#WeekendCoffeeShare (November 28, 2021)

Posted on by Astrid

Hi everyone on this Sunday afternoon. It’s a little less rainy today than it was yesterday, but it’s still cold outside. Today, I’m joining #WeekendCoffeeShare again. As I type this, I am right between my lunch and my afternoon coffee. I can probably offer you a coffee before I finish this post, ha. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was better than the previous one. Like I said yesterday, my appointment with my nurse practitioner went pretty well and we were able to get to some agreements that will hopefully lead to better treatment for me. For example, I’d struggled to convey in an E-mail how I was struggling two weeks prior and he had asked me to wait for our appt to discuss the matter. That hadn’t sat well with me, so now we agreed that next time he’ll try to call me to further assess the situation.

We also agreed that he would try not to stop me or change the subject if I’m struggling or getting emotional while trying to communicate something. I gave as an example one time when I felt unable to speak and he, possibly not wanting to push me, said: “We don’t have to discuss anything if you don’t want to.” Overall, I feel slightly optimistic about my treatment going forward and I consider that a major win given the desperate state I was in last week.

If we were having coffee, I’d also share that I got some insight into the near-hallucinatory, dysregulated states I occasionally go into at night. My nurse practitioner thinks they might be related to the phase between being fully awake and being asleep. Unfortunately, there’s little to nothing to be done about them, but it feels comforting to know I’m not really “losing my mind”. It also seems, from this idea, unlikely that I’m going to experience these states during the day and really “going crazy”.

If we were having coffee, I’d tell you that, unfortunately, I did experience nightmares last night. It’s probably to do with the flashbacks and memories I experienced yesterday. I am so grateful though that the nightmares aren’t affecting me too much now that I’m awake.

If we were having coffee, I’d tell you that, thankfully, I’ve also been a little more active lately than I was before. Like I mentioned yesterday, I made a polymer clay unicorn on Thursday. My husband wants to have it. I’ve also been reading more lately. I won’t at all reach my reading goal for the year or even come close to how many books I read last year, but at least I finished another book.

If we were having coffee, lastly I’d ramble a bit about how scared I am because of the rapid rise in COVID cases here in the Netherlands. Today, we’re entering an evening lockdown. Stay-at-home orders have also been extended to recommending people work from home unless it’s not possible, like during the first lockdown in March of last year. I’m scared this will mean the day center closes again. More so though, I’m scared of contracting the virus or even a cold and needing to quarantine in my room. Let’s hope I won’t.

How have you been?

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.

My Relationship With the Night

Posted on by Astrid

I have a really complicated relationship with the night. On the one end, I’m a true night owl and can enjoy sitting up late reading a book or browsing the Internet. Before the Internet, I used to listen to a talk show on Dutch public radio called “Night shift” on weekend nights between 2AM and 6AM. The show might’ve aired on week nights too, but I wouldn’t allow myself to stay up past 1AM then. (Yes, I wouldn’t allow myself. My parents didn’t set a bedtime for me past age ten or so.) In the show, people called in to ask for advice or opinions on sometimes rather mundane topics, such as the difference between fruit and vegetables.

One time, a woman called in to ask for opinions on her eye condition. She literally had a hole in her eye, she explained, which she could see when there was static on TV. The hole, however, also meant she was unable to see facial expressions, which limited her card-playing ability. She assumed that and wanted opinions on whether she could have gotten the hole because of fifteen years of almost daily crying. I don’t know whether she ever received a satisfactory answer, but I do know that story brought chills to my spine.

As I said, I’m a true night owl. Others might call me an insomniac. In fact, I’m pretty sure my relationship with sleep and the night was rather unhealthy for most of my life. As a young child even, I used to stay up late at night worrying about things I’d seen in the news, things I’d heard or experienced during the day, etc. My parents hardly comforted me. In fact, they pretty much left me to my own resources. That’s one reason they didn’t set a bedtime for me.

When I lived on my own in 2007, I had an even worse relationship with the night. I developed something akin to OCD that mostly showed up at night. I had to check each night whether my alarm was on, door locked, windows open, heating off, electronics unplugged and I’m pretty sure I forgot something. I’d spend hours going through my apartment checking each several dozens of times.

During the last week of my living on my own, I’d often leave my apartment in the dark to go outside and wander the streets. I still get flashbacks of this darkness now.

Once in the psych hospital, the first medication I was put on, was temazepam, a sleeping pill. That worked for all of two weeks. Then I got put on Nozinan, a strong sedative, which however kept me drowsy for most of the day too. Then followed nitrazepam and diazepam until I finally decided I’d rather have insomnia without meds than with meds.

I eventually did have to go on meds after all, but these were daily meds. I currently don’t experience severe insomnia, but I do experience disrupted, restless sleep and nightmares. I did back in 2007 too, but, though I did mention it when admitted to the hospital, it never got paid attention to. Thankfully, my latest addition to my psych med combo, topiramate, does help with this.

This post was written for today’s Tourmaline’s Halloween Challenge prompt: night.

When I Can’t Sleep

Posted on by Astrid

Today, Sadje asks in her Sunday Poser what we do when we can’t go to sleep. Now I must say I only occasionally suffer with insomnia nowadays. As a child, teen and young adult, I’d suffer with it a lot more often. When in the psych hospital, I even tried a handful of different sleep medications until they all stopped working and I just accepted lack of sleep. The one sleep medication I remember that actually worked for a relatively long while if I didn’t use it more than twice a week or so, was zolpidem. I liked that one best, but I actually still have a kind of psychological longing for the floaty feeling it gave me.

Anyway, now that I only occasionally suffer with insomnia, I usually still don’t like to just lie there and do nothing. The nice, floaty feeling on zolpidem would’ve helped with that at least. Rather, I usually get up and do some reading on my phone. Of course, I know that electronics are supposed to keep you awake and this may be the case for me even without the blue light (being that I keep my screen completely black). Indeed, I don’t usually find that reading helps me fall asleep, but at least it helps me pass the time until I’m naturally tired enough to fall asleep. Or until it’s morning.

I wanted to go off on a tangent here and talk about other sleep issues too. The most annoying of these is finding myself in a half-sleeping, dreamlike state where my mind seems to want to do things but my body won’t. This experience, which some people I know have said might be sleep paralysis, is extremely frightening. It usually happens when I take a nap, which is why I avoid taking naps if I’ve had this experience recently.

Which gets me to fear of sleep due to nightmares. I experience nightmares that actually affect my daytime functioning at least a few times a week. I don’t always remember my nightmares exactly and I’m not even sure those I do remember count as nightmares, as sometimes when I’m in them they aren’t fear-inducing. They however do trigger my PTSD flashbacks, if that makes sense. They usually are very vivid. I have had this issue more since starting on my antipsychotic, but now that I think of it, it’s probably more of an anxiety or PTSD symptom. I am really hoping the topiramate, which I’ll hopefully be starting within the next week or two, will help with this.

ZZZ: The Role of Sleep in Self-Care #AtoZChallenge

Posted on by Astrid

Welcome to the last post in the #AtoZChallenge. For my letter Z post, I have, each year that I got to it, used ZZZ at least among other things. And yes, it’s totally fitting with the self-care theme too. Sleep is so important! Today I’m going to explain a bit about how you can take better care of your sleep hygiene and how sleeping issues can signal other problems.

Most people have some sleeping issues at times. I have had quite a few nights in which I fell asleep late recently.

When I was a child or teen, anxiety would often keep me awake. Since I didn’t get any help for my anxiety then, the issue grew until I had to use sleeping pills for a while at age 20. When I moved into independent living, my insomnia grew worse and it was one contributing factor to my suicidal crisis three months in. The first medication I got, was again a sleeping pill.

Now let me be very clear: sleeping pills are not to be used long-term. When I got my first script in 2006, my GP said to take it no more than two to three times a week. I was taking sleeping pills for a few months early in my psychiatric hospital stay, but I eventually decided less sleep without pills was better than less sleep with pills. I did take sleeping pills on an as-needed basis for a while after that. However, except in extreme cases of severe mental illness keeping you awake a lot, you ultimately need to find other solutions. So learn to practise proper sleep hygiene. I honestly don’t do too well on this now that I write about it.

For example, one tip is to use your bed for sleeping only. Though I do that, I tend to nap a lot too. I am learning to get up after at most an hour, so that I won’t disrupt my night-time sleep.

Also, it is recommended to turn off electronics at least an hour before bedtime. I’ve heard this is because the blue light of your smartphone or computer screen can stimulate the brain to stay awake. As I always keep my screen curtain on, this isn’t an issue for me and it may not be with dark mode either. However, I do experience that keeping very busy shortly before bedtime keeps my brain awake.

Some people find that hearing some white noise or soft music can help them sleep. I usually turn on calming music when I’m struggling to fall asleep, but eventually turn it back off as it seems to lead to a more restless sleep.

Having a soft toy in bed does help me too. Occasionally, I diffuse some lavender essential oil. There’s no scientific proof that it works, but it may help.

In addition to insomnia, sleeping too much is also an issue. I find that I sleep way too much when I’m depressed. This, of course, in turn worsens my depression.

Lastly, waking up unrefreshed can happen even when you get the right amount of sleep for you. This can be caused by a number of factors, including medications you may be taking or sleep disorders such as sleep apnea. If this happens a lot, it may be time to see your doctor. Then again, doctors can be incredibly dismissive where it comes to fatigue.

Working On Us Prompt: Sleep Disorders

Posted on by Astrid

The past few days have been pretty busy, so even though I did want to blog, I hardly found the time. Now it’s already latish evening too.

Today I’m once again joining in with Working On Us, for which the prompt this week is sleep, insomnia and other sleep disorders.

As a child and teen, I suffered from insomnia a lot. I would often be awake for the whole night or hardly sleep at all. On week-ends, I sometimes made up for it by sleeping in, but I was definitely chronically sleep deprived. Though my parents sometimes suggested, and I don’t know whether they were joking, that I take valerian or melatonin, I wanted nothing of it. In fact, when I was going in for eye surgery at age seven or eight, I refused the tranquilizer they offered us before the operation. I also constantly fought the anesthesia.

When I was 20, I sought treatment for my insomnia for the first time. My GP prescribed temazepam, the most commonly-used sleep medication here in the Netherlands at least at the time. I was very scared when first using it, being that I’d not taken any medication in years, not even paracetamol.

I think that what lay underneath both my insomnia and my refusal to take medication for it, was an intense fear of losing control. I was, after all, pretty compulsive particularly as an older child and teen.

My sleep issues escalated in 2007, when I lived on my own in Nijmegen. Though I didn’t sleep less than I had as a younger person, I did suffer from the effects of sleep deprivation more. When I was admitted to the psychiatric hospital, the first medication I was prescribed was again temazepam. Then followed another few benzos and even levomepromazine (Nozinan), which is normally only used for palliative sedation.

I had to take “twilight anesthesia”, which means high doses of benzos, several more times prior to procedures and chose them over the pain that would otherwise ensue. However, I still had terrible fear when I “awoke”.

Other than insomnia, I’ve had an assortment of other sleep issues. My husband said at one point that I have hypersomnia, because I slept so much. This was probably down to a combination of medication, vitamin and iron deficiencies and lack of structure.

I am a sleep talker and I snore too. The snoring got slightly better as I lost weight last year. I’m not sure whether it’s worsened again since I’ve gained weight back up again. The sleep talking comes and goes with stress.

Lastly, I suffer from vivid dreams and nightmares. They’ve gotten a little better now that the long-term care situation is more or less settled, but during times of stress, I very often awaken in a state of shock because of vivid dreams. That is, I’m not 100% sure they’re REM sleep dreams or night terrors (which happen during stage 4 sleep). I’ve never had a sleep study done either.