Psychiatrist’s Appointment Next Week

Posted on by Astrid

Next week, we’ll meet with our psychiatrist to discuss how to proceed in our mental health care. Whether we want to continue at all, and if so, how. We’re very nervous and still haven’t made a definite decision yet.

Our nurse practitioner is still off sick. Until a few days ago, I thought that we didn’t need any mental health care, so we were more or less okay with him having been off for over a month already. I felt that getting assessed for trauma-related conditions, as our psychiatrist had originally wanted, was just stressing us for no reason. Most likely, we wouldn’t be believed so just end up where we’re now, with a BPD diagnosis and required to do DBT. I guess we’d rather keep the status quo than be told we definitely don’t have trauma-related issues.

Then we thought, so what if we keep on merely surviving like we do now? If we don’t get therapy, will our mental health ever get any better? Besides, our psychiatrist had been talking discharge, even though she called it a break. So what if we end up in crisis?

Some of us were also feeling like our psychiatrist wants to get rid of us. Like we’re a pain in her neck. Lots of pain has been coming up and today, we nearly landed in crisis because of it. We called the mental health team, even though we’ve been feeling like we shouldn’t need them. Our former assigned nurse called us back. Thankfully, we had a good talk with her.

She said that not doing DBT or trauma therapy doesn’t mean we’d be discharged altogether. We could also just have an occasional supportive check-in with a nurse. That’s not what our psychiatrist said, but oh well. It also doesn’t mean we’ll never get therapy again, or something. Maybe we could take a break for half a year and see whether we want the assessment an dpossibly therapy then.

A lot of us are feeling all sorts of things. We feel attachment pain, which scares the crap out of some of us and makes some of us feel shameful. After all, our overreliance on mental health was the exact reason we got kicked out of the mental institution last year.

It doesn’t help that our support coordinator has also been off sick for over a week. I hope it’s just the flu. She’s supposed to go to the appt with us next week, but if she’s still sick, of course she won’t come. We did discuss our concerns with our staff at day activities yesterday and they offered to write our questions down for us.

As a side note, we had a very validating experience at day activities. When discussing our issues with mental health care, we mentioned DID (calling it multiple personality). Our staff said she’d seen us switch to a little girl. Wow. I didn’t know anyone could tell unless we use our own names.

Phone Appt With Our Psychiatrist

Posted on by Astrid

Like I said last week, we’d have a phone check-in with our psychiatrist on Tuesday. We called the team’s secretary fifteen minutes after the psychiatrist was due to call us. Normally we wouldn’t be so impatient, but we were at day activities and didn’t have our phone with us all the time. The secretary put us through to the psychiatrist.

The phone appt was better than some of us had expected. That was mostly due to the fact that the psychiatrist didn’t berate us for trying to get into supported housing. She didn’t comment on it at all, which confuses us a little.

The psychiatrist talked about her proposal in early October to get us on the waiting list for a trauma/dissociation assessment. This had given us a lot of stress. Some of us want it, because they feel it’ll enable us to get trauma-informed therapy. Most of us are scared though. Some of us don’t even believe we’re dissociative. Some of us do, but don’t think anyone will believe us. In short, most of us would only want the assessment if we knew it’d validate us. That’s unlikely though.

The psychiatrist also talked about our E-mail to our nurse practitioner. We had written to him that we’re unsure whether we want to continue with our DBT skills training, because we fear we’ll need to make ourselves look better than we are. I’m not even sure what whoever wrote that E-mail meant by it, but I know change is scary.

The psychiatrist now proposed to give us a “break” from treatment. This’d mean our GP would handle our medications and we’d basically be discharged from the mental health team. We could still get some sessions with our nurse practitioner to help us create a good crisis prevention plan for our support staff.

Many of us have all sorts of mixed feelings about this. Some feel relief, while others feel fear. Some cling to the wish for a trauma-informed therapist. Particularly the littles wish to be validated. I don’t know though whether that needs to be by a trauma therapist. They have so far felt most validated by our intellectual disability agency staff, after all.

Mental Health Ramble

Posted on by Astrid

I want to write, but I’m feeling stuck. A thousand thoughts are going through my mind. I’m not even sure that I’m being myself as I write this. Who am I, anyway? I don’t know. I can pinpoint it fairly clearly when I’m in one of my ego states. When I’m not, I doubt everything.

I would’ve had DBT yesterday, but my nurse practitioner was off sick. The psychiatrist would be calling me, but when she did, I pushed the wrong button. She left a message saying she wanted to call me because my nurse practitioner is off sick, but also to discuss “how things are progressing”. I’m guessing she’ll tell me off for wanting to go into supported housing, for feeling happy in developmental disabilities services and for not being sure I feel mental health treatment is benefiting me.

Right now, I’m not sure I care. I’m not sure whether I want to go the route my psychiatrist is wanting me to go, which is do DBT for now and be put on the list for trauma diagnosis. I don’t even know for sure whether my trauma symptoms are severe enough to warrant treatment, or whether I want them to be. Usually whenever I doubt this, it’s a sign that some memory or new aspect of myself is surfacing. I have no idea this time.

I feel, above all, that what I need is safety. This means being assured that I get the support I need. I’m mot sure my psychiatrist is of that opinion too. She told me at our last meeting in early October, that she felt day activities were underserving me, not challenging me enough. I panicked, called my support coordinator, who called the consultant psychologist involved in my case. She then E-mailed my psychiatrist. Maybe the way I did it, it feels as though I’m trying to use the cosultant to tell my psychiatrist off. That wasn’t my intention.

That being said, I do feel much more comfotable with my support team from the intellectual disability agency than with my treatment team from mental health. I don’t know whether that means I’m too comfortable being taken care of. I don’t know whether I care.

Anyway, my psychiatrist will be calling me again on Tuesday. Then I’ll be at day activities, so if I feel distressed by something she says, I can go to one of the staff.

What’s Holding Me Back to Write from the Heart?

Posted on by Astrid

I have not written much over the past few days. It isn’t because I didn’t want to. In fact, I’ve been wanting to write a lot, but couldn’t find the right venue. I mean, if I want to write for this blog, the content has to be “blog-worthy”. Not because that was my original intent with this blog, but because I’ve become (too) focused on my audience.

“Blog-worthy”, in this respect, means being at least 300 words long, being well-constructed and not being too personal. I mean, yes, I write a lot of very personal posts by soe more general bloggers’ standards, but I still wish I could express myself more freely.

In particular, I wish I felt okay for all of the alters to write using their own names. I originally intended this blog specifically for that purpose, but I feel like I might attract negative feedback if I do this. I mean, dissociation is not your everyday mental illness.

That then has me gotten looking for private journaling apps on the iPhone and PC. I spent most of this afternoon downloading, trying and then deleting at least a dozen apps. None meet my needs. Honestly, what I’m really looking for is something that looks like WordPress but is completely private. Yes, I know I could create a protected blog, but that still feels “kind-of-public” to me.

Then again, is it truly the fear of exposing my thoughts to the public that holds me back? Or is it my inner critic holding me back regardless? I mean, I noticed an alter – a newly-emergent one -, trying to write to an E-mail list a few days ago, but she kept saying that she cannot be her.

Of course, an E-mail list still has an audience, but this was a DID list, so all members are supportive of alters posting. And yet, I feel weird. What it all boils down to, I think, is that I want people to know my thoughts, but I want people to be supportive even more. Then again, how can I elicit support if I don’t share?

So I guess from now on, I’ll try to let go of my “blog-worthiness” rule and try to write from the heart. Of course, there are still aspects of my life that I cannot share, but I cannot share those at all.

Preverbal Trauma

Posted on by Astrid

Today, I wrote in a Facebook group about preverbal trauma. I know for a fact that I endured a lot that could have caused PTSD from birth on. I was born prematurely, spent the first three months of my life in hospital and was hospitalized several more times before the age of five.

About seven or eight years ago, I started experiencing body memories that I immediately associated with a medical emergency that I endured at age four. At the time, my trachea closed up and I as a result had difficulty breathing. I never completely repressed that memory, always knew that it’s something that actually did happen.

So I wonder if I made said association because it makes more sense than connecting the body memory to preverbal trauma. I mean, preverbal trauma is very controversial, because people do not form that clear memories until the age of three. That doesn’t mean people cannot be affected by preverbal trauma. It just means the memory is hard to recover.

I have alters. About six years ago, an alter emerged that is constantly curled up in a fetal position. We don’t know more about her. A seven-year-old alter who also emerged around that same time talks about that alter as a baby in the incubator. Now of course babies in incubators are not in the fetal position, so yeah.

Still, it all makes me wonder whether I’m making all this trauma stuff up. I mean, yes, I was born prematurely. Yes, I spent three months in hospital and had repeated re-admissions before the age of five. But my parents say that until age seven, I was completely fine and carefree. I mean, it’s not like everyone who endured trauma develops PTSD. So could it be I’m just making this whole preverbal trauma thing up?

In a preemie parent support group, I asked whether anyone has experience with their child getting EMDR for medical trauma. I have always wondered whether EMDR could help me. It was recommended when I had just been diagnosed with dissociative identity disorder in 2010. Then I heard it’s not recommended unless you’re very stable otherwise. Well, the consultant I talked with on Monday said that’s no longer the case. So maybe I could benefit from it. Several parents responded about reading their child a “life story” about their birth and hospital stay while the psychologist did the EMDR. Since my parents aren’t very supportive, I cannot ask them to help me with this, but I could create my own life story based on what my alers tell me.

Five Years

Posted on by Astrid

Today marks five years since our DID diagnosis got removed and changed to BPD. I’m not sure how to feel about it. I mean, that diagnosis was most likely incorrect but so is the BPD (which later got downgraded to BPD traits, which I do think we have but then again who doesn’t?). I mean, we rarely if ever experience amnesia and don’t go around disclosing ourselves when it’s not safe, but we do clearly exist as multiple identities.

Besides, the therapist who diagnosed us with DID at least took us more seriously than any before or after her (except for maybe our current psychiatrist, whom we just came out to three weeks ago). She didn’t allow us to be out with the nursing staff, which was okay’ish with us, but she did allow all of us to talk to her and didn’t try to fit us in a therapeutic box. The therapist who changed our diagnosis to BPD did, mislabeling Jane as a “punitive parent” and telling her to go away.

We at one point insisted on getting formal testing for DID. The therapist administered the SCID-D (a structured interview for diagnosing dissociation) to us but never finished the report. I wish she had even if it showed we’re fake. I mean, we have a right to information, don’t we? She also never responded to our E-mail, once our diagnosis was changed, asking her whether she’d ever suspected BPD in us.

I feel really odd now. I don’t know where we’re headed with regards to our mental health treatment. It’s all so scary. What if we’re really all imaginary? Since it’s unlikely we’ll ever be diagnosed with a dissociative disorder or get related trauma treatment again, will we ever learn to not exist?

A while back, someone asked in an FB group what happens to those misdiagnosed with DID after they get de-diagnosed. Whether their parts vanish. I don’t know really what I hope happens to us. I mean, we’ve tried to hide for a long time after our diagnosis got changed, but it was unsuccessful. We’ve tried to identify with the natural/endogenic multiple community before, since we felt not having a diagnosis meant we shouldn’t intrude upon the DID community. That was unsuccessful too. Does the fact that we can’t hide successfully for a long time mean we’re real after all, or does it mean I’m just terribly stubborn? I initially wrote “we” instead of “I”, but of course if we’re fake, we are not we anymore and never have been.

#WeekendCoffeeShare (September 8, 2018)

Posted on by Astrid

This week, I’m once again joining in with Weekend Coffee Share. On the surface, I don’t have much to write about, but I’ll try anyway.

If we were having coffee, I’d ask you how you have been. It’s sometimes hard for me to remember this, but when I’m feeling like I’m now, I’d genuinely much rather hear about your day than share about mine. Since I don’t know who will be joining me for coffee, as this is just a writing exercise, this is rather fruitless though.

If we were having coffee, I’d try to share how off I’ve been feeling lately. Most people notice right away, but it’s hard for me to put my finger onto what is going on. I guess I may be in a prolonged freeze mode. This is one of Pete Walker’s four types of trauma responses and it describes a state of dissociation. I’m so disconnected from myself that I can’t even tell who I am right now. I mean, yes, I respond to the name given to me at birth, but I hardly connect that name, or any of y alters’ names, to my current experience.

I don’t know what triggered it. I’m not having flashbacks. I’m not even having memories that aren’t full-blown visual flashbacks. Rather, I retreat into my own inner world with a book. Currently, this is Where Has Mummy Gone? by Cathy Glass. This is a very sad foster care memoir. I know I’m supposed to feel sympathy for the child who is the main character in this memoir and on some level I do, but it’s all very distant.

If we were having coffee, I’d then chatter on about random happenings. I’d share that I did finally go on the elliptical yesterday evening after not having been on it in over a week. I’d share that we had pizza for dinner yesterday. It was salami day or so I’ve heard, so I had a delicious salami pizza.

If we were having coffee, ‘d tell you that yesterday marked 130 years since the first incubator was used for a baby. My mother posted that on my timeline on Facebook last night. Since I was born prematurely and spent time in an incubator myself, this is rather intriguing to me.

If we were having coffee, I’d try to round up the conversation then, because I feel my shoulder hurting badly, so I want to do some exercise.

How is your weekend going so far?

Years From Now

Posted on by Astrid

As regular readers of this blog know, I’m a fan of journal writing prompts. Today, I found a self-exploration journal on Amazon and, since it’s free, I didn’t hesitate to download it. It’s called The Self-Exploration Journal: 90 Days of Writing, Discovery and Reflection. The first prompt is to write down why you want to embark on this journey of self-discovery. I’m not even sure. I mean, I just write for the sake of writing. I don’t even commonly reread my blog entries, though I did often reread my diary entries when I still faithfully kept an offline diary in the first three years of secondary school. I loved that. Maybe I should make a habit out of rereading some of my blog entries too. But since I currently don’t, I don’t even know that blogging is going to help me discover myself.

I mean, who am I, myself? I see myself in so many fragmented aspects that I’m not even sure who “Astrid” is. All these aspects, parts or identities usually listen to that name, but even as I write this, I don’t feel “whole”. I’m just a part among parts that somehow, in an abstract kind of reality, make up the mind belonging to one body. We have just two hands, both of which we currently use for typing up this journal/blog entry. Which, I might say, is going nowhere.

The second question in the 90-day series asks me to write about how I want to look back on my life ten years from now. Well, I honestly have no idea. Four years ago, I wrote a lettr to my 38-year-old self. I think I may reread it today. Already nearly half of those ten years have passed, but I have no clue at the time what I dreamed about. I mean, three years ago, I did a post as if I was 79 already and looking back at the past fifty years. The only thing I remember that would-be-flashback including was that we’d still live in our current house. Now we’re not even three years on and my husband and I are already thinking of moving.

What does it say of me that I don’t envision that much progress even in fifty years? Does this lack of a truly progressive vision of the future impair my actual progress? Or is it the other way around? That I’ve learned not to expect positive change because the past taught me I’d always fail anyway?

The first time I did a “___ years from now” post was in September of 2006. A psychologist my staff were consulting had asked me where I saw myself in three years. There were, or so I thought, two possible scenarios: one in which I lived successfully fully independently or with just a person reading my mail once a week and was at university and the other in which I needed substantial support. I explicitly wrote that this “black” scenario didn’t have to mean I needed 24-hour care, but that I needed support beyond that which is normal for a blind person.

Three years later, in September of 2009, I had almost two years in a psychiatric hospital behind my belt, of which I’d spent sixteen months on a locked ward. I wrote a flashback then and remarked kind of cynically that stuff couldn’t get much worse than they were now in three more years, or I’d have to be in a homeless shelter or prison. Then, I reasoned, I wouldn’t have Internet access so the whole wide world wouldn’t know. As it turned out, in September of 2012, I was still on the same ward I was on in 2009.

I finally left the hospital in 2017 and live fairly independently with my husband. I guess at this point, I’m pretty content with my life. That doesn’t mean I have absolutley no dreams, but I must admit I don’t generally see these as realistic indeed.

Weekly Gratitude List (August 31, 2018) #TToT

Posted on by Astrid

It gets boring, but time definitely flies. Tomorrow it’ll be September already. Fortunately, the good weather isn’t fully over yet, as they’re saying Sunday and Monday it’ll be sunny and warm once again. I love that.

Since it’s Friday again, it’s time for my weekly gratitude list. I notice these have become somewhat of a chore, but I hope that by continuing with them, I’ll take care to appreciate the little things in life more.

1. The takeout roti my father-in-law bought for my husband and me on Sunday. Normally, we go for Chinese, which gets boring. This was a lot more delicious.

2. Several nice walks this week. I once again went for the long walk at day activities on Monday and also went for a walk with my support worker on Thursday morning.

3. Being nominated for my first blogging award on this blog. I was nomiated for one on my other blog about a year ago, but like I’ve said, I took that blog too seriously to do blog awards. I genuinely appreciated it this time.

4. Swimming on Tuesday. On MOnday, my staff at day activities decided to invite me to participate in the swimmin group, initially just for that week. It was fabulous! I really hope I can continue to go swimming, but a volunteer already offered to watch me if there are not as many staff people.

5. Being supported by a lot of people in the multiple community. I recently joined a group for those who don’t have full-blown dissociative identity disorder, because they either have alters but minimal amnesia (me) or have amnesia but their alters are not as formed. I don’t like labeling myself that much, but I do it for the sake of finding support. After all, when you’re multiple, it’s either trauma-based or endogenic (natural) and we’re definitely not endogenic. It feels weird to join groups for DID or other dissociative disorders when we don’t have that diagnosis anymore and are not really looking for it either, but we need the support somehow. Thankfully, the people in the dissociation group are very nice.

6. Starting back into adaptive horseback ridiing after the summer break. It was absolutely so relaxing. My horse, Angie, was more obedient and less lazy than she usually is.

7. Eating some fish this afternoon. Usually when my mother-in-law takes me to horseback riding and the pharmacy on every-other-Fridays, we go to the fish stand that’s near the pharmacy. They however were gone for a few weeks. Their fish isn’t great, but this time it was quite tasty and above all it was hot.

As usual, I’m linking up with Ten Things of Thankful.

Quote of the Day (August 30, 2018): Cultivating Mindfulness

Posted on by Astrid

“The best way to capture moments is to pay attention. This is how we cultivate mindfulness. Mindfulness means being awake. It means knowing what you are doing.” – Jon Kabat-Zinn

I had another session of dialectical behavior therapy with my nurse practitioner today. In it, we discussed the skill of participation, which essentially boils down to doing something with attention without constantly being aware of the fact that you’re doing it. This seems pretty contradictory to me, because how do you do something mindfully without constantly being aware of it?

In this repsect, this quote speaks to me. It describes mindfulness as a way of knowing what we’re doing and paying attention to it.

It also seems that this may be what Pete Walker means when he describes the flight-freeze continuum of healthy relating to self in his book Complex PTSD: From Surviving to Thriving. He says that the healthy middle between freeze and flight is the middle between doing and being. Freeze then is the state of constantly dissociating, daydreaming away time, while flight is the state of constant doing stuff, working time away. I tend to fall closer to the freeze end, while other people might lean closer to the flight end. Whenever I’m upset, I retreat into my own world. Someone who is a flight type would more go and do stuff, such as housekeeping, work, etc.

Kabat-Zinn in his quote says that mindfulness means being awake and knowing what we’re doing. It means not mindlessly staying busy to avoid hard feelings (flight), nor means it being disconnected from one’s surroundings (and oneself) to avoid hard feelings (freeze).

Now I seem to understand where the flight-freeze continuum also comes in handy in my DBT skills training. Flight then describes rational mind, not feeling anything because we’re busy doing (work, housekeeping, etc.). Freeze describes emotional mind, being stuck in the inability to do something about our experience. The middle ground in DBT is called Wise Mind.