Dream #SoCS

I have a lot of vivid dreams. They suck at times. Sometimes they’re good dreams and I”m sad that they’re just dreams, but most times, they’re really distressing dreams. A few weeks ago, I dreamt that my husband was going to divorce me or I was going to divorce him because somehow (I can’t remember the details) my past identifying as a lesbian was getting in the way. Either I decided I was a lesbian after all or my husband got tired of me having identified as one. Or something. That dream had me distressed for days because I thought it somehow meant something. Like I was unconsciously unfaithful to my husband, which I have no intention of ever being.

Other times, I dream that I’m kicked out of or leaving the care facility. This also scares me, because I am to be very honest not 100% sure it was the right choice to go into it. I mean, yes, it’s much better for my self-care, but it does mean my marriage gets strained by my husband and me not being able to see each other as often as we’d like to or as we used to.

Last Thursday, I was in a bit of a crisis. I had been in the snoezelen® room for two hours on Thursday afternoon and as a result, couldn’t sleep. I also worried about my inability to travel to my husband each week by paratransit due to the limits on how much you can use that service. The fact that I had been in the snoezelen® room for so long and this is not the first time and I’m not sure what I can do during the day, made me think back to my old day activities. Then the fact that I cannot travel to my husband by paratransit even coupled with trains each week, made me think of leaving the facility and going back to live with him. I know this would be unwise in the long run, if for no other reason then because my spot at the old day center has been filled up already.

I E-mailed my staff at the old day center. Then I ran off. I made it to the bottom of the stairs, near the fire exit, before I realized I didn’t really want to run off. By then, the sleepover staff had heard me and called the night staff. She comforted me and I was able to go back to sleep. Back to more dreaming.

I am linking up with #SoCS.

Nuts! #SoCS

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.

Blue to the Blind #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “blue”. The idea is to write about the firsst blue object you see when sitting down to write your post. Well, I am blind, so I don’t see anything blue as I sit here to write. I could be writing about things I know to be blue. The sky is blue. The ocean is blue. Or at least, they’re both seen as blue due to the sun’s reflection on them, or something.

I could be writing about my sensory cat, the soft toy I got for my 31st birthday from my sister. I think the cat is blue. It is filled with lavender, which I know is kind of blue too.

How would I describe blue to a person who’s never seen it? I can, at least, having had color perception as a child, still imagine blue in my mind’s eye. Someone born totally blind can’t. I once wrote a post describing the color green to blind people on my old blog. This was a journaling prompt, just so you know that no actual blind person asked me to describe the color green. Which, I should say, I really can’t.

I mean, synesthesia may be able to help. Blue is a “cool” color. It is the color of the number three in my synesthetic perception. Then again, even with synesthesia, everyone’s perception is different, so that wouldn’t make sense.

Interestingly, there are no blue letters in the word “blue” and the overarching color in the word is orange for the letter B.

I wonder now, does my synesthesia always make words look like the color associated with their first letter. I’m not sure, but the word “green”, even though the two E’s are green, isn’t really green overall. It’s more red with a touch of green. The G is red.

Mondays are green too, even though the word “Monday” has no green letters in it. Fridays are blue and yet again, there’s no blue letters in the word. Isn’t that fascinating?

Co-Consciousness #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Co-“. I immediately thought of co-consciousness. This is a term in the DID (dissociative identity disorder) / multiple personality community referring to more than one personality sharing memories or other information. It is often desired as a goal in treatment. Another one is cooperation, in which alters are able to work together for the betterment of the entire system of personalities and the body.

Co-consciousness is often implied to mean a system has less severe dissociation. I mean, since amnesia (inability to recall important information) is a criterion for DID, technicallyy those who are fully co-conscious cannot be diagnosed with DID. Then again, there are a lot of degrees of amnesia. For example, one is time loss, where someone “wakes up” to discover their alter has done something they have no recollection of. However, identity amnesia also counts, where a person forgets their name, age, etc. Loss of skills also counts, where a person cannot for example ride a bicycle or car when a young alter is out in the body.

There is also this phenomenon called emotional amnesia. I have yet to find out more about it, as it seems to be very common in our experience. For example, last Wednesday, we were aggressive. Though I do know that we kicked a wall, I do not actually remember it or the feeling attached to it. That belongs to one of the other personalities.

We do aim to share information amongst ourselves. However, usually we cannot all be present at the same time. That is, of course we can, in that we’re all in this body and when for example I give someone my hands, another alter cannot be simultaneously holding our hands over our ears. That’s what our psychiatrist explained last year and it was so fundamentally new to us!

Co-consciousness and cooperation can be an end goal in DID treatment, but some systems choose to merge or integrate. There are also different degrees of integration or so I understand. I recently joined a support group on Facebook specifically for DID systems looking to integrate, even though that’s always been a very scary idea to most of us. It feels as though we’re getting rid of some of us, when really all of us are part of this system, inhabit this body.

As a side note, I can totally understand most regular #SoCS readers cannot fathom the concepts I just wrote about. I was even once told by people in a Dutch DID community that I knew too much for someone who’d only been diagnosed for a few months, when I mentioned the term “co-consciousness”. Clearly those people had never ventured out into the English-speaking DID community.

Where #SoCS

Where am I going? Where am I even right now? Yes, I am currently at home, writing this blog post. I go to day activities four days a week and spend the rest of the time at home or at my in-laws. I don’t blog nearly as much during the time I’m home as I’d want to.

I know I’m in the process of going into long-term care. It is an incredibly slow-moving process, so I can’t write much about it.

I have developed an interest in reading. I want to be blogging more about books. Not that I want to be a “book blogger”. I still want this blog to remain as eclectic as it has been so far.

But I want to do something with my life other than being in the process of going into long-term care. I don’t mean I want to work a real job or go back to university. Or maybe I do, but I know I can’t. Then at least reading should satisfy that need for doing something with my life.

Maybe I’ll someday pick up crafting again. Soap making or jewelry-making. I tried to make my own melt and pour soap at day activities again last Monday. It went okay. I needed a doable amount of help. Same probably with jewelry-making. At least with making the simple string necklaces I am used to making. They aren’t even bad. But they aren’t something I can blog about.

And as it seems, I’ve dedicated everything I do in life to the purpose of blogging about it. Well, not exactly. Of course I’m not going into long-term care to have a more interesting life to blog about. That seems like something my parents would think, since I did at one point feel like becoming a mother mostly for that purpose.

I can have a much more interesting life if I just live. And if I find joy in what I do. That way, I can help spread positivity. And I hope that by sharing where I’m going with a positive attitude, I can have an influence on the world, or at least the WordPress community. I don’t need to be an “influencer” – such an overused word – to be of influence. I just need to be me.

I am writing this post for Stream of Consciousness Saturday. The prompt this week is “Where”.

Four #SoCS

My husband and I like the number four. The reason is that the Dutch word for four, “vier”, is also the Dutch word for “celebrate”. One day when my then boyfriend and I were walking in a forest near his home, we went up a hill and he proposed we celebrate getting on top of the hill with a kiss. A little later, we saw the number four written on the path or something and he said four means to celebrate with a kiss. This is how we ended up making up the word “fouring” for kissing.

We played a lot of card games back then. This was in 2008, when I was still inpatient on the locked psych ward. We didn’t really know what else to do. So everytime a four came up in our card games, one of us would say that meant we had to kiss.

We got married on the day we knew each other four years exactly. Actually, the wedding ceremony was at 3PM. That had been the time of our first date too. It wasn’t because we selected the time, but it was quite cool anyway.

I like to remind myself of these beautiful moments. My husband gave me this little bride and groom that had been on top of our wedding cake. He dug it up from the attic the day after we had a little argument last week about me thinking I might go into supported housing nearly two hours from him. I liked the reminder. I love my husband! I don’t want to ever leave him. I don’t want to live too far from him. My marriage trumps my need for good care.

This post was written for Stream of Consciousness Saturday.

Socially Awkward #SoCS

I am socially awkward. Before I was diagnosed with autism, this was how I saw myself. I even had an E-mail group on Yahoo! Groups titled socially_awkward. This was for adults and teens with social issues of any kind.

Indeed, the main symptom of autism is still seen as social communicative difficulties. I do have them, mind you, but I don’t see them as my main symptom of autism. My main symptom is overload, both cognitive and sensory.

Then again, like I said, I do have issues with social interaction. I haven’t had a friend other than my husband since special education junior high in 1999. I tended often to be too clingy. In this sense, I guess I exhibited the “acctive but odd” style of social interaction that is often exhibited by males on the autism spectrum and is seen as the least impaired style, common in those diagnosed with Asperger’s Syndrome. Yet I do experience severe impairments in other areas.

When I was older, I tended to exhibit a more passive interaction style. Then again, when at meetings, I can still be dominating. This is probably why the people in the Dutch DID group decided I wasn’t safe. They kicked me out, officially because they believed I didn’t have DID or had imagined it, but they cited as reasons for this that I talked bookish about my issues. Well duh, that’s typical of autistic active-but-odd interaction.

But back to how mild or severe my autism is in terms of social interaction or other symptoms. I was diagnosed as ASD level 1 under DSM-5, so the mildest severity level. The reason is probably that I can hold down relatively normal-sounding conversations in structured settings and with people of my intelligence level. At least if they’re focused on me, which diagnostic interviews usually are. I cannot keep up a conversation about someone else for long. This may be why some people, including my parents, used to see me as selfish. I tend to want to dominate or talk about myself. That is, I don’t really want to, but it is the most natural.

In the second symptom category of autism, which is restricted and repetitive behaviors, I was also diagnosed as level 1. I disagree, particularly because sensory issues have been added to the criteria and I’m severely impaired with regard to that. I stim all the freakin’ time, for example. I feel I should definitely be level 2 on this symptom category.

This post is part of #SoCS, for which the prompt this week is “social”.

Fairy

Fairy. I have always identified with this word. Or elf. Or changeling. The mythology of fairies taking human children and replacing them with one of their own, a changeling, has always spoken to me. It is a common early explanation of autism in the centuries prior to Leo Kanner and Hans Asperger. Obviously, I don’t agree with this, but I do understand it.

When Elena, one of my most spiritual alters, first emerged, she didn’t see herself as entirely human. She was the first to claim a fairy, elf or changeling identity. ChangelingGirl is one of my most commonly-used nicknames on bulletin boards.

I still like the idea that I have some spiritual aspect to myself. I don’t fully believe in Indigo children or the like. Besides, the theory of Indigo children is rooted in racism, usually favoring White children over those of color. However, somehow, there is some appeal to it. I do believe everyone has some spiritual aspect to them though.

When the body was a teen and Elena was most prominent, we had these weird superstitious rituals. We would’ve been open to pendulums and the like if we’d known about them at the time. More recently, when we did know about alternative stuff like this, I’ve tried to explore the tarot. I have several tarot apps on my phone. Of course, they’re marketed as for entertainment only. I like to use them to inspire my self-reflection. I don’t care that there’s no scientific proof.

This stream-of-consciousness piece was inspired by today’s word of the day challenge.

Silence #SoCS

#SoCS Badge

I read Linda’s prompt for Stream of Consciousness Saturday (#SoCS) almost every week, but I’m not often inspired to write something for the topic. Today though, the theme is “silence/silent” and I was immediately reminded of something. As a teen, I would often go silent or “locked up inside”. I couldn’t speak. This would last for minutes to sometimes an hour. It was related to stress. I would often fall silent when talking to my tutor. He was a kind man, but he acted more like a counselor than a teacher and I couldn’t cope with his questions.

At one point, this tutor had decided he could no longer help me and he was looking for a psychologist to refer me to. He said this shrink would have to be very intelligent, because so was I. He added that he felt I was manipulating with my silence. Well I wasn’t. I was scared.

I learned when I was around seventeen about selective mutism. This is a condition that’s related to social anxiety, in which children (usually preschoolers or a little older) can speak, but won’t in certain situations, such as at school. The diagnosis is not to be made in a person who has autism, unless it is very clear that the symptoms are not merely due to autism. I was at the time not diagnosed with autism, though I was self-diagnosed. I joined support groups for parents of kids with selective mutism anyway. That’s where I learned the expression “locked up inside”.

I rarely have nonverbal episodes like this now, but I still do on occasion. Usually in this situation, a younger part is trying to come forward. I can often hear chatter in my head, but it somehow won’t cross my lips.

This situation is different from going “blank” inside, when I can still function but seem not to have any thoughts in my mind, or am detached from them. These moments usually are a lot briefer, lasting from seconds to minutes. They are also related to dissociation, like “zoning out” or something.

The tutor who witnessed most of my nonverbal episodes, indeed eventually referred me to a psychologist with the blindness rehabilitation center. Said psychologist had been educated in the Rogerian school, which is not really suited if the client is nonverbal for the most part, as I was at the time, at leasst in session. I continued to experience these nonverbal episodes for years when seeking mental health help. Now I am thankful I can sometimes talk openly in session. Not always or often, but sometimes.

It helps that my nurse practitioner asks the right questions. He phoned me yesterday for a check-in. He asked directly about possible suicidal thoughts, so I was able to be honest and say I had them, but not as badly as I’d expected given the latest in my long-term care application. I’m mostly glad I have him.

Celexa #SoCS

Today’s prompt for #SoCS is “cele”. Choose a word that starts with it and go from there. I initially chose “celebrate”, but I got stuck before I even introduced my topic. Then it hit me, I’d have to choose another word: Celexa. I bet this isn’t as common a choice as “celebrate”, which I’ve seen with at least one other blogger.

Celexa is the antidepressant I’ve taken for over eight years and counting. Its generic name is citalopram. It is a selective serotonin reuptake inhibitor (SSRI), the most commonly used type of antidepressant. It is known to help with both depression and some with obsessive and compulsive behaviors. Not that I have those a lot, but I do suffer with depression quite a bit.

That being said, I hadn’t even been diagnosed with depression when I was first put on this medication. It was used as an adjuvant to my antipsychotic, Abilify, when two increases in the dose didn’t calm my anxiety-induced irritability.

Years later, I was diagnosed with depression. This gave me the courage to finally ask for a dose increas of my Celexa. I had already had five dose increases in my Abilify and was at the highest dose, but no-one bothered to look beyond my irritability anymore. In fact, I am not sure the psychiatrist who initially put me on Celexa did.

In May of 2018, I got put on my current dose of 40mg. This is so far working quite well. I mean, even with the bad news I received this past week – and trust me, it was very bad, distressing news -, I am not falling into the pit of depression. I’m pretty sure that without my high dose of Celexa, I’d have spiraled out of control. And I don’t need that happening if I want the situation, which the bad news was about, to work out.