#WeekendCoffeeShare (November 1, 2025)

Posted on by Astrid

Hi everyone on this first day of November. I’m not struggling as badly with memories of my admission to the psych ward (November 2, 2007) as I was in previous years. However, I’m struggling nonetheless.

Today, I’m joining #WeekendCoffeeShare. It’s been a while. I just had my last cup of coffee for the day and will probably take a break from writing this post for my 8PM soft drink and meds. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been a mixed bag but mostly rainy with daytime highs around 13°C. I didn’t do a lot of walking, but still managed to meet my movement goal each day this week. Unfortunately, it seems that my Apple Watch doesn’t care that I paused my activity rings while sick with probable COVID during the second half of September, as my streak is now down to 33 days.

If we were having coffee, then I’d moan about the fact that the care home is chronically short-staffed. There is, fortunately, a new staff here who started orienting a few weeks ago. She started her orientation on my side of the home on Tuesday. That day, I tried to make smalltalk with her, knowing that she’d be oriented to my activity the next day, but she hardly said a word. The next day, indeed, she was oriented to my activity. This went okay’ish, in the sense that I accepted her for the whole two-hour time slot and together with the staff doing the orienting, explained several activities. However, once again my attempt at getting acquainted with her didn’t get a response. The staff complimented me on how well I’d done. I told her she’d probably use that against me. I was right.

In the evening, the staff said she’d be orienting the new one to my morning routine the next day. Having hardly spoken with the new staff, I wasn’t comfortable with being naked around her yet, but the staff didn’t accept this. She claimed I hadn’t accepted the new staff in the afternoon either and just don’t want to meet new people and screamed that soon there’d be no-one left. I tried to explain my point of view, with the help of another staff, but to no avail.

On Thursday indeed the staff tried to force me to accept the new one for her orientation. She yelled that I had one chance and if I refused the new one now, she’d be considered as having had her orientation to me. This, I consider horribly unfair, as with the other clients, new staff get multiple orientations. But it’s in my rules, the same rules about no completely unfamiliar staff. I was originally told that the reason for the rules is simply money, ie. the fact that regular temp workers are not given an orientation period so I’m lucky to get one chance with them. I understand this, but I don’t think it should apply to staff who do get an orientation period. And for what it’s worth, I never said I needed temp workers to be oriented to me, but staff need to know these workers are still strangers to me and aren’t as familiar as the staff who’ve been working here for years. No rules can explain this, it’s about empathy. And I’m pretty sure the staff telling me off about refusing the new one, doesn’t have much of that for us clients.

If we were having coffee, I’d also moan about the fact that I now have no assigned staff at all. Like I said a while ago, the student one left for the intensive support home a month ago. The next one doesn’t want to work with me for now due to me having hurt her feelings. And yesterday I found out that the third one is off sick. I E-mailed the support coordinator asking her that, if I need to have another assigned staff, it won’t be the staff who I mentioned above. Don’t get me wrong, she’s fun-loving and great with activities, but she doesn’t know me behind the rules.

If we were having coffee, I’d try to end on a positive note. Yesterday, like six weeks ago, I joined the dance party at the institution townhouse. This time, I decided that I could deal with there not being a staff member for me and to just ask a volunteer if I needed help. One of the reasons was the fact that there were only two staff who are authorized to give meds at the home during the dance and I didn’t feel like I could ask one of them to accompany me, yet the other staff haven’t been oriented to me yet. I considered asking that one of the temp workers accompany me, but, for reasons that you’ll understand if you’ve read this far, felt this would be used against me. The dance was fun.

Finally, one more slightly positive note: we had general elections here in the Netherlands on Wednesday and, thankfully, Democrats 66 (D66) won. This isn’t the party I voted for, but it’s much better than the far-right Party for Freedom, which came out second. D66 is the most progressive, queer-supportive party out there. The reason I didn’t vote for them is the fact that healthcare and social security matter even more to me and the fact that D66 would likely need an economically right-wing party on the government too. However, unless Rob Jetten (D66’s leader) is a total hypocrite and cooperating with the far-right JA21 in favor of the left-wing GroenLinks-PvdA, things will be okay’ish in this respect. In any case, I’m looking forward to the first openly gay prime minister.

#WeekendCoffeeShare (September 27, 2025)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare for the first time in over a month. It’s nearly 10PM as I start typing this, so no more coffee for me. I did have a mug of green tea about half an hour ago, but for now it’s just water. Feel free to grab yourself a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Not that I’ve experienced much of it, as I spent most of the week indoors with what I believe to be COVID. The daytime highs most days have been around 17°C and we didn’t get much rain.

If we were having coffee, then I’d share that I paused my activity rings on my Apple Watch because I was too obsessively trying to meet my goals while being sick. I originally intended to restart them yesterday, but for now they’re on pause until this coming Tuesday.

If we were having coffee, then I’d tell you that, today, I finally feel like I might be on the mend. Being me, I did immediately go for a 30-minute walk. My average heartrate was 140BPM, which is high even for me. Let’s hope I won’t be exhausted tomorrow.

If we were having coffee, then I’d share that my spouse finally visited me today. We hadn’t seen each other in a few weeks even though it was our wedding anniversary on the 19th. Then though, I was sick with that could-be COVID thing. Today, we still didn’t do a lot. We went to a nearby pancake place to have lunch.

If we were having coffee, I’d tell you that, on Wednesday, the Center for Consultation and Expertise consultant came by. Like I said on Tuesday, I was only informed a day in advance and the consultant gave as little information about herself as she could (ie. just a first name). I feel incredibly distrustful of the entire process because of this. One of my assigned staff, the student, attended the meeting with me and it was more her telling the consultant what she thinks could be improved about my situation than me. I honestly fear this whole consultation is going to be a waste of time and money, as if the staff already know what I need (which, frankly, they don’t), why involve an independent consultant?

If we were having coffee, lastly I’d share that the student who’s my assigned staff, is leaving on Monday. She’s going to work at the intensive support home I used to live at and I’m struggling not to use that against her. I did, with some difficulty, create a necklace for her, which I’m going to give her when she has her last shift here.

#WeekendCoffeeShare (August 15, 2025)

Posted on by Astrid

Hi everyone on this warm Friday evening. I’m joining #WeekendCoffeeShare. I usually do mine on Saturday, but I’m motivated to write now so let’s make use of it. I just had my evening soft drink and a single-serving bag of chips. I’d recommend you’d grab something to drink if you were here. Let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been hot all week. In fact, I’m pretty sure we have a local heatwave, meaning five days in a row of daytime temps above 25°C, of which three with daytime temps of 30°C or above. I haven’t checked the news in months and don’t want to check it now, but I don’t think it’s a national heatwave.

If we were having coffee, then I’d share that, thanks to the nice weather, I was able to eat outside three or four times this past week. Did I share my spouse gifted me a new outside table, because I’d broken the one I’d gotten last year? My spouse had ordered it online and had had it delivered to the institution. We hadn’t seen each other since, so yesterday after a lot of pestering, I decided to snap a picture. I rarely take pictures fully independently, so if this one’s unclear, I apologize.

If we were having coffee, then I’d tell you I’m still going strong with my movement and exercise goals on my Apple Watch. On Saturday, I did in fact break my active calorie record. Yesterday, I broke a record with the longest bike ride. My Apple Watch also said I burned the most calories during a cycling workout, but I doubt that’s true.

If we were having coffee, next I’d announce my participation in the Walk on Sunshine on October 4. It’s a walk to raise money for the Dutch cerebral palsy charity CPNederland. The goal is to walk at sunrise. Sunrise is at 7:45AM that day and the staff usually don’t get here until 7:30, but one of the staff agreed to come here early and do the walk with me. I signed up for the 5km walk, because that’s a challenge for me particularly in the morning, but not impossible.

If we were having coffee, lastly I’d tell you all that I’m still struggling. I experience a ton of trust issues towards my staff and am not sure these are entirely unfounded. Like, today my spouse and I were on the phone during my entire late afternoon activity and, though it was nice to talk to my spouse, I worried that the staff are going to cut my care hours because of it. After all, for some time they tried to make my spouse visit me each Sunday so that they could cut my hours.

Honestly, I think I’d be much more independent if I knew that, when I have a bad day or a bad moment, I can always get some extra support. In this sense, my psychologist back in the mental hospital was right that anxiety is part of the reason for my dependence. However, her subsequent actions to “treat” me, ie. kicking me out of the hospital into independent living with minimal support, actually worsened my situation. So did my staff’s decision back last year about my having to compensate for every moment I needed extra support due to distress. These and other strategies, while intended to encourage self-reliance, actually achieved the very opposite. After all, my abilities fluctuate and my mental state doesn’t adhere to a day schedule, so that I’m only in distress when I have one-on-one. No, I don’t purposefully work myself up in order to get more support, but my mistrust of my staff’s continued actual support does lead to distress.

#WeekendCoffeeShare (August 9, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM, so I just had my last cup (two cups, in fact) of coffee for the day. I’ll probably take a break from writing this blog post for my soft drink at 8PM. Please join me as we chat.

If we were having coffee, first as usual I’d talk about the weather. It’s truly beautiful! Today, the temperature rose to 25°C and it was quite sunny. Rain isn’t in the forecast until next Thursday I believe. I know, climate change and all, but I’m enjoying the summer while I can.

If we were having coffee, I’d share that I am still going strong with my physical activity goals. Yesterday, a staff mentioned the trampoline that’s on the campsite near the institution and we decided to check it out. Today, I went on the side-by-side bike with another staff. Because of this as well as having walked a lot today, I might break my active calories record according to my Apple Watch.

If we were having coffee, next I’d tell you that I unfortunately haven’t been crafting much lately. On Sunday, I created polymer clay earrings that are still waiting to go into the oven. Other than that, no crafty endeavors.

I did, however, create a dessert for myself and my fellow residents on Monday. It was good.

If we were having coffee, then I’d tell you that the rest of the week was quite hard. There’s this temp worker who is absolutely clueless about how to support me and yet he’s assigned to me almost everyday. Staff keep saying I should be giving him feedback more when he’s acting in an unsupportive way. First of all, well, no, that’s not my responsibility. They don’t ask the other clients to give feedback either, but when I point this out, they say it’s different for them because they can’t. I can, sometimes, a little bit and I tried this week in fact, but the temp worker didn’t learn a thing from it. Then I get told that the staff assign to me who they choose and it’s my responsibility to deal with it.

I also was told that, when the staff feel someone is trained well enough to support me, they will be assigned to me and I don’t have a say in it. All this comes across as if it’s me being deliberately difficult with certain staff based on arbitrary things, while in reality it’s the way that they act that makes certain staff more difficult for me to deal with than others. Besides, I’ve had staff assigned to me who themselves don’t even feel they’re capable enough just because these staff want to please and their colleagues pressure them. It may be easiest for staff to assign the most inexperienced temp worker to me because I try to be helpful and, when I am not, it is easy to blame me for allegedly playing favorites.

If we were having coffee, lastly I’d share that the Center for Consultation and Expertise found a suitable consultant for my case, but due to the summer holidays, the first contact won’t be until the end of August. This will unfortunately be a phone call with the behavior specialist. I’m not very trusting of the whole process at the moment, to be honest.

#WeekendCoffeeShare (August 2, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s almost 10:30PM, so no more drinks other than water for me. That green tea I got a month ago has gotten a meaning of its own lately, symbolizing my lack of independence and self-determination. But I’m getting ahead of myself. Grab yourself a favorite drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been rainy most of the week and honestly less warm than I’d like it to be. I refuse to wear long-sleeved shirts in the middle of summer, but today, I almost regretted going out in just a T-shirt.

If we were having coffee, I’d tell you that in part due to the weather, I haven’t been as physically active as I’d have liked lately. Today, my spouse and I wanted to go for a walk but it was raining pretty hard so we turned around within five minutes. That was when I was out in just a shirt. I’m hoping I can still meet my movement goal on my Apple Watch today.

If we were having coffee, then I’d share that I was at our house today. My spouse got a new cat about six weeks ago and I hadn’t met him yet. His name is Caleb. Unfortunately, he hid under our bed as soon as I walked in the door and had to be dragged down by my spouse for me to be able to pet him.

We originally intended to cook dinner together or get pizza delivered, but since the weather didn’t permit us taking a walk and my spouse didn’t want to stay inside the house all day, we decided to drive to Apeldoorn. I needed a new jacket, after all. My old one, I’d bought seven years ago and it’d finally gotten damaged beyond repair in addition to being quite dirty. When my spouse asked me my size, I made a guess. It turned out the old jacket was several sizes bigger. Then again, back in 2018 I was at least 10kg heavier than I am now. I finally got a jacket with a size inbetween my original guess and the old one’s and it fits perfectly.

If we were having coffee, then I’d tell you that, as of yesterday, I’m once again a tiny step down with my medication. Specifically, I’m now on the absolute lowest dose of pregabalin. I was never on a high dose anyway, in fact having been on my start dose for years, but as it is in medicine, apparently going up is easier than going down. Six weeks from now, I’ll most likely be completely off of pregabalin.

If we were having coffee, then I’d share I’m still struggling. Part of it is the realization that my life is far from “normal” and the fact that I feel guilty about not accepting this reality. I constantly have my last home’s staff’s words in my head about never having a perfect day. I am also constantly thinking of ways in which my life could be even a tiny bit more meaningful.

If we were having coffee, finally I’d share that I did have some good moments over the past week. Like I said on Thursday, I have been quite active in the kitchen. I also on Thursday crafted another clay parrot.

The staff who’s leaving, took this one and the one we made last week home with her yesterday.

Tomorrow, one of my assigned staff is going to do my morning activity with me and we agreed to work with clay again. I have yet to think of some ideas for what to make. She wanted an elephant, but I’m not yet sure how to go about doing that.

#WeekendCoffeeShare (July 26, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s 9:45PM, so all I’ll have to drink before going to bed is water. I don’t mind though and hope you don’t either. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been raining all week, but temperature-wise, it’s been nice. We had daytime highs in the low 20s Celsius most days. Today, the temperature rose to 25°C. I hadn’t expected it to rain, so didn’t take a jacket with me when driving to Apeldoorn with my spouse. Thankfully, it only rained when we were in the car or somewhere else inside.

If we were having coffee, next I’d share that my spouse and I may not be divorcing after all. It’s a long story that is too personal to share on a public blog. The short version is that I sent an impulsive text last week asking my spouse to finally make arrangements, because I wanted to live independently. The reason for the text had nothing to do with my spouse, but it did get things set in motion. As it turns out though, it’s probably not practically in our best interest to divorce.

If we were having coffee, I’d go into the reason for said text: one of my “favorites” among the staff is leaving and this is at a time when I’m struggling significantly with most other staff seeming at once not to agree on any way to support me but somehow agreeing that I’m a pain in the neck. At least on a weekly basis, I hear stuff like “You can’t go anywhere anyway” or “Your spouse doesn’t want you in this state” when I’m being restrained or otherwise having my autonomy taken away.

Furthermore, it looks like my staff have decided that neither I myself nor my spouse have my best interest in mind, while in that order, we’re the ones most adamantly advocating for me. However, I saw impulsive comments my spouse made after we found out divorce may not be an option cited in my report. This wouldn’t have been such a big deal, had staff also objectively reported their own comments, like all the “You can’t go anywhere anyway” stuff. The way it sounds now, my spouse sounds like the bad one.

One of my assigned staff even got me to agree on getting more information about guardianship because she somehow feels that a person who doesn’t know me but knows the law is better able to make decisions for me. I have yet to tell my staff no on this one.

If we were having coffee, I’d share that I did finally work with polymer clay again. I made a parrot for the staff who’s leaving, because this staff has two parrots. We have plans for making her other one out of polymer clay sometime this coming week.

If we were having coffee, lastly I’d share that I’ve been obsessing over recipes and cooking again. Like I said yesterday, I made a curry for myself and my fellow residents on Tuesday. The staff who helped me with it, proposed we do cooking again this coming Tuesday. This time, I chose a pasta bake. I’ve also been making smoothies and overnight oats recently.

I have an app on both my PC and iPhone to organize my recipes. It’s called Recipe Keeper and I’m half convinced it’s spyware like TikTok. Other than that, its only drawback is the fact that somehow I can’t have my password manager remember the password. This has me paranoid too. However, it’s the only app that’s available on both iOS and Windows that is remotely useable for me.

#WeekendCoffeeShare (July 12, 2025)

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a blog post. I really would like to write more, but I’m struggling massively. Today, I’m once again joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. I didn’t end up having the green tea I mentioned last week, but I might today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Honestly, I can’t remember what the weather was like early in the week, but the last few days, it’s been good: partly cloudy with some sunshine and daytime highs around 25°C.

If we were having coffee, next I’d tell you that I’m still going strong with my movement goal on my Apple Watch. I never ended up doing those fitness mat exercises I mentioned last week, because I had to cancel my movement therapy session this week. I’m hoping I can do some exercises next week.

If we were having coffee, then I’d share that I’ve been quite depressed lately. On Sunday, I was even talking ending my life and, on Monday, I had a meltdown in which I self-harmed.

The staff who witnessed me talk suicide and who was the only one able to comfort me after my meltdown, asked the behavior specialist and team manager to come and talk with me. This meeting took place on Wednesday morning, but another staff attended it with me. I was masking heavily during the meeting and constantly rationalizing my feelings away. The team manager at the end said that he was glad I was doing okay, because there’ll be a time when he won’t have time for a meeting. That plus something about things possibly getting worse. This caused my thoughts to spiral and this got me intensely desperate. I was able to tell the staff who’d attended the meeting with me, that this comment caused me distress and she would try to relay this to the team manager.

When, about an hour later, the staff who’d witnessed my meltdown etc. came on shift, I expressed my despair to her, By this time, I was inconsolable. I cried and cried and cried and was intensely hopeless.

Finally, the staff contacted the behavior specialist, who came again to talk with me and this staff. This was an okay meeting. I’m still skeptical things will improve, but not entirely hopeless.

If we were having coffee, I’d share that I’ve been reading some books about autism by autistic authors. One is The Autistic’s Guide to Self-Discovery. I’m unfortunately struggling quite a bit to concentrate on it, which in turn reinforces the belief that I’m too broken to benefit from it.

If we were having coffee, lastly I’d tell you that my best friend’s mother came by on Thursday. She brought the new nightstand that she and my best friend had bought at Ikea to replace the one that broke when I fell over it several weeks ago. She also brought me a birthday present: some colors of Sculpey Soufflé, which is a brand of polymer clay I don’t have yet.

We went to have lunch at Hema and then went to the supermarket to buy blueberries and candy bars for me and carrots for her. I also told her about my state of mind, since she’s currently my informal representative. I do want to make my best friend informal representative for me too, especially once we’re formally divorced. I still want my now mother-in-law on it too because she has the capacity to attend meetings with me. However, I mostly want to make sure that in no way are my parents or sister contacted to make decisions about me.

#WeekendCoffeeShare (July 5, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. I just had my last cup of coffee for the day and probably won’t finish this post before I have my evening soft drink, but I might be able to get my staff to prepare me a cup of green tea at around 9PM. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Oh my, has it been hot! On Tuesday and Wednesday, we had daytime temps of 36°C. The weather has been more bearable later in the week and tomorrow, we’re finally supposed to get rain. We were supposed to get a few thunderstorms on Thursday too, but thankfully not.

If we were having coffee, then I’d tell you that I did manage to meet my movement goal on my Apple Watch each day this week. Not by walking on those hot days, of course. That is, on Wednesday evening I did go for a short walk. On Tuesday, I stayed indoors all day and got my exercise by dancing. I did walk on every other day.

If we were having coffee, I’d share that I talked about exercise with the movement therapist on Wednesday. Next week, she’s going to come up with some exercises that I can do on my fitness mat.

If we were having coffee, then I’d tell you that my best friend and I went out for dinner yesterday at the Thai restaurant we took my parents to for my birthday two years ago. I had chicken with black pepper, garlic and vegetables and of course rice that was enough to feed a family of four. I loved the food, but I did feel pretty overloaded afterwards.

If we were having coffee, next I’d moan about my day schedule. It’s still frustratingly unclear. This got me to have an outburst on Wednesday, because of course it was too hot to go for a walk and the staff assigned to me couldn’t do dice games. It all boils down to the fact that I feel overwhelmed by all the activity options and then I end up doing nothing. I’m really unsure as to how to solve this issue and sometimes I feel like a nagger.

If we were having coffee, finally I’d tell you that, thankfully, I’m still able to appreciate the little things in life. Like the green tea I mentioned above. On Wednesday, I was talking to my best friend, who was having a cup of tea at the time, and this got me thinking that even though it was 9PM, no-one said I couldn’t at least ask for a cup of tea myself. I prefer plain green tea, so I went to the living room and asked the staff for a cup of green tea. She was okay with this, so the next day, when she worked again, I decided to ask her for green tea at 9PM again. I’m seeing this as a treat. Same with my extra cup of coffee this morning when I woke up. Of course, people living independently might take their tea or coffee at the time they wish for it for granted, but I don’t.

#WeekendCoffeeShare (June 28, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. No more coffee for me, as it’s nearly 9PM. I however do still have some slices of cake with nuts and caramel left over from when my sister and her family came over this afternoon. I also have a bag of mini brownies in my cupboard. I didn’t even know I liked brownies, but yesterday we got one with our coffee when my best friend, my parents and I were eating out. They were great! When my father told the waiter that it was my birthday, he offered me a bag of brownies as a treat. So let’s munch on some sweetness while we have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. No complaining from my sister or my nieces about the heat today, yay! It was 26°C this afternoon, but apparently that’s doable for them. The rest of the week was a mixed bag. Early in the week, we had quite windy weather that made it feel chillier than it was. I even wore a jacket on Tuesday.

If we were having coffee, then I’d share that, thank goodness, I survived my birthday! I’m now 39. That’s not what I mean though: I made it through both meeting my parents and the visit from my sister and her family.

Yesterday, my best friend and I drove to Groningen to meet my parents. We walked some time around a library / study hall thingy which had as its only positive for us that you could oversee the city from the roof. Most of the way up, we were able to use escalators, but we had to walk up a flight of stairs to get to the roof. This was a bit scary for me.

After a few hours, we went to a restaurant, the one with the brownies. I was dead set on ordering something I wouldn’t normally eat, so chose the rib eye. When I ordered, the waiter told me it was served with mashed potatoes and, by this time, I was a bit overloaded so didn’t ask for an alternative. Thankfully, my best friend did and I got fries.

The food was good, but seeing my parents was, well, awkward. Thankfully, no arguments and my parents engaged more with me and my best friend than last year. I, however, didn’t want to give them a reason to start making triggering comments so I only replied “Fine” when my mother asked how I was during dinner.

My sister and her family visited me at the institution today. This was actually quite a positive experience. My nieces, who are five and three, were also a lot more engaging with me than last year and a lot less cranky. I allowed both of them to create something with my Fimo Kids clay. I told them I’m going to cure their creations in the oven and could be mailing them their way. Then, my brother-in-law said they’d be in Apeldoorn in a few weeks and could pop over here to pick up their creations then. I actually think I like that.

If we were having coffee, then I’d tell you I got a fitness mat for my birthday from my sister and her family. I really want to work on my strength, but boy is this hard. I tried planking and couldn’t even hold it for ten seconds. When I did a few squats too then checked my heart rate on my Apple Watch, it was 179. It quickly dropped when I was just standing, but this is a good reminder I will want the physical therapist’s advice on starting a strength training routine.

If we were having coffee, next I’d share that we had the institution summer festival on Tuesday and Wednesday. I didn’t participate much, but I did take part in a climbing activity. This was so scary!

If we were having coffee, lastly I’d tell you my assigned staff, behavior specialist, physician and some others had their meeting with the Center for Consultation and Expertise (CCE) on Wednesday. The CCE are going to ask for a consultant to come to my care home and observe me and the staff and on that basis they’re hoping to provide suggestions for better support. I was initially quite pessimistic, but am now cautiously optimistic that things might improve.

#WeekendCoffeeShare (June 21, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare this evening. It’s 5:40PM as I type this. I’d advise you to drink lots of water today, as it’s hot outside, but if you’d like a coffee, I’ll gladly serve you one. I also just heard that one of the staff ordered a dozen bottles of diet coke (and I mean the 1.5l bottles, not single-serving bottles), so if you’d like a coke, that’s okay too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. Did I say it’s hot? Yes, I did. The daytime high today was 30°C. That plus lots of sunshine and poor air quality means I may go outside for a bit at 9PM or so, but not now. The rest of the week, the daytime temps have been lower, but I’ve been able to wear short sleeves each day.

Tomorrow is supposed to be another hot day here in the eastern part of the country, but after that, we’re getting some rain and lower temps (though still above 20°C). I’m already looking at the weather forecast for next Saturday, as then my sister and her family will be visiting me for my birthday. Let’s hope it won’t be too hot, as then my sister and her kids will most likely be cranky.

If we were having coffee, next I’d share that I did meet my movement goal on my Apple Watch each day this week again. That is, each day except for today so far, but I’m pretty sure I’ll meet it today too despite only one walk.

If we were having coffee, then I’d tell you that a staff handed me some shorts, shirts and a few other clothing items that she no longer wears. We did have to throw a few things away that I suspected would be worn out soon or damaged in the washing machine. Overall though, I’m very happy with everything she gave me.

If we were having coffee, I’d also tell you that I fell last Sunday. I had just finished a polymer clay project and was walking out of the bathroom after having washed my hands when I stumbled over an open drawer of my nightstand and fell. I apparently fell backwards, hitting my head quite hard on the floor. The staff said I was responsive right away, though I have a small memory gap. After a while, I got a major headache and my neck also started hurting.

My father broke his neck when he was young and didn’t find out until several days later. This thought crept up on me constantly and, not knowing that if I had broken or seriously damaged my neck, I would’ve felt severe pain right away not a while later, I felt quite anxious. My staff wasn’t able to reassure me either. Thankfully, my GP’s nurse practitioner, who came by on Friday to check on me, was. I now am to take paracetamol four times daily for the next few days to lessen the pain, in hopes that I’ll move my neck more and it won’t stay stiff. I’m glad my anxiety is also less, because that too was keeping me from moving my head.

If we were having coffee, lastly I’d share that, though I have a zillion ideas for what to do in the crafting, physical activity and writing departments, none of these seem to materialize. This frustrates me to no end. I really hope there’s a way for me to get some more structure in my activities without it becoming too compulsive.