#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.

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?

#WeekendCoffeeShare (January 8, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today, even though I already had my last cup of coffee for the day. I’m going to have a glass of water with my evening meds probably while in the middle of this post. Want a drink too? Maybe I can convince the staff to get you a diet soda. I can’t stand them myself and we rarely have Dubbelfrisss, my favorite drink that isn’t water, coffee or green tea, here. Anyway, let’s (pretend to) have a drink and let’s catch up.

If we were having coffee, I’d tell you that my New Year’s went okay. I went to Lobith. Like I think I mentioned, my husband ordered a waffle maker, so that we could have our own, homemade waffles. Not all turned out as they should, but we had enough of the ones that did turn out good. We spent the evening on the couch watching semi-random YouTube videos, as neither of us wanted to watch the annual New Year’s comedy performance. According to my husband, YouTube decided what we were watching, as he probably had autoplay on. By 11:30PM, both of us were too tired to wait for the clock to strike midnight and we didn’t fancy neighbors coming by to greet us either, so we went to bed.

If we were having coffee, I would share that the first week of the new year has been hard. The home has been short-staffed and many of my fellow residents have been struggling with post-holiday dysregulation. For these reasons and probably others, I am experiencing a lot of disruptions to my care again. I have had quite a few meltdowns lately. I haven’t been as severely self-harming as I was back in late October and November, but quite honestly I’m feeling almost as desperate and the only reason I’m not feeling exactly as desperate is the fact that at least on paper my care is still kind of okay.

If we were having coffee, lastly I would share that my youngest sister-in-law turned 30 yesterday. I am thankful I was able to craft a polymer clay horse for her. Well, not anything like an actual, anatomically correct horse; really just a unicorn like the ones I usually craft but without a horn. My sister-in-law’s real, living horse is called Wolympia, so I called the polymer clay one Polympia. Sadly, I forgot to take a picture before giving it to my husband to give to her.

How have you been?

2022: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.

Joy in December

Posted on by Astrid

Hi all on this chilly, rainy last Friday of 2022. Today I’m sharing my last update on my word of the year, which is “JOY”. I’m joining the Word of the Year linky as well as Lisa’s One Word link-up.

The month of December started out with something that would have brought me exhilirating joy under different circumstances but brought just a weak smile to my face now: a visit from my two former day activities staff, complete with a full-on lunch buffet paid for by them. I honestly feel a bit guilty for possibly having ruined their meal with my talks of how much I was struggling in the care home. Then again, to be fair to myself, this was just a day after I’d hit the proverbial brick wall.

The next week saw some glimmers of hope, as my now assigned staff (yay, they finally assigned me a staff other than the support coordinator) convinced me to give a new day schedule a try. This finally gave me some opportunities for crafty activities.

Then on the 23rd, I had the meeting with my now assigned staff, the behavior specialist, my mother-in-law and the mediator. This again gave me some glimmers of hope.

Oh wait, “HOPE” wasn’t my word of the year for 2022. It was “JOY”. And I found joy even when the times were trying. A helpful resource in this has been a sheet of paper with two sides on it that I fill out each evening: on one side, I can list two things that didn’t go too well during the day, but on the other, I need to list two things that did go well. Yesterday’s things that did go well included several nice walks and having finished crafting a polymer clay unicorn. After giving it its finishing touches, I just gave the unicorn to my assigned staff, who for the most part helped me create it.

Overall, the month of December definitely included some important reasons for joy. I am also generally pleased with the word I chose as my word of the year. Even though later in the year it was quite a struggle to find joy, I liked to look for opportunities for it in the ordinary.

Happy Homemaker Monday (December 26, 2022)

Posted on by Astrid

Hi everyone. Today I’m joining Happy Homemaker Monday. Okay, regular readers of this blog will know that I’m not a homemaker. However, my staff, particularly one of the student staff, are trying to get us clients at the care home more involved in the homemaking process. For example, coming in the new year, we may be able to actually help prepare our own meals once a week. (For those not aware, we do get home-cooked meals everyday here and I actually have reasonably good meal prep skills when supervised, but up till this point the staff always cook our meals because it’s quicker.) We will also get our own vegetable garden this spring.

Because we’re required to title our post “Happy Homemaker Monday” and Sandra never got back to me when I asked whether we’re actually required to be homemakers to participate, but the questions do speak to me, I’m not sure whether I’m actually allowed to link up. However, I’m just going to give it a try and if I get kicked off, so be it.

The weather: rainy most of the time and cloudy all of the time. I don’t like it, but am not sure which I find worse: this rainy but relatively mild winter weather or daytime temperatures below 0°C. Let’s just say I can’t wait for spring.

As I look outside my window: well, I have my curtains drawn as it’s evening here and I’m blind so can’t look out my window really. Oh well, I do have an outdoors light outside of my bedroom window which I can see when I have my curtains open and it’s dark outside, which it currently is. It’s probably not interesting enough for sighted people that you guys would want a picture though. Besides, no clue what setting I’d need to set my simple cellphone camera to in order to do this.

Right now I am: typing this blog post. I’m sitting at my desk in my living room. This is really the only place I can comfortably type.

Thinking and pondering: still worrying about my support coordinator doing away with everything agreed upon in the meeting we had on Friday about my care. I received the summary of what was discussed in my inbox on Saturday and it was indeed good. This means I wasn’t dreaming that everyone in the meeting at least said they were on my side. Still, my support coordinator is still on vacation and, even though several staff have been saying she can’t tear apart my day schedule, I’m still kind of worried. Planning to ask the other support coordinator for reassurance later this evening.

How I’m feeling: worried but grateful. Cautiously optimistic too.

On the breakfast plate: four slices of bread with chocolate spread. I normally eat two slices when I do eat bread, but I was in Lobith (at my and my husband’s house) and wasn’t sure I’d be back at the care home for lunch.

On the lunch plate: I had a currant bun and a regular, plain bun. I also had water and I really need to stay more hydrated.

On the dinner plate: I have absolutely no idea how to translate what we had for dinner into English. First, we had a “rundervink”, a kind of beef mince wrapped in bacon. We also had potato tarts. And the kind of salad we had, well, I’m clueless as to what it even was supposed to be. Truthfully, Christmassy (we celebrate Boxing Day as an additional Christmas day here) as it may have been, I didn’t like it. One of the positives about us clients being allowed to help meal prep, is that we finally get a real say in what we’re going to cook.

Listening to: the Healing Harps playlist on Spotify. Not currently – right now, like most of the time, I’m just hearing my text-to-speech software speak and the heating or something buzz -, but it’s the most recent interesting thing I listened to. I love it when trying to sleep or rest.

Watching: polymer clay tutorials on YouTube.

Reading: a Dutch collection of columns by a businesswoman turned special ed teacher. I just finished a book of stories by a Dutch ER doctor. I’m wanting to read more English-language collections of real-life stories too, but not sure where to start.

Around the house: did I even ever share here that my apartment at my current care home has a separate living room and bedroom? I also have a pretty large bathroom and a walk-in storage closet, as well as an enormous terrace. Now that it looks like I’m not going to look for another care home after all (at least not within the near future), I may want to look towards actually making my apartment into a home-like place. I really hope to learn to take better care of it in the new year, which includes keeping it relatively clean and organized but also nicely decorated.

To-do list: I don’t really do those and didn’t make any plans for the next day or even next hour until very recently due to the nature of my support here. Now, thanks to my improved care, I can start actually having a bit of a to-do list. On it currently is finishing the polymer clay unicorn I started crafting with my assigned staff on Friday.

What I’m creating: just cured some polymer clay bear-shaped pieces that I’ll turn into earrings later, as well as a number of beads (well, I’ll still need to drill the holes). This evening, I crafted a turtle out of polymer clay, which is still waiting to go in the oven until I can cure it together with the aforementioned unicorn.

I still have a lot of finished polymer clay creations I didn’t show you all too. My most recent one is the below snowman.

Bible Verse/Devotional/Prayer/Quote: I am struggling with my faith quite a bit lately, so here’s a space for me to pray. God, help me see Your presence. I’m struggling to feel Your nearness lately. Please help me realize that You are there for me even as I go through these hard times, or especially then, or… well, oh wait, that You are always there. In Jesus’ name, Amen.

Re(dis)covering My Creative Self

Posted on by Astrid

Today I crafted a dachshund out of polymer clay. I haven’t put it into the oven yet, as I still want to create other things before baking them all together. I sometimes feel a rush to create, create, create as who knows when this will end? In two weeks’ time, my support coordinator will be back and may decide to put my old day schedule back in place, in which I had only one tiny moment when I could possibly choose to work with clay, inbetween my morning coffee, a long walk and my lunch.

I am taking baby steps towards becoming my creative self again. This blog post is part of the process, as writing too is part of creativity. I notice my writing suffered significantly due to the chaos that was (and may become again) my support at my current care home. I know I’ll still have lots of time to write if my support coordinator puts my old day schedule back in place, but time isn’t the only factor. Inspiration is, too. And when all I do is try to survive from moment to moment – the staff’s terminology for the times they step in to support me -, I am not able to be creative at all.

I am really trying to look at these few weeks as an opportunity to re(dis)cover myself as a creative person, not just as a disturbed, manipulative yet oh so intelligent person, like most of the staff see me. My hope is that the staff who see me as primarily oh so intelligent yet disturbed and manipulative, will soon realize that, with the right support, not only will those “disturbed” behaviors lessen, but I will be able to show them my artistic side. If not, I am hoping that, soon enough, the staff who do get me will be able to convince my support coordinator and those who agree with her that this is not the right place for me. They have seen a glimpse into what I can be like when I am properly supported and I am cautiously optimistic that they can help me maintain this sense of myself, regardless of what happens when the support coordinator returns from her time off.

Things That Made Me Smile (December 12, 2022) #WeeklySmile

Posted on by Astrid

Hi everyone. I’m joining the Weekly Smile today. Even though I’m trying not to get my hopes up too much about the new day schedule, this also means I enjoy every moment of it.

For those not aware, on Saturday, I started with a new day schedule that is mostly time-organized and allows for me to choose my activities rather than it being activity-based. It is of course still in its test phase and it may actually be torn apart (figureatively speaking) by my support coordinator once she returns from her time off after Christmas. That’s why I’m not getting my hopes up, but also why I enjoy every moment.

The thing that made me smile most about the new day schedule is that it allows for time for me to work with polymer clay with my one-on-one again.

The most smile-worthy event of the weekend is, of course, the creation of my very first unicorn in the new care home! It isn’t my best unicorn ever, but I completely loved crafting it. The staff I created it with, suggested we place it near the Christmas tree, as its mane and tail are in red and green. My fellow clients and staff love it.

In addition to the unicorn, I crafted a koala and an apple out of polymer clay. I also attempted to create a macaron, but decided not to bake that one, as it wasn’t a success.

One of my staff – a staff who can be a bit direct – did ask me how long it took me to craft the unicorn. I struggled not to see this as criticism, as it took me about ninety minutes total, over two sessions, including gathering my supplies and all. He did ask me whether I could craft a panda, as those are his favorite animals. I told him I’d make one for him and did so this evening. This was harder than I thought it’d be, mostly because the black Fimo I used for the panda’s black body parts kept leaving streaks on the white Premo I used for its white body parts. My staff tried to remove them with alcohol, but it remains to be seen how successful this was. Regardless, I enjoyed the process.

What made you smile recently?

#WeekendCoffeeShare (December 10, 2022)

Posted on by Astrid

Hi everyone. How are you doing? I had my last cup of coffee for the day, but still I want to join in with #WeekendCoffeeShare. I guess you could get a Senseo if you want one, or a cup of tea, or soda. Or you could go for water like I will now. Let’s have a drink and let’s chat.

If we were having coffee, I’d ask you how your weather’s been. It’s been a month since I did a coffee share post and winter has well and truly arrived by now. Daytime temperatures hardly get above 0°C, although we don’t get very low night-time temperatures. Thankfully, despite the cold, I’ve been able to go on walks everyday, as it’s not been raining that much.

If we were having coffee, I would share that I finally reached breaking point here at the new care home last week and my mother-in-law called the home to get to speak to a higher-up, either the behavior specialist or the manager. She was told that I’d had a good day that day. While that was mostly true, it wasn’t about that day. My mother-in-law then contacted the mediator I had been in touch with too. She is independent and helps advocate for clients or family members but is paid for by the care agency.

After a week of playing phone tag, the mediator finally got in touch with the manager and was able to convince her to schedule a meeting between me, the mediator herself, a staff and the behavior specialist. This will most likely take place before Christmas, so the staff who will be attending won’t be my support coordinator, as she’s off on vacation till after then. I did ask that my mother-in-law be invited too, which the mediator initially didn’t feel would be appropriate. Her reasoning was that it’d be too many people attending and that she (mediator) would be there to support me already. However, the mediator is not able to realize how much I’m not able to process during a verbal conversation, so I stood my ground.

If we were having coffee, I would share that, earlier this week, one of the staff and I were able to create a new, more suitable to me day schedule. It was (unofficially) started today (while we’re waiting for the staff to type it out). The new schedule is organized around timeframes, like my day schedule at the old care home, but of course with the note that these are rough directions. I am quite satisfied with my first day using the new day schedule, but of course I do realize that it may only be 2 1/2 weeks before it will be trashed by my support coordinator.

If we were having coffee, I would tell you that I am loving spending time on my polymer clay again. I am not getting my hopes up yet, but, in my new day schedule, I have lots of opportunities for claying. I made use of them today and created my first actual unicorn! Granted, it doesn’t have a mane or tail yet, because with the particular tutorial I used, you had to bake the unicorn and then attach those parts and bake again. I am hoping to do that tomorrow. I however am completely excited about crafting again. Now all please pray my new day schedule works out and my support coordinator won’t trash it when she comes back.

If we were having coffee, lastly I’d tell you all that I got some lovely presents in the mail from my parents on Thursday. I got a lavender-filled unicorn soft toy that can be heated in the microwave. I also got three different kinds of candy: chocolate, licorice and so-called Dutch traditional candy, which was hard candy. I loved all of them. The online shop also sent a few random samples of a sugar soap, so-called immune boosting capsules and some kind of fruit and veggie powder that you need to put into water and drink. I threw these away. So far, I haven’t actually microwaved the unicorn, but I did hold it when trying to sleep.