Things That Made Me Smile (February 6, 2023) #WeeklySmile

Posted on by Astrid

Hi everyone. I had a rather difficult first half of my day. Slept rather poorly because of some worries about my care situation and, while trying to talk through my thoughts with a staff, got even more frustrated. The evening isn’t going great either: lots of random staff switches and a fellow client who spiraled into crisis when I was in the living room. What better time then the present to focus on the positives? As one of my teachers once said, you can only be happy once in your entire life and that’s right now. For this reason, I’m joining Trent’s #WeeklySmile. Here goes.

This afternoon, the new student staff took me on a walk. First, we went to the cafeteria in the main office building to get a hot cocoa for me and latte macchiato for her.

Then, we walked some more, while chatting about random things. At one point, we got to talking about positive thinking and she told me to throw all my negative thinking onto the nearby highway to be run over by trucks. I told her an elaborate story about how my husband, who is a truck driver, would run over all my negative ideas on his way to Hoorn, which is his default route, and catch unicorns for me while there to fly all positivity my way. After all, the symbol for the city of Hoorn is the unicorn.

Then we started singing children’s songs. I sang (well, in my out-of-key way) the English version of “The Wheels on the Bus” to her, while she taught me some modern Dutch children’s songs. We also remembered an older one that I happen to have sung at a Kindergarten contest.

The rest of the day was stressful once again, but I cherish this moment.

#WeekendCoffeeShare (February 4, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today, even though I’ve long had my last cup of coffee for the day. No soft drinks or vitamin water for me today either. In fact, I actually now realize I forgot to ask my one-on-one staff for chips this evening, which we usually get on Saturdays. Oh well, the scale will thank me (I hope). Let’s have a drink and let’s catch up.

If we were having coffee, first I’d confess that I still write “2022” rather than “2023” as the title of my coffee share posts and other dated posts regularly. I don’t think I did this for so long during previous years, but “2022” comes out so easily. Oh well.

If we were having coffee, I’d ask about your weather. Ours has been mixed. Early in the week, we had some rain, but later, we’ve had nice winter weather. Daytime temperatures have usually been at about 8°C.

If we were having coffee, I would tell you that, yesterday, I got in almost two hours of exercise according to my Apple Watch, most walking and a little dancing. “Dancing”, in my book, is usually just walking with some arm swaying to the tune of some upbeat music. I got in over 13K steps. Today, I got in nearly 11K steps too.

If we were having coffee, I would share that, like I said in my post on Wednesday, the home’s kitchen renovations are over with. On Thursday, the living room furniture got moved back to its proper place. I notice I was almost used to the temporary arrangement.

If we were having coffee, I would proudly announce that the theme for this month’s challenge in the Dutch polymer clay Facebook group is unicorns. It was chosen in part by me. I am looking forward to showing the blue unicorn that’s been waiting to be cured in the oven since Tuesday.

After all, like I said last week, someone from that group sent me some Hotfix rhinestones to try to decorate my clay sculptures with. When they arrived on Tuesday, I immediately tried them on the blue unicorn. I can’t wait to show her, the group and the world. Let’s hope the rhinestones won’t fall off.

If we were having coffee, lastly I would tell you that I had another nice visit from my mother-in-law on Tuesday. We went to Burger King to have lunch. Our food was lukewarm by the time it arrived, but that’s almost to be expected with burger chains these days. We also went to an arts and crafts store, but I decided not to buy anything, as I was rather overloaded already.

See, I did it: I created a coffee share post without complaining about my care home situation. It isn’t because it’s better. Well, today is a pretty good day for once. Let’s celebrate that and be thankful. But still all please pray I can get out of here.

Chasing Perfection? #SoCS

Posted on by Astrid

Whenever I think of how bad I feel about my current care home situation, I am reminded of two seemingly contradictory statements from my staff. One is that I think every place is horrible anyway. The other is that I had “gold in my hands” at my old home. These seem contradictory, but really aren’t. They are two sides of the same coin: I am thought of as chasing perfection.

There may be some truth to this idea indeed, but that doesn’t negate the fact that one can learn and this place is definitely bad. It isn’t like I just need to accept what I have now just because I can’t have it all. Besides, if people – the powers-that-be, such as the behavior specialists – just had been honest with me about the fact that, indeed, to live with people of higher IQ would mean more expectations and less support, I’d have declined to move. That was, after all, the comment I put at the bottom of my “housing profile”.

And it isn’t like I chase perfection everywhere. Or honestly that I thought, at the end of the day, that this place would be perfect. Yes, when I read the home’s profile on the website, I thought it’d be, but that leaflet is either outdated or simply incorrect. But when the behavior specialist for my old home explained some things about the home, I did realize it wasn’t perfect. Same when I visited here twice. But then again, perfection doesn’t exist. And I was willing to make some sacrifices to live on institution grounds and have fellow residents I could chat with. But not everything I had: all the daily structure, all the useful day activities, all the proper help with ADLs and, interestingly, behavioral regulation too. Because, despite the fact that this home is an intensive support home, which means the residents have significant challenging behavior, whereas my old home was a care-based home, I see more people managing huge wildfires of escalating behavior without realizing the proverbial cigarettes they’ve thrown onto the ground themself.

This post was inspired by today’s prompt for Stream of Consciousness Saturday: “perfection”. I am sorry for being repetitive yet again. This whole care home situation is getting old, but I wish that meant I’d actually adjusted to it. I’m not sure I ever will.

It’s All a Blur

Posted on by Astrid

It’s all a blur, this life of mine. Moments, days, weeks, months – maybe soon years, who knows? – roll into each other. I don’t like it one bit, sorry not sorry.

I may not be able to fully lay the blame on my current care home with its chaotic and yet oh so boring routine and no day activities whatsoever. I might be able to create my own routine that would somehow differentiate between mornings and evenings, weekdays and weekends, summer and winter. If only I knew how.

This post was written for this week’s Six Sentence Stories link-up, for which the prompt word is “blur”.

My Life Story Isn’t Over Yet

Posted on by Astrid

Hi all. Today I’m joining Tranquil Thursday. This replaces Throwback Thursday while Lauren is dealing with her health issues. This week’s topic is (un)written aspects of our life story.

I am 36. On average, this means I’m about at midlife or slightly before there. This should mean about as much of my life story has been written already as the part that’s still unwritten. I struggle to see it this way though. In my mind, I’m perpetually in end-of-life mode.

Especially since moving to my current care home, I no longer make plans. I blame the chaotic situation here, but I’m not sure that’s all there is to it.

I do look back at a life that has been hard, but it definitely has had its positives. Meeting my husband and getting married is an absolutely amazing thing about my life.

As a teen and young adult, I always wanted to write and publish my autobiography. I obviously never did. It had as its working title “Some former preemies will go to university”, after the title of an article in the newspaper my parents read in 2004. The article was about giving preemies born at 24 weeks gestation a chance at active treatment. The neonatologist arguing for this said that some preemies will later go to university. In other words, they’ll prove their worthiness of having been treated actively.

As regular readers of this blog will know, I received active treatment as a preemie too, even though my parents weren’t completely sure I should. I did, indeed, at some point go to university. And failed miserably. But I did sort of prove my worth. Or did I?

My life story isn’t over yet. I might indeed someday be relatively successful at life, whatever that may be. Or I might deteriorate even further than I am now. Then again, everyone deteriorates in old age. And if you need to have had a college degree and worked for 40’ish years before that in order to prove your life is worth it, human values are rather distorted.

The Wednesday HodgePodge (February 1, 2023)

Posted on by Astrid

Hi all. After a month on hiatus, the Wednesday HodgePodge is back and I’m joining in. Here are Joyce’s questions.

1. Tell us anything you want about your January.
It was such a looong month. Oh, that’s a cliche, but who cares? I shared my monthly reflections yesterday.

2. Lake Superior State University posts a list each year of words they think should be banished from the Queen’s English for misuse, overuse, and/or general uselessness. The 2023 list includes GOAT, inflection point, quiet quitting, gaslighting, moving forward, amazing, Does that make sense?, irregardless, absolutely, and it is what it is.
Which of these words/phrases do you use regularly? Which of these words would you most like to see banished from everyday speech and why? Is there a word/phrase not on the list you’d like to add?
I use “absolutely” and “amazing” a lot. I also have a lot of other words I use way too frequently. It’s probably because my written English isn’t as good as I’d like it to be. As for a word or phrase I’d like to see banished most out of this list, it’d be “it is what it is”. That’s just such a useless statement. By the way, I have an inkling “GOAT” when spelled in all-caps means something other than the animal, but I have absolutely (see, here I go again) no idea what it means.

I don’t know which words or phrases I’d add to the list in general, but I’d erase “obviously” and “definitely” from my own personal vocabulary if I could (and replace them with a dozen synonyms). Oh wait, I could do that, but I’m too lazy to use my thesaurus.

3. February 2nd is Groundhog Day. What’s something that feels repeated in your life right now?
Wow, this HodgePodge is a true English lesson! After all, I had no idea what groundhogs even were or what they had to do with repetition. That being said, my days at this point in my life are one giant string of repetition, truthfully. In a way, they’re very unpredictable, but since there is no rhyme or reason to my weeks, the days all roll into each other.

4. What’s a food you love that’s named after a place?
I really don’t know all that many foods named after places. I was going to say “mexicano”, which is a type of rectangular mince snack, but that would be named after the ethnic group. Besides, the mexicano has nothing whatsoever to do with Mexico or Mexican food.

5. What’s the best season of the year to visit your part of the country? Tell us why.
Spring or summer. I live in a part of the Netherlands where the summers can get hotter than, say, in the coastal provinces. However, there’s a lake quite near where I live now, which is good for swimming (we used to go there when my family still lived in Apeldoorn). Spring would also be a good time to take walks around here, I guess, but I haven’t tried that yet as I moved here in the fall.

I wouldn’t recommend visiting the Netherlands during winter at all, as we hardly get snow and, even if we do, we don’t have mountains so it’s no use for skiing.

6. Insert your own random thought here.
My care home’s kitchen renovations are done! They were actually finished nearly a week early. I’m so happy about it, as it means I can finally cure my polymer clay creations in the oven. It also means the living room furniture will be moved back to the actual living room soon rather than all of my fellow clients gathering in the hallway right across from my room. That’s been quite disastrous. Honestly though, I still do want to leave this care home, as the real problems aren’t temporary.

January 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone on this final day of January. Last year, I loved looking back on each month as it related to my word of the year. I didn’t choose a word of the year for 2023. Not sure why, but I just couldn’t find one. I however do like these monthly reviews, so I’ll continue them. The monthly word of the year linky has also changed to #WBOYC, which is an acronym for What’s Been On Your Calendar. I’m joining in with this linky today for my monthly reflections.

This month, I started out with mixed feelings of hope and fear for the coming year. Just before New Year’s, my assigned staff had introduced the piece of paper with agreements re my care on it, which was slightly disappointing to me because of it being easy to interpret in multiple ways. As the weeks proceded, I found out that, indeed, it didn’t do much to improve my care. In fact, I still live moment-to-moment, not because I can’t get through each moment due to my mental health, but because the staff and home in general are so unpredictable.

Several weeks ago, I decided I definitely want to find another care home. This, obviously, requires a talk with the behavior specialist and support coordinator, but, so far, my support coordinator hasn’t responded to requests to share when she is available. I have it in my head she’s decided to ignore me until I shut up about wanting to leave. After all, several staff have started to talk nonsense about baby steps towards adjustment, and I’m pretty sure they don’t mean the steps towards adjustment should come from the staff. Even though I do experience good enough days here and there, I won’t shut up though until structural changes mean good enough is going to be the norm, and I’m sure this isn’t going to be here.

In other news, I had three visits from my mother-in-law during the month of January. I also saw my husband almost each week – missed only one because I had a cold.

I started working with the book The Artist’s Way at the end of the month. I’ve only just started with Morning Pages and am taking the program at a slower pace than is recommended, partly because I’m a slow reader and partly because I need to modify the Artist’s Dates to suit my needs. For example, since I don’t handwrite my Morning Pages, I have no reason to give myself a sticker on the envelope each day I completed them, and I can’t use regular stickers anyway. However, I saw 3D unicorn stickers and want to buy those and stick one on my laptop for each day I complete my Morning Pages for a week. Of course, since they are sold online, I may need to have them delivered to my in-laws because my care home’s address isn’t always recognized by delivery people. I’ll get to that tomorrow.

I wasn’t as crafty as I’d like to have been, but did slightly expand my horizons where it came to polymer clay, in that yesterday I started on a unicorn in a lying-down position and today I tried to decorate my latest standard, sitting unicorn with Hotfix rhinestones.

I didn’t write as many blog posts as I’d hoped during January. Of course, there was #JusJoJan, but even when the prompts did speak to me, I often didn’t write. I am still considering participating in #Write28Days in February, but honestly haven’t written anything for it. Not that I had any of the previous years I took part either, but then I was more motivated.

I did for the umpteenth time revive my Instagram account. This time, I’m actually finding some joy in it, because I actually find that I can interact with some people on there.

In the health department, January was a true mixed bag. I did get moving sufficiently, particularly walking, but healthy eating was a huge struggle. Over the month, I maintained my weight, so still 3kg to lose for me to be at a healthy BMI.

Lastly, I did attend the cerebral palsy online meeting for the provinces of Gelderland and Utrecht this evening. It was good. There will be a live meeting in March, so I’m hoping to go there too.

#WeekendCoffeeShare (January 28, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of January. I’m joining #WeekendCoffeeShare today. It’s 9PM here, so I already had my last cup of coffee for the day about two hours ago. I also tasted a new drink I think I like: vitamin water. I am not under the impression that there’s all that many vitamins in it, but who cares? Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather. Ours has been cold, with daytime temperatures barely above freezing point. It’s not been raining or snowing though and today in fact it was quite sunny.

If we were having coffee, I would ask how you all are doing. I’m still struggling in my care home. Last week (or the week before, I can’t remember), I hit another low point and my mother-in-law sent an E-mail to the behavior specialist telling her I basically don’t want to stay here. The behavior specialist was going to try to schedule a meeting between me, my mother-in-law, her, my assigned staff and the support coordinator, but I haven’t heard anything so far.

If we were having coffee, I would tell you that I’ve finally been working with polymer clay again. It’s been a while. On Wednesday, I created a bull’s eye cane. That was too frustrating for me and I nearly gave up on polymer clay altogether because of it. Thankfully, in the Dutch polymer clay group as well as an unrelated FB support group, people encouraged me to continue with what I can do well, which is sculpting. This helped me to get moving and create yet another unicorn. Oh well, it’s the same style as all my other unicorns, but I intend to decorate it with Hotfix rhinestones.

I originally intended to go to a store for Hotfix products near here with my mother-in-law on Tuesday. Then someone from the Dutch polymer clay Facebook group offered to send me some samples to try. That’s so kind of her!

If we were having coffee, lastly I’d share that I haven’t had a healthy dinner all week. The reason is the fact that the care home’s kitchen is being renovated and so we can’t use it at all. The only day I had the option of a healthy dinner was today, but I can’t stand soup and certainly not pea soup. For clarity’s sake, there is a kitchen the staff can use at the day center, but all week except today they for whatever reason chose easy-to-whip-up but unhealthy alternatives such as pizza delivery, microwave pancakes or bread with Russian salad.

How have you been?

Ideal Isn’t Real

Posted on by Astrid

Today is the day the word I picked for #JusJoJan was assigned to, so I’m pretty much obliged to write a post. My original choice for a word was “Home”, but I made up my mind as I wrote my comment on Linda’s post and chose “Ideal”. My plan was to then write about my ideal care situation.

I am not sure I can do it though. An ideal situation, after all, doesn’t exist and chasing it may mean I lose sight of the things I could appreciate in what I already have. That’s possibly what happened with the move to my current care home, much as I struggle to admit it.

Of course, I knew there were going to be drawbacks to this care home, but I minimized them in my mind. When, back in like late 2021, I read up the information on this care home on my agency’s website, it sounded ideal. In fact, I remember at one point telling my staff and some people on an E-mail support group I belong to that it was my dream care home. But that’s judging from a promotional webpage, not reality.

Then when I actually got the opportunity to go here, what I found out on my visits here indeed revealed some more negatives. However, for the most part, these were vague “gut feeling” negatives, not facts. A factual negative was the fact that staff here don’t tell us clients who will be on shift the next day, reasoning that they might fall ill. “But we all come back,” the support coordinator reassured me, “and if we don’t, we’ll tell you.” Well, the one time a staff left so far, I didn’t find out in advance.

Maybe, looking back, there were clearer signs than just my gut feeling that the dream care home was going to turn into a nightmare. I am not sure. Maybe I didn’t ask the right questions. Maybe the staff – purposefully or not – avoided answering the real questions, focusing instead on details. Either way, I can’t help it now. What I can do is never believe something is going to be ideal again. Ideal isn’t real, after all.

Gratitude List (January 21, 2023) #TToT

Posted on by Astrid

Hi everyone. I’m once again (or still) struggling a lot. Each time I think I see a glimmer of hope, it gets crushed one way or another and the bottom line is that I’m probably stuck in this dark pit for a while still. For this reason, I thought I’d do a gratitude post once again in order to remind myself there are still positives out there. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful for Apfelstrüdel. This is, or so I believe, a German type of baked goods with apple and cinnamon. Last Sunday, my husband and I went to have lunch at La Place, a type of restaurant, and their Apfelstrüdel was on sale. Even though it’s sweet, I decided to have it as my main part of the meal.

2. I am grateful for a trip to Action, a discount store, with my husband on Sunday. I bought cleaning wipes, toothpaste and crocheting supplies.

3. I am grateful my assigned staff is back at work after being on vacation for a couple of weeks.

4. I am grateful for another visit from my mother-in-law on Tuesday. It was good.

5. I am grateful for apples, bananas and blueberries. We didn’t have fruit during most of the week, so on Sunday, I bought apples and bananas when at Aldi with my husband. Then on Tuesday, I bought blueberries. I am grateful that, on Tuesday, my mother-in-law reminded me to buy my own peeling knife. You see, the care home’s kitchen is being reconstructed, so all kitchen supplies are in boxes. Had I not bought the peeling knife, my staff wouldn’t have been able to peel and cut my apples.

6. I am grateful for sleep. Over the past week, most days, I got at least reasonably good sleep.

7. I am grateful my cold, which I’ve had all week, seems to be getting a little better. At least I’m not sneezing like crazy anymore.

8. I am grateful my husband ordered new walking shoes for me, to be delivered to my in-laws today. He isn’t coming by for a visit tomorrow because of my cold symptoms, but will bring them along next week.

9. I am grateful a staff helped me manage the chain stitch of crocheting today. I already had some practice with it before, but it was always hit and miss. I am hoping to learn some more stitches someday once I get confident working with this one.

10. I am grateful for a long walk this afternoon. I am also grateful that, despite having limited energy this morning, I was able to have a relatively good time for most of the day.

What are you grateful for?