Gratitude List (April 26, 2024) #TToT

Posted on by Astrid

Hi everyone. How have you been? I’m participating in Ten Things of Thankful with a gratitude post once again. It’s been a while. I however have quite a few thankfuls to share, I think, so let’s go.

1. I’m grateful for homemade pizza. My spouse, mother-in-law and I made it together at my in-laws’ house (my father-in-law wasn’t there) last Saturday after the CP conference.

2. I’m grateful for a side-by-side bike ride on Sunday. I was assigned an extremely tall staff member for my one-on-one and, for those not aware, I am short myself. This makes walking with him quite a challenge, as we haven’t yet figured out a way for him to guide me that doesn’t cause me pain. However, I came up with the idea of biking instead.

3. I am grateful for the fact that my attempt at making overnight oats on Monday turned out to be a success! Last time I made them, I added way too much milk.

4. I am grateful because, on Tuesday, I was able to cook köfte for my fellow residents and staff. It took me quite some time, but that’s not a problem.

5. I am grateful for French fries on Wednesday. Oh, I’m making more than half of this list about food, but okay.

6. I am grateful for an opportunity to go swimming yesterday. I had gone swimming twice last week, once with my own home’s residents and once with a small group. I hadn’t expected to be able to join the small group this week again and swimming for my home was canceled because most residents were on the annual trip. However, I was able to join the small group anyway.

7. I am grateful for a trip to the institution museum this afternoon. It’s a really small museum, but it was interesting to learn about the history of the institution. Plus, we got free mini pancakes! Oh wait, that’s another food-related thankful…

8. I’m grateful for a day without rain today. We had rain most of the week and, though I could go on walks everyday inbetween showers, I couldn’t go out nearly as much as I’d have liked. Today though was a rain-free day and we even had a bit of sunshine.

9. I am grateful for an appointment with the nurse practitioner who works at my local GP practice re my decreasing mobility. I’ll have a physical therapy appt soon too but I’d really like to know what’s causing my mobility impairment (CP or something else) and whether a decrease in mobility is to be expected or what can be done about it.

10. Last but not least, I am so grateful I seem to be slowly crawling out of the pit of depression I was in.

Daily Habits For a More Meaningful Life

Posted on by Astrid

Hi everyone. Today was a good day for once. I went swimming for the first time in a long while. No, that’s a lie, since I went swimming with my fellow residents yesterday too. What I meant is that I was originally allocated this spot on Thursdays for swimming but haven’t been able to go yet for staffing-related reasons. Yay for an opportunity to go today!

This isn’t something I can do everyday or even each week, but there are lots of activities I could incorporate into my daily routine that will give me a more meaningful life. Today I’m joining Thursday Thirteen with a list of those.

1. Shower or wash myself. Personal hygiene often goes out the window when I’m depressed. Though I don’t really see its point in boosting my mood, in that for me the feeling of being clean doesn’t do that, I can at least say I accomplished something that day.

2. Brush my teeth. Same as above really.

3. Meditate. I’m not the kind of woman who is good at long body scans or the like, but I do love shorter, affirmation-based meditations.

4. Journal. This is something I don’t do nearly often enough. I really should be incorporating daily time to journal into my calendar. I love writing stream-of-consciousness style, but this isn’t usually suited for this blog.

5. Read. I don’t mean I should be reading a novel a day or something. Even a chapter in a children’s book could count. Like, today I read a few chapters in the second book in the Unicorn Academy series.

6. Diffuse some essential oils (or fragrance oils) in my diffuser. I’m not a strong believer in aromatherapy. I mean, I’ve literally slept like a log smelling a combo of all citrus oils over the past few nights. I do believe smelling good scents can help my mood though.

7. Listen to music. I really feel that music, any kind of music, can be good for my mental health. Whether it’s soothing instrumental music to sleep to or loud EDM when I need a confidence boost.

8. Walk. I do this almost each day already, but I’m adding it to this list anyway in case there’s a time when I forget about its importance in boosting my mood.

9. Move in general. I was going to list dancing as a separate item on this list, but then, though it would be easier to get to thirteen, it would be harder to incorporate everything into each day. I honestly feel that movement in general, whether it is dancing, yoga, cycling, swimming or whatever, helps my mood.

10. Drink a cup of green tea. I definitely feel that a daily cup of green tea could add to my mental wellbeing. Maybe it’s the fact that I usually have those with the staff members I trust a little when talking though.

11. Talk to other people, reach out for support. When there’s a day I cannot talk to any staff because there are all staff I don’t trust, I can always talk to my spouse or mother-in-law.

12. Write down my positives and negatives for the day. This usually helps me remember that, even on the hardest days, there are some moments I’ve felt okay.

13. Remember: pain is temporary, giving up is forever.

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.

Flash Fiction: November

Posted on by Astrid

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

Posted on by Astrid

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

Posted on by Astrid

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

Posted on by Astrid

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

Posted on by Astrid

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

Posted on by Astrid

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