Share Your World (May 13, 2024)

Hi everyone. Today I’m joining Share Your World. It’s a lovely blog challenge on WordPress where bloggers answer four questions, with an optional gratitude section at the end. Here goes.

1. Have you ever lied about your age?
Not really purposefully lied, but my insiders/alters/parts (I most likely have a dissociative disorder) have different ages from my body age and they’ve sometimes been rather in your face with them, even though we rarely experience full-on amnesia and, as a result, usually know our body’s legal age on some level.

2. Is there any time in your life you would like to relive?
The year 2021 and the first half of 2022. Those were, all things considered, the happiest times of my life. I wish I could go back in time and make one different choice then too, which my regular readers will know: I’d travel back to April of 2022 and undo my decision to ask to move out of the care facility in Raalte.

3. Do you own any antiques?
Not at all.

4. Would you like to know some of the history of places you’ve visited?
Not sure. I did visit the institution museum a few weeks back and that was fun, but I don’t really care for historic buildings or anything.

#WeekendCoffeeShare (December 16, 2023)

Hi everyone. It’s been a while since I last joined in with Natalie’s #WeekendCoffeeShare, so here goes. I already had my last coffee for the day and had my weekend soft drink (yay, we still got Dubbelfrisss!) too. I bet you could still get a cup of tea though. That is, I’ve had some later in the evening here. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that I bought a new iPhone last week. I bought the SE 3rd gen. I had originally intended on buying the 15, but that costs like €1000 and I would probably get annoyed with the lack of touchID and a home button. Besides, it’d be a greater risk of being stolen. Still, to be honest, I am slightly disappointed with the battery life of the one I got and had wanted the 15 for its great camera features. Of course, I myself can’t take good pictures at all, but I would’ve loved to have a device that can make them. All that being said, I’m pretty sure the pros of the one I got outweigh the cons.

My spouse bought me a lilac case for it. It’s a little on the thick and rigid side, honestly, so I might want to replace it eventually. I still have my old phone’s case, which the new one fits into too, but I don’t feel like I could in my right mind switch them up. That would be unfair to my spouse.

If we were having coffee, I’d ttell you that I joined the Christmas lights tour in my town yesterday. Originally, the staff hadn’t thought of inviting me and, since it wouldn’t end till 8PM and my one-on-one leaves at 7:30, they were saying I could walk an alternative route with my one-on-one. I was disappointed and tried to say I could walk independently alongside the others just fine and didn’t need my one-on-one. The way I had imagined it the staff would be pushing a wheelchair that I’d hold onto too. As it turned out, the wheelchair users were pushed by volunteers and one staff would need to watch the entire group of ambulatory clients, including me, if I didn’t get my one-on-one. Thankfully though, my assigned staff, who did my one-on-one till 7:30, offered to stay half an hour longer to be able to allow me to participate too. Normally, I’d have to pay like €30 for those 30 minutes of extra one-on-one – not that staff actually earn €60/hour, so don’t ask me why -, but he said he’d find another way.

Along the tour, there were various points where people had decorated their houses or front yards with Christmas lights and some had left Christmas lights along the pavement. We also came by my former support coordinator’s house. You know, the one from the intensive support home, the woman one who was my original support coordinator there. She no longer works for my care agency. Anyway, we were actually instructed to come into her garden, where she was toasting marshmallows and handing out hot cocoa. I initially didn’t recognize her even though I knew she lives in this town and the instructions mentioned her first name. She said, “think [intensive support home],” and then I realized who she was. She asked me how I was doing at my current home (she knew where I’d moved). I said very cheerily that I was doing well and liked it here. I also told her that I found out about the move through my current assigned staff E-mailing my mother-in-law wanting to know my preference for the paint on my wall. “Oh, that wasn’t fun,” she said. “In fact, that was fun,” I replied.

At the end of the tour, we got fries. That was so cool!

If we were having coffee, lastly I’d report that I finally disclosed about my possible dissociative symptoms to one of my staff yesterday. She said she’d seen some of my alters, contrary to what my assigned staff says. Maybe what he’s looking for is me calling myself by different names, which I don’t do unless I really trust someone. I’m trying to maintain the status quo as to whether I/we actually have DID or not, in the sense that it’d be much easier for treatment purposes if we didn’t but then again the parts, whatever you’d call them, are there whether I want it or not.

Act Your Age, Astrid?!

Hi everyone. Today’s topic for Sunday Poser is the idea of acting our age. Society expects us to act a certain way depending on our age – not just behave quite responsibly past our mid-twenties or so, but also to wear certain clothes, listen to certain music, enjoy certain activities, etc. depending on our age. Do we generally conform to that expectation? A quick read through the comments on Sadje’s original post gave me the impression that, no, we don’t. And I personally certainly don’t.

With respect to the responsible behavior part, I have to admit, unlike the other participants, that I’m very much a child – no, a toddler – at heart. I still have significant temper outbursts, for instance. In fact, on my thirtieth birthday, I had an intense outburst and was adamant that I could no longer have those in my thirties. Well, my brain wouldn’t listen. It’s said that my emotional developmental level is comparable in many ways to that of an infant or young toddler.

In other ways, I’m still a child at heart too. I love unicorns, going on the swings at the institution playground and stuffed animals. I even talk to my stuffed animals at times.

Then in other areas, I do act my age or even older. I’m not keen on using my phone when doing another activity and get annoyed when my staff get constantly distracted by text messages. I don’t really do social media except for Facebook (which probably makes me appear really old). It isn’t that I haven’t tried, but I was rather late to the party with most platforms.

Of course, the fact that I use the singular pronoun “I” here, is a bit misguided too, since we’re a plural system and there are parts of all ages. This is probably one of the reasons that I can talk to my stuffed animals happily one moment, have a temper tantrum the next and be involved in an “old-fashioned” hobby later. I do sometimes wonder whether my parts are genuine alters or whether something like internal family systems could help them too. Then again, I’m not in therapy, IFS or otherwise, anyway.

Reading Wrap-Up (August 22, 2022) #IMWAYR

Hi everyone. I’ve been doing a lot of reading over the past week, so I thought I’d share a reading wrap-up once again. As usual, I’m joining It’s Monday! What Are You Reading? (#IMWAYR). Here goes.

What I’m Currently Reading

After I finished my last book on Saturday, I was thinking of starting a memoir. After looking through Bookshare’s biography and memoir category for a bit and reading the summaries of several books, I finally settled on All My Friends Are Invisible by Jonathan Joly. This is a memoir about the author’s life growing up surrounded by imaginary friends. I’m pretty sure that, further yet, the author could be diagnosed with dissociative identity disorder, but so far this term hasn’t been mentioned.

Other than that, I picked up My Heart and Other Black holes by Jasmine Warga again. I’m not sure why I even want to finish it, other than to prove to myself that I can finish a book that doesn’t deserve at least a four-star rating. It’s so predictable. Maybe I’m hoping for some intriguing plot twist, but so far at 62%, no such luck.

What I Recently Finished Reading

I finished two books in the past week. One is Six Weeks to Live by Catherine McKenzie, which I reviewed on Tuesday. The other is a winter special in the Unicorn Magic series by Daisy Meadows called Snowstar and the Big Freeze. This chapter book was the perfect antidote to the hot weather. Or something like that. I honestly don’t know why I picked it in the middle of August, but I did and it was good.

What I Think I’ll Read Next

I once again have no idea. I’m a true mood reader, so whenever I finish a book, I grab whatever strikes my fancy next. That’s how I got to pick the Jonathan Joly memoir too. I mean, I literally hadn’t heard of it minutes before I started reading it. So yeah, I might read another chapter book on magical creatures, since I have several downloaded off Bookshare. However, I may also be in the mood for another thriller. Who knows? I currently don’t.

What have you been reading recently?

#WeekendCoffeeShare (June 4, 2022)

Hi everyone on this warm but windy Saturday afternoon. It’s been a while since I joined #WeekendCoffeeShare, so I thought I’d participate once again. I’ve just had my afternoon coffee, but the other clients are still having theirs, so grab a cuppa if you want. I also have a delicious loose-leaf herbal tea that I swapped with my assigned staff for the lemon and mint flavored green tea that came in a box I’d acquired back in February when I had COVID. After all, back then the staff had taken the entire box to my room and only then realized that because of the risk of contamination, she couldn’t take it back to the kitchen. It contained four varieties of green tea: plain, lemon, orange and mint. I like plain and sometimes orange only, so now that I trust the box isn’t laden with viruses anymore, I gave the other two varieties to my staff. Anyway, the herbal tea contains cinnamon, lavender and I don’t know what else, but it’s truly lovely. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week was rather intense emotionally. On Monday, we welcomed a new resident to my care home. She’s quiet and doesn’t seem to need a lot of care, but the fact that she can walk independently and yet does have a profound intellectual disability, does create some of its own risks.

The door to the home now needs to be locked for her safety. She can’t work keys, so the key remains in the lock during the day for me to open it. (At night, it’s been out for years already for my safety.) This does create some inner turmoil in me, both because of the lack of clarity (either the door is locked or it is not, in my mind) and because of my feelings about the presumption of competence for me. I mean, I am an elopement risk too and some recent events in which I’ve been quite a possible danger to myself while running away, do make me feel weird. On the other hand, I really don’t want to go back to my time on the locked psych unit.

If we were having coffee, I would also share that, on Wednesday, my assigned home staff captured one of my child alters on video while playing with one of the new resident’s sensory toys. She later asked my permission to forward the video to the other staff and the behavior specialist. I at first said yes, then felt a little anxious but eventually decided to give my permission after all.

If we were having coffee, I’d tell you that I did finish all the presents for my sister and nieces on time for my visit to the family tomorrow. Besides the earrings I created for my sister and the mobile for little Wolke (that’s the baby’s name), I created a polymer clay bear for Janneke, my older niece.

Deciding when exactly we wanted to visit, was a bit of a hassle, since I’d forgotten my sister and her children of course need to sleep during the afternoon and I had more or less filled in for my husband that a morning visit wouldn’t be possible because of the long drive. Finally though, we agreed that we’d be at my sister’s by 11AM tomorrow and have lunch there. My husband insisted on picking me up here in Raalte tomorrow. Now that I think of it, I realize that it makes perfect sense, since he, unlike me, is a morning person. Oh well.

If we were having coffee, I would share that I went clothes shopping this morning with my staff. I bought three pants and two shirts and immediately wanted to put most of my old pants in a bag for the charity shop, because they’re way too wide. I didn’t in the end though, because I want to give it some more thought.

If we were having coffee, lastly I’d report that I’m now under 69kg, yay! I have now lost exactly 3kg since starting my healthier living journey back in January. Of course, that’s not much, but it’s better to go slow and keep losing than to go fast and then gain all the weight back because you’re tired of the healthy lifestyle after a while.

How have you been?

#WeekendCoffeeShare (April 24, 2022)

Hi everyone on this last Sunday afternoon of April. Can you believe that we’ll be in May this time next week already? I certainly can’t. The weather’s okay: sunny and about 16°C. I can’t wait for higher temperatures though. Anyway, I’m joining #WeekendCoffeeShare today. I haven’t had my afternoon coffee yet, but am likely going to take a break while writing this post to have it. You can have a cup as well. The staff are also trying to get me to try some type of drink that sounds much like what Americans call Kool-Aid: a powdered substance (sugar-free or so I’m told) that you add to cold water and that then creates the flavor of juice. I’m pretty sure I’d prefer plain water though. Anyway, we have this stuff in the apple-flavored variety, so if you’d like a drink of that, get yourself one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week, I’ve been experiencing quite the rollercoaster ride of emotions. Due to a number of triggers, I got to doubt once again whether I want to stay in my current care home forever and, on Thursday, I more or less decided that I at least want to discuss the possibility of looking for another place. I have no idea whether a voluntary move is even possible and it’s certainly not something I’m looking to decide on quickly. My assigned home staff E-mailed the behavior specialist and manager to see if they can discuss the possibilities and process with me.

If we were having coffee, I’d share that I also experienced quite a bit of emotional dysregulation recently. I am having some major flashbacks and identity confusion. It looks like a new factive alter (an alter based on a real, outside person) may have formed recently.

If we were having coffee, I’d tell you that tomorrow, I’ll finally be discussing lowering my antipsychotic dosage with my nurse practitioner. I’ll most likely take the first step sometime in early May. Even though I’m not feeling at my best right now, I want to move forward with it.

If we were having coffee, I would share that I did enjoy doing some polymer clay work recently. Mostly, I just mixed colors. Like I said before, last week, I got the Fimo Professional true colors six-pack, which comes with a mixing chart, from the day center. I love it! My mother has her birthday on Thursday and I’m fully intending on making her a tulip out of polymer clay with all colors I mixed myself.

If we were having coffee, lastly I’d share that I went to Lobith yesterday. It was good being with my husband once again. We got Domino’s pizza and had orange tompouces (a Dutch-specific pastry) in honor of King’s Day on Wednesday. This morning, my husband went out to the local bakery to buy us croissants. Yum!

How have you been?

#WeekendCoffeeShare (February 19, 2022)

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?

Benzos As a “Bandaid” for Serious Mental Illness: My Experiences

Earlier today, Ashley of Mental Health @ Home wrote an interesting article about the role of benzodiazepines in mental health treatment. While benzos can be useful as short-term treatment or PRN medication for panic disorder, generalized anxiety disorder, social anxiety or insomnia, they are often used as a go-to “bandaid” med for all kinds of mental health conditions. And by “bandaid”, I don’t just mean short-term.

The first benzodiazepine I was prescribed, was the sleeping pill temazepam (Restoril) by my GP in 2006. I was suffering with significant insomnia, but really I was suffering with what I now know is a combination of the onset of autistic burnout and my dissociative shell cracking, if that makes sense. I was given ten pills to use over the course of a month at least. I took six weeks to use them up and refused to get a refill even though my staff at the independence training home nagged me about it.

Then, once in the psychiatric hospital a year later, I used a number of different benzos, one after the other, mostly for sleep too. I however also got put on oxazepam (Serax) as a PRN medication for my agitation. Whenever I took it, I’d become hazy, fall asleep for an hour or so and wake up just as agitated as I was before or more so.

At the time though, I was seen as just autistic if that at all. More so, I was seen as a manipulative, challenging pain in the neck of the nursing staff. It hadn’t been come to the surface yet that I was a trauma survivor and, if it had, no-one cared.

Benzos can cause dissociation to worsen in people with dissociative disorders. Indeed, I find that I do become more fuzzy and I really don’t like it. Benzos can also cause people with borderline personality disorder to become more irritable or impulsive. While I personally haven’t noticed I become particularly aggressive on benzos, like I mentioned above, after the first effects wear off, I do notice I become at least as irritable as I was before taking the medication. I used to attribute this to the fact that the reason for my agitation wasn’t solved by my taking a pill.

After all, one thing that Ashley doesn’t cover is the fact that people with severe mental illness who get prescribed benzos as bandaids for agitation, may very well have good reason to be agitated. I found that often the nursing staff in the mental hospital weren’t following my care plan or my crisis prevention plan at all and, when I got irritable as a result, I was quickly directed to take my Serax.

All this took place in 2007 or 2008, before I was diagnosed with DID or PTSD or BPD for that matter. Once diagnosed with these, I still ended up with a prescription for lorazepam (Ativan) though. In fact, I at one point took it at a relatively high dose of 3mg per day for several months. Thankfully, my withdrawal symptoms once quitting cold turkey due to a miscommunication with my psychiatrist, were physical only and I was able to go back on it and taper slowly soon enough.

Currently, I do have a prescription for lorazepam as a tranquilizer for when I have a dental procedure. Now that I am thinking about all the things I read in Ashley’s article, as well as what I’ve been discussing with my psychiatrist recently about my fear of losing control, I’m not even sure I’m going to take the medication when the time comes to have dental work done. Which, I hope, isn’t anytime soon.

Accepting My Ordinary Identity in Christ #Write28Days

Welcome to day two in #Write28Days. Today’s optional prompt is “Ordinary”. Immediately, I thought: what a dull prompt! I don’t want to be ordinary. I don’t even want to write about it!

Like I said yesterday, I am an Enneagram type Four. One of the descriptors for type Fours is “The Individualist”. Another, less kind one, is “Specials”. As these denominators say, we don’t want to be boring, like everyone else, ordinary.

When I had just been admitted to the psychiatric hospital in 2007, my parents came to talk to my doctor. They said that, in order to avoid accepting the fact that I am blind, I sought out to be different in every other way possible. For example, as a teen I thought I was a lesbian. I had just gotten acquainted with my now husband at the time that my parents used this against me, but we were by no means dating yet. Besides, in my mental state at the time, my sexual orientation was about the last thing on my mind. That being said, at the core, my parents were probably right: I saw myself as a complicated, unique, special person. Extraordinary.

Now we’re nearly fifteen years on. In a way, I still see myself as different from “ordinary” people in many ways. For instance, I am multiply-disabled, including blind and autistic. I am a trauma survivor and identify as a plural system (dissociative identity disorder). I, however, also now see that I am loved by God and by others as I am. And that is what matters most: my ordinary identity in Christ.

I still sometimes focus on the aspects of my identity that make me different from most other human beings. That’s okay though, as long as my “otherness” doesn’t become all-encompassing. Ultimately, my main identity is as a person loved by God.

Too Many Toys

Today’s topic for Throwback Thursday is toys and pastimes. The first question Maggie asks in her post is: “Did you have a lot of toys?” The short answer would be that yes, I was privileged to have quite many toys, but I must say I wasn’t so spoiled that I always got the latest trendy toy.

I probably shared this story before, but I played with toys quite a lot until I was at least eleven. By that time, my parents and teachers were looking into options for secondary schools and their opinions couldn’t have been any different: while my parents wanted me to go to mainstream grammar school, my teachers felt special education at their low-level secondary school for the blind, preferably residential, was in my best interest. My mother one day took me for a “mother-daughter walk” explaining the school’s stance and said that the reason they felt I needed residential special ed, was my behavior. That, in turn, she attributed to my having too many toys. The logic, I never quite understood, but it must’ve been something like my being so spoiled that I somehow felt entitled to display challenging behavior.

She went on to explain that, at the residential school, I would only be allowed one doll and one soft toy. She had given me a Barbie doll for my birthday earlier that summer, but told me she regretted it as soon as she received the school’s report. Needless to say, I always felt weird about playing with dolls from that age on, even though I continued to play with toys and dolls and everything until I was at least fifteen.

Fast forward some ten to fifteen years. When I was in my mid-twenties and diagnosed with dissociative identity disorder, I felt it might help my littles (child alters) if we had toys again. I first bought a box of old Barbies for €70 on a marketplace site. That wasn’t a wise decision as, though the box did arrive, the Barbie dolls were in such bad condition I eventually threw them away. I then decided to buy a couple of new ones at a toy store, but the littles hardly played with them. They prefer soft toys.

Speaking of which, one of Maggie’s questions is whether you still have any toys from your childhood. I don’t, as they’re probably all at my parents’. However, I do still have my stuffed whale Wally, whom I got when I left the NICU at three-months-old. I still sometimes sleep with it.

Wally

Did you have many toys growing up?