Because I’d Had a Stroke…

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.

What If I Lose My Care?

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

A Letter to Myself Five Years Ago

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self

#WeekendCoffeeShare (January 30, 2022)

Hi everyone. I’m extremely late joining in with #WeekendCoffeeShare this week. I already had all my coffee for the weekend, in fact, so the title of my blog post is rather off, but oh well. The linky’s still open for another nine hours, so I’m going to take advantage of it and participate. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing that the weather is slightly better than it was last week. It’s warmed up a bit, at least. That being said, we’re supposed to get rain all of next week, so I’m probably still not going out much.

If we were having coffee, I’d tell you that today is my father-in-law’s 65th birthday. Retirement age is now 67 here I believe, so it’s not significant in that sense. At least, my father-in-law is keeping his dentistry practice until he’s 67. My husband did buy him a beer and I sent him a text, but that’s as far as birthday celebrations go, I think.

If we were having coffee, I’d share that I’ve been creating some quite interesting polymer clay things lately. One is a flower fairy, another a kawaii pig pendant and another a daisy. That daisy didn’t turn out as good as I’d like, but my husband did say he liked the fairy. I haven’t baked any of the things yet.

If we were having coffee, I’d use the rest of my post to whine about how my anxiety is still through the roof. I hardly slept at all Friday night. Then yesterday, I had an okay day until in the evening a fellow client started screeching. I tried to get the staff’s attention but they wouldn’t react until I grabbed the other client by the arm, then only told me that said client, who is non-speaking, couldn’t help her behavior. I’ve been feeling extremely unsettled and unsafe in my current care home ever since. I am all the more triggered because staff keep repeating that I’ll likely feel unsafe in any other place. They probably say it to mean every other place has its drawbacks too, but I take it to mean that my anxiety is my problem and I’m the one who needs to change so I just need to suck it up and stop complaining.

I’ve also been thinking about how I had fewer crises when living with my husband than now that I live in the care facility. Isn’t this telling? I mean, doesn’t this mean that I should get a kick in the butt and go back to living semi-independently? Granted, I had far fewer moments of joy too, but I’m not sure that matters if I was less dependent back then. Isn’t the goal independence, after all? Eek, that scares me, and that in turn should be quite telling, right? I’m probably just one giant mess of a dependent, manipulative, attention-seeking monster.

Okay, if we were having coffee, I’d end on a positive note and say I had a delicious tuna wrap today when going to the Subway drive-through for lunch with my husband. I also had one half of a Bueno candy bar, as my husband had bought it at the supermarket. I originally wanted to refuse as it isn’t on my food plan, but the dietitian had said exceptions are okay.

How have you been?

Autism Diagnosis and Rediagnosis: Do Labels Matter?

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.

My Worst Fear

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

Nurse Practitioner’s Appt This Afternoon

I had a brief meeting with my nurse practitioner this afternoon. Even though it was only half an hour, we discussed a lot of things. First we made concrete plans for me to start the topiramate. Like I said before, I would need to be on the injectible birth control for two weeks before I could start it. That would be next Thursday, but I proposed I won’t start with the topiramate until the Sunday after that, July 4. That way, I won’t be just starting out when I go to Lobith on July 3. This was okay with my nurse practitioner and he’d make sure the pharmacy would get it ready on time.

Next, we discussed my bloodwork results. In the part that measures metabolic health, nothing worrisome was found. I asked about my kidney function and first my nurse practitioner said that unless your estimated GFR is below 60, it’s no reason to worry yet. Mine was 81. He checked my previous lab results. My estimated GFR was 71 in 2019 and 82 in 2020, so there’s not a clear decrease either.

He also complimented me on my cholesterol level, which was completely normal. Of course, there is only so much you can do about high cholesterol, but apparently I’m doing what I need to. It probably helps that I don’t drink and try to eat a relatively healthy diet.

Then the other page showed my blood level for my antipsychotic aripiprazole and its active metabolite. These were quite high. This means that side effects may outweigh the effectivness of the medication. While I don’t experience any major side effects, we will try to lower my aripiprazole dose in the not-too-distant future. That’s been a long-time wish for me anyway.

Then we got to discuss my crisis last week and my conversations with my husband. My husband had suggested I might have dependent personality disorder and I eventually thought he was right. Of course, in my mind, this led to all kinds of additional conclusions that my husband hadn’t mentioned, like my not having trauma-related issues and my not even being autistic and my being one giant manipulator.

My nurse practitioner said that DPD rarely if ever goes alone and that he wonders whether it even is a valid diagnosis. It is according to DSM-5, of course. He added that this is one of the most negative diagnoses to give someone. My nurse practitioner obviously didn’t mean my husband, as he didn’t really try to diagnose me at all, just wanted to give me food for thought. We will further discuss my issues with dependency in the future.

Overall, it was a good appt. As my nurse practitioner hadn’t read the E-mails we (meaning my inner people) had sent him over the weekend, we didn’t go into those specifically. Those E-mails had included a lot of self-loathing and self-doubt, including about our possible DID. I did explain about the dependency issue, like I said above. He also made sure I’m no longer in actual crisis. I confirmed this. This means I no longer need more frequent contact with the mental health team than I normally have.

#WeekendCoffeeShare (June 20, 2021)

Hi everyone on this sunny and comfortably warm Sunday. I didn’t join in with #WeekendCoffeeShare last week again. In fact, I haven’t been motivated to write much at all over the past week or so. Today though, I’m trying to get out of my rut and join the Coffee Share community again. I just had my afternoon coffee and will probably take a soft drink break midway through this post. If you’d like a drink, feel free to get one and let’s catch up.

If we were having coffee, I’d share that the weather over the past week has been beautiful. It was even a little too hot for my liking on Wednesday and Thursday and the nights were uncomfortably sweaty. However, I’m liking this much more than the rain we had over the month of May. We did get some thunderstorms during the night though, which scare me.

If we were having coffee, I’d share that I went to the doctor with my lower abdominal pain that I’ve had for about a week now. I wrote about this on Tuesday, but hadn’t been to the doctor at that point. I went on Thursday and, even though the urine sample I’d sent off for checking, didn’t show an obvious UTI, I did get antibiotics just in case while the sample is being further cultured. The doctor explained that it’s unlikely I’ll develop resistant bacteria, as I hardly ever take antibiotics. I am also to take paracetamol for the pain.

If we were having coffee, I would tell you that I’ve been in a bit of a crisis over the last few days. On Thursday, while I was still in quite a bit pain, my care facility’s manager came by to inform me that I cannot get more support than I get now. I realize it may seem silly to get into a crisis over this, but I’ve been struggling with major anxiety lately and was really hoping that more support could help me.

With respect to the anxiety, my husband tried to be supportive, but I ended up being triggered by some of his words. Like, he said he thinks I might have dependent personality disorder. This was the exact diagnosis I got in the psych hospital in 2016 and which was used as an excuse to kick me out. I don’t want to be kicked out of long-term care. I guess that proves I’m just being dependent though, as like I’ve mentioned before, I wasn’t dying living with my husband.

My husband tries to encourage me to do more things independently. While really I would like to be able to, the activities he mentioned (showering, for example) give me a ton of overload even now that my staff help me. Then again, who knows this isn’t just anxiety and dependency either? Apparently I’m not able, in my screwed mind, to make that judgment myself.

If we were having coffee, I’d share that I’m almost certainly going to start taking the topiramate in early July. I started the depo-Provera injectible birth control last Thursday and I will be able to start the topiramate once I’ve been on this one for two weeks. Now I’m only hoping the antibiotic won’t mess things up again.

If we were having coffee, lastly I would share that today, my one-on-one staff took me to visit her family’s horses. I loved petting the horses. One of them kept reaching for my lower abdomen. The family member whose horses these were, explained that she goes for the person’s body part with the most tension. I guess she’s right.

How have you been?

Disagree

Today’s prompt for Five Minute Friday (#FMF) is “disagree”. Initially, I was going to write a post about how (lack of) open disagreement with others was used against me. When my then psychologist diagnosed me with dependent personality disorder in 2016, she thought that my lack of open disagreement with many of her controversial opinions, proved I had this condition. It honestly to me proved that she was in authority even though she had no clue what she was doing.

I eventually deleted that draft and started over, but I still want to write along those lines.

In Christianity, we are often taught to not just respect, but obey authority. Children are expected to obey their parents in everything. Wives are expected to submit to their husbands.

As a survivor of childhood trauma as well as many abuses of power, I struggle with these commands.

That being said, the command to be obedient as a child and submissive as a wife, does come with its respective obligations on the part of the parents and husband. In Colossians 3:21, Paul writes for example: “Fathers, do not embitter your children, or they will become discouraged.” In other words, the Bible is not a reason for harsh treatment and abuses of power. Besides, of course the Bible does not say anything about people in modern-day, informal authority positions, such as the aforementioned psychologist.

Now, five years on, I am very happy that I eventually did stick up for myself and sought an independent second opinion on that diagnosis. Then I applied for long-term care. Now that I have the right people (loving, respectful people) around me, I no longer need to fear authority. I can respectfully disagree with people, whether Biblically I’m supposed to submit to them or not. I am still working on feeling confident in my role as a grown-up woman. God and His Word help me on this journey.

Okay, this post took me much longer than five minutes to write, as I had to look up what the Bible actually said and also because I got distracted several times. I hope that’s okay.

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

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.