#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.

Physical Discomfort

Posted on by Astrid

I have been experiencing a lot of nausea lately and a bit of a decreased appetite. At first, I attributed the nausea to stress, then norovirus which was making its rounds here at the home. I was really sick with diarrhea and vomiting for only a few hours though, so it’s not even certain I had the virus.

If I have to be true to myself, I’ve been feeling a little unwell for a couple of weeks already. However, it’s really hard for me to tell when I even feel physically unwell and, if so, whether it’s “just” being a little off or it’s something I might need to see my GP for. For this reason, I usually keep going with physical discomfort for months. And even though alertness to my physical wellbeing is one of my care goals, my staff expect me to be able to signal to them when I’m having symptoms (and even when I do, it takes forever for them to take action).

Today, I did ask my staff to call the GP surgery tomorrow to inquire about my kidney function. It’s been decreased for at least a year and, even though I’ve had regular blood tests, I haven’t seen or been told of the results since the summer of 2022.

And guess what? Nausea and decreased appetite are a possible kidney disease symptom. So is itchiness, which I’ve had very badly for months. I don’t mind either symptom as much, in the sense that despite the decreased appetite I’m still eating well and I could continue putting cetomacrogol cream on my skin forever if the itch is nothing to worry about. But I want to make sure my kidney function hasn’t gone significantly further down.

And if it has – and honestly, even if it hasn’t -, I want a consultation with a psychiatrist to discuss tapering my psychiatric medications. I know, the ones that could cause kidney failure are the last ones I started – topiramate and pregabalin -, but I doubt either is very effective. Besides, I just don’t want to keep adding on to my med pile and, if my kidneys show further damage, I’ll need to go on meds for that too.

Let’s hope the staff don’t forget to actually call the GP tomorrow.

2022: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.

Ways in Which My Life Has Improved Over the Past Few Months

Posted on by Astrid

Lately, as I’ve been recovering from COVID and as the news of the war in Ukraine has been intensely scaring me, I’ve focused more than I would like to on how my life has seemed to have spiraled out of control. Staff changes at my care home also contribute to my feeling of insecurity. This combined leads me to feel that I am worse off than I was a few months ago and getting worse by the day. For this reason, a prompt that I came across in one of my journal writing books, is particularly compelling to me right now. It asks me to describe in what ways my life has improved over the past couple of months. Here goes.

1. I sleep better. I am pretty sure this isn’t entirely due to the lingering effects of COVID, though they do play a role. I am pretty sure the new medication, pregabalin (Lyrica), also helps. I feel a lot more rested when waking up, have fewer nightmares, etc.

2. I am less anxious. Though I still experience night-time anxiety, it has significantly decreased particularly over the past couple of weeks. I am pretty sure this is thanks to the pregabalin too.

3. I have been able to be more creative. I have truly discovered my artsy side over the past couple of months. I do still stay somewhat in my comfort zone, but am exploring ways to step outside of it just a little bit too.

4. I have started on a healthier food plan. This is hard, but it is more doable than I initially expected it’d be. Though I let things go a little when I had COVID, I only gained like 0.2kg from before I got sick. Overall, I’m not disappointed.

5. I have developed some more trust in some of my staff. This is still fragile and it is even more so with the staff changes. For this reason, we have let go of the word “trust” for the most part when referring to my relation to the staff and called it “acceptance”. I feel proud of myself for admitting that I am beginning to trust a couple of staff members rather than just accept them.

Though some of these things seem to be outside of my control, they really aren’t. I mean, I have to thank the pregabalin for my decreased anxiety, but I also do practise relatively good self-care by sleeping with my music pillow when stressed, for instance. I think, by the way, that it helps to hold the view that, though my life isn’t in my hands, my choices are within my control.

How has your life improved over the past couple of months?

#WeekendCoffeeShare (February 19, 2022)

Posted on by Astrid

Hi everyone on this gloomy Saturday evening. I’m joining #WeekendCoffeeShare today. I’m right between my dinner and my evening coffee and I cannot offer you a drink other than water right now, as my staff is busy and I don’t want to leave my room. I’ll get to that bit later. So, can I get you a drink of water? Otherwise you’ll have to wait until my staff returns. Anyway, let’s have a chat.

If we were having coffee (or water, in this case), I’d share that we’re quarantining right now, as four or five of my fellow clients are positive for COVID. Four are confirmed and the fifth one can’t be tested but is treated as having COVID too. I took a lateral flow test right after dinner this evening and so far I’m still negative, as are the four other clients supported by the same staff as me outside of my one-on-one hours.

This is the reason the staff are busy, with the staff who care for the COVID-positive clients having to wear PPE and the other staff having to remain out of these clients’ way. It is all rather chaotic.

If we were having coffee, I’d share some of my new clay creations with you too. Like I think I said yesterday, I finally created a cactus on Monday evening.

Polymer Clay Cactus

Then on Wednesday, I created my second-ever polymer clay cane. This one I did using a heart-shaped cutter for the image. I managed to do the reducing all by myself! Then I had my staff cut it into slices, which we then made into beads.

I also created several possible charms to go with these beads. One is a heart which I do kind of like. The other was a unicorn, but I threw that one away. I now only need to make more beads, because, even though I have more than just the four beads shown in the picture above, I don’t have enough for a necklace.

If we were having coffee, I’d share that, this afternoon, I have been experimenting with photo editing and meme making again. I didn’t have any success, of course. I mean, I found a photo editing app called Snapseed, which is relatively accessible with VoiceOver, but the one thing I wanted to do, ie. add text to an image, was not. That is, I couldn’t for the life of me figure out how to enter the text I wanted to add onto the image.

The result of all my experimenting is that now I have eight apps in my Photography folder on my iPhone rather than the four I used to have. And those four already seemed excessive, being that, besides the camera and default photos app, I only use one out of the two image recognition apps I have. Oh well.

If we were having coffee, I’d share about my nurse practitioner’s appointment on Thursday. I am so thankful we were still allowed to leave the home back then, because the appt was really productive. With respect to my new medication, the pregabalin, my nurse practitioner recommended I wait and see another two weeks before concluding it’s ineffective for my anxiety. We discussed my anxiety in a little more depth and also for the first time in a long while went into my diagnosis. He actually said he believes my diagnosis is DID (dissociative identity disorder) or at least some variation of it (ie. other specified dissociative disorder). I quickly talked over it saying it doesn’t really matter, as I know firstly he can’t diagnose me (but then again the psychiatrist can) and secondly I still haven’t had the extensive assessment required for a DID diagnosis in most places here in the Netherlands. That being said, it felt so good to be validated like this! My nurse practitioner also finally will make room for us to discuss my flashbacks at a later appt. He said the reason he didn’t go into it right then was the limited time left in our appt, but he’d definitely like to discuss it with me. That feels kind of weird, but in a good way.

If we were having coffee, lastly I’d share that I’m so glad the storms are finally over. Last Wednesday night, I hardly slept at all due to the high winds. Thankfully, last night and the night before that were better. My husband’s and my house did suffer some damage to the roof though. Hopefully insurance will be able to cover the cost of getting it repaired.

How have you been?

Gratitude List (February 12, 2022) #TToT

Posted on by Astrid

Hi again all. I want to post a gratitude list again. Actually, I sort of did one yesterday too by sharing the material things I’d loved. Then though, Ten Things of Thankful was not yet online (or rather, the wrong linky was). Since I like to link my posts up there, I waited till today to write my actual gratitude list. Oh wait, that makes me look spammy, I guess, but oh well. Let me share some things other than chalk pastels and tuna I’ve been grateful for.

1. Seeing my husband. I am in Lobith right now and am so grateful to be with my husband again. I couldn’t see him last week due to the storm and haven’t been in Lobith since Christmas, so it’s especially good.

2. Pizza. Oh, that’s a material thing, but who cares? We ordered Domino’s this evening and, despite the fact that their menu has shifted to include more vegan and gluten-free options and fewer regular pizzas, my pizza (spicy chicken meat lover’s with extra chicken) was delicious! I initially typed a long rant about how Domino’s has gone too far with their “healthy” trendiness by doing the vegan and GF (which I doubt is genuinely 100% GF) thing at the expense of meat lovers, but I deleted it. I’m just grateful they still had at least something spiced with chicken.

3. My husban’ds Valentine’s Day present for me. I got 2 sets of polymer clay: one with 12 25g blocks of Fimo soft and the other with 6 42g blocks Fimo kids. I haven’t used Fimo kids before, so have to determine whether it’s not too soft for my liking.

4. Decent sleep most nights. Either the pregabalin is starting to work (although I haven’t noticed an improvement in my anxiety level yet) or I am for another reason better able to sleep. I had only one bad night this past week.

5. Eggs. Until a few months ago, a former staff from my care home and her husband would give us a tray of eggs from their own chickens each week. Sadly, the husband died and the chickens had to leave their house, which meant no more eggs for us. However, usually, we now order eggs from the supermarket. I recently found out we now even have an electric, talking egg boiler. Well, I had a boiled egg on my bread this morning.

6. Sunshine. It’s cold outside. Okay, I say that all the time, but the temperatures dropped to below freezing point last night. However, it’s also been quite sunny out. I love looking out of my window to see the sunshine.

7. Longer daylight. This may be related to the last one, but not necessarily so. I love the fact that the days are getting longer. As my husband said, we’re heading towards summer! 🤣

8. Weight loss. I already mentioned this afternoon that I crossed the line from obese to just overweight this week. My dietitian says the Dutch Food Center doesn’t even say you really need to lose weight if you’re in this category.

9. My shoes having returned from the orthopedic shoemaker. Not the orthopedic footwear, mind you. That’s the never-ending story if you ask me. However, for now, I have useable shoes again.

10. My PC. I am so grateful my PC still works. My iPhone, after all, more or less stopped cooperating with my Braille display altogether with the latest iOS upgrade, which should actually have fixed the very problem it now seems to have made worse. Thankfully though, I have a functioning PC with the latest JAWS (my screen reader), on which I can do most things I want to do. I just tried accessing the WordPress.com app to check my notifications, but for some reason, that won’t work still. I’m just grateful I can write E-mails and blog posts on my PC.

What are you grateful for?

#WeekendCoffeeShare (February 6, 2022)

Posted on by Astrid

Hi everyone on this rainy, windy Sunday afternoon. I’m really regretting having started the landing page for #Write28Days rather than just having linked up some archive of the tag or something, as today I’m already a day behind and it looks weird to add posts to my landing page again now. Okay, maybe that’s just my autistic brain acting up. Anyway, this afternoon I’m joining #WeekendCoffeeShare. If I feel so inclined, I’m going to add another post on my #Write28Days topic tonight, but again I won’t promise I will.

I’ve just had my afternoon coffee. I’m supposed to have a serving of fruit with that. Since the supermarket delivered 5kg of pears yesterday, the staff badly wanted me to eat a pear. Thing is, I’m not a fan. Besides, it’s not my problem either the supermarket got the order wrong or my staff mistyped it in the system. They should have been five pears, not 5kg. Anyway, I chose a banana, but if you all would like a pear (or two) with your coffee, tea or soft drink, we’ve got loads! Let’s have a drink and let’s catch up.

If we were having coffee, I’d share some more details than I did yesterday about my psychiatrist’s appointment on Tuesday. First, we decided to decrease my topiramate (Topamax) dose again to 25mg morning and 25mg evening, because the other 25mg I was taking in the evening was only giving me side effects and no positive effects. We also discussed my fear of letting go of my sense of control particularly in the evening and at night when getting ready for sleep. This means that traditional anti-anxiety medications or sleeping pills are pretty much out of the question for me, since they’d cause me to get drowsy and hence by definition lose a bit of control. Then, I’d fight the effect of those pills and get even more anxious. The psychiatrist instead prescribed me pregabalin (Lyrica). This, like topiramate, is originally an anticonvulsant, but it also works for anxiety. I would be starting with one 75mg tablet on Saturday early evening (around 5PM, when we have dinner here).

The psychiatrist also recommended that my nurse practitioner talk to the mental health agency’s psychologist to see if she can offer me ideas for coping with the anxiety. My nurse practitioner is also going to discuss this with my care facility’s behavior specialist.

If we were having coffee, I’d tell you that, indeed, I started on my decreased topiramate dosage on Tuesday right away. I slept great my first night and originally thought maybe this was the solution after all. It wasn’t to be though, as the next day I was right back to being sleepless and anxious.

Then yesterday I was anxiously awaiting starting my pregabalin at 5PM only to find out first that the staff thought it was put in the med system for 8PM. Then, once they took a closer look, they found out the pharmacy had put it in there for 8AM and the morning staff had indeed given it to me. I’d apparently taken it without noticing. No side effects so far, but this really is quite stupid, as there’s a reason I should be taking it early in the evening. I E-mailed my nurse practitioner, who will hopefully get back to me tomorrow. By the way, I also noticed I got a capsule rather than a tablet. The dosage is right, thankfully.

If we were having coffee, I would share that, yesterday, I decided to order soft pastels to use with my polymer clay. They should be getting here any moment, as thanks to my Select membership with Bol.com, I can have stuff delivered for free any day of the week.

If we were having coffee, I’d tell you that I asked about sealing my polymer clay creations if I’d used acrylic paint or soft pastels on them. I particularly commented that I don’t want to use resin for this, as it’s rather risky with the UV or fumes of the two-component epoxy. Thankfully, I was reassured that sealing isn’t really necessary and, if it is, I can use other products than resin, such as floorboard protector or liquid clay.

If we were having coffee, lastly I’d share that, due to the high winds, my husband didn’t visit today. He didn’t want to risk driving on the highway in his small Daihatsu Cuore, particularly near Lobith, where they’d issued a weather warning. Better luck next week!

How have you been?