Working On Us Prompt: Self-Care and Personal Hygiene

This week’s prompt on Working On Us is about self-care. I initially thought of self-care as those things we do to pamper ourselves, but then when I read the questions, I realized Beckie means basic self-care. You know, personal hygiene, such as showering or brushing your teeth.

I definitely have always had trouble with this. Part of it may be due to my lack of awareness of my appearance, which may be due to both blindness and autism. However, the fact that I don’t always shower or brush my teeth regularly, certainly isn’t.

I have always had trouble with proper personal care. When I was about fourteen, my high school tutor got complaints from my classmates that I smelled a lot of body odor. He told me I really had to develop a personal hygiene routine, but didn’t explain how to go about it. He was my PE teacher and said that he personally showerd twice a day. So I initially thought I had to do that as well, so the next day, I jumped in the bath at 6AM. My parents were not amused. With my parents, I finally agreed on a routine of baths or showers three days a week, on Sunday, Tuesday and Thursday evenings. That way, if I went to school, it’d never be more than 48 hours since I’d had a shower or bath.

My parents still didn’t explain how to wash myself. Honestly, now that I’m 33, I still get told by my husband at times that I don’t do it properly.

The problem of course wasn’t just that my parents didn’t teach me. After all, presumably my sister knows all about hygiene. It was also that I had an aversion against personal hygiene activities. Here is where my mental health is involved. Like, I have executive functioning issues on the best of days, making a “simple” shower very difficult. When I’m depressed, I cannot cope with the stress of having to shower.

My lack of self-care wasn’t even picked on when I was first assessed by a psychiatrist. Maybe he did notice I smelled, or maybe that particular day my body odor wasn’t too bad or I’d had a shower. If he did notice, he didn’t tell me so or write it in the report. Neither did any of the next so many psychiatrists and psychologists I had. I only found out that my psychologist at the resocialization unit in Nijmegen had noticed because it was written in my long-term care application at the time, that I didn’t get to see until we applied again last year.

As for brushing my teeth, I hated toothpaste. I still do, but at age 18, finally forced myself to use it. I never brushed my teeth properly until I got an electric toothbrush for my birthday this year. Now I’m still not sure I do it right, but I at least brush for the required two minutes. Interestingly, the elctric toothbrush is less horrible sensorially than the handheld one.

I find it interesting that, though lack of personal hygiene is part of an assessment of mental functioning, so few mental health practitioners take the time to discuss it with their patients. Like, when I was in the mental hospital, no-one offered to teach me personal hygiene. Not even when the dentist recommended I get help brushing my teeth. They said it was my responsibility. I really hope that, when I’m in a care facility for people with developmental disabilities, that will change.

Working On Us Prompt: Coping With Crisis

Today, I’m once again joining in with Beckie’s Working On Us Prompt. This week, the topic is to write a narrative of what works for you when facing a panic or anxiety attack, manic episode or other crisis. I don’t get panic or anxiety attacks much or mania at all, so I’m going to describe what works for me when I’m in an emotionally dysregulated crisis.

Like I’ve said before, I have BPD (traits). These are also known as emotion regulation issues. I also experience complex PTSD symptoms. Both can cause me to suffer emotional outbursts. In addition, I can get severely overloaded due to my autism. This can cause me meltdowns, which in some ways are similar to BPD outbursts. In fact, I’m not 100% sure my BPD diagnosis is correct given that autistics, particularly women, are often misdiagnosed as BPD.

Anyway, I usually notice an outburst coming on when I experience an increase in sensory reactivity. I also often start to experience a decrease in my language abilities. I start to stutter or can only make humming noises and repeat the same phrases. My staff at day activities say that when in this state, my communication abilities resemble those of a toddler. It is interesting, in that we have only one toddler alter. When I can’t do something to calm down, I may progress to a full-blown state of meltdown, in which I become angry and sometimes aggressive or self-injurious.

What helps me when I’m in such a state, is to physicaly remove myself from the situation. This is hard though, as often it feels as though everything that happens around me is important. Usually, my staff help me by clarifying what’s important and what is not.

Of course, now that I still live independently, I don’t always have a staff member available to help me sort through a crisis or make suggestions on how I can cope. I, however, have a phone number of a psych hospital I can call in a state when I’m close to a crisis. They can’t do much but listen to me and try to offer advice, but it’s definitely been helpful in some situations. The mental health team that treats me also has a staff available on the phone for crisis intervention during office hours.

Sometimes, when I’m in a really bad crisis, I take my PRN lorazepam. However, I have some experience with it being overused on me in the psych hospital. Like, whenever I’d react to a sound in an irritated tone of voice, staff would tell me to take a lorazepam rather than helping me to figure out what was causing me overload. This has really gotten me weary of PRN medication.

Autistic Pride Day 2019: Reasons I’m Proud of Myself

It’s June 18, which means it’s Autistic Pride Day. I have known this for years, but didn’t realize it today until I saw another blogger share about it just about an hour ago. I don’t really know what to write about for today. I could list positive traits of autism, but others have probably already shared those. Besides, I don’t pride myself on my autism, despite not seeing it as a negative thing. I am proud of myself just for who I am. For this reason, I am going to list some reasons I’m proud of myself. Autism, after all, is part of who I am.

1. I am self-aware. I had a meeting today with a care consultant for a possible living facility for me. I was quite able to articulate my needs and strengths. I am increasingly aware of those.

2. I am resilient. Some people don’t think so, as I’ve had multiple mental health crises. However, I always veer back up.

3. I am determined. I don’t let others tell me what’s best for me. Again, this isn’t always seen as a positive characteristic, but so what? I think these people are just trying to get me to be submissive to their ideas of what I should be.

4. I am honest. I can be blunt, but I always speak my mind.

5. I am open to new experiences. This may contradict some common autism stereotypes. In fact, when I first heard of autism, it was explained to me as “being afraid of new things”. I am not.

6. I am affectionate. I do display affection in my own, autistic way, but I can definitely show love and affection for my husband and others I care about.

7. I am creative. Not in the sense that I can tell imaginative stories – my fiction has a horrible lack of imaginativeness to it -, but I think outside of the box.

8. I can be focused. That is, if something grabs my attention, I can completely hyperfocus on it. This can be a negative characteristic, but it definitely helped me during my school years and helps me focus on what I like now.

What are some reasons you are proud of yourself?

Confessions of a New Mummy

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.

I Got Approved for Long-Term Care!

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

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.

A Timeline of My Mental Health

And yet again, I did not write for almost an entire week. My cold is gone, but now I’m fighting the strong pull of depression. I’m having really dark images in my mind, particularly at night. During the day, I can manage, but often feel too unmotivated and/or uninspired to write.

For this reason, I dug up one of my many collections of journaling prompts. A prompt that spoke to me is to draw a timeline of my life. I’m pretty sure I did this already, but can’t remember whether it was here or on one of my old blogs. I searched this blog for “timeline” and nothing came up, so if this is a duplicate post, I’m sorry. I think I wrote a timeline of my mental health on my previous blog in 2015 or 2016, but I’m just going to write one again.

2006: This was when I entered mental health services for the first time. I had my first appointment with a psychiatry resident on December 12. I was very nervous and could hardly speak a word.

2007: The most eventful year. First, in March, I got diagnosed with autism. I started treatment with a community psychiatric nurse. In July, I started my first psychiatric medication (other than sleeping pills for a while in 2006), an antipsychotic called Risperdal. This was a week before I moved out of independence training to go live on my own. In October, I stopped my antipsychotic again. In November, I landed in a suicidal crisis and was hospitalized.

2008: I remained on the locked acute unit for this entire year. Various follow-up placements were discussed, but none wanted me.

2009: I moved to the resocialization unit.

2010: I got diagnosed with dissociative identity disorder and PTSD in addition to my autism. I started medication again. First, just Abilify (an antipsychotic), but then, Celexa (an antidepressant) was added. I also was put on the waiting list for a workhome for autistic people.

2011: The workhome didn’t work out (no pun intended). Other options were unsuitable for various reasons.

2012: I started to think that maybe I could live with my husband. This wasn’t because I really wanted it (or thought I could do it), but because every other option seemed to have been exhausted and at least my husband wasn’t going to refuse to be with me for needing too much care.

2013: I moved to the hospital closest to where my husband and I had rented an apartment. This was one of the biggest mistakes I’ve made in life. First, my diagnosis of DID and PTSD got changed to borderline personality disorder. This should’ve been a warning sign.

2014: I had to change psychologists. My new one said at our first appt that she didn’t believe I’m autistic.

2015: My husband moved to our cuurrent house. I tried to arrange to be transferred again, but this was refused by my social worker and psychologist. I tried to make arrangements to be placed in supported housing in my new area, but got told that the train has to move on and I had to live with my husband.

2016: My autism diagnosis got removed and replaced by dependent personality disorder, BPD traits and depression not otherwise specified. The process by which this diagnosis came to be, was the weirdest I’ve ever seen.

2017: I got kicked out of the hospital with almost no after care. In my final week, I got some day activities arranged, but that was it. Thankfully, I did get my autism diagnosis back after seeking a second opinion. My current treatment team agree with this diagnosis.

2018: I had a mental crisis at day activities and was told I had to leave that place. Thankfully, I found another place. I started dialectical behavior therapy and movement therapy, but quit again too because I couldn’t really apply what I’d learned. I finally got put on an effective dose of my antidepressant.

2019: I currently get only suppportive counseling with my nurse practitioner. I still take the high dose of both Abilify and Celexa. Would someday like to lower my Abilify dose, but that’s something for the future.

Mental Health Ramble

The month of May is mental health awareness month. I’m not sure how much I can contribute to it. In fact, I only found out about it today. Since I have a cold right now, I really don’t feel like writing. Or really, I do, but my brain is too foggy I can’t come up with a coherent topic to write on. So I’m just going to ramble.

Since it’s mental health awareness month, I could share my story of how I found out I’m mentally ill. Then again, I honestly don’t know. Autism, which was my first diagnosis, isn’t a mental illness. Adjustment disorder, which I got diagnosed with upon my breakdown in 2007, isn’t really either. Thank goodness, it still qualified me for care back then. Since insurance coverage of care is diagnosis-based in the Netherlands, and adjusmtnet disorder is no longer covered, I wouldn’t have been able to get care with just that diagnosis later on. In this sense, it’s good that I was diagnosed with dissociative identity disorder and PTSD in 2010, then borderline personality disorder in 2013.

I am not even 100% sure I identify with mental illness myself. It’s really weird. If I were mentally ill, wouldn’t I need therapy? I don’t get any unless you count the meetings with my nurse practitioner every few weeks.

I don’t feel able to ask for more help on my own accord, even though I’m pretty sure I need it. I have been having a ton of weird symptoms lately and, though I’m getting by, is this really all there is to it?

I had a physical check-up at the mental health agency last February. I have a ton of issues that could be related to my mental health and/or the medication I take for it. Yes, despite the fact that I don’t even know whether I am currently diagnosed with anything other than autism, I take high doses of an antipsychotic and antidepressant. I don’t mind, but I do feel they need regular monitoring.

My psychiatrist would’ve seen me in March, at least that’s what she intended on in December. I still haven’t seen her. I do need to schedule an appt, but I’ve been taught through my years in the mental hospital that, unless you are a pain in the neck of others, there’s no need for you to see your treatment provider. I challenged this belief last year by scheduling an appot for my depression, but I”m not sure I can do it again.

Unusual Interests: Calendar Calculation and More #AtoZChallenge

Welcome to day 21 in the #AtoZChallenge. Today, I will be writing about my unusual interests. You see, like many autistic people, I tend to have interests that are intense and unusual in focus.

As a child, I was advanced for my age in math. When I was around six, my father taught me to do square and squareroot calculations. He used a set of squares (which were really computer chips) to teach me, laying three in one row and then squaring it to nine. I loved this.

When I was eight and the kids in my class were doing multiplication tables, this would be boring to me, as I had all tables from one to twelve memorized already. To make the activity useful for me anyway, I chose to start with the table of nineteen. Don’t ask me why I skipped thirteen to eighteen, but I did.

When I was a bit older still, I taught myself to do calendar calculation. Most people not familiar with autism I encounter have never even heard of that skill, which is a common savant skill in autistics. It involves calculating on what day a certain date falls. Usually, this skill is presumed to be memory-based, but I actually knew the rules for doing it. I also learned about the change from Julian to Gregorian calendar in 1582 and took those ten days that were skipped into account when working with dates before then. I have a newspaper article from late 1999, which I still treasure, titled something like “the fight about time” in Dutch. It explained why the year 4000, unlike other centennial years divisible by 400, shouldn’t be a leap year. How fascinating!

Later, I developed other “unusual” special interests. For example, I used to draw maps when I was around ten or eleven. I always drew Italy, though I knew a lot about topography in general.

When I was in the psychiatric hospital and touring potential supported housing places, I had no idea about their location, except which trains and buses to use to get there. I wasn’t as good with topography anymore. I at one point had most bus routes in my province memorized from Wikipedia.