#WeekendCoffeeShare (April 13, 2024)

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.

Flash Fiction: November

She had always felt that November was the hardest month. Filled with enough darkness to completely cloud her mind, but not enough cold to freeze her thoughts. It didn’t help that the month was filled with just a little too many memories of her totally losing the grip on life. She realized maybe the crises were more a result of her depression than her depression being the result of her memories, but either way she seemed stuck. No therapy or medication had been able to alleviate the gloom that was November yet.

It wasn’t like she exactly wanted to die. Not during these crises and not now. Sometimes though, she looked for an exit, an escape from the deep pit that is this month. Maybe, she mused, snow would be the easy way out.


This post was written for this week’s Prosery. It’s more than a little autobiographical, but since our pieces have to be flash fiction, I decided to write it in third person perspective.

Joy in April

Oh my, how time flies! I fully intended to write my monthly update on my word of the year, which is “JOY”, last Thursday, but forgot. Thankfully, there’s still about ten hours left in April to share my reflections on how I did this past month. I am linking up with the Word of the Year linky, as well as Lisa’s One Word link-up.

Early in the month, I did quite well. I enjoyed my craft of polymer clay to the fullest. Among other things, I discovered color mixing. I was full of new ideas and really burst with energy.

I also enjoyed quiet time and my spiritual life. I was engaging with the Bible on a daily basis.

I also spent time involved with personal growth in general, watching videos on, for example, the enneagram. This is not necessarily Christian, but it is not against the faith either and there are many Christian enneagram experts.

Unfortunately, as the month progressed, I slipped into an emotional rut. I have been neglecting my Bible reading and my quiet time now involves falling asleep to instrumental music. That isn’t bad in itself, but I’d really like to spend more time focusing on God. I’ve noticed, in fact, that I’m drifting away from Him. I could blame this on my low mood, but really it could be the other way around too.

I also haven’t been enjoying my creativity as much as I used to. This goes for both my polymer clay and my blogging. With blogging, this may have to do with the fact that the #AtoZChallenge is coming to an end and the last letters are usually harder than the first. However, I don’t engage as much with other bloggers as I used to early in the month either.

I am also not enjoying my food as much as I used to. Like, we had pizza yesterday. While I appreciated it, I didn’t savor the food as much as I would like to have done. I am reminded in this sense of the mindful eating exercise I did in early March and how I’d really like to apply it to foods I love more.

Overall, early in the month, I did quite well, but towards the end of the month, I’ve been slipping towards the opposite of joy. This brings me to one of the exercises that Lisa provided in her One Word E-mail for this month (I think), which was to look to the opposites of your word and reflect on what they can tell you about your word. Some of the most relevant antonyms of joy include:


  • Depression: well, I wouldn’t say I’m depressed (yet), in the clinical sense. Having been there, I know that my current low mood is different, but I do need to watch out that I don’t slip into the pit of depression.

  • Melancholy: I’ve definitely been feeling this way. Melancholy is a bit of a low mood, with an edge of romanticism attached. I feel this resonates with me in relation to how I feel about living in my current care home.

  • Misery: this sounds a bit, well, too negative for me right now. A state I want to avoid at all cost.

  • Sadness: yes, I’ve felt sad when my fellow client passed away early this month, but other than that, sadness just doesn’t cut it.

  • Seriousness: certainly, yes. I’ve been far too serious about my life lately, which has resulted in my not enjoying the fun parts.

All this being said, in the coming month, I’m hoping to gain some joy back and crawl out of the pit of melancholy and seriousness.

Poem: The Monster

Sometimes
It screams
Loudly
Telling me
To give up once and for all

Other times
It whispers
Softly
Luring me
To take that final step

Sometimes
It seems silent
Just for a little while
But it always returns
The monster
Wanting me to die


This poem was written for Friday Writings #14, for which the optional prompt this week is to write about monsters. I am also joining dVerse’s Open Link. I’ve shared poetry about my depression and recurring suicidal ideation in both linkies before. I often refer to this state as “the monster”, so this theme came to mind when I read the Friday Writings prompt.

Poem: Invisible Pain

You can’t see it
The pain
Inside of me
So you assume
It isn’t there

You can’t hear them
The screams
Inside my head
So you assume
They aren’t there

You can’t feel it
The suffering
Which I endure
So you assume
That I’m just fine

I wish I could show you
The agony
I go through
So you’d know
What it’s truly like

The monster
Keeps me hidden
Silent
Untouchable
Trapped
Inside this world of darkness

If only
You could reach in
See or hear or feel
The pain
Then maybe
I wouldn’t feel so isolated
So invisible


This poem was written for Friday Writings, for which the optional prompt this week is to write about pain. I am also joining dVerse’s Open Link Night.

Suicidal Ideation in Childhood: Some Reflections

Earlier today, someone online asked a group of autistic women about suicidal ideation in childhood and at what age it started. It is common knowledge that depression and suicidality are near-universal among autistics. After all, we are taught, be it consciously or not, that our autistic way of expressing ourselves is unacceptable.

I remember my first autistic burnout at age five. I don’t have clear, verbal memories of the experience, but my inner five-year-old might and I do experience somatic and emotional flashbacks. The family story about the event is that I was ill with the flu. At the same time (coincidentally or not) my parents were making arrangements for me to start at the school for the visually impaired. I started in mid-May, before the end of the school year.

At the time, I wasn’t actively suicidal as far as I’m aware. I started having those thoughts when I was around age seven. I have a vague memory of telling my mother that I wanted to die sometime around that age.

Interestingly, I never made suicide attempts. Even the times I planned my “final day alive”, I never had any idea how I was going to go about actually doing it. This fact was later used to “prove” that I wasn’t serious.

I mean, when I was 21 and admitted to the psych unit, my parents came to tell the psychiatrist that I’d threatened suicide ever since I was seven-years-old, almost adding triumphantly: “See, and here she is, alive!” They said I just wanted attention.

Then again, is it somehow bad that I, deep down, didn’t really want to die? I just didn’t see any alternative. Of course I didn’t want to die by suicide. I imagine at least most people don’t really want to; instead, they want a better life. But I couldn’t get that at that time or so I thought. Does that make me a bad person? I don’t think so.

It’s so sad that, at least in my family, the red flag of long-time, severe suffering was ignored as a sign of “attention-seeking”. As if a seven-year-old even has the capacity to use suicide threats to manipulate their parents for mere attention without anything else going on with them.

Desperate Yet Determined #WotW

Hi everyone. What a week it’s been. I’ve been swinging between despair and determination, sometimes experiencing both at the same time. Let me share.

Last week, I was in a very depressive, dysregulated, suicidal state. I finally managed to tell my assigned home staff about the nature of the “monster” in me, ie. my suicidal thoughts. She decided to E-mail the current behavior specialist assigned to my care home asking her for help in finding me someone to talk to about this. I mean, I have my nurse practitioner at mental health, but I cannot seem to get it through to him how I’m truly feeling.

I also E-mailed my nurse practitioner, only to get a response saying we’ll talk about it on the 23rd. Well, that was the final straw for me and I’ve pretty much decided I’ve had it with treatment with him. I mean, I know I should have called the team, but it’s not like this is the first time he doesn’t pick up on my signals, be it in E-mails, on the phone or even face-to-face. Our talks have pretty much been meaningless forever. Honestly, the only thing he’s helped me with is getting the right medication, the topiramate, for my nightmares.

This week, I’ve been swung back and forth between the thought that truly there is no hope for me and the thought that, maybe, if I stand my ground firmly enough, I will be able to access the right help somewhere.

I’ve also been ruminating over those two years I’ve been in treatment with my current mental health team. My nurse practitioner told me a year ago that “we could search half the country for a suitable therapist but that wouldn’t make sense”, adding that we’re stuck with each other (as if it was something he hadn’t just decided on himself). Half a year earlier, he wanted to refer me to the specialist autism center, but that got shoved off the table for a reason I was never told. I have been saying for all of the two years that I’ve been in treatment with this team that there are two things I want to work on: my trauma-related symptoms and seeing if I can lower my antipsychotic. Neither has even remotely been started yet. After two years, I’m done.

I am not so naive to think my nurse practitioner is actually going to give in and actually help me find someone else this time around. I have a tiny bit of hope focused on the behavior specialist for my care home, but not much. Even so, I’m pretty sure I can get by with no help from any mental health professionals at all. It won’t be easy on me or my staff, and that’s one reason my staff might pressure me to stick with mental health. Thankfully, so far they don’t.

On the physical health front, I’ve also been swung back and forth between despair and determination. After thinking kind of wishfully that my abdominal discomfort was almost gone last week, it returned on Saturday and has been pretty bad all of this week. Nonetheless, my GP wants me to stick to my current regimen of one magnesium tablet (laxative) per day for two more weeks and have the staff call back to evaluate then. I was pretty upset yesterday when I heard this. Now I’m more resigned to the idea that there’s no hope for improvement of my symptoms.

Overall, right now, despair is taking over, but thankfully I’m not actively suicidal right now. There must be some tiny flame of determination in me somewhere.

How was your week?

Word of the Week linky

Gratitude List (November 12, 2021) #TToT

Hi everyone. I’ve really been struggling lately, which is one reason I haven’t written much. To get myself out of my rut, I thought I’d share a gratitude list. As usual, I’m joining Ten Things of Thankful or #TToT for short. Here goes.

1. I am grateful for salami pizza. We ordered delivery from the local Italian restaurant on Sunday and I had this.

2. I am grateful for the night staff who helped me calm even the slightest bit on Sunday night when I was experiencing severe mood dysregulation.

3. I am grateful for a new book to immerse myself into. I’m reading a collection of short, autobiographical stories from a Dutch GP.

4. I am grateful for relatively good weather again over the past week. We’ve hardly had any rain and, though the temperature was quite low for my liking, at least it wasn’t freezing.

5. I am grateful my abdominal discomfort seems almost gone. I think I’ve finally reached the right dosage of magnesium. We aren’t to evaluate it with my GP until sometime next week though. Fingers crossed.

6. I am grateful my assigned home staff has returned to work part-time again. Like I mentioned before, she had been on sick leave since late September, but she seems to be recovering. She worked part of my day activities shift on Tuesday and my evening one-on-one today.

7. I am grateful for white chocolate. I bought myself a chocolate bar yesterday. I have it in my locked kitchen cupboard so that I can’t consume it all at once, but that way I do enjoy it more.

8. I am grateful for new essential oils. I ordered cypress, mandarin and lavender. Lavender, I’d had before but had used up. The others, I’d never used before. I did have to throw out a few others that I either didn’t like or that had expired, but that’s okay.

9. I am grateful I finished my polymer clay owl. Some people think it looks more like a turkey, but oh well. I’ll write a separate post on how I made it with more pictures later.

10. I am grateful for my staff. I have been extremely depressed lately and have been convinced that they should and will abandon me. While I heard from the manager yesterday that three staff are indeed leaving my care home, this apparently has nothing to do with me and the staff I have the best relationship with, aren’t leaving (yet).

What are you grateful for?

Not the End

My mind is exploding with chaos. So many thoughts, feelings, wishes, voices, dreams and visions float through it. It is so overloaded I am tempted to give up. Through the chaos, I can hear the monster speak. “Give in,” it lures, “go to the clouds.” I can almost picture the heavenly realm, the place the monster is trying to get me to go to, in my mind’s eye. I cry out: “No!” I am bombarded yet I stand. I won’t give up. This is not the end.


This piece was written for yesterday’s Prosery. The idea of this challenge is to use a given line of poetry in a piece of prose. The line we were asked to use is: “I am bombarded yet I stand.”

In the above piece, I try to capture what it is like to be overloaded with depressive and suicidal thoughts. Yet, I also aim to make it clear that I am fighting back. After all, this is not the end.

Fight for the Light #SoCS

SoCS Badge 2019-2020

Sigh
I fight
For the light
That’s out of sight

Those were the words that popped up into my mind when I read this week’s Stream of Consciousness Saturday prompt. I have absolutely no idea why these words popped up. I guess it’s something to do with the lingering effects of my crisis two weeks ago. I’m still kind of depressed.

However, there’s also some hope shining through in my words. Just because the light is out of sight, doesn’t mean I don’t fight to find it. I am blind, so anything is basically out of sight. Well, not literal light, since I have light perception, albeit only a little bit. Anything else, really, is out of sight for me.

I’ve been pondering object permanence recently. This is the ability to know that, if an object (or person) is out of sight, it is still in existence. This ability is usually acquired at around age eighteen months, so my niece should have it. I rationally do too. Emotionally though, not so much. Though I don’t literally feel that a person who has left my proximity, no longer exists, I usually half-joke that they might just as well be on the North Pole. I wonder whether this struggle with some level of object permanence, could be due to my blindness. I guess not though.