#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”.

Book Review: A Sister’s Shame by Maggie Hartley

Hi everyone! I am pretty behind on my reading for the year, but am hoping to catch up over the coming months. I so far finished five books out of my goal of reading twenty in 2021. The most recent book I finished is A Sister’s Shame by Maggie Hartley. This book came out on April 15 and I immediately ordered it on Apple Books. I already finished it last Friday, but couldn’t find the time to review it until now.

Summary

Foster carer Maggie Hartley is used to all manner of children arriving on her doorstep, but nothing can prepare her for sisters Billy and Bo when they
arrive at her home. It is clear from the moment she sets eyes on them four-year-old Bo and seven-year-old Billy have clearly been subjected to unimaginable
neglect, and it takes all of Maggie’s skills as a foster carer to try to connect with the volatile little girls, who seem far younger than their years.

Over time, the little girls slowly emerge from their shells, and Maggie begins the difficult task of trying to gain their trust. But as time goes on, it
becomes clear that there is something much darker going on, something that will call into question everything Maggie has ever learned in all her years
as a foster carer…

My Review

Even despite the fact that the main issues in this book aren’t mentioned in the synopsis, I found this book to be on the predictable side. I could pretty quickly imagine what Billie and Bo had been and were still going through. As such, if you’re used to books with lots of twists and turns, this book isn’t for you. However, if you want to learn what fostering in the UK is really like, or if you’re interested in inspirational memoirs, this is a great book. I for one don’t really care for unexpected plot twists, so I didn’t mind the fact that this story is quite predictable. In fact, I loved to read about all the details that my imagination couldn’t fill in already.

I had only read one Maggie Hartley memoir before and that one was soon one of my favorite inspirational memoirs. That one, Who Will Love Me Now?, which I reviewed last August, deals with an older child. I usually like to read about older children more than about younger children, so that one was slightly more for me than this. However, I could definitely sympathize with Billie and Bo too, thanks to Hartley’s compassionate writing style. For this reason, I gave this book five stars on Goodreads too.

Book Details

Title: A Sister’s Shame
Author: Maggie Hartley
Publisher: Seven Dials
Publication Date: April 15, 2021

#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?

It May Be May #SoCS

SoCS Badge 2019-2020

It may be May already, but the weather’s still not that good. Though it is a little sunny with some clouds here, the temperature’s still low at a high of 12°C today. It’s supposed to rain all of next week and the temperature isn’t supposed to get above 16°C and that won’t be till next weekend.

The month of April was very chilly too, though it wasn’t too rainy. Oh, how I want higher temperatures!

In May, I usually anticipate summer eagerly. My sister has her birthday on the 13th. This is also when I start counting down to my own birthday at the end of June.

This year though, it doesn’t feel like it’s May already. It feels more like the beginning of March. I’m not sure whether that’s due to the weather or something else. Maybe it’s also because our lockdown still hasn’t eased much and we’ve been in it for so long. I mean, last year we were still in lockdown by early May too, but that one wasn’t implemented until the middle of March. Ugh, I can’t wait for some restrictions to be lifted. Oh well, some were, but I think the infection numbers are still too high for me to take advantage of that. Of course, I’ve been vaccinated and my parents too at least got their first shot. However, my husband and mother-in-law still haven’t gotten theirs. My husband isn’t sure he’ll ever be vaccinated at all.

Ugh, I’m tired of COVID-19 restrictions. I’m pretty sure they won’t work anyway. I mean, the infection numbers and hospitalizations are quite high and we keep getting glimmers of hope that they’re going down soon. I doubt it. I was also scared to find out that there’s an outbreak of COVID in a nursing home even after vaccination. Ugh, I was hoping I’d be protected. This freakin’ pandemic has been going on for so long!

Remember that, in March last year (I was going to write “last March” as if it isn’t past March 2021 yet), I wrote that I expected life to be pretty much back to normal by September of 2021. I honestly don’t believe that and I think neither does anyone else, though some people are still disbelieving when I tell them this pandemic might go on till 2024. That’s what I’ve read somewhere. I really hope that source is wrong.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “may”.

Zoloft From Nature: Uplifting Essential Oils #AtoZChallenge

Hi and welcome to the final day in the #AtoZChallenge. Sorry for another weird title. I usually go with Z for “ZZZ” and then write about sleep, but I already covered calming essential oils in my letter X post. Zoloft (sertraline) is an antidepressant, so I thought I’d steal that name for a post on uplifting essential oils. Unlike calming essential oils, I am not under the impression that uplifting oils can replace a legitimate antidepressant prescription. After all, generally speaking, antidepressants should only be prescribed in moderate to severe cases of anxiety or depression. It may therefore be needless to say, but don’t stop your antidepressants without a doctor’s supervision. These oils may help you feel better and are generally safe to use when you’re on medication.

First up is clary sage essential oil. I love love love this oil. It is not generally energizing, but is very uplifting to the mood. Clary sage essential oil is derived from the flowers/buds and leaves of the salvia sclarea plant. It contains 60 to 70 percent linalyl acetate, which gives it its mood-boosting properties.

citrus essential oils like grapefruit, bergamot and lemon are also great for stimulating the mind and improving mood. Like I said when writing about those oils, they can be combined together to create fresh, fruity blends. I mentioned my keylime pie diffuser recipe already, but the possibilities are really endless.

Another oil I came across when doing research for this post, is white fir. This is an oil I haven’t used often yet, but it combines great with citrus oils to add a little woodsy scent to your blends. I also saw spicy essential oils like cinnamon listed.

Lastly, mint essential oils, especially spearmint, are particularly helpful to get you out of a funk. They are energizing and, in combination with citrus oils, are great for boosting your mood.

Ylang Ylang Essential Oil #AtoZChallenge

Hi and welcome to my letter Y post in the #AtoZChallenge. Yay, we’re almost done with the challenge. Today, I will share about one of my favorite essential oils with you: ylang ylang. I never quite understand how to pronounce it, but who cares if it smells good?

Ylang ylang essential oil is derived through steam distillation of the flowers of the Cananga odorata tree. Its common name comes from the repetition of the Tagalog word for “wilderness”, “ilang”. The tree occurs in the tropical rainforests of the Philippines, Indonesia, Comoro and Polynesia.

Ylang ylang is an interesting oil, in that it is distilled somewhat differently from other oils. You may have seen ylang ylang essential oil be referred to as “Extra”, “Complete” or a Roman number I, II or III. The difference lies in the distillation time. Ylang ylang extra is only distilled for a short time. Then the remaining oil is further distilled to create ylang ylang I, II and III. Finally, a completed distillation results in ylang ylang complete. For aromatherapy purposes, ylang ylang extra or complete are preferred. I honestly have no i dea what variety of ylang ylang oil I own.

The aroma of ylang ylang essential oil is exotic, sweet, floral and a bit fruity. The essential oil is thought to help lessen anxiety and depression. It is also said to be an aphrodisiac. Ylang ylang essential oil is thought to help reduce negative emotions such as nervousness, tension and sadness. It also supposedly promotes positive feelings of cheerfulness and optimism. For this reason, it is very useful in promoting sensuality for couples.

When used topically on the skin, ylang ylang essential oil is believed to help regulate the skin’s oil production, thereby reducing excessive dryness or oiliness.

The maximum usage rate in skincare products is 0.8%, because there is a risk of skin sensitization. Also be careful when using ylang ylang essential oil in a diffuser for the first time, as it can cause a headache.