Living With Sleep Disturbances

Posted on by Astrid

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.

Total Blindness

Posted on by Astrid

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.

Flash Fiction: ER

Posted on by Astrid

I look(1) at the patient and notice(1) she’s cyanosing(2). I check her pulse, which is very faint(5). I tell my colleague in a whispering)3) voice: “Please get the doc. I don’t know what happened, but she has to come through.” I lovingly(4) stroke her arm. Despite being a nurse, I can’t act. I can’t imagine my own daughter is in such a feeble(5) condition.

This piece of flash fiction was written for MindloveMisery’s Menagerie’s Saturday Mix for this week, which was Same Same But Different. The challenge is to write about the five words provided, but not use them. The words were: see, blue, soft, kind and weak.

I saw that many participants used synonyms for “blue” such as “sad” and “moody”. For me though, immediately, words that convey the color blue came to mind.

Obviously, this piece is entirely the product of my own imagination. I have absolutely no idea whether there’s any realism about this tale, but I loved trying to come up with it.

Tanka: Identity

Posted on by Astrid

Identity is
Knowing who you are and where
You’re going in life
What direction you’re headed
Without much doubting yourself

This is my first attempt at poetry in a long while. It’s supposed to be a tanka. A tanka is a form of Japanese poetry related to haiku. It consists of five non-rhyming lines of five, seven, five, seven and seven syllables. I am pretty sure there are other rules, but this is the simple definition. I wrote it for Mindlovemisery’s Menagerie’s Saturday Mix. I was inspired to choose the topic by today’s Daily Addictions word prompt, which is “Identity”.

Recovery

Posted on by Astrid

Today’s Sunday writing prompt over at Mindlovemisery’s Menagerie is “recovery”. This is such a commonly used word in mental health. “Recovery” is the ultimate goal for any mental health consumer or so it is assumed.

I attended a recovery course while in the mental institution in 2010-2011. It was very interesting. It was made clear that recovery is not the same as cure. You can be recovered and still live with a mental illness. Rather, recovery refers to getting as positive and fulfilling a life as possible. It is commonly used in conjunction with “rehabilitation”. The difference is though that rehabilitation is a treatment approach and is hence centered on the professional relationship, whereas recovery is completely patient-centered.

The recovery course I took was specifically for those residing on one of the long-term wards in the psychiatric hospital. This at first surprised me, since being hospitalized is clearly not having a fulfilling life. Or is it? I mean, if you can’t live independently, can you still consider yourself recovered.

I was at the time not planning on ever living independently. In fact, though I was engaged to my now husband, I was planning on going into a workhome, a long-term living environments for autistic people.

Here, it is important what I wrote above, that recovery is completely patient-centered. This means that, though it is believed that most people would want to live as independently as possible, if you don’t, that’s okay too. You are encouraged to make your own decisions, no matter how ill you are.

I have always been of the opinion that self-determination and self-reliance are not the same and shouldn’t necessarily be connected. I am pretty determined, but I’m not very self-reliant. I think personally that self-determination should be more important. Clearly, my last psychologist at the institution disagreed. She diagnosed me with dependent personality disorder, which according to the DSM is characterized by passiveness and an inability to stand up for oneself. I didn’t meet those criteria, but she felt I was asking for care she felt I didn’t need. She kicked me out of the institution almost with no after care. I survived, but I don’t feel well. Now it’s time to focus on self-determination. To try to reach the goals I set for myself.

Like I said, recovery is completely patient-centered. This is what I strive for. To me, recovery is feeling as well as possible. This means I can still work on recovery while going into long-term care.