Emotion Regulation Issues: Dealing with BPD Traits #AtoZChallenge

Posted on by Astrid

Welcome to day five in the #AtoZChallenge. When thinking of a topic for the letter E post, I was thinking of how popular yesterday’s post on depression had been and how it had helped destigmatize mental health. I thought of doing today’s post on another mental health topic. Emotion regulation disorder is the term sometimes used here in the Netherlands to describe a condition that’s still formally called borderline personality disorder. As BPD is neither borderline (bordering on what?) nor a personality disorder (in that there is very effective treatment for it), I think this is appropriate. Besides, emotion regulation disorder is a lot less stigmatizing of a word.

My husband asked me, after hearing what my first four posts had been about, whether I’d be making my letter E post about something positive. I said “No”, as mental illness isn’t generally seen as a positive thing. Indeed, I’m still feeling pretty depressed and this may be why I chose this topic. However, the stigma associated with mental illness can still be worse than the illness itself. If I can help remove a bit of that with this post, I’m happy.

I was diagnosed with borderline personality disorder in 2013. I didn’t like it. This diagnosis replaced two other conditions I’m pretty sure I do have as well, namely dissociative identity disorder (DID) and PTSD. I was told that BPD is a trauma-based condition too and that dissociation really runs on a spectrum from BPD to DID. This is true, but I still wasn’t happy about the diagnosis. I had a lot of internalized stigma about it. This wasn’t helped by my therapist, who pretty much assumed my BPD was causing me to make up the DID. Well, I’m not making it up.

My husband didn’t believe I could possibly have BPD. After all, borderlines are known for unstable relationships and he had been my first boyfriend. Then again, there are nine different criteria to BPD and one only has to meet five of them to qualify for a diagnosis. Symptoms I most definitely do have include an unstable self-image, dissociation and stress-related paranoia, fear of abandonment and self-harming and suicidal tendencies. I can also have bad anger issues and react impulsively. In fact, the only criterion I’m pretty sure of I don’t meet, is the one about unstable relationships. People who do meet this criterion, often engage in what is called “splitting” within the BPD community. They alternate heavily between idealizing and devaluing their favorite person (who can be a partner, but can also be a family member or even a therapist).

In 2016, my diagnosis was downgraded from full-fledged BPD to just BPD traits. I’m pretty sure I’d still meet the full criteria, though not as strongly as before maybe. It is common for BPD symptoms to lessen as a sufferer gets older.

I prefer to refer to my BPD traits as emotion regulation issues, like I said. Not only does this sound less stigmatizing, but it feels more true to what I experience. I do experience, after all, very strong emotional outbursts. These can be of anger, but more recently also sadness or fear. I also find it hard to distinguish emotions and tend to express every strong emotion as anger.

Like I said, BPD, unlike other personality disorders, is treatable. The most evidence-based treatment is dialectical behavior therapy (DBT). DBT combines cognitive behavioral strategies with mindfulness. I tried it last year, but was finding it hard to pay attention in therapy and carry over what I learned from the manual into real life. I do however still try to apply the skills.

#IWSG: The Ebb and Flow of My Writing

Posted on by Astrid
IWSG

This is going to be a quick post, as it’s already 9PM and I’m off to bed soon. I have to check in with the #IWSG community though. I did plan on writing, but then my time and energy got taken up by the A to Z Challenge. I don’t know how the other writers who participate in both, do it.

I wanted to touch on something I’ve discovered regarding my motivation for writing. At the beginning of each month, it’s usually much higher than at the end. Readers of my blog can see this by the number of blog posts I write per week.

I have yet to figure out what is causing this decline in motivation. Or is it inspiration? I don’t know. There are enough prompts and ideas to choose from to write about for each day of the month.

I noticed also that, when I started this blog, I had a lot more inspiration and motivation than I did after even a month. It can’t be because I touched on every topic I wanted to cover already, as I didn’t. But why then is it so? I am not going to answer this question right here, but this is something I need to think on in the coming month.

In contrast to this, I do manage to write something almost everyday. It just isn’t always blog-worthy. Or I think it isn’t. Which is strange, since, when starting this blog, I didn’t give blog-worthiness a thought. Well, now apparently I do.

Dealing with Some High School Memories

Posted on by Astrid

We are struggling quite a bit. We hardly know why, but yesterday, a memory appeared. It’s not like we weren’t aware of this having happened before, so it’s not a repressed memory. However, it still feels as though only certain insiders can “own” the memory, if this makes sense.

This is hard, because we got told last Thursday by our nurse practitioner that it’s good people aren’t validating our experience of dissociation. For example, they’re reminding us that the body is 32 and we’re all Astrid. That may be so, but it’s only getting us to further disconnect from ourselves.

He told us that being a child at heart is not wrong, but claiming to be a child is. Or something like that. He more or less told us to look beyond the emotional parts’ words to what was actually troubling us. For example, Jace saying she has to move out by age eighteen meant we’re afraid we won’t get long-term care funding. Fine by me but I think it’s not that simple. I think this may be an actual memory bothering Jace and it was just triggered by the long-term care stuff.

Anyway, yesterday evening we started experiencing high school memories. Our high school tutor was our safe person at the time. We trusted him more than we did our parents. Our parents weren’t okay with this. When in ninth grade, we had been struggling and our schoolwork was suffering. Our tutor asked us to tell him what was going on. We wrote it down. Then our tutor told our father, who worked at our school. He refused to disclose what we’d written though. I understand this, but it got our parents angry and led to an incident of bad mental abuse.

Anyway, like I said, this tutor was our safe person. He was the first one to know about our being multiple other than a handful of readers of my online diary at the time. He wasn’t impressed by it as much. In fact, he told us we’re just manipulative. This got us to go in denial and not tell anyone else.

It still upsets us that we could’ve had a chance for real help if we hadn’t been in denial at the time. I mean, the tutor told our first psychologist about our experience. This psychologist suspected DID, but we denied everything. It’s understandable, because we were still in somewhat of an unsafe situation at the time.

We trusted our high school tutor, but he betrayed our trust in some rather overt ways. He told our parents that we suspected we were on the autism spectrum. Not that there was no other way for them to find out, as we wrote about it in our public online diary. However, he told them that we’re a hypochondriac for it. In this sense, he was on our parents’ side. And yet, we didn’t see it.

Then again, is it okay for me to think in terms of being on someone’s side or not? I mean, our parents were supportive in some ways. Our mother was at least. Our father was and still is too self-absorbed to actually care about anything other than his intersts and opinions. It’s not black-or-white. People can be good and still do bad things. Or something like it.

A Time I Ignored My Intuition: Moving Institutions

Posted on by Astrid

I haven’t written at all this past week. It was an eventful week, but I feel reluctant to disclose details. I have also been feeling uninspired to write about anything that isn’t just a diary-style entry starting with the phrase “Today I did…”. Well, that’s not what feels right to me.

I was talking to my assigned day activities staff this afternoon. We were casually discussing places I’d lived in before and I mentioned having moved from one institution to another to be closer to my husband in 2013. That was a big mistake.

The memory came back again when I read a journaling prompt in one of my many collections of prompts. It asked me to reflect on a time I had ignored my gut feeling or intuition. This was a time I did. Let me share.

In late 2012, my husband and I had accepted a rental home in a town near Arnhem, Netherlands. I was at the time living in an institution in Nijmegen, about 30km away. There was a lot of turmoil going on about the unit I resided on. For example, there was talk of us moving to another building. We’d just moved from an old building to a newly-built one in September of 2012 and I didn’t like yet another move. Unless it was closer to my husband. So even when the plan for yet another move was canceled sometime in April or May of 2013, I still said I wanted to move to the other institution, which was in the town next to the town in which we’d rented our home.

I had an intake interview in June of 2013. The psychologist was quite mental if you ask me. I’d come from a unit with 24-hour care and he was expecting me to move into a house with a few other patients and staff dropping in once or twice a day. Well, no way! He said that’d be better preparation for my moving in with my husband than going to another unit with 24-hour care and the in-between unit was full. He gave me the choice though, but I had to be quick. It was Thursday and I was expected to move before the week-end, because if I waited till Monday, the bed on the 24-hour care unit may have been filled already.

I felt rather off, but I reasoned my feelings away. I wanted to be closer to my husband, after all, and I wanted to ultimately live with him. Or so I thought. So I moved the next day.

Let me explain that my staff at the ward in Nijmegen had been as supportive as psychiatric care staff can be. I mean, they were sure I needed a lot of support at least. They had denied me the opportunity to go into a housing unit for people with visual and intellectual impairments in 2011, but it takes a lot for a psychiatric professional to go beyond their expertise and see that a person might be best served in developmental disability services even if they have a high IQ.

The staff in the new institution were not so supportive. Even though they allowed me to stay there for nearly four years eventually, they were adamant that I go live with my husband and eventually kicked me out with almost no after care, reasoning that I had refused to go into any home with more care they’d offered. Which, frankly, was none.

Now, nearly two years into living with my husband, I”m facing the pain. I’m still feeling angry towards the staff at the last institution and regret that I decided to move. From now on, I’ll twust my gut feeling when something doesn’t sit right with me.

Things I Do at Day Activities

Posted on by Astrid

This is my third attempt at writing a blog post for today. I started writing a random ramble, then started sharing ways to relax. While writing about that, I noticed I was explaining all about the snoezelen® room at day activities. I then wanted to write more about things I do at day activities. So here goes.

Usually, I start the day with a cup of coffee. The staff drink coffee in the central area of the day center before the clients arrive, and since I usually arrive early, they offer me a cup too.

Then, when I go to my group’s room, the other clients arrive and the staff help them unzip their coats. They also read the other clients’ diary, in which their home staff write about them.

I usually do a table-based activity first. This involves sorting tasks, construction play, etc. I particularly enjoy shape-sorting activities.

At 9:30, the second staff for the day comes and we drink coffee. Then, we each go to the bathroom. After that, there are set activities for most mornings. On Monday, I go for a long walk with another group. At my group, the other clients play some games and do other table-based activities. They go for a short walk when the other group returns.

On Tuesday, I go swimming every other week. The day center’s people have the pool to themselves then and most clients have an assigned volunteer or staff to help them. The other week, a volunteer comes to our group and we run some errands.

On Wednesday, we have a cooking activity. For this, another volunteer comes. We generally do some really simple cooking. Since it’s a busy day, the staff really do most of the work. I feel sad that they don’t really involve us much. Of course, watching is cool too.

On Friday, we go to the marketplace. Each of us brings some money and we buy something that everyone likes. Sometimes, it’s fish, while other times it’s a bread roll, fruit or salad.

On each of these activities, the staff can’t take all of us. As such, we take turns going with one staff to do the activity, while the rest do table-based activities with the other staff.

Some people also love the snoezelen® or sensory room. I for one do. The sensory room has a water bed, but also a bubble unit, which is a water-filled unit which makes bubbly noises and has floaty objects in it that you can look at. There are also several tactile boards with all kinds of textures on it that you can explore.

Most people also love listening to music. On Wednesday afternoon, a music therapist comes to our group. I only attended this once, as I normally have the afternoon off on Wednesday, but I love it. The group also owns several tablets, a CD player and a TV to listen to music on or watch videos on.

I currently go to day activities two afternoons: Tuesday and Friday. On Tuesday, we have no set activity for the afternoon. This can get a bit boring, as staff usually spent most of the time writing in people’s diaries and doing administrative tasks. On Friday, I and two other clients go horseback riding with one staff.

At 2:30PM, we have a cup of coffee again, After that, most people hang out some and are getting ready for the bus home, even though we won’t be picked up till four o’clock. On Friday though, we have a dance at another group which everyone from the entire center is invited to.

There are four groups at the day center. My group is for the most severely intellectually disabled people. Another is for the elderly. Then there’s one for people with autism and others who need a lot of structure. This is the group who go for the long walk on Monday. The last group is for relatively capable people. They do kitchen-based tasks like loading the dishwasher. They also do creative activities.

Like I said, I’m in the group for severely intellectually disabled people, even though I’m not intellectually disabled. The reason is I need a lot of support and no pressure to achieve. I can visit other groups if I want to though.

#IWSG: Finding My Voice

Posted on by Astrid

Today, it is once again time to share our thoughts with the Insecure Writer’s Support Group (#IWSG). The optional question assigned for this month is to write about from whose perspective you like to write best. Since I rarely write fiction nowadays, my answer is simple: my own.

I didn’t do much blogging in the past month. Part of the reason is the need to remain silent about some recent occurrences in my life. This means some diary-style writing is out of the question right now. Unless, that is, I do it offline.

Which brings me to the fact that I rediscovered Dyrii, an app on my iPhone and now on my Mac too, which you can use for keeping a journal. It still needs a little getting used to on my part, but overall, I like it. It helps me find my voice again, even if it isn’t in public.

I seem to have been able to write some more again in the past week. It feels good. I always feel good when I write.

I am also seriously thinking of starting up my fiction writing again, even though I am told that it generally lacks imaginativeness. I will see if tomorrow, which is my day off from day activities, I can write some fictional piece again.

In other news, I got myself the Dictionary.com app on my iPhone. I am loving looking up new words and idioms. As you might know, English is my second language and half the words that I come across in word-of-the-day challenges, I do not know the meaning of. I’m told this isn’t so unusual and that I’d benefit more from learning idioms rather than vocabulary. I don’t care. It’s cool to learn either way.

#IWSG: Creative Outlets Besides Writing

Posted on by Astrid
IWSG

I have a ton of things I want to write about, but somehow I can’t get myself to actually write. I started trying to use my new Mac Saturday evening. So far, it works but is still a bit hard to use. The WordPress app for Mac isn’t available in the app store, so it is a pain to install. I’m just using my phone now rather than WordPress.com in Safari, because at least I know how to work this.

It’s time again for our Insecure Writer’s Support Group or #IWSG check-in. This month’s question is about creative outlets other than writing.

I must say I”m not terribly creative. I don’t do any artsy things and am no good at music either. No, not all blind people are musically talented! I tried my hand at learning to play the keyboards and guitar for a bit, but didn’t like either. Granted, my guitar lessons were while I was at summer camp in Russia and the instructor spoke Russian and English only. This was before I knew English, so it took me half an hour to figure out what he meant by the “strings”.

If we expand creativity a bit to include crafts, I have tried a ton of them. I started out trying to make cards in 2012, not realizing how inaccessible this craft is to blind people. I should’ve known, since the blindness agency used to offer card making courses but specifically to the partially sighted only.

Then I tried mixed media, which was similarly inaccessible. Then came polymer clay, which should be doable but not by me. I tried to learn to crochet and loom knit too.

Lastly, I tried soap and bath and body product making. I still love that craft and would someday like to pick it up again, but I can’t do it independently. This is when I realized that the problem may not be exclusively with my blindness, but my cerebral palsy affecting my fine motor skills too.

So in short, no, I don’t do any creative things other than write. But I’d love to learn.

Determined

Posted on by Astrid

I want to write so bad, but my shoulder is still hurting. Not as badly as it was, but there’s some kind of bulge on it that keeps acting up whenever I lift my arm up even slightly, as I do for typing. I am determined to beat this stupid thing though.

Determined. That’s Fandango’s word for FOWC today. I rarely participate in these one-word challenges, although I’m subscribed to most blogs that offer them, including Fandango’s. However, today’s word struck a chord.

I told my named support worker at day activities about my crisis of 2007. I realize I’ve never shared my life story on here yet, so some readers will not know what I’m talking about. Let me explain. In 2007, I was living independently and going to university. I had been forced to go that route after essentially being kicked out of an independence training home that I had attended because I’m blind. I had been diagnosed with autism just a few months prior. Neither autism nor blindness alone should keep someone from living independently and going to university, but the combination did cause me a lot of trouble. Within three months, I was in a suicidal crisis. I had to be admitted to the psych ward. Not because I wanted to per se, but because that was what I needed at that point.

Fast forward 9 1/2 years and I was kicked out of the psych unit again. Yes, I stayed in a psychiatric hospital for 9 1/2 years. Not because I wanted to, but because no other place wanted me. Those for people with just autism, couldn’t deal with my blindness and vice versa. There are places for people who are blind with multiple disabilities, but most of the clients going there have some type of intellectual disability. That was obviously not where I belong. Or was it?

I’ve now been living independently with my husband since May of 2017. Despite lots of support, it’s a struggle. I am surviving, but I’m barely living.

So I decided to apply for long-term care. Which had originally been determined to be best for me by the psychiatrist who admitted me to hospital in 2007. I am determineed that, if we stop looking at just my labels and start looking at me, we’ll find someplace for me.

Then again, is this determination? Am I not essentially underachieving if I admit I need 24-hour care? Or am I actually determined to follow my own path to happiness and the best possible quality of life?

My 2019 Word of the Year

Posted on by Astrid

It feels like forever since I last wrote, even though that was only last Friday. I don’t know whether that’s a good thing or a bad thing. I’ve been wanting to write a lot over the week-end and did in fact write some each day. Just not for my blog. Today, I am going to write a post I’ve been dreading writing, like each year. It is the post in which I announce my word for the year.

Now why is that so dreadful? Because I have a lot of trouble, and that seems to increase each year, choosing a word of the year. I feel like I need to focus on my word of the year, but then again that doesn’t seem to work. I mean, if life is a bunch of choices, focusing on my word for the year should make it happen. That just isn’t how it works, and I’m still undecided as to whether that’s because I’ve not focused on my word for the year enough or because of things outside of my control.

As such, this year, I am going to decide on a word that should be relatively easy to focus on. It shouldn’t be like a heavy weight on my shoulder, like “progress” or “be” were when I chose those words in previous years.

With no further ado, here’s my word for the year 2019: CHERISH.

The word “cherish” was suggested to me by someone in a trauma self-help group. I had wanted to choose words like “self-care” or “nurture”, except that I’d already had those as words of the year previously.

In the year 2019, I want to cherish myself. This means, according to the dictionary, to hold dear, to show loving affection. I want to be kind and loving towards myself. It also means something akin to “hold onto”. In this respect, I want to hold onto life. Because of that, I hope this year I won’t be acting too impulsively.

I also want to cherish the people who are important to me, most notably my husband. In the process of applying for long-term care, it’s sometimes felt as though I was abandoning him. That isn’t my intention. I want to remain with my husband for life. As such, if and when I go into supported housing, I want to make the most out of the time I’m going to spend with my husband. Until this happens, I’ll also hopefully be able to show lots of affection towards him.

What is your word of the year?

Blogging

Posted on by Astrid

I am once again joining in with #JusJoJan. Yesterday I did write, of course, but I didn’t link up, since my post wasn’t for the prompt. Today’s prompt is to share about your blogging endeavors. Why did you start blogging? How did you come up with your theme? How has blogging affected your life? And so on.

I probably shared this on my older blogs a couple of times already, but I don’t think I jotted about my blogging on here. I was probably destined to be a blogger, as even as a young teen in the late 1990s, I longed for someone to read what I’d written. Not my parents, of course, but I was pretty open about my writing otherwise. My father at one point joked that I showed my new best friend my diary the first time she visited me. I didn’t, but I did show her some personal writings of mine. Those got her to feel pity for me. The friendship wasn’t healthy to begin with, as I was needy and clingy. The friendship ended not even half a year later. Today, I won’t go into that. It only serves to prove that I was very open in my writing from an early age on.

I got a computer with Internet access in May of 2002, when I was fifteen. Within six months of that, I’d started an online diary. The contents of that diary, unlike those of many of my later attempts at keeping a blog, are still available online. Their original location, on DiaryLand, might even still exist.

In February of 2007, I created my WordPress account and moved the contents of my diary to my first legitimate blog. This diary had over the years started to contain some more essay-like posts besides the diary-style navel-gazing. However, with DiaryLand, there was no way of organizing your posts by categories or tags. My parents criticized me for being too personal in my diary. I didn’t intend on becoming less so, but now I could put all my navel-gazing into a category called “Personal” for people to skip.

I have had three blogs (if I include this one) that were lasting. First, I had said blog moved from DiaryLand. Then I had Blogging Astrid, which I originally intended to keep alongside this blog. That didn’t work.

A Multitude of Musings, the blog you are now reading, is, in fact, a restart of another relatively long-lasting blog I wrote in 2011. I am a bit sad that I deleted its content years ago, but I can’t undo that. Still, my stats say the day I had the most views was in 2011.

Blogging has had a huge impact on my life. My husband checked out my blog – the one that had been moved from DiaryLand – before he asked to meet me in real life. This meant he already knew me pretty well before we’d first met. In this sense, my marriage makes up for the friendship I wrote about above, as my husband chooses to stick by me despite my openness. I don’t encourage him to read my blog now, but if he wants to, he can. He’s occasionally been cross with me for sharing something about him. I try only to share the positive now.

Why did you decide to start blogging? How has blogging impacted your life?