. Grief for having lost the support I had in late 2021, when I was 95% sure I wanted to stay in Raalte. “Make that 98% please,” the manager said. Not even half a year later, it turned out, either she or some other people involved there were glad I was asking to leave. That angers and saddens me to this day, but wallowing in these feelings won’t help. Involving myself in positive activities might.

I’m joining #WWWhimsy.

#WeekendCoffeeShare (April 13, 2024)

Posted on by Astrid

Hi everyone. How have you been? I’m joining #WeekendCoffeeShare today. I’m writing this post in the afternoon on Saturday, but might not finish it until the evening as I’ll try to fully enjoy my one-on-one support time while there’s staff I get along with well in the home today. It’s a little warm for coffee, so if you’d like a cup of that, fine by me, but I could also offer you orange and tangerine-flavored Dubbelfrisss. I also should still have a couple Mars ice cream bars in the freezer. Let’s have a drink or ice cream and let’s catch up.

If we were having coffee (as I always say), first, I’d talk about the weather. It’s been on the warm side for April here. Last week Saturday, the daytime temperature even rose to 25°C. Yesterday and today, we got daytime highs of 21 and 22°C respectively. The rest of this week, the temps have been lower and we did get some rain. Next week, we’re supposed to get daytime temps barely above 10°C, which I don’t like. However, that’s probably closer to normal.

If we were having coffee, next I’d tell you all that I’m still going strong keeping up with my physical activity by walking everyday. So far, I’ve closed all three of my activity rings on my Apple Watch each day since the beginning of the month (and possibly a few days at the end of March too. I’m aiming for a perfect month with respect to my movement ring at least, which I haven’t had since last September.

If we were having coffee, I’d share that I finally got the long-awaited orthopedic shoes. They fit well, but the brace that’s in them doesn’t effectively help my really bad drop foot and as a result, the left shoe got noticeably damaged after only two fifteen-minute walks.

If we were having coffee, I’d tell you that, last Sunday, my spouse and I together worked on a polymer clay project. I’d proposed we create a unicorn, but my spouse came up with the idea of crafting a triceratops (“unicorn dino” with three horns) instead. It was fun, but definitely an exercise in letting go of my need for control.

Polymer Clay Triceratops

If we were having coffee, I’d tell you that the rest of the week was quite hard. I’ve been struggling with feeling quite depressed lately. I have been feeling like my world is becoming smaller and smaller with all the things I cannot do. It’s been more so on my mind lately given that many of my fellow residents are going on the home’s yearly week-long sleepaway camp at the end of the month and it’s not even been asked to me directly whether I wanted to go too. Rather, I overheard the staff talking about the camp a few months back and mumbled about it not appealing to me and that’s the end of it. I’m supposed to stick to my day schedule, which currently consists mostly of walking around institution grounds and playing dice games. Some staff say I might be able to be in the communal room more, but to be honest I don’t care about being in the communal room just sitting around.

Yesterday, I tried making a cheesecake with my assigned staff in the communal room but got overloaded by one of the other clients (who will stay here during the camp as well). It led me to spiral into a massive emotional outburst. After all, now everyone tells me I’ll never have a better life anywhere anyway so I’d better accept the life I have now. Why didn’t anyone tell me this two years ago? The answer is simple: at least some of the people at the care facility in Raalte secretly wanted to get rid of me. This is intensely saddening to me.

If we were having coffee, I would end on a positive note though by saying that one of the staff who told me to accept my life yesterday, offered to take me on a short car trip to Deventer this afternoon. We had a cup of coffee (I decided to buy both of ours) and walked around the marketplace, where the staff bought me a stroopwafel and I bought a small serving of garlic-filled olives.

#WeekendCoffeeShare (February 24, 2024)

Posted on by Astrid

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

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

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

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

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

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

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

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

My Dream Room

Posted on by Astrid
Daily writing prompt
Write about your dream home.
View all responses

When I saw this prompt, I was pretty sure I had written a zillion posts answering this very same question on here already, but when I did a quick search on my blog, I found just one: a post I wrote in 2021. This was long before I decided to move out of Raalte and then move out of the intensive support home again. Then again, neither of those moves had to do with the interior of the homes I resided in.

In fact, my room in Raalte was the best room I’ve had in a care facility so far, except for maybe my apartment in the independence training home. My current room, though not bad, is one of the worse ones in terms of its set-up. For one thing, it’s the very first room from the living room. This has its positives, but a huge negative is the fact that the living room television is literally set against my room’s wall. I’m not complaining – when I came into care, I never sought a dream home. I sought reasonably good care.

Now, to actually get to the point, I’m going to share some things my dream home would have.

First, it’d not be large. It’d not be a home at all, really. More like a studio. After all, I already occasionally got lost in my apartment in the intensive support home. I’d like a room similar to the one I had in Raalte, really, maybe slightly larger. It’d have its own bathroom and kitchen, of course, like I had in Raalte too. It would, unlike my room in Raalte, be on the ground floor and have a door that would lead to a patio where I could sit outside on warm days.

The bathroom would be luxurious, with its own bathtub for me to relax in. The kitchen would have all the things I need to cook a simple meal with assistance, like a microwave oven, fridge, etc.

Lastly, there’d be an armchair for me to relax in. Then there’d be all my regular furniture, such as my desk, craft table, cabinet and bed. Now that I think of it, I wouldn’t want a sensory waterbed, as then the room would be either too crowded or too large for me to navigate. I’d maybe like an additional sensory room. Not yet sure of that one.

I would, of course, decorate my room/apartment/whatever. I’d have my walls painted the same pink color I currently have on my wall here at the care home. My spouse reminded me that I had originally wanted my wall here to be painted lilac. I replied that I’d already written in this post that I’d go with pink, so pink it will be. I would add colorful, handmade wall art. In fact, this might become a reality here in my current room someday in the not too distant future, as one of my staff helped my fellow residents create wall art with colorful pieces of felt and I’m pretty sure with her help I could do a similar work.

The Wednesday HodgePodge (October 4, 2023)

Posted on by Astrid

Hi everyone. It’s been a few weeks since I participated, so I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. What’s something that scares you?
Too many things to mention, although I’m not one to have many classic phobias. My main one is toxiphobia, a fear of poisons.

2. Do you care where the food you eat comes from? To what degree?
Not really, honestly. Not that I get a say in where my care home food comes from in terms of the supermarket they order from – it’s some type of countrywide supplier specifically for care agencies. However, it’s not like I’d care much even if I did have a say. I do care about having a say in the specific foods I get to eat, which thankfully I have. When it comes to organic or not and the country my food originally comes from, I honestly am too lazy and stingy to care even when I go to the brick-and-mortar supermarket in the next town.

3. What’s something you wish you’d spent more time doing when you were younger?
Be creative. I did love writing as a child and spent a good amount of time on that, but I definitely wish I’d spent more time on other creative outlets.

4. Let’s play autumn this or that….pumpkin spice or apple cider? Corn maze or haunted house? Horror film or Hallmark movie? Blanket or sweatshirt? Watch football or watch the World Series? Foliage-red, yellow or orange?
Pumpkin spice for sure. Corn maze, though I don’t care for it either (but I hate haunted houses). Neither on the movies, but a Hallmark one if I have to choose, since the reason I hate haunted houses is because I startle extremely easily and also I don’t want nightmares. Is the blanket supposed to go onto me in the same way as a sweatshirt? Then I’ll choose a sweatshirt because it’s easier to keep in place while I type. Neither on the sports thing. That is, I’ve never heard of the World Series but assume it’s sports-related too and I never watch sports. All three colors are beautiful.

5. This time last year where were you and what were you doing?
Such an intriguing question especially today. October 4, 2022 was my last full day in the care facility in Raalte. Most of my furniture was being moved to the intensive support home (my now old care home) that day, as Raalte’s transportation person was off on Wednesdays (something thankfully my staff did realize beforehand, unlike with the recent move). Can you imagine I lived in three different care homes over the past year?

6. Insert your own random thought here.
October 4, 2023. I’ve been living in my current care home for just over two weeks and am beginning to consciously or unconsciously erase my connection to the intensive support home. Honestly, I feel awful when a temp worker tells me he knows me from there. That being said, it’s not just because it could hardly get worse than there, that my current home feels like a better fit.

My (Second) Favorite September Memory

Posted on by Astrid

Hi everyone. I want to write, but honestly don’t feel like sharing about all the stressors of the last few days in my current care home. Instead, I decided to draw inspiration from Marsha’s 10 on the 10th post again and share one of my favorite September memories. My favorite of all time is of course my wedding date in 2011, but I’ve written tons of posts about that already I believe. So I’m going to share about my other favorite memory. This is only a favorite memory in hindsight, as it was intensely stressful back then. I refer, of course, to my moving into the care facility in Raalte on September 23, 2019.

I arrived in Raalte at around 1PM, which was a bit earlier than I’d agreed on I believe, but the staff who would be showing me round had just arrived. She showed me my room and let my spouse move my furniture into it. I remember we had some discussions about things that had to be agreed upon. My spouse clearly stated that I couldn’t manage my own meds, as I’d taken two med overdoses when living in our house. The staff had been kind enough to mark the door handles of my room and the living room with tape, so that I could recognize them by touch when wall-trailing.

I also got a short tour of the day center, that is, the group I’d be attending. I remember they had a hand-made banner with “Welcome, Astrid!” on it. The guy who came here in crisis last November also got a welcome banner, but I got nothing when I got here.

In the evening, when the other clients got home from the day center, we had dinner. After that, one of the staff said she was going for a walk with one of my fellow clients. I was tempted to ask whether I could join them, but can’t remember whether I did.

I remember feeling quite a bit in shock when first coming to this care home. I asked my spouse: “You don’t think it’s all stupid, do you?” I referred to the fact that the other residents were severely intellectually disabled. Maybe I’d also noticed the poo smell. This was one of the first things my spouse asked me about when I went to have a look around my current care home. Truthfully though, I don’t care about poo smell if I get proper care.

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.

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.

Trust and Trustworthiness

Posted on by Astrid

Hi all. Today’s topic for Tranquil Thursday is trust. This topic is relevant to my life in so many ways.

Maggie starts her post with a quote which says that, for there to be betrayal, there has to have been trust first. This hits home quite hard. As someone who was at least partly rejected by my parents from infancy on, I am not sure I even remember what it is like to have had that basic sense of trust babies need. It may be for this reason that I never felt particularly affected when family members passed away. Even with my maternal grandmother, with whom I was quite close, I never even felt a sense of grief.

Then again, I did feel this sense of grief when my former assigned staff back at my old care home left her job at the care agency in July of 2022. She was the first person I’d ever fully trusted in my entire life. There were others at that care home whom I trusted almost as much.

I am pretty sure I’ll never trust a professional ever again. Not because of this staff, mind you, but because of the way the staff here at my current care home handle the relationship they have with us residents. Several staff have left their jobs here without ever saying a word and then I didn’t find out until after they’d left. Yesterday a staff I’d repeatedly talked about this to, left as well and I only found out, from his colleague, at the beginning of his last shift.

You may be wondering where my spouse is in all this. Well, I do trust my spouse not to betray me – in the sense of leaving me, mistreating me, or the like -, but it’s only been over the past few months that I’ve been able to truly be myself around my partner.

I am, generally speaking, a very distrustful person. When someone enters my life, their first impression has to be really good for me to have a positive idea about them and, when they mess up, I feel very easily betrayed.

With respect to being trustworthy myself, I’m not sure. I don’t think I am very trustworthy, but it isn’t intentionally. I mean, often I struggle with distinguishing between safe and unsafe people and in this sense end up putting myself at risk as well as potentially betraying my spouse. I remember one time a fellow patient at the psych hospital offering to hold my hand when guiding me and he commented about our spouses not liking this if they saw it. I up till that point was cool with this man as a peer and I initially didn’t see the signs that I was firstly betraying my spouse and secondly also possibly being groomed.

In addition, I can be quite impulsive and dysregulated. I’ve told my spouse that I’m leaving too many times to count. I understand my spouse sees this as significant betrayal too. I know – and my spouse knows this too – that we are meant for each other, but still it probably comes across quite harsh.