#WeekendCoffeeShare (May 15, 2021)

Hi everyone on this partly cloudy but thankfully not too rainy Saturday! Today I’m once again joining in with #WeekendCoffeeShare. I just had my afternoon coffee for today, but there’s probably still some left. Or you can grab a cup of tea or a soft drink. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been rather eventful. It started out with my psychiatrist’s appointment on Monday. Like I said, I was overcome with disbelief at how seriously the psychiatrist and my nurse practitioner took me.

Over the entire week, I’ve had a lot of emotional and visual flashbacks related to my trauma. I’ve also experienced some form of near-psychotic-like symptoms where I confused the past with the present. My inner life feels like a rollercoaster ride of dissociation, anxiety, paranoia and more. I really hope that I can start the topiramate soon and that it will help. I did try to take my PRN quetiapine a few times, but it hardly really helped.

If we were having coffee, I would tell you that my mother-in-law visited me on Tuesday. We went for an hour’s long walk and got fried fish at the marketplace near my neighborhood supermarket on the way back. Unfortunately, it started to rain just when we’d finished our fish, before we were back to the care facility. Thankfully, the rain wasn’t too heavy.

If we were having coffee, I would tell you that, despite not meeting my step goal of 10K for several days so far, I’m still on track for this week. The reason is the fact that, early in the week, I surpassed my goal. I even got in 17K steps on Wednesday.

If we were having coffee, I would tell you that my sister had her birthday on Thursday. I sent her a present (a book) already last week, but she wouldn’t open it till her actual birthday. My mother posted a picture on my sister’s FB of the card she’d sent announcing my sister’s birth. It showed me as a toddler and my sister as a newborn. My sister commented with a recent picture of my niece in which she looks just like me in the card, saying that toddler (leaving it to interpretation whether she meant me or my niece) is more beautiful.

If we were having coffee, I’d tell you that I’m seriously considering buying Apple Airpods Pro. I really want in-ear earplugs so that I can listen to soundscapes or soothing music when going to sleep. I also badly want them to have noise-canceling functionality.

Unfortunately though, I haven’t had the announcement from the benefits authority of my getting my annual vacation allowance, which should be in my bank account later this month. I had originally planned to buy the Airpods (and maybe an Apple Watch too) for that money. However, with the Braille display expense scare last week, I’m a little more careful now.

If we were having coffee, I’d share about the online magazine on cerebral palsy I found out about earlier this week. CP Netherlands created it and it’s lovely. I read in it, among other things, about a radio news reader who has CP.

If we were having coffee, lastly I’d tell you that my AFO broke sometime today. I have no idea how it happened, but my staff saw it when I wanted to put it on this afternoon. Ugh, I hate it when my adaptive equipment breaks down.

How have you been?

Finding God in the Middle

Today’s prompt for Five Minute Friday (#FMF) is “Middle”. I sat thinking about what I want to write for a bit. The prompt really resonates with me, but I wasn’t too sure why. Then I realized that, in all of my life, I struggle to find the middle.

In dialectical behavior therapy (DBT), I learned to practise finding the middle. The middle between emotional mind and rational mind, for example, is called Wise Mind. But there are other things that require the skill of dialectics.

For example, I struggle to reconcile my relatively high (sometimes even seen as very high) IQ with my low emotional level of functioning. I know rationally that, when staff leave the room, they aren’t on the North Pole, but emotionally it feels that way.

Then again, there is somehow a middle. I still am both highly intelligent and emotionally vulnerable, after all. If they were mutually exclusive, I wouldn’t be me. And I am me. And that’s okay.

DBT is partly based on Buddhist thinking. However, I do believe that God does call us Christians to find the middle ground too. Like Kate writes in her own contribution, God is there always: He was there in the past, He will be there in the future, but He is definitely also there in the middle, that is, the present.

This is also what DBT calls us to do: be present in the here and now. Mindfulness is one of the core skills of DBT and it doesn’t matter that the idea of it originated with Buddhist thinkers. In fact, when we as Christians pray and especially when we are still, we are present. God calls us to be present, to receive his grace in the Holy Spirit. DBT fans can call that Wise Mind all they want. I call it God’s speaking to me.

First Impressions

I’m rather late to write today. I wasn’t sure what to write about, if anything, for all of today. Then I came across
Fandango’s provocative question for this week. This definitely inspires me. Fandango asks what impression you think you make when people first meet you?

Well, let me start by saying it depends. The factor that makes the difference is largely whether I’m using my white cane. When I am, that’s obviously the first thing people notice. Then most people will immediately know that I’m blind and their further impressions of me will be as much based on me as on their views and prejudices about the blind.

When I’m not using my white cane, people will usually still immediately notice that I am disabled, but be unable to tell what my disability is. This surprised me for a long time, as I always thought the fact that I’m blind is obvious from the way my eyes look. Apparently not, at least not since my cataract surgery in 2013.

In fact, I didn’t know that it’s not obvious somehow until I attended my second online cerebral palsy meeting. In the first, I had mentioned my additional disabilities immediately, but I had no reason to the second time around. Midway through the meeting, I got to mention it and the people who hadn’t attended the previous time all said they hadn’t known.

Generally speaking, I allow strangers and near-strangers to make their own judgments about me and my disabilities based on the first impression, be it that I’m blind or that there’s something “wrong” but they cannot be sure what. Sometimes I correct them, but less and less so. I mean, I could correct taxi drivers that it’s not obvious that all blind people live in care facilities, but why should I? I don’t think I have an obligation to justify why I need 24-hour care and people who are just blind don’t. I honestly don’t feel it’s my responsibility to set an example of competence that I cannot live up to just so that others won’t stereotype other blind people.

I once was approached by a police officer, because I had been wandering the neighborhood without my white cane. That policeman assumed I was either high on drugs or intellectually disabled, as he asked me whether I’d used or had eloped from the local institution. At the time (when I was around eighteen), I had virtually no understanding of the impressions I made on people and I initially corrected him. My father thought the police officer was stupid for assuming I had used drugs or belonged in the intellectual disability facility. I think my father’s preconceived judgments about me and anyone interacting with me, were farther off than that police officer’s.

An Unbelievably Good Psychiatrist’s Appt Yesterday

Yesterday, I didn’t blog, because I was overwhelmed and frustrated all evening. The frustration is a topic for another time. My overwhelm was mostly positive in a way, in that I’d had a psychiatrist’s appointment in the morning and was overcome with disbelief at how understanding she was. That in turn triggered feelings of disbelief at my current life situation in general, which triggered memories of trauma.

I’d seen this psychiatrist once before, last December. Then, she had switched my PRN medication from lorazepam to quetiapine. Now was the time to discuss whether this was the right medication for me. I wasn’t sure to begin with. I explained truthfully that, while the medication helps somewhat with my oversensitivity to stimuli like noise, it doesn’t help with the anxiety and PTSD symptoms. I didn’t mention PTSD as such, but I did mention that my basic level of arousal is already pretty high. She asked me to describe how I moved from my baseline, which I explained was already a five on a 1-10 scale, to a level ten. I explained that I move very quickly and, once I’m at a ten, I’m too overwhelmed and unable to process stuff to take a quetiapine. Then, when I recover slightly to, say, a level eight, I can take the medication and it helps me get back to my baseline level of five.

I can’t remember how we got talking about it, but I assume my nurse practitioner already told her some things about my anxiety. I mean, we got talking about my fear of going to sleep, which I up to that point had hardly realized was maybe an actual fear of going to sleep because of nightmares. Until this point, I’d always assumed it was some form of fear of abandonment, as the night staff isn’t in my home all the time.

The psychiatrist pretty quickly got to her suggestion, which is adding a low dose of topiramate (Topamax) to my daily medications. I had heard of this medication before and a person I know online, had gotten it at his own request to help with PTSD-related nightmares. This person got it only for a few nights when he had to endure a triggering situation though. Besides, I don’t have nightmares every night. So before I agreed to it, I asked the psychiatrist to explain what it would do. She said it’s normally prescribed for epilepsy or migraine, but low doses are also found to be effective for trauma-related symptoms. She explained that some people love this medication and some hate it due to its side effects. At first, I’ll get one 25mg tablet to be taken at night. I’ll notice any side effects I’m going to get within the first several days and can then stop right away if they’re too unpleasant. If I tolerate this medication, the dose can be upped, in which case I’ll need to take the medication twice daily. The highest dose she usually goes to for PTSD is 150mg a day. She said that it should help with nightmares, but also could be helpful in preventing me getting triggered and having flashbacks often during the day.

I loved how understanding she was of my symptoms. I can’t even remember having said that I experience flashbacks, but I quite often do indeed. She said that, though I can continue to take my PRN quetiapine, that one dulls me a bit, while the topiramate should actually make me less susceptible to flashbacks. It reminds me of an explanation of the different effects of antipsychotics vs. anticonvulsants in helping with sensory overreactivity that I once read. It said something like, imagine overload is hearing a hated radio channel at top volume in your head. Both antipsychotics and anticonvulsants change the channel, but while antipsychotics give you headphones, anticonvulsants actually lower the volume of the radio. Of course, I will continue to take my daily antipsychotic (aripiprazole) and antidepressant (citalopram).

A possibly not-so-undesirable side effect of topiramate is decreased appetite. Other than that, side effects include drowsiness, sleepiness, double vision and tingling in the hands or feet. That last one, particularly if it’s going to effect my fingers, sounds annoying, but I’ll get to experience that if it happens.

Since my nurse practitioner will have to talk to my care facility’s physician before the medication can actually be started, I don’t expect this to happen till sometime next week. It’s also been decided I will start this when a trusted staff is on shift.

Now this did get me into an excited yet overloaded state yesterday evening. I mean, seriously, how can it be that someone truly understands? It baffles me but I’m so relieved.

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?

Braille Display #WotW

Hi all! What a week it’s been! From frustration to complete panic and back to relief, all because of my Braille display. That’s my word of the week for this week. Let me share why.

Like I’ve shared a couple of times before, I’ve had problems with my current Braille display ever since I first got it two years ago. Dots kept getting stuck, leading to errors in my reading. After all, Braille characters are comprised of at most eight (for computer Braille) dots in a rectangular cell. When, say, dot four is stuck, an A reads like a C or vice versa. It’s workable as long as it’s just one or two dots that are stuck out of the forty times eight dots on my forty-cell Braille display. However, at one point several dots in one cell were stuck, meaning that one was essentially useless.

After a technician had come out to repair my Braille display several times, he sent it back to the manufacturer for checking out in June of last year. I got a replacement on loan until it’d been fixed, which never happened.

Fast forward to last Sunday. When not one, but two or three dots were stuck on my Braille display, I decided I’d had enough and wanted it fixed. Either that or I wanted the original one back. I E-mailed the company, also asking what I could do to prevent dots getting stuck again. On Monday, I got a relatively generic response: other than not touching my Braille display with wet or dirty hands, there was nothing I could do. Well, I always make sure my hands are clean and dry before touching my Braille display. On Tuesday, the company’s repair planning called me to schedule an appt to get the thing repaired today.

Then on Wednesday, the company’s business developer called me to inform me that they’d found that my original Braille display – remember, the one that was with them or the manufacturer for a year -, had suffered water damage. All 40 cells needed replacing at a cost of €1500. Health insurance wouldn’t pay for this. Maybe home insurance would or I’d have to pay out-of-pocket.

I decided that, if I had to spend €1500 anyway, I’d be looking at getting another brand of Braille display, since I don’t trust my current one. I mean, I always handle my Braille display with care and not just the original one, but the replacement one too had problems. I actually got a little excited looking at what’s available, but at the same time quite panicked at the prospect of having to spend at least €1500 in one go. I’ve literally never made purchases over €1000.

Yesterday evening, I got an E-mail confirming the appt for repair of the replacement Braille display. I panicked again, since what if they decided I’d somehow ruined this one too or I got a huge bill after it got repaired?

Today, my husband called the business developer. He had seen the photos of the so-called water-damaged original Braille display, which the guy argued proved that I had somehow ruined it. Well, my husband argued that, since they’d had it for at least as long as I had originally had it, there was no way to prove it didn’t get water-damaged or anything while with them. Since I have no recollection of it getting wet at all, there is no way home insurance is going to cover a repair. In fact, they’d too argue that there’s no way the company can prove it isn’t their fault. The bottom line is I can keep the replacement Braille display, it would get repaired and I won’t have to pay. The technician who came out to replace the cells that had damaged dots, confirmed that it hadn’t been anything I had done causing this one to malfunction. Now, at least until/unless more dots get stuck on this one, I’m so relieved and happy! To be honest though, I’m so used to dots being stuck that I keep checking I’m reading my Braille display correctly. That’s okay though. Now let’s think of what I can spend those €1500 on. No, not really.

Word of the Week linky

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.

#IWSG: Breaking a Record!

IWSG

Hi all! It’s the first Wednesday of the month and this means it’s time for the Insecure Writer’s Support Group to meet. At the moment, my thoughts aren’t with writing really. However, I wanted to share my contribution to the #IWSG anyway.

Last month, I was a real writing ninja. I, of course, participated in the #AtoZChallenge. That did get a bit boring as the challenge proceeded, but I managed to finish it after all. I’m so glad I did, because it gave me real new motivation for keeping up the blogging habit.

Not only did I write the 26 posts for the challenge, but I actually wrote more posts in the month of April than I had in any month before since being a blogger. I published 41 posts this month. Seriously, in all the more than eighteen years I’ve been blogging, I didn’t publish this many posts in one single month!

Blogging aside, I also wrote quite a few other pieces. I have been journaling almost daily for a few weeks now. Sometimes, I just wrote a couple of sentences, but sometimes I wrote more. I have particularly loved expressing my gratitude in my journal. I’ve also loved writing responses to Day One’s daily prompts. Some of them weren’t too inspiring, but some definitely were.

For the upcoming month, I hope to be able to write daily again, be it on my blog or elsewhere. I’d love to make use of the many journaling prompt collections I have. I transferred some from my computer to my iPhone, so that they will be more readily available to me.

Now on to this month’s optional question: has any of your readers ever responded to your writing in a way that you didn’t expect? Well, not really. I mean, I get the occasional critical comment. For example, when I still blogged on my old blog, there was a person who commented on each of my posts mentioning my alters. Their comments invariably stereotyped people with dissociative identity disorder and told me that I was faking having alters and needed treatment for a personality disorder. Well, yes, those comments weren’t what I’d hoped for. Then again if I put myself out there like this, no doubt someone’s going to use it as a way to try to offend me. That’s how the Internet works.

Other than that, the most surprising comments I’ve got were compliments on my creative writing. I know that most people want to build each other up even if they don’t fully mean it, but still, it’s quite cool to get a compliment on a poem or piece of flash fiction. Similarly, having had my piece accepted into an anthology back in 2015, wasn’t what I’d expected at all. That one was creative nonfiction, but I honestly had written it in the span of like an hour or so and had been rather impulsive submitting it. I was so elated to have the piece accepted for publication.

How about you? Do people ever respond to your writing in a way that you haven’t expected?

Basic Mistrust

I have been compelled to read up on emotional and psychosocial development. One theory is Erik Erikson’s theory, which states that, at each different stage in life (from infancy to old age), a particular conflict is present. In infancy and early toddlerhood, this conflict is basic trust vs. mistrust.

I initially thought that this stage corresponds pretty much to the first adaptation phase in attachment theory, which takes place between birth and age six months. When I checked it though, it includes this stage as well as the first socialization phase, age six to eighteen months. This may be one reason why I relate strongly to basic mistrust even though, in attachment theory terms, I function in most areas consistent with the first socialization phase.

One thing I’m facing lately is a chronic feeling of anxiety and distrust. In my care plan, my emotional development is outlined and in the fear domain, I am said to function at an age comparable to somewhere between zero and eighteen months. This includes all of Erikson’s first stage of psychosocial development. By contrast, it encompasses both the first adaptation and first socialization phase of attachment development. The reason my development in this area isn’t pinpointed to either of these two phases, is that I experience both basic fear (consistent with the first adaptation phase) and strong separation anxiety (consistent with the first socialization phase). Apparently, a baby under six months cannot yet express separation anxiety.

I have little idea why I might experience such strong anxiety, as in, what in my early development contributed to it. I mean, my parents claim I didn’t have these issues until I started to lose my eyesight at age seven. Seven is another important age in both cognitive and psychosocial development, but I don’t think that one is particularly important in my life. The earlier stages seem to make far more sense to me.

Of course, I do know that I probably didn’t have optimal care in my early life. This isn’t anyone’s fault. I was, after all, born prematurely and spent the first three months of my life in hospital. Though my parents visited me often, I don’t think I could rely upon them for meeting my every basic need. After all, they cannot possibly have been in my proximity 24/7, like the mother of a typically-developing child usually is at least for the first few weeks to months. My nurses must’ve provided me feeding and comfort at least part of the time.

As for affection, I have absolutely no idea. NICU nurses aren’t likely to be able to provide any significant level of affection to a baby at all, but I guess my parents would’ve made up for that. I went into this when discussing mother as source and mother as place of attachment. The truth is, I honestly mostly rely on my current feelings to guide my ideas. I, after all, don’t have many early memories of affection. My first memory related to it is from age four or five and it involves my mother using a nickname for me that referred to her needing to be at my side all the time. Then again, most people don’t have many early memories at all and remembering is still a form of reconstruction. In other words, because I experience a lot of basic mistrust now as an adult, it is easier for me to remember the memories that point to this.

This post was inspired by Fandango’s one-word challenge (#FOWC), the word for today being “Basic”.