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.

#WeekendCoffeeShare (April 13, 2024)

Posted on by Astrid

Hi everyone. How have you been? I’m joining #WeekendCoffeeShare today. I’m writing this post in the afternoon on Saturday, but might not finish it until the evening as I’ll try to fully enjoy my one-on-one support time while there’s staff I get along with well in the home today. It’s a little warm for coffee, so if you’d like a cup of that, fine by me, but I could also offer you orange and tangerine-flavored Dubbelfrisss. I also should still have a couple Mars ice cream bars in the freezer. Let’s have a drink or ice cream and let’s catch up.

If we were having coffee (as I always say), first, I’d talk about the weather. It’s been on the warm side for April here. Last week Saturday, the daytime temperature even rose to 25°C. Yesterday and today, we got daytime highs of 21 and 22°C respectively. The rest of this week, the temps have been lower and we did get some rain. Next week, we’re supposed to get daytime temps barely above 10°C, which I don’t like. However, that’s probably closer to normal.

If we were having coffee, next I’d tell you all that I’m still going strong keeping up with my physical activity by walking everyday. So far, I’ve closed all three of my activity rings on my Apple Watch each day since the beginning of the month (and possibly a few days at the end of March too. I’m aiming for a perfect month with respect to my movement ring at least, which I haven’t had since last September.

If we were having coffee, I’d share that I finally got the long-awaited orthopedic shoes. They fit well, but the brace that’s in them doesn’t effectively help my really bad drop foot and as a result, the left shoe got noticeably damaged after only two fifteen-minute walks.

If we were having coffee, I’d tell you that, last Sunday, my spouse and I together worked on a polymer clay project. I’d proposed we create a unicorn, but my spouse came up with the idea of crafting a triceratops (“unicorn dino” with three horns) instead. It was fun, but definitely an exercise in letting go of my need for control.

Polymer Clay Triceratops

If we were having coffee, I’d tell you that the rest of the week was quite hard. I’ve been struggling with feeling quite depressed lately. I have been feeling like my world is becoming smaller and smaller with all the things I cannot do. It’s been more so on my mind lately given that many of my fellow residents are going on the home’s yearly week-long sleepaway camp at the end of the month and it’s not even been asked to me directly whether I wanted to go too. Rather, I overheard the staff talking about the camp a few months back and mumbled about it not appealing to me and that’s the end of it. I’m supposed to stick to my day schedule, which currently consists mostly of walking around institution grounds and playing dice games. Some staff say I might be able to be in the communal room more, but to be honest I don’t care about being in the communal room just sitting around.

Yesterday, I tried making a cheesecake with my assigned staff in the communal room but got overloaded by one of the other clients (who will stay here during the camp as well). It led me to spiral into a massive emotional outburst. After all, now everyone tells me I’ll never have a better life anywhere anyway so I’d better accept the life I have now. Why didn’t anyone tell me this two years ago? The answer is simple: at least some of the people at the care facility in Raalte secretly wanted to get rid of me. This is intensely saddening to me.

If we were having coffee, I would end on a positive note though by saying that one of the staff who told me to accept my life yesterday, offered to take me on a short car trip to Deventer this afternoon. We had a cup of coffee (I decided to buy both of ours) and walked around the marketplace, where the staff bought me a stroopwafel and I bought a small serving of garlic-filled olives.

Foods I Would Eat If Calories Or Nutrition Didn’t Matter

Posted on by Astrid

Hi everyone. So I gave up on the #AtoZChallenge, but I’m not giving up on blogging more regularly this month. Today, I’m participating in Thursday Thirteen, even though it’s still Wednesday. This week, I am sharing foods I would eat if nutrition or calories didn’t matter.

1. Crunchy muesli. I currently eat regular muesli with my quark for breakfast most days and have the crunchy kind only as a treat. If calories or nutrition weren’t an issue, I’d gladly swap it for the crunchy kind. I’d also vary the flavors, eating multifruit crunchy muesli, nut crunchy muesli and coconut crunchy muesli. Currently, since I only have the crunchy kind as a treat, I usually have the nut one.

2. Peanut butter. Okay, that’s not a change from my usual diet, as I usually eat that most days now that I no longer need to lose weight and can choose whichever topping I like on my bread.

3. Chicken. Give me chicken almost every day! I love some good hot wings, chicken tenders or any kind of fried chicken.

4. Licorice. Particularly, Venco’s honey-flavored licorice.

5. Winegums. I’ve never figured out what these are called in English and my screen reader mispronounces them (they’re pronounced “wine gums”), even though the packaging here in the Netherlands advertises them as “real English winegums”. I love them though.

6. Blueberries. Okay, you’d expect me to list pizza, pancakes and fries here, and I might, but I’d probably miss fruits and veggies if I just ate those. I would have to add in another rule to my “not an issue” here though: that cost shouldn’t be an issue either.

7. Pasta. I would definitely eat a ton of pasta and it wouldn’t matter if it was whole grain (which we get here) or not. I in fact like the whole grain variety at least as much as the white pasta.

8. White rice. My care agency’s meal delivery service provides only brown rice meals, which I’ve come to tolerate but if calories and nutrition weren’t an issue, I’d definitely eat white rice.

9. Chips. Particularly Pringles.

10. Salami. I hardly eat that now because it’s not the healthiest, but I’d certainly top my hot sandwiches with it (along with some cheese) if calories didn’t matter.

11. Stroopwafels. And certain other types of large cookies I love. I am quite a picky eater even where it comes to treats, so it isn’t like I’d eat every biscuit on the market. Stroopwafels though, yum!

12. Curly fries. I love those! Can’t explain why the curly kind are better than the regular ones, but they are.

13. Broccoli. I need to add in a vegetable and my favorite is broccoli. It’s absolutely the most versatile vegetable out there if you ask me.

What food would you eat far more of than you currently do if calories or nutrition weren’t an issue?

Gratitude: Big Things I Am Grateful For Right Now #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter G post in the #AtoZChallenge. Today, I want to share what I’m grateful for. Specifically, I want to share the bigger, more important things in life I’m grateful for right now. Here goes.

First is my relative health. I am at a healthy weight, am able to walk about 5km at a time on good days and generally sleep about eight hours a night. I haven’t felt truly well physically in, well, forever, but I do feel okay.

Next up is food. I don’t have to go hungry. In fact, even though the meal delivery service meals are yucky most of the time, my breakfasts and lunches are good. And the meal delivery service meals are okay in terms of nutritional requirements. Moreover, when I really can’t stand the food we get here, I can afford to buy myself something else.

Finances are up next. When answering some questions for a parody voting guide back in the fall, one of them was whether you have a good income. Even though I’m on benefits, I answered “Yes”. I don’t have to worry about money generally.

Next is the fact that I have a roof over my head. Two, in fact, if counting my and my spouse’s house in Lobith.

Then, of course, I need to mention my spouse. Our relationship has survived many hurdles, so I’m pretty sure we’ll always be soulmates.

With my spouse come my in-laws. I am so lucky to have them! My mother-in-law is my informal representative and my family contact for the care home.

These are just a few of the things I’m grateful for. I could go on to mention the fact that I have a nice bed to sleep in, technology that allows me to communicate with the world and spend my leisure time, and so on and so forth. But instead, I’ll leave you with just this: right now, I’m grateful to be alive.

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.

Enneagram: I’m a Type Four! #AtoZChallenge

Posted on by Astrid

Hi everyone. Oh well, once again I’m late, extremely late to the party. For today’s post in the #AtoZChallenge, I thought I’d muse about the Enneagram.

The Enneagram, for those not aware, is a spiritually-based personality typing system consisting of nine different types. They are all interconnected in various ways. I, for instance, am a type Four (“the Individualist”), but I do share traits with both type Three (“the Achiever”) and type Five (“the Observer”). My Five wing, though, is strongest.

I’m getting ahead of myself though. What’s a Four, exactly? Fours’ core vice is envy. Fours’ core motivation is to express themselves and be understood as the unique individuals they are. Their core fear is not having an identity or significance. As a result, Fours are self-absorbed, emotional yet creative and empathetic.

When in distress, a Four will move closer to resemble the bad qualities of a type Two (“the Helper”) and become clingy. When feeling particularly well though, a Four will move closer to exhibiting the positive qualities of a type One (“the Perfectionist”) by being more objective and principled.

I will illustrate this using an example from my own life. I am often envious of people I perceive to have better quality of care than me. When I’m my normal self, I feel this envy but can keep it at bay. When distressed though, I show it more and become extra clingy to my staff. On the other hand, when I’m feeling well, I can more objectively view that no, in fact, no-one is receiving optimal care.

At its worst, Fours are called “Defectives”, because they experience their own pain so deeply. I wrote about this last January. I really do hope that, over time, I will grow into a healthier Four. Like I may’ve said then too, the healthiest version of the Four is the “Appreciator”. This makes sense, in that Fours (at least, healthy Fours) experience positive emotions and artistic and natural beauty at a deep level too.

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.

Aphantasia and Alexithymia #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to the #AtoZChallenge for 2024, letter A. I don’t have a theme, but I thought I’d do a repeat of what I did several years ago (I think it was in 2019), sharing posts on topics relevant to myself. I might still go off on a tangent every now and again. Awareness posts are one of my strengths and I’ve covered autism more than enough, so today I thought I’d cover two subjects I’m still relatively new to myself: aphantasia and alexithymia.

Aphantasia is also known as “mental blindness”, although it can be related to any of the senses. It’s an inability to form a mental image of something (or to imagine a sound, smell, whatever). As it turns out, most people can see relatively vivid images in their mind’s eye when they think of an object or person even when said object or person isn’t with them right then. They can also picture a scene, such as a beach scene, in their mind’s eye. I, however, can only picture objects and people very vaguely if at all, even when they’re things I used to be able to see in real life when I still had some sight.

Moreover, like I said, aphantasia can affect the other senses too. This was what made me realize I probably do in fact have aphantasia and am not just a blind person who has forgotten what it’s like to be able to see. After all, when doing a meditation practice that, for instance, tells me to imagine a beach scene, including hearing the waves crashing against the beach, seagulls making their sounds in the distance, feeling the sand between my toes, etc., I can’t. And it’s not for lack of trying. I mean, I remember once, many years ago, one of the child alters creating an inner beach by writing its description out here on the blog. I’m pretty sure that wasn’t actually effective.

Aphantasia is related to a phenomenon I did hear about several years ago, called alexithymia. This is the inability to recognize, identify and describe one’s own emotions. I remember getting a questionnaire on this at my last autism assessment in 2017, but was in denial about how significantly alexithymic I am in fact, because I, unlike the stereotype of alexithymia, don’t consider deep, emotional discussions a waste of time. In other words, I am not unwilling to describe my own feelings, but merely unable.

Neither alexithymia nor aphantasia are classified as disorders in their own right. They often co-occur with autism, which of course isn’t necessarily a disorder either but is classified as such and is, in my case, certainly disabling. Then again, so is my inability to identify my own emotions.