Share Our Life (March 2025): An Average Day

Posted on by Astrid

Hi everyone! Today I’m joining Share Our Life, a linky with a monthly theme. This month, it’s to describe an average day in your life. Unfortunately, taking pictures is not part of my average day. I really want to change that, but for now, just text will have to do. I didn’t pick a specific day to describe.

I usually wake up at around 7:30AM when the staff are helping the resident in the room next to me with her morning routine. Since my first support moment isn’t until 8:15AM, I usually have a little snooze.

8:15AM is when my staff come to wake me up and help me with my morning routine. I hate showering, so don’t do it each day. I get dressed and have breakfast – usually quark with muesli and blueberries. My morning routine, including breakfast, can take up to an hour.

At 9:15AM, I’ll usually lie back in bed for a little slumber while listening to music on my music pillow.

My first activity time slot starts at 10AM. I sometimes extend my lie-in until 10:15 or 10:30AM. I start my activity time slot with coffee and then I’ll usually either play a card or dice game or go for a walk.

By 11:30AM, my staff leave to prepare my lunch. I usually eat two slices of bread with peanut butter and a cracker with speculoos (Biscoff). I also consume a serving of veg with my lunch. My lunchtime is at noon.

By 12:15PM, I’m done eating and will be on my phone for a bit, reading the news or texting or calling my spouse, who is then usually taking a break.

My two-hour activity time slot starts at 12:45PM. This time slot was originally intended for more time-consuming activities such as a bigger polymer clay project, going out to the nearby town, etc. Occasionally, I’ll use this time slot for cooking dinner for myself and my fellow residents. Often though, I can be found walking grounds with my staff. I’ll end my activity time slot with coffee, although I might also have a cuppa by 1:45PM already.

My staff go into handover at 2:45PM and I’ll most days use up the 45 minutes until my next supported moment with some online activities. By the way, handover doesn’t take 45 minutes, but it’s not like I need one-on-one all of the time.

During my 3:30PM activity time slot, which lasts an hour, I commonly play a dice game. I sometimes also go for another walk. I have unsupported time again for 30 minutes after this while my staff help the other clients with their dinner. My dinner is at 5PM. I am a rather fast eater, so am frequently finished by 5:15PM. My staff have their break at 5:30PM.

At 6PM, my final activity moment for the day starts. I have an activity list, from which I can choose what we’re going to do. What we’ll do, is too often related to the staff supporting me. I really want to change this, but it’s hard.

I’ll have my final coffee at 7PM and then have unsupported time again until it’s time for my late evening meds at 8PM. I’ll most commonly use this time and the rest of the evening for blog-related activities.

Like I’ve shared many times, I usually have Dubbelfrisss in apple-peach flavor with my evening meds. I also will eat a serving of fruit. Then I’ll be told which staff will be in the home the next day. Some days, I’ll hang out in the living room for some time then, while at other times, like today, I’ll head straight back to my room and go online. I used to be phoning my spouse a lot late in the evening too, but now we’ll often talk at other times.

At 8:45PM, I’ll sometimes have a little snack. Then I’ll go online again until my staff come to supervise me brushing my teeth and to close my door to the yard at 9:30PM. After that, the staff will leave the home and I’m supposed to rely on the night staff in the main institution building for support. My fellow residents all go to bed before then, but I’m allowed to stay up. I’m a true night owl, so most days it’ll have been past 11PM before I’m in bed.

All this sounds incredibly boring and unproductive. I really want to put my unsupported time to better use, because currently most of the time I just end up scrolling.

#WeekendCoffeeShare (March 8, 2025)

Posted on by Astrid

Hi everyone on this International Women’s Day! I’m joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. If you’d like a drink though, feel free to grab one and let’s chat.

If we were having coffee, first I’d talk about the weather. For most of the week, it’s been absolutely gorgeous! Today, we even reached 20°C. I know that this isn’t good news, in the sense that it’s way too warm for early March. I do care, but I also realize that I alone (or even all of the Netherlands alone) can’t stop or slow down climate change. For this reason, I’m enjoying the good weather while I can.

If we were having coffee, then I’d brag about all the physical activity I got in. Yesterday, I set a new record on my exercise minutes by exercising (mostly walking) for over three hours. I burned 600 active calories according to my Apple Watch.

Today, I didn’t walk as much, but still went for a few nice walks and I did ride the side-by-side bike. It’s an eBike and my staff had forgotten to check its battery level, so it quit working midway through our ride.

If we were having coffee, then I’d tell you that, on Thursday, my staff and I took a walk around the nearby lake. We also walked this route one day in late January and I remembered a little café along the way had the most delicious caramel pie. My partner looked at the menu on Wednesday and said the caramel pie wasn’t on it. Maybe it was the “pie of the week”. Thankfully, once at the café, my staff asked the waitress whether they still had the caramel pie and they did!

If we were having coffee, I’d tell you I am planning to create a trinket dish out of polymer clay soon. I ordered a cutter for it, which arrived on Monday. Unfortunately, my ceramic tile that I work on, is too small to cut out the shape on. However, one of my staff said she still had ceramic tiles somewhere and, thankfully, these were big enough. Haven’t gotten down to actually creating the trinket dish yet, because the weather’s just too beautiful.

If we were having coffee, I’d also share that, on Tuesday, a staff and I went for a walk around grounds again with the purpose of taking pictures of nature. There were mostly snowdrops and crocuses to be seen.



A few days later though, they’d mostly gone and the first daffodils could be spotted. No pics of those, as it was too sunny when I was out today.

If we were having coffee, I would conclude by saying this week overall was good. I had a few moments when I was in distress over the fact that there were quite a few temp workers, but the staff made sure always to assign me a regular staff. I realize it can’t always be this way and I’m okay with that, but I did tell my staff that my accepting a temp worker once out of necessity doesn’t make them a regular.

#WeekendCoffeeShare (March 1, 2025)

Posted on by Astrid

Hi everyone on this first day of March. I’m joining #WeekendCoffeeShare again. I’ve just had my last cup of coffee for the day, but if you’re quick, you may be able to enjoy a soft drink. We usually get chips with our soft drinks on weekends, but if I’m correct, the staff ordered meatballs. Let’s have a drink (and a snack) and let’s catch up.

If we were having coffee, first I’d talk about the weather. Most days, it was chilly but not rainy. We got the most rain on Thursday, but even then I managed to go out.

If we were having coffee, then I’d tell you that I did achieve the perfect month on my Apple Watch in February. My March challenge is incredibly easy: get in at least 3.63km of walking/running on at least fourteen days this month. I always thought the challenges were based on the previous month’s achievements, but I’m pretty sure I got a lot more steps in during February.

If we were having coffee, I’d report that I’ve been struggling again. This led to a number of arguments between me and the staff. Particularly, it frustrates me to no end that some staff are much more likely to react angrily to my irritability than others. As a result, I don’t accept gestures indicating they support me from these staff. Like, if you’ve first been telling me off, I won’t accept it when you offer me comfort. Unfortunately, my assigned staff claims this differing treatment is just how it is and she says it’s because I don’t accept the same treatment from everyone. This came across as if she was holding me responsible for the different approaches.

If we were having coffee, I’d also share that I’ve been frustrated with my day schedule and particularly the lack of clarity in it. I particularly don’t like the fact that, each time, I’ll have to choose an activity out of fifteen or so options. Thankfully, I was able to turn my frustration around today and decide that, on Monday, I’m going to the next town to buy groceries and, on Tuesday, I’m going to cook dinner for the home.

If we were having coffee, I’d share that part of my struggle is the extreme discrepancy between my intelligence and my emotional functioning. I’m said to function emotionally at a level comparable to a child under 18 months of age in most respects, but my IQ is above-average. Moreover, I happen to have an interest in psychology and social work. As a result, I, for example, know more about the theory of care and support than most of my staff, but I can’t apply it to my own situation and not just because I’m the client.

Like, when I’m in a good place mentally, I sometimes find myself pointing out ways staff are asking too much of me emotionally, but precisely because I can say so, I’m judged not to need the support I need.

If we were having coffee, I would however also share that I still experience moments of joy. For example, on Monday, a new student staff was being introduced to my activities and we created a unicorn (of course) out of polymer clay. This time, because the unicorn was rather fat and the staff had placed the front legs far apart, I chose to add a heart to its belly. I also decorated its back with rhinestones. Two pictures below, because my staff couldn’t capture both the heart and the rhinestones in one.


If we were having coffee, lastly I’d tell you that I struggle with self-criticism and this also leads me towards less creativity. I, however, overcame the feeling that I “should be better” sometime on Tuesday when I created a rather simple bracelet. It was just beads stringed onto elastic wire. However, looking at my comment about emotional development, I sincerely believe I did a pretty awesome job, since a toddler can’t do this at all.

Sorry for the rambly post. I’m still feeling hazy after another meltdown. By the way, no meatballs for our evening treat, as somehow they’d disappeared.

#WeekendCoffeeShare (February 22, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare once again. It’s almost 10:30PM here, so no coffee for me. Since this is a virtual get-together, you’re free to grab your own beverage of choice. Let’s have a drink and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been all over the place with freezing night-time temps and daytime highs hardly above freezing early in the week, then a daytime high of 16°C yesterday. Today the daytime high was 12°C, which is still quite warm for late February. Unfortunately, it was raining most of the day today.

If we were having coffee, then I’d share that this week was a mixed bag mental health-wise. I’ve mostly been quite tired, but the bloodwork I had done on Monday came back all clear. I wish there was something simple that could explain my daytime tiredness, but I’m pretty sure that if I pressure the doctor to do more testing, they’ll just say I shouldn’t give in to fatigue, as I was told the last few times (many years ago) that I complained of being too tired.

Yesterday was a good day, but today I felt a bit irritable and overloaded.

If we were having coffee, then I’d share that I spent a lot of time early in the week switching web browsers. Somehow, with the latest update, Edge for iOS is pretty much impossible to use for me. Whether this is an actual bug in its accessibility with VoiceOver or it’s just that things have been switched around like crazy and I’m not tech savvy enough for it anymore, I don’t know. I tried getting the freakin’ Copilot (Microsoft’s AI) that was constantly in my way to disappear, but it wouldn’t.

So I decided to leave Edge behind altogether and switch browsers, because I don’t like using one browser on my iPhone and another on PC. I finally settled on Chrome and, though I’m still figuring things out, mostly it works okay.

If we were having coffee, I’d then tell you that a (now former) staff came to say goodbye on Monday. I gave her the “bull in a china shop”, ie. the polymer clay elephant in a mug I’d created last week. She loves unicorns and elephants, but she already had a unicorn.

This time around, I didn’t get a proper description from the Be My Eyes app, because it judged the mug to be its body and the letter J (for the staff’s first name) to be its tail.

If we were having coffee, I’d then tell you all I had a good day yesterday. I walked a lot, but also visited the next town’s market. I had originally been uncertain as to whether I wanted fried fish (or shrimp really) because of it being quite a high-calorie, high-fat food. I eventually said “screw it!” and considered yesterday a total cheat day. I, after all, also had fried chicken for dinner. Granted, other than that I only had a salad.

If we were having coffee, then I’d share I do really need to lose weight though. I’m about 2kg overweight, which doesn’t seem like a lot given that I used to be 20kg heavier than I am now. However, the “screw it!” thoughts are pretty commonplace especially given the current state of the world. For example, my unhealthy voice is telling me it’s not a problem if I risk getting a heart attack ten years from now because, for all we know, the world may’ve gone up in smoke by then anyway. I, thankfully, do still have more tangible reasons to lose weight or at least not gain any. Like, I still want to be able to wear my favorite pants.

If we were having coffee, lastly I’d share that I am still going strong meeting my movement goal on my Apple Watch each day this month. I’m really hoping for the perfect month award. That being said, I’m not overcompensating for my having indulged in too many “cheat” foods. Not that I believe in cheat foods anyway, since there are no bad foods, just less healthy habits. And overexercising can be a less healthy habit too, as my dietitian reminded me on Wednesday. Not that I’ve ever truly done that, honestly. The bottom line though is that I’m not engaging in compulsive eating habits or exercise. I feel things might need to be a little more controlled, but I’m not sure how to do this.

A Recent Frustration Related to My Care

Posted on by Astrid

Hi everyone. I haven’t blogged in over a week because I’ve been struggling once again. Honestly, I can see why judging from my experience over the past 2 1/2 years, people would say I’m always struggling anyway. The thing is, there are and there definitely were times I am or was struggling less. Besides, to say that this is just the way I am, is blaming me for the system not meeting my needs. And we all know that the system is broken and this is a reality, but I’m honestly getting frustrated with how little recognition I get for my attempts at coping with this reality and how much blame I get when I fail at doing so.

Now on to why I’m struggling again. I mentioned about a month ago that I would no longer be assigned unfamiliar temp workers. This is a definite positive. However, with this home having twenty residents, many of whom with high support needs, the pool of so-called familiar staff consists of at least thirty people. That isn’t the problem: I am fine with all thirty coming into my room to do activities with me, just like I’ve always been fine with the occasional unfamiliar temp worker. The problem is that all thirty so-called familiar staff are supposed to be assigned to me equally often and I’m not allowed to have a preference. The reason is the idea that I’ll add more people to my trusted circle if they’re required to be assigned to me more often.

I can see their point, in particular because four out of eight staff who I consider part of my trusted circle now, are either on sick leave or leaving soon, be it temporarily (on maternity leave) or permanently. I can see why one would like to avoid a situation like with my assigned staff in Raalte, who left about two months before I did and who at the time was one out of only three staff I fully trusted. Then again, I’m never going to have a circle of thirty, just like most people don’t have thirty close friends. And that’s what this whole “get to know everybody” thing feels like. I do try to expand my circle as needed, but I just can’t treat all staff the exact same unless they treat me the exact same and, in that case, we’d all be losing sight of each other’s individuality.

Besides, the staff don’t follow their own rules when it suits them. For example, it’s a rule that I’ll see one staff for my morning activity and lunchtime, but they’ve been switching that around when they felt like it, yet telling me (and each other) of the rule that they must switch at other times. In other words, the staff require me to deal with a minimum of six switches of staff per day, but when it suits them, this can be increased and yet it can’t be decreased. That’s while I made it clear in the document detailing my care needs last summer that I don’t do well with staff switches. Yet they blame me for the agreements we made back then not working, even though they didn’t follow through on most of them. Most notably, they’d told me they’d try to have a trusted staff assigned to me most days for at least part of the day and that just wasn’t happening. In fact, eight out of ten times at least, the staff assigned to do nearly four hours of support with me, was a random, unfamiliar temp worker. I don’t blame myself for this not working out.

I’m sharing this post with the Writer’s Workshop for this week. It was a recent frustration, in that this rule (about required switching) hadn’t been adhered to as strictly as it’s now until last week. I’ve also had a lot of discussions about it with my support coordinator this past week. I’m having a care plan review next week and am planning to raise this issue both specifically and as an example of a general trend towards blaming me for a broken system and mistrust towards me. After all, staff are claiming I would only want my “favorites” assigned to me if they didn’t require staff switches as often as they do now. Let me just say this wasn’t even the case in Raalte, where I did have a core team of at least somewhat trusted staff.

#WeekendCoffeeShare (January 3, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I usually do this on Saturdays, but I want to do it today. It’s 8:30PM, so I’ve had my last cup of coffee and soft drink for the day, but as usual, you can always grab a cup of your favorite beverage. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. New Year’s was windy and rainy. Today, we got a bit of snow. Let’s just say I can’t wait for spring.

If we were having coffee, I’d then tell you that, due to the weather, I didn’t meet my movement goals most of this week. That is, over New Year’s, I didn’t feel safe going outside because of the fireworks. My monthly challenge on my Apple Watch is to burn 335 active calories a day 14 times. This should be easy, but I’m honestly a bit discouraged right now.

If we were having coffee, I’d share that, on Monday, I tried to make a smoothie only to discover that tons of black critters had crawled into my blender. My outdoor cushions had been next to the blender and that’s where they came from. The cushions were horribly moldy too. Needless to say I threw out the cushions. I could’ve washed the blender, but the idea of these critters ever having been in it, creeped me out, so I discarded it too.

Thankfully, when I explained the situation on the phone, my spouse offered me a blender that had been sitting in our house since my spouse’s birthday in 2023, because it was a gift from me. Apparently my spouse hardly ever uses it. It’s a lot smaller than my old blender, so no more smoothies for the entire home. It works okay though, as I made my first smoothie in it yesterday.

If we were having coffee, I’d share that my New Year’s was okay. I had originally planned to stay at the institution, but ended up spending the night with my spouse at our house. For the most part, we just chilled and watched a little TV. We ate a delicious pasta bake for dinner. We hardly made it to midnight before feeling too tired to remain awake. Unfortunately, the fireworks were really bad, so it was 2AM before we properly slept. Neither of us usually sleeps well when we’re together anyway. I left by 2PM on New Year’s day.

That evening, the staff here at the institution had ordered salads, baguettes and various kinds of meat. It was good. I also had a cup of ice cream topped with loads of whipped cream for dessert.

If we were having coffee, lastly I’d share that, like I suspected, I gained weight over the holidays and am now three pounds over my upper goal weight. I’m pretty sure though that, if I gained three pounds in two weeks, I can lose at least part of the weight again before my dietitian’s appt on the 15th. I am actually considering stopping seeing the dietitian, because I know full well what to do to remain somewhat healthy and I don’t think the dietitian helps keep me accountable. I don’t want to ditch my goal (eh, hope) of being more health-conscious, but I honestly don’t see how the dietitian helps me with this. I’ll give it some more thought and may use my weight on the 15th (ie. a factor of how successful I am at actually following through on what I know to be healthy) as a factor in my decision.

Friday Feels (December 6, 2024)

Posted on by Astrid

Hi everyone. I’m joining Debbie for Friday Feels, in which we’re asked three questions about our week and tasked with finding an F word to describe it. My post isn’t nearly as upbeat as Deb’s, but oh well.

F Word

My F word for this week has to be “fatigue”. Like I said last week, I was sick with a nasty cold. Well, I’m pretty sure it was COVID judging from how exhausted I was all week. I’m finally feeling mostly okay today.

What Made Me Happy?

There aren’t many things that made me especially happy this week, but I am glad to report my mental health hasn’t suffered significantly from a week in bed. In fact, I’ve had many crafting and writing ideas float through my mind and, this time, I was actually able to transform some to blog posts. I’m not yet there with respect to the crafting.

That being said, getting my new craft supplies that I’d ordered last week, did make me smile. I had forgotten how many things I’d ordered, but there are literally nine new colors of Premo polymer clay in the package, as well as a few really cool cutters (among which a 5mm heart) and a new silkscreen. I hope I can figure out a way to use the tiny cutter, as I’d love to decorate my next unicorn with a heart.

What Made Me Sad?

Being in bed. That is, I didn’t really have the energy to feel sad, but negative thoughts did creep up on me at times. Like I said above, however, my overall mental health hasn’t gone down significantly.

What Made a Difference?

My feeling optimistic about recovering from this nasty cold/COVID thing. Don’t get me wrong, I by no means believe that a positive attitude cures viral infections, but my not wallowing too much in frustration, helped prevent my mental health from spiraling down.

#WeekendCoffeeShare (November 30, 2024)

Posted on by Astrid

Hi everyone on this last day of November. I’m joining #WeekendCoffeeShare. I just had my last cup of coffee for the day, with a treat of the Dutch typical St. Nicholas candy mix “strooigoed”. I’d have loved to pass you some, but ate the whole bag myself. I’m just comforting myself that the amount wasn’t nearly what I used to consume during a binge. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. A serious storm passed by here on Wednesday. It was the first major storm in nearly a year and a half or so I read on the news. That surprised me, since it wasn’t even a year ago that a staff from one of the intensive support homes died while riding the side-by-side bike with a client. Then again, the most severe winds aren’t in this province and therefore maybe near the coast people are less likely to go out in stormy weather.

Anyway, during the remainder of the week, it hasn’t rained and sometimes even the sun came out for a bit. Daytime temperatures have been around 8°C.

If we were having coffee, I’d say that I’m doing pretty well this week. I consider the fact that this is my fourth blog post of the week, a positive sign of my improved mental health. I really hope it continues.

If we were having coffee, then I’d share that I have a nasty cold. This morning, I spent most of the time in bed because I was feeling so miserable. No fever, thankfully, but in my case even a cold can knock me down for a few days.

If we were having coffee, then I’d tell you that I’ve been quite crafty over the week. On Tuesday, I created a polymer clay pig for a staff who will celebrate 25 years of working for this care agency on Monday. And just so you know, she was the one constantly asking me if I could create a pig; it isn’t like I think a pig is especially suited to her.

Polymer Clay Pig

On Thursday, I crafted yet another polymer clay unicorn, this one for a new staff, who is into unicorns as much as I am. I tried adding flower-shaped wings to it, but this wasn’t a success, since during the curing process, one of the wings fell slightly down the back of the unicorn and got distorted in the process. No photo, sorry, since I threw the thing into the bin.

Then today, I didn’t know what to do, so I decided to mix a polymer clay color. Not sure what I’ll do with it.

If we were having coffee, I’d share that I didn’t do Black Friday shopping this year. That is, I did purchase some new clay supplies yesterday, but they weren’t on sale as far as I could tell.

If we were having coffee, lastly I’d tell you that we had pasta salad with tuna for dinner today. I had originally planned to make it with a staff, but since I don’t want everyone else to catch my cold, the staff ended up making it himself. He initially wanted to offer everyone a bit as a side dish with our regular meal, but I countered that we have enough to use it as a meal. My plan had been that we’d have a tasty meal for once rather than the mediocre meal service food. Besides, we get treats more often than I want to think of. See my point about the St. Nicholas treat: it wasn’t a binge, but it was more than my food plan says I can have and I’m not even on a weight loss diet.

#WeekendCoffeeShare (November 16, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again. It’s nearly 9PM, so no coffee for me. I might make myself a cup of bedtime tea once I’m done with this post (or rather, have the staff make it for me). There’s of course always water too. Let’s chat.

If we were having coffee, first I’d talk about the weather. We’re still having an unusually mild fall season, with daytime temperatures at or around 10°C all week. We were supposed to get rain today, but I haven’t felt any.

If we were having coffee, I’d tell you I’m still struggling, but not as much as I was last week. On Tuesday, I spoke with my support coordinator and explained why I felt the Center for Consultation and Expertise may be able to help. She didn’t really respond, but I’m hoping she’ll take things up with the higher-ups.

If we were having coffee, next I’d tell you I’ve been learning more about autism and ways to support myself and for my staff to support me. There’s this support method called The Essential 5 in English. It was originally developed here in the Netherlands by Colette de Bruin and here has the catchy name “Geef me de 5” (which translates to high-five in English). I hadn’t ever remembered the essential five correctly, but they’re ways in which one’s activity should be structured: What, When, Where, Who and How. If there’s no “What”, as in my day schedule’s “alone time” or even during my supported activities (because I have to choose one on the spot), how can the other four be clear? This is something I struggle with a lot, as now with the shifts assigned to my day schedule, the “Who” is often too rigidly clear but there’s still no “What”.

I listened to a podcast episode by Geef me de 5 on empty time and autism and had a staff listen to it with me too. It was very eye-opening.

If we were having coffee, then I’d tell you that, on Tuesday, I went to me and my spouse’s house for my spouse’s birthday. We also stopped by Ikea and my in-laws’ house. We originally wanted to order pizza or fries, but both the pizza place and the snack corner were closed. My spouse eventually put fries into the Airfryer.

I also took a few things from our house back with me to the institution. First were a number of mounted rubber stamps I used to use for card making. I’m not 100% sure what to do with them now, particularly since most have old ink on/in them, but, if I can clean them, I can re-use them for stamping on polymer clay.

Then I also took a jewelry box with me that contained a number of rings, bracelets and necklaces. One of them was the ring with an amethyst in it that was passed down to me from my late grandma. Unfortunately, that one, as well as most other rings, are too big for me.

If we were having coffee, I’d share I have a ton of creative ideas floating around in my mind, but struggle to get to actually starting any of them. For example, I want to start making my own jewelry again, particularly bracelets and necklaces. I am still in doubt as to whether earrings are suited for me at all, as sooner or later I’ll almost inevitably develop an itch from them.

Anyway, I remember how I used to enjoy making jewelry and I think that with my current day schedule and staff, I should be able to pick the hobby up again.

So far, I did create one polymer clay pendant. I think I like it quite a lot, but still need to sand it before I can actually use it.

If we were having coffee, lastly I’d share a nutrition and exercise update. I saw the dietitian on Wednesday and endured the mandatory talk about all the opportunities to snack and get treats during the holiday season. Quite frankly, if I’m in the mood for snacking, I don’t care whether there’s a festive reason for it. I’m also happy to report I’m still on target weight-wise and intend to keep it this way.

However, I haven’t been all that physically active over the past week. I did meet my goals on my Apple Watch, but things could’ve been better. On Thursday, I had an opportunity to go swimming, but I felt too tired. I now remember that I was supposed to do my physical therapy exercises this afternoon but forgot. Going to do those now!

#WeekendCoffeeShare (November 9, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I apologize for not having commented on anyone else’s posts last week. As I write this, it’s 5:15PM, so I’ve just had dinner. I won’t have my next cup of coffee until 7PM, but at least I’m not writing that it’s too late at night for coffee for me. Let’s have a drink and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s quite chilly, though most days the daytime high is still above normal. Most days, it’s been around 10°C, but yesterday the temperature didn’t climb above 6°C. We haven’t had more than a slight drizzle of rain.

If we were having coffee, I’d share that I’ve been doing okay in the health and wellness department. I walked everyday, though not as far as I’d have liked. I also downloaded the FitOn app onto my iPhone and did a workout on it yesterday. My eating has been okay and I lost half a kilogram over the past week. Sleep has been all over the place though.

If we were having coffee, next I’d share that this week has been tough. You might remember that I shared several months ago about the improvements to my care that would take effect in mid-October. Some did happen indeed, while others didn’t and the end result is that my quality of life isn’t improving.

Part of the problem is the fact that half the team rigidly shove the new rules down my throat and the rest do as they please regardless of what my new day schedule says. For example, in my new day schedule, there are now shift codes assigned to times my staff are with me, so that it’s hopefully clearer for everyone who will be supporting me. Some staff have been rigidly following the rules, while others changed things up, sometimes at the last moment. Most staff also don’t tell me who has which shift a day in advance, yet when I am supported by a staff one day who rigidly follows the rules, they’ll tell me that so-and-so will be supporting me half an hour in advance and not care that I didn’t know the day before because their coworker didn’t tell me. And they’re unwilling to change things up because the day schedule says they can’t. This means I’ve had to deal with new-to-me temp workers three times this week and, at least once, I wasn’t told the day before that they’d be supporting me. This led to me having an outburst and telling my staff that I didn’t want the temp worker. I wasn’t demanding someone else, for clarity’s sake, but the temp worker refused to leave me alone too, despite the fact that I’m not under involuntary care.

There were other things discussed at the meeting that these rules were decided at, but I don’t see these being implemented at all. For this reason, my trust in my support coordinator and behavior specialist has suffered again.

If we were having coffee, finally I’d share that I had a phone appt with an independent client supporter on Tuesday. This appt had been on the calendar for months and I originally intended to say it’s all fine here and to close my file at her agency. That’s not how it went: I was honest that, while I do see my staff have good intentions, it’s still proving hard to figure out the care I need and to make it work with the way the home works. She recommended involving the Center for Consultation and Expertise (CCE) again. This is an organization that helps care agencies and clients when they’re stuck.

I have mixed feelings about this. On the one hand, I am hopeful that an external organization can shed new light onto the situation or, if not, I’m able to accept that my home are doing all they can. On the other hand, I feel slightly guilty for not being able to suck it up when things seemed so positive at the meeting. Hope is the dominant feeling though.