We’re In Pain

So we’ve had a mouth ulcer for some days now and as of today, it really hurts. Our staff called the GP, since we can’t go to the dentist now due to our facility’s COVID-19 restrictions and also since they already knew it was a mouth ulcer. The medical assistant couldn’t decide what to do right away so she talked to the doctor herself. Our staff called back some time later. At first, the doctor said to just take paracetamol, but our staff nagged a bit, so now we’ll get some lidocaine gel. This will probably arrive tomorrow.

We somehow misunderstood the doctor’s telling our staff to just give us paracetamol as her thinking we weren’t in significant pain or that we were overreacting. This caused some of us a lot of upset. Over dinner, we were feeling really overwhelmed by the pain and also other clients’ noise. We somehow couldn’t speak until after we’d had a full-on meltdown. Then we got to express our pain and our staff fetched us some paracetamol. That did help some. We’re still in pain, but it’s manageable.

We generally feel very triggered of late. We’re currently reading a foster care memoir by Maggie Hartley called Who Will Love Me Now?. It’s about Kirsty, a ten-year-old being rejected by her first foster carers after they took her in from a neglectful biological mother as a baby. Understandably, Kirsty feels that no-one loves her now and is acting out a lot to prove this point.

I feel a lot of the more disturbed younger parts can relate to this. Thankfully, our parents never abandoned us, but they did threaten to institutionalize us a lot. Age ten was around the time this started.

I also showed a lot of the behaviors Kirsty shows. I mean, I would also often tell my parents that they didn’t love me. Though I didn’t experience the early abandonment Kirsty did, I do most likely suffer with some attachment issues. I can only speculate as to why this might be.

As we’re now in a place where at least so far the staff are saying we can stay, I notice we act out a bit out of a need to “prove” our point. Which is what, really? That no-one wants us, I guess. I’m not 100% sure how to let go of this feeling.

I did journal a lot in my Day One journals over the past few days. It feels good to let out my thoughts. I’m trying to make this a daily habit and hope my blog won’t suffer because of it.

#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.

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.

Not Quite a (Traumagenic) System?

I feel so awful right now. The visit from my parents went so well and this is actually confusing me. I mean, I consider some of my childhood experiences traumatic. Quite a few, in fact. How can this be the case if I have such loving parents? I mean, yes, they’re still a bit odd. My father just talked about the birds and butterflies and flowers we encountered. He didn’t ask me any questions or share anything about himself. That doesn’t make him a CPTSD-engendering parent though.

I had a dream yesterday about me needing to take the SCID-D assessment for dissociative disorders and it came back showing that I don’t have a dissociative disorder. It was probably triggered by my having read a message in a DID support group about how plurality is now something anyone can claim because of endogenic (born multiple) systems etc. We’re not an endogenic system, but can we claim to be traumagenic? Can we even claim to be a system at all?

I mean, other than online and to a few specific people who know us closely, we don’t share our names. It could just be that I gave names to different emotions or aspects of myself that I find hard to understand. This is what my community psychiatric nurse said on our last appointment. She said the consultant recommending EMDR for my traumatic experiences hadn’t recommended any type of “deep-digging” therapy. Not that I want that, but on some deep level (no pun intended), her claim that my parts are feelings, made me feel invalidated.

I told my CPN that, whichever treatment approach I try, my parts always show up and disrupt the process. She countered that we hadn’t tried EMDR yet. I know, but this approach is known to cause worsening of dissociation in those with dissociative disorders. Can it get me to “split” even more, even if I’m not a genuine multiple in the first place?

When I shared my doubts/denial on an E-mail list for DID, someone replied that I sign my E-mails with lots of different names. Well, that’s as easy as typing on a keyboard. No-one needs to have any special characteristics to be able to do this. It doesn’t prove my multiplicity. Besides, I know there are parts and they have names, but are these parts truly differentiated enough?

In a sense, it doesn’t matter. I’m not planning on seeking a DID/OSDD diagnosis anytime soon and by the time I might have overcome my fear of psychological evaluations, I guess DID has been removed from the DSM. Either that or Onno van der Hart and other scandalous therapists have given it such a bad name that no-one in the whole country will support me. And that’s even assuming that said assessment would show some type of dissociative disorder. Then again, if I’m claiming plurality for the sake of it, am I not contributing to the stigma surrounding DID myself?

In addition to the dream I had yesterday, I have recurring dreams about my parents finding out I’m in childhood trauma survivor support groups. They always confront me and my husband always sides with them. I guess I should leave those groups in case it really happens. I mean, I’m not an adult child of normal parents, maybe, but then again who is?

Listening to My Inner Voice(s)

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.

Tuesday Ramblings

Today I don’t know what I want to write about. I’m struggling a bit. Had a hard session with my community psychiatric nurse this afternoon. During the last bit of it and after it for a while, my leg kept trembling. It generally does when I’m very emotional.

I think a switch of personality happened during the session too. I’m not sure it was a full switch or just passive influence. I feel like a fraud for thinking this really happened.

In other news, I ordered a new iPhone last Saturday and it arrived yesterday. Today, I installed it. I got most things working pretty well. I got the iPhone SE 2020, which is much like the iPhone 8 but with better battery capacity, higher processor speed and a slightly better camera. It does take a little getting used to, particularly because it’s larger and heavier than the old SE I used to have. I can’t imagine that this is really the smallest iPhone currently on the market. It is though. It also feels weird that the home button isn’t actually a button anymore. Thankfully this model still does have a home button though and doesn’t require face ID.

I walked three times today. Unfortunately, I didn’t meet my step goal and, as I’m supposed to go to bed in half an hour or so, I don’t think I will.

I asked my husband to bring my yoga mat and weights when he visits me again. I looked at some fitness blogs yesterday. Though I don’t think I’ll ever be a fitness blogger even as much as I’m a book blogger, these bloggers did inspire me to get active. I googled a basic beginner’s fitness plan. I haven’t started with it yet, but hopefully will soon. I also really hope to be starting yoga again soon.

How are you all doing?

A Twelfth Grade Memory

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

Reflecting on My Life: 2003

Last night, I couldn’t sleep. I was looking for some link-up parties to join in and came across the Life This Week linky. In this week’s edition, host Denyse shares her memories of the year 2003. As this is my first time participating in the linky, I should really start my story from the beginning on, but for some reason, I can’t.

I may have shared this before, but in secondary school, I always had this superstition that life ran in circles. There’d be a year of struggle and crisis, a year of renewed hope and finally a year of disillusionment, after which I’d spiral back to struggle and crisis. The year 2003 was a year of disillusionment.

In 2003, I was sixteen. I turned seventeen at the end of June. I was in the tenth grade for the first half of the year and in the eleventh for the last half.

In the summer of 2002, I had barely moved up a year. My grades weren’t that good and I only moved up because I worked very hard the last few weeks of the year. I had been struggling with feeling like an outcast due to my blindness the entire 2001/2002 school year. That was to change by late 2002, or so I believed. My high school tutor promised me he’d help me feel better.

What he did was come up with a social skills assessment for blind students and have the teachers fill it out. That was no good for my self-esteem, as I showed considerable weaknesses. No-one knew at the time that I was also autistic, even though I suspected it.

The year 2003 was the year I started to learn about myself from a possibly autistic point of view. Even though I had started suspecting I was on the spectrum in mid-2002, I didn’t feel comfortable joining online support groups for it till 2003.

This was also the year I expanded my horizons where it came to using the Internet in general. I had gotten an Internet connection in May of 2002. By April of 2003, I started keeping an online diary on DiaryLand, which several years later morphed into my first WordPress blog.

In the summer of 2003, I attended the International Computer Camp for blind students in Switzerland. I had attended it the year before, when it was held in England, too. This year, I felt a bit disappointed in the end, because it didn’t provide me with the cathartic experience I’d felt the year before.

In 2003, I also explored fictional storytelling as a way of expressing myself. I was experiencing some significant selective mutism at the time, which I could circumvent by pretending I wasn’t talking about myself. This is how my “mirror image”, Kirsten, came to be. She is one of my main alters to this day.

Finally, this was the year I was first starting to explore future planning. Here in the Netherlands, students with disabilities attending mainstream education didn’t get any type of special transition planning at the time. I was expected to just get by and go to university straight out of high school in 2005. In 2003, I started to doubt this would be a success, but I didn’t voice my doubts yet. As it is, I didn’t actually make it clear that I wasn’t going to university right out of high school until April of 2005.

Where were you on the path of life in 2003?