#WeekendCoffeeShare (November 9, 2024)

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.

#WeekendCoffeeShare (November 2, 2024)

Hi everyone on this first Saturday of November. I’m joining #WeekendCoffeeShare today. Can I offer you a drink? Let’s catch up.

If we were having coffee, first I’d talk about the weather. The daytime temperatures have been between 13°C and 16°C this week. We got a little rain here and there, but for the upcoming week, no rain is in the forecast. Daylight saving time also ended last week, so it’s now dark by 5:30PM. If you know me, you know I seriously hate this with a passion.

If we were having coffee, I’d tell you that I haven’t been walking nearly as much as I’d have liked. I didn’t even close my activity rings on my Apple Watch each time this week. Yesterday and today have been quite good though. I signed up for a month-long challenge in the Challenges app, but I honestly don’t think I’m as interested in it as I was the last few times I participated.

On Thursday, I wanted to go swimming, but we arrived at the institution pool only to find out it was closed.

If we were having coffee, I’d share that, as regular readers of my blog know, this time of year is hard for me. Today marks 17 years since my major mental breakdown. I could try to reclaim the month by creating positive memories, but the last time I wanted to do this, I couldn’t make it last beyond that one November. I’m fully intending to stay at my current home for a long while and I can see my staff fully intend to help me in this process, but then again intentions aren’t enough.

If we were having coffee, I’d expand on this further by saying I’ve been quite a pain in the butts of my staff lately. I can honestly see why: I’m (subconsciously) pushing their limits because I think (know?) that, when I’m truly myself, they’ll kick me out. Knowing that abandonment feels safe to me because it’s what I know, unfortunately doesn’t make it any easier to change my actual actions, because when I’m dysregulated, I don’t realize I’m projecting my own fears onto my staff.

If we were having coffee, lastly though I’d tell you about the positive aspects of the past week. Firstly, I went to markets twice this week. Secondly, I tried my hand at creating a little Christmas wreath out of polymer clay. I’m not one to plan my crafty endeavors and in fact I have the snowman I crafted nearly two years ago on display year-round. I really hope to craft a few more little decorations before Christmas truly starts in early December.

#WeekendCoffeeShare (October 12, 2024)

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s nearly 9PM, so long past my last coffee break for the day. However, I’d be happy to pass you a virtual mug of your favorite beverage. My spouse is in search for pumpkin spice latte. Since my blog readership is mostly international, I doubt anyone could recommend a place to find it tomorrow local to here and my spouse can do a Google search too. Anyway, let’s have a drink and let’s chat.

If we were having coffee, I’d start by sharing about the weather. It’s been quite cool with daytime temps below 15°C most days. Today, the daytime high was as low as 12°C. Brrrr! We’ve also had some rain, though none today or yesterday. Next week, we’re supposed to get one day with a daytime temperature of 21°C. Sadly, rain is in the forecast then too.

If we were having coffee, I’d share that, this week, I did okay with my exercise. I didn’t meet my goal everyday, but I don’t care.

On Thursday, a staff and I were riding the side-by-side bike to a nearby town, so that I could pick up a package. (As regular readers of my blog know, package delivery to the institution is hit-or-miss, so I set up a pick-up point in the nearest town as my default delivery address with DHL.) The road leading directly to the town was under construction, so we headed another way. When we were in the next village, the bike got a flat tire. The staff called the home to have someone else pick me up by car and he himself walked to the care home with the bike. It’s really frustrating, because this bike had just had major repairs.

If we were having coffee, I’d share that I did pick up the package yesterday. When in that town, we noticed it was market day. We decided to get some fried fish. Then, when coming to another stand, we heard something about an offer by which, if you’d bought something from four vendors, you could draw a prize, like a voucher. We went back to the fish stand and asked for them to sign our card too. I visited the fish stand like I said, the veggie/fruit stand (where I bought raspberries and lemons), the nuts stand and the olive stand. I then went to draw the prize and it was a €5 voucher. I spent that on licorice. Of course, most food at farmer’s markets is more expensive than at the supermarket, but I love the experience. By the way, if anyone has any ideas for what to do with lemons, your suggestions are welcome. I thought many smoothies had fresh lemon juice in them, but only a teaspoon or so and I have six lemons.

If we were having coffee, I’d tell you that I did a lot of baking over the past week. On Tuesday, I tried baking cookies from a store-bought mixture, but those didn’t turn out good. I then decided to give cookie baking another try on Wednesday, making the cookies from scratch. That was much better! Finally, today, I baked a cake. Don’t tell my dietitian, as I’ve probably gained weight. Weight management can wait.

If we were having coffee, lastly I’d tell you that I got a new day schedule. It doesn’t look much different, but there are some significant improvements. For example, it’s now clear who will be supporting me during the day. The weekend schedule is also now the same as the weekday schedule. I haven’t yet read the schedule myself and, judging from what the staff are saying, it does need a few small tweaks. I’ll discuss this with my assigned staff soon.

Speaking of which, I got a new second assigned staff. I have had one staff as my assigned staff for a few months, but she only works one or two days a week. I now got one of the student staff as my secondary assigned staff. I think she’s quite good at her job despite just starting out.

Friday Feels (October 4, 2024)

Hi everyone. I have a ton of ideas of what to write about floating in my mind, but because of this I struggle to pick one. I’m going with Deb’s Friday Feels. I loved coming up with an F word last time.

F word

My F word for this week is “fruit”. Like I mentioned earlier, I bought a slow juicer. My spouse cautioned me against using it daily because of the risk of microplastics getting into my juice, as the juicer is a Chinese brand. For this reason, I’ve only used it once so far and only juiced an apple.

I since discovered that I can do far more with my blender (which is safe to use according to my spouse) than I used to think. I mean, I have one book of smoothie recipes that has a ton of juice-based ones in it, like recipes for which you need carrot juice, blueberry nectar (which I found out is just sweetened, thickened blueberry juice), etc. I decided to look beyond this book, as I have many other books on the topic of smoothies and juicing.

Today, I made my first green smoothie. Of course, I didn’t use just greens, as that’d make the smoothie taste horrible. I used spinach, pineapple, banana and coconut water. I think this smoothie can compete with the smoothie I made a few weeks back that I said was my favorite. My fellow residents loved it too.

What made me happy?

I’m in a pretty good mood, but there’s little specifically that made me happy. Then again, being in a good space mentally is a good enough reason to be happy, in my opinion.

What made me sad?

Not sad per se. More like frustrated. A skin infection on my face. Thankfully, the staff finally saw that it needed treatment yesterday and the institution nurse agreed, so I now have a salve for it.

Oh, and the fact that the entire town was cut off from WiFi yesterday afternoon and it wasn’t solved until this morning. This is costing the institution lots of money, as the night staff rely on WiFi-connected technology to know when we need them, so now each home had to have its own night staff.

What made a difference?

Two things. First, my support coordinator is genuinely listening to me with regards to my struggles in play therapy and in general. I have this issue with being very much behind emotionally and I struggle with this, because sometimes I can explain the theory, but this doesn’t mean I can help myself in reality.

Another, somewhat related thing was the video interaction support I got on Tuesday. Then, it was just someone recording me and a staff interacting on video without any feedback, but I’m hopeful the staff will learn something by looking at the video at a later time.

It’s October

Hi everyone. It’s October. Several years, I’ve at least tried to participate in blog challenges, such as #Blogtober and #Write31Days. I saw that #Blogtober is running again this year, but I’m not officially participating. Still, I’m challenging myself to blog more this month. I did okay’ish in September.

Generally speaking, I don’t like October. It’s not as bad as November, but it’s not a fun month. Unfortunately, this year so far is no exception.

The weather’s bad, so I didn’t walk today except to a staff’s car to drive to a DHL service point to pick up a slow juicer I’d ordered online on Sunday. It’s a Chinese brand, so I may at some point regret having bought it because of the risk of microplastics in my juice. In fact, I’m already putting a good juicer and blender (my blender is not Chinese but it’s a cheap one) on my wishlist should I decide juicing and smoothie making is a true keeper hobby for me. I’m not buying either until I’ve waited a few months to make up my mind though.

I did start off this month with a new course on Duolingo: intermediate English. So far, most of it is ridiculously easy. Then again, the option I selected on the start screen to determine my skill level made the app think I’m at the early B1 level in the CEFR classification system. My spouse said my writing skills are probably C1 level at least but I’m pretty sure I miss some B level vocabulary. Let’s hope the course will aid in teaching me that.

#WeekendCoffeeShare (September 28, 2024)

Hi everyone. I’m joining #WeekendCoffeeShare again today. It’s nearly 10PM here, so no coffee for me. If you’d like some though, pour yourself a cup and let’s chat.

If we were having coffee, first I’d moan about the weather. I had to check back to last week’s coffee share to see if memory was serving me well, as I almost couldn’t believe the daytime high was above 20°C then. Today, the daytime high was only 14°C. It was raining all day yesterday and most of the day today too.

If we were having coffee, I’d tell you that, as a result of the rainy weather, I almost didn’t meet my movement goal on my Apple Watch yesterday. I was tempted to lower my goal for that day specifically, but my spouse convinced me that would be cheating. I then danced around my room for about 25 minutes so that at least I’d meet my goal. I didn’t meet my exercise goal, but that doesn’t count towards the perfect month award.

During most of the rest of the week, I didn’t walk much at
all either. On Thursday, however, I went swimming. This was great!

If we were having coffee, I’d share that I’ve also been quite fatigued lately. I’m probably starting to experience a touch of the seasonal blues.

If we were having coffee, I’d tell you that I had bloodwork on Monday. I had no idea why and in fact was convinced they got me mixed up with another client. Apparently not. However, I had already had breakfast and one of the things needing to be checked was glucose. I thought this would be problematic, but the nurse said it wasn’t. I finally found out the reason for the bloodwork yesterday: it was the fact that I’d been experiencing night sweats. I had long attributed those to the warmer weather, but then again they aren’t gone now (though they’ve lessened). Fingers crossed for all normal results.

If we were having coffee, I’d tell you that I had a meeting with my support coordinator, behavior specialist and mother-in-law on Monday. It was a bit difficult. Though I could see my support coordinator doing her best to help me, it was still quite hard to feel the limits of what she can do for me.

For example, I had been struggling with play therapy because a staff I don’t realy trust had been attending it with me. My support coordinator tried her best to find a somewhat trusted staff for me in the coming weeks but couldn’t, so I felt like giving in and accepting a staff I at least don’t feel bad about.

The next day, I had a candid conversation with my support coordinator. That was somewhat reassuring. Play therapy on Wednesday was still more or less useless.

If we were having coffee, I’d tell you that next week, I’ll be video-recorded in my interactions with a staff. The goal is for staff to look at the tiny signs that might lead to distress and things they can do or not do to help me.

If we were having coffee, I’d end on an upbeat note by saying I’ve been making a lot of smoothies lately. I don’t really have the energy for polymer clay or the like, but preparing a smoothie takes only five to ten minutes. I always create enough to share with at least some of my fellow clients and they truly appreciate it. My best one was a smoothie with pineapple, banana, coconut water and a pinch of cinnamon.

I also finally managed to make a delicious mug cake. I mean, the ones I made before were okay, but there was always something slightly off about them. The only thing about this one was the fact that I couldn’t wait for it too completely cool before consuming it. Otherwise, it was great!

#WeekendCoffeeShare (September 21, 2024)

Hi all on this beautiful Saturday in September. I’m joining #WeekendCoffeeShare today. It’s 7:30PM, so I just had my last cup of coffee for the day. I also had a delicious smoothie I made. I must admit, I normally don’t make the best smoothies, or at least I don’t really like them myself. This one though was absolutely great! I used banana, pineapple, coconut water and a bit of cinnamon. The cinnamon was old, so even though I’m pretty sure I put quite a bit into my smoothie, I only got a slight taste of it. I shared what I had left with my fellow residents, but since this is a virtual get-together, you are invited to grab a virtual cup.

If we were having coffee, first I’d share about the weather. It’s been absolutely gorgeous with daytime temperatures of about 23°C most of the week. It’s also been quite sunny. Mornings are chilly, but then again it’s September, so that makes perfect sense. Tomorrow is supposed to be the last warm day and then next week daytime temps are supposed to drop to as low as 13°C.

If we were having coffee, I’d probably be stating the obvious if I said I’ve been walking a lot. I sometimes feel guilty when this is pretty much all I do during my allocated activity time. Then again, I tell myself the weather isn’t going to be as beautiful as it is now forever.

I also have been taking photos on my walks. That is, I usually hand my phone to my staff, who then will be snapping the pictures. I enjoy it nonetheless. Yesterday, we were able to capture a bunny.

I have also been loving using Be My Eyes and other image description apps. Be My Eyes was even able to correct me and my staff on what type of bird was swimming in the institution pond.

If we were having coffee, I’d talk a little about the new iOS and WatchOS versions that came out on Monday. They’re quite stable and there aren’t many bugs affecting VoiceOver or Braille use. That’s a rarity with the first release of a major software update. I didn’t initially think I’d care for iOS 18, but WatchOS 11 does have some nice features and I’d need iOS 18 for that. I am looking forward to seeing my Vitals trend in a few weeks.

If we were having coffee, I’d tell you that I’ve been struggling a little with flashbacks and nightmares. I am, thankfully, for the most part still able to cope.

If we were having coffee, I’d share that on Wednesday, I celebrated one year in my current care home. I treated the entire home to burgers again, like on my birthday, but this time the salad I made as a side dish was the highlight for me.

If we were having coffee, lastly I’d tell you that on Thursday, it was my and my spouse’s thirteenth wedding anniversary. We drove to Nijmegen to have lunch at what I consider to be my favorite restaurant, Dromaai. Not that the food is exceptionally good, but I have fond memories of eating out here with my partner when I still lived in Nijmegen.

Friday Feels (September 13, 2024)

Hi everyone. Today I’m participating in Friday Feels. The idea is to answer three questions about the past week and share an F word related to it. The questions are:


  1. What made me happy?
  2. What made me sad?
  3. What made a difference?

F word

My F word for this week is “fall”. Last Saturday, it looked like summer wasn’t going to end anytime soon, since the daytime temperature reached 27°C. From this past Monday on though, the weather’s been considerably chillier and rainier. On Wednesday, the temperature didn’t even get above 14°C. Today is slightly less chilly, but the nights are truly getting colder.

What made me happy?

First, Chinese takeout for dinner on Monday to celebrate a fellow client’s birthday.

Second, a treat of one of my favorite biscuits with my afternoon coffee today.

Third, the fact that I was able to get the WiFi on my iPhone to work properly again here. It turned out that turning off a privacy setting on my phone for this particular network, solved the issue.

Last but certainly not least, swimming! On Wednesday, I heard that two of my fellow residents were going swimming at the institution pool that evening. Usually, about seven or eight residents go and it’s too overwhelming for me, but since there was another activity too, just these two guys were going. I took up the courage to ask my staff whether I could go too. It was amazing!

What made me sad?

I experienced a slight increase in bad memories over the past week. Mostly, they were manageable, which is why I’m not using the word “flashback” to describe them.

What made a difference?

There are several things that made a difference this week. First, the fact that one of my trusted staff returned from vacation this week. Most are still on holiday, so the next few weeks will be somewhat difficult still, but I managed this week.

Second, the weather, like I said, is very different and it made a difference, in that I could sleep under my weighted blanket without sweating excessively. This is important, because until now I thought something might be wrong with me. I guess not.

Third, the new agreement that staff will no longer unlock the door for me when I want to elope and will physically restrain me if necessary to keep me from for instance climbing over the fence. I saw the agreement on Tuesday and, though I still have some questions about it, I am for the most part relieved about it.

#WeekendCoffeeShare (September 7, 2024)

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s 7:40PM as I start writing my post, so like most times, I’ve had my last cup of coffee for the day. I will have a glass of my favorite soft drink in about half an hour and after that it’s just water, or maybe a cup of bedtime tea. However, I’d love for you to join me for a virtual cup of coffee. Let’s get into my post.

If we were having coffee, first I’d rave about the weather. After all, if you know me, you know that in my opinion summer is the best season. It’s September, but the weather is still summer-like. During most of the week, we had daytime highs above 25°C. Tomorrow, it’s supposed to cool off slightly and after that, sometime next week the temps are supposed to drop to 15°C.

If we were having coffee, I’d tell you that I got in a lot of exercise minutes over the past week, mostly walking. I’m doing a challenge with my spouse on our Apple Watches that lasts up till this Monday and so far, I’m doing much better. I had expected to be slightly better because my spouse is a truck driver, but then again we have the same movement goal even though I’m shorter and as a result lighter than my spouse, which means I burn off fewer calories with the same activity.

If we were having coffee, I’d share that I had my second play therapy session on Wednesday. The first was a bit of a disappointment, because as soon as she saw my staff, the therapist started saying I could come alone next time. I felt mostly disappointed about the fact that she hadn’t asked me or my staff why I need a staff to attend our sessions. When I explained this at this week’s session, she was totally cool with it.

We mostly played with PlayMobil®, which was really intriguing. I did overshare a bit this week, which I later regretted. It feels really challenging to set healthy boundaries, which is one of my goals that I told the therapist about.

If we were having coffee, I’d share that I spoke with my support coordinator again today. On Monday I had a meeting with her and the behavior specialist. One of the things I’d asked to be implemented as soon as possible, is the agreement that staff won’t unlock the door for me when I’m in crisis and will, if necessary, physically prevent me from leaving the home. I had since wondered where the agreement that the door be unlocked came from. I looked at my support agreements, but there was nothing. Today, my support coordinator looked all through my file and couldn’t find the agreement either. This frustrates me, as honestly I have no idea who came up with it. It wouldn’t have been as frustrating, had this not been interpreted as a rule by literally all staff, even staff who hadn’t previously let me out the door. I mean, on Thursday I said I was leaving in an agitated tone and immediately the staff said she’d unlock the door for me. It frustrates me to no end that staff are making rules that they don’t write down and that, as a result, can’t be discussed with me. I hope that, once my support coordinator writes the agreement that I can’t be let out the door, which she’s going to do on Tuesday, this at least will stop in this case. I’m pretty sure there are many other unwritten rules about my care though.

If we were having coffee, lastly I’d tell you I’m really feeling like doing something with polymer clay again, but I am rather uninspired. I did try to make a flower pendant this evening, but so far it’s just a cut out flower with no detail.

A Good Meeting With My Support Coordinator and Behavior Specialist

Hi everyone. I really want to write more about what’s on my mind and, after a few months of struggling, I finally have some good news. I just saw in my private journal in the Day One app that it was a year ago when I heard my moving date to this home. I moved two weeks later. How time flies! After a meeting with the behavior specialist and my support coordinator on Monday, I can safely say that, if the things we agreed on will actually happen, I’m going to have a pretty good life here.

I had requested this meeting a few weeks ago and it was originally scheduled for the 17th of September, but thankfully there was time to do it on Monday. We mostly discussed a document I’d written sometime in early August detailing my care needs (as I see them). Thankfully, most were things the behavior specialist and support coordinator could agree with me on. Here are the things we’ve decided.

1. Less staff switches and more clarity about who will be supporting me during the day. Currently, it’s only clear who will do my two-hour-long activity in the afternoon and the rest is guesswork. I wrote that I can’t help trying to figure out in my head who will be supporting me for which of my eight or so support moments during the day. The support coordinator and behavior specialist came up with a schedule for who will support me when based on what times each staff comes on. This, and all other agreements, won’t take effect until sometime in late October.

Staff will also get designated time to write up their daily notes about me. I also requested staff do a short handover (like, two minutes on how I’m generally doing) when they switch. I can’t remember what was agreed upon about this, but it should be relatively easy with the fact that I’ll have mostly no more than four staff supporting me over the course of the day.

2. My day schedule for weekends will be changed to be the same as my weekday schedule. Currently, there’s a fifteen to thirty-minute time difference, which is confusing. I originally proposed to remove an activity time slot from my one-on-one on weekends, so to make it very different, but that didn’t seem to be a good idea. I honestly mostly said this to stick to my allocated one-on-one hours. After all, the other support coordinator used to be really strict on these.

They’re going to try to get me slightly longer staff support in the evenings. Currently after 7:15PM, I’m supposed to be by myself except for a few two-minute check-ins.

They were also very clear that appointments with the physical therapist, play therapy etc. are not dependent on my day schedule. What I mean is, if they happen to be during a support moment, fine, but if the therapist’s most suitable moment is outside of my one-on-one, that doesn’t mean I’ll need to compensate or go to therapy without staff support. The other support coordinator had been shoving my day schedule into the physical therapist’s face before she could even pull out her calendar, which led me to say that PT isn’t day activities so shouldn’t be during my activity time slot and I’ll go alone if this means no support.

Finally, it was agreed upon that, if I come out of my unsupported time in distress, staff will help me and this does not need to be compensated for (unless it takes so long that staff’s other tasks will suffer).

3. The support coordinator will be advocating for there to be a trusted staff for me at least part of the day most days. The other support coordinator is the home’s planner and he’s been really tough to get along with, so we’ll see where this goes.

The support coordinator did say that she and my assigned staff will try to see me regularly too. I can also ask one of my trusted staff whether I can talk with them (support coordinator or assigned staff) about something.

4. I asked for recognition of how far I’ve come over the years with respect to for instance accepting temp workers, accepting unexpected staff changes, etc. This was quite a hard one to explain, but it eventually made sense.

5. I asked to no longer be let out the door when in distress. I agreed to be physically restrained and led to my room if necessary too. This is going to take effect sometime next week, since I felt really let down when the staff opened the door for me.

I later realized that this is really already in my crisis plan, but it contradicts the support agreement that I’m free to leave the home as I please and as such staff unlock the door when I want to leave. How this will all be put down on paper, is not fully clear with me, but I’m confident it will work out.

Overall, I’m really pleased with the outcome of this meeting. The only problem I can foresee is the other support coordinator, who is really coordinator for my side of the home, discarding everything as unworkable.