Fidgeting

A few months ago, one of the staff at my day activities showed me a fidget spinner. I’d never seen one before, although I’d heard of it, of course. It was a little disappointing, to be honest. I mean, yes, you can fidget with it, but it doesn’t have as many features as some of the other toys at day activities. I didn’t really understand the hype.

Last week, the things my assigned staff had ordered for me to play with, came in the mail. There was a deck of cards to play games with, a set of dominoes, but also a fidget toy. This one had a lot more buttons and things.

I often love to fidget, but not necessarily with standard fidget toys. I have a set of makeup brushes at day activities that I like to stroke.

Then again, my main stim (the autistic term for fidgeting activity) is hair twirling. I remember my second autism diagnostician telling me I really needed to unlearn it, as it was a “serious social handicap”. I was at the time in my first month of my psychiatric hospitalization for suicidal ideation, so even if it were a serious social handicap, I had other things to worry about. Turns out my parents and said diagnostician are the only people truly offended by this behavior.

Speaking of which, everyone stims. I have mentioned this a few times before but I remember one day sitting in on a demonstration some social services students were giving of their work. The student pretending to be the social services person was constantly clicking his pen when talking to the client-student. I thought this was odd, but no-one else noticed.

Still, I may want to get myself a stim toy to replace the hair twirling with. I saw some on Stimtastic.com that I may love, but the shipping cost from the United States to here holds me back from ordering anything.

Linking up with today’s Daily Inkling.

Jade

We don’t have an alter named Jade. We do have one named Jane, one named Janita and one named Jace (short for Jaclyn). But we have no Jade. Then again, we love jade.

Jade is a beautiful green gemstone. At least, that’s the color we know. There are also creamy white and blue jades. We had at least one, a green jade, in our gemstone collection, I believe.

It is supposed to be a protective stone, in terms of crystal healing. I’m not sure I believe in crystal healing, but to some extent, I guess I do. Jade is supposed to promote self-sufficiency. In that sense, I guess our alter named Jane would love it as her stone.

When I look at the supposed benefits of jade, I see it also promotes balance, harmony and moderation. To me, this signifies that it could be an especially useful stone for us.

It isn’t specifically suited to our Zodiac sign. That is, it is suited to Libra, which we are supposed to be if you take our due date as our birth date. Which I have no idea whether any astrologers even do. I guess not. Our regular Zodiac sign is Cancer.

Jade is connected to the heart chakra. The heart chakra’s color is green. At least, when I did a guided color meditation using the chakras, I was told to envision the heart chakra as green. I wonder whether there’s any connection between the main colors of gemstones and what chakras they’re most related to.

Synesthetically, the word “jade” is also green. Three out of the four letters are green and the overarching color of the word is an emerald green. I truly think it’s amazing!

Linking up with #JusJoJan, for which the prompt today is “jade”. I’m not sure I’m allowed to link up, since I didn’t previously participate this year, but oh well.

What a Year! #SoCS

SoCS Badge 2019-2020

What a year it’s been! It had a lot of ups and some really deep downs too. I will post a year in review sometime in the next few days, as I can’t do them in stream of consciousness form. However, today I already want to say that this year was huge. Really, I’m still struggling to grasp that my twelve-year-old wish to find a suitable care facility finally came true.

I’m not sure what else I can say about this year. I mean, the whole year has been filled with first applying for long-term care funding. Then it was denied and I had to keep quiet on my blog and social media about it, in case someone from the funding agency would find out and use my writing against me. I still wonder whether the funding people might’ve read that one blog post I wrote on June 3. It was essentially a suicide letter in disguise. I mean, yes, it was positively worded, as a letter from myself in 2021, when everything would be okay and I would be in supported housing. However, it was clear to anyone reading between the lines that I was in a very dark place. The next day, my appeal was granted and funding approved.

Then I had to wait for another two months to find out I was accepted into the place I wanted to go into. It was the second care facility we’d been checking out. The other one was closer to my old home (and is also closer to our current home), but the vacant bed had been filled up by the time my funding was approved. I had my doubts about that place already, as I heard at my day center that staffing was cut at the day center people from there went to. It would’ve been nice if I could live in that facility, at least in that it’s closer to our home, but it works out now too.

I had lost hope again by the day the care consultant for my current care facility called my support coordinator to inform her that I’d been accepted. No depressing blog posts this time though. This was August 20. On September 23, I moved in. Wow, that’s already been three months!

I feel calm now. Calmer than I’ve felt in a long time. Not just today, but in general. Of course, I still get frustrated when my computer doesn’t do what I want, when I don’t understand a social situation or when I need to clean up a mess I created and don’t know where to start. I still have very poor distress tolerance and that’s unlikely to change anytime soon. I still find that everyday life takes a lot of energy. However, emotionally speaking, I feel better. I don’t experience nearly the level of irritability I used to. More importantly though, my post-traumatic symptoms seem to have lessened. Yes, I’m still dissociative, but I don’t experience nearly the amount of flashbacks I’d experienced before.

For 2020, I really hope to be able to be more alert. That probably requires me decreasing my antipsychotic dose, which is a goal I have anyway. I want to experience the full range of emotions more. After all, now that I’m not overcome with emotional flashbacks that often anymore, I want to open up my mind to what life has to offer.

I’m linking up with #SoCS.

Key #SoCS

I have a key to my room on a keychain. I would originally get a key to the particular home I live in in the care facility. I ultimately didn’t end up getting one. This may be because there’s not been a need for it. I mean, I can’t go to day activities or whatever on my own anyway.

Another reason may be the fact that I ran off several times. The unit is semi-locked, in that you need to turn a particular key to be able to open the door to go out of the house. The other clients can’t work this key, so are in a minor way prevented from leaving the home.

I, however, can work the key. I didn’t know I could until one day in late October, I was in a crisis and needed to find staff. There is no-one on my floor from 10:15PM on, but there are call buttons and listen-in systems and such for people to call the night staff, who is responsible for the entire facility. Anyway, I tried to find help that particular time.

Another time, around three weeks ago, I ran off because my flight response kicked in. I worked the key again and let myself out.

After this, it’s been discussed to remove the key from the lock, so that staff need to open the door with their own keys and I won’t be able to elope on my own. So far, that action hasn’t been taken, presumably because the measure would be just for me (since no other client can work the key anyway). They probably think I’m responsible enough (or should be) to handle this freedom. I’m not sure how I feel about it.

I do also have a key to my husband’s and my house. The reason for this is more symbolic, as I never go to this house on my own. However, I like it this way.

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

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.