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.

Five Trendy Foods I Hate #5Things

Okay, I’m a day late with my contribution to this week’s Five Things. This week’s theme is food fads you hate. Like I said a few weeks ago, I got “only” eleven points on the picky eater test my husband had found online. Still, I’m quite a picky eater. I also don’t really know food trends, so some of these might not actually be food fads.

1. Mash. Okay, firstly, this isn’t really a trend. Mashed potato has been a popular food for probably as long as potatoes have been affordable here in the Netherlands and that’s as long as I and my parents and probably my grandparents too could remember. Mash isn’t even a holiday food; I bet that the average Dutch family eats some variety of it several times a week. Here at the care facility, I get mashed potatoes about four times a week if I don’t put mash on my “dislikes” list.

Speaking of the dislikes list though, I honestly can’t stand most things passing for meals here. I mean, seriously, cooked but otherwise not-seasoned beans as a vegetable?! And if you put those on your dislikes list, you also won’t get chili con carne. Thankfully, now I and several other clients get to pick our meals from a menu.

2. Celery. Okay, I will eat a little bit of it in a salad or in my mother-in-law’s lasagne. Other than that, I flat out refuse to eat it. My care facility’s meal service considers boiled celery a valid vegetable on its own too.

3. Ginger. Not sure this is a food trend anymore, but I’m pretty sure it was claimed to be some type of superfood some years ago. I’ve tried it, but honestly it just isn’t for me.

4. Raw cocoa. I can’t even stand dark chocolate, so I honestly can’t imagine liking this.

5. Sugar-free candy. This isn’t necessarily because I don’t like its taste, but because sorbitol and manitol both set off my IBS pretty bad.

Okay, this was harder than I thought it would be. After all, I do like most acclaimed superfoods, such as chia seeds, almond milk and acai. That being said, if I had to list five foods in general that I dislike, this’d be a list of food groups.

What about you? What food fads do you dislike?

#WeekendCoffeeShare (June 4, 2021)

Hi everyone! I didn’t participate in #WeekendCoffeeShare last week, but today, I really want to. Even though it’s nearly 9PM, I honestly still crave coffee. So let’s grab a coffee or other drink and let’s catch up.

If we were having coffee, I would share that the weather has been great here over the past week! I mean, right now I’m almost soaking in my own sweat and wishing it could be a little cooler, but it’s much better than all the rain we had during most of May.

If we were having coffee, I would share that, due to the warm weather, I was able to meet my step goal every day of the week so far. In fact, by yesterday evening, I’d gotten in more steps than during the entire week last week. Woohoo!

If we were having coffee, I would share how much I’ve been enjoying nature lately. On Wednesday, I heard a chorus of frogs when walking beside the local canal. Unfortunately, I didn’t have my phone with me and, when I did later that day and yesterday, they weren’t as loud. I still fully intend on capturing some nature video sometime soon.

If we were having coffee, I would share that today, the water system in my care home had to be cleaned professionally because legionella bacteria had been found. It scared me a little, both the contamination and its associated risks, as well as the method of cleaning, which apparently involved chlor gas. I mean, we weren’t allowed in the building while the cleaning took place, but I somehow got it in my head that I’d be forgotten. I wasn’t, of course.

While we had to be outside of the building for the day, some of my fellow clients went to the day center. The staff proposed I go with some other clients to a monkey zoo called Apenheul, which is in the city of Apeldoorn, about a 45-minute drive from Raalte. I initially didn’t want to go, as I felt I’d just be overloaded. Since I would have one-on-one support for the entire day, my staff said I didn’t have to go if I didn’t want to and could decide this morning to sit in the day center or do other activities. My husband tried to persuade me to go anyway and so I did. I didn’t join my fellow clients and took a shorter route through the zoo. Overall, it was a good experience. My one-on-one took some pictures with my phone. Unfortunately, the monkeys didn’t make many sounds.


If we were having coffee, I’d tell you that I might finally start my topiramate next week. At least, the GP figured out my options for going on a different birth control (because topiramate blocks oral birth control) and okay’d my going on the depo-Provera injectible birth control. She said that she’d get back to my staff next week to make sure I can start it. Thankfully, a nurse at my care facility will be able to administer it. Please everyone pray that this means I can start the topiramate soon. I really could use some relief from my PTSD.

If we were having coffee, lastly I would however share how effective learning to be present has been for me lately. This is an exercise I found in the book Coping with Trauma-Related Dissociation and it’s really quite helpful. I haven’t yet been able to practise it when very distressed, but when I’m at a moderate level of distress, it does help.

How have you been?

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.

The Shifting Image of My Care

In September of 2006, when I was still blogging on DiaryLand, I wrote an entry about seeing my life in black and white. I meant not just my life in general, but my care needs in particular. I wrote said post in response to a meeting I’d had with a psychologist several weeks earlier because my behavior at the training home I lived in at the time was spiraling out of control. The psychologist asked me where I saw myself in three years’ time, referring to care needs.

In my response on my blog, I said that I constantly had two images in my mind about what my life would be like, one positive and one negative. These were represented by the two most important alter personalities I had at the time, Carol and Jane.

Jane was fiercely independent. She wanted to live completely on her own without any support, except for maybe a weekly visit from a person to read her mail and the occasional help with deep cleaning.

Carol, on the other hand, saw herself as needing more support. I, at the time, made a point of clarifying that my “negative” image didn’t mean I needed 24-hour care, but that I needed significant help beyond that considered “normal” for someone who’s just blind.

Six months later, I had already discovered that the positive image wasn’t going to come true, yet I shifted my two images. I started to believe that the “good” outcome would be the situation I would live in at my student apartment, which included sixteen hours of support a week. The “bad” image, then, became needing 24-hour care.

You all probably know that the “bad” image eventually came to be true. When I wrote about the 2006 post on my original WordPress blog in 2009, I said that the situation couldn’t get much worse than it had been already at the locked unit. If another three years later, it was worse, I reckoned that’d mean I was in prison or a homeless shelter and hence wouldn’t have access to the Internet.

It didn’t get worse, of course, right? Or did it? I mean, I lived with my husband for some years, but eventually got admitted into long-term care. I now have one-on-one support most of the day. And yet the images are still there.

Jane is still saying I should live independently. Not with my husband, mind you, but fully on my own. Then at least I can’t manipulate people into giving me more and more care and, by extension, cannot drive people away.

There’s another image haunting me. This image wasn’t in my mind back in 2006, or at least I wasn’t aware of it. It is the image of a girl, aged around sixteen, who was a patient in a psychiatric hospital in the late 1990s, where she had been restrained for weeks on end until her parents sought media attention. This is the true worst-case scenario I see in my mind now. But the worst part isn’t the restraints: it’s the fact that the girl was often left completely alone.

I had a few incidents of physical aggression towards staff recently. The staff keep reminding me that they realize that I don’t mean to be aggressive and that they won’t leave me if I am. I hope the worst-image alter, whom I call Rachelle, won’t prove them wrong.

Mother’s Day

Today is Mother’s Day in the United States as well as here in the Netherlands. I’ve seen lots of ads for it floating by for weeks. It’s probably been this way forever. That being said, I never quite paid much attention to Mother’s Day after getting out of elementary school. Back in the day we did the obligatory Mother’s Day crafts. Since my mother has her birthday in late April, she never quite cared (or we conditioned her not to).

I started caring again, at least a little, when I got out of the psychiatric hospital and started day activities at a center for people with intellectual disability. Most other clients still made crafty things for their mothers. I decided to join in and create something for my mother-in-law.

You see, I have never had the best relationship with my own mother. She no doubt loves me, but the way she expressed it when I was growing up is, well, kind of odd.

That plus my mother’s late April birthday means I never quite honored her for Mother’s Day. My mother-in-law though has her birthday in late November.

My own parents have always been big on independence. I understand, but they took it a bit too far given that I’m multiply-disabled. They pretty much left me to my own resources by the time I left high school at age nineteen.

My mother-in-law, on the other hand, has offered to be my informal representative with my care agency. This means that she’s invited to care plan meetings and would be appointed as my guardian should I ever become incapable of making my own decisions.

One time before I was dating my now husband, I too had to appoint an informal representative for a living facility I was on the waiting list for. I appointed my father, but wasn’t happy about it. I do trust my parents to leave me to my own resources, but I don’t trust them to be there when I actually do need them. What I mean is, I am confident that they won’t approve of restrictive care measures without my consent, but I am pretty sure they will rather advocate for me to be kicked out of care.

With my mother-in-law, I am pretty much on the same page. I am not sure she’s seen my current care plan, but she has talked about it in a way that suggests she knows and understands my need for intensive support. Even my husband doesn’t know some details she appears to be in the know about.

My husband jokingly calls my mother-in-law my adoptive mother. If adults can adopt a mother, that’s quite exactly her. I am glad to have her. And just in case you were wondering, yes, my own mother is happy for my mother-in-law to be my informal representative.

#WeekendCoffeeShare (May 8, 2021)

Hi and welcome to my #WeekendCoffeeShare post for this week. Grab a cup of coffee, be it Senseo or traditionally-made, a glass of your favorite soft drink or a glass of water and let’s catch up.

If we were having coffee, I’d share that the weather here is still all over the place and mostly not in a good way. It’s mostly rather chilly for the time of year and has been raining everyday for the past week. Tomorrow, the temperature’s supposed to rise to a whopping 25°C, but we’re still supposed to get rain and of course thunderstorms. Not fun!

If we were having coffee, I would tell you that, despite the weather, I still managed to get in an average of about 8000 steps each day. I’m still experiencing foot pain when wearing my AFO for longer than say fifteen minutes at a time, but it’s okay if I don’t go for long walks.

If we were having coffee, I would share that I am so happy that my Braille display got fixed. Like I said yesterday, it was quite the ordeal.

If we were having coffee, I’d also share that the construction crew finally came by my and my husband’s house in Lobith to get us a new front door and backdoor. They still need to fix one window, which has a crack in it. Thankfully, they weren’t as stubborn as the Braille display company, so my husband won’t have to pay for the broken window.

If we were having coffee, I’d tell you about the talk I had with my facility’s behavior specialist on Thursday. I was able to express my continuing feelings of not belonging in my current care home. This, for clarity’s sake, has nothing to do with the care home itself or the way the staff treat me, which is great. I am pretty sure it’s my search for some ideal that really doesn’t exist. After all, wherever I go, I always take my insecure self with me.

If we were having coffee, I’d tell you about the online cerebral palsy (CP) meeting I had this morning. It was a regional meeting, because in the future CP Netherlands hopes to organize them in real life. It was quite an interesting meeting. Having recently become more and more aware of my CP, I was able to feel validated by people’s experiences of the long-term effects of this disability.

I also signed up for an online workshop on aging with CP that’s being held next month. I am still considering whether to sign up for the workshop on development of people with CP from birth to age 35, as it sounds interesting despite the fact that I’m nearly 35 myself.

If we were having coffee, lastly I’d share that my husband and I are planning on having lunch tomorrow. As usual, we’re going to get a takeout lunch at Subway.

How have you been?

Recovering From Autistic Burnout

Today, the prompt for Reena’s Exploration Challenge is one word: burnout. This word evokes so many thoughts, feelings and memories in me! After all, though I was never diagnosed as suffering with actual burnout, the reason is more that burnout isn’t a DSM-IV or DSM-5 diagnosis than my not having suffered it.

That is, I did indeed not suffer the classic shutdown-type burnout where people are too exhausted to function. Rather, my burnout was more of the meltdown type, where I got so irritable and dysregulated that I couldn’t function anymore.

In 2007, I suffered autistic burnout. This is an actual thing and is more and more recognized by autism professionals too. It involves an inability to function in daily life as a whole, not just work, due to the experience of being overloaded, being autistic in a neurotypical society.

I have shared my experience of landing in a mental crisis in 2007 many times before. I was at the time living independently (though with a lot of community support) and going to university. That all changed within a matter of days: on Tuesday, I was sitting an exam, while the following Saturday, I was a patient on the locked unit of a psychiatric hospital. First, while there, I had to stabilize. I had to get back into a normal sleep/wake rhythm and regain my will to live.

Once I was no longer nonfunctioning and suicidal, however, I had to get my life back on track. My social worker thought I could go into supported housing for autistic people. I, at first, thought so too. Until I saw all the criteria relating to independence, lack of challenging behavior, trainability, etc. That wasn’t going to work out.

To be quite fair, I never fully understood my actual level of functioning until sometime in 2020. I had wanted to prove myself for so long. I had worn so many masks that hid the real, messy truth of who I am. Consequently, I constantly overestimated myself and my abilities. So did the people around me. Until one day, in November of last year, I crashed again. I probably suffered another burnout. That was when my one-on-one support was started.

There still are voices in my head telling me I could, should in fact go back to my life of before my first burnout in 2007. Back to independent living and college. Otherwise, how can I claim recovery?

The thing is, people who experience work-related burnout, usually don’t go back to their exact jobs from before their burnout either, if to the same job at all. Why should I then go back to a life I hated from the get-go? I try to see recovery from burnout not in terms of recovering lost functioning, but in recovering lost pieces of myself.

#WeekendCoffeeShare (May 2, 2021)

Hi everyone on this first Sunday of May. I still honestly can’t believe it’s May already, but it is. Today I’m joining in with #WeekendCoffeeShare. It’s still early in the afternoon, but I didn’t want to be very late with my submission. I’m having my afternoon coffee in a bit, so if you’d like one too, that’s okay. Let’s have a coffee and let’s catch up.

If we were having coffee, I’d tell you that this week was a mixed bag weather-wise. We’ve had sunshine, clouds, wind and rain. The temperatures are still below normal though.

If we were having coffee, I’d be excited to share that, on Tuesday, I went to a playground in a neighboring village with my one-on-one staff. It was King’s Day, so we had the day off from day activities, but I had a lot of fun anyway. The playground had a trampoline, a seesaw and several swings. My husband wondered why I had my shoes on while jumping on the trampoline, but this was apparently allowed.

Me on the trampoline.

If we were having coffee, I’d also share that, on Thursday, I revived my Instagram account. That is, I had posted exactly one photo some four years ago and had deleted that a few months back. On Thursday, as you can see, I uploaded a photo of a soap I’d made with my one-on-one last week. I am not yet certain I will really be posting to my Instagram more often, as I don’t think my pics are really Instagram-worthy, but well. I had fun making the soap and wanted to show it somewhere.

Speaking of soap making though, I’m planning on making a lip balm real soon. I also found out early this week that I will be able to make shampoo bars after all, since it doesn’t require saponification with lye. Now the stuff that is used to make shampoo, is quite concentrated too, but I think I may give it a try after all.

If we were having coffee, I would tell you that the physical therapist once again urged me to wear my AFO after all. It still hurts and, to be honest, I feel as though she dismisses my pain. Then again, I understand the need for the AFO. Let’s just hope my semi-orthopedic shoes will be here soon. I doubt it though.

If we were having coffee, I’d tell you that the manager came by on Thursday to inform me that the opening for a new staff had finally been filled. The new staff will start orienting at my home tomorrow. At first, she will not be working with me, but eventually she might.

If we were having coffee, lastly I would share that I spent the weekend in Lobith with my husband. We had delicious meatballs for dinner yesterday. We also had rice and cucumber. In the evening, my husband gave me a picky eater test he’d found online to see if I had a high score. I scored eleven points, he scored six. Then again, I probably was a little strict on myself, as I said for example that I wouldn’t eat celery. This morning, it was in a salad we had for breakfast and, while I didn’t love it, I didn’t hate it either. There are only a few foods I definitely will not eat. That being said though, the list of foods I’d rather avoid, is quite long.

How have you been?

Enneagram Type Four: The Abandoned Inner Child

Over the past few days, I’ve been reading more about the enneagram. Since I figured I’m probably a type Four, I read up on that type first in Helen Palmer’s book The Enneagram.

Let me say up front that Palmer doesn’t show pity for type Fours at all. We aren’t portrayed as the special snowflakes we often see ourselves as. That hurt, but in a good way.

First, Palmer describes the typical dilemma Fours face within themselves. Many remember abandonment or loss in childhood and are constantly focusing on regaining that which was lost. As a result, they constantly find themselves second-guessing themselves.

All Fours are prone to depression, though they may handle it in various ways. For example, some accept it fatalistically and succumb to despair. Others cope by constantly being on the move. That would be me, quite literally. Still others find a type of beauty in their sadness and convert it to melancholy.

When describing the typical Four’s family history, Palmer showed a bit more compassion towards us, but it was mostly through the quotes from type Four interviewees. One of them explained that she was an incubator baby and, while she was not literally abandoned, she did feel that way. Boom, that hit. I was an incubator baby too. Even though I was never literally abandoned – my parents aren’t divorced and I lived with them till age nineteen -, I often felt like I was only conditionally loved.

When I read up on core beliefs and schemas when I did schema-focused therapy back in 2013, I most clearly related to the abandonment/instability schema. I still do. I rarely felt safe with my parents and, after leaving the house at age nineteen, I moved from one temporary placement to another until I moved into long-term care in 2019.

Indeed, like the typical enneagram Four, I keep life at an arm’s length distance. I am always on the lookout for something that’s unavailable. Not really in relationships – I have been happily married since 2011 -, but in all other areas of life, certainly. I find myself constantly looking at another place to live, even though the staff and manager of my care facility have reassured me that I can stay here for as long as I want to. I think a core misconception I at least hold is that I can find happiness by chasing what’s unavailable. That’s not true, of course, but my abandoned inner child constantly looks to be rescued in all the wrong ways.

In the book The Enneagram Type 4, the author asks us how we’ve tried to rescue ourselves and how successful we’ve been. The underlying message is that we can’t and don’t need to rescue ourselves, since God is in control. God, will you please rescue me?

Joining in with the Hearth and Soul link party.