We Ordered Some Beads

I’m feeling pretty uninspired to write today. I’m still feeling upset about last Friday’s meeting with the nurse practitioner. I mean, I don’t want to claim to have a dissociative disorder, even though on this blog I do sort of claim this. At least, we claim to be multiple. I’m not sure we fully are, but we’re definitely not fully singlet either.

We sent an E-mail to my assigned support worker explaining our issues with the nurse practitioner’s comments. She might forward it to my other staff and maybe the behavior specialist too. The behavior specialist replied to her E-mail from last Friday that I could ask my nurse practitioner why he thinks ACT is proper therapy for me and why he doesn’t want me to do EMDR. Some of us were pretty upset at her reply too.

Today we were upset at not being able to do much with respect to day activities. It rained all day, so we could only take one walk. Other than that, we sat in the living room or in my room. At the end of the day, our crafty part came up with some ideas. We might try making some bead jewelry. It doesn’t have to be professional-looking, but it could be cool.

So I ordered some beads at a store called Creadream. I originally intended on ordering glass beads, but ended up going with plastic ones. They were cheaper and the store had a larger variety of shapes. I got some round beads, some cubes, some rectangles and even some butterflies. Some of the purple ones were on a discounted price, so only like €0.66 for 25 grams (about 45 beads I think it said).

I also ordered some wire and elastic, including memory wire. This is a type of metallic wire that is shaped like a coil that fits around your arm. It can be used for making bracelets. I forgot to order pliers to cut and bend the wire with, but I or my day activities staff might be able to find some later. I also forgot to order a beading needle.

I think the littles will definitely enjoy working with all the different shapes and colors. Of course, we can’t see the colors, but we have some memory of what they look like. We ordered mostly purple ones, like I said, but also some pink, green and I can’t remember what else.

Now I constantly feel shame when I refer to the littles or write in first person plural or the like. I know I can’t fully be myself with mental health professionals, because they aren’t my friends, but why can’t I be myselves on here? My CPN knows the address to this blog and has occasionally read it, but yeah.

#WeekendCoffeeShare (July 5, 2020)

Hello all and a happy Sunday evening! Today I’m joining in with #WeekendCoffeeShare. I honestly crave a cup of strong coffee right now, as I’ve only had one cup so far today and it’s past 6PM. Unfortunately, I think all I can get now is decaf. Anyway, how have you been? Grab a cup of decaf, tea or your favorite type of soda and let’s catch up.

If we were having coffee, I would rant about the meeting I had with my nurse practitioner and community psychiatric nurse last Friday. I was very worried about this meeting beforehand. It didn’t go as I expected at all, but that wasn’t a good thing.

The reason we had the meeting was to decide whether I can get trauma treatment, such as EMDR. I voiced my fear that, if I tried EMDR or the like, my parts would come forward and sabotage the therapy. Instead of reassuring me or even asking further questions, my nurse practitioner said he doesn’t believe I have alters because he’s to his knowledge always seen Astrid. He added that everyone has different sides to themself.

For whatever reason, the whole EMDR/trauma therapy thing went out the window too. He wants me to do acceptance and commitment therapy (ACT). He recently trained in this and it seems this is more of a reason for him to want a guinea pig than that he genuinely thinks it’d suit my symptoms. My husband joked that it’s almost like, if I go to the hospital with a broken leg and the orthopedic surgeon isn’t on call, they’d send an oncologist to give me chemo.

If we were having coffee, I would tell you that after the meeting, my staff and I went to get fries at a snackbar. We also drove by a store to get me a large bag of sweets. I had originally intended to get cold tea too. Oh, I forgot to offer you all some of that. It’s basically herbal tea that you put into cold water and then let sit for ten minutes. It’s good.

If we were having coffee, I would also tell you that I spent a night at my husband’s yesterday. It was good. We had roti delivered for dinner.

If we were having coffee, I would tell you that despite the not-so-great weather, I did go for a walk today once I got back to the care facility. There’s a new staff who’s being trained to work on my unit and she took me for a walk. Unfortunately, it seems as though my Fitbit battery won’t charge. Maybe it’s time for a new one.

How have you been?

A College Memory

One of Mama Kat’s writing prompts for this week is to write about a college memory. I wrote about the very same topic on my old blog in 2016, some weeks after it was also a prompt on Mama Kat’s blog. I reread that post just now and was actually going to share the exact same memory. Now I don’t think most people who read my blog now, read my blog then. Still, I want to choose a different memory.

In 2016, I shared the memory of my first day at Radboud University as a linguistics major. I had a massive meltdown upon entering the lecture hall then, because I hadn’t known that there were over 200 students in there. I left and called my support coordinator, who took me to her office. This was the first time the psychiatric crisis service was called on me, but they said I wasn’t “mad enough” (my support coordinator’s words) to be admitted to the hospital.

Roughly eight weeks later, on October 30, I had my last day at Radboud University. I didn’t know it at the time, of course, since I wasn’t admitted to the mental hospital until November 3.

I had an exam that morning. It was my first introduction to language and communication exam. Passing this exam wouldn’t award me any credits, as the credits for the course weren’t applied until you passed the second exam some weeks later.

As always, I took a ParaTransit taxi to the university that morning. I think I had a meltdown right as I went into the building the exam was supposed to be held in, but I’m not 100% sure. I definitely had a meltdown when I was finished. The taxi driver driving me home threatened to dump me at the police station.

Regardless, I did sit in on the exam. Introduction to language and communication is basically a course in dissecting words into morphemes and sentences into their different components (no idea what those are called). That’s why the course was also sometimes called universal grammar.

Several months later, when I was home on leave from the hospital, I retrieved my E-mails. Back at the hospital, I sat down to read them. Among them was an E-mail from the director of studies telling me that the intro to lang and comm instructor had been missing me so had I dropped out? I also found an E-mail from administration notifying me of my grade on the exam: I scored 85%.

Several months ago, when my husband was clearing out the attic for our move to our current home, he found a letter from Radboud University. It was my provisional report on whether I could continue my studies or not. “Your studying results are grounds for concern,” it said. I’m so glad I never saw this piece before.

Mama’s Losin’ It

The Roles I Play

I haven’t been able to write much this week. I’ve been feeling really off lately. I may write more about that later. For now, I’m picking a prompt from the book The Year of You by Hannah Braime. It’s the first prompt in the book. It asks us to list the roles we play, such as daughter, sister, friend, etc. We’re supposed to think of as many as possible. Here goes.

1. I am a wife. My husband is the most important person in my life (after myself sometimes). My husband and I will be married nine years in September. The measures implemented due to COVID-19 were hard on our relationship. Tomorrow I’m for the first time in for months going to sleep at home with him.

2. I am a daughter. I don’t have the best relationship with my parents. It’s civil but distant.

3. I am a sister and by extension an aunt. I think now that my sister is a mother, we share even less common ground than before, but Janneke (my niece) is a good conversation starter.

4. I am a daughter-in-law and sister-in-law. Particularly with my mother-in-law, my relationship is good. She acts as my informal representative when needed.

5. I am a cat’s staff. I originally typed that I’m a cat Mommy or cat lady, but I think Barry sees me as nothing more than the one who provides him attention and food. Now I no longer do this, of course, as I no longer live with my husband. However, my husband says I helped socialize Barry.

6. I am a blogger. I have had one blog or another ever since 2007 (or 2002 if you count my online diary that gradually morphed into a blog).

7. I am a disability, mental health and autistic advocate. I don’t do nearly  as much advocacy work as I did some ten years ago, but I still identify as an advocate.

8. I am a long-term care client. Well, this is probably self-explanatory.

9. I am a friend. I don’t have any offline friends, but I cherish the online friendships I’ve made over the years.

These are mostly roles I play based on the relationships I have with people in my life. With respect to my interests, personality traits and opinions, I am still pretty unsure.

What are the roles you play in life?

#IWSG: Mid-Year Reflections

IWSG

Wow, can you believe the first half of 2020 is already over with? They were quite eventful six months for most of us, I guess. Anyway, it’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) gathering.

This past month wasn’t too eventful in the writing department. I was at times really motivated, but most of the time, I was a bit uninspired.

To get some of my writing mojo back, I started working in the book DIY MFA, though its author claims writer’s block does not exist. The only reason we don’t write, according to her, is that we don’t want it badly enough.

I started writing a short piece of fiction right that same evening. It was based on a writing prompt I found in a collection for July on another blog. It’s still a bit random and not worthy of publication even on this blog. I might try to edit it someday or I might not.

I’ve also been journaling and writing stream-of-consciousness more lately. I like that and it helps me keep my writing muscles active. I don’t have a word goal. One thing I learned from DIY MFA is that there is no rule of thumb or best practice on how to become a writer. I mean, Stephen King claimed you need to write 2000 words a day and read at least 80 books a year. I don’t write as much and I certainly don’t read as much. Now I don’t intend on becoming a novelist. My one published piece of writing was written in the same way I write a blog post, kind of randomly.

Still, I hope to someday publish more. As such, I hope that the publishing world will become more diverse than it is now in the future. I mean, I’ve looked at mainstream places to submit my work and I always think my story is a bit out of the ordinary for them. I can’t be sure, of course, until I submit my work and see how it does.

Not Quite a (Traumagenic) System?

I feel so awful right now. The visit from my parents went so well and this is actually confusing me. I mean, I consider some of my childhood experiences traumatic. Quite a few, in fact. How can this be the case if I have such loving parents? I mean, yes, they’re still a bit odd. My father just talked about the birds and butterflies and flowers we encountered. He didn’t ask me any questions or share anything about himself. That doesn’t make him a CPTSD-engendering parent though.

I had a dream yesterday about me needing to take the SCID-D assessment for dissociative disorders and it came back showing that I don’t have a dissociative disorder. It was probably triggered by my having read a message in a DID support group about how plurality is now something anyone can claim because of endogenic (born multiple) systems etc. We’re not an endogenic system, but can we claim to be traumagenic? Can we even claim to be a system at all?

I mean, other than online and to a few specific people who know us closely, we don’t share our names. It could just be that I gave names to different emotions or aspects of myself that I find hard to understand. This is what my community psychiatric nurse said on our last appointment. She said the consultant recommending EMDR for my traumatic experiences hadn’t recommended any type of “deep-digging” therapy. Not that I want that, but on some deep level (no pun intended), her claim that my parts are feelings, made me feel invalidated.

I told my CPN that, whichever treatment approach I try, my parts always show up and disrupt the process. She countered that we hadn’t tried EMDR yet. I know, but this approach is known to cause worsening of dissociation in those with dissociative disorders. Can it get me to “split” even more, even if I’m not a genuine multiple in the first place?

When I shared my doubts/denial on an E-mail list for DID, someone replied that I sign my E-mails with lots of different names. Well, that’s as easy as typing on a keyboard. No-one needs to have any special characteristics to be able to do this. It doesn’t prove my multiplicity. Besides, I know there are parts and they have names, but are these parts truly differentiated enough?

In a sense, it doesn’t matter. I’m not planning on seeking a DID/OSDD diagnosis anytime soon and by the time I might have overcome my fear of psychological evaluations, I guess DID has been removed from the DSM. Either that or Onno van der Hart and other scandalous therapists have given it such a bad name that no-one in the whole country will support me. And that’s even assuming that said assessment would show some type of dissociative disorder. Then again, if I’m claiming plurality for the sake of it, am I not contributing to the stigma surrounding DID myself?

In addition to the dream I had yesterday, I have recurring dreams about my parents finding out I’m in childhood trauma survivor support groups. They always confront me and my husband always sides with them. I guess I should leave those groups in case it really happens. I mean, I’m not an adult child of normal parents, maybe, but then again who is?

#WeekendCoffeeShare (June 27, 2020)

Happy late Saturday evening everyone! Welcome to another edition of the #WeekendCoffeeShare. Today is my birthday. I think I still have tompouces in the fridge, so grab a cup of coffee, tea or your favorite cold drink and let’s catch up.

If we were having coffee, I would share that I was stressed out all week about my parents visiting yesterday. As regular readers of my blog may know, my parents are big on independence and in denial of most of my disabilities. They don’t think I should be in a care facility. Like I said yesterday though, they weren’t overly judgmental. My father made a rather bad pun on the facility’s name and my mother asked whether no-one had taught my nonspeaking fellow clients to talk, but that was about it.

If we were having coffee, I would tell you about all the lovely presents I got for my birthday. My parents gave me a drinking bottle with fruit infusion filter. I’d had it on my wishlist for years and am now loving making fruit-infused water. They also gave me a spiky or hedgehog ball. My father said it looked like a virus and my husband joked that they’d gifted me corona. Lastly, they gave me some punches, which I can use in cardmaking or other craft projects. They got these as well as the spiky ball at the thrift store.

My husband gave me a sturdy bookcase for my iPhone. It’s supposed to protect your phone against dropping from 2 meters. I’d rather not try it out though.

Lastly, my mother-in-law gifted me this giant teddy bear! It’s 1.60m tall, which is even taller than I am. I love it!

Giant Bear

I’m still not sure what to call it. I initially called it just Giant Bear, because my big panda was called Big Bear and my not even that little bear stuffy was called Little Bear. Or something. I can’t remember, honestly. Then I figured I should be calling it Joenie, which is my nickname for my husband. My husband said to call it Baloo after the bear in Jungle Book. I guess I’ll call it whatever strikes my fancy at that moment. Rainbow/Sofie, the unicorn, also has two names, after all.

If we were having coffee, I would tell you I ate some delicious Domino’s pizza this evening. My husband and I had it delivered to the care facility. I had the spicy chicken pizza and so did he, as my husband usually ends up liking my pizza more if we each order something different. I loved it! Then I had some ice cream for dessert. I got a nice present from the care facility too: a Domino’s gift voucher. I already have a reputation for eating lots of yummy food, even though today was the first time I’d ordered Domino’s since coming to the care facility last September.

If we were having coffee, I would tell you that next week, I have a meeting with my community psychiatric nurse and nurse practitioner from mental health. We’re going to discuss my possibly getting EMDR treatment for some of my traumatic experiences. Now that my visit with my parents went well, I feel slightly guilty about considering some of my experiences with them traumatic, but well.

If we were having coffee, I would report on my steps as usual. This week so far, I reached just over 60K. I managed 69K last week and am doubtful I’ll reach that this week, as I’m probably going to have a lazy Sunday tomorrow.

How are you all doing?

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

What’s Up (June 2020)

Wow, can you believe it’s already the last Wednesday of the month? I truly can’t. Time flies! Today I’m joining in with What’s Up Wednesday.

What We’re Eating This Week

Well, like I said last month, I live in a care facility with food delivery, so I don’t get to meal plan. We’ve been having an insane amount of baked potatoes lately though.

What I’m Reminiscing About

Not really anything. I mean, occasionally memories pop up, but they’re usually neither pleasant nor significant to share about here.

What I’m Loving

Sunshine! The weather is truly beautiful out here. Tomorrow and Friday the temperature is supposed to rise to 30°C (86°F). That’s a bit hot for my liking, but oh well.

What We’ve Been Up To

Lots of walking! I loved taking several long’ish walks a day with my staff. Today it was a bit hot, but we managed two shorter walks anyway.

What I’m Dreading

My parents possibly being judgmental about my living situation. They will visit me for my birthday on Friday. As much as I try not to stigmatize my intellectually disabled fellow clients, I still fear they’ll feel shame.

What I’m Working On

I started working in the book DIY MFA yesterday and immediately was inspired to write a piece of short fiction. It’s not remotely good enough to go on the blog and it doesn’t have an actual ending yet, but I liked the writing process.

What I’m Excited About

My birthday! Tomorrow, the festivities will start with my mother-in-law visiting. On Friday, my parents will visit. That’s a little scary, but it’ll likely be okay. Then on Saturday, which is my actual birthday, my husband will be visiting. I invited him to get pizza delivered.

What I’m Watching/Reading

I’ve been watching Diagnosis on Netflix and reading the book by that same title, written by Lisa Sanders. I also finally started reading The Falling in Love Montage by Ciara Smyth. I’ve been excited about it ever since I first heard about it in like January. It was released earlier this month.

What I’m Listening To

I’m frequently listening to the Harp Music for Sleeping playlist on Spotify. It’s very relaxing. This afternoon, in fact, I fell into a deep sleep listening to it.

I’ve also been discovering podcasts. Early this month, I mostly listened to true crime podcasts. Now I’m occasionally listening to progressive Christian podcasts.

What I’m Wearing

A skirt and a black T-shirt. I have three skirts that are the exact same model yet a different color. As I am blind and haven’t labeled my clothes, I don’t know whether this is the blue, green or red one.

What I’m Doing This Weekend

Having pizza with my husband on Saturday, like I said. I’ll probably have a lie-in on Sunday.

What I’m Looking Forward To Next Month

Probably visiting my husband for a weekend again. Like I mentioned a few times, the visiting rules at my care facility will be relaxed come this Friday. This means I’ll be allowed to go home to my husband for a weekend again. I don’t want to right away, but I’m hopeful in July I’ll be able to go a few times.

What Else Is New

My husband has two weeks off work this week and the next. He’s getting workmen over to replace the outer doors and some other big things that need doing.

What’s up with you?

Five Things I Enjoyed During Lockdown #5Things

Today I’m joining in with the Five Things Challenge, for which the topic this week is things we enjoyed during lockdown.

Now I must say we had an “intelligent” lockddown here. Most businesses were closed, as were schools and restaurants. Many people still weren’t taking it seriously. After a week of school and business closures, on March 23, the prime minister announced stricter enforcement of the stay-at-home order. That’s when he invented the term “intelligent lockdown”. The care facility implemented a no-visitors policy after this. Still, there were no curfews or rigid restrictions on where or when you could be outside. As such, my list may be a little different from that of those who experienced a complete lockdown. Here goes.

1. Walking. Like I said, we didn’t have a curfew. Still, according to Fitbit, in the Netherlands too steps taken dropped significantly during lockdown. I, however, was able to increase my steps a lot.

2. Blogging. It’s great that the #AtoZChallenge was in April, in the midst of lockdown. I truly enjoyed blogging almost everyday during the strictest stay-at-home orders.

3. Reading. Similarly, suddenly I had time to read. Not only did I not go visit my husband or need to fulfill other obligations, but the day center was (and still is) closed. At the day center, I occasionally tried to read, but the noise was just too much. As a result, I had much more time to read. I don’t think I finished any of the books on my lockdown TBR list, but that’s probably because I’m a mood reader.

4. Saving money. Okay, that’s not something I did, but it did happen. I didn’t go out to dinner or have to buy transportation tickets to go to my husband. I didn’t get my hair done, which was really okay as I hate getting it done. In the end, I ended up saving some money. Then I bought my iPhone, of course.

5. Snacking. In the early weeks of lockdown, I was using the added stressor as an excuse to snack on candy and cookies and basically anything. Magically, I more or less maintained my weight throughout the lockdown. I’m due to get weighed in tomorrow again.

What were the positives of the lockdown for you?