How I Coped With Losing My “Job”

Posted on by Astrid

Hi everyone. This week, one of the prompts for Writer’s Workshop is to write an essay titled “How I coped with losing my job”. I don’t do well writing fictional essays and have never had a “real” job, in the sense of a paid position or even volunteer work. I did, however, once “lose my job”, in that I got told the day center I went to couldn’t keep me there anymore.

This happened sometime in January of 2018 at my first day center with my current care agency. They had had me there for eight months, in two different groups, but when I was struggling to cope at the second group, they could no longer serve me or so they said.

I felt really distressed about this. The most frustrating aspect was the fact that they blamed me for no longer being suited to the center, while in reality, three new clients had been accepted into my group and no additional staff had been hired. I remember the reason they said it was me being the problem, not the new clients, was the fact that I’d been having meltdowns shortly before they arrived. Now I know that any anticipated change will cause me distress and that doesn’t mean I’m just a problem client. However, in hindsight, I’m pretty sure they wanted me gone sooner rather than later all along, for the simple reason that I don’t have an intellectual disability.

Thankfully, I wasn’t told to leave on the spot, but got time to find a new place. I initially had no clue how to, but did remember that, in 2010, I had been helped by the Center for Consultation and Expertise (CCE). I told the staff that I wanted to involve them again.

This was a bit of a hassle, as my community psychiatric nurse from the mental health agency said I’m far too high-functioning for the CCE. I applied nonetheless and got an orientation meeting in May of 2018.

In the end, I didn’t need the CCE for finding a new day center, but the consultation was what led me to accept that living independently with my partner wasn’t working and I needed long-term care.

I did feel intensely frustrated, like I said, at being “fired” from this day center. However, in the end, I don’t blame the staff, who were just powerless in the face of my challenging behavior. I think the manager, who didn’t look beyond my psychiatric diagnoses, is partly responsible. So was the psychologist from the psychiatric hospital, who more or less made the manager accept me on partly false premises.

Exploring “Safe Ground” in a Less Than Optimal Care System

Posted on by Astrid

I’ve been exploring the concept of “safe ground”. This is a buzzword in the long-term care sector, particularly in the care of people with severe challenging behavior. It is used to describe the idea that people are unconditionally accepted in their care homes and will not be kicked out for their behavior.

I’ve been feeling drawn to this idea, because I’ve been kicked out of services, or out of the particular service I used, for my behavior several times.

One video I watched on the topic of “safe ground” explored a care home for the most severely challenging individuals. As in, there are only 24 places in the entire country. I don’t know why I was drawn to this video, because I’m not nearly the most challenging resident on grounds here, let alone among the top 24 of the country. In fact, I would say that at least one of my fellow residents here at my home is more challenging than me.

There are two concepts to unpack here, which may or may not be related. The first is, why do I identify so strongly with the most difficult of clients in the care system when I’m probably somewhere in the middle? The second is, is “safe ground” only the idea that people won’t be kicked out for their behavior, or is it more generally speaking unconditional acceptance of clients with their unique needs?

I’ll explore the second concept now. I think “safe ground” means more than just not kicking out clients, and in this respect, it’s relevant to me. I think it means (or should mean) seeing the unmet needs behind challenging behavior. Seeing the person rather than the client. I still think that, even if I don’t end up being kicked out of here for my behavior, there’s still a world to win here. I am hopeful that, when the things we discussed a few weeks ago at the meeting between my support coordinator, behavior specialist and me, will be implemented, we’ll get close.

That being said, it’s still 2024 and this means no optimal care for anyone. I think one of the things I wish people would admit is that they’re having to deal with a strained system rather than blaming the client for their challenging behavior.

I ran into this yesterday, because there’s yet another change in staff hours, and yet the other support coordinator claimed everyone gets the attention they need. No, that’s not true, or it depends on how you define “need”. After all, most of us do mostly get our needs for physical care met, by which I mean we get dressed, showered and have something to eat. Most of us however are still routinely left to fend for ourselves when we’re struggling emotionally. I and the more challenging fellow client are the lucky exceptions to this rule. Even so, I would not call my care optimal. That isn’t going to happen and that’s sort of okay, but it makes a massive difference whether staff blame me or they blame the system. In other words, are we talking about things we as clients shouldn’t expect or things they cannot offer? The end result is the same, in that we have unmet care needs, but the latter is a lot more empathetic towards us.

Memoirs and Biographies

Posted on by Astrid

This week, there are many interesting prompts for the Writer’s Workshop. I am still thinking I might write on a different prompt tomorrow, but usually I don’t get to it. Today, I’m choosing the prompt about memoirs, biographies or reference books. They are, after all, my favorite genre to read.

I was not an avid reader as a child. Still am not a voracious reader, but I did discover the love of reading through memoirs and autobiographies. When I was in my late teens, I briefly was a member of the UK’s national library for the blind. They sent me Braille books. Yes, the clunky hardcover volumes (often eight or more per book).

I usually chose memoirs. Among my favorites were Planet of the Blind by Stephen Kuusisto and Emma and I by Sheila Hocken.

The first is an autobiography by a person blind from the same eye condition I have. If I’m correct, Kuusisto had some vision as a child but lost it later on, like I did too.

The second, which is the first in several books, talks mostly about the author’s experience of getting a guide dog.

I eventually got kicked off the library service for losing two volumes of a book, I’m not sure which one, in the mail back to them. However, this experience is probably what got me to love memoirs and autobiographies.

I currently often read foster care memoirs. My favorite authors are Casey Watson and Maggie Hartley. Cathy Glass is good too, but she stopped writing.

I recently discovered a new-to-me foster care memoirist, Louise Allen. That’s not entirely correct: I had heard of her a while ago, but because her books have horribly nondescript titles like Jacob’s Story, I didn’t fancy reading them. Now I am currently reading Jacob’s Story and think it’s fascinating. I must say though that the book is really a crossover between fiction and memoir, since the author writes from perspectives other than her own too. That makes it all the more intriguing, but I’m not entirely sure the books would count as memoirs.

My Medication Musings: Topamax

Posted on by Astrid

Hi everyone. I had a med review today, which prompted me to write a post in my series discussing the various medications I’ve been prescribed. Today’s med review mostly concerned topiramate (Topamax), so I’ll write about that.

Topamax is an anticonvulsant usually prescribed for epilepsy. It has also shown effectiveness in treating migraines. How exactly it works is not known, but it does in these cases, although it’s not the first choice of treatment for either epilepsy or migraines.

I have neither epilepsy nor migraines. Besides, the highest dose of Topamax I ever took, 75mg/day, is far lower than the effective dose for these conditions. The reason I took Topamax is because it is also believed to help with PTSD-related nightmares and flashbacks. The way my psychiatrist explained it to me back in 2021, it might even lower my general distress level slightly. Well, it didn’t.

Topiramate can have significant side effects, including cognitive impairment, tingling in the hands and feet, and others. On 75mg, I experienced slight tingling, but I honestly don’t know whether I ever had any other side effects. I do have quite horrible tremors in my hands and legs, but these could be from any of my medications or from something unrelated altogether, although my doctor didn’t say what.

I, after some tweaking, eventually settled on a dose of 25mg twice daily. I never really questioned its effectiveness until I was wanting to taper another medication, Abilify, about two months ago and my prescribing physician and I reviewed all of my current psych meds. I said that none of my meds except for my antidepressant, Celexa, seemed particularly effective. The doctor then decided I could discontinue my morning dose of Topamax.

Today, I had a review. Though I have been a bit more distressed lately than usual, this could have many causes, including fellow clients being in distress more than usual too. Furthermore, I don’t experience an increase in nightmares or flashbacks. I admitted that most of my flashbacks are emotional, in the sense that I get dysregulated when triggered rather than having a visual reliving. I’m not sure whether these have increased.

When the doctor asked me what I wanted, I was clear: to discontinue my other 25mg of Topamax as soon as possible. This will happen in mid-August.

I am, honestly speaking, also guided by general principles in addition to personal experience: I learned about a year ago that a then recent systematic review had disproven the effectiveness of topiramate for PTSD-related symptoms.

My Current Night-Time Routine

Posted on by Astrid

Hi everyone. I totally forgot about Writer’s Workshop this week, even though there are several prompts that appeal to me. I might just write another post tomorrow about another prompt, but tonight, I’m talking about my bedtime routine. Oh wait, I wrote a post about that already in 2022. Reading it makes me miss Raalte so much… even my night-time routine was better. Oh well, here’s my current night-time routine.

My night-time routine starts at 8PM with my getting into my nightwear. Even though this is early, I’m the last of my care home to get dressed into my nightwear. I also get my last round of meds at 8PM, which thankfully doesn’t include sleeping pills. The one time I took a sleeping pill while here, I had to take it at 9PM, which is still very early for me.

At 8:45PM, I usually get a small snack or a bit of fruit, because like I said I go to bed late and I’d feel hungry if my last food of the day (except for a biscuit at evening coffee time) was dinner at 5PM. Then at 9:30PM I brush my teeth, my staff lock my door that leads to the backyard and turn off my lights. Since I’m blind, I can function without light and, if the staff don’t turn off the light for me, I might forget or be bothered by the light if it’s set really bright, and I don’t know how the switch works.

Once I’m ready for bed, I turn off my computer and check the battery status of my iPhone. I sometimes forget to charge my Apple Watch before bedtime and then I put it on the charger for a few minutes to at least get a bit of power to last it through the night. Depending on the battery status of my iPhone and my mood, I might turn on relaxing music either for an hour or throughout the night.

I take off my slippers and usually my socks (except in the freezing depth of winter, then I leave my socks on). I have a weighted blanket that I lie under year-round. And no, it isn’t exceptionally hot in summer. I also fetch two specific stuffed animals: the lemur will have its tail across my stomach and the dolphin I will hold in my arms. I have about five more soft toys in my bed, but these usually just lie around my pillow.

I can sleep in all kinds of positions depending on my mood, the temperature in my room, etc. I usually have the headboard of my bed turned up pretty high. When I can’t sleep, I also turn the other end up. Yes, I know, it sounds weird. I am so grateful for my adjustable bed though. It isn’t a given, since just after I’d gotten this one in like 2021, the higher-ups in my care agency decided that people who weren’t severely physically disabled, didn’t qualify for adjustable beds. They didn’t take away mine though, thank goodness.

Reminders When I’m Feeling Like Life Is Pointless

Posted on by Astrid

Hi everyone. Like I said on Saturday, I’ve been struggling lately. It’s been so bad that I’ve actually been considering talking to my doctor about options for medication. I mean, I’ve been tapering my antipsychotic aripiprazole (Abilify), which is sometimes used as adjuvant medication to treat depression. However, I honestly struggled with mild depression already before starting my taper.

That being said, I really need to remind myself of the things I have in life. For this reason, I started a list of positives and negatives for each day that I’ll send to my second assigned staff weekly. She is more socially adept and empathetic than my other assigned staff, which is why I have her to discuss my personal issues with. Anyway, I allow myself to list the negatives too, which sometimes outweigh the positives, but the last few days, the positives have outnumbered the negatives.

For instance, today I had as a positive the fact that I finished a pair of polymer clay earrings. Okay, I haven’t yet seen how they turned out, but who cares? The process is more important than the outcome. I also listed as a positive the fact that I had a good online meeting with the regional branch of CP Netherlands, the Dutch cerebral palsy alliance.

I listed one negative, ie. the fact that I got slightly stressed out when my male assigned staff asked me some questions about swimming. I’m supposed to go swimming in a group on Thursdays but this hasn’t happened yet due to staffing issues. I have tried to jump through all kinds of hoops to accommodate the staff and felt like I was being pushed around. Thankfully, tomorrow (Wednesday), it turns out, I’m allowed to try out swimming with my fellow clients.

I think that, when I’m in a downward spiral and particularly when I feel like my world is becoming smaller and smaller and life is pointless, I need to remind myself that there are still lots of things I can do even though I’m at home a lot. I could read, watch YouTube videos, blog, scroll on social media, do all kinds of crafts. Honestly, in fact, when a staff is entertaining, even a dice game can be enjoyable. And the entertaining factor is a two-way street. After all, I noticed this with a staff yesterday with whom I hadn’t gotten along a few weeks back. He was about as unengaging as could be and left 15 minutes early, but then again I treated him badly first by refusing to explain my routine because “it’s not my job to train temp workers”. It isn’t, technically speaking, but I could’ve been kinder. Yesterday, he actually made our game of Yahtzee fun.

I do still think my world could be enriched. I also feel this isn’t a cure-all for my depressed mood. Some of it comes down to grief, too. Grief for having lost the support I had in late 2021, when I was 95% sure I wanted to stay in Raalte. “Make that 98% please,” the manager said. Not even half a year later, it turned out, either she or some other people involved there were glad I was asking to leave. That angers and saddens me to this day, but wallowing in these feelings won’t help. Involving myself in positive activities might.

I’m joining #WWWhimsy.

Friendship: What It Means to Be a Friend #AtoZChallenge

Posted on by Astrid

Hi everyone. For my letter F post in the #AtoZChallenge, I had a lot of choices and yet this actually overwhelmed me. I am once again doing a post on a topic I think I covered in 2019 too, ie. friendship. What does it mean to be a friend?

My spouse and I are best friends. Since we aren’t in a traditional relationship due to for example not living together, we need to find other ways to make our relationship work. However, we were friends before we were a couple.

As someone who didn’t have any friends beyond elementary school until I met my now spouse, I am not the best possible judge of what makes a friendship tick. I mean, I can look at what psychologists say about the development of friendships from early childhood into adulthood.

For instance, three-year-olds say someone is their friend because they play with them on the see-saw and “doesn’t want to be their friend anymore” as soon as the other child isn’t any longer interested in the same activity. I have this kind of relationship with some of my fellow residents.

As a child gets older, they develop more perspective about the fact that other children aren’t just momentary playmates, but their viewpoint is still very one-sided. For example, a six-year-old might consider someone their friend because they save them a seat at the bus or give them treats. They don’t yet fully comprehend mutual give-and-take though.

This follows at the next stage, which starts at around age six and continues throughout elementary school age. At this point, children are very fairness-conscious and usually have rigid rules for give-and-take.

At my very best, I am stuck at this stage. Usually though, I am at the second stage, hard as I find it to admit this. I, after all, usually only think of giving something in return for the things (material or immaterial) my spouse gives me when I’m in a very healthy place mentally.

At the next stage, which starts at around age eleven, children develop intimate friendships in which they mutually support each other. They help each other solve problems and confide feelings in each other that they don’t share with anyone else. Like I said, I never had friends beyond elementary school before meeting my spouse. Though I did and do confide in my spouse, I am pretty bad at offering my spouse any emotional support in return.

Finally, adolescents and adults have mature friendships in which they emphasize emotional closeness over anything else. They can accept, sometimes even appreciate their friends being significantly different from them. People at this stage emphasize trust, knowing their friendship will be long-lasting even through temporary separations and differences.

Disability: Describing My Impairments #AtoZChallenge

Posted on by Astrid

Hi everyone. I know for sure I did a post describing my limitations on my now defunct blog, but don’t think I ever did one on here. Besides, even if I did, I learn something new about myself, including my disabilities, all the time. For my letter D post in the #AtoZChallenge, I thought I’d describe my disabling conditions in lay terms. Oh wait, the lay terminology is going to be really tough.

First, I am blind. I have what is called light perception, which means that I am able to see whether it is dark or light around me, but not what direction the source of light is coming from (that ability would be called light projection). Functionally speaking, even though I can still tell day and night-time apart and this is what sets the totally blind apart from those with any vision in medical terminology here in the Netherlands, I consider myself totally blind.

Next, I (most likely) have mild cerebral palsy (CP). I say “most likely” because my parents didn’t tell me whether I had any diagnosable condition that would explain my mobility impairment and I stopped seeing a physiatrist (physical disability doctor) when I was around nine. In any case, I walk with a drop foot on my left side that gets worse when I get tired. Though I can, with difficulty, walk a distance of about 5km at a time when I’m very energized that day, I do fall more easily than non-disabled people. I didn’t realize this until, several years ago, I read on a CP-related blog about fall risk assessments containing a question about whether you’ve fallen for any reason in the past year. Well, the blogger said hardly a week goes by that they don’t fall. That isn’t exactly true for me, since I hold onto someone’s arm or hand when walking, but I do fall at least once a month.

CP (or whatever it is) also means my fine motor skills aren’t great. I used to get physical therapy for this. I did exercises like touching my thumbs to each of the other fingers. I can now do that easily with my right hand and with some difficulty with my left. I cannot use a knife and f ork to eat with and, even with my specially adapted spoon, often make a bit of a mess. I can type and do so with both hands, but I much prefer to use my right hand and, even though I was taught the ten-finger touch typing, I don’t do it fully correctly. As long as it works, though…

Since CP is caused by brain damage, in my case a brain bleed sustained shortly after birth, it can also come with other difficulties, such as processing issues and lower energy levels. This can also be part of autism, which I was diagnosed with at age 20, of course.

Autism, of course, has its core symptoms of differences in social communication and repetitive behaviors and interests. Because I can hold down a reasonably normal-sounding one-on-one conversation about myself, as clinical assessments often are, I am diagnosed as “mild” or level 1. I am not “mild” by any means, truthfully.

I am tired. I was writing an entire rant on why I am nnot “mildly” autistic, but I was using all kinds of technical terms and I promised you a lay explanation. I don’t think this post makes much sense, but oh well.

Creativity: How I Have Evolved As a Creative Over the Years #AtoZChallenge

Posted on by Astrid

Hi everyone. It’s late once again as I get to my letter C post. I don’t tend to think up my topics in advance. Same with this one. It actually popped up in my mind several minutes ago and here I am writing about my creative journey. Okay, I did my entire #AtoZChallenge of 2022 on creativity so am pretty sure I covered this topic already, but let’s do a repeat in that case.

I am not very imaginative. Like I said on Monday, I most likely have aphantasia. This combined with blindness and my other disabilities doesn’t make me all that great of an artist. And yet, I love to create!

In childhood, I’d often draw dresses and other fashion items, pretending I was a fashion designer. I lost the vision needed to draw around age 12 and, even though my drawing teacher found me paper that would create raised lines when drawing on it, I also hardly drew anything beyond stick figures in boxes from then on. Don’t ask me about their meaning – yes, I know they meant something, but for the life of me I can’t remember what.

I didn’t craft or create art again until my mid-twenties. Then I started card making. Over the next five years followed at least a dozen other crafts. And now, I’m stuck on polymer clay, although to be honest I don’t use the medium nearly as often as I used to.

Creativity can, of course, also involve the written word. I wrote stories from a young age on. I started out writing fiction and the occasional poem. Now, I almost exclusively write blog posts.

I must admit, as I think back on my creative journey, that my level of imaginativeness has probably declined over the years and I didn’t always experience aphantasia. Not that I ever had a rich inner world. Well, that is, I have and always had a strong inner monologue (or inner cacaphony, in fact) and could probably describe an inner world in words, but I couldn’t visually imagine it at all.

I think this lack of imaginativeness is the reason I write personal blog posts mostly and craft mostly realistic figures or things from tutorials. I mean, of course a unicorn isn’t real, but I almost literally copied my style of unicorns from a tutorial. Realizing this makes me feel really sad.

Bulimia (Or Something Like It): My Relationship With Food and My Body (Revisited) #AtoZChallenge

Posted on by Astrid

Hi all and welcome to my letter B post in the #AtoZChallenge. Today, I’d like to share a more personal piece and describe my history of disordered eating and body image issues. After publishing this post, I saw I did a post on this topic in 2019 too.

I first started struggling with a negative body image when I was about thirteen. I remember writing stupidly specific worries in my diary about food and my weight, such as whether the nails I’d bitten off would cause me to gain weight. All the while, I didn’t realize that I was, in fact, pretty close to overweight if not overweight already from consuming enormous quantities of candy on weekends and daily sausage rolls at the school cafeteria.

I was lucky that I never became significantly overweight until around age 25. By that time, I had developed something at least bordering on bulimia: I ate a full 500g bag of candy, sometimes more, in one ten-minute sitting at least three times a week. I also purged, although I did that after regular meals as much as after bingeing.

In the six years that followed, I gained over 20kg in weight and, by the time I was kicked out of the psych hospital to live with my spouse in 2017, I weighed 80kg. At my height of 1.53m, this is quite far in the obese range.

Yet my body image wasn’t as much of a concern to me at the time. Yes, I hated the way I looked, but at the same time I was too careless and unmotivated to change my habits. I had stopped purging for the most part by the time I moved in with my spouse, although I still occasionally did it as a form of emotion regulation.

Now, I’ve been at a healthy weight for about a year. Don’t ask me how I got here, as honestly I don’t really know. I mean, yes, I’ve been supported by a dietitian since early 2022, but honestly I can’t quite say I follow her advice. I mean, okay, I no longer binge due to my food being locked away, but I do snack on “bad” foods all the time.

My body image, honestly, is still as screwed as it always was. I still swing between underestimating and overestimating my size, between hating my body and not caring about it. I still purge occasionally, though not really out of a wish to lose weight, but more out of a need to self-regulate.

Looking back, I don’t think I ever had a genuine eating disorder. I mean, I might’ve at one point met the criteria for binge eating disorder, but I’m not so sure about that. I think my disordered eating is really more a symptom of my emotion regulation difficulties.