I Give In: Following My Heart to My New Care Home #31Days2022

Posted on by Astrid

Hi everyone. The optional prompt for day 2 in the 31-day writing challenge is “give”. Again, this is a bit of a freewrite as I prepare for the move to my new care home on Wednesday.

You see, when I originally moved to my current care home in 2019, it was the first place that wanted me. I also had some rather odd preconceived ideas about the kind of place I needed to be in to get my needs met. I thought that, in order to get a high staff/client ratio, you needed to be in a home for severely or profoundly intellectually disabled people. After all, places I’d known before in the psychiatric system, had a much lower staff/client ratio and so did so-called “supported housing” facilities for those with milder intellectual disabilities. (I did already know that I wanted to be in a place for people with intellectual disability rather than mental illness even though I’m not intellectually disabled, because the intellectual disability services approach is far less training-focused than that on the mentally ill.) At the back of my mind, I did know about a few homes on the care agency’s main institution grounds that catered towards those with mild or moderate intellectual disability with severe challenging behavior, but I couldn’t get the right “care profile” (on which your funding is based) for that. Not at the time, at least.

So I accepted the room at my current care home. It didn’t feel that good right from the start, but what else could I do? I was hardly getting by living with my husband. And, indeed, I don’t know what I’d have done had I had to survive lockdown while living independently. Unsuitable as this home may’ve been, it was a much-needed step on my journey.

Once I lived in my current care home, where all my fellow residents have profound intellectual disability, it became apparent pretty quickly that I needed more intensive behavior-related support than my care profile would allow for. I was first very scared when I heard that my support coordinator was applying for the highest care profile – the one I would’ve needed for the homes still at the back of my mind. After all, at first, my funding had been denied altogether. Not just the highest care profile – any long-term care funding. Were they going to re-assess me all over again? It turned out not: either I’d get the higher care profile or I’d remain in the lower category, but my funding couldn’t be taken away. Within a month, we heard the good news that my funding got upped to the highest care profile. Five months later, my additional one-on-one support got approved.

Still, I didn’t dare give in to my wish to move to one of the “intensive support” homes on main institution grounds. Not consciously, at least. When no-one was looking, I did look all over the care agency’s website to see the descriptions of their homes, all while saying I didn’t want to move.

In fact, at my care plan review last year, I said I was 95% sure I wanted to stay here and those other 5% were because of the distance to my husband. My husband said I needn’t worry, as it’s not like there are dozens of places for me to choose from. Then again, I don’t need dozens to choose from.

The home I’m moving to on Wednesday, is again the first home that wants me. However, it is also the home that stood out to me on those searches on the care agency website. It is most certainly not perfect – I know that before I’ve even moved in. However, I have my hopes up that I won’t regret having given in to following my heart.

Mental Health and Creativity #AtoZChallenge

Posted on by Astrid

Hi everyone. For my letter M post in the #AtoZChallenge, I’d like to talk about mental health as it affects my creativity and vice versa. There’s a common stereotype, and it isn’t entirely untrue or so I’ve heard, that people with severe mental illness are also often particularly creative. At the same time, autistics are commonly thought of as especially unimaginative. Now I indeed don’t have the most vivid imagination, but I wouldn’t say I have aphantasia (the inability to form mental images) either. I wish I were more imaginative and able to create things in my mind’s eye than I am though.

Anyway, my mental health is interconnected to my creativity in that, when I am depressed, I cannot usually put the effort into doing anything creative. For years while in the mental hospital, I struggled to write even one blog post a week. Now that I’m more stable, I at least find myself able to write almost daily. Still, I notice that my crafting ebbs and flows with my mood.

I also experience a huge flow of ideas sometimes, but am not always able to put them into action. For example, I have been wanting to craft a polymer clay squirrel for weeks and did indeed mix the colors I wanted to use for it, but I haven’t actually gotten down to starting on the sculpture itself.

Due to my autistic obsessiveness, I can perseverate about a particular aspect of my craft for a while, then lose interest completely. Some autistics have special interests that last for years or even a lifetime. I don’t. In my case, I am really lucky that I still enjoy polymer clay pretty much everyday nine months after having started the hobby. I do tend to change which aspect of it I’m most interested in though. Right now, of course, it’s mixing colors.

My creativity impacts my mental health in a positive way, in that I find in it a means of distracting myself from my anxious or depressing thoughts. When I accomplish something in the area of my creativity, it is a true mood booster. Conversely, of course, when I experience frustration while crafting, it can have a negative effect on my mental health.

Book Review: A Danger to Herself and Others by Alyssa Sheinmel

Posted on by Astrid

Hi all. I finally picked up reading again last week and for a change didn’t start yet another new book. Rather, I finished a book I’d been reading for a few months already: the young adult novel A Danger to Herself and Others by Alyssa Sheinmel. I’d first heard about this book about half a year ago on another blog and immediately downloaded it off Bookshare. Now that I’ve finished reading it, here’s my review.

Summary

Only when she’s locked away does the truth begin to escape…

Four walls. One window. No way to escape. Hannah knows there’s been a mistake. She didn’t need to be institutionalized. What happened to her roommate at her summer program was an accident. As soon as the doctors and judge figure out that she isn’t a danger to herself or others, she can go home to start her senior year. In the meantime, she is going to use her persuasive skills to get the staff on her side.

Then Lucy arrives. Lucy has her own baggage. And she may be the only person who can get Hannah to confront the dangerous games and secrets that landed her in confinement in the first place.

My Review

This story is told entirely from Hannah’s perspective and that makes it a very intriguing read. At the beginning, I disliked Hannah, but rooted for her at the same time. Maybe because I can relate to her experience of, as she says it, having been “born mature” and trying to outsmart the world.

I also found that Dr. Lightfoot was a likeable character. As she tries to get it through to Hannah that she may in fact be mentally ill and Hannah tries to outsmart her, I can totally feel their dynamic and I find I’m alternatingly on either one’s side.

The book has some interesting twists that I won’t give away and, though I could see some of them coming, they were still surprising enough that the story didn’t feel predictable to me.

Sheinmel says at the end that this book isn’t meant to educate about mental illness. This may be one reason we don’t get any clarity about Hannah’s exact diagnosis. I, like most readers probably, can make a guess. Because of the lack of specifics though, I don’t really know whether Hannah’s is any good representation of the experience of severe mental illness. That’s the only thing I didn’t like about this book and the reason I ended up giving it a four-star rating. Other than that, I loved this book!

Book Details

Title: A Danger to Herself and Others
Author: Alyssa Sheinmel
Publisher: Sourcebooks Fire
Publication Date: February 5, 2019

Another Appointment With My CPN

Posted on by Astrid

Today, I had an appt with my CPN again. I can’t remember all the details, but I did tell her that I had had a breakdown on Sunday. I was completely honest, sharing that I had seen and heard things that aren’t there. It was as if something was truly telling me I’m a monster and everyone will leave me. Then I saw some form of Heavenly light. I can’t describe it really and it wasn’t very vivid even then, but it was more than mere wishful thinking.

My CPN encouraged me to discuss this with the psychiatrist when I see her on the 22nd. I really hope she can help me. My husband later asked me whether it was truly psychosis or a panic attack. I don’t think I was full-on psychotic but my perceptions and thoughts were definitely headed that way. My CPN agreed.

I can’t remember whether I told my CPN, but I had these thoughts and perceptions once before. Well, a few weeks ago I had them too, back when this depressive stuff all started, but then it wasn’t that bad. Back in December of 2009, I think it was even on Christmas, it was. I had run off from the psych ward in the snow. I picked up snowballs and somehow was convinced they contained drug needles. I wasn’t depressed at the time, just batshit crazy. It lasted only for a few hours though, but came back several times within the next few months, only disappearing when I was put on Abilify.

Now I’m pretty pessimistic. After all, I’m already on the highest dose of both Abilify and the antidepressant Celexa. (I mention this because I’m pretty sure I’m depressed, whether clinically or not.) I’m hoping though that the psychiatrist can put me on some PRN medication other than lorazepam, which I can use if I fully break down again. I know I have had experience with Phenergan (promethazine, a low-potency neuroleptic) and that worked great when I was on no other medication but not at all once I was on my current regimen. Maybe the psychiatrist can prescribe me something similar but different.

I also talked to my CPN about the incessant crying. She told me this may be useful. After all, I learned from a young age on to hide all negative emotions except for frustration (because I couldn’t hide that). In fact, I was told that I was “too quick to anger”, but this was used as an excuse to force me to repress every emotion other than a smile. I hadn’t been able to cry unless I was angry first until only a few months ago. As such, my CPN reasoned that I might have a lot of catching up to do.

Working On Us Prompt: Stigma

Posted on by Astrid

For the fourth time, Rebecca of Beckie’s Mental Mess hosted the Working On Us prompt last Wednesday. I didn’t get to participate before and I really wasn’t sure I could make it this week. After all, I couldn’t load the post at first and then it was my birthday yesterday, so I was occupied all day.

The topic of this week’s prompt is stigma. I forgot the exact wording of the questions, but I’m just going to use the opportunity to ramble.

In 2013, I was diagnosed with borderline personality disorder. This is, as many sufferers will know, a highly stigmatized diagnosis. Borderlines are thought of as manipulative, unfaithful, volatile, generally awful.

It wasn’t like I wanted this diagnosis. I didn’t feel I fit the criteria. I mean, I had at the time been in a relationship for over five years and it wouldn’t cross my mind to cheat. I wasn’t particularly attention-seeking either. I didn’t go around manipulating my therapist into offering me more and more support and threatening to kill myself if she didn’t.

Yet these are stereotypes. I do have a really unstable sense of self. I do have a lot of rapidly shifting emotions. I do fear abandonment. I do self-harm. I do dissociate and suffer with stress-related paranoia.

I must add here that my diagnosis of BPD replaced DID and PTSD, which generally get a lot more sympathy. The reason my diagnosis got changed, is that my therapist went along with a DID peer support group leader’s opinion that I had imagined my dissociative symptoms.

Years later, my BPD diagnosis got downgraded to BPD traits, but I got an additional diagnosis of dependent personality disorder. DPD is characterized by an inability to stick up for oneself, passiveness and clinginess. I don’t think I meet the criteria at all. The reason I got labeled with DPD is because I thought I neeeded long-term supported housing and my psychologist thought I didn’t. She told my mother-in-law upon my discharge from the mental hospital that I can stick up for myself really well. She said that the DSM diagnosis that comes closest when a patient suffers institutionalization, is DPD. Well, there is a difference between a dependent dynamic and a dependent person.

The same goes for all personality disorders: they describe patients, not dynamics. A person with a personality disorder may be more likely to engage in a certain dynamic, but the disorder isn’t the same as that dynamic. This is the reason narcissistic abuse really isn’t a thing. Yes, people with NPD are more likely to be abusers than those without NPD, but abuse is a dynamic, whereas NPD is something affecting the patient. Let me tell you here that I’m in Facebook groups for narcissistic abuse survivors, but only because they’re the only groups that acknowledge the specific psychological damage dysfunctional families can cause.

I fought the BPD and DPD diagnoses, because I didn’t feel I met the criteria. However, this does allow the stigma to continue. Of course, I do have BPD traits. That doesn’t make me a monster. And of course I was a pain in the ass of my last psychologist. That doesn’t mean I have DPD.

I Got Approved for Long-Term Care!

Posted on by Astrid

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

A Timeline of My Mental Health

Posted on by Astrid

And yet again, I did not write for almost an entire week. My cold is gone, but now I’m fighting the strong pull of depression. I’m having really dark images in my mind, particularly at night. During the day, I can manage, but often feel too unmotivated and/or uninspired to write.

For this reason, I dug up one of my many collections of journaling prompts. A prompt that spoke to me is to draw a timeline of my life. I’m pretty sure I did this already, but can’t remember whether it was here or on one of my old blogs. I searched this blog for “timeline” and nothing came up, so if this is a duplicate post, I’m sorry. I think I wrote a timeline of my mental health on my previous blog in 2015 or 2016, but I’m just going to write one again.

2006: This was when I entered mental health services for the first time. I had my first appointment with a psychiatry resident on December 12. I was very nervous and could hardly speak a word.

2007: The most eventful year. First, in March, I got diagnosed with autism. I started treatment with a community psychiatric nurse. In July, I started my first psychiatric medication (other than sleeping pills for a while in 2006), an antipsychotic called Risperdal. This was a week before I moved out of independence training to go live on my own. In October, I stopped my antipsychotic again. In November, I landed in a suicidal crisis and was hospitalized.

2008: I remained on the locked acute unit for this entire year. Various follow-up placements were discussed, but none wanted me.

2009: I moved to the resocialization unit.

2010: I got diagnosed with dissociative identity disorder and PTSD in addition to my autism. I started medication again. First, just Abilify (an antipsychotic), but then, Celexa (an antidepressant) was added. I also was put on the waiting list for a workhome for autistic people.

2011: The workhome didn’t work out (no pun intended). Other options were unsuitable for various reasons.

2012: I started to think that maybe I could live with my husband. This wasn’t because I really wanted it (or thought I could do it), but because every other option seemed to have been exhausted and at least my husband wasn’t going to refuse to be with me for needing too much care.

2013: I moved to the hospital closest to where my husband and I had rented an apartment. This was one of the biggest mistakes I’ve made in life. First, my diagnosis of DID and PTSD got changed to borderline personality disorder. This should’ve been a warning sign.

2014: I had to change psychologists. My new one said at our first appt that she didn’t believe I’m autistic.

2015: My husband moved to our cuurrent house. I tried to arrange to be transferred again, but this was refused by my social worker and psychologist. I tried to make arrangements to be placed in supported housing in my new area, but got told that the train has to move on and I had to live with my husband.

2016: My autism diagnosis got removed and replaced by dependent personality disorder, BPD traits and depression not otherwise specified. The process by which this diagnosis came to be, was the weirdest I’ve ever seen.

2017: I got kicked out of the hospital with almost no after care. In my final week, I got some day activities arranged, but that was it. Thankfully, I did get my autism diagnosis back after seeking a second opinion. My current treatment team agree with this diagnosis.

2018: I had a mental crisis at day activities and was told I had to leave that place. Thankfully, I found another place. I started dialectical behavior therapy and movement therapy, but quit again too because I couldn’t really apply what I’d learned. I finally got put on an effective dose of my antidepressant.

2019: I currently get only suppportive counseling with my nurse practitioner. I still take the high dose of both Abilify and Celexa. Would someday like to lower my Abilify dose, but that’s something for the future.

Mental Health Ramble

Posted on by Astrid

The month of May is mental health awareness month. I’m not sure how much I can contribute to it. In fact, I only found out about it today. Since I have a cold right now, I really don’t feel like writing. Or really, I do, but my brain is too foggy I can’t come up with a coherent topic to write on. So I’m just going to ramble.

Since it’s mental health awareness month, I could share my story of how I found out I’m mentally ill. Then again, I honestly don’t know. Autism, which was my first diagnosis, isn’t a mental illness. Adjustment disorder, which I got diagnosed with upon my breakdown in 2007, isn’t really either. Thank goodness, it still qualified me for care back then. Since insurance coverage of care is diagnosis-based in the Netherlands, and adjusmtnet disorder is no longer covered, I wouldn’t have been able to get care with just that diagnosis later on. In this sense, it’s good that I was diagnosed with dissociative identity disorder and PTSD in 2010, then borderline personality disorder in 2013.

I am not even 100% sure I identify with mental illness myself. It’s really weird. If I were mentally ill, wouldn’t I need therapy? I don’t get any unless you count the meetings with my nurse practitioner every few weeks.

I don’t feel able to ask for more help on my own accord, even though I’m pretty sure I need it. I have been having a ton of weird symptoms lately and, though I’m getting by, is this really all there is to it?

I had a physical check-up at the mental health agency last February. I have a ton of issues that could be related to my mental health and/or the medication I take for it. Yes, despite the fact that I don’t even know whether I am currently diagnosed with anything other than autism, I take high doses of an antipsychotic and antidepressant. I don’t mind, but I do feel they need regular monitoring.

My psychiatrist would’ve seen me in March, at least that’s what she intended on in December. I still haven’t seen her. I do need to schedule an appt, but I’ve been taught through my years in the mental hospital that, unless you are a pain in the neck of others, there’s no need for you to see your treatment provider. I challenged this belief last year by scheduling an appot for my depression, but I”m not sure I can do it again.

Emotion Regulation Issues: Dealing with BPD Traits #AtoZChallenge

Posted on by Astrid

Welcome to day five in the #AtoZChallenge. When thinking of a topic for the letter E post, I was thinking of how popular yesterday’s post on depression had been and how it had helped destigmatize mental health. I thought of doing today’s post on another mental health topic. Emotion regulation disorder is the term sometimes used here in the Netherlands to describe a condition that’s still formally called borderline personality disorder. As BPD is neither borderline (bordering on what?) nor a personality disorder (in that there is very effective treatment for it), I think this is appropriate. Besides, emotion regulation disorder is a lot less stigmatizing of a word.

My husband asked me, after hearing what my first four posts had been about, whether I’d be making my letter E post about something positive. I said “No”, as mental illness isn’t generally seen as a positive thing. Indeed, I’m still feeling pretty depressed and this may be why I chose this topic. However, the stigma associated with mental illness can still be worse than the illness itself. If I can help remove a bit of that with this post, I’m happy.

I was diagnosed with borderline personality disorder in 2013. I didn’t like it. This diagnosis replaced two other conditions I’m pretty sure I do have as well, namely dissociative identity disorder (DID) and PTSD. I was told that BPD is a trauma-based condition too and that dissociation really runs on a spectrum from BPD to DID. This is true, but I still wasn’t happy about the diagnosis. I had a lot of internalized stigma about it. This wasn’t helped by my therapist, who pretty much assumed my BPD was causing me to make up the DID. Well, I’m not making it up.

My husband didn’t believe I could possibly have BPD. After all, borderlines are known for unstable relationships and he had been my first boyfriend. Then again, there are nine different criteria to BPD and one only has to meet five of them to qualify for a diagnosis. Symptoms I most definitely do have include an unstable self-image, dissociation and stress-related paranoia, fear of abandonment and self-harming and suicidal tendencies. I can also have bad anger issues and react impulsively. In fact, the only criterion I’m pretty sure of I don’t meet, is the one about unstable relationships. People who do meet this criterion, often engage in what is called “splitting” within the BPD community. They alternate heavily between idealizing and devaluing their favorite person (who can be a partner, but can also be a family member or even a therapist).

In 2016, my diagnosis was downgraded from full-fledged BPD to just BPD traits. I’m pretty sure I’d still meet the full criteria, though not as strongly as before maybe. It is common for BPD symptoms to lessen as a sufferer gets older.

I prefer to refer to my BPD traits as emotion regulation issues, like I said. Not only does this sound less stigmatizing, but it feels more true to what I experience. I do experience, after all, very strong emotional outbursts. These can be of anger, but more recently also sadness or fear. I also find it hard to distinguish emotions and tend to express every strong emotion as anger.

Like I said, BPD, unlike other personality disorders, is treatable. The most evidence-based treatment is dialectical behavior therapy (DBT). DBT combines cognitive behavioral strategies with mindfulness. I tried it last year, but was finding it hard to pay attention in therapy and carry over what I learned from the manual into real life. I do however still try to apply the skills.

Depression: What It Feels Like #AtoZChallenge

Posted on by Astrid

Welcome to day four in the #AtoZChallenge. Today I am once again struggling to find the motivation to write. I also didn’t think up a topic for today until just now. Today’s topic is depression. Most people will have some basic knowledge of it, so this isn’t going to be a primarily informative post. Rather, I am sharing what depression feels like to me.

From age seven or eight on, I experienced depression. However, in my case, its main manifestation wasn’t sadness. I wasn’t crying all day. In fact, I rarely cry unless I’ve had a meltdown. Rather, my main manifestation was irritability. This is common in children and adolescents.

However, because my most obvious mental health symptom continued to be irritability into adulthood, I wasn’t diagnosed with depression until age 30. I had some assessments for it when in my twenties, but always checked off just a little too few boxes.

When I got diagnosed with depression in 2017, I first had a screening tool administered. This tool covered some of the more atypical symptoms of depression, such as feeling like a weight is on your body, gastrointestinal symptoms, etc.

Depression to me feels like a constant heaviness on my body. I can literally feel it weighing down on my shoulders.

Another important aspect of depression is feeling low. When I was first assessed for depression in 2007, I didn’t know what the feeling of depression meant, so the psychiatrist clarified it by asking if I’m sad. The thing is though, sadness and depression are very different. Though some people with depression cry all day, most don’t feel particularly sad. It also isn’t a situational thing, as sadness often is.

Another thing about depression is that most sufferers have trouble sleeping, eating and maintaining weight, resulting in weight loss. However, in my case, I sleep too much, eat too much and gain weight.

Suicidal thoughts are also a part of depression, but most severely depressed people are too lethargic to actually be actively suicidal. When I have vivid thoughts of ending my life, I can tell it’s usually more situational and due to emotion regulaiton issues. When I’m “just” depressed, the thought of ending my life is a constant lingering presence at the back of my mind.

Lastly, a common symptom of depression is psychomotor agitation or retardation. This means people get slower or conversely more restless. I tend to experience a mixture of both, but usually when I’m purely depressed, slowness is the overriding symptom.