2023: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year. I am dealing with a nasty cold and very much overloaded by the early fireworks. I really expected the institution town to be quiet, but it isn’t. Regardless, my sense of duty is stronger than my wish to crawl into bed with a PRN tranquilizer and that sense of duty tells me I need to review the past year. So here goes.

I started out 2023 cautiously optimistic. I mean, I admitted in my hopes for 2023 that my day schedule, though better than the one my then support coordinator had given me, was far from ideal. In the months that followed, it would turn out that “far from ideal” was really a euphemism and that the intensive support home wasn’t suitable for me. I know my staff there blame my critical attitude, but honestly my current day schedule is pretty much ideal and, moreover, at least my staff try to think in terms of validating my needs rather than fueling competition for care.

By late January, I had pretty much decided I didn’t feel I could live in the intensive support home long-term, but it took till mid-March for a meeting to formally make the decision to start moving plans again. Then I waited two months before hearing any steps had been taken, then another two before that awesome E-mail from my now assigned staff to my mother-in-law asking what color of paint I wanted on my wall.

In the meantime, I didn’t sit still, though sometimes it felt like it. I indeed wasn’t as active as I was during 2022. I participated in the April #AtoZChallenge on my blog, which was really my only active month this year.

I also helped set up swimming for the intensive support home. After all, the idea to ask the institution pool whether they had a time slot for me and a staff to try out swimming, came from me, and then it turned out this time slot wasn’t available just once, but each week.

For the most part though, over the spring and summer, I struggled. It didn’t help that my support staff came up with the conclusion that I got more one-on-one support than I was getting funding for. This led to regular arguments with my former staff about how to cut those hours once I moved.

When I actually moved and my hours had to be cut, the staff soon enough figured out that this wasn’t a viable situation. Thankfully, I got my hours back, first through my care agency and then through funding from the Care Office.

Once this had been sorted, my life significantly improved. For one thing, I was spending more time creating things out of polymer clay. I also explored other activities, such as baking.

In the health department, 2023 was a mixed bag. I did reach my goal of getting to a healthy BMI, but over the past couple of months I have been struggling to get in the movement needed to meet my activity goals. That is, I haven’t met my movement goals several times this past month. One reason is the weather and the fact that, now that I’m at my current care home, I cannot (yet) go swimming regularly. Another factor though may be the fact that I’ve lost weight and haven’t adjusted my movement goal accordingly. Still another factor may be laziness though.

Lastly, 2023 was the year I left Christianity for good. I mean, I’m still spiritual, but I don’t care for a God that condemns the vast majority of people to eternal suffering, many of whom simply for being themselves.

#WeekendCoffeeShare (December 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining in with the #WeekendCoffeeShare once again. As usual, I’ve had my last cup of coffee for the day. We didn’t have chips to go with my soft drink, as for some reason the person ordering our care home groceries had ordered far too little. We are also almost out of desserts and the next delivery of groceries won’t be till this coming Wednesday. It’s going to be a not so luxurious Christmas after all. Speak of first world problems. Let’s have a drink (thankfully I have lots of green tea, including coconut-flavored green tea) and a biscuit (I have cinnamon stars and stroopwafels in my cupboard) and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s usually uneventful here in the eastern Netherlands, but not so this week. Storm Pia actually hit us hard. In fact, on Thursday, the storm caused a tree to fall over on top of a side-by-side bike here on the cycling path that’s along institution grounds. The staff member steering the bike was hit so hard that she didn’t survive. The client had relatively minor injuries, but I’m pretty sure they’re traumatized for life. I don’t know the staff member myself, thankfully, but it was a warning sign not to go outside in the storm.

We’ve been experiencing heavy rain and wind all week except for Monday. Monday was actually a beautiful day. I went for a 5K walk with a staff member that day.

If we were having coffee, next I’d tell you about the stroopwafel cheesecake I made yesterday. I made it because my one-on-one got renewed, something I really hadn’t expected. The cake was extremely sweet and a calorie bomb as they say here but who cares? It was also delicious, after all.

If we were having coffee, I’d share that I’ve really been feeling creatively motivated lately but have been struggling to put this motivation into action. As a result, I haven’t been doing much with my polymer clay lately. I’d really like to change that soon. I did order new clay, because I want to experiment with Cernit and also because some of my Fimo is too crumbly to condition without exerting enormous effort.

If we were having coffee, I’d share that I did come up with the idea of using my two-hour activity time slot for cooking a simple meal for myself and my fellow clients. We could then reheat it in the oven or microwave when it’s dinnertime.

If we were having coffee, I’d tell you my assigned staff asked me to think of goals for my upcoming care plan. He did say that these goals do not need to be all that drastic or anything and that simply having a meaningful life could be a goal in itself. I mean, my staff at the intensive support home have been pushing me to create independence-focused goals but I really don’t care for those given the discrepancy between the fact that technically my body still functions okay but due to overload tasks still cost me tons of energy. I mean what if staff and I set a goal for me to achieve a certain task and I physically achieve it in three months’ time, then staff will always expect me to do it independently because purely physically speaking I can. Then because it costs me tons of energy I’ll end up neglecting it if I don’t have supervision (ie. someone pushing me to do it) and we end up back at square one. And to be honest, I don’t want to have someone supervise my every task that I can do myself just so they can tell me to do it myself and push me far beyond my capacity limits in terms of energy.

If we were having coffee, lastly I’d tell you all that I’m looking to finally turn my room into an actual living space. I’m looking to buy some more furniture and also to possibly decorate it more. Currently, there’s a box full of junk in my room that I could really empty out. I mean, after I’ve finished my crisis signaling plan, because the folder from Raalte is in there. In its place, I’d like to put a second nightstand or small cabinet, so that I can put my claying supplies in there rather than in a box under my bed. I am also looking to put some poster on my wall, probably something not too weird. I mean, I originally wanted to go for a unicorn theme but that’d be all very flashy, which isn’t exactly my style.

Speaking of unicorns, I will be wearing a unicorn-themed Christmas hoodie this year, like last year. It’s a little on the big side now, but not too much so.

Hope you all have a lovely Christmas.

The Wednesday HodgePodge (December 20, 2023)

Posted on by Astrid

Hi everyone. Another Wednesday, yay! I’m joining in with the Wednesday HodgePodge. Here goes.

1. Did you do more talking or more listening yesterday? Was it by choice or by necessity?
Talking. Honestly, even though I’m an introvert, I talk more than I listen generally. Maybe that technically makes me an ambivert, who knows?

2. Are you a tea drinker? Hot, cold, or both? Flavored? What do you like in your tea? Do you make Christmas tea this time of year? What time of day do you like to sip your tea?
I’m more of a coffee lover but I do drink tea occasionally. Usually hot. I mostly drink plain green tea, although I like some flavored green teas too, like coconut or cranberry. Nothing in my tea please. I’ve never made Christmas teas and have no idea what makes a tea specifically a Christmas tea. I usually drink my tea in the afternoon or evening.

3. What’s an activity you won’t try, an event you won’t attend, or an athletic challenge you won’t take part in not even for “all the tea in China”?
Marathon running. That is, most likely I will never run more than 100m at all and that can barely be considered running.

4. What’s something most people seem to love but is not “your cup of tea”?
Starbucks. And yes, I thought of that before I’d read Joyce’s answer. Like I said before, I went there twice and thought I sort of liked it the first time (because everyone apparently does). The second time though, both I and my spouse decided we definitely weren’t coming back.

Oh and romance novels. I am not sure whether I haven’t found the right kind yet but I think they’re all horribly cheesy, shallow and predictable, and it’s not like I need lots of twists in a book otherwise.

5. How does your family celebrate New Year’s Eve?
Uhm, we don’t? That is, as far as I know my spouse isn’t expecting me to come to our house for the occasion. Last year, though I did spend New Year’s Eve in Lobith, we went to bed before midnight.

6. Insert your own random thought here.
I want to share some good news: my one-on-one got renewed! I don’t know any details yet, but according to my staff everything will stay the same with respect to my care.

Never a Perfect Day: Is It a Bad Attitude?

Posted on by Astrid

Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.

There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.

Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.

It’s Not About Them #SoCS

Posted on by Astrid

Lately, I’ve fallen back into the habit of comparing the care I get or don’t get to that which another client gets. I did it with the full-time one-on-one client at my previous home too and it got so far that I ended up calling her derogatory names for getting what I felt I needed. Which, for clarity’s sake, wasn’t full-time one-on-one, but to have staff not leave me during my assigned one-on-one hours for every little thing. And more importantly, I felt it was unfair that she was assigned familiar staff 100% of the time while I got stuck with the temp workers most of the time.

This same issue is what’s at stake again now, since there’s another one-on-one (not sure it’s full-time) client here who doesn’t need to deal with temp workers. I didn’t mind this at all until one day earlier this week, the staff schedule got turned upside down to accommodate him and as a result I got stuck with a temp worker who was here for the first time.

This illustrates my point: I don’t care what others get. It’s not about them, it’s about me.

To solve my unfairly comparing myself to others and falling into an endless trap of what others have or do to “deserve” the care I feel I need, I am going to ask my assigned staff to write up a note saying that staff not engage in arguments about other clients’ care. For clarity’s sake, this is not the same as saying “No arguing, I’m leaving”, like the staff were originally told to do at the slightest opposition from me regardless of topic. Rather, I’d like the staff to listen to me and validate my feelings regarding my unmet needs. After all, to me, it doesn’t matter what someone else gets or doesn’t get, but when my care is compromised, I feel bad.

This post was written for today’s Stream of Consciousness Saturday, for which the prompt is “to me”. I realize I didn’t make the phrase central to my piece, but this was what popped into my mind.

November 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of November, so I am joining #WBOYC and reflecting on the past month. Can you believe we’re almost in 2024? Ten more years and everything will be okay, as I always say (or WWIII will be started, as the book I used for inspiration for that claim says). Anyway, let’s wrap up November.

It started with the meeting on how I’ve been adjusting to my current care home on November 6. This meeting went okay. At first, I was a bit disappointed in my assigned staff’s attitude. I honestly still am to an extent. However, I’m trying to believe the staff are doing their best to help me.

The new application for one-on-one support was sent out the following week. I only heard some superficial bits and pieces of what went onto it, so I’m still very much stressed out about the possible outcome. It doesn’t help that my now old day schedule was used as a reference to base my necessary hours upon, which I’m pretty sure the Care Office are going to be very critical of, as was I.

Thankfully, at least for another 31 days, I’ll now have my revised day schedule. It started on Monday and I’m thrilled about it. Please, all pray or send out positive vibes or whatever you do for the necessary one-on-one to be approved for next year too.

I also worked on my crisis signaling plan with my assigned staff. This led to a major surprise, and not a good one: it turned out my original support coordinator from the intensive support home had significantly changed my plan without my knowledge or consent. I knew right as my assigned staff read me what staff are supposed to do when I’m asleep (the first phase talked about in the plan) during the day, ie. let me sleep and wait for me to leave my room rather than check on me periodically. Since my former support coordinator hadn’t altered the date and names of the people writing the plan, it still looked as though my staff from the care home in Raalte had written it though. I however was adamant that this was not the plan I’d agreed upon.

My assigned staff initially tried to dissuade me from focusing on this and seemed to disbelieve me, until I went and fetched the manila folder I had with my old day schedule and, yep, my old plan from Raalte. He tried to tell me they looked similar, but this was only when referring to the signs of the different phases, not the staff’s expected actions.

Unfortunately, my old support coordinator no longer works for this care agency, or I’d have filed a complaint against her. Oh well, my current assigned staff erased the evidence by editing the name and date to his and November 2023 and saving the document, after we’d indeed worked some on it. I am honestly extremely mistrusting of everyone here now that I know of this. I mean, all staff say that this home isn’t the intensive support home, but how do I know it’s different?

In the creative department, I haven’t really been as active as I’d have liked, but I did okay. I crafted a gnome out of polymer clay and most recently a Santa, both without the use of a tutorial. I also wrote some creative pieces, which I intend to do more of in December and in the new year.

Health-wise, I wasn’t as good to myself as I could’ve been. I really snacked far too much. The thing is, I still didn’t gain any weight, and am currently at the lowest point I agreed upon with my dietitian, weighing 56kg. It wasn’t that I over-exercised either, as I didn’t meet my movement goal on my Apple Watch several times this past month (and my movement goal is only 300 active calories, so you know).

I finally did get my support coordinator’s attention re the possibility that I might be experiencing cognitive decline. She’s going to ask the behavior specialist for some screening instruments for self-help skills or whatever. Sadly, these haven’t been administered to me before, so this is going to be my baseline really.

I Want to Create #SoCS

Posted on by Astrid

I haven’t been very inspired to create lately. Last Monday, this topic was on my mind when discussing how I’m doing at my current care home. I sometimes try to blame lack of time or familiar staff to help me create as reasons for why I hardly work with polymer clay anymore. This is indeed a factor, but it’s not everything. I’m probably also experiencing a bit of a decline in my creativity and general cognitive state. Then again, if I don’t nurture this creative side of mine, I will only deteriorate further. And, although if I had all the mental and physical energy in the world, I’d really like to be able to be more independent in other areas, creativity is what I really want to work on.

Thankfully, my crafty spirit isn’t completely gone. In fact, I believe that I still can ignite this spark of creativity that is the recognition that I want to create, so that it will become a massive flame of artistic expression.

It wasn’t even for this reason that I decided to create a gnome out of polymer clay yesterday. It’s my spouse’s birthday tomorrow and I’d be visiting my in-laws in celebration of it today. My spouse has a birthday wishlist and had already guessed correctly the gift I’d selected off of it, so I wanted a handmade gift in addition. My spouse has a large collection of gnomes, so it’d be only logical that I’d create one out of polymer clay.

Polymer clay gnome

I actually was more creative than I normally am, as usually I follow a YouTube tutorial except with my unicorns. This time though, I created the gnome completely by imagining it. The only thing I don’t like about it, is the fact that I forgot to paint a white dot in its eyes to make them look a little more alive.

This post was written for Stream of Consciousness Saturday, for which the prompt this week is “create”.

In an Ideal World

Posted on by Astrid

In an ideal world…
I’d get all the care I needed,
From all staff I trusted.

I’d be able to engage
In activities I enjoy-
Crafting, baking, walking, swimming.
Without a care in the world.

I’d live closer to my spouse
If not together.

Sigh…
In an ideal world…

This post was written for Sammi’s Weekend Writing Prompt, which this week is “ideal”. I realize that my dreams for an ideal world are a bit childish and rather self-centered. The piece was based on the thing I at one point told staff at my old home: that, in an ideal world, I’d get one-on-one all day long. This isn’t actually true, since I need alone time to read and blog and phone my spouse, for instance. However, I do feel there are ways in which my care could be improved. Some of them might be realistic, while others fall into the category of “in an ideal world”.

September 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. September was a true rollercoaster of a month. Let me share. I am joining in with What’s Been On Your Calendar? (#WBOYC).

The month started with me being notified by my support coordinator for my now old home that I’d be moving to my current care home on the 18th of the month. The boxes arrived the next Friday and I started packing. I had a visit at my new care home on the 15th, which my mother-in-law also attended. The new staff seemed nice, but I did feel overloaded having coffee in the living room.

My move went about as chaotically as could be. For one thing, institution transport weren’t available that day, so my old support coordinator had to move most of my stuff, the rest to be moved the next day. For another, the staff here at my new home weren’t prepared with an extra staff member when I moved, so my old home’s staff had to help me get settled.

Handover also went rather frustratingly, so I was happy when my old home staff pulled away after a day. Only then began the trouble with my day schedule. I had been informed by my old home’s behavior specialist that the intention was to keep my day schedule mostly the same as at my old care home while I adjusted. This wasn’t to be. In the first week, at least three adjustments were made to my day schedule, all cutting my hours, and several more changes were not put on paper but were implemented in practice. The most frustrating changes took place in the early afternoon, including a 60-minute group activity time slot. I tried to make it work, but was often too easily overloaded, leading to extreme irritability throughout the day.

Thankfully, yesterday my assigned staff, after talking to the manager, informed me that I would be allowed a one-on-one activity time slot during the early afternoon for now anyway, during which I can do something creative. We’ll have to see how this all works out once my one-on-one has to be renewed in November.

Today, in an attempt to celebrate my time to spend doing crafty activities, I created my first polymer clay unicorn while at this home. I would’ve been able to finish it within said activity time slot had we not also been looking at recipes for baking and put my laundry in the washing machine. Thankfully, my one-on-one staff for this activity time slot was able to come back at a later time and finish the unicorn with me.

Overall, like I said, this month was a true rollercoaster with lots of ups and a few deep downs. Things are looking up now though.

#WeekendCoffeeShare (September 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare. I’ve long had my last cup of coffee for the day, as it’s 9PM. In fact, most people here at my new care home are in bed already. I guess I’ll have just water to offer you now, sorry. Let’s catch up anyway.

If we were having coffee, I’d start out by moaning about the weather. Fall has well and truly set in here. The temperature hardly got above 20°C at all this week and most days it didn’t get above like 17°C. Moreover, unlike the heating in my old care home apartment, which was set to an uncomfortably warm setting all year round, this room’s heating seems to be stuck on the cold side.

If we were having coffee, then I’d post another petting zoo picture. This one is of the birds once again. Did I mention that my new care home is like a two-minute walk from the petting zoo?

If we were having coffee, then I’d share that I’m adjusting better to living in this care home than I was to living in my previous one. Like I mentioned on Thursday, I started working with polymer clay, in fact. I haven’t put anything into the oven yet, as I first need to test the oven temperature before subjecting my precious projects to it. However, I’m happy to report I already finished two simple pieces: the planet charm I mentioned on Thursday and a flower.

In addition to working with polymer clay, I have created a shower gel (from just a base and essential oils) and made a bracelet. I did play card and dice games too. I didn’t walk as much as I used to at my old care home, but that’s okay.

I am still struggling with mornings and early afternoons, but I’m giving it a chance to work out. For example, yesterday I came up with the idea of watching children’s stories on YouTube when I have my group activity time. I normally watch those in English, which of course the other clients can’t make sense of, but I could definitely find Dutch children’s stories on YouTube too.

If we were having coffee, lastly I’d share that I bought another collection of journaling prompts that I’d really been looking forward to on Tuesday, only to find out that the actual prompts are probably handwritten or something inside the Kindle book and I can’t access them using my screen reader. This is a relatively common occurrence with Kindle books and I honestly feel that Amazon shouldn’t claim screen readers are supported in that case. Oh well, I have tons of other prompts to choose from.