#WeekendCoffeeShare (June 4, 2022)

Posted on by Astrid

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)

Posted on by Astrid

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?

Dissociative Identity

Posted on by Astrid

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.

The Shifting Image of My Care

Posted on by Astrid

In September of 2006, when I was still blogging on DiaryLand, I wrote an entry about seeing my life in black and white. I meant not just my life in general, but my care needs in particular. I wrote said post in response to a meeting I’d had with a psychologist several weeks earlier because my behavior at the training home I lived in at the time was spiraling out of control. The psychologist asked me where I saw myself in three years’ time, referring to care needs.

In my response on my blog, I said that I constantly had two images in my mind about what my life would be like, one positive and one negative. These were represented by the two most important alter personalities I had at the time, Carol and Jane.

Jane was fiercely independent. She wanted to live completely on her own without any support, except for maybe a weekly visit from a person to read her mail and the occasional help with deep cleaning.

Carol, on the other hand, saw herself as needing more support. I, at the time, made a point of clarifying that my “negative” image didn’t mean I needed 24-hour care, but that I needed significant help beyond that considered “normal” for someone who’s just blind.

Six months later, I had already discovered that the positive image wasn’t going to come true, yet I shifted my two images. I started to believe that the “good” outcome would be the situation I would live in at my student apartment, which included sixteen hours of support a week. The “bad” image, then, became needing 24-hour care.

You all probably know that the “bad” image eventually came to be true. When I wrote about the 2006 post on my original WordPress blog in 2009, I said that the situation couldn’t get much worse than it had been already at the locked unit. If another three years later, it was worse, I reckoned that’d mean I was in prison or a homeless shelter and hence wouldn’t have access to the Internet.

It didn’t get worse, of course, right? Or did it? I mean, I lived with my husband for some years, but eventually got admitted into long-term care. I now have one-on-one support most of the day. And yet the images are still there.

Jane is still saying I should live independently. Not with my husband, mind you, but fully on my own. Then at least I can’t manipulate people into giving me more and more care and, by extension, cannot drive people away.

There’s another image haunting me. This image wasn’t in my mind back in 2006, or at least I wasn’t aware of it. It is the image of a girl, aged around sixteen, who was a patient in a psychiatric hospital in the late 1990s, where she had been restrained for weeks on end until her parents sought media attention. This is the true worst-case scenario I see in my mind now. But the worst part isn’t the restraints: it’s the fact that the girl was often left completely alone.

I had a few incidents of physical aggression towards staff recently. The staff keep reminding me that they realize that I don’t mean to be aggressive and that they won’t leave me if I am. I hope the worst-image alter, whom I call Rachelle, won’t prove them wrong.

A Very Intense Day Today

Posted on by Astrid

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

Things That Made Me Smile (March 22, 2021) #WeeklySmile

Posted on by Astrid

Hi all on this lovely Monday! I am so excited to have discovered the Weekly Smile. This is, as the name suggests, a weekly blog event in which participants share what made them smile. Having discovered this meme itself is a reason to smile. I love being positive! Let me share what else made me smile.

First up is my new assigned staff’s kindness. Like I said in my #WeekendCoffeeShare post on Friday, I have a new assigned staff. She is calm, kind and very dedicated to her job. I initially worried she might get too attached and then have to withdraw as my assigned staff. She reassured me though that she maintains her professionalism.

Yesterday, I was feeling a bit triggered. The student staff, with whom I am not fully comfortable yet, had been my one-on-one for the evening. In addition, a male staff may get to work in my home soon. He seems kind enough, but still, it’s an adjustment. All this led me to feeling a bit stressed out when I was going to bed. Thankfully, my new assigned staff comforted me.

After the staff had taken me to bed, I pressed the call button a few times for the staff to come back, but she didn’t mind. She has this little rhyme she tells me each time she puts me to bed. It goes something like this:
Sleep well,
Head on the pillow,
Ass in the straw,
Then Astrid sleeps soon.

This time, the staff adjusted the rhyme to address not just me, but all of the voices (alters) inside my head. That definitely made me smile.

Second is my sensory room experience that I was able to create in my own bedroom. First, I found a calming essential oil blend to put in my diffuser. Then, I found the album on Spotify that I used to have in the CD player in the day center’s sensory room. It is called Songbird Symphony. Lastly, I crawled under my weighted blanket and had my staff cover me with the ball-filled blanket that came with the sensory bed from our makeshift sensory room. In total, I had at least 20kg of weighted blankets on top of me. This probably isn’t healthy for actual sleeping, so I threw off the ball blanket before actually drifting off to sleep. However, the feeling before this was so peaceful. It reminded me of Temple Grandin’s “hug machine”. Reading about that introduced to me the comforting effect of deep pressure years before I felt able to explore my own sensory experiences. Now, I totally appreciate my care staff, physical therapist and the manager for having helped me find my sensory comfort.

What made you smile this past week?

A Really Validating Psychiatrist’s Appt

Posted on by Astrid

Today, we had our first appointment with the psychiatrist from the local mental health team. To my surprise, our nurse practitioner came to get us out of the waiting room. He attended the appt too though and looking back, it was really good.

I started to explain that our PRN lorazepam hardly worked at all. The psychiatrist seemed to think that’s a bit odd. We ultimately came to the conclusion that it does do something but the anxiolytic effect causes more emotions to surface.

The psychiatrist then started to talk about the “pieces”, as we call ourselves when talking to mental health professionals. She asked whether I’d ever been in touch with people with similar experiences. This utterly surprised me, as our nurse practitioner had said comparing our experience with others’ is useless. I felt able to share that I’d Googled my symptoms and come across dissociation and had met other people with similar symptoms that way. I did say I don’t really want a diagnosis.

The psychiatrist asked whether each of us experiences the effects of medication differently. Thankfully not, but some are more willing to take medication and to let it work than others. She explained that the mind is stronger than a pill, so if we don’t want to calm down, no medication can make us.

She ended up prescribing us a low dose of quetiapine (Seroquel). This is an antipsychotic when used at higher doses (like in the 100s of mg) but has a greater calming effect when prescribed at lower doses. She told me she had learned how this works – why its calming effect is greater at lower doses -, but had forgotten. I said I’d find out about it someday and let her know.

At one point, I started zoning out. The psychiatrist as well as the care staff who attended, noticed. I honestly had no idea other people, let alone virtual strangers like the psychiatrist, could tell if I didn’t say I was feeling out of it. The psychiatrist told me it’s a coping mechanism and fighting it will only make it last longer. I will work with my nurse practitioner on ways of coping with it when alone.

I also mentioned compulsively looking up things that trigger us online. Like, I now remember yesterday someone was reading a newspaper story about Russian opposition leader Navalny’s poisoning. Then one of the littles got triggered into thinking someone had put poison in her underwear too. The same happens on a more severe scale with us compulsively looking at other places to live. Our nurse practitioner said he’s definitely going to remember this for our upcoming appts.

Looking back, I’m so glad we had this appointment and also so glad our nurse practitioner attended too. He had seemed a bit dismissive when we had an appointment on Thursday, but we were able to express that via E-mail too.

Clarissa

A Profound Appt with My CPN

Posted on by Astrid

Yesterday I had another appt with my community psychiatric nurse (CPN). At first, we went into how I’m doing at the moment. Then my CPN scheduled some appts for me with my nurse practitioner. Last Monday, after all, he and the behavior specialist from my care facility had finally come to the conclusion that I need to do some work on stabilizing myselves and developing inner cooperation before I can do EMDR or another form of trauma therapy. At first, the secretary said the first appt she had available was late December. It turned out to be December 17, so that’s pretty early considering how long I’ve been waiting already.

Then we got to discuss some issues relating to my diagnosis or the lack thereof. These were mostly theoretical, since I have no idea what my current diagnosis is and I really don’t care. I mean, the most recent treatment guidelines here in the Netherlands for complex dissociative disorders, aren’t suited to me (or most plurals, honestly), so I have no reason to want such a diagnosis. All I want is help in getting the inner turmoil under control.

Then I somehow got to mention my former psychiatrist’s comment when first considering assessing me for DID/OSDD in the summer of 2018. She held both of my hands and said: “You have just one body.” Then she went on to explain that, while she was holding our hands, none of us could put our fingers in our ears and pretend not to listen.

We then repeated this exercise. A staff always attends our appts with mental health with us. She now held both our hands and said that we can stay at the care facility. Someone asked cautiously: “Even if I need more help than I get now?” She then reassured us that yes, even if we need more help, we can stay here.

Then the staff asked our CPN what she’s supposed to do when we openly switch, as we had the day before. My CPN seemed not to know, so I suggested she do not elicit it, but do not fight it when it happens either. After all, when she insists that “Astrid” come back, this may create some trouble since “Astrid” is either everyone or no-one at all.

I really hope our nurse practitioner isn’t going to insist people only talk to “Astrid”, as the current guidelines on DID/OSDD seem to suggest as far as I know. I mean, we are okay all listening to the body’s name and won’t sign our names on E-mails or the like when it’s not appropriate, but one of our main issues is that there is no host who somehow “owns” the others. As such, the daily living parts or apparently normal parts or whatever don’t have access to every bit of information needed to cooperate.

Listening to My Inner Voice(s)

Posted on by Astrid

The day two prompt in The Goddess Journaling Workbook is about listening to your inner voice. This is incredibly hard. Not just because I have multiple inner voices, but because a lot of them carry shame.

Today I found out Onno van der Hart, one of the world-s top experts on dissociation, had his psychotherapy license revoked indefinitely for violating a patient’s boundaries. He was the main proponent of the structural dissociation theory. This theory is controversial in its own right, as it dehumanizes alters. For example, therapists are supposed to only talk to the host or apparently normal part, who is then supposed to relay messages from the other alters or emotional parts. One of the main problems with this is shame. The host often feels uncomfortable sharing the other alters’ thoughts because they are painful.

So, as an act of radical rebellion, I am going to now let each alter who’s willing to speak on this issue share their thoughts.

I knew this. DID is bullshit. It’s not real, at least in my case. I’m so happy I am not diagnosed, as this Onno van der Hart, a so-called expert, took twenty years therapying with a client only to make her dependent and then dump her like a pile of poo.

I’m scared. I wish I still had the diagnosis so I could get trauma therapy. I want my therapist to comfort me. I don’t want to integrate, but I do want to process stuff. I’m not sure. I’m scared that no-one will believe me now that the Netherlands’ top expert on DID lost his license.

I don’t want no fucking therapy. I don’t want to be forced to be anything I’m not. I just want to be me and be myself and be accepted.

Fuck. I’m manipulative. The whole trauma thing is made up.

Well, I realize I’m not really even capable of letting each of us share their honest thoughts. I still find that I was going to redact out the four-letter words. I feel tons of shame surrounding this whole controversy and the DID thing as well.

As a side note, Onno van der Hart wasn’t sued for his theory of structural dissociation. I think it will continue to guide psychotherapists and the multidisciplinary guideline for treating DID. Van der Hart lost his license for boundary-violation, including unloading his own personal problems onto the patient, sending her unsolicited, emotionally laden E-mails, etc. My husband said he was just trying to cash on her and if no-one saw it, something’s wrong with psychotherapists in general. I’m not sure how I feel about that.

A Twelfth Grade Memory

Posted on by Astrid

Last Monday, I already shared some memories from the year 2003. Today, one of the prompts over at Mama’s Losin’ It’s Writer’s Workshop is to share a twelfth grade memory.

My senior year of high school was the year I was supposedly planning on going to university after graduation. I knew this was going to be hard, but my aversion to going to college straight out of high school, didn’t really form. Besides, I had no idea what else I was going to do. I remember one day, August 31, 2004, one of the first few days of the school year. I had already come out as dissociative (multiple personality) on my blog in March, but had only been aware of three alters at the time. That day, Carol, who was up to that moment my assertive helper part, gave up and a new one, who called herself Clarissa, emerged.

I wasn’t aware at the time that what I was experiencing was an actual mental health diagnosis, mind you. A friend of mine had told me about dissociative identity disorder after I first came out in March of 2004, but I was still in denial. Part of the reason is that one criterion of DID is amnesia, which we rarely experience.

In March of 2005, my high school tutor had arranged for me to see a blindness rehabilitation center psychologist. The high school tutor, I must say, read my blog, so he knew about the parts, including Clarissa. He had told the psychologist, who obviously immediately thought of DID. She started to ask me all sorts of questions, all of which I either circumvened or answered negatively to. I knew, after all, that, if I’d gotten the psychologist to think I had DID, I wouldn’t be accepted into the rehabilitation program.

In hindsight, of course, I wish I would’ve been more honest. I knew I didn’t have amnesia or time loss, but I did have most other symptoms of DID, some of which I hadn’t become aware of being abnormal. It took over five more years before I was diagnosed with DID.

In the end, I was accepted into the rehabilitation program. I started on August 22, 2005.

Full disclosure: after being diagnosed with DID in 2010, I lost my diagnosis again in 2013. I am pretty sure I don’t have full-blown DID, but probably do have some dissociative disorder.

Mama’s Losin’ It