“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.

#WeekendCoffeeShare (September 21, 2024)

Posted on by Astrid

Hi all on this beautiful Saturday in September. I’m joining #WeekendCoffeeShare today. It’s 7:30PM, so I just had my last cup of coffee for the day. I also had a delicious smoothie I made. I must admit, I normally don’t make the best smoothies, or at least I don’t really like them myself. This one though was absolutely great! I used banana, pineapple, coconut water and a bit of cinnamon. The cinnamon was old, so even though I’m pretty sure I put quite a bit into my smoothie, I only got a slight taste of it. I shared what I had left with my fellow residents, but since this is a virtual get-together, you are invited to grab a virtual cup.

If we were having coffee, first I’d share about the weather. It’s been absolutely gorgeous with daytime temperatures of about 23°C most of the week. It’s also been quite sunny. Mornings are chilly, but then again it’s September, so that makes perfect sense. Tomorrow is supposed to be the last warm day and then next week daytime temps are supposed to drop to as low as 13°C.

If we were having coffee, I’d probably be stating the obvious if I said I’ve been walking a lot. I sometimes feel guilty when this is pretty much all I do during my allocated activity time. Then again, I tell myself the weather isn’t going to be as beautiful as it is now forever.

I also have been taking photos on my walks. That is, I usually hand my phone to my staff, who then will be snapping the pictures. I enjoy it nonetheless. Yesterday, we were able to capture a bunny.

I have also been loving using Be My Eyes and other image description apps. Be My Eyes was even able to correct me and my staff on what type of bird was swimming in the institution pond.

If we were having coffee, I’d talk a little about the new iOS and WatchOS versions that came out on Monday. They’re quite stable and there aren’t many bugs affecting VoiceOver or Braille use. That’s a rarity with the first release of a major software update. I didn’t initially think I’d care for iOS 18, but WatchOS 11 does have some nice features and I’d need iOS 18 for that. I am looking forward to seeing my Vitals trend in a few weeks.

If we were having coffee, I’d tell you that I’ve been struggling a little with flashbacks and nightmares. I am, thankfully, for the most part still able to cope.

If we were having coffee, I’d share that on Wednesday, I celebrated one year in my current care home. I treated the entire home to burgers again, like on my birthday, but this time the salad I made as a side dish was the highlight for me.

If we were having coffee, lastly I’d tell you that on Thursday, it was my and my spouse’s thirteenth wedding anniversary. We drove to Nijmegen to have lunch at what I consider to be my favorite restaurant, Dromaai. Not that the food is exceptionally good, but I have fond memories of eating out here with my partner when I still lived in Nijmegen.

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.

Friday Feels (September 13, 2024)

Posted on by Astrid

Hi everyone. Today I’m participating in Friday Feels. The idea is to answer three questions about the past week and share an F word related to it. The questions are:


  1. What made me happy?

  2. What made me sad?

  3. What made a difference?

F word

My F word for this week is “fall”. Last Saturday, it looked like summer wasn’t going to end anytime soon, since the daytime temperature reached 27°C. From this past Monday on though, the weather’s been considerably chillier and rainier. On Wednesday, the temperature didn’t even get above 14°C. Today is slightly less chilly, but the nights are truly getting colder.

What made me happy?

First, Chinese takeout for dinner on Monday to celebrate a fellow client’s birthday.

Second, a treat of one of my favorite biscuits with my afternoon coffee today.

Third, the fact that I was able to get the WiFi on my iPhone to work properly again here. It turned out that turning off a privacy setting on my phone for this particular network, solved the issue.

Last but certainly not least, swimming! On Wednesday, I heard that two of my fellow residents were going swimming at the institution pool that evening. Usually, about seven or eight residents go and it’s too overwhelming for me, but since there was another activity too, just these two guys were going. I took up the courage to ask my staff whether I could go too. It was amazing!

What made me sad?

I experienced a slight increase in bad memories over the past week. Mostly, they were manageable, which is why I’m not using the word “flashback” to describe them.

What made a difference?

There are several things that made a difference this week. First, the fact that one of my trusted staff returned from vacation this week. Most are still on holiday, so the next few weeks will be somewhat difficult still, but I managed this week.

Second, the weather, like I said, is very different and it made a difference, in that I could sleep under my weighted blanket without sweating excessively. This is important, because until now I thought something might be wrong with me. I guess not.

Third, the new agreement that staff will no longer unlock the door for me when I want to elope and will physically restrain me if necessary to keep me from for instance climbing over the fence. I saw the agreement on Tuesday and, though I still have some questions about it, I am for the most part relieved about it.

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.

Opening Up About My Trauma

Posted on by Astrid

Last Monday, I was going for a walk with my one-on-one for the moment when we saw a few clients and staff she knew (she’s a temp worker). She wanted to “say a quick hi”. That turned into a fifteen-minute conversation between her and one of the other staff, which eventually turned to clients with severe challenging behavior being taken on outings off grounds and then, when they act out, staff being filmed by bystanders when restraining the client. This discussion triggered me, because it led to flashbacks of the times I’ve been “guided” (as staff call it) to my room. More like physically moved by several staff at a time, and the fact that I wasn’t officially restrained (because that probably only counts when you’re pinned down to the ground), is solely due to my lack of physical strength.

I asked the staff, admittedly more curtly than I should have, to not have these discussions in my presence in the future, as it was triggering me. She told me I was making it all about me and if I wanted to offer an opinion I should’ve made sure I listened to the whole thing because now I was twisting the truth. I told her about the time I was shoved to my room and staff threatened to lock me up in there. “You probably deserved it,” was her response.

This led to a whole chain reaction of triggers, in which I started to doubt the validity of my trauma-related symptoms. Didn’t I deserve the harsh punishments my parents gave me? I know at least back in my day an “educational spanking” was legal. In some U.S. states, child abuse isn’t even child abuse if it’s used as punishment.

I can’t go into the details of the punishments I endured as a child, and I’m pretty sure they’re not necessarily illegal. Does that mean they can’t have caused me PTSD?

That evening though, I was having intense flashbacks and decided to open up to my staff for that moment. She happened to be one of the staff who’d shoved me to my room on Friday and threatened to lock me in there. I had to admit – even though I don’t believe it – that I deserved to be physically moved to my room. I mean, the reason was my dropping the F-bomb while in the communal room (and then refusing to go to my room on my own when told to), which, well, truthfully staff do all the time.

After I’d given examples of the way my parents treated me, my staff seemed quite shocked. I honestly don’t understand this, as she restrains clients everyday and never even cares about the impact this has on them. I mean, I know, staff restraining clients is legal, but then again does something have to be illegal to be traumatic? And if so, where’s the boundary between an “educational spanking” and child abuse? Or does it have to be unwarranted? In that case, I must say, my parents acted out of a need to show who’s boss because they’d felt powerless over my behavior. I did, indeed, try to excuse my parents’ actions by explaining about my own behavior. The staff didn’t seem impressed.

I know, in my heart, that the truth is that restraints can and do traumatize clients too. I know I experienced trauma while in the psychiatric hospital because of being locked up in seclusion against my will. I know I still experience emotional trauma. And, of course, I’m more sensitive to this due to the trauma I endured as a child. But it isn’t black-or-white. And this is confusing.

Finding My Way #31Days2022

Posted on by Astrid

Hi everyone. The first optional prompt for #31Days2022 is “way”. I thought of several titles for this blog post, but ultimately decided on this one. The rest just randomly flowed out of my fingers.

Only four days before I move to the new care home. I told my mother about it on Tuesday. Somewhat surprisingly, she didn’t react weird to the fact that I’m going to live on institution grounds. Not surprisingly, she did start talking to me about how I might be able to walk around grounds independently then.

I did, indeed, mention to the support coordinator and behavior specialist for the new home, when they came to assess my suitability for the home, that I may want to learn to take a little walk myself on institution grounds someday. Afterwards, my current assigned staff cautioned them against too high expectations. After all, I want to be “normal” pretty badly, but I still remain multiply-disabled in some significant ways.

I know that people who are “just” blind can learn to find their way around institution grounds quite easily. But I’m not “just” blind. For one thing, I am not even sure I could use my white cane in a manner that would allow me to detect obstacles safely, given my mild mobility impairment due to cerebral palsy. For another, due to autism-related executive dysfunction and other factors, my energy level varies greatly from one day to the next. So does my capacity to handle sensory stimuli. Consequently, I may be able to find my way for a short walk around grounds pretty easily one day and get hopelessly lost and frustrated the next.

I remember back when I was in the psych hospital, I voiced a similar wish to learn to take a quick walk around the building. An orientation and mobility instructor from the blindness agency came by, taught me a few times with very limited success. Before she was even finished teaching me, the staff decided it was my responsibility, so no matter my mental state, if I left the ward (even in a meltdown), no staff would come after me. I was then supposed to take my little walk, despite the fact that, in a meltdown, I wouldn’t remember where to go at all.

I know at least here in the Netherlands staff can’t legally restrain you once you’ve left an open ward, but that wasn’t the point, since I didn’t need restraining. Their point was that I was now somehow capable enough to find my way by myself and, if I wasn’t, it wasn’t their problem. This at one point led to my husband needing to drive over from the next town to take me back to the ward.

In a sense, I should know the new care home isn’t like the psych hospital, but I keep getting flashbacks. All I can hope for is that my current staff will do a proper handover.

Heal

Posted on by Astrid

Today’s prompt for Five Minute Friday is “Heal”. I read several of the responses before writing mine. Some left me feeling all sorts of things, which I will try to articulate in the below freewrite.

Is it possible to heal from a hurt you can’t explain in words? Can something that you can’t describe in words, a memory that is just visceral, even be traumatic? I am referring to preverbal trauma, of course and, in theory, I know the answer: yes, it exists and yes, healing is possible.

However, in reality, how can I prevent my cognitive processes from constantly interfering with my experiences? Or should this be prevented at all? I mean, if I can rationalize that I’m now in 2022, living in the care facility and not in whatever danger my body thinks (feels?) it’s in anymore, does it even matter that I endured preverbal trauma?

After all, it’s a fact that I did: I was born prematurely, spent the first three months of my life in hospital and had several complicated surgeries before the age of five. The question is whether said possibly-traumatic events affected me and, if so, how to heal from them.

#WeekendCoffeeShare (April 2, 2022)

Posted on by Astrid

Hi everyone on this cold Saturday evening. I am joining #WeekendCoffeeShare today. I’m afraid I just have water or maybe the staff has put some soft drinks in the fridge by now. My favorite soft drink, Dubbelfrisss, wasn’t cold when I had my evening drink about an hour ago. Anyway, let’s have a chat.

If we were having coffee, I’d tell you that I finally have been crafting again today after a week of just watching crafty videos and doing nothing creative at all. That is, I’ve been blogging, which counts too, of course, but I haven’t touched my polymer clay or jewelry-making supplies or macrame cords or anything.

Today, I finally did a couple of pieces for the mobile for the baby my sister is expecting. I also finished the polymer clay hedgehog I’d started on about a month ago. At first, I was disappointed, because I’d used up all of a particular color for its body and now it was nowhere to be found, so I couldn’t do the ears in the same color. Turns out real hedgehogs also have slightly differently colored ears than their bodies. Besides, I never really meant to be doing a fully realistic sculpture anyway (I can’t).

If we were having coffee, I’d share that the rest of the week was quite meh. I’ve been having tons of plans in my head, but no ability to actually put them into action. Today, I also experienced a ton of flashbacks and internal chaos. Seriously, the discrepancy between my intellectual ability and my emotional immaturity is really getting at me. I find that I can intellectually think of a lot of things that emotionally I cannot handle at all. I’m not sure if this makes sense.

If we were having coffee, I’d tell you that I may want to research an autism support method by Colette de Bruin. My assigned home support staff pointed it out to me and said she’s pretty much using the method on me already, but I may benefit from learning about it myself.

If we were having coffee, I’d share that I am very happy with the latest iOS update. I finally was able to do some reading again on my iPhone yesterday, since the update fixed a bug that caused my Braille display to become pretty unresponsive. I usually read with just my Braille display, as I don’t like VoiceOver’s synthetic speech for that.

If we were having coffee, lastly I’d tell you that I have a quiet weekend, because my husband isn’t coming over and I have no other plans. Next week though is going to be busy, especially the weekend. I am going to the nationwide cerebral palsy day with my mother-in-law. I will be attending a workshop on aging with CP in the morning, which I am really looking forward to. In the afternoon, I’ll be attending a yoga class. I may not be able to write a coffee share post then, especially since I’m also supposed to stay up-to-date with the #AtoZChallenge. I’ll be certain to write about it though.

How have you been?

Gratitude List (March 25, 2022) #TToT

Posted on by Astrid

It’s the last weekend of March. I didn’t realize it until I read it in this week’s Ten Things of Thankful. Yay, I’m joining in again with a gratitude post! Here goes.

1. I am grateful for daylight until nearly 7PM in the evening. Make that 8PM come this Sunday, as we’re entering daylight saving time. Yay!

2. I am grateful for a field of daisies near the day center. I am grateful I was able to take a few photos of them and I didn’t fall over when sitting on my knees to snap the pics.

Daisy

3. I am grateful I didn’t lose interest in polymer clay altogether. I made a unicorn again today and thoroughly enjoyed it. I also worked on another, larger polymer clay project yesterday.

4. I am grateful the weather permitted me to go outside without a jacket on several days this week.

5. I am grateful for a delicious microwave omelette on Wednesday. I didn’t use cooking oil or butter to microwave the egg, so according to the dietitian, it’s as healthy as a boild egg. I also added chopped onion and bell pepper.

Microwave Omelette

6. I am grateful for birdsong. I got awoken by a bird at 6AM several mornings this week. Though I wasn’t particularly thrilled about that, I do appreciate the sound of birds singing in general.

7. I am grateful it was pay day on Wednesday. I had a whole list of things I wanted to buy in my mind that I had told myself to wait for until pay day at least. So far, I’ve only ordered one thing off the list and that’s something I’ll need for a staff’s birthday next week. Sadly, I haven’t received it yet and have no way of tracking it down.

8. I am grateful I was able to get through a few intense days full of emotional, visual and bodily flashbacks thanks to the support of some trusted staff. I am grateful these few staff are still there and, though no-one can predict the future, they don’t intend on leaving.

9. I am grateful for my PRN quetiapine. It helped me calm down on Tuesday, when I was having a particularly rough evening.

10. I am grateful for my journaling app, Day One. I picked it up again and finally figured out how to use tags properly in it. I also transferred a template from Diarium, the other journaling app I’d been using. One of the good points of Diarium is that it has its templates available in other languages than English, but other than that, I think I prefer Day One after all. I am really hoping I can make journaling a habit again.

What have you been grateful for?