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.

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.

#WeekendCoffeeShare (May 23, 2021)

Hi everyone on this rainy Pentecost! Today I am joining #WeekendCoffeeShare once again. Let’s have a drink and let’s catch up.

If we were having coffee, I would share that the weather is still quite gloomy here. Like I said above, it’s been raining most of the day. It’s also pretty cold. Man, I can’t wait for summer to start!

If we were having coffee, I would tell you that this week was rather emotionally draining. On Tuesday, I found out that I won’t be able to start my new medication until at least this coming week. My care facility’s physician will be back from vacation on Tuesday and should be asked to look into the topiramate then. With some luck, I will be able to start taking it later that week.

Due to the disappointment about this and due to other triggers, I was intensely dysregulated Tuesday evening. Same yesterday. Thankfully, during the rest of the week, I have been able to stay at least out of crisis.

If we were having coffee, I would share that I’m contemplating seeking a re-assessment and possible therapy for what I think may be dissociation. I mean, I’m still unsure whether I’m making the alters up or not. Of course, on some level, I made them up regardless of whether I’ll be diagnosable with a dissociative disorder or not. What I mean though, is I’m not sure whether they are trauma-based or some result of escapism. I’m not even sure my “trauma” is real. I mean, of course it was real, but maybe it wasn’t as bad as I feel it was, or shouldn’t be affecting me as much.

I E-mailed my nurse practitioner about this on Thursday and am hoping to discuss it at our next appt.

If we were having coffee, I would share that I went to McDonald’s for lunch on Friday. I had a crispy chicken burger and fries. It was delicious!

If we were having coffee, I’d share that I was touched to the core by today’s edition of Hour of Power NL. Bobby Schuller’s sermon was on the Biblically-originating saying “Your days are numbered”. It really got me inspired to try to make a regular habit of Bible study and prayer again. I mean, I’ve so far lost only one day in the YouVersion app, two weeks ago, over the past five months. However, I notice that I’m not taking the Bible as seriously as I should and would like to.

If we were having coffee, lastly I’d share that my husband would’ve come to visit me this weekend, but he has a headache. I hope it’s gone soon. Tomorrow is a holiday too so he can come then if he feels better.

How have you been?

Scars Remind Us #WQWWC

“Scars have the strange power to remind us that our past is real.” ― Cormac McCarthy, All the Pretty Horses

Today’s topic for Writer’s Quotes Wednesday Writing Challenge (#WQWWC is “Healing”. I originally intended to post another quote, but then I had to address the fact that the source person isn’t an author. Not that I’ve read anything by Cormac McCarthy. Frankly, I just stumbled upon this quote on Goodreads by looking for quotes on this topic. However, the quote really speaks to me.

My psychiatrist’s appointment last week opened me up to a whole lot of trauma memories. Up until that point, I hadn’t thought that anyone would ever believe me again, after my dissociative identity disorder and PTSD diagnoses had been removed and everyone had basically decided I wasn’t a real enough trauma survivor at least until or unless I got re-assessed. That’s how I interpreted my psychiatrist’s insistence that I get evaluated for dissociation when I was still living with my husband. She was a great psychiatrist, but she never quite considered helping me with my trauma symptoms without a diagnosis. Then again, neither did I. Now I may even be ready, sort of, to ask for the re-evaluation myself.

The memories have been coming flooding back at me over the past week or so. I mean, I had flashbacks before, which is why the psychiatrist proposed I start topiramate, but they weren’t as bad as they are now. Unfortunately, I won’t be able to start on the topiramate until next week, as my care facility’s physician is on vacation and she needs to okay the prescription.

That being said, the fact that my psychiatrist is willing to prescribe me this medication specifically for my trauma-related symptoms, to me means she takes my trauma seriously. No-one before has ever suggested I try any medication or therapy for my trauma without my first going through the assessment process. Which, to me, means needing to prove my past and the resulting experiences are real first. Well, I can’t, because my dissociation makes me doubt my own reality.

Besides, one of my core traumas is not being validated for who I am. This has meant I’ve had to wear one mask or another, or sometimes several at once, my entire life. For this reason, I do not know who I am at all and constantly doubt my reality of experiencing post-traumatic stress symptoms.

In this sense, it is rather hard to process that most of my trauma didn’t leave physical wounds and that the traumas that did cause physical wounds, aren’t the worst ones. If my traumas had left physical wounds, there would be physical scars to remind me that the traumas were real. Now, there are mostly just emotional scars. I am still learning to validate the experience of my emotional wounds.

A Very Intense Day Today

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

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.

#WeekendCoffeeShare (April 4, 2021)

Hi everyone on this chilly and cloudy Easter Sunday. I am rather late joining in with #WeekendCoffeeShare. The reason is that I’m participating in the #AtoZChallenge too and couldn’t find the time to publish another post until today. I just had my afternoon coffee and am going to have a soft drink in a bit, so if you’d like something to drink, that’d be great. Let’s grab a drink and let’s catch up.

If we were having coffee, I’d share how much fun I’m having with the #AtoZChallenge. It is a great way of connecting with new bloggers and challenging myself to write (almost) everyday. For those who don’t know, the challenge is to write posts using each letter of the alphabet on each day of April except Sundays. This is the reason I have time to write a blog post today. My theme is aromatherapy and natural wellness.

If we were having coffee, I would share that this week was rather eventful in general. On Monday, I was very much triggered. I have been having emotional flashbacks a lot, as well as paranoid thoughts about my former clinician reporting me for care fraud if she finds out I’m in long-term care. My staff try to reassure me that I’m not responsible for my care funding. After all, my staff, the manager and behavior specialist applied for me. I am still unsure though.

Anyway, on Monday, when I was particularly triggered, I did an exercise of hitting a pillow to symbolically kick my former clinician out of my life. It was truly empowering!

If we were having coffee, I would also share that, on Friday, I had a treatment review at the mental health agency. My nurse practitioner tried to tell me that I’m already actually processing my trauma with the steps I’m taking now, such as the exercise on Monday. This validated me. My community psychiatric nurse, however, wasn’t fully sure of her role in my treatment and wondered whether she could visit me less frequently. For now, we have decided against this in order to maintain weekly appointments with mental health, alternatingly with my nurse practitioner and CPN.

If we were having coffee, I’d tell you that I finally managed to go to Lobith over the weekend. My cold is still not fully gone, but it’s gone enough that I could see my husband. We had delicious Airfryer fries, turkey and peas for dinner yesterday, as well as pudding for dessert. This morning, we had breakfast in front of the television while watching Hour of Power. It was great!

How has your week been? And how’s your Easter weekend?

Free to Belong in Long-Term Care

Today, one of Mama Kat’s writing prompts is to write a blog post inspired by the word “Free”. This definitely appealed to me, as a survivor of childhood trauma as well as abuse in the psychiatric system that continued until I was 30.

Last Tuesday marked the five-year anniversary of the opening of my current care facility. It also was the day I was here eighteen months. Five years ago, I myself still resided in the psychiatric hospital. Some of the worst abuses of power of my psychiatric hospital stay hadn’t even happened yet.

As a child, I suffered significant trauma both at home and at school. Most of it left only invisible wounds, but these are as deep as any physical wounds could’ve been.

Like I said on Sunday, my parents fought my schools, especially special ed, all the time. As a result, I endured frequent school changes and was at the center of conflicts pretty much my entire childhood. Whenever I had adapted to a school environment, I was removed again. I also didn’t have the opportunity to form lasting friendships. The feeling that I didn’t belong anywhere, was instilled in me from an early age.

When I finally moved to the mainstream high school my parents deemed best for me, I knew within a month that I didn’t belong here either. I managed to finish the grammar school program and graduate in 2005.

Then started my long journey through the adult disability and mental health care systems. My parents wanted me to go to university and live independently right away, but I asserted myself and sought help first.

I eventually lived independently for three months in 2007, but then landed in a mental crisis and was hospitalized. Over the following 9 1/2 years, I endured a lot of ongoing trauma at the hands of the psychiatric system. I eventually got kicked out of there and started living with my husband. That didn’t work out either. That is, our marriage is still strong, but I couldn’t cope living semi-independently.

All this to say, now I’m in long-term care and finally free. I am able to make my own choices now. It’s still a little hard to grasp that I am asked to sign for any restrictions to my freedom that may be needed for my safety. In the psychiatric hospital, seclusion and restraint were just shoved down my throat even though I was an informal admission. Either that or I was basically left to my own resources, since, being diagnosed with borderline personality disorder, I needed to take responsibility. Both of these extremes left me feeling unsafe.

Now, I not only am asked to sign for restrictive measures, but I am allowed to request extra support. This allows me freedom as well as safety. I am free now and yet I belong. If only I felt this way already. That may take a long while still.

Mama’s Losin’ It

PoCoLo

#WeekendCoffeeShare (March 12, 2021)

And this time I’m extremely early with my #WeekendCoffeeShare. This week was rather eventful, especially the last couple of days. I just had my afternoon coffee today. You can probably get a cup of coffee, tea or a soft drink from the staff, but I’m so glad this meeting is actually virtual.

After all, if we were having coffee, first I’d share that I’m in room-based isolation. I started having a sore throat yesterday, but wasn’t sure it was the fact that I’d just had a screaming fit or it was actually a symptom of illness. The staff on shift yesterday tried to reassure me. Today though, I woke up very sniffy. I warned the staff, but at first she wasn’t concerned this time either. After she talked to a colleague though, I had to be in room-based isolation. The staff are now wearing protective clothing when entering my room. I’m usually in my room anyway when not walking. For this reason, if I do have COVID, it’s unlikely the other clients will have caught it too, at least from me. The staff though, well, they’ve definitely been at risk.

Thankfully, one of my home’s staff is one of my facility’s appointed testers. She swabbed me right this morning and the test should be at the lab right now. Please all pray that it’ll come back negative.

As for how I’m feeling, well, I’m okay. I’m a little sick to my stomach in addition to the cold symptoms, but overall it’s manageable. I don’t have a fever and my oxygen saturation was normal too.

If we were having coffee, then I’d tell you that I didn’t have as good a walking week this week as I had last week. The reason is that, besides not being allowed out today, I wasn’t allowed outside of the home on Tuesday either. Another client had to be tested for COVID. Thankfully, his test came back negative. I heard this the next morning, but today the staff told me they’d been informed already Tuesday evening at 10PM. I asked the staff to wake me up if this happens with my test too (only if it’s negative).

If we were having coffee, I would share that I had a really productive appointment with my psychiatric nurse practitioner yesterday. The staff who’d seen the PTSD video with me last week, accompanied me. Together, we were able to explain my continuing issues with hypervigilance, flashbacks and emotional dysregulation. I was able to explain about some of my traumas, including traumatic experiences within the psychiatric system. My nurse practitioner was able to validate me from his own perspective as a former psych hospital nurse.

If we were having coffee, lastly I would share that I made a coconut-mango smoothie this morning. It didn’t taste as good as it could have and I’m not sure whether to blame my cold symptoms or the chunks of coconut that weren’t properly blended.

What’s been going on in your life?

When I Was Fifteen

One of Mama Kat’s writer’s workshop prompts for this week is to explain how a parent or sibling would’ve described you at the age of fifteen. What an interesting thing that Mama Kat should mention age fifteen!

I turned fifteen in June of 2001. By August, looking back, I was close to insane mentally. This was the summer when I first realized I had alters inside of me, although I didn’t know what they were at the time. I just heard some type of voices that were and at the same time weren’t mine.

Neither my parents nor my younger sister knew this at the time. Still, they did realize something was up, if for no other reason, then because I didn’t care about school. I had always been a pretty studious kind of child, but this changed by November or December of 2001.

In addition, I was a rather angry, moody child. I had suffered from depression on and off since age seven or so, but it was particularly bad at age fifteen. I even made suicide plans several times during that year. My parents, being the type to dismiss mental health issues, felt I was just attention-seeking, of course.

My life turned around in a sort of positive way a few weeks before my sixteenth birthday, although no-one saw either the change or how positive it was at that point. On June 16, 2002, my father called me autistic as an insult. This led me to search the Internet for autism and to discover I may be on the spectrum myself. Although it’d take nearly five more years before I was diagnosed, in part because my parents and teachers didn’t believe me, I see this as a pivotal point in my life.

The day after this, June 17, I finally disclosed to my teacher what had been bothering me over the past year. I sugarcoated it a little, not mentioning the voices or suicidality or autism for that matter. I did tell him I was struggling with being blind in a mainstream school and that I realized I had been less than good of a student lately.

My father, at the time, worked at my school. My teacher told him that I had disclosed something to him, but he refused to tell my father what it was. This led to a really traumatic experience, because my parents demanded to know too and they weren’t kind about it at all. I am pretty sure they just tried to gain fuel for their idea that I was one giant attention-seeker.

Many years later, my parents used many of my struggles at age fifteen to “prove” this very point. I can see their perspective, sort of. Thankfully though, my current professionals don’t go along with it.

Mama’s Losin’ It