Just Rambling

IWSG

I really should be posting my Insecure Writer’s Support group post today, but I’m not fussed. I didn’t write as much over the past month as I’d liked to and the optional question doesn’t appeal to me. For this reason, I’m just going to ramble. I will post the #IWSG link and image on this post, but I won’t really be sharing much writing-related news.

I mean, the optional question is how long you let drafts sit there before redrafting. The short answer is that I don’t really do drafts. I write my pieces in one go usually and publish them onto my blog right away. Of course, I do have freewrites and some works-in-progress that I haven’t published anywhere, but even my one published piece that I wrote back in 2014, I wrote in one sitting.

Okay, now that we have this out of the way, let me ramble about other stuff. Today, like most of the past month, has been mixed. I was okay for most of the morning and afternoon, but in the evening, I’ve really been struggling. My feelings that, if I drop my mask (figuratively speaking), everyone will run from me and no-one will want to care for me anymore, are intense. For those who might be visiting from the IWSG: I live in a care facility due to my multiple disabilities, including challenging behavior. Lately, I’m spiraling more and more out of control and this seems to create a vicious cycle of anger, shame, self-hatred and more anger.

Yesterday, I had an appointment with my psychiatric nurse practitioner. We decided there that I won’t go the diagnosis route for dissociative disorders, but that off the record at least we agree that I have dissociative identity disorder (DID). We won’t do a whole lot of system mapping. Not only have I done this already, but it seems counterproductive to the idea of needing to practice being present.

Speaking of which, I looked up the learning to be present exercise in the first chapter of Coping with Trauma-Related Dissociation and had my staff write it down. The book is in English (at least, my edition is) and my native language is Dutch, so I translated the exercises and where appropriate, adapted them to suit my needs. After all, one of the exercises is naming three things you can see around you. As I am blind, this won’t work. I do find that other exercises do help me. One in particular is the butterfly hug.

Tomorrow, my GP will get back to me about my medication. I would’ve gotten topiramate prescribed to me for my PTSD symptoms, but found out last week that it’d block my birth control pill from working. My nurse practitioner would originally have prescribed the topiramate, but now I need to work something out about getting on a different contraceptive first. This will hopefully be sorted tomorrow or at least then I’ll know when I can come in to see my GP about it. I really hope this medication (the topiramate) will help, since I’m on quite an emotional rollercoaster.

My Top Ten Favorite Inspirational Memoirs

Hi everyone! Today I’m joining in with Top Ten Tuesday (#TTT), a weekly book-related meme. Since I don’t read nearly as much as I would want to or as book bloggers do, I don’t participate in this meme that often. I love it though! Today its topic is a freebie, so I get to pick one. And you know, I’ve always wanted to share about my top favorite inspirational memoirs. Here goes, not in any particular order.

1. The Hospital by Barbara O’Hare. This is a truly gripping memoir by a woman who survived secret experimentation and sexual abuse in a children’s psychiatric hospital. I read it back in 2018 and still love love love it.

2. Who Will Love Me Now? by Maggie Hartley. This is my favorite foster care memoir by this author. I reviewed it last year.

3. Where Has Mummy Gone? by Cathy Glass. This is another foster care memoir. It is my absolute favorite Cathy Glass memoir, but I love many others. See my review.

4. Today I’m Alice by Alice Jamieson. This is a memoir of a woman with dissociative identity disorder. Since I have this condition too, I wanted to share at least one memoir by someone wiht DID and this is the most recently-published one I’ve read. It was still published back in 2010, but I think it’s still available.

5. Let Me Go by Casey Watson. Yet another foster care memoir. Can you tell I love this genre? I was almost going to make this list all about those. Let Me Go came out last year and I reviewed it back in October.

6. No Way Out by Kate Elysia. This is a truly gripping story. It deals with sex trafficking of young women in the UK. I was going to review this one last year too, but didn’t get down to it.

7. Finding Stevie by Cathy Glass. Yes, another Glass book. This one deals with a genderfluid teen who is being exploited online. I really liked it. See my review.

8. A Road Back from Schizophrenia by Arnhild Lauveng. I had to google its English title, as I read it in Dutch. I am not sure it’s still even available, but it was definitely a great read.

9. Born on a Blue Day by Daniel Tammet. This is another older book which I read in its Dutch translation before I had access to Bookshare or eBooks. This is a memoir by an autistic person.

10. A Real Person by Gunilla Gerland. Okay, I’m getting annoying with my older books that I didn’t even read in English. Sorry. This was one of the first memoirs by an autistic person I read after being diagnosed myself.

Do you like memoirs? Any recommendations?

A Very Intense Day Today

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

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?

An Intense Monday

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

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

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.

Sweet Child O’ Mine: My Inner Child Parts #Blogtober20

Welcome to another day! The next prompt in #Blogtober20 is “Sweet Child O’ Mine”. I don’t have children and never will. However, I do have inner child parts and am pretty childlike at times, for better or for worse.

As regular readers of my blog will know, I have some dissociative symptoms. Particularly, I experience identity confusion and identity alteration. The latter of those is more commonly known as having multiple personalities. They each have their own names and ages too.

For example, Milou is a cheerful eight-year-old. She loves to learn independence skills like cooking, where appropriate to her age, of course. She is also quite the adventurer.

Suzanne, on the other hand, is quite emotionally disturbed. She is seven-years-old and feels the burden of having to grow up too fast. She often regresses into an emotionally much younger state.

There are many young parts inside of my head. It goes too far to talk about them all here. I mean, it’d probably confuse all of you, as it does me sometimes (hence the identity confusion).

Also, of late, I’m not feeling them that much. Yes, I do feel childlike, but it’s more like I can own the feelings myself. That’s considered a sign of healing. It might be temporary though, as it often is.

Dissociative symptoms such as multiple personality are usually the result of trauma. I, indeed, endured quite a few adverse childhood experiences. I also experience a large gap between my intellectual ability and my emotional functioning. In fact, when being assessed on a scale for emotional development, I was said to function at a level similar to an eighteen-month-old child. On some subscales, I even function at a level similar to a baby. This distinction may be one reason I tend to disconnect from myself.

Of course, everyone has an inner child. Or maybe more than one. However, for me, I often cannot function like an adult would when I’m in inner child mode. For example, when a child part is prominently present in my body, I cannot usually talk like an adult would.

Right now, like I said, I am able to retain both my childlike wonder and my adult functioning for the most part. Like I said though, this may be a temporary experience. I’m not sure and only time will tell.

#Blogtober20

#WeekendCoffeeShare (July 26, 2020)

Hi all on this summerly late Sunday evening – or should I say early night, as it’s actually past my bedtime right now? I’m still wide awake though, so thought I’d join in with #WeekendCoffeeShare. It’s too late for me to grab a coffee, but if you’d like one, I can make you one.

If we were having coffee, I would share that we were supposed to get heavy rain here today. We got some light rain in the morning and did get rain at night, but overall, it’s been a pretty rain-free day. I got to take an evening walk at 9PM. That suited the staff, as most other clients are in bed by then.

If we were having coffee, of course I’d share that I got approved for a higher care profile last Thursday. This means that the facility gets more money for me and they might be able to get some extra staff hours in. I found the letter detailing the decision in my government inbox on Friday. It was a bit hard to read how challenging my behavior really is. This care profile is called “living with very intensive support and very intensive care” and is the highest care profile for people with visual impairment.

If we were having coffee, I would tell you I made another keychain, this one for my husband. I like this one more than I do the one I did for my sister-in-law. My staff got the heart-shaped keyrings at a budget store.

If we were having coffee, I would tell you that after Tuesday’s appt with my nurse practitioner, I’ve been feeling at the same time more out of sorts and more feisty than ever. I do know there’s a great risk that, if I get assessed for trauma-related symptoms, the assessor will deny I have them because I’m too open about my trauma. However, a lot of people in dissociative disorder groups have been validating my experience. Of course, I’ll need a diagnosis of at least (C-)PTSD to get treatment and the prejudices among professionals suck in this respect. However, I’m feeling more and more that I may’ve found a community I belong to and find that I can access support from them.

If we were having coffee, I would tell you that I’m feeling similarly about my body and food. I mean, I at once feel very disorganized and disordered, and at the same time I’m trying to do something about it. Not that it’s any more than just trying at this point. I mean, I just noticed how my jeans fit a little better around my waistline, and that’s not a good thing, as they were rather loose. This upsets me, but it’s quite a challenge getting all of me to agree on how to change it.

If we were having coffee, lastly I would share that this week-end wasn’t quite the healthy food week-end. On Friday, we had French fries and snacks and ice cream for dessert. I also ate a whole bag of sweet liquorice between Thursday and Saturday. That though is a win, in that I’d normally have eaten it all in one sitting. I guess I’ll need to dialogue with myselves to get us on the same page re healthier living.

How have you been?

Thankful Thursday (July 23, 2020): My Care Team

Hi everyone! How are you all doing on this warm Thursday evening? I’m doing a lot better than I was earlier this week. I could actually do an early gratitude list, as there’s more than one thing I’m grateful for. A simple list wouldn’t do justice to how huge these gratefuls are though. Let me share. I’m joining in with Thankful Thursday.

First, I still need to update you all on my appt with my nurse practitioner and CPN on Tuesday. It went better than I expected. The outcome is that my nurse practitioner is going to talk to the psychiatrist and see if he can find us a psychologist to do trauma therapy and work on our emotion regulation issues. I don’t remember all the details of the meeting, but at one point, I/someone in me blurted out that we’re in Facebook groups for dissociative disorders. I quickly added that really that’s none of my nurse practitioner’s business, but still we feel a lot of shame surrounding this.

Then on Tuesday evening, a discussion erupted on Twitter about the ISST-D’s guidelines for diagnosing and treating people with dissociative disorders. There’s this article from 2001 that’s still being used to weed out alleged fakers. It uses such things as being open about your DID or trauma to people other than a few close confidants, showing no obvious shame when talking about your trauma, being in support groups for DID, etc., as apparent proof that you’re fake. Now I must say I’m still conflicted about going the actual trauma/DID assessment route, but this did trigger us. However, my support staff are on my side.

We were still recovering from the shame about all this when we heard the main good news I was planning to share here. I got a higher care profile allocated to me by the long-term care funding authority. I still can’t quite believe it, but I’m so happy. The application hadn’t gone out till last week, but this afternoon, my staff got a call that it’d been approved. I’m still waiting on the letter in my government inbox confirming it, but this is really good news. I now have the highest care profile for blind people in the long-term care system.

I was feeling a bit disconnected when I heard the news. Like I said, I still can’t quite believe it, but it’s such amazing news. I’m so glad my staff were so perseverant that they actually applied for this.

Looking forward to hearing what you all are grateful for today.