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.

My Relationship With the Night

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.

Unsettling Dream

Last Monday, I had an appointment with my nurse practitioner. First, I said that I was doing pretty well. This is a big step for me, as I’m not normally accustomed to saying I’m well. He started talking about decreasing the frequency of our appointments and possibly even working towards ending my treatment. While I was able to say that this is far too early for me, at least talking about termination, it all still unsettled me.

I mean, I’ve had my latest med tweak only two weeks ago. Two weeks prior to that, I was in a major crisis.

Honestly, looking at it this way, it seems nuts that he even mentioned terminating. This honestly confirms my fear that if I’m doing well, it automatically means I’ll lose my help. Thankfully, I was able to keep myself from panicking and calmly told him that I’m not ready to stop my treatment now or in the foreseeable future. After all, I still want to lower my Abilify dose and that’d take a psychiatric provider to supervise too.

We eventually agreed on a re-evaluation in December or January and to keep the frequency of my appointments as it is now until then at least. My nurse practitioner already seemed to make it pretty clear he really wants to decrease our appointments by then, but oh well.

The following night, I had my first trauma-related nightmare since going on the topiramate. It wasn’t a direct reliving of a traumatic event, thank goodness. However, my dreams rarely are.

In my dream, I was standing on top of the Erasmus building of Radboud University in Nijmegen, a 20-storey building. Someone I didn’t recognize but who sounded strangely soothing was holding me in a comforting embrace. Then, she said: “Sit down please. I can’t hold you any longer.” Just as I was going to sit down, my right leg slipped and I was standing there with my right foot hanging in mid air. Then I awoke. I immediately realized the symbolism in this dream.

I had the sensibility to press the call button and the night shift came by. Thankfully, she didn’t just soothe me, but encouraged me to actually tell her my dream, which I did. She then confirmed that I’m not in Nijmegen now, but in Raalte.

Needless to say, I’m going to make sure at my next appt, my nurse practitioner understands that just because I’m doing well for a few weeks, doesn’t mean I’m ready to quit my treatment.

When I Can’t Sleep

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.

An Unbelievably Good Psychiatrist’s Appt Yesterday

Yesterday, I didn’t blog, because I was overwhelmed and frustrated all evening. The frustration is a topic for another time. My overwhelm was mostly positive in a way, in that I’d had a psychiatrist’s appointment in the morning and was overcome with disbelief at how understanding she was. That in turn triggered feelings of disbelief at my current life situation in general, which triggered memories of trauma.

I’d seen this psychiatrist once before, last December. Then, she had switched my PRN medication from lorazepam to quetiapine. Now was the time to discuss whether this was the right medication for me. I wasn’t sure to begin with. I explained truthfully that, while the medication helps somewhat with my oversensitivity to stimuli like noise, it doesn’t help with the anxiety and PTSD symptoms. I didn’t mention PTSD as such, but I did mention that my basic level of arousal is already pretty high. She asked me to describe how I moved from my baseline, which I explained was already a five on a 1-10 scale, to a level ten. I explained that I move very quickly and, once I’m at a ten, I’m too overwhelmed and unable to process stuff to take a quetiapine. Then, when I recover slightly to, say, a level eight, I can take the medication and it helps me get back to my baseline level of five.

I can’t remember how we got talking about it, but I assume my nurse practitioner already told her some things about my anxiety. I mean, we got talking about my fear of going to sleep, which I up to that point had hardly realized was maybe an actual fear of going to sleep because of nightmares. Until this point, I’d always assumed it was some form of fear of abandonment, as the night staff isn’t in my home all the time.

The psychiatrist pretty quickly got to her suggestion, which is adding a low dose of topiramate (Topamax) to my daily medications. I had heard of this medication before and a person I know online, had gotten it at his own request to help with PTSD-related nightmares. This person got it only for a few nights when he had to endure a triggering situation though. Besides, I don’t have nightmares every night. So before I agreed to it, I asked the psychiatrist to explain what it would do. She said it’s normally prescribed for epilepsy or migraine, but low doses are also found to be effective for trauma-related symptoms. She explained that some people love this medication and some hate it due to its side effects. At first, I’ll get one 25mg tablet to be taken at night. I’ll notice any side effects I’m going to get within the first several days and can then stop right away if they’re too unpleasant. If I tolerate this medication, the dose can be upped, in which case I’ll need to take the medication twice daily. The highest dose she usually goes to for PTSD is 150mg a day. She said that it should help with nightmares, but also could be helpful in preventing me getting triggered and having flashbacks often during the day.

I loved how understanding she was of my symptoms. I can’t even remember having said that I experience flashbacks, but I quite often do indeed. She said that, though I can continue to take my PRN quetiapine, that one dulls me a bit, while the topiramate should actually make me less susceptible to flashbacks. It reminds me of an explanation of the different effects of antipsychotics vs. anticonvulsants in helping with sensory overreactivity that I once read. It said something like, imagine overload is hearing a hated radio channel at top volume in your head. Both antipsychotics and anticonvulsants change the channel, but while antipsychotics give you headphones, anticonvulsants actually lower the volume of the radio. Of course, I will continue to take my daily antipsychotic (aripiprazole) and antidepressant (citalopram).

A possibly not-so-undesirable side effect of topiramate is decreased appetite. Other than that, side effects include drowsiness, sleepiness, double vision and tingling in the hands or feet. That last one, particularly if it’s going to effect my fingers, sounds annoying, but I’ll get to experience that if it happens.

Since my nurse practitioner will have to talk to my care facility’s physician before the medication can actually be started, I don’t expect this to happen till sometime next week. It’s also been decided I will start this when a trusted staff is on shift.

Now this did get me into an excited yet overloaded state yesterday evening. I mean, seriously, how can it be that someone truly understands? It baffles me but I’m so relieved.

A Very Intense Tuesday

Wowah, it’s been quite the day! I awoke at 8AM from a nightmare. Thankfully it wasn’t about my current care facility. I got weighed in. Thankfully, despite all the treats the staff who left us left behind, I’d only gained 200 grams.

I then got dressed, got breakfast and then read some. When my day activities staff came, she said the hairdresser was here. Like I said last week, hair salons are allowed to open again, though I overheard a staff say this isn’t until tomorrow. Oh well. I don’t go to the hairdresser each time she visits the care facility, so wasn’t sure I’d go this time, especially at such short notice. I eventually decided to go anyway and she cut about 5cm off my hair.

Then I went for a walk. Once back home, I had to eat, because I’d have to leave for the dentist at noon. I wouldn’t have my appt till 1PM, but it’s about a 45-minute drive to the care agency’s main institution, where the dentist is.

The staff had only told me of my dentist’s appt yesterday, presumably so I wouldn’t worry. I didn’t really, but my anxiety went through the roof once the dentist was doing his job, despite my having taken a PRN Seroquel to calm my nerves. It wasn’t noticeable to the staff, as I practically froze.

I had to have two cavities filled. Both were underneath an existing filling. Despite the topical anesthetic, it did hurt a little. To be honest, one of the teeth still hurts. I also got some protecctive layer over one of my other teeth, which had receding gums and for this reason the root had become exposed. That thankfully didn’t hurt.

Once I was back at the care facility, I tried to rest, but couldn’t. The anesthetic was wearing off and it hurt pretty bad. I decided to do some reading. Then the orthopedic shoemaker visited. He had tried to widen my shoes, so that my AFO (ankle foot orthosis) and arch support both fit into it and I would still be able to get my foot into the shoe. It worked, so now I can start practising walking with my AFO in. In fact, I’m pretty sure I won’t have to practise, as the discomfort is already manageable.

Once the shoemaker was gone, it was time to have dinner. I then had a bit of a meltdown over dessert, or maybe because of the reason it was just a spoiled tantrum. I eventually calmed down though and was able to enjoy the rest of the evening.

I finally gave in and got myself a membership to the International Association for Journal Writing (IAJW). I was a member some years ago, but at the time rarely used the member benefits. Part of the reason is that I didn’t know how to work Zoom and the get-togethers are on there. I still don’t know how to use it, but I think I’ll learn quickly enough.

Now it’s past 8:30PM. I’m not tired yet, but maybe I should have an early night anyway. Tomorrow, my community psychiatric nurse will be here at 11AM. That should go okay. Overall, I’m doing pretty well.

Appointment With My CPN

Yesterday, we had an appt with our community psychiatric nurse (CPN). I can’t remember all that we discussed. I went into some detail about our sadness and overwhelm over the last few weeks and explained that we had signed a letter to the manager requesting more help.

I tried to ask my CPN to get me an appt with the psychiatrist to discuss my meds, as my overload and irritability are increasing. While I was trying to get this out, I constantly heard someone in my mind say I shouldn’t be asking this as it’s attention seeking or drug seeking or whatever. I don’t even want a med increase per se. In fact, I’m at the maximum dose for both my antipsychotic and antidepressant already. I might want something to help with sleep and especially the restless dreams/nightmares. I feel intense shame about discussing that though, as my nightmares aren’t your standard PTSD nightmares. In fact, my trauma isn’t your standard PTSD trauma.

That is another issue I’m facing. Yesterday, I read an elementary school friend’s story of child abuse. It triggered me to an extent, because I can relate. Still, my trauma wasn’t that bad. She is a child sexual abuse survivor. I am not. Though I endured some physical abuse, it wasn’t that which caused my complex PTSD and dissociative symptoms. The most significant trauma in my life was the emotional abuse and neglect.

Of course, I just told another survivor that childhood emotional neglect and emotional abuse can cause C-PTSD and dissociative disorders too. In fact, dissociative disorders are largely attachment-based, so anything that disrupts normal attachment, can cause it. Still, to apply that knowledge to myself, is quite a bit harder.

I eventually did ask my CPN to refer me to the psychiatrist. My nurse practitioner would normally prescribe my medication, but he does consult with the psychiatrist also. Besides, I’ve never even seen the psychiatrist. So my CPN was more than happy to get me an appt.

Early November 2020 Health and Wellness Update

Like I said a couple of weeks ago, I had a physical health check-up at the mental health agency. That wasn’t good. That is, my blood pressure was high and so was my weight. Even though the nurse said I might not have gained any weight compared to the last time I stepped onto the scales, as each scale is different, I was pretty alarmed. So was my husband. He asked whether I could be put on a diet. Well, no-one can force me, but I did agree on a food plan with the staff.

Now we’re a little over two weeks on. I didn’t get my blood pressure taken today, as my GP recommended we wait three months and then check it everyday for a week. I did get weighed in though. And guess what? I lost 1kg compared to the last time I stepped onto this scale in early September and 3kg compared to the health check. Only two more kilograms to go and I’m no longer obese.

Overall, I’m doing okay sticking to the food plan. I eat bread rather than crunchy muesli for breakfast, make sure I eat enough veggies and fruit and drink at least 1.5 liters of water a day. That plus coffee, which contrary to common belief does hydrate the body to an extent, and occasionally green tea. I do usually eat a cookie with each coffee break, while my food plan says I can only have a cookie with my evening coffee. However, each day that I skip a cookie, I’m proud of myself for making a healthy food choice. Same each morning with breakfast, which is a real struggle, as I’m not a bread person.

I also make sure I get in enough physical activity. Last week, I felt really lazy, but, according to my Fitbit, still got more than the recommended 150 weekly minutes in active heartrate zones. This week, so far, I got 341. I broke my personal step count record yesterday by getting in over 16K steps. I don’t go on the elliptical as often as I’d like, but that’s because after walking two to three times a day, my legs are often tired.

In other health-related news, I talked to my CPN from mental health about sleep on Tuesday. I usually get enough sleep, but I have very vivid nightmares most nights. They aren’t your standard monster-chasing-me nightmares. In fact, most revolve around my sense of safety here at the care facility. My CPN may talk to my nurse practitioner about it. She said I might benefit from medication to help with this. Thankfully though, having discussed the issue has already calmed things down a bit.

Worrying: Will I Be Kicked Out of the Care Facility?

I have had a lot of dreams in which I was kicked out of the care facility lately. They’re no fun. I don’t know why I have these dreams. I mean, yes, a new client may come to my home, but I didn’t find out about that until today. Besides, my staff say it doesn’t mean I’ll have to leave. After all, there’s still an available room in my home.

Still, it scares me. I worry that, if this other client needs a lot of support, I will not get my needs met. I mean, not because of this other client, but because staff will be busier. Oh my, this sounds incredibly attention-seeking. I don’t want to need more support than I can get.

And what if this other client is very noisy? He’ll most likely be assigned to the other communal room than the one I’m assigned to. However, I think he’ll attend my group at day activities, which is already very crowded and noisy as it is. I was told they had many more clients before I came, but well, then this place wouldn’t have been suitable to me.

I talked about my worries to my former support coordinator on the phone. She told me these are just my thoughts and there’s no reason I’ll have to leave because of this other client. Then again, I didn’t get to elaborate on my worries.

I don’t want to be seen as needing too much. I was often seen as needing too much. Either needing too much or claiming to need more than I got. The two are different. The people at the first day activities I attended with this agency, truly thought I needed one-on-one support most of the time, which isn’t even what I was asking for. The staff on my last psychiatric unit thought I needed little care but was just demanding a lot out of some feeling of inadequacy that was apparently unfounded. Either way, I was asked to leave the place. With the psych ward, things were a little nastier than with the day center, but the result was the same.

I saw the behavior specialist who worked for that first day center today. That fueled my worries even more. I mean, she was extremely supportive, but didn’t really know how to handle my issues either. Then again, she never got to talk to me beyond the one time when she made sure I got transferred from the industrial activities group to the sensory group. That was a good move, but when it didn’t fully work out, I guess the manager stepped in and said he’d been accommodating enough and I would have to leave. That’s what I think will happen here too. I mean, my staff are very accommodating, but what if it isn’t enough? Will we find other solutions? Will I get even more accommodations? Or will I at some point just be kicked out? I’m very unsure and that worries me.

#WeekendCoffeeShare (January 19, 2020)

Hi and welcome to another installment of #WeekendCoffeeShare. I can have coffee again, as my flu is gone. It was gone already at the end of last week, but for some time, I still didn’t really enjoy coffee.

I also tried Optimel, which is a type of no-fat yoghurt drink, today. I initially thought it was based off buttermilk, the idea of which has me so disgusted that I don’t even want to try it. It is based off no-fat yoghurt though and it was good. If you want to try it too, I think we have some in the fridge.

If we were having coffee, Optimel or another drink, I’d share that this week has been eventful. I already wrote about it a lot during the week, as I seem to have gotten quite a bit of writing mojo back. That’s good! I also enjoy the comments on my blog and am trying to engage with you lovely readers more. I also love reading and commenting on other blogs and seeing people respond to my comments.

If we were having coffee, I’d share that the week-end was good overall. I had some nightmares again, but was able to keep them from interfering with my day for the most part. Still, I’m considering raising the issue of my vivid, bad dreams with my mental health treatment team.

If we were having coffee, I’d share that my husband didn’t have time to collect all my soaping supplies yet, but we’re probably going to sort through them another time together. I think I may order some supplies online this coming week, but am not sure. My husband and I agreed on throwing out all the ingredients, as they’ve probably gone past their expiration date and aren’t too expensive. At least not if I only buy what I need and don’t end up ordering random stuff in large quantities.

If we were having coffee, I’d share that we succeeded at getting my photo taken at the photographer’s yesterday. This is for my public transportation pass. There are really strict rules on photos for IDs and passports, but mine isn’t due for renewal for another five years. I want the transportation pass so that I can travel to my husband by train. You can get an anonymous one too, but then you can’t load discount subscriptions or the like onto it. Now I will still need to digitally apply for the pass.

If we were having coffee, I would share that my husband and I ate out at La Place, a restaurant chain we often have lunch at, yesterday evening. It was okay, but rather expensive for the quantity and quality of the food. Lunch usually is much better.

If we were having coffee, I’d be sharing that I was an overachiever according to my Fitbit yesterday. It probably says so if I get over 12,500 steps a day. I got 12,700. Today I made up for it, as I sat on my ass almost all day.