The Wednesday HodgePodge (May 4, 2022)

Hi everyone. I’m participating in the Wednesday HodgePodge once again. Here are Joyce’s questions and my responses.

1. May Day! May Day!…last time you shouted for help? Or maybe just asked?
I’d honestly never heard that expression. That being said, I shout for help quite regularly, most commonly when I’m having a horrible flashback or panic attack. Last Monday, I probably didn’t shout for help, but did plea for help. My one-on-one support staff had left me alone because I’d told her to go away in an irritable voice while melting down. This caused me to spiral into crisis. I will spare you all the details, but I eventually came to my senses and was able to cry out for help.

2. What’s something you may do this month?
Visit my sister and her family. I most likely will, since my sister is expecting a baby very soon. Other than that, there are just too many things I may or may not do, such as finish a book, get to another polymer clay project, etc.

3. “April showers bring May flowers”…is this true where you live? What’s blooming? What’s your favorite springtime blossom?
It’s somewhat true, but we haven’t had that much rain in April this year. I’m not really sure what’s blooming here. I do know one of the nearby care homes has tulips blooming in its garden. My favorite springtime flowers are probably hyacinths, but I love many others.

4. What’s something you learned at your mother’s knee?
I am reminded immediately of a nursery rhyme that goes “One, two, three, four, paper hat, paper hat.”. When my mother would count to four, I’d always reply “Paper hat”. When my father would count to four, conversely, even as a toddler, I’d reply: “Five!”.

5. Share a thought about motherhood.
Now we’re probably supposed to share something positive, such as how beautiful the gift of motherhood is or something. I, however, am not a mother and don’t have the greatest memories of my own mother’s mothering me. Besides, my father was my primary caretaker. Not that my memories of him are any better. All that being said, I feel strongly that mothering is a skill that doesn’t necessarily come naturally as soon as a child comes out of its mother’s womb. I wish it were this way!

6. Insert your own random thought here.
Since it’s Liberation Day (from WWII) tomorrow here, I would like to take a moment to show my gratitude for living in freedom, peace and in a democracy.

Dream Small

It’s interesting that, since deciding to want to start the process of finding me a more suitable care home, I’ve had the lyrics to the Josh Wilson song “Dream Small” in my head a lot. This is a Christian song about the fact that, while there’s nothing wrong with wanting to change the world in big ways, small contributions matter too.

Of course, that’s probably not the meaning behind these lyrics being stuck in my head. I don’t dream of ending world poverty or solving the climate crisis. In fact, the reason I want to move to another care home, has little to do with wanting to improve other people’s lives.

However, in a sense, the title of this song speaks to me, as do certain points in the lyrics. I may want to change my life in a big way by moving to another care home (assuming one can be found), but that doesn’t mean I don’t need to pay attention to the little ways in which I can improve my life right now. I still need to focus my attention on my current quality of life.

I am grateful that I finally found the motivation to look up a polymer clay video tutorial again. I couldn’t at the time actually go and work on the project taught in the tutorial, but I will later this week.

I am also grateful to have started reading again. I finally picked up Thrive by Kenneth Oppel, since I really need to finish the Overthrow trilogy even though Hatch was a bit disappointing.

All that being said, dreaming small does mean that small setbacks can get me to become unstable easily. For example, yesterday I found out that the headphones I bought at the end of March and that stopped working two weeks later, most likely hadn’t been sent out to the manufacturer by the store I bought them at. The lack of clarity about this sent me spiraling out of control. It may just be a pair of headphones – material things, money if you will -, but to me, the situation was quite unbearable.

With respect to the care home situation, I am also reminded of a fellow patient on the locked psych unit who told me I needed to focus on changing myself, not my living situation. This was over fourteen years and four living places ago. I do not fully agree, but partly, I do, in the sense that my distress is partly caused by internal sources. If I keep focusing my attention on external circumstances, these internal sources will not change. If I can reframe my thinking around those, I can decrease my distress. The problem is, I can’t usually reframe my thinking.

Reclaiming November

Tomorrow is November 1. November is the hardest month of the year, since it is the month in which I ended in crisis in 2007.

Thirteen years later, it was also the month in which I finally broke down and admitted I needed more support than just the care facility’s group home support. On November 8 of last year, I broke down when a staff (the same staff who is now my assigned home staff) asked me to either calm down or go to my room when I was acting irritated at the other clients’ noises. My reaction wasn’t pretty: I hit the staff, screamed I hated her and cried out that indeed, as I’d been saying all along, if I showed who I truly was, she’d abandon me. She didn’t.

During the days that followed, I experienced significant dysregulation, including some near-psychotic symptoms and a lot of sadness. One day, I was crying my eyes out in my room when another staff came in and said she was going to spend her entire two-hour shift with me. We talked and she asked me whether I’d ever heard of one-on-one support. I had, but asked her to elaborate anyway. She did and asked me whether I wanted that. “Yes,” I said. The next day, the staff I’d hit and my then assigned home staff made the paperwork in order, because I had to sign a letter to the manager formally asking for more support. By mid-November, the wheels were set in motion for me to get one-on-one support and my one-on-one was pretty soon effectively started.

Now, as we’re approaching another November, I’m reclaiming the month. I don’t want this to be the month I landed in crisis so many years ago for the rest of my life. Instead, I want it to be the month I chose to get the support I need. I am choosing to stand up for myself, not just because crisis states force me, but because I have a right to do so.

Joining My Vivid Blog’s prompt: “Tomorrow”.

#WeekendCoffeeShare (October 17, 2021)

Hi everyone. I’m rather late joining #WeekendCoffeeShare this week and I’m afraid there’s no coffee left. You can help yourself to a soft drink or a glass of water though. I also have chips in my cupboard. After yesterday’s crying fit over there only being the wrong flavor left, I decided to buy some myself. I did ask the staff to put them into a cupboard which they only have the keys to, but I’m pretty sure they’ll love to open it for you. Let’s have a drink and a handful of chips and let’s catch up.

If we were having coffee (or a soft drink and chips), I’d share that this week is still quite meh. Early in the week, I was feeling a little more optimistic at the prospect of starting my increased dosage of topiramate soon. I started it on Friday and so far, unfortunately, no change. I am grateful though for no side effects either.

Over the weekend, I’ve really been struggling. I landed in a bit of a crisis earlier this evening, but thankfully pulled myself out of it. I did E-mail my nurse practitioner and CPN at mental health to let them know I’m worried about deteriorating. My husband said I’m not, but the fact that I keep increasing my meds, tells me otherwise

If we were having coffee, I’d moan about my orthopedic footwear after all. The shoes squeak and, though I’m still not in terrible pain, I cannot walk for more than twenty minutes on them without them feeling horribly uncomfortable. Mostly my left foot, the foot on which I wear the AFO, starts to drag. I haven’t heard back from the physical therapist, but am pretty sure she’ll just say I need to push through.

If we were having coffee, I would show you all the soap I made for my assigned staff, the one who’s on sick leave. I heard last Thursday that she’ll remain off work until the middle of November or so due to among other things her needing to use up all her days off for the year or they’ll disappear.

Like I said yesterday, the soap contains vetiver, lavandin and clary sage essential oils. I decided to use a white soap base and no colorants, because I felt the scents would speak for themselves.

If we were having coffee, lastly I would share that my husband came by today. We drove to Subway for lunch. I dutifully wanted to get out my CoronaCheck app, but my husband told me to wait. As he expected, they didn’t ask us for it. The taco beef wrap I chose, was rather boring and I’m pretty sure the mince they put in it was vegetarian rather than beef. Oh well, now at least I know what not to choose next time.

How have you been?

#WeekendCoffeeShare (October 3, 2021)

Hi everyone on this rainy Sunday. I’m joining #WeekendCoffeeShare this afternoon. I may add another post for Blogtober and the 31-day writing challenge, though neither challenge requires you to follow a topic or prompts. In this sense, this post could count as my daily post for October 3. We’ll see if I can still find time to write a post on today’s optional prompt too.

As usual, I just had my afternoon coffee, but I’m pretty sure the other clients are still having theirs. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week is a bit meh. It seems it’s the beginning of fall that’s causing me to feel more depressed and less inspired than usual. I have been going for a few walks over the week, but not many due to the rain. I also hardly did anything crafty. Today, I spent a lot of the morning and early afternoon in bed.

If we were having coffee, I’d share about my care plan review last Thursday. Like I said in my previous posts, it went mostly as expected. It did create some stress in me related to the upcoming reassessment of my one-on-one care. The behavior specialist also told me at this meeting that she’s going to work at another care facility that’s part of this agency, so she will no longer be assigned to my case. It’s not yet decided who her successor will be, but that should become clear pretty soon.

If we were having coffee, I’d tell you that, the evening after the care plan review, my assigned home support staff left her shift early due to being sick. Everyone else is telling me she just has the flu, but I somehow got it in my had that she is suffering burnout and it’s my fault for having sucked up her energy too much.

This situation led to a bit of a crisis Friday night. I left my room initially looking for the late shift, but she’d already left the building. However, my room-leaving detector didn’t alert the night staff yet, probably because it was just before 10:30PM. The people who would receive my alerts at night, are at the main institution in another village and they are then supposed to call the night shift here. In other words, there is no way I can alert the night shift here directly. I went looking for help, but the outside door of the home was already locked.

This led to a bit of a panic and I went into dissociative mode. I grabbed a chair and climbed over the half-door into the kitchen (the kitchen is locked at night to prevent me entering it and self-harming). I tried to self-harm in several ways, but thankfully didn’t really get hurt. When the night staff came to get another client to bed, she saw me and helped me to my room.

If we were having coffee, I’d tell you that, despite all the troubles, the week will likely end on a positive note. Several of us clients have not received meal delivery service meals this entire week because we were supposed to be emptying out the freezer. This did mean I got a lot of the same meals this past week and today I said, if I got noodles again, I’d ask my one-on-one to drive me to the supermarket so I could buy a salad or something. Turned out one of the other clients whose freezer was supposed to be emptied, didn’t fancy his meal for today either, so the staff agreed to order food from the local Italian restaurant. I will be getting a tuna pizza.

How have you been?

Hope and Faith

Today, Sadje’s Sunday Poser is about your rock in the storm. Who or what keeps you going when the times are tough?

For now, I could – should, maybe – easily say it’s my faith. I became a Christian last year and feel very much comforted knowing that, in the end, it’ll be okay. Not in this life, mind you. Jesus never promised us that there would not be any obstacles in this earthly life for us. Quite the opposite, in fact. We will still physically die and the Bible doesn’t promise Christians any easier end to their earthly life than non-believers. But in the end, in the Kingdom of God, it will be okay.

However, like I said, I didn’t become a believer until last year. I did kind of believe in “something” for many years, but that didn’t quite amount to much. So what kept me going until I started following Christ?

I guess the answer is as simple as the one above, and somewhat related too: hope. I always kept hope alive that, in the end, things would be okay. Even in the darkest depths of my suicidal crisis in 2007, there must’ve been a reason I in fact called my support worker to say goodbye rather than just killing myself without informing anyone. I felt, deep down, that there was still a way out of my darkness, even if I didn’t know what it was right at that moment.

At the time, my rescuers were the crisis service people in my parents’ city, who proposed I get admitted to the mental hospital.

That being said, I’ve never really felt that specific people are my rock in the storm. I mean, of course I appreciate my husband supporting me through everything. However, as unlikely as it is, I always have at the back of my mind the possibility that I’ll lose him at some point. That’s a residual effect of my having had very little stability in my life.

However, hope has always kept me going. It is interesting in this respect that most people who superficially know me, see me as a pessimist. I might look at things from a negative angle most of the time, but when it ultimately comes to it, I always have hope.

Riding the Train

Back when I still lived on my own in 2007, I would frequently ride the train. Or go to the train station planning to go on a train somewhere but melt down once at the platform. Then, people would often call the police.

I shared my experiences of riding the train, or wanting to do so, as an autistic and blind person on a public transportation users forum in 2008. I shared pretty much every little detail up till my crisis on November 2, which happened at a train station too. The person who had asked me to share, then pointed out that it might be a little TMI, but that’s how I am.


This piece was written for the Six Sentence Story blog hop, for which the prompt this week is “Train”.

Tanka: These Weird Times

Stay silent, listen
Hear the birds’ cheerful chirping
Hear the wind blowing
Hear the music of nature
Despite these times of crisis


I am pretty sure I already published this poem somewhere, but I can’t find it on here and I don’t post my poetry anywhere else. I found it in my Drafts app, which I sometimes use for creative writing. I originally wasn’t sure I wanted to post it to my blog and as I write this, still am not 100% sure.

It may not even be the most appropriate time for this poem. Most people are probably, understandably, tired of the pandemic and want it to end, not be at a crisis point. And honestly, I’m not sure where it is currently. I mean, I saw a headline today saying COVID is being fought well, but the virus fights back. Something like this. Let’s all hope this crisis is over with quickly.

I am using this as an attempt at working the block editor too, as on my iPhone I can of course no longer use the classic editor and the Drafts app works only with Apple devices. I was going to find a workaround, but then decided I would need to get acquainted with the block editor one day anyway. So, well… whatever.

I’m submitting this poem to dVerse’s Open Link Night.

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.

A Bottle of Hope

Today, I feel stuck in the twilight zone between good and bad. I’m not feeling as hopeless as I was two weeks ago, but I can’t quite say I’m feeling happy either. I really feel numb. This seems to be the story of my life anyhow. I’ve rarely felt truly happy. Sometimes, I feel dysregulated, desperate, out of control. Some other times, I feel a glimmer of joy. That rarely lasts long. This afternoon, I experienced such a glimmer of joy when making a necklace. Then this evening, I was in a small crisis again.

Still, I have this instinct to survive, to go on. I still keep this bottle of hope that I know at some level will always be available to me. Even at times when I’m most dysregulated, I haven’t intentionally taken steps that would really end my life. I still, deep down, have this will to continue.

Now if only I could put the energy I’m putting into merely keeping hope alive, into actually practising contentment. If only I could pick up that bottle of hope from the shelf, instead of letting it sit there until I (someday, probably never) find the perfect life circumstances. Keeping hope alive is one thing, but living a life of joy and contentment, is quite a bit further up there.

This post was written for Eugi’s Weekly Prompt and Michelle’s July 1 writing prompt