#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?

We Are Cinderella!

Hi all! Today, I discovered Throwback Thursday. Well, I had heard of it before, but always assumed it was an image-based blog hop, as this is what the term usually means. Not so in this case. Lauren and Maggie’s Throwback Thursday allows us to write a post taking a stroll down memory lane. I’m pretty sure photos are allowed, but the main focus seems on writing. Today’s topic is nicknames.

I have had many nicknames throughout my life. Some are derived from my name. For example, many people simply abbreviate “Astrid” to “As” and my husband and his family then add the commonly-Dutch “-ie” suffix for “little”, so my nickname becomes “Assie”. My husband and his two sisters all have -ie nicknames, with my husband Jeroen’s nickname, “Joenie”, being the most related to his actual name.

Then there are these nicknames that are based on some letters out of my name but not many. An example is the Dutch word “asbak” (which translates to “ashtray)”. I hate that nickname with a vengeance.

Another one is “Assepoester”. This is the Dutch name for Cinderella in the fairytale. I don’t like the Dutch nickname, but I for one do relate to Cinderella, particularly to the feeling of having to be transformed by a fairy (ie. put on a mask) in order to be acceptable as I am.

For this reason, I sometimes still use Cinderella as my nickname. That is, I do so when referring to myself and my multiple alter personalities (dissociative identities) as a system. Usually, I refer to the collective as Astridetal, as in my blog’s URL, but at one point we felt somehow like we needed a collective name that didn’t claim that Astrid was the “owner” of everyone else. So Cinderella System was born!

Did or do you have any interesting nicknames?

The Puzzle and Its Pieces #SoCS

When I was first diagnosed with dissociative identity disorder (formerly known as multiple personality disorder) in 2010, I was already aware of some of my alters. I at the time explained to my therapist that the body or “Astrid” was the puzzle and the alters were the pieces. In other words, there was no host who “owned” the other alters as such. I felt that we needed to cooperate as one collective, not as one piece.

I was, at the time, unaware of the other significant meaning of the puzzle piece in my mental health experience, that is, its symbolism in autism-related lobbying. I mean, Autism Speaks and other cure-focused organizations employed the puzzle piece as a symbol of something being “broken” or “missing” about us autistics. That’s why autistic activists are so vehemently against it.

I personally till this day don’t mind the puzzle piece as much. I mean, I don’t like it that Autism Speaks uses it, but other than that, I’m not sure what I think of the symbol. I’ve heard the alternative is something like a rainbow-colored infinity symbol or something, which I have absolutely no concept of, never having seen the infinity symbol when I still had enough vision to picture it.

I do think the puzzle is a great symbol for plurality in general and dissociative identity disorder in particular. Another one is the kaleidoscope, but I don’t like that one as it is the name of the Dutch DID charity. That one is very exclusionary and kicked me out on the basis of not having a diagnosis given to me by someone they approved of.

So, the puzzle. The pieces, when cooperating perfectly, make up the proper image of what should be “Astrid”. Then again, that’s an ideal. Hard to achieve. I don’t think we ever will. And that, in my opinion, is okay.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “Puzzle”.

#WeekendCoffeeShare (September 4, 2021)

Oh my, it’s September already! I at first was going to type “July” in this post’s title, then thought that it was August, only to realize that month too has passed. The weather is still pretty nice for late summer/early fall: sunny and about 20°C.

Today, I’m joining #WeekendCoffeeShare. I already had all my coffee for the day, so a soft drink or water will have to do. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been a true rollercoaster emotionally. It started with my vision screening by the blindness agency. I really want to share more about my feelings of grief and denial about having lost all my vision. In fact, I still always want to put in a caveat about that tiny bit of light perception I still have left whenever I’m saying I’m now totally blind. But I guess that’s what I am: totally blind.

Then again, I don’t want to wallow in my sadness and would quickly move on to demonstrate VoiceOver Recognition and celebrate the powers of technology.

If we were having coffee, I’d also share that the day center is reopening on Monday after eighteen months of being more or less closed due to COVID. My day activities will largely remain in the home with my own one-on-one staff though.

That being said, I did hyperfocus a lot on the details of my activity program and the times staff aren’t directly available for me. This caused some major distress, but I eventually managed to put things into perspective.

If we were having coffee, I would tell you that I finally surpassed my Mom with respect to step count in the Fitbit app. For a while, I myself had been last among my Fitbit friends. I however did get in over 10K steps two days this past week. That’s a big win, considering I struggled to even get to 5K most days last week.

If we were having coffee, I would vent my frustration about my pasta machine, which I use for polymer clay, not working correctly. The thing I use to attach it to the table, won’t work. Thankfully though, the staff who gave the machine to me has a son who may be able to fix it.

If we were having coffee, lastly I would tell you that I’ve been doing a lot of inner work lately relating to my life as a dissociative (multiple personality) system. After some conversations with my assigned home staff, I finally decided to do a system mapping again. Like I mentioned on Thursday, I used to have a list of all of us here on the blog, but removed that as it was less relevant. My staff though do find it useful.

I also downloaded an app called Simply Plural, in which systems can keep track of who’s “in front” (the alter you see on the outside) and can do system polls on decisions too. I will probably write the developer about some bugs in its usability with VoiceOver and some suggestions, but so far, it seems quite cool.

I also finally decided to download some more books exploring trauma and stuff from Bookshare. I might explore the subject more, be it in my personal journal or here.

How have you been?

Dissociative Identity

The person in the mirror is not me. The person who carries this body’s name, doesn’t really exist as its own identity. We, as in, me and about 40 other insiders (also known as alters, parts or headmates depending on your perspective), share the body. We each have our own names; none of us claim the body’s given name, even though we’ve never felt comfortable claiming a collective name for ourselves other than Astridetal. We all have our own ages and more or less age-appropriate abilities too.

This evening, I was talking with our assigned staff after another small crisis in which one of the more emotionally immature insiders came forward. I was talking about the fact that we switch between alters more than I’d like to admit on a daily basis. I mean, Annemiek is our crafty insider. When we do polymer clay or jewelry-making, she’s out in the body. She, however, can see in the inner world, even though the body is completely blind. So when she gets frustrated with the intricate aspects of crafting, she shoves someone else forward.

Deborah was out this evening. She is 22-years-old, but very emotionally immature and very mistrusting of others. She is one of the ones claiming to need even more one-on-one support than we already get.

Our staff knows about our existence, but she didn’t know how we juggle the frequent switches on a daily basis. Some of these switches are not as overt as Deborah’s coming forward this evening. For example, when Annemiek is crafting and everything goes to plan, she can be pretty well-collected.

At one point, the staff suggested we create a list of insiders. We used to have one here on the blog, but deleted it as this blog evolved from a mental health blog to a more eclectic blog. Sadly, it turned out I hadn’t saved the file anywhere, but I had created a list some nine years ago for a former therapist. That one was quite eye-opening, as not only have a lot of insiders emerged since then, but some old ones have changed roles. It was very interesting looking at and updating the list.

Sometimes, it hurts that I’ve lived with these strangers for so long. I know for certain that some of us emerged as early as 2001. That’s twenty years ago. Even so, I suspect some of us have been inside this body for far longer, as is commonly the case with people with dissociative identity disorder (a diagnosis we do not currently have, by the way, but used to). I cannot at least remember a time without alters.

This post was written for Reena’s Xploration Challenge #197.