My Perfect Lover

Posted on by Astrid

I think my husband is perfect. He is the ever-most-beautifullest, ever-most-lovablest
person in the world. That’s why I chose him as my lover.

My husband and I can finish each other’s sentences and it doesn’t get annoying. Or sometimes it does. Then we say “banana spider” and the other knows we’ve bored them out of their mind.

We joke that, when we get old and suffer with dementia, only the two of us will still understand each other, since we have so many special phrases and words between the two of us. At least I hope we’ll have something to laugh at ourselves about then.

Honestly, it’s too bad that my blog is in English and my husband and I communicate primarily in Dutch. After all, our expressions sound even better (or should I say even weirder?) when written or spoken in our native language.

Written for Twiglet #257: “Even Better” and FOWC: “Lover”.

Basic Mistrust

Posted on by Astrid

I have been compelled to read up on emotional and psychosocial development. One theory is Erik Erikson’s theory, which states that, at each different stage in life (from infancy to old age), a particular conflict is present. In infancy and early toddlerhood, this conflict is basic trust vs. mistrust.

I initially thought that this stage corresponds pretty much to the first adaptation phase in attachment theory, which takes place between birth and age six months. When I checked it though, it includes this stage as well as the first socialization phase, age six to eighteen months. This may be one reason why I relate strongly to basic mistrust even though, in attachment theory terms, I function in most areas consistent with the first socialization phase.

One thing I’m facing lately is a chronic feeling of anxiety and distrust. In my care plan, my emotional development is outlined and in the fear domain, I am said to function at an age comparable to somewhere between zero and eighteen months. This includes all of Erikson’s first stage of psychosocial development. By contrast, it encompasses both the first adaptation and first socialization phase of attachment development. The reason my development in this area isn’t pinpointed to either of these two phases, is that I experience both basic fear (consistent with the first adaptation phase) and strong separation anxiety (consistent with the first socialization phase). Apparently, a baby under six months cannot yet express separation anxiety.

I have little idea why I might experience such strong anxiety, as in, what in my early development contributed to it. I mean, my parents claim I didn’t have these issues until I started to lose my eyesight at age seven. Seven is another important age in both cognitive and psychosocial development, but I don’t think that one is particularly important in my life. The earlier stages seem to make far more sense to me.

Of course, I do know that I probably didn’t have optimal care in my early life. This isn’t anyone’s fault. I was, after all, born prematurely and spent the first three months of my life in hospital. Though my parents visited me often, I don’t think I could rely upon them for meeting my every basic need. After all, they cannot possibly have been in my proximity 24/7, like the mother of a typically-developing child usually is at least for the first few weeks to months. My nurses must’ve provided me feeding and comfort at least part of the time.

As for affection, I have absolutely no idea. NICU nurses aren’t likely to be able to provide any significant level of affection to a baby at all, but I guess my parents would’ve made up for that. I went into this when discussing mother as source and mother as place of attachment. The truth is, I honestly mostly rely on my current feelings to guide my ideas. I, after all, don’t have many early memories of affection. My first memory related to it is from age four or five and it involves my mother using a nickname for me that referred to her needing to be at my side all the time. Then again, most people don’t have many early memories at all and remembering is still a form of reconstruction. In other words, because I experience a lot of basic mistrust now as an adult, it is easier for me to remember the memories that point to this.

This post was inspired by Fandango’s one-word challenge (#FOWC), the word for today being “Basic”.

Not Their Baby Anymore

Posted on by Astrid

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

#FOWC: Euphoric

Posted on by Astrid

I haven’t felt really happy for longer than a few minutes at a time in a long while. I mean, yes, sometimes I laugh out loud and feel pretty good for a few moments. Overall though, I feel irritable.

I have never experienced an euphoric mood as far as I know. Then again, in mental health, euphoria isn’t seen as something positive. It is one of the manifestations of the (hypo)manic phase of bipolar disorder. The other, dysphoria, is not as commonly recognized as a bipolar or mood disorder phase.

I’m not bipolar. I never experienced mania or even hypomania. I do however experience dysphoric symptoms. In fact, I’m almost always irritable.

Back in the day when the DSM-5 was being drafted, the term for what is now called disruptive mood dysregulation disorder, was temper dysregulation disorder with dysphoria. Neither term feels right to me, as someone who may’ve been diagnosed with DMDD as a child had it existed in the mid-1990s. I feel mood dysregulation disorder with dysphoria would be a better name. I mean, yes, of course these kids are disruptive, but the focus should be on their unstable mood. DMDD is characterized by the occurrence of frequent mood outbursts combined with a generally irritable mood even when the child isn’t experiencing dysregulation.

Thankfully, irritability was added to depression’s mood criterion in DSM-5 too. Before then, it was only a criterion in children and adolescents. I, however, have always experienced dysphoric depression. In fact, I’m pretty sure I’m diagnosable with persistent depressive disorder.

This is one reason I might want to experience a bit of an euphoric mood at times. Maybe I do get it, but usually it happens at an inconvenient time. I mean, I occasionally experience an extreme flow of ideas combined with an urge to act on them. Usually this happens during a night I cannot sleep though, so I cannot act out my impulses immediately. Then often the next day I’m back to my usual, irritable and slightly depressed self. Even though I know that it’s not an entirely positive thing, I wish I experienced euphoria for a longer while at times.

Another Crisis

Posted on by Astrid

As those who’ve been following along with my writing will know, I was in a bit of a crisis on Monday. Tuesday and yesterday were better, but today was bad again.

It started out with a horrible nightmare last night. I still can’t shake the thought that I’ll be kicked out of the care facility sooner or later and that was what the nightmare was about. I woke up all sweaty and fearful. I called the night staff to calm me down.

Then by mid-morning, I felt rather insecure. My day activities group is divided into two subgroups. There are three full-day staff for these two subgroups combined, plus one staff who has the short 10AM-2PM shift. Today, one of the three staff who would otherwise stay the entire day, had the short shift too. I didn’t mind as much, as still each subgroup would have one staff for the full day. Then one of the regular staff, who would stay the full day, had to attend to a client one-on-one. The would-be third full shift was a sub, so she needed help doing lunch. So at the end, my full-day staff ended up helping her in the other room and the short-shift staff was attending to my subgroup on her own. She had to help people get around, to the bathroom, etc., too, so I was feeling rather left out. Everything went a little chaotic and that led me to enter the orange phase of crisis prevention.

There are three or four phases: green for adequate coping, yellow for mild distress (this one is sometimes left out), orange for serious distress and red for crisis. I was eventually able to go back to yellow as lunch was served and I ate.

Then I wanted to go into the snoezelen® room to further calm down. However, the music, though it was my favorite calming record, was way too loud. After some time, I ended up having a severe meltdown. I wasn’t able to calm down once back at my group.

In the end, I decided to take a PRN lorazepam and go back to the home to lie on my bed. I slept for two hours straight. Now I’m back to green again.

I’m joining in with #FOWC, for which the prompt today is “Crisis”. The prompt couldn’t have come at a more appropriate time.

#FOWC: Diet

Posted on by Astrid

Today’s Prompt for #FOWC is diet. I have no experience following any diet. Not even a “No-Diet” diet such as Slimming World. I know, I do need to lose weight. I do need to moderate my food intake. I do know that Slimming World, Weight Watchers and the like can help some stick to a habit of moderation where it comes to food. However, I’m not sure I’m ready to stick to the diet.

I really want to stick to a plan where it comes to food, but I don’t want it to become an obsession. And, honestly, food can quite easily become an obsession, because in my thoughts, it already is.

I think I need to allow others some control over my food intake. It may be best if I take full responsibility, but given how badly my overeating can get, I don’t believe that’s realistic right now.

I hope that, once I move into supported housing, I will have a more structured day where it comes to my meals and snacks. I really hope I’ll subsequently be able to eat less. After all, whichever diet you follow, that’s the real deal.

My husband and I were talking about a care facility that wants me, and he asked whether they have side-by-side bikes. I think they do. They certainly do have a stationary bike. We were discussing getting rid of my elliptical, because there’s not enough room in our new house to put it if I only use it on week-ends. I was thinking of taking it to the care facility. Maybe they can use it at the day center that’s near the living facility. That way, I’ll still be able to go on the elliptical.

I, after all, didn’t say I would never lose weight again. I do want to, but now is not the right time. Then when is, you ask? Well, like I said, I’m genuinely hoping that, once I go to the care facility, I will be able to stick to a diet and exercise plan with the help of my staff.

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?