Because I’d Had a Stroke…

Posted on by Astrid

I couldn’t possibly be autistic, my psychologist said, because I’d had a stroke as an infant and that somehow precluded a diagnosis of autism. Never mind that autism is genetic and said stroke supposedly didn’t change my genetic makeup to make me neurotypical. I, however, had to be diagnosed with acquired brain injury-related behavior change instead, but then again I couldn’t either, because I was too young when I sustained the stroke for my behavior to be considered as having changed either; after all, a six-week-old infant hardly shows any behaviors that would be considered significant in an adult. For this reason, I ended up with just some regular personality disorders, specifically dependent and borderline PD. Never mind that these have their onset in early adulthood and I’d shown symptoms since childhood. As it later turned out, my psychologist’s reason for changing my diagnosis had nothing to do with logic and everything with her wish to kick me out of care.

This post was written for the Six Sentence Story link-up, for which the prompt word is “stroke”. It isn’t completely factual, in the sense that, though my psychologist kept referring to what happened to me at six weeks of age as a stroke, it was actually a brain bleed. That doesn’t change the rest of the story though.

Benzos As a “Bandaid” for Serious Mental Illness: My Experiences

Posted on by Astrid

Earlier today, Ashley of Mental Health @ Home wrote an interesting article about the role of benzodiazepines in mental health treatment. While benzos can be useful as short-term treatment or PRN medication for panic disorder, generalized anxiety disorder, social anxiety or insomnia, they are often used as a go-to “bandaid” med for all kinds of mental health conditions. And by “bandaid”, I don’t just mean short-term.

The first benzodiazepine I was prescribed, was the sleeping pill temazepam (Restoril) by my GP in 2006. I was suffering with significant insomnia, but really I was suffering with what I now know is a combination of the onset of autistic burnout and my dissociative shell cracking, if that makes sense. I was given ten pills to use over the course of a month at least. I took six weeks to use them up and refused to get a refill even though my staff at the independence training home nagged me about it.

Then, once in the psychiatric hospital a year later, I used a number of different benzos, one after the other, mostly for sleep too. I however also got put on oxazepam (Serax) as a PRN medication for my agitation. Whenever I took it, I’d become hazy, fall asleep for an hour or so and wake up just as agitated as I was before or more so.

At the time though, I was seen as just autistic if that at all. More so, I was seen as a manipulative, challenging pain in the neck of the nursing staff. It hadn’t been come to the surface yet that I was a trauma survivor and, if it had, no-one cared.

Benzos can cause dissociation to worsen in people with dissociative disorders. Indeed, I find that I do become more fuzzy and I really don’t like it. Benzos can also cause people with borderline personality disorder to become more irritable or impulsive. While I personally haven’t noticed I become particularly aggressive on benzos, like I mentioned above, after the first effects wear off, I do notice I become at least as irritable as I was before taking the medication. I used to attribute this to the fact that the reason for my agitation wasn’t solved by my taking a pill.

After all, one thing that Ashley doesn’t cover is the fact that people with severe mental illness who get prescribed benzos as bandaids for agitation, may very well have good reason to be agitated. I found that often the nursing staff in the mental hospital weren’t following my care plan or my crisis prevention plan at all and, when I got irritable as a result, I was quickly directed to take my Serax.

All this took place in 2007 or 2008, before I was diagnosed with DID or PTSD or BPD for that matter. Once diagnosed with these, I still ended up with a prescription for lorazepam (Ativan) though. In fact, I at one point took it at a relatively high dose of 3mg per day for several months. Thankfully, my withdrawal symptoms once quitting cold turkey due to a miscommunication with my psychiatrist, were physical only and I was able to go back on it and taper slowly soon enough.

Currently, I do have a prescription for lorazepam as a tranquilizer for when I have a dental procedure. Now that I am thinking about all the things I read in Ashley’s article, as well as what I’ve been discussing with my psychiatrist recently about my fear of losing control, I’m not even sure I’m going to take the medication when the time comes to have dental work done. Which, I hope, isn’t anytime soon.

Most Relaxed When I Am Slightly Distressed?

Posted on by Astrid

I had a meeting with my nurse practitioner today to discuss my topiramate. Like I mentioned last Sunday, the increased dosage isn’t doing what it should. I was experiencing slight tingling in my hands and feet and, more annoyingly, increased drowsiness. Moreover, the medication wasn’t working for my hypervigilance; if anything, it was making it worse. The slight tingling in my hands and feet has decreased to the point of almost disappearing over the past few days. The drowsiness has not. Neither has the hypervigilance.

A theory I came up with recently, in a conversation with the care facility’s behavior specialist, is that my ideal level of alertness is really slight distress. In terms of the care facility’s signaling plan, phase 1 rather than 0 is really when I’m most relaxed. The reason, in fact, is that relaxation scares the crap out of me because it includes a sense of loss of control.

I am reminded in this respect of my last surgery as a child, when I was eight-years-old. I clearly remember going under the anesthesia – I had refused a tranquilizer to calm me beforehand – and I also vividly remember keeping on talking, even when my speech became slurred, up till the moment the anesthetic knocked me out. I was deathly afraid of letting go of my control.

I am also reminded of my fear of going to sleep, which goes back to early childhood. It may in part be related to my trauma-related symptoms, because of course my traumas started as early as infancy. However, I wonder whether this is also somehow related to the fear of losing control.

I once heard that benzodiazepine tranquilizers are no good for people with borderline personality disorder, precisely because the anti-anxiety effect causes aggression in them. I am not sure whether my current diagnosis includes BPD or not, but something similar might be going on with me. I don’t generally become aggressive when I’m under the influence of tranquilizers. However, as my nurse practitioner said, this thing does show that alertness and distress are not some linear thing on a scale from -2 to 3 (on my care facility’s signaling plan) in real life.

The bottom line is that we don’t yet know what to do about my topiramate. We’ve so far decided to wait another week or two to see if, since the drowsiness should decrease with time, this will cause the positive effects to start becoming noticeable. If not, we may go back to my old dosage, but I’m not yet sure what to do about my PRN quetiapine then. After all, we upped my topiramate in hopes that I could do without quetiapine then. Right now, I’ve felt like I would’ve needed a PRN medication quite regularly, but I’m trying to suck it up for now. That’s pretty hard. I’ve had a few almost-sleepless nights over the past week and am pretty anxious most evenings. But yeah, I’m muddling through. Thankfully, my nurse practitioner did give me an extra appointment next week to check in on the meds.

Autism Diagnosis and Rediagnosis: Do Labels Matter?

Posted on by Astrid

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

I’m Not Broken (And Neither Is Anyone Else)

Posted on by Astrid

A few days ago, I got a notification on WordPress that someone had liked a post of mine called “People Aren’t Broken”. It was probably on an old blog of mine and I can’t remember exactly what the post was about. From what I remember, it was written in response to a person being officially diagnosed as autistic and seeing this as a reason they weren’t “broken”.

Indeed, before my autism diagnosis in 2007, I always thought I was “broken”. Same once my autism diagnosis got taken away in 2016. I still had a personality disorder diagnosis (dependent personality disorder and borderline traits), but I believed strongly in the stigma attached to it. That wasn’t helped by the fact that my psychologist at the time used my diagnosis to “prove” that I was misusing care. I wasn’t.

Today, I found out people applying for benefits are completely screened by some kind of information gathering agency. It made me worry that the benefits authority or long-term care funding authority will do the same, even though I already have both.

It’s probably the same internalized ableism (discrimination against people with disabilities) speaking up that tells me that, if I don’t have a “legitimate” disability (like autism) that warrants me getting care, I’m just manipulative and attention-seeking and generally broken. I am not. And neither is anyone else. Including those who actually do have personality disorders.

This post was written for today’s Five Minute Friday, for which the prompt is “Broken”. Of course, I could have (should have?) written a more spiritual post and, from that perspective, everyone is in fact broken. What I mean with this post, though, is that there’s nothing that makes certain people broken based on disability or diagnosis.

Free to Belong in Long-Term Care

Posted on by Astrid

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

Book Review: Let Me Go by Casey Watson

Posted on by Astrid

Last week, I found out Amazon.nl now accepts iDEAL, the Dutch payment method via your bank account. Unfortunately, as of yet, it doesn’t accept this method for digital purchases such as Kindle books. I didn’t realize this until I had already bought a book with my husband’s credit card. Honestly, I think it’s stupid that they won’t accept iDEAL for digital purchases, but oh well. Anyway, looking back maybe I should’ve purchased a book that isn’t on Apple Books, but I ended up purchasing Let Me Go, Casey Watson’s latest foster care memoir. This book came out last August, but I wasn’t really interested in reading it up till now. Read on to see what I thought.

Summary

Let Me Go is the powerful new memoir from foster carer and Sunday Times bestselling author Casey Watson.

Harley, 13, has been sectioned under the mental health act after attempting suicide. She was spotted climbing the railings on a footbridge that crossed a busy motorway and pulled to safety by a member of the public. After six weeks in hospital, social services are looking for a short-term placement so she can be kept safe while family therapy takes place. Harley has a family – a widowed mother and an older sister, Milly, who left home with her long-term boyfriend just over a year ago. There is no prospect of Harley going home just yet though, as her mum, who has learning difficulties and addictions issues, feels she cannot cope. So she arrives with Casey and Mike under a twenty-eight day care order.

As Harley tries to hurl herself out of the moving car on the way home, it quickly becomes clear she is in urgent need of help. Three weeks into the placement, after Harley has made various attempts to abscond, it seems like zero progress is being made. Then all of sudden there is an unexpected breakthrough, and light at the end of a long dark tunnel, but only once Harley is finally able to share the truth about the abuse she suffered at the hands of a very dangerous man.

My Review

This book is a sad look into the errors of the care system. Harley is deemed “care-seeking” (the politically correct term for attention-seeking) by the mental health professionals and is, for this reason, refused mental health care even though she’s clearly at risk. I mean, I honestly don’t feel that anyone in their right mind would make multiple even half-hearted attempts at suicide. In fact, I’m so happy the mental health system here in the Netherlands at least allowed care based on “adjustment disorder” (serious distress due to environmental circumstances) back in my day. It doesn’t anymore, unfortunately.

I was, at first, convinced Harley was at least at risk of developing emotionally unstable (borderline) personality disorder. This can’t be diagnosed in children her age, but it sure seemed she would meet the criteria at some point. BPD is, though, usually a trauma-based condition. So is Harley’s condition, as it turns out.

I had lots of sympathy for Harley, even as Casey and Mike almost lost it with her. This is in part due to the similarities between her experience and mine, but also due to Casey’s caring writing style.

Still, the book dragged a little at first. That’s probably to illustrate how little progress was made at first. Once Harley’s real situation is clear, things after all move more quickly.

At the end, Casey explains some of the issues with the 28-day care order. This was really interesting to read.

Overall, I really loved this book. I should’ve read it as soon as it came out.

Book Details

Title: Let Me Go: Abused and Afraid, She Has Nothing to Live for
Author: Casey Watson
Publisher: HarperElement
Publication Date: August 6, 2020

Read With Me

What Recovery Means to Me

Posted on by Astrid

Yesterday, one of the daily word prompts here on WP was Recovery. I didn’t see it till it was already time for me to go to bed, so I’m writing about this word today. Today, I am sharing with you what recovery from my mental health conditions means to me.

First, there are a few things recovery doesn’t mean to me. Recovery isn’t the same as being happy all the time – that’d be an unrealistic goal. It also isn’t the same as independence. I don’t intend on ever living independently again and there are few things with respect to life skills I’d really still want to learn.

Recovery does mean no longer being scared when I’m able to do something independently. Currently, I constantly expect people to overestimate my abilities, so when I can do something independently, I think people will expect me to do it all the time.

Similarly, recovery means no longer being afraid of my feelings, both good and bad. Affect phobia is a thing, you know? I currently tend to dissociate from my feelings a lot. I also often counter joy or sadness with anger, because that’s the easiest emotion for me to express.

Recovery means having a relatively stable sense of self. I don’t necessarily want to integrate all alternate parts of my personality, although it’s okay if it happens spontaneously. We do want to achieve cooperation among ourselves. This also means being able to accept the seemingly opposite sides of me.

Recovery means, as a result of the above, no longer needing to rely on negative coping strategies such as self-harm, rage or impulsive behavior. I will no doubt still have times when I indulge into an unhealthy habit such as overeating or buying stuff I don’t need. That’s okay, since I don’t think total self-control is a realistic goal. I just don’t want to use these as coping skills when feeling overwhelmed, and I no longer want to engage in self-harm at all.

Lastly, recovery means no longer expecting people to abandon me if they know the real me. Currently, I have such a negative self-image that I believe any positive aspects of me are a façade and at the core I’m so wicked no-one should want to be associated with me. Overcoming this is probably the hardest thing to achieve, as expectation of abandonment is such an ingrained thought pattern. I really hope to someday stop seeing myself as one giant manipulator though.

In addition to the word prompt, I am linking up with #LifeThisWeek and #SeniSal.

In Crisis Yet Again #Blogtober20

Posted on by Astrid

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

Empathy

Posted on by Astrid

I’ve been thinking about empathy lately. A few weeks ago, I wrote that I have been looking at my personality from a highly sensitive person or empath theory perspective. Though this is still somewhat fitting, I indeed experience this strange mix between low empathy and hyperempathy.

I mean, I pick up on the general atmosphere in a room pretty easily. I also absorb others’ emotions. I feel when other people are sad or angry in distress. I cannot pick up on happiness as easily, but I’m learning.

Then again, when presented with a social situation, be it in theory or in real life, I show very little empathy according to neurotypical standards. I have absolutely no idea how to articulate how people are feeling.

I recently saw a post by Ashley on alexithymia. Ashley contrasted alexithymia with borderline personality disorder, in which people are overly emotionally sensitive. Well, I have both. Or maybe I just have the autistic women’s general mix between high and low empathy.

The interesting bit about alexithymia is, when being assessed for it in 2017 as part of my last autism assessment, one of the scales was on interest in talking about emotions and such. I scored normal if not high on that one. Similarly, when taking personality tests like those based on the MBTI, I usually score higher on feeling than thinking. That’s because I somehow want to see myself as a sensitive person. That doesn’t necessarily mean that I am though. Like I said before, my husband sees me as an obvious INTJ.

My community psychiatric nurse signed me up for a psycho-education course on autism this past week even though I know quite a bit about it already. Looking over all the criteria, I thought: “That must be so hard to deal with… Oh wait, that’s supposed to be me.” There was a bit about lack of empathy too and that made me feel awful. As much as I “wanted” an autism diagnosis when last assessed for it, I don’t want to be seen as having low empathy.

This post was inspired by today’s RagTag Daily Prompt.