“One Chance!” Still Haunts Me…

Posted on by Astrid

Today, I’m feeling like writing but am uninspired, so I’ve been checking out a ton of writing prompts and the like. I’ve been fiddling with various notetaking apps too so that I can finally write snippets without them needing to be finished right away. I know I could do WordPress drafts, but I for whatever reason don’t like that. I’m now trying out Google Keep.

One of the writing prompt series was Halloween-themed and the question was about my most recent nightmare. I can’t remember and, thankfully, I rarely get vivid nightmares anymore. I do get snippets of conversations that replay in my dreams. “One chance!” yells the staff trying to force me to accept her new colleague. Those two words haunt me. I have had this experience before.

I recently learned that PTSD nightmares do not necessarily involve the details of your trauma. I don’t know whether the Redditor who said this, based this idea on the DSM, as I’m fairly certain that in the criteria for PTSD, nightmares do need to be trauma-specific except in young children. However, even just reading that someone else experienced vivid dreams that aren’t necessarily connected directly to their trauma, feels validating.

When I was living on my own, I experienced extremely vivid dreams almost nightly and, even when those dreams weren’t directly connected to my trauma, they were disturbing nonetheless.

In a somewhat similar fashion, the staff’s comment haunting me, in itself, might sound rather innoceous. I mean, I know that it doesn’t necessarily take physical or sexual abuse for someone to be traumatized (again, contrary to what the DSM says), but if this comment were a one-off experience rather than a symptom of the rather traumatizing power dynamics involved in institutional care settings, it wouldn’t have stuck with me. Or it might have, but it wouldn’t have had the negative connotation it has now.

There’s a reason secondary triggers are a thing. I often feel shame about the numbers of triggers I have. Usually though, when the context isn’t in itself distressing, I’m able to point out that something is a trigger for me and move on.

Not with this one, but then again it was actually a boundary that was crossed. If this had happened with three people who aren’t professionally related, it’d have been considered a form of harassment. I still struggle with this concept: that what is considered “normal” in a care setting, would be considered a violation anywhere else.

September Dreams and Memories

Posted on by Astrid

Last night I dreamt of being admitted to the psych hospital. It’s no wonder, since the anniversary of my actual admission isn’t very far away, on November 3. September 23 is my anniversary of going into long-term care and last Wednesday, I celebrated one year in my current care home.

I was reminded yesterday that September is a bittersweet month. That is, I was reminded of the sweet aspect, ie. it being me and my spouse’s wedding aniversary yesterday. The bitter aspect has overshadowed my days with flashbacks and my nights with dreams more than I’d like. I am, thankfully, still coping.

I am hoping that, as I acquire more pleasant memories here at this home, the flashbacks and nightmares will lessen. I know I was saying something similar when reclaiming November in 2021. I hope this time around I will choose following my dreams and aspirations over re-enacting the past.

Sharing this post with Friday Writings #145, for which the optional theme is dreams and memories. This was more of a freewrite than anything else, but oh well.

My Medication Musings: Topamax

Posted on by Astrid

Hi everyone. I had a med review today, which prompted me to write a post in my series discussing the various medications I’ve been prescribed. Today’s med review mostly concerned topiramate (Topamax), so I’ll write about that.

Topamax is an anticonvulsant usually prescribed for epilepsy. It has also shown effectiveness in treating migraines. How exactly it works is not known, but it does in these cases, although it’s not the first choice of treatment for either epilepsy or migraines.

I have neither epilepsy nor migraines. Besides, the highest dose of Topamax I ever took, 75mg/day, is far lower than the effective dose for these conditions. The reason I took Topamax is because it is also believed to help with PTSD-related nightmares and flashbacks. The way my psychiatrist explained it to me back in 2021, it might even lower my general distress level slightly. Well, it didn’t.

Topiramate can have significant side effects, including cognitive impairment, tingling in the hands and feet, and others. On 75mg, I experienced slight tingling, but I honestly don’t know whether I ever had any other side effects. I do have quite horrible tremors in my hands and legs, but these could be from any of my medications or from something unrelated altogether, although my doctor didn’t say what.

I, after some tweaking, eventually settled on a dose of 25mg twice daily. I never really questioned its effectiveness until I was wanting to taper another medication, Abilify, about two months ago and my prescribing physician and I reviewed all of my current psych meds. I said that none of my meds except for my antidepressant, Celexa, seemed particularly effective. The doctor then decided I could discontinue my morning dose of Topamax.

Today, I had a review. Though I have been a bit more distressed lately than usual, this could have many causes, including fellow clients being in distress more than usual too. Furthermore, I don’t experience an increase in nightmares or flashbacks. I admitted that most of my flashbacks are emotional, in the sense that I get dysregulated when triggered rather than having a visual reliving. I’m not sure whether these have increased.

When the doctor asked me what I wanted, I was clear: to discontinue my other 25mg of Topamax as soon as possible. This will happen in mid-August.

I am, honestly speaking, also guided by general principles in addition to personal experience: I learned about a year ago that a then recent systematic review had disproven the effectiveness of topiramate for PTSD-related symptoms.

Hello Monday (October 30, 2023)

Posted on by Astrid

Hi everyone. Oh my, I’ve once again been neglecting my blog. I honestly wouldn’t know why, since over the past few days I’ve felt pretty good. I guess I’ll blame the time of year or something. Anyway, today I’m sharing an update with you all for Hello Monday.

Saturday was a very busy day. It was mostly in a good way, but it still left me feeling overwhelmed. A staff made pancakes for lunch, which were absolutely delish. In the afternoon, I sat down with one of my staff to discuss some of the important life events I want all of my staff to know about. This was intense, as you can imagine.

In the evening, I helped another staff cook macaroni for all of the residents and staff. We started out by cooking the mince, then adding onions, garlic and peppers. We thankfully didn’t have to chop the other vegetables. I turned out to be right about the amount of macaroni we needed. Thankfully, the staff’s estimate had been higher, so we had leftovers rather than not having enough. Unfortunately, neither I nor the staff thought of freezing the leftovers, so I’m afraid they’ve gone to waste.

I had a difficult night with nightmares and interrupted sleep, but it wasn’t as bad as it could’ve been several years ago.

On Sunday, my spouse visited me. We went to Starbucks a second time and, after another caramel frappuccino and a donut for me because the pumpkin spice lattes were sold out, I had to agree that my spouse had been right all along that Starbucks is a waste of our money. I mean, the donut was worse than supermarket ones and truthfully my iced coffee was worse than the one I’d had at McDonald’s several months ago, which had initially made me decide I don’t like iced coffees. However, the problem with that one wasn’t the iced coffee itself but the paper straw. This was an issue now too, of course, but the frappuccino definitely was quite bad.

We also went to Aldi to shop for groceries. I only bought crunchy muesli, since the other things I wanted I’d asked my staff to order from the delivery service.

Sunday evening, of course, it got dark at around 5:30PM already because of the end of daylight saving time. I stayed indoors and watched some TV. We’ll have general elections on November 22, so I watched a humorous political quiz-like program in preparation for it.

Last night, I slept better, thankfully. I went on several walks today. On one of them, I decided to take some fall-themed pictures. The one below was taken a short distance from my care home.

We also visited the petting zoo once again and I took a picture of the guinea pigs.

This evening, I spent my allocated activity time claying with my one-on-one staff for the moment. We both created a flower, though hers looks more like a starfish in shape and due to the colors we used, the center is hardly visible. I usually get some help with my crafting, but this time I loved being able to craft the flower pretty much independently while my staff worked on hers.

An Interesting Nightmare

Posted on by Astrid

I had an interesting nightmare last night. It wasn’t even really a nightmare in the traditional sense of the word. I mean, no violence or monsters were involved. Then again, most of my nightmares don’t involve that kind of scenario.

In my dream, the last client to contract COVID in our care home, came into my room and went straight to my bed while I was lying in it. I tried to crawl to one end to keep my distance, because of course getting out of bed would mean getting stuck touching her. I eventually managed to press the call button, but no-one came. Finally, this client left, but I was utterly distressed and tried to press the call button again, but to no avail. I then went out of my room and to the living room, even though I’d decided to stay in my room while more than half of my fellow clients are positive for COVID. Then, one of the care assistants, a woman I’ve only met briefly once or twice, came to my room to have breakfast with me (apparently it was morning), but I asked for the morning staff. The care assistant explained that the staff was busy and she was having breakfast with me instead. Then I woke up.

The nightmarish aspect of the dream was, in part, the fact that a client with COVID came into my room and my bed. This to me signifies how scared I am of contracting the virus, even though I keep saying there’s no surefire way to prevent it anyway and I’m not scared of getting very ill. I am, however, quite honestly, pretty scared of the consequences of room-based self-isolation should I be positive. I mean, I’m now basically in room-based self-isolation too, but my staff don’t have to wear PPE other than surgical masks and they can still be within a five-feet distance. I’m not sure about holding my hand or holding me in an embrace, as I’ve been cautious and haven’t asked, but I know from the times I had to self-isolate with suspected COVID last year and in 2020 that those are big no-nos should I be positive. At least, my staff wouldn’t even get within a five-feet distance even while wearing PPE then.

Another aspect that was nightmarish to me, was the fact that the unfamiliar care assistant ended up helping me rather than my trusted staff. This to me signifies how I’m experiencing attachment to this staff, and she wasn’t even my assigned home support worker or another of my favorite staff. I guess this counts as a win!

Lastly, a nightmare aspect was the fact that the care assistant told me that the staff was busy. I am forever frustrated with staff being overworked and busy and at the same time, I’m trying to accommodate them as much as I can. For example, yesterday the staff (same one who was supposed to come in my dream) forgot to come by my room at 3:15PM when she had finished handover. At 3:45, fifteen minutes before my one-on-one time would start, I’d had enough and pressed the call button. I was really frustrated, thinking that I’d be left to my own resources now that over half of the clients have COVID. That would make sense, rationally speaking, since I’m not sick or whatever. Not that the other clients are very sick, but oh well. As it turned out, the staff had forgotten to show up because she hardly ever works late shifts. This, plus my nightmare, does show how easily I think that I’m being abandoned.

Sharing this post with Scott’s Daily Prompt from last Saturday on the topic of nightmares.

Moaning About My Meds

Posted on by Astrid

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.

#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?

#WeekendCoffeeShare (October 24, 2021)

Posted on by Astrid

Hi everyone. It’s really sunny out this Sunday afternoon! How about you join me for #WeekendCoffeeShare. I had quite a lot of coffee so far today, as I went out to McDonald’s (well, through the drive-through) with my husband for lunch and had coffee there. It was better than the coffee I had at Subway last week. Then when I came back to the care facility, I had a cup of coffee again. If you’d like a cup of it too, I’m pretty sure there’s still some left, as my staff said her colleague had just made a fresh pot. Let’s have a cup of coffee and let’s catch up.

If we were having coffee, I’d almost invite you to the balcony. It’s sunny, after all, but quite cold. Besides, the balcony is covered in fallen leaves. So I guess we’ll sit indoors after all.

If we were having coffee, I’d share that I managed to get in 12.5K steps yesterday. That’s a huge win, as I had thought my physical condition was declining slightly. Apparently not.

I also went on the elliptical for half an hour on Friday and am planning to go onto it for another 30 minutes later this evening.

If we were having coffee, I would tell you that all this is slightly comforting in light of my probable IBS symptoms and the upcoming abdominal X-ray. I mean, if it’s something very serious, I guess I’d have other symptoms, such as unexpected weight loss or declining physical fitness. Please all still pray for me that the X-rays will show something easily treatable.

If we were having coffee, I would share that my husband bought a new car. Well, he’s going to exchange it for our current Volkswagen Golf on Wednesday. It’s a Daihatsu Cuore, a very small car. His VW is still in relatively good shape, but both of us wanted a cheaper car with respect to gas usage, insurance and tax. With the deal he got, my husband says he’ll have saved enough on these to cover the cost of buying the Cuore within the year. I must say I feel a lot better about this car than I felt back when my husband bought the VW.

If we were having coffee, lastly I would share that I woke up after a nightmare early this morning. It wasn’t yet time for my one-on-one to arrive, so the morning staff helped me put on my music pillow and settle back to bed. I thankfully slept well for about an hour and a half after that. I am really hoping this means that the topiramate is working. I mean, my nightmares aren’t your standard scary dreams and as far as I’m aware, topiramate doesn’t suppress REM sleep altogether, but it does seem to make it easier to let go of anxiety-inducing dreams.

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.