Gratitude List (April 29, 2022) #TToT

Hi everyone. I am feeling a bit meh today. I don’t really feel like writing a gratitude list, but I do feel like writing something and I can’t think of anything else to write. For both of these reasons – to have something to write and to cheer myself up -, I am going to try to write a thankful list anyway. As usual, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for pizza today. Yes, again. Another staff is leaving and she wanted to give us pizza or pasta from the local Italian restaurant as a goodbye present.

2. I am grateful I was able to give the staff who’s leaving her present. I didn’t end up making something for her myself and initially wanted to stay in my room while the other staff gave the presents to this staff, but I am grateful I decided to go and give her one of the gifts the other staff had bought on behalf of us clients.

3. I am grateful for quiet time to write. It’s now nearly 9PM and between 6PM and 7PM, a guy from the home next door was blasting his music on top volume. Even with noise canceling headphones (unfortunately still the ones I have on loan) on, I still could hear the music clearly. I’m so glad it’s quieted down now.

4. I am grateful for a good phone talk with my mother-in-law on Wednesday. I was able to tell her I’m going to discuss entering the process of finding another care home. To my surprise and gratitude, she fully supports me.

5. I am grateful for a nice phone call with my mother on her birthday yesterday. I obviously didn’t tell her I’ll be looking for another care home. We made some smalltalk and it was okay.

6. I am grateful for sleep. Despite feeling quite on edge lately due to a lot of issues, I am sleeping relatively well.

7. I am grateful to have been able to go to the day center for a considerable time twice this week.

8. I am grateful for funny stories to listen to on YouTube. There is a Dutch children’s book author called Jacques Vriens who read his own stories aloud on YouTube. There are also English-language YouTube channels for children’s stories, which I also love, but Jacques Vriens is a childhood favorite of mine.

9. I am grateful I was able to go onto the large trampoline on Wednesday. It was great fun!

10. I am grateful to be relatively financially secure. I won’t go into detail here, but I am just happy my husband and I can handle a little financial setback.

What are you grateful for?

Sunday Ramble: Habits and Routines

Hello all on this beautiful Easter Sunday! Today, I’m joining the Sunday Ramble, for which the topic this week is habits and routines. Here are Amy’s questions.

1. Do you have a daily routine that you are used to, or do you just go with the flow of the new day?
I usually get up and go to bed around the same time. I also eat breakfast, lunch and dinner at the same time most days. However, with respect to the activities I do inbetween, I usually go with the flow. After all, I just don’t always fancy doing the same things each day, don’t have the same level of energy, etc.

2. Do you do anything in your life habitually that you wish you could stop?
I guess I have quite a few bad habits. I’m learning not to overeat, but I still eat much faster than I’d like.

I also bite my nails. I tried to stop when I first started working with polymer clay, thinking that I could ingest polymer clay that got stuck under my nails by biting my nails. Unfortunately, I couldn’t stop.

I also twirl my hair, which my autism diagnosing psychologist once told me was a “serious social handicap”. Well, I was just beginning to recover from a psychiatric crisis at the time, so I couldn’t care less.

3. If habit was the acronym H.A.B.I.T, what would it be short for?
Helpful Actions Bring Infinite Thankfulness.
That’s a way of turning HABIT into something good!

4. Are we born with our bad habits? Or do we acquire them from the environment surrounding us?
I think, like most of our traits, it’s a combination of both. We are born with a predisposition to, for example, nervousness, addiction, etc. However, the exact nature of our bad habits and whether they make it into actual compulsions/addictions/etc. or not, is largely determined by our environment.

5. Are you a night owl, early bird, or something else when it comes to sleeping routines?
I am naturally more of a night owl, but I also need a lot of sleep. I’ve gotten used to going to bed at around 10:30PM and getting up at 8:30AM. That probably makes me something in between.

Poem: Take Shelter

It’s safe here,
guarded.
You can cuddle up.

It’s cozy here,
comfortable.
You can be secure.

Nightie-night.
Close your eyes.
You can rest now.

I hope you sleep well,
taking shelter
in the abyss.


This poem was inspired by one of the prompts in Reena’s Xploration Challenge #226. This week, Reena gives us a series of book title suggestions as inspirations for our post. I decided to use the first one as inspiration for this poem. I am also joining dVerse’s OLN, as well as Friday Writings #22. I didn’t quite understand the optional prompt for this week and the part about reusing words to craft a piece that’s of higher quality than the original, feels a bit, well, paradoxical to me. After all, I’m pretty sure I screwed up the original intent of that book title generator quite badly with this poem, but oh well.

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

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?

Allowed to Rest #SoCS

SoCS Badge 2019-2020

Like I’ve said multiple times over the past week, I’m self-isolating with COVID right now. Today is day four of my five-day mandatory quarantine. I have taken each day as an opportunity to stay in pajamas, because I didn’t feel like getting dressed now that I wasn’t allowed to leave my room anyway. That being said, taking my much-needed rest, has been more of a struggle.

Both on Wednesday and this morning, I was up in the middle of the night really, or early morning, depending on your perspective. On Wednesday, I was up by 3AM and couldn’t sleep. Today, I could stay in bed till 4AM. The other nights, I managed to sleep for at least ten hours, sometimes twelve.

It isn’t that I’m not tired, really. Or maybe I’m not, but it does feel kind of like I am. However, my brain won’t shut off. It’s like my body is exhausted and in need of rest, but my mind continues to tell it to carry on. It isn’t even my brain. Well, you know, my mind is in my brain too, but I mean, it isn’t that I’m not cognitively tired too. But I keep beating myself up over it.

Then again, if I can allow myself not to get dressed, why can’t I allow myself to lie in bed and sleep this whole thing off? I can’t force myself to sleep, of course, but I can try to get some rest. Instead, I’m writing this mindless blog post. Thanks for reading! I’m allowed to rest now. Or read what the rest of you have to say.

This post was written for Stream of Consciousness Saturday, For which the prompt today is “Rest”. I just realized that, in my second-last sentence, “you” is a better fit than “I”, but editing is against the rules. Oh well.

Gratitude List (February 12, 2022) #TToT

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)

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?

Gratitude List (February 5, 2022) #TToT

Hi everyone on this Saturday evening. I’m doing a gratitude list again. I don’t promise I’ll have time for another post for #Write28Days, but I’ll try. As usual, with this post, I am joining in with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for a good psychiatrist’s appt on Tuesday. I went to the mental health outpatient clinic to meet my nurse practitioner face-to-face and we talked to the psychiatrist via the eHealth system, as she was working from home. I got a new medication, which should hopefully help reduce my anxiety.

2. I am grateful I got a license code for the latest JAWS, my screen reader. I don’t know how the screen reader company managed to arrange for it so quickly, as I haven’t seen the bill in my health insurance app yet, but oh well.

3. I am grateful WordPress still provides the classic editor as an option. The latest JAWS does work with the block editor, so I tried that for a few days, but I kept accidentally deleting random paragraph blocks and overall, I consider it still quite a cumbersome editor.

4. I am grateful I have been able to be crafty again. My flower fairy or whatever it was, didn’t turn out as good as I’d liked. Besides, in the tutorial, they did the body in light flesh color, same as the head, so it looks like the thingy is naked. For this reason, I’m not going to show it on my blog in case I offend anyone.

I did create a Disney princess figurine out of polymer clay on Thursday. Most staff immediately guessed correctly who it was when looking at her: Elsa from Frozen. Since it’s quite small (only about 3cm high), I wasn’t able to refine her facial features or whatever. That’s okay though.

Polymer Clay Elsa from Frozen

5. I am grateful for a trip to Action, a budget store, in a town about a 20-minute drive away on Friday. We do have an Action here in Raalte too, but the one in that town was larger or so my staff said. I bought acrylic paint to paint details like eyes on my polymer clay creations, thin paintbrushes to use with the acrylic paint or with glitters or Fimo liquid, a utility knife and some other things. I was looking for soft pastels too, since the site said they sell them, but apparently this particular store didn’t have them in stock.

6. I am grateful for decent sleep most nights this week. I slept really poorly on Wednesday, but the other nights, I slept okay.

7. I am grateful to have been accepted into some lovely Christian E-mail groups. I am grateful for the kind people on there and for the fact that they don’t judge me for not living with my husband, which I know isn’t a traditional Christian marriage setup.

8. I am grateful I have been able to blog consistently for a few days now. I am not sure how long I’ll be able to keep it up, but we’ll just have to see.

9. I am grateful I am able to make relatively healthy food choices on days even when I did have a “bad” food for lunch for example. I mean, I don’t do “cheat days” where I ditch the food plan altogether and that’s good. Every healthy food choice I make contributes to my ultimate goal of a healthier lifestyle.

10. I am grateful for no side effects from the new medication so far. I was supposed to get it at 5PM this evening, but due to some mistake the pharmacy made, it got in the system for 8AM. The staff gave it to me this morning and I took it without concern. I am so glad we found out before the evening staff gave me an extra dose.

What are you grateful for?

Most Relaxed When I Am Slightly Distressed?

I had a meeting with my nurse practitioner today to discuss my topiramate. Like I mentioned last Sunday, the increased dosage isn’t doing what it should. I was experiencing slight tingling in my hands and feet and, more annoyingly, increased drowsiness. Moreover, the medication wasn’t working for my hypervigilance; if anything, it was making it worse. The slight tingling in my hands and feet has decreased to the point of almost disappearing over the past few days. The drowsiness has not. Neither has the hypervigilance.

A theory I came up with recently, in a conversation with the care facility’s behavior specialist, is that my ideal level of alertness is really slight distress. In terms of the care facility’s signaling plan, phase 1 rather than 0 is really when I’m most relaxed. The reason, in fact, is that relaxation scares the crap out of me because it includes a sense of loss of control.

I am reminded in this respect of my last surgery as a child, when I was eight-years-old. I clearly remember going under the anesthesia – I had refused a tranquilizer to calm me beforehand – and I also vividly remember keeping on talking, even when my speech became slurred, up till the moment the anesthetic knocked me out. I was deathly afraid of letting go of my control.

I am also reminded of my fear of going to sleep, which goes back to early childhood. It may in part be related to my trauma-related symptoms, because of course my traumas started as early as infancy. However, I wonder whether this is also somehow related to the fear of losing control.

I once heard that benzodiazepine tranquilizers are no good for people with borderline personality disorder, precisely because the anti-anxiety effect causes aggression in them. I am not sure whether my current diagnosis includes BPD or not, but something similar might be going on with me. I don’t generally become aggressive when I’m under the influence of tranquilizers. However, as my nurse practitioner said, this thing does show that alertness and distress are not some linear thing on a scale from -2 to 3 (on my care facility’s signaling plan) in real life.

The bottom line is that we don’t yet know what to do about my topiramate. We’ve so far decided to wait another week or two to see if, since the drowsiness should decrease with time, this will cause the positive effects to start becoming noticeable. If not, we may go back to my old dosage, but I’m not yet sure what to do about my PRN quetiapine then. After all, we upped my topiramate in hopes that I could do without quetiapine then. Right now, I’ve felt like I would’ve needed a PRN medication quite regularly, but I’m trying to suck it up for now. That’s pretty hard. I’ve had a few almost-sleepless nights over the past week and am pretty anxious most evenings. But yeah, I’m muddling through. Thankfully, my nurse practitioner did give me an extra appointment next week to check in on the meds.

Moaning About My Meds

It’s 8:30PM and I’m probably going to bed before 10PM tonight. Since upping my topiramate (Topamax) a week ago, I’ve been more sleepy earlier at night and consequently going to bed sometimes by as early as 9PM or even earlier. Unfortunately, the quality of my sleep doesn’t seem to be better.

Last night, I had a horrible dream in which my staff were chattering among themselves and all the while I was trying to get their attention because I was anxious, but to no avail. That’s how I’ve been feeling ever since upping my medication: I am still anxious, but too drowsy to react to it. In fact, I’m not even 100% sure my experience last night was completely in my dreams, because, when I awoke, I couldn’t get to the level of alertness necessary to press the call button.

I don’t really mind the drowsiness as much. Or the tingling in my fingers and toes, which I’ve started to experience since increasing my topiramate dosage too. But the medication does have to work for my hypervigilance. And hypervigilance is not just an outer reactivity, or is it?

My assigned home staff did say yesterday that she judges from the staff’s reporting that I’m calmer, because I come calling out for help less at the times I’m not having my one-on-one. That comment triggered me intensely, because it made me think I’m supposed to take my topiramate so that I don’t ask for help outside of my assigned support hours. I’m reminded of my psychiatrist’s comment about meds as a “chemical nurse” again, something I now don’t see as quite as validating a statement.

This evening, I did E-mail my nurse practitioner my concerns. Of course, the topiramate’s positive effects might still need time to kick in, but if they don’t, I’d rather go back to my old dose. Which, of course, means we will need to find me a different PRN medication or something for when I go into crisis. It also means we’ll need to postpone my aripiprazole (Abilify) taper. Honestly though, I don’t really care about those.