Dentist’s Appointment

Posted on by Astrid

I shared last week that I was going to have a dentist’s appointment soon and was really nervous. I reluctantly agreed with the care facility physician that 1mg lorazepam the night before and 1mg about an hour before my 8:30AM appt should help me enough. It for sure must’ve helped some, but I was a little disappointed in how much of the edge it took off.

I had my appointment today. Went to bed at 8:30PM yesterday evening to hopefully get a good night’s sleep. I didn’t. I half-awoke at least eight times before finally waking up at 4:15AM and not getting back to sleep.

Still, I was calm’ish on the way to the dentist’s office. My dentist’s practice is at the main institution for my care agency in Wilp, which is a 45-minute drive from Raalte. I had fully expected to fall asleep in the car, but I didn’t.

I still didn’t really know what to expect, even though I’ve had a lot of cavities filled before. This was an old filling that needed replacing, so that should be easier. It wasn’t. I did get a topical anesthetic. That reminded me of why I hadn’t had it when I had seven cavities filled at age eighteen. The anesthetic is really, well, weird. I really expected the injection to hurt, but it didn’t. Instead, the feel of numbness and thickness was more annoying.

I was really anxious all throughout the procedure, but had no idea how to make it clear. I mean, my day activities staff was with me and she held my hand, but she apparently didn’t feel me pinching it. Then again, what could we have done anyway?

I had one filling replaced and a new cavity filled. It also turned out I have a pretty bad mouth ulcer near the tooth that needed the filling replaced. That will need to go away on its own. I will need to return in April to get some fillings on the other side replaced.

Now we’re twelve hours on and I do have some slight pain still, but it’s manageable.

I’m just trying to relax this evening. Had a pretty good day overall today. Having lunch with the anesthetic still wearing off, was kind of hard, so we chose to move the Tuesday morning cooking activity at day activities to the afternoon. The tortilla wraps were delicious!

#WeekendCoffeeShare (February 23, 2020)

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I’m late to join in with #WeekendCoffeeShare, but better late than never. I just had coffee. Didn’t track my fluid intake today, as I was a bit lax with it, but I also had water, yoghurt drinnks and green tea.

If we were having coffee, I’d ask you how your week has been? Hopefully the weather has been treating you well. Here in the Netherlands, the week started off pretty well, but over the week-end, we’ve had a storm once again and lots of rain too.

If we were having coffee, I’d share that I did some soap making again early in the week. I made a yellow, banana-scented soap that actually turned out quite well on Monday. I haven’t tried my hand at bath bomb making again this week, but I did try out a bath bomb I’d made last week in the bath last Friday.

If we were having coffee, I would also tell you that this week has been pretty good in the physical activity department. I got over 200 active minutes, 150 being recommended. I wasn’t very active every day, but on the days that I was, I went above my daily goal. In fact, I probably was more active than my Fitbit activity tracker claims I was, as it doesn’t seem to count side-by-side bike rides, as I’m not steering then. I discovered that I really like one of the two side-by-side bikes we have at the day center. With the other, I cannot reach the pedals and I don’t like it if I can’t pedal along.

If we were having coffee, lastly I’d share that over the week-end, I’ve mostly been relaxing. My husband would have come over to take me to a nearby city called Hengelo. I was planning on buying wireless headphones with noise canceling functionality there and then we’d eat out. Unfortunately, my husband was sick, so he didn’t come over.

I bought the headphones I wanted online. Then after I’d ordered them, I discovered that the mobile app they work with, which I’d considered an advantage, had really poor ratings on the app store. Thankfully, the headphones work without the app too and actually the app works fine for me. I’m not sure I’ll keep the app though, as I don’t really need it. The headphones, like I said, have noise canceling. I was a little disappointed in how it worked the first time, but then again I wasn’t sure what to expect. I’ve never had noise canceling headphones before, after all and my room was relatively quiet when I tried it. I will try it out at day activities tomorrow, as that’s what I intended the headphones for. The headphones also have Bluetooth connectivity, which I’d never tried before either. I love that, as I’m now able to walk around the room while having my headphones on. I may try to go onto the elliptical while using them tomorrow.

What have you been up to lately?

Whale Sounds #SoCS

Posted on by Astrid

When I started day activities at the first center I went to when being kicked out of the mental hospital in 2017, I experienced snoezelen® for the first time. Snoezelen® is a type of sensory experience at day activities for people with intellectual disability. The idea is that the entire sensory environment can be tailored to suit the client’s needs. In that room, there was a waterbed. I lay on it listening to a CD called something like Whales of the Pacific. The waterbed had speakers inside of it too, so that it vibrated along with the music.

I grew to love love love that CD. When I left for another day center, I tried to get ahold of this CD but found out it was no longer available in stores. My staff at the old center tried to copy it for me, but that didn’t work. At the next center, they didn’t really have relaxing music I liked, so I usually just lay on the waterbed without listening to music. Their waterbed didn’t have speakers in it either anyway.

Now at my current day center, I have come to enjoy relaxing music again. I particularly like a CD called Songbird Symphony. It has music and bird sounds on it. I was able to find the album on Spotify too, so that I can listen to it while lying in my own bed or while relaxing in my recliner too.

As for whale sounds, I discovered an album on Spotify of whale sounds with music by a group called Robbins Island Music Group. They also release other types of relaxing and focus-oriented music, but I like the whale sounds the best.

Interestingly, I still really don’t like whale sounds without music. I love whale sounds, birdsong and the like, but there has to be a musical component to it too.

Looking back, I remember asking my psychologist at the mental hospital whether snoezelen® would be a suitable activity for me. She didn’t think it would be, as she claimed this is only suited to people with intellectual disability. Well, I love lying on the waterbed, Songbird Symphony surrounding me. I don’t care that I’m apparently too intelligent for it.

I’m joining in with #SoCS, for which the prompt today is “animal sounds”.

Feelings After Watching a Documentary on the Blindness Rehabilitation Center

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Today, I got a subscription to see past episodes of Dutch television programs mostly so that I could see a documentary series called Five Days Inside. It’s where three presenters rotate to visit mostly health care settings or other institutions that are not commonly shown to the general public. The episode of four weeks ago was about the blindness rehabilitation center I attended in 2005. I actually still recognized some of the staff talking to the presenter from when I went there.

Watching it had me very emotional. I don’t know why. I guess because most of the clients who were featured, some roughly my age when I attended the program, are so optimistic about their future despite sometimes having recently lost their vision. When I attended the program, I often felt way ahead of these people and way behind of them at the same time. After all, I had pretty good Braille reading skills. My reading speed at the start was more than twice that which is the ultimate goal of the rehabilitation program for adults. As I learned today while watching the episode, some people don’t even have the tactile ability to ever learn Braille. Most will only be able to use Braille for simple labeling, not for reading books, like I do.

On the other hand, I never learnd to cook. Not in those four months in the center or the eighteen months in an independence training home that followed. It wasn’t for lack of teaching, but I couldn’t manage these tasks. Or even simpler tasks such as putting peanut butter on bread.

Today, I talked to my CPN from the mental health agency. We were talking about my skills or lack thereof. She seems to blame my parents for not having taught me properly. I understand. Then again, with my having had a meltdown each time my parents tried to make me learn new practical skills, it’s only understandable that they gave up. My CPN acknowledged this is a common autistic trait. My parents would say I’m not autistic, just stubborn. Apparently I decided from as early as age seven on that I would never learn practical skills because I couldn’t do them visually. Or maybe because I thought I was too smart for them. I don’t know what my father’s theory boiled down to exactly.

And now I see these blind or partially sighted people who are planning on working or going to college. I don’t know how I feel towards them. On the one hand, I feel envy. I wish I could cook tuna macaroni or zucchini soup. I wish I could ride the bus on my own, then go into town to buy raisin rolls. I wish six months of training could teach me the skills to live independently and go to college or work.

Then on the other hand, I feel an enormous sense of relief. I feel relieved that somehow my support coordinator was able to convince a long-term care funding lawyer that it’s at least partly due to blindness that I can’t.

PoCoLo

Taking a Risk

Posted on by Astrid

Today I’m joining in with Five Minute Friday (FMF). The prompt this week is “Risk”.

Last month, like I shared in passing on this blog, I finally opened up to a behavior specialist at my care facility about my struggles. I was really putting myself out there. In my mind, I took a huge risk, because I felt that if I was open about what I really needed, I’d be kicked out of the care facility. I wasn’t.

Then two weeks ago, as I discussed my issues with my community psychiatric nurse (CPN), she started to suggest I live in an apartment building for autistic people. That didn’t sit well with me. I mean, I don’t care who my fellow clients are as long as I get the support I need and I won’t get that in an apartment building. I mean, of course I do somewhat care about my fellow clients, but not in the sense that I need to be able to get along well with them. They aren’t my friends, after all.

I still feel I’m taking an immense risk by opening up about my feelings. I did so again last week, when I asked the staff at my facility to ask the physician for a script for some tranquilizer. The reason is that I’m due to have an old filling repaired at the dentist’s next week. The area surrounding the tooth is already inflamed and I experience considerable pain from it, so I know it’s going to be hard going in and having it fixed, despite the option of getting a topical anesthetic.

So I put myself out there again and asked for something to calm my nerves. Initially, the doctor told me to take 0.5mg lorazepam. Well, that’s not going to work. So I felt off again, like I was being a drug seeker and a burden. I’m used to being seen as a burden, after all.

Being genuinely open about my feelings, my needs and even my wishes is a huge accomplishment for me. I’m totally used to being judged. After all, if people really see me, aren’t they going to discover how wicked I really am? Apparently not.

Quote of the Day (February 19, 2020): Everyone Sees What You Appear to Be

Posted on by Astrid

“Everyone sees what you appear to be, few experience what you really are.” – Niccolò Machiavelli, The Prince

When first starting this blog, I intended to do a daily quote of the day post. I never did. In fact, my “Quotes” category has only four posts. I do like quotes though, so when I figured I had nothing else to share, I decided to do a quote post again.

Today I checked out a sort of guided self-discovery journal called Happy to Meet Me. This quote was printed above the first prompt. The prompt was about common misconceptions about you. It asks you what you wish people would automatically see about you.

This is harder than I thought. After all, the prompt isn’t what you wish people didn’t immediately know about you. I mean, that would be easy. I wish people would see beyond my blindness. But then what would they see?

I think most people would see me as still somehow disabled if they didn’t see I’m blind. Like my sister said when I was a teen, I don’t appear like someone my age judging from even my way of walking. Of course, I have mild cerebral palsy, but the average Joe won’t have a clue. They’ll most likely think I’m intellectually disabled. Until I start to talk. Then most people will be baffled and start to assume my every way of being different is due to blindness again. After all, most people here are still pretty clueless about autism.

I don’t really know what I wish people would automatically know about me. I mean, back when I was still more serious about blogging, I knew that people had their blog name printed on T-shirts and I even for a fleeting moment considered getting one myself. I’m glad I never did, as honestly in the age of smartphones I don’t think I’d want people in the streets to be able to Google me without ever having met me. I mean, my blog is way too personal for that.

I can think of things I wish professionals would automatically know about me. I wish they understood the disconnect between my intellectual and emotional functioning. I can also think of things I wish friends would automatically know. I wish they’d know about my interests. But what would I want other people in general to know? I guess I’d start with the very basic: I am a human being just like you.

What do you wish people would automatically see about you?

Five of My Bookish Habits

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I’m once again joining in with Top 5 Tuesday. This week, the topic is bookish habits. Some of these are probably rather common, but some might not be.

1. I tend to read multiple books at a time. It’s rare that I finish a book before another one captures my interest, so I usually have at least three books I’m in the process of reading at the same time.

2. I almost exclusively read eBooks. Okay, so to those who know me, this may be obvious. I am blind and Braille books are extremely clunky. Then again, I hardly ever listen to audiobooks either. The reason is my poor English listening skills. Oh yeah, I hardly ever read books in any language other than English. This may seem obvious to those who don’t know me, since then you might not know that Dutch is my native language. I don’t seem to like Dutch books though.

3. I can’t do anything else while reading. Can’t listen to music or have the TV on or the like. I’m trying to train myself to listen to whale sounds or other white noise while reading. Otherwise I’m unable to read at day activities and I’d love to be able to do that.

4. I’m a true book collector. Especially now that I am a Bookshare (U.S.-based accessible book service) member, I download a lot more books than I actually read. I mean, when I was younger, my parents or later I myself would have to manualy scan print books for me, so I had an incentive to read all books on my shelf. Now I have a ton of textbooks and self-help books I only ever page through. My fiction bookshelf also has a lot on it I haven’t read. Conversely though, my Goodreads TBR list is rather short. The reason is I hardly use Goodreads.

5. I’m obsessed with checking book length and my progress percentage once I decide to read a book. I’m a slow reader, so I often want to know if I’m progressing nicely.

What are some of your bookish habits?

Guilt Won’t Help Suicidal People

Posted on by Astrid

Yesterday Ashley shared a piece about a blogger friend of hers who had died by suicide and the guilt trips she received on Twitter. The person had scheduled her post for after the fact, so she most likely didn’t see the guilt-tripping. However, this got both Ashley and me thinking about guilt tripping not being a suicide prvention strategy.

This person had written that her intent was to be hit by a train. This led people to blame her for traumatizing the train driver. While it is true that train drivers are often traumatized by people running in front of their trains, it is equally true that guilt won’t help suicidal people.

I was in a suicidal crisis in 2007. I also intended to be hit by a train. I disclosed this to my support worker in a voicemail message, which people overheard, as I was on a bus. They called the police, who called someone called a community physician. This doctor was supposed to liaise with the mental health crisis service. For some stupid reason, the police in that city can’t directly call the crisis service. Anyway, this doctor told me I was making people feel responsible for me.

Well, let me tell you, in a depressive state or any state that can lead to suicidality – mine was diagnosed as adjustment disorder -, this won’t help. This will, if anything, just tell the sufferer that their suffering isn’t as important as someone else’s suffering. It will also most likely reinforce the prevalent idea among depressed people that they aren’t worth much, which may further reinforce their suicidal ideation.

I also want to say there is no way of dying by suicide that won’t affect others. Then again, there is no way of dying that won’t affect those lefte behind.

Some people think that running in front of a train is extra selfish. Well, once I was in the hospital, I spoke to my mother. She told me that I was selfish, because if I died by suicide, my parents would have to pay for my funeral. Let me tell you, this only made my depressive mood worse.

Sometimes, it can help suicidal people if you gently ask who they will leave behind, so that they might realize they still have loved ones. It didn’t help me. I didn’t have friends at the time and my family were, like I said, very unsupportive. In any case, don’t appeal to someone’s sense of responsibility or selflessness. That’s only going to make them feel worse and it won’t actually help those who would be affected by someone’s suicide. People who are suicidal benefit from support, not judgment or guilt tripping.

#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.

Top Five Books That Exceeded My Expectations

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I am once again in the mood for books and book blogging. Today I discovered a new to me bookish meme called Top 5 Tuesday. Today’s topic is about the books that exceeded your expectations. Now I must say that I don’t usually read books I don’t expect to really like. For this reason, last week’s topic of books that weren’t what I expected, is a lot easier for me. Still, particularly in the last few years, I’ve come to read a few books that are outside of my admittedly rather narrow comfort zone and that I did end up loving. Here they are.

1. Brave New World by Aldous Huxley. Well, let’s start with a book I read many years ago. I read this in high school for no other reason than it being in the public domain so easily accessible to me as a blind girl from a non-English-speaking country. I ended up really liking it, unlike the other books I read for English literature.

2. Don’t Wake Up by Liz Lawler. This was really outside of my comfort zone. I usually read YA and had never read a thriller before. The blurb spoke to me though. I ended up finishing this book in a few days, which is extremely rare for me.

3. Attachments by Rainbow Rowell. Though Fangirl has been on my TBR forever, I decided to read Attachments first. It is outside of my comfort zone too, as I rarely read romances or adult fiction in general. I really liked this one though.

4. Cruel to Be Kind by Cathy Glass. Of course, I need to include a memoir in this list, as that’s my favorite genre. I was told about Cathy Glass’ books many times by my trauma survivor friends in the UK and Ireland, but never got to read her books until I picked up this one in 2017. It isn’t the best book of hers I’ve read since, but it was the book that got me into Cathy Glass.

5. Unspeakable by Abbie Rushton. Will I ever have a top five list without this one on it? ☺️ This was a book I really expected to like, but it turned out even better. I loved the plot. It’s a shame I still haven’t read Consumed yet.