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

#WeekendCoffeeShare (December 20, 2020)

Hi #WeekendCoffeeShare people, and everyone else too of course! Today is a cloudy, relatively mild day. I, as usual, just had my last drink for the day – just water today. If you’d like a cup of coffee, that’s fine by me though. Regardless, let’s catch up.

If we were having coffee, I’d tell you my sister and her little family visited me on Monday. They were originally supposed to visit yesterday, but the prime minister was expected to announce a strict lockdown Monday evening. Spoiler alert: he didn’t. While all non-essential stores are closed, people are still allowed to leave their house and visit others. The care agency pandemic team also didn’t close my care facility.

The family consists of my sister, her husband and their 15-month-old daughter Janneke. Janneke was really cute. She isn’t walking or standing yet, but she does crawl around a lot. She can also say some words and is almost completely potty trained. My sister is really proud of her for that last thing.

We got takeout pizza for us adults and a bit of French fries for Janneke. I loved my salami pizza.

If we were having coffee, I would share that I had the first “therapy” appt with my nurse practitioner on Thursday. It didn’t really go well. Not that I’d expected it to, but I had hoped for a little less trivializing and rationalizing of my symptoms from both our sides. I know, we will maintain the status quo on the nature of my insiders until or unless I ever decide to get an assessment. It is pretty likely my nurse practitioner doesn’t even think I need one. After all, he said that considering my insiders to be an extreme form of doubt is a little off, but there’s no need to compare my symptoms to anything anyone else experiences. Well, honestly, yes, there is or we won’t be knowing where we’re headed at all. I think though that most of us prefer not having a clue what we’re doing to being told we’re all products of an attention-seeking, manipulative imagination.

If we were having coffee, lastly I would share that I went to Lobith yesterday. I had some conflicting feelings about it, but I was happy to see my husband. It was good. My husband and I talked faith extensively and he encouraged me to grow in my belief. My husband knows far more about the Bible than I do and he explained some about how to interpret various passages.

What have you been up to lately?

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.

#WeekendCoffeeShare (August 30, 2020)

Hello all. I’m not feeling like writing much right now, but maybe by just starting I’ll get somewhere. I just had a cup of coffee and a soft drink. I think the flavor soft drink I had is gone now, but we might still have coffee. As usual, I’m joining in with #WeekendCoffeeShare. Let’s have some drink – there are probably other soft drinks out in the fridge – and let’s catch up.

If we were having coffee, I would ask you how your weather’s been. Ours is okay. Not too hot, not too cold, not too rainy and not too dry. I’ve been out taking regular walks most days. I don’t think I shared this in this type of post before, but come September, I’ll be starting a sponsored physical activity challenge called Steptember. It’s for the cerebral palsy charity. The idea is to get in 10K steps everyday – or as many days as you can get. I find it quite a challenge – both the sponsoring part and the step goal. However, I’m trying.

As regular readers might know, my Fitbit activity tracker broke down some months ago. I’m now using my iPhone’s built-in movement detector to count my steps. That works okay. I did reach the 10K steps on both Thursday and Friday.

If we were having coffee, I would tell you that I spent most of the week escaping into books. I’m okay, but I do need some escapism right now.

If we were having coffee, I would tell you about the appt with my community psychiatric nurse on Tuesday. It went pretty well. We did go in some depth considering her role as just a nurse. She also told me my nurse practitioner was going to refer me to the specialist center on developmental disorders (autism and ADHD). If the information on the website is correct – which I’m not sure of, as the date of the last update was August 27, 2019 and I’m not sure that’s a typeo -, the wait is several months for an intake interview and then another six months for treatment. I’m not sure that’s just for the inpatient units though, as I know that the workhome is part of the center too. That one has a wait of several years due to it being a living facility.

In any case, before I knew there’s likely a long waiting list, I had all kinds of worries and thoughts about it. I mean, I’m hoping to eventually get trauma treatment and lowering my antipsychotic is still on the agenda too. However, I’m very scared either of these could destabilize me. Then again, I just don’t feel my life right now is all it can be.

If we were having coffee, lastly I would share that I spent the week-end in Lobith. It was good. My husband made us hamburgers with cauliflower and baked potatoes, all out of the freezer. I really didn’t taste that about the cauliflower and the burgers and potatoes were delicious too.

As usual, we spent some time together on the couch and some time apart in the two bedrooms. I have a desk in the master bedroom and my husband has his desk in the other bedroom. That one is also used as our cat’s place though.

Then this afternoon, my mother-in-law came to pick me up and drive me back to Raalte. There, I arrived just about in time for my dinner to still be shoved in the oven.

How have you all been?

#WeekendCoffeeShare (August 16, 2020)

It’s been several weeks since I last joined in with the #WeekendCoffeeShare community. I was thinking of doing a post earlier in the evening, but it was just too soaring hot in my room still. Now it’s past midnight, so technically Sunday and I’m joining in.

If we were having coffee, I would ask you how the weather is where you are, only to complain about the weather here. It’s been over 30°C here all week. Today was slightly cooler, but the humidity made it very exhausting. I’m almost hoping for some thunderstorms tonight. You know, I’m scared of them, but I really hate this heat.

If we were having coffee, I would tell you that my computer crashed on Monday. I guess it got hit with the heat too. It was fine again Tuesday after leaving it off for a night and is still fine now.

If we were having coffee, I would tell you that the woman who lives in the other home that’s part of my facility whom I often talk to, had her birthday on Thursday. I gifted her a keychain that I’d made and she loved it. She did feel a little uncomfortable when my staff asked her whether she’d like to have me visit sometime, but that’s because she needs time to process.

If we were having coffee, I would share that I made some delicious banana and strawberry milkshakes over the past few days.

If we were having coffee, I would tell you that I got a bargain on some peaches and blueberries at the local supermarket. They were three packages of fruit for €5. Blueberries are pretty expensive so I got a small package of those, but I got two large packages of peaches. They are the wild, flat kind of peaches and they’re delicious! I got them on Thursday. Though I ate all the blueberries that evening, I haven’t even emptied the first box of peaches yet.

If we were having coffee, I’d share that I talked to my nurse practitioner on Thursdday. I sent him some piece of writing I’d done for my staff about how I’m feeling. I left the link to my blog in my signature, which I’m not sure was the right thing to do. He said he’d been browsing around a bit. Of course, that made me feel uncomfortable, so I asked him whether he had some type of weird idea about me now. The main reason I asked is because he asked about the meaning of my blog URL, which of course refers to my seeing myself as multiple. I’m trying not to care, of course, and I won’t be censoring myself based on who might read my blog. I know this is a public blog so to be careful about my and especially others’ privacy.

If we were having coffee, I would tell you I have a ton of ideas for blog posts in my mind, but for whatever reason (the heat, maybe), I cannot quite concentrate enough to write them. I’m also thinking of finally starting up my journal writing prompts blog, which I registered with WordPress some months ago. I will post a formal announcement when/if this happens.

If we were having coffee, lastly I would tell you that my husband came by for a visit today. We’d originally planned for me to go to our house for a night, but my husband proposed we eat somewhere and go for a walk. We ended up getting a burger and milkshake at McDonald’s. The walk was short, as I didn’t want to walk in a forest because I had my sandals on and it was too hot and humid to walk anywhere else.

How have you been?

Bookish (And Not So Bookish) Thoughts (August 13, 2020)

Hello everyone! How are you doing? It’s still very hot out here. We got some thunder far away in the distance here, but no rain. I hope that will change tonight. Though I’m scared of thunderstorms, I really need it to cool down a bit.

early in the week, I got a lot of reading done. I finished Five Feet Apart by Rachael Lippincott on Tuesday. I haven’t written a review yet and it’s too late now to write one today. Maybe tomorrow. Then nothing quite captured my interest. I tried to get started on The Falling in Love Montage by Ciara Smyth, but it’s incredibly slow-moving right now and I’m not sure that’s the book or the weather or me.

I’m still interested in books. I keep looking at ones to download off Bookshare or even to buy, but I downloaded only two books this past week and didn’t buy any. I finally downloaded Bloom by Kenneth Oppel. It’s the first book in a sciFi series. I usually don’t read sciFi, but this one sounded great. Then again, it’s a little long that I can read it in a few days.

I’m trying to motivate myself for doing anything other than lying in bed or eating, but it’s hard. I hope once we get slightly cooler temperatures, I’ll feel more energized.

Yesterday I was in a bit of a mental crisis. I engaged in some eating disorder behaviors and was rather irritable. Actually, I’ve been irritable all week. Thankfully, I could write down my feelings and now I’m feeling slightly better.

I also spoke to my nurse practitioner this afternoon. Next Tuesday, he will be meeting with someone from the autism team to discuss my treatment. So far, this feels good.

How have you been? What have you been reading?

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.

Yet Another Night-Time Crisis

Honestly, I don’t know why I want to share this. It’s late Monday evening here and I’m feeling okay’ish. Tomorrow, I’ll have another meeting with my CPN and nurse practitioner to discuss my treatment. This got us worrying a lot last night, so much so that we ended up in crisis.

As I probably said a few weeks ago, my nurse practitioner wants me to try acceptance and commitment therapy. This wasn’t what we’d expected at all and honestly I still don’t understand how he thinks it’s a good fit for my issues. I mean, it’s evidence-based for depression, anxiety and OCD, none of which we deal with to a significant degree.

He was also pretty dismissive of my trauma-related symptoms. Obviously he doesn’t believe we’re plural. Fine by me, though not by some of the others. But somehhow he seemed not to believe I suffer with any type of trauma-related condition at all. At least, he didn’t feel that trauma treatment could or should help us.

This got us worrying last night, as we really have no idea how to advocate for ourself without coming across like a malingerer. It got so bad that we ended up impulsively leaving our room.

After our last case of elopement, the staff decided to lock the door to our home, so I couldn’t go outside. The night staff though hadn’t come to my room to check on me yet. It was 11:10PM. The night shift normally starts at 10:30. Eventually, a substitute night staff came by, saying he had to do one-on-one with another client, that the real night staff was delayed and he was really busy so could I please go back to my room? That upset us greatly, so even though we went back to our room as requested, some of us started self-harming.

About twenty minutes later, the real night staff came to check on us. We were upset, so told her to leave. She left and we cried and self-harmed some more because we were still very upset. Our signaling plan says staff are to stay with us if we’re upset even if we tell them to leave, but I don’t know whether the night staff have access to this plan.

Finally, we left our room again and waited, still panicked, for the night staff to be alerted and to come check on us. She was distraught at seeing us so upset. It makes me feel shame and guilt for making her feel this way. She got us a PRN lorazepam, which calmed us slightly. Still, we didn’t sleep till 2AM.

Now I’m feeling okay again, but I’m still not sure what to do with tomorrow’s appt. I mean, after each crisis, my mental health team say I somehow managed to get out of it. They probably mean it as a compliment, but it doesn’t feel that way. Today, I didn’t even care to call the mental health team. I’m still shifting between wanting to give up mental health treatment altogether and demanding trauma therapy. After all, the reason the appt upset me so much is that it triggered my feelings of being unseen, unheard, unsupported. Then again, maybe we’re not worth being seen, heard or supported.

We Ordered Some Beads

I’m feeling pretty uninspired to write today. I’m still feeling upset about last Friday’s meeting with the nurse practitioner. I mean, I don’t want to claim to have a dissociative disorder, even though on this blog I do sort of claim this. At least, we claim to be multiple. I’m not sure we fully are, but we’re definitely not fully singlet either.

We sent an E-mail to my assigned support worker explaining our issues with the nurse practitioner’s comments. She might forward it to my other staff and maybe the behavior specialist too. The behavior specialist replied to her E-mail from last Friday that I could ask my nurse practitioner why he thinks ACT is proper therapy for me and why he doesn’t want me to do EMDR. Some of us were pretty upset at her reply too.

Today we were upset at not being able to do much with respect to day activities. It rained all day, so we could only take one walk. Other than that, we sat in the living room or in my room. At the end of the day, our crafty part came up with some ideas. We might try making some bead jewelry. It doesn’t have to be professional-looking, but it could be cool.

So I ordered some beads at a store called Creadream. I originally intended on ordering glass beads, but ended up going with plastic ones. They were cheaper and the store had a larger variety of shapes. I got some round beads, some cubes, some rectangles and even some butterflies. Some of the purple ones were on a discounted price, so only like €0.66 for 25 grams (about 45 beads I think it said).

I also ordered some wire and elastic, including memory wire. This is a type of metallic wire that is shaped like a coil that fits around your arm. It can be used for making bracelets. I forgot to order pliers to cut and bend the wire with, but I or my day activities staff might be able to find some later. I also forgot to order a beading needle.

I think the littles will definitely enjoy working with all the different shapes and colors. Of course, we can’t see the colors, but we have some memory of what they look like. We ordered mostly purple ones, like I said, but also some pink, green and I can’t remember what else.

Now I constantly feel shame when I refer to the littles or write in first person plural or the like. I know I can’t fully be myself with mental health professionals, because they aren’t my friends, but why can’t I be myselves on here? My CPN knows the address to this blog and has occasionally read it, but yeah.