#WeekendCoffeeShare (April 19, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare tonight. It’s almost 11PM here, so definitely no more coffee for me. If you’d like to grab a drink, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. We finally got rain. Not as much as was originally thought and not nearly enough, but we got rain. The temperatures have also been lower, usually around 15°C. This is still warmer than normal, but I still yearn for 20°C.

If we were having coffee, then I’d tell you that, as a result of the rainy weather, I haven’t walked as much as I did in previous weeks. I still kept my perfect streak with respect to my movement goal on my Apple Watch, but didn’t meet my exercise goal everyday.

If we were having coffee, I’d share that I’ve finally been crafting again. I created a polymer clay bear holding a heart for my support coordinator, who is on maternity leave. Unfortunately, one of its ears fell off during baking, but thankfully I noticed it in time and was able to add a new ear.

I also made another attempt at creating a polymer clay trinket dish today, but failed once again.

If we were having coffee, I’d report that I had a meeting with the intellectual disability physician, who prescribes my psych meds, on Wednesday. The good news is that I’m allowed to further taper my antipsychotic. The bad news is no answers regarding my tremors. She thinks they may be related to my spastic cerebral palsy and this means that they can get worse when I’m stressed.

If we were having coffee, I’d tell you that I had a dietitian’s appt on Wednesday too. This went well. I’m staying in a sort of acceptable weight range and not having binge eating episodes or purging. My next appt will be in three months.

If we were having coffee, I’d moan about the temp worker situation once again. On Wednesday, when like I said I had two appointments, the staff wanted to orient a new “regular” temp worker to me. As soon as they told me, I told them that this wasn’t going to work out that day, but they kept telling me to see what’d come out of my doctor’s appt first and then we’d discuss it again. Well, no-one ever allowed for any discussion after the appt and, when the time came for the worker to be oriented, the staff doing the orienting kept pushing me in overt and covert ways to accept him. Like, the temp worker was constantly sneakily, without talking, being in my presence. This gave me a horribly unsafe feeling, because I, being blind, couldn’t be sure whether he was there or not.

The staff doing the orienting at one point seemed to show some understanding and told me she was going to talk it over with the other staff. She came back to tell me that it’d been agreed between my assigned staff, the support coordinator, behavior specialist and the team manager that, if I refused him now, I’d had my chance. She never told me who’d told her that when she was “talking it over”, so I assumed it was my assigned staff. I still refused the temp worker and to this day feel horrible about the whole situation. I mean, this whole agreement among the powers-that-be is showing that they believe I refuse staff for their one orientation moment just because I feel like it. Honestly, I still disagree with that whole thing about just one orientation moment and then they’re as regular as the regular staff who’ve worked here for years.

At one point, I went into the communal room and another staff, one of my “favorites”, was there. She asked me what was up and I explained that I had two appts that originally the staff didn’t think I could handle in one day and now they added this orientation thing to it too. The temp worker was present too and I told him it wasn’t that I didn’t like him, but he hadn’t even spoken a word to me during his previous shifts here and now he was creeping up on me. He apparently had been instructed to do so. The other staff understood and I actually talked a little to the temp worker.

Unfortunately, when I read my daily log notes for the past week today, I saw there wasn’t a single word about how I’d talked to him eventually. Neither was there anything about how I’d accepted the other temp worker (who’d had her orientation moment with me last week) for my activity on Tuesday, nor that I showed the new student staff my clay yesterday on his first shift here. This is relevant because it signifies that they’re still only reporting my challenging behavior and not the things I do accomplish in spite of the stress it gives me.

If we were having coffee, I would once again end on a positive note by sharing some small pleasures of the week. First was the BBQ on Thursday. It was good. Next up is a visit to the next town’s market yesterday. My spouse was a little surprised that I didn’t buy olives, as I usually buy those when going to the market. I did buy candy. I also went to the supermarket to buy some ingredients for my smoothies. We also went to that town’s coffee shop run by disabled people and had the most delicious caramel latte.

Speaking of which, I’d tell you that I’ve been having a new interest lately: coffee brewing. I’d really like to be able to create my own coffees. Still need to look into all the necessary supplies, but it should be fun.

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

Hi everyone on this last Saturday of March. I’m joining #WeekendCoffeeShare today. It’s nearly 8PM as I write this, so no more coffee for me. However, a fellow client’s parents brought us cheese, sausage and maybe other little snacks to go with our soft drinks this evening. I’ll have apple and peach-flavored Dubbelfrisss as usual. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been mild most days with daytime temperatures around 15°C, though night-time temps have been around freezing. We had a little rain on Sunday I believe, but I think that was before I woke up. Honestly, I’m pretty sure nature could use some showers.

If we were having coffee, then I’d talk about my physical fitness routine. I am still going strong with my goal of a perfect month on my Apple Watch and, on Thursday, got in over 20K steps again.

If we were having coffee, then however I’d moan about my tremors. I’ve mentioned a couple of times that my right leg trembles horribly sometimes and, usually when it’s been happening, the rest of my body follows suit and starts twitching. Yesterday, it was really bad. My intellectual disability physician usually says it’s most likely influenced by stress, though both of us know that my medication (particularly my antipsychotic) could be causing it too.

With respect to my meds, I’ve often been reacting out of fear of becoming unmanageable and for this reason asking for a very slow taper. My physician has been constantly asking whether my life will become more difficult soon due to for instance more temp workers, because apparently that’d be a reason not to taper further for a while. Now I’ve decided that being manageable is not a reason to put my body through the effects of strong meds. Besides, yesterday I had an aggressive meltdown precisely because I couldn’t cope with the tremors anymore. Now thankfully on Monday my staff will contact the intellectual disability physician, my GP or both.

If we were having coffee, I’d also moan about my shoes. I’d worn one pair of orthopedic shoes for only a week last Thursday and they were already badly damaged. The physical therapist took a look at them and said she thought the orthopedic shoemaker might not have done the last repair properly. I’m not sure that’s the reason they get damaged so quickly. On Friday though, the physical therapist came by and took a video of my walking, which she is going to compare to a video she took about half a year ago. I’ll see her again next Friday and hope she’ll have some ideas.

If we were having coffee, I’d share that I’ve been having bad memories of my time in the mental hospital. Like I said above, the intellectual disability physician here constantly talks about the possibility of more temp workers as an excuse not to taper my medication. This was precisely why I was prescribed medication in the first place: I’d become severely irritable because of the large number of temp workers at the time and my psychologist was threatening me with seclusion if I continued to have meltdowns. Similarly, when on the locked ward, I was literally told I’d be locked up in the “quiet room” if I needed more care than they could provide. I realize rationally that this is institutional abuse, but I’ve internalized a lot of all the bullcrap institutions feed me.

If we were having coffee, I’d end on a somewhat positive note by sharing that the behavior specialist finally filled out the forms to get the Center for Consultation and Expertise involved on my case.

Tapering My Meds… in 2034?

Posted on by Astrid

Hi all! One of this week’s Writer’s Workshop prompts is to write a post based on the word “medications”. I will probably have another med review with the intellectual disability physician in a few weeks. The aim for me has always been to taper my medications. This will probably take until 2034 and this time my use of the year 2034 is only partially a joke. After all, when I said that “everything will be okay in 2034” and explained to the physician that I always say “2034” when I mean “never” (because of the fact that the book by this title is about World War III), the doctor didn’t understand the joke. She actually seriously said that I’ll be on the right med regimen by 2034.

Like I said, I’ll have another meeting with her to discuss tapering my meds in a few weeks I think. Although I’d really love to decrease my medication dosage sooner rather than later, I do realize that I’ve been struggling more than usual lately. I haven’t shared about this on the blog much, but over the past several weeks, I’ve had emotional outbursts almost every evening. Part of the reason is the fact that there were quite a few temp workers assigned to me. Thankfully, as of yesterday, it was agreed that the staff will no longer send unfamiliar temp workers to me. I am very happy about this.

However, I am also concerned that the temp workers might just be the reason my already irritable brain chose to act out. In other words, it could definitely have been the case that my latest med taper wasn’t all that sensible. For this reason, I have pretty much made up my mind that I will not take another step until January or so. That way, I’ll be able to give the new agreement about no unfamiliar temp workers a fair chance. All I can hope for is that, if I tell the physician I want a break, it won’t end up being an end to it all.

After all, I do still experience significant side effects from my medication, like what I think could be a movement side effect from my antipsychotic (significant tremors and twitches) and I don’t want this to end up being permanent. This is another reason I don’t want to seriously wait for 2034 to be off my antipsychotic. By 2034, I’ll be 48 and that’s too young for crippling movement disorders.