Moaning About My Meds

It’s 8:30PM and I’m probably going to bed before 10PM tonight. Since upping my topiramate (Topamax) a week ago, I’ve been more sleepy earlier at night and consequently going to bed sometimes by as early as 9PM or even earlier. Unfortunately, the quality of my sleep doesn’t seem to be better.

Last night, I had a horrible dream in which my staff were chattering among themselves and all the while I was trying to get their attention because I was anxious, but to no avail. That’s how I’ve been feeling ever since upping my medication: I am still anxious, but too drowsy to react to it. In fact, I’m not even 100% sure my experience last night was completely in my dreams, because, when I awoke, I couldn’t get to the level of alertness necessary to press the call button.

I don’t really mind the drowsiness as much. Or the tingling in my fingers and toes, which I’ve started to experience since increasing my topiramate dosage too. But the medication does have to work for my hypervigilance. And hypervigilance is not just an outer reactivity, or is it?

My assigned home staff did say yesterday that she judges from the staff’s reporting that I’m calmer, because I come calling out for help less at the times I’m not having my one-on-one. That comment triggered me intensely, because it made me think I’m supposed to take my topiramate so that I don’t ask for help outside of my assigned support hours. I’m reminded of my psychiatrist’s comment about meds as a “chemical nurse” again, something I now don’t see as quite as validating a statement.

This evening, I did E-mail my nurse practitioner my concerns. Of course, the topiramate’s positive effects might still need time to kick in, but if they don’t, I’d rather go back to my old dose. Which, of course, means we will need to find me a different PRN medication or something for when I go into crisis. It also means we’ll need to postpone my aripiprazole (Abilify) taper. Honestly though, I don’t really care about those.

Grateful for a Life of Abundance

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” (Philippians 4:6 NIV)

The above Bible verse was the verse of the day for today on YouVersion. It immediately spoke to me. Today also, the prompt word for #JusJoJan is “Abundance”.

a thing I realized when I read up on abundance, was how fortunate I am. I don’t have to worry about not having something to eat tomorrow. I don’t have to worry about not having clothes on my back. I have a roof over my head – two, in fact, in a way, in that I have both my room in the care facility and my and my husband’s house. Though I do worry slightly about my financial security now that it’s time for my new long-term care copay to be determined, I really don’t have to worry. I have enough money to afford my necessities and most non-necessities I want too. Even if (most likely) I do get a higher copay, I still don’t have to worry about going into debt. All this means I am far more well off than the vast majority of people.

I also live a life of abundance because I am in reasonably good health both physically and mentally. Though I endured trauma in both childhood and my adult life, I am currently safe – even though PTSD sometimes tells me otherwise. I know there are a lot of people who feel happier or more stable mentally than me, but I have been in psychiatric hospitals long enough to know there are also many people who are a lot sicker than me.

I know that comparisons don’t always work. Telling yourself others have it worse isn’t a magical cure for misery or depression. However, gratitude definitely helps cultivate happiness.

I have an abundance of reasons to be grateful. Last Saturday, I listed ten gratefuls for the past 24 hours alone. Today, I could list a number of things too. I am grateful for my favorite Christmas cookies, called cinnamon stars. I finished the first packet out of four I got for Christmas. I am grateful for Senseo coffee. I am grateful the web store accepted my returned Fitbit charger (it wasn’t working). I am grateful elementary and secondary schools are reopening next week. Although I don’t have kids, this does feel like a small glimmer of hope for a way out of lockdown.

I trust that I will be able to live a life of abundance in spite of the hardships I may endure. I cannot do it alone, but through the grace of God in Jesus Christ, I will get there. He does not always give me what I want. I mean, I may actually have to pay a much higher long-term care copay than I expect now (I won’t find out until the 12th or so). Then again, He will take care of me as long as I put my trust in Him. Isn’t that awesome?

Linking up with InstaEncouragements.

Gratitude List (November 27, 2021) #TToT

Hi everyone on this rainy Saturday! I hope all my U.S.-based readers had a great Thanksgiving. Here, it isn’t a thing. However, I like to show thankfulness everyday. For this reason, I’m doing a gratitude post. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I reached my goal of 10K steps a day once during the past seven days. Okay, it was on Sunday and I only got (barely) more than 5K steps one other day this past week (Monday). The rest of the week, I’ve been rather sedentary. However, I’m still grateful I can apparently still walk 10K steps in a day.

2. Speaking of which, I am also grateful I managed 15 minutes on the elliptical today. It didn’t earn me much in the way of steps, but at least my muscles haven’t totally atrophied so far.

3. I am grateful I had a good talk with the current behavior specialist for my care home on Tuesday. It was my second time meeting her. She helped me clarify some of the things I wanted to talk about with my nurse practitioner too.

4. I am also grateful my appt with my nurse practitioner went pretty well as a result too. I had originally considered quitting treatment with him, but decided against this after the talk with the behavior specialist. Overall, my appt with my nurse practitioner was relatively constructive. We decided on some things to make our sessions more productive. For instance, next time I E-mail him about not being well, he’ll try to call me back so we can assess the seriousness of the situation and what can/needs to be done rather than him telling me to wait for our next appt.

5. I am grateful I am sleeping slightly better lately than I used to. I am still not usually getting the nine hours of sleep a night I need to function optimally, but I’m getting close.

6. I am grateful I have been able to pick up the polymer clay craft again after a bit of a break when I’d finished the owl. I created a unicorn yesterday and it looks pretty cool.

7. I am grateful for French fries yesterday in celebration of St. Nicholas. The holiday isn’t till December 5th, but we celebrated it early at my care home.

8. I am grateful I got nice presents. Well, my husband will actually get the bill, as like I explained before, the care facility doesn’t pay for St. Nicholas presents. I had E-mailed my staff a wishlist too. As it turned out, I didn’t get the specific things I’d had on my wishlist, but I got similar things. I got a number of cookie cutters to use with my polymer clay and a little box of fruit candies.

9. I am grateful my assigned home staff, who was my one-on-one this evening, helped me through some tough flashbacks. I did ultimately decide to take a PRN quetiapine, but I think I really benefited from my staff’s help too.

10. I am grateful my loved ones so far aren’t directly affected by COVID, in the sense that I don’t have any direct family members or friends who’ve contracted the virus.

What are you grateful for?

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.

#WeekendCoffeeShare (October 9, 2021)

Hi everyone on this sunny Saturday. Well, it’s not sunny anymore, as the sun has just set, but it was sunny all afternoon. Today I’m joining #WeekendCoffeeShare again. I’m in Lobith and I usually have tea in the evenings here, but if you’d like a cup of coffee, I’m sure my husband can make you one too.

If we were having coffee, I’d share that this week was all quite meh. I’ve said this a couple of times already over the past week. It’s all just one endless stream of sadness, triggers and the resulting flashbacks.

I’m pretty sure I’ve decided I’m going to ask my nurse practitioner to up my topiramate on Monday. I hope this means I won’t have to wait for my next weekly med refill on Saturday to get the upped dose. Of course I know meds won’t solve everything, but I can’t think of anything else right now.

If we were having coffee, I would share that I did find some inspiration in the soaping and essential oil departments again. Yesterday, I even managed to make a simple butterfly melt and pour soap.

If we were having coffee, I would tell you that I also managed to get in more steps this week than last week and that’s not counting tomorrow yet. Okay, last week was quite a bad week in the walking department, but oh well, let’s be thankful for the little things.

If we were having coffee, I would tell you that my orthopedic footwear finally returned from whoever (Shoe or AFO Guy) was working on it earlier this week. It finally seems to be okay now. Not great, but okay. I have at least been able to walk some 25 minutes on the footwear without too much pain and am pretty sure it needs getting used to as well.

If we were having coffee, I would repeat how grateful I am for all the lovely comments on my blog. Like I mentioned last week, I’m participating in #Blogtober21, though my only goal right now is to publish a blog post everyday. I’m no longer going with prompts. Today, I almost wouldn’t have written a post, as I’m with my husband in Lobith like I said and this usually means I can’t concentrate. However, I didn’t want to break my streak.

If we were having coffee, lastly I would share my husband cooked me a delicious rice and meatballs meal this eveningn. Neither of us was full after it, so we ended up ordering something else afterwards. However, the meal was very tasty!

How have you been?

Time-Out Rooms, Comfort Rooms, Snoezelen® Rooms: Special Care Rooms in Mental Health and Disability Services #31Days2021 #Blogtober21

Today, I’m not feeling too inspired. The optional word prompt for the 31-day writing challenge is “Comfort”. For some reason, probably the fact that I’ve been experiencing a lot of flashbacks to my time in the mental hospital lately, I was immediately reminded of comfort rooms. Then I thought, maybe I could use this post to raise some awareness of the different kinds of special care rooms used in mental health and disability services.

Back in my early days in the mental hospital in 2007, seclusion or isolation was pretty commonly the only intervention used, maybe in combination with forced medication, on disruptive patients. I was initially admitted to the locked ward only because the open ward had no available beds. During my first night in the hospital, I heard a lot of screaming and was later told that the staff “handled it appropriately”. Another patient told me that the screaming patient pretty much lived in the seclusion room. I was pretty scared out of my mind.

Once moved from my parents’ city hospital to my own city’s locked ward, I again experienced seclusion as a witness repeatedly. The ward I stayed on, was the less restrictive locked ward, so it didn’t have isolation rooms. Rather, ours were called time-out rooms, but that didn’t make them any better to be honest.

I experienced one hour forced time-out once, three months into my mental hospital stay. After that though, it was used as a threat repeatedly. This, for clarity’s sake, is illegal: seclusion can only be used to avert danger, not as punishment.

About three years into my mental hospital stay, some wards, particularly locked wards, started deconstructing their seclusion rooms and repurposing them as “comfort rooms”. A comfort room in theory looked nicer, as it had soft toys in it and maybe some special lighting. However, them being repurposed seclusion rooms did mean they still had the vibe of isolation about them. Indeed, the few times I was sent to the locked ward for a time-out once at the open resocialization ward, I spent my time in the “comfort room”. This did not feel comforting at all.

My last psych ward, which I spent four years on between 2013 and 2017, had both a comfort room and a time-out room. This comfort room was indeed actually comforting. There was an essential oil diffuser, a CD player, comfy couch and a few other things. What made it different though was the fact that you couldn’t be locked up into it. If you were to be locked up, it’d have to be in the time-out room.

At the end of my psych hospital stay, I first learned about snoezelen®. This, like I’ve explained before, is a method of helping people with significant intellectual or developmental disabilities by modulating their entire sensory environment. I wanted to experience what a snoezelen® room would be like. My psych hospital had an intellectual disability unit with a room like this, but my psychologist refused to let me visit it, claiming I’m far too capable for this type of activity. I stood my ground and got a place at my first day center with my current agency, which did have a snoezelen® room.

When I was at my first day center with my current care agency, the snoezelen® room was sometimes used as a time-out room for me, in that I was forced to go in there when I was irritable and not allowed to come out. Though the door couldn’t be locked, it did feel intensely triggering to me. It is one reason I still struggle to be in my current day center’s snoezelen® room if no staff is present.

Of course, I must say here that an old-fashioned time-out room has hardly any furniture: just a bed and a stool, both attached to the floor, as well as a toilet made of metal. The seclusion room the screaming patient from my first night in the hospital was locked into, was likely even worse. Comfort and snoezelen® or other sensory rooms are much better. Still, the idea that someone can be put into solitary confinement against their will, is rather disturbing if you ask me.

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.

#WeekendCoffeeShare (June 4, 2021)

Hi everyone! I didn’t participate in #WeekendCoffeeShare last week, but today, I really want to. Even though it’s nearly 9PM, I honestly still crave coffee. So let’s grab a coffee or other drink and let’s catch up.

If we were having coffee, I would share that the weather has been great here over the past week! I mean, right now I’m almost soaking in my own sweat and wishing it could be a little cooler, but it’s much better than all the rain we had during most of May.

If we were having coffee, I would share that, due to the warm weather, I was able to meet my step goal every day of the week so far. In fact, by yesterday evening, I’d gotten in more steps than during the entire week last week. Woohoo!

If we were having coffee, I would share how much I’ve been enjoying nature lately. On Wednesday, I heard a chorus of frogs when walking beside the local canal. Unfortunately, I didn’t have my phone with me and, when I did later that day and yesterday, they weren’t as loud. I still fully intend on capturing some nature video sometime soon.

If we were having coffee, I would share that today, the water system in my care home had to be cleaned professionally because legionella bacteria had been found. It scared me a little, both the contamination and its associated risks, as well as the method of cleaning, which apparently involved chlor gas. I mean, we weren’t allowed in the building while the cleaning took place, but I somehow got it in my head that I’d be forgotten. I wasn’t, of course.

While we had to be outside of the building for the day, some of my fellow clients went to the day center. The staff proposed I go with some other clients to a monkey zoo called Apenheul, which is in the city of Apeldoorn, about a 45-minute drive from Raalte. I initially didn’t want to go, as I felt I’d just be overloaded. Since I would have one-on-one support for the entire day, my staff said I didn’t have to go if I didn’t want to and could decide this morning to sit in the day center or do other activities. My husband tried to persuade me to go anyway and so I did. I didn’t join my fellow clients and took a shorter route through the zoo. Overall, it was a good experience. My one-on-one took some pictures with my phone. Unfortunately, the monkeys didn’t make many sounds.


If we were having coffee, I’d tell you that I might finally start my topiramate next week. At least, the GP figured out my options for going on a different birth control (because topiramate blocks oral birth control) and okay’d my going on the depo-Provera injectible birth control. She said that she’d get back to my staff next week to make sure I can start it. Thankfully, a nurse at my care facility will be able to administer it. Please everyone pray that this means I can start the topiramate soon. I really could use some relief from my PTSD.

If we were having coffee, lastly I would however share how effective learning to be present has been for me lately. This is an exercise I found in the book Coping with Trauma-Related Dissociation and it’s really quite helpful. I haven’t yet been able to practise it when very distressed, but when I’m at a moderate level of distress, it does help.

How have you been?

Just Rambling

IWSG

I really should be posting my Insecure Writer’s Support group post today, but I’m not fussed. I didn’t write as much over the past month as I’d liked to and the optional question doesn’t appeal to me. For this reason, I’m just going to ramble. I will post the #IWSG link and image on this post, but I won’t really be sharing much writing-related news.

I mean, the optional question is how long you let drafts sit there before redrafting. The short answer is that I don’t really do drafts. I write my pieces in one go usually and publish them onto my blog right away. Of course, I do have freewrites and some works-in-progress that I haven’t published anywhere, but even my one published piece that I wrote back in 2014, I wrote in one sitting.

Okay, now that we have this out of the way, let me ramble about other stuff. Today, like most of the past month, has been mixed. I was okay for most of the morning and afternoon, but in the evening, I’ve really been struggling. My feelings that, if I drop my mask (figuratively speaking), everyone will run from me and no-one will want to care for me anymore, are intense. For those who might be visiting from the IWSG: I live in a care facility due to my multiple disabilities, including challenging behavior. Lately, I’m spiraling more and more out of control and this seems to create a vicious cycle of anger, shame, self-hatred and more anger.

Yesterday, I had an appointment with my psychiatric nurse practitioner. We decided there that I won’t go the diagnosis route for dissociative disorders, but that off the record at least we agree that I have dissociative identity disorder (DID). We won’t do a whole lot of system mapping. Not only have I done this already, but it seems counterproductive to the idea of needing to practice being present.

Speaking of which, I looked up the learning to be present exercise in the first chapter of Coping with Trauma-Related Dissociation and had my staff write it down. The book is in English (at least, my edition is) and my native language is Dutch, so I translated the exercises and where appropriate, adapted them to suit my needs. After all, one of the exercises is naming three things you can see around you. As I am blind, this won’t work. I do find that other exercises do help me. One in particular is the butterfly hug.

Tomorrow, my GP will get back to me about my medication. I would’ve gotten topiramate prescribed to me for my PTSD symptoms, but found out last week that it’d block my birth control pill from working. My nurse practitioner would originally have prescribed the topiramate, but now I need to work something out about getting on a different contraceptive first. This will hopefully be sorted tomorrow or at least then I’ll know when I can come in to see my GP about it. I really hope this medication (the topiramate) will help, since I’m on quite an emotional rollercoaster.