Living With Sleep Disturbances

On Monday, I wrote about my relationship with the night. Today, I saw that the topic for Tale Weaver this week is sleep. I thought I’d use this opportunity to expand on Monday’s post a little and write about my various sleep issues. After all, being a night owl is one thing. Experiencing significant sleep disturbances is quite another.

First, there is of course plain old insomnia. I talked about this on Monday mostly. For as long as I can remember, I’ve had a lot of trouble falling asleep. Once I was asleep, staying asleep usually wasn’t that hard, except during times of significantly elevated stress.

Then there was the opposite. I honestly don’t think I ever truly suffered with hypersomnia, but there were definitely times I slept far more than I should have. These were often times of low stimulation. IN other words, I was bored to the point of sleeping.

Then there are these sleep disturbances that I cannot really classify and, since I haven’t been to a doctor with them at this point, neither can anyone else. I get really weird half-awakening states where it feels as if I’m doing something for which I should clearly be awake, only to realize later on that I wasn’t doing anything at all and was just half-awake thinking of doing something. With this come weird sensations, almost like hallucinations, too. These half-awakenings currently are very scary. I’ve heard they might be a sign of sleep paralysis, but I don’t think I experience the actual inability to move upon waking up that comes with it.

Then there are nightmares. I don’t get your standard child’s monster-under-your-bed nightmares. Neither do I get violent nightmares usually. In this sense, my nightmares don’t fit the criterion for PTSD. Then again, probably neither does most of my trauma, as most of it was mental and emotional abuse. Rather, I get nightmares that relate to my anxieties, such as of being kicked out of the care facility.

With these half-awakenings and my nightmares, it’s no wonder that sleep often invades my day-time life and vice versa. I find that nightmares often seem to go after me during the day and half-awakenings scare me too. This in turn contributes to a fear of going to sleep, which contributes to insomnia.

One sleep disorder I need to mention here, which I thankfully don’t have, is non-24-hour circadian rhythm disorder. This is common in totally blind individuals and occurs because our natural biological clocks seem not to co-occur with exactly the 24-hour clock of a day. This is corrected in people with some vision by the perception of light and dark, which regulates melatonin production. I have hardly any light perception left, but thankfully my sleep-wake cycle does not seem to be affected as of yet.

Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

Total Blindness

A few weeks ago, the topic of MindloveMisery’s Menagerie’s Tale Weaver was the loss of the sense of hearing. I was secretly hoping for a tale weaver on its visual counterpart to come up and my wish was granted today: today we’re asked to weave a tale about a character who’s blind. It doesn’t necessarily have to be fiction or so I believe.

As most of my readers know, I have always been legally blind. I at best had around 20/800 visual acuity in both eyes, although I claimed to have 20/400 for a long while. By the time I was eight or nine and was pretty much given up on vision-wise by my doctors and parents, I had roughly 20/1000 vision in my left eye at best and my right eye was even worse. For those who have no clue what visual acuity means in daily life, I was able to see someone raise their hand at one meter’s distance but not count their fingers.

Even so, I didn’t consider myself functionally blind until I was thirteen and transferred from special education to a mainstream setting where I was the only person with a visual impairment. There, there was no point in accentuating my tiny bit of vision, since compared to my peers, I was as blind as a bat.

To this day though, I find it hard to accept the fact that, in essence, I’m now totally blind. I only started considering this possibility after my most recent visual screening at the blindness agency, which revealed that I only have a small window of light perception left in the central part of my left eye’s visual field. For those unaware, light perception is the ability to detect the presence of the eye doctor’s flashlight, but notably not the ability to detect what direction it is coming from (that would be light projection). In other words, I am no longer able to tell where a window or other light source is located within my visual field or even whether there is a light source present if I’m not directly looking at it.

Since I always had some residual vision, no matter how little, I have always wondered what total blindness would look like. One day in fifth grade, one of my support staff told us about having been blind for two weeks due to some disease and it not looking like darkness at all. Other blind people have asked rhetorically: “Does your forehead see darkness?” No, of course it doesn’t.

Like I said, I was given up on by the eye doctors when I was eight or nine. For this reason, I didn’t have regular visual check-ups. I had one in 2005 at the blindness rehabilitation center and then again in 2013 in preparation for cataract surgery. In 2005, I had light perception and some level of environmental light awareness in both eyes. By 2013, I had gone completely, totally blind in my right eye. However, I was unaware of this until the optometrist tested my light perception in both eyes.

Since being made aware that I’m totally blind in one eye, I’ve tried to cover my left eye to see what total blindness looks like. I seriously don’t get a clue. In fact, the closest I come is that blindness, indeed, is the absence of any sight at all, including the sight of darkness.

This does make me think that, when (I’m pretty sure it’s “when”, not “if”) I’ll have lost that last tiny bit of light perception in my left eye, I won’t be aware of it at all for a while. It terrifies me.

An Eventful Wednesday

Hi everyone on this Wednesday evening. The weather was beautiful today. It was cold in the morning, but sunny and about 21°C in the afternoon.

This morning, I had an appointment with my community psychiatric nurse. I hadn’t seen her in four weeks, as two weeks ago she had had to cancel due to a crisis situation. This time, I was able to talk through some of my struggles. I vented some of my grief with respect to my blindness. I ended on a positive note though, sharing the wonders of VoiceOver Recognition.

At 1PM, I had a quick dental check-up. The dentist comes to our day center four times a year for these, so I didn’t have to travel. Thankfully, all was well and I was literally gone within minutes.

Then I had a talk with my support coordinator about my upcoming care plan review. We had to discuss my risk inventory. This is a long list of possible risks someone can experience, such as of choking, falling, epileptic seizures, aggression, etc. With each box, the staff have to tick of “Yes” or “No” and if yes, elaborate on the risk. I disagreed with several “No” answers, but then my support coordinator explained that this is within the current care situation. For example, there is no risk to my personal hygiene because my staff are there to help me with this.

I did get my coordinator to add a “Yes” to risks re social media use because my Internet use can often trigger me and lead to meltdowns. I did ascertain that these risk assessments are not necessarily associated with restrictive measures. In other words, just because there’s a risk associated with my Internet use, doesn’t mean they need to restrict my online activity.

Later, I realized there really needs to be a “Yes” in the box on risks associated with overweight too. I had said this at the meeting but my coordinator had said that since I don’t suffer with sores due to fat or the like, there’s no risk. I do feel there is, given that my BMI is above 30 and I need support in maintaining a healthy’ish diet.

I went on three walks this afternoon and evening. On my way back from one of them, my one-on-one asked me whether I wanted to photograph the chickens near the day center. A client at another care home here has always wanted to have chickens and he finally got his wish granted a few weeks ago.

Unfortunately, only one of them lays eggs so far. The guy whose chickens these are says the other one’s crest needs to get redder before she will lay eggs. My husband said it might actually be a rooster though. I hope not.

How Far I’ve Come #SoCS

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday is “Where”. Linda, the host, is probably referring to the 9/11 terrorist attacks and where we all were at the time when she says that she has a feeling the subject of many posts will be the same. I, though, think I already shared where I was during the 9/11 attacks. I was in my room, writing in my diary about being used for a reality TV show. I mean, in the taxi home from school, I was secretly filmed while talking to the taxi driver and then was asked to consent later to it being shown on TV. I obviously refused. I was only fifteen. My mother said they should’ve picked someone at least five years older than me.

I don’t want to revisit that day though. Instead, I want to reflect on where I came from and how far I’ve come in those twenty years since the attacks.

On 9/11, I was in the ninth grade at grammar school or a classics-oriented high level high school in my city. I was being mainstreamed despite being multiply-disabled, because my parents believed I was just blind and oh so intelligent (which they considered a disability too in some ways, but it really isn’t).

Two months after the attacks, on November 2, 2001, I experienced a major mental crisis, which was of course brushed off by my parents. Six years later exactly, I did land in the hospital when experiencing another crisis.

I spent 9 1/2 years in the psychiatric system, 2 1/2 years living with my husband because the psychologist at my last psych unit felt I was misusing care and should be living independently. Then I went into long-term care. It’ll have been two years on the 23rd.

In a sense, I’ve only deteriorated in those twenty years. On 9/11, I proudly told that taxi driver how I was doing being mainstreamed as a blind person in a high level high school. Twenty years on, I live in a facility with people with severe to profound intellectual disabilities. Even then, I’m the one who needs the most care, getting one-on-one most of the time.

In another sense though, I’ve come a long way. I’ve definitely become more like me, the real me, who doesn’t care what her parents or teachers or support staff for that matter think she’s supposed to be like.

#WeekendCoffeeShare (September 4, 2021)

Oh my, it’s September already! I at first was going to type “July” in this post’s title, then thought that it was August, only to realize that month too has passed. The weather is still pretty nice for late summer/early fall: sunny and about 20°C.

Today, I’m joining #WeekendCoffeeShare. I already had all my coffee for the day, so a soft drink or water will have to do. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been a true rollercoaster emotionally. It started with my vision screening by the blindness agency. I really want to share more about my feelings of grief and denial about having lost all my vision. In fact, I still always want to put in a caveat about that tiny bit of light perception I still have left whenever I’m saying I’m now totally blind. But I guess that’s what I am: totally blind.

Then again, I don’t want to wallow in my sadness and would quickly move on to demonstrate VoiceOver Recognition and celebrate the powers of technology.

If we were having coffee, I’d also share that the day center is reopening on Monday after eighteen months of being more or less closed due to COVID. My day activities will largely remain in the home with my own one-on-one staff though.

That being said, I did hyperfocus a lot on the details of my activity program and the times staff aren’t directly available for me. This caused some major distress, but I eventually managed to put things into perspective.

If we were having coffee, I would tell you that I finally surpassed my Mom with respect to step count in the Fitbit app. For a while, I myself had been last among my Fitbit friends. I however did get in over 10K steps two days this past week. That’s a big win, considering I struggled to even get to 5K most days last week.

If we were having coffee, I would vent my frustration about my pasta machine, which I use for polymer clay, not working correctly. The thing I use to attach it to the table, won’t work. Thankfully though, the staff who gave the machine to me has a son who may be able to fix it.

If we were having coffee, lastly I would tell you that I’ve been doing a lot of inner work lately relating to my life as a dissociative (multiple personality) system. After some conversations with my assigned home staff, I finally decided to do a system mapping again. Like I mentioned on Thursday, I used to have a list of all of us here on the blog, but removed that as it was less relevant. My staff though do find it useful.

I also downloaded an app called Simply Plural, in which systems can keep track of who’s “in front” (the alter you see on the outside) and can do system polls on decisions too. I will probably write the developer about some bugs in its usability with VoiceOver and some suggestions, but so far, it seems quite cool.

I also finally decided to download some more books exploring trauma and stuff from Bookshare. I might explore the subject more, be it in my personal journal or here.

How have you been?

Things That Made Me Smile (August 30, 2021) #WeeklySmile

Hi everyone on this beautiful Monday evening. I was feeling a bit down in the dumps earlier today. The reason is the fact that I had a vision screening by the blindness agency this morning. The result was more or less as I expected: I only have a tiny bit of light perception in the central visual field of my left eye. It however was a bit of a bummer too, in that I’d hoped to perform slightly better.

To cheer myself up, I thought I’d join The Weekly Smile and share how amazingly far assistive technology has come. It may not replace actual vision, but, combined with my imagination, it can go a long way.

What I mean by assistive tech specifically is VoiceOver Recognition, the iPhone’s built-in image description functionality that was released first in iOS 14 not even a year ago. Last month, I already mentioned that it can recognize some basic shapes and colors (such as my pink, heart-shaped polymer clay ornament.

on Wednesday though, my father-in-law posted a picture of a statue to the family’s WhatsApp group and asked us to guess who it was. Without VoiceOver Recognition or similar third-party apps, I would have lost out on the fun. VoiceOver Recognition though immediately described the image as a statue of a bear on a water fountain. I replied with this answer in the group and was asked to name the bear. A little Googling revealed that it was “Berend Botje” from the nursery rhyme by that name.

My husband told me that, from the picture, he hadn’t made out that the statue was of a bear. I ran the image through VoiceOver Recognition and Seeing AI, one of the more commonly-used third-party apps for image description, just now and neither recognized it as a bear specifically this time. However, the fact that I “won” my family’s very visual riddle despite being totally blind, definitely makes me smile.

I’m also joining in with #LifeThisWeek and #SeniSal.

Riding the Train

Back when I still lived on my own in 2007, I would frequently ride the train. Or go to the train station planning to go on a train somewhere but melt down once at the platform. Then, people would often call the police.

I shared my experiences of riding the train, or wanting to do so, as an autistic and blind person on a public transportation users forum in 2008. I shared pretty much every little detail up till my crisis on November 2, which happened at a train station too. The person who had asked me to share, then pointed out that it might be a little TMI, but that’s how I am.


This piece was written for the Six Sentence Story blog hop, for which the prompt this week is “Train”.

Lifelong Learning

I discovered 10 on the 10th last month, but didn’t feel like joining in at the time. Yesterday, a new edition went live and the topic is lifelong learning in honor of back-to-school season. I’m joining in today, as I loved the questions. Here goes.

1. How old were you when you started school? Did you attend pre-kinder and/or kinder or go straight into first grade?
I started in preschool at age three and in Kindergarten at age four. Here in the Netherlands, Kindergarten takes two years, although the first year (when children are four) wasn’t mandatory back in my day. It is now.

2. Were you a good student? What was your favorite subject?
In terms of academic performance, I was above-average in most subjects once I was properly educated. I added that last bit because, at my first special education school for the visually impaired, where I attended first till third grade, I was a little behind in reading and writing due to several factors. These included poor teaching and the fact that I didn’t start learning Braille till second grade, so had to pretty much start over learning to read and write then.

In terms of behavior, I did okay. I am autistic (undiagnosed at the time), so I did have my challenges, but I wasn’t the type to stir up trouble in school on purpose.

My favorite subject was math for most of elementary school and my first year in secondary school. Then, once I was mainstreamed at a high level high school and math became one of my hardest subjects, I started to like languages more. At the end of secondary school, my favorite subject was English.

3. As a child, did you take music lessons? Or play a sport? Do you still play an instrument now?
No, not at all! Contrary to the stereotype of blind people, I’m not musically-talented at all. Neither am I good at sports. I did attend a children’s choir for some years though, but mostly just hummed along.

4. Did you attend any kind of training or classes beyond high school? If so, what did you study? Did you wind up working in a profession or job for which those classes or training prepared you?
I went to college for one year to study applied psychology and to university for two months to study linguistics. I did get my foundation (first year certificate) in applied psychology, but didn’t get any credits in the linguistics program. Oh, I did take some classes at Open University (psychology once again) in 2009. I don’t need any education for what I do now (day activities for the disabled).

5. Have you taken any personal growth or adult education classes for fun? During the year that was Covid, did you home school, learn a new app to work from home, teach yourself to do something you might have paid someone else to do for you?
Uhm, not really. I am mostly self-taught where it comes to crafts and stuff. I would really like to take some classes in maybe crafting or writing someday, but not sure.

6. What would you like to learn how to do that you don’t know how to do already?
Right now, obviously I’d like to learn more crafting techniques, particularly polymer clay.

7. Name something that you learned easily. Then name something that was a struggle for you to learn to do.
As a child, reading print came easily to me. I taught myself to read at about age five. Reading Braille, on the other hand, was a struggle, mostly because I didn’t accept the fact that I was going blind.

8. What’s the last thing you remember learning? What kind of learner are you: visual, auditory, hands-on/kinesthetic, verbal, logical/mathematical?
The last thing I learned was moving a polymer clay slab from the work surface without distorting its shape (too much). I am probably a mix of a kinetic/hands-on and a verbal learner. I don’t do well with spoken instructions though. Rather, I need to read them.

9. Hard to teach an old dog new tricks, school of hard knocks, pass with flying colors, learn by heart, burn the midnight oil, pull an all-nighter, play hooky – which of these expression best fits your life lately? Why?
Pull an all-nighter, I guess. I’m often up late hyperfocusing on my latest obsession (currently polymer clay) and learning new things about it.

10. What is something you’ve learned from past mistakes?
To follow my own plan rather than relying on what others want me to do. As regular readers may know, I suffered autistic burnout in 2007 when at university trying to live on my own. This was what my parents wanted me to do. I ended up in the psych hospital only to be kicked out 9 1/2 years later almost with no after care even though I had hardly improved, only because I’d met my husband and my psychologist figured that if I was married I should be able to live with him. I didn’t cope and thankfully successfully fought for long-term care. This has been the best decision of my life.

What have you been learning recently?

I’d Rather Not Ask

This week’s prompt for #LifeThisWeek is “Questions”. Denyse writes in her original post that she tended to be a question-asker until she was faced with a cancer diagnosis, when she felt too overwhelmed to ask questions. And maybe, I’m assuming here, also a little too self-conscious. She was able to ask some of her questions eventually but even still encounters things she didn’t even know she wanted to know.

I am not a huge question-asker. Like, over the past week, I’ve been asking lots of polymer clay-related questions, but I’ve felt self-conscious each time. I’d rather solve my own problems than ask for help.

Unfortunately, with me being multiply-disabled, that’s often hard. Even when my only recognized disability was blindness, I struggled with asking for help for those things that those who are just blind usually get help with. I’d rather figure things out on my own, only to get frustrated and distressed when things didn’t work out. I considered myself fiercely independent, but I really wasn’t.

As my father at one point said: “You have an issue with only saying when you think people should have helped you.” I realize that’s rather disrespectful indeed, because, well, other people are not mind readers and cannot have guessed that I wanted to ask for help. Then again, I didn’t necessarily want to ask for help.

I’m trying to learn to ask for both explanations and assistance when I need it now, but I often still feel very self-conscious. This happens especially online, where people can’t tell right away that I’m disabled. For example, people in the polymer clay Facebook groups often suggest I watch YouTube videos, so then I feel kind of obligated to say that those won’t work for me as I’m blind. I do tend to say that I’ll ask my support staff for help, because of course I can’t expect a random person online to explain everything in plain text. Each time I feel I have to mention my disabilities though, I feel some of my self-esteem go. I’m not sure that’s justified, but it’s the way it is.