#WeekendCoffeeShare (September 4, 2021)

Posted on by Astrid

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

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.

#WeekendCoffeeShare (May 23, 2021)

Posted on by Astrid

Hi everyone on this rainy Pentecost! Today I am joining #WeekendCoffeeShare once again. Let’s have a drink and let’s catch up.

If we were having coffee, I would share that the weather is still quite gloomy here. Like I said above, it’s been raining most of the day. It’s also pretty cold. Man, I can’t wait for summer to start!

If we were having coffee, I would tell you that this week was rather emotionally draining. On Tuesday, I found out that I won’t be able to start my new medication until at least this coming week. My care facility’s physician will be back from vacation on Tuesday and should be asked to look into the topiramate then. With some luck, I will be able to start taking it later that week.

Due to the disappointment about this and due to other triggers, I was intensely dysregulated Tuesday evening. Same yesterday. Thankfully, during the rest of the week, I have been able to stay at least out of crisis.

If we were having coffee, I would share that I’m contemplating seeking a re-assessment and possible therapy for what I think may be dissociation. I mean, I’m still unsure whether I’m making the alters up or not. Of course, on some level, I made them up regardless of whether I’ll be diagnosable with a dissociative disorder or not. What I mean though, is I’m not sure whether they are trauma-based or some result of escapism. I’m not even sure my “trauma” is real. I mean, of course it was real, but maybe it wasn’t as bad as I feel it was, or shouldn’t be affecting me as much.

I E-mailed my nurse practitioner about this on Thursday and am hoping to discuss it at our next appt.

If we were having coffee, I would share that I went to McDonald’s for lunch on Friday. I had a crispy chicken burger and fries. It was delicious!

If we were having coffee, I’d share that I was touched to the core by today’s edition of Hour of Power NL. Bobby Schuller’s sermon was on the Biblically-originating saying “Your days are numbered”. It really got me inspired to try to make a regular habit of Bible study and prayer again. I mean, I’ve so far lost only one day in the YouVersion app, two weeks ago, over the past five months. However, I notice that I’m not taking the Bible as seriously as I should and would like to.

If we were having coffee, lastly I’d share that my husband would’ve come to visit me this weekend, but he has a headache. I hope it’s gone soon. Tomorrow is a holiday too so he can come then if he feels better.

How have you been?

I Am a Rock #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “roc”. I didn’t know that even is a word, but we can use words with “roc” in them too. I was immediately reminded of “rock” and then of the Simon & Garfunkel song “I Am a Rock”. As I assume most of you will know, it goes like: “I am a rock, I am an island. And a rock feels no pain, and an island never cries.”

This reminded me of the fact that, at around age thirteen, I would describe my class as a country with lots of states and one of them, me, would be an island. Think Hawaii. This, of course, symbolized the fact that I felt like an outsider or even an outcast in my class.

One day, I showed a girl in my class the piece about the island. This girl promptly decided to type on my laptop and let my text-to-speech read: “Astrid is my friend.” She probably felt pity for me, as the friendship never lasted. It was rather based on rules, as was my entire class’s associating with me.

Like, before I found my way around the school by myself, classmates had to sighted guide me around. There was an entire schedule which had the girls be sighted guide and the boys carry my backpack, until I decided, with a little nudging, that I could carry my own backpack. I mean, yes, it was heavy with my laptop and all, but so is every early secondary schooler’s backpack. From then on, the boys would sighted guide me too.

This meant I had to sit with them during recess. After the island story incident with my “friend”, she and her clique allowed me to sit with them everyday during recess even if it wasn’t their turn to be sighted guide.

At the beginning of my second year at this school, I decided I’d had it with sighted guides and especially with the schedule. I tried to find my way by myself, often struggling, but this was better than to have people assigned to me who didn’t want to associate with me. Quickly, that became the entire class, including my “friends”.

I am a rock. I am an island. And a rock feels no pain. Literally. By the end of my second year in this school, I had mastered the coping mechanism of detaching from my surroundings and myself. I felt like I lived in a movie. I still feel that way at times, even though I have no need (I hope) to escape my current life.

Scars Remind Us #WQWWC

Posted on by Astrid

“Scars have the strange power to remind us that our past is real.” ― Cormac McCarthy, All the Pretty Horses

Today’s topic for Writer’s Quotes Wednesday Writing Challenge (#WQWWC is “Healing”. I originally intended to post another quote, but then I had to address the fact that the source person isn’t an author. Not that I’ve read anything by Cormac McCarthy. Frankly, I just stumbled upon this quote on Goodreads by looking for quotes on this topic. However, the quote really speaks to me.

My psychiatrist’s appointment last week opened me up to a whole lot of trauma memories. Up until that point, I hadn’t thought that anyone would ever believe me again, after my dissociative identity disorder and PTSD diagnoses had been removed and everyone had basically decided I wasn’t a real enough trauma survivor at least until or unless I got re-assessed. That’s how I interpreted my psychiatrist’s insistence that I get evaluated for dissociation when I was still living with my husband. She was a great psychiatrist, but she never quite considered helping me with my trauma symptoms without a diagnosis. Then again, neither did I. Now I may even be ready, sort of, to ask for the re-evaluation myself.

The memories have been coming flooding back at me over the past week or so. I mean, I had flashbacks before, which is why the psychiatrist proposed I start topiramate, but they weren’t as bad as they are now. Unfortunately, I won’t be able to start on the topiramate until next week, as my care facility’s physician is on vacation and she needs to okay the prescription.

That being said, the fact that my psychiatrist is willing to prescribe me this medication specifically for my trauma-related symptoms, to me means she takes my trauma seriously. No-one before has ever suggested I try any medication or therapy for my trauma without my first going through the assessment process. Which, to me, means needing to prove my past and the resulting experiences are real first. Well, I can’t, because my dissociation makes me doubt my own reality.

Besides, one of my core traumas is not being validated for who I am. This has meant I’ve had to wear one mask or another, or sometimes several at once, my entire life. For this reason, I do not know who I am at all and constantly doubt my reality of experiencing post-traumatic stress symptoms.

In this sense, it is rather hard to process that most of my trauma didn’t leave physical wounds and that the traumas that did cause physical wounds, aren’t the worst ones. If my traumas had left physical wounds, there would be physical scars to remind me that the traumas were real. Now, there are mostly just emotional scars. I am still learning to validate the experience of my emotional wounds.

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.

An Intense Monday

Posted on by Astrid

I’m not really sure what I want to write today. I started writing this blog post several times, only to delete it again halfway through. I intended on doing a food diary, then realized I wasn’t intending on sharing it here. (I did write a food log in Day One, my diary app, for today.) I then tried to do a more general health and wellness log, only to realize these don’t make sense if I don’t do them regularly. Then I started writing a post about today.

Today was, indeed, rather intense. Not really because of the food journal. I did okay on that one and it helped me make some healthy choices without becoming obsessive about it.

In the morning, a staff made a phone call to the assistive tech company. Yeah, my Braille display is once again broken, for the fifth or so time in eighteen months. I can still work around all the stuck dots, but I really want it repaired.

Then in the afternoon, I had an appt with my nurse practitioner. I can’t remember exactly what we talked about. I mean, yes, he shared about the bus metaphor. This is a metaphor in which a person is like a bus driver and all their thoughts etc. are passengers on the bus. I had already commented last time that my bus has multiple drivers, in that, if I hear a voice commanding me to do something, that voice (ie. alter) can take over the wheel too. Now I am hesitant to use words like “alter”, because I know my nurse practitioner doesn’t believe I have a dissociative disorder. This is my blog though so I can do with it what I want.

Today we somehow got talking about this metaphor in relation to emotions. Sometimes, you see, I get an emotion or urge or whatever and have no clue why. Honestly I can’t remember how this relates to the bus metaphor, but oh well. Oh yes, I told my nurse practitioner that Astrid is the bus with all its passengers and drivers. The body, then, is the bus.

Later, in the evening, we had an emotional reaction to a minor situation. After I calmed down, I talked it over with the staff who’d seen me have the reaction and it turned out I had no memory of it. I can now sort of see how I probably had that reaction, but I still can’t remember it as my own reaction.

This makes me feel kind of freaked out. I know that amnesia is part of dissociation, but didn’t we agree that I don’t have a dissociative disorder? Besides, whenever I do claim to have an undiagnosed dissociative disorder, it’s OSDD1B, which means having alters without significant amnesia.

I knew from previous experiences that I do experience what’s called emotional amnesia, where I can remember something but not the feels that go with it. The incident of amnesia that got my former psychologist, back in 2010, to suspect DID, was, in fact, emotional amnesia only. I know this because I claimed that I’d not remembered what went on in our session, but I clearly must’ve remembered something as otherwise I wouldn’t have known to tell her.

I know I don’t need a diagnosis right now. I can function okay’ish most of the time. Or can I? After all, when I’m functioning, I can’t remember that sometimes I am not and when I’m in severe distress, I can’t remember what it’s like to function normally. Or maybe I can, on some level. This is all so confusing.

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.

Six Is a Blank

Posted on by Astrid

Today, in The 365 Journal for Empaths and Healers, I came across a prompt that asked me what the six-year-old version of me would think about my life today. This is really hard. I have very few direct memories from before the age of around eight. Those I do have, are clouded by the stories my parents told me.

I mean, they said I was a very cheerful, laid-back child before the age of seven. I am pretty sure I wasn’t. Lisel (formerly Little), my 5-year-old insider, holds some very distressing memories. These concern both my time at the mainstream school Kindergarten and my time in hospital at the age of four.

Then six is a blank. I do have a six-year-old insider, but she most likely formed much later. Same for seven. Suzanne is seven, but she only feels she has to grow up too quickly.

To be honest, yes, six is a complete blank. While I do have some memories of age five and seven, I don’t have any of the year I was six. I know I transferred to the school for the visually impaired about six weeks before my sixth birthday. I know I laid the first stone for a new care home for visually impaired children just before my sixth birthday. Then I remember learning Braille with giant dots, but that wasn’t till age seven.

I am tempted to think six was uneventful. Then again, when I was asked to recall a memory from age four for an interview at age seven, I didn’t mention going to Kindergarten, being in hospital or any such to an adult significant events. Instead, I recalled my getting my favorite doll at age three. It isn’t that significant events just aren’t stored in a child’s memory, since a classmate was very clear about the year he developed a brain tumor and lost his sight. Could it be I dissociated at such an early age already? Or does this mean my going to mainstream school, being in hospital etc. just didn’t have the impact I think they had now? I’m not sure.