Trying to Celebrate Small Wins #JusJoJan

Posted on by Astrid

Hi everyone. I have been struggling with mixed feelings about my day schedule and the things I accomplish or don’t accomplish during the day. Sometimes, I feel like there’s been quite a lot I’ve done, but on other days, I focus on the hours I’ve spent staring at the wall.

The difference isn’t just dependent on how much I actually did in terms of crafting, cooking, walking, reading, etc. It’s sometimes also a matter of perspective. I mean, I spent most of my allowed activity time slots just chatting with staff today. I could focus on that and on the fact that, with some help, I could’ve turned them so much more productive. Then again, I could also focus on the things I did achieve. Today, for example, I crafted a polymer clay snake.

It frustrates me to no end that my day activity goal is so vague that it’ll be achieved regardless of what I do or don’t accomplish during the day. I had worded the main goal myself, saying I’d like to do at least one meaningful activity each day. To this, however, my then assigned staff added examples, including dice games, and a caveat that if it looks like I’m in distress or tired, the staff can suggest doing smalltalk or extra moments to lie in bed, saying everyone needs rest. By this logic, each day is meaningful even if I’d spent it entirely in bed.

And that’s not entirely untrue. What makes it untrue is the part where staff decide for me which activities give me meaning and when it’s appropriate for me not to engage in them. In other words, it’s worded as an excuse for staff not to help me find and engage in meaningful activities. If I chose to lie in bed all day, like I did last September when sick with probable COVID, it’s quite different from all the times staff have suggested I lie down. If I chose to be lazy, it’d be on me, but if the staff choose to be lazy and twist it to mean they’re meeting my needs, we’re having quite a different situation.

I do try to celebrate the small wins though. Like today’s snake. That doesn’t mean I can’t wish for improvement, particularly because a lot could be improved without me getting more support hours. Would it be harder on the staff? Possibly, but not necessarily. I mean, listening to me moan about my quality of life, is no doubt exhausting to some staff too. And besides, it isn’t my task to make staff’s work day meaningful.

However, it does help me personally to focus on the things I do achieve rather than the things I don’t. I’m genuinely happy about the snake I crafted. Yesterday, I even did two crafty activities and met my movement goal on my Apple Watch by walking. I try to celebrate that. Celebrating my small wins gives me joy.

This post was written in response to today’s prompt for #JusJoJan, which is “celebrate”.

Janie Mac I’m Nearly Forty…

Posted on by Astrid
Daily writing prompt
What are your thoughts on the concept of living a very long life?
View all responses

Last Monday, I had a meeting with the intellectual disability physician who prescribes my psychiatric medication. The first thing we needed to discuss, was me tapering my antipsychotic. That’s going on, thankfully. However,I also had been complaining for months about increasing tremors in my right leg and hand, decreased mobility and more pain. Unfortunately, according to her, there’s nothing that can be done about these issues to make them go away. I mean, she’s referring me to occupational therapy, but it’s not like that’s going to lessen my symptoms. More like make them more manageable, I hope.

She says my symptoms are due to the brain bleed I suffered as an infant. She however added: “You’re getting older.” Ouch! I’m turning forty this year. That’s not old, or is it?

I’ve always thought that I wouldn’t live a very long life. I mean, my paternal grandma made it to 94 and, when I was a child, my parents thought I took after her. Now, not so much. My other grandparents all lived to be in their late seventies or early eighties. My father will be 77 next week and my mother will be 71 in April. Familially speaking, I’m not at risk of dying young, even though my maternal grandmother suffered from heart disease and diabetes for decades before her death.

However, I do have the brain bleed. Cerebral palsy in itself doesn’t limit one’s life expectancy. Autism, statistically speaking, does. And it’s probably due to my mental health that I won’t make it to old age. I’ve had more close calls in the last few years than I’d like to admit.

My wife and I recently had a discussion about who would go first. She doesn’t cling to life as much as I do, but I’m far more impulsive. I hope both of us will make it to old age and in relatively good health too.

The above song has been on my mind for a few months already. My wife and I have been together eighteen years, but oh well…

Beating Myself Up Over Failed Intentions… #JusJoJan

Posted on by Astrid

Hi everyone. Today I’m struggling quite badly yet again. I’m feeling quite depressed and like life is slipping me by. That’s not good, but sometimes it’s the best that can be.

When I set my hopes for this year, I fully intended to experience more, yet here I am, six days into the year and I’ve abandoned Morning Pages, am in bed a lot again or just blabbering on to my staff about whatever.

However, feeling guilty about not having made the most out of the day, means even more of my time and energy is wasted. Rather than beating myself up over a day gone to waste, I’d much rather make the most out of each moment. And sometimes “the most” is pretty little.

About half an hour ago, I was talking on the phone with my wife again and responded to the question of what I’d done today by saying that I’d gone on a walk and played dice, so not much. Then I realized that I’d also made a necklace. Remembering that made me smile to myself.

Of course, my day schedule is still not working as it should and that might never change, but it’s up to me to make my life meaningful. And sometimes, that means hyperfixating on some random thing, like the fact that I almost certainly finally found the perfect recipe manager. It’s my fifth or so, so this did mean having to transfer my recipes from my previous one into this one. However, this did give me another opportunity to look up interesting recipes.

Now it does often frustrate me that, even though I make plans to cook or bake, they rarely come to fruition. However, like I said above, fretting over this means even more time and energy has been wasted.

This post was partly inspired by today’s #JusJoJan prompt, which is “intentional”. One thing I beat myself up over, is the fact that I didn’t blog yesterday and hardly wrote anything else, so in that sense who am I participating in #JusJoJan? There’s however no jotting police other than my own inner critic.

The Magnifying Glass #JusJoJan

Posted on by Astrid

When I was about eleven, my parents gifted me a magnifying glass for my birthday. It was a small hand-held magnifier that magnified everything eight times. That way, I was able to read large print for a little while longer, albeit slowly. That is until my vision deteriorated even further and, even with the magnifier, I could no longer read the large print atlas that I so loved. That was sad.

Now that I’m totally blind and couldn’t care less about that large print atlas, I do wish I’d kept the magnifying glass. Not for myself, but so that staff can more easily help me with my crafty pursuits. Many of my staff struggle with the detailed work involved in jewelry-making or with reading small print.

Then again, with the print, I could easily point my iPhone camera at it and have Seeing AI, Envision or another related app read the text for me. Intriguingly, yesterday I was chatting with a staff about learning to write and she asked me whether I could still write by hand. I asked her to hand me a pen and a piece of paper and wrote my first name onto it. Envision didn’t give me any feedback, but Seeing AI read everything except for the A. Of course, every letter except for the A was an inch tall. I am however pleased that it was legible by AI.

Not that it’s of any use in daily life. I mean, when I had to get a new passport a few months ago, it was decided that my handwriting isn’t readable enough for me to write my signature. That’s in part because my signature has always been a mess because I never quite understood the concept. However, my handwriting has definitely worsened over the years. I’m glad though that I got the comment on my passport that I’m unable to sign, because that way until I’m due to get a new one in ten years, no-one will ask me to try and then conclude that my signature looks nothing like the one on my passport. I had that problem when my wife and I were buying our house. Thankfully, the solicitor was able to ask to colleagues to sign in my place. Next time, official people will know beforehand thanks to the note on my passport.

This post was written in response to today’s prompt for #JusJoJan, which is “magnify”.

My Existence Is a Medical Miracle, Or Is It? #3TC

Posted on by Astrid

Hi everyone. I just stumbled across Today’s #3TC prompt. In response, carol anne shares about her premature birth. She was born three months prematurely in 1980 and considers herself to be a medical miracle.

I, often, believe the same. I mean, I was born just over three months prematurely, albeit six years later than carol anne. I weighed 850 grams or 1lb 14oz at birth. I spent three months in neonatal care.

When I was younger, I’d occasionally half-jokingly say that I’m a calculation mistake. The reason is the fact that I was born at sometime between 25 and 27 weeks gestation. The official paperwork says I was born at 26 weeks 4 days gestation, but this wasn’t always easy to determine back then. My mother claimed that, back in 1986, the line between actively keeping preemies alive and only treating them when they showed genuine strength, was at 26 weeks. I never cared to look up whether that’s true, but I do know that my doctor was adamant he was keeping me alive. In this sense, not a miracle.

In another respect though, I’m definitely a medical miracle, in that obviously I wouldn’t have survived without medical technology.

Yesterday, I read about the Dionne quintuplets, who were born in 1934 and the last one of whom had just passed away. Compared to them, I’m not a miracle at all. I’m glad about that, as they were on public display throughout their childhoods.

Like carol anne, I realize I didn’t just survive thanks to medical technology, despite the fact that’s what my doctor more or less said when my father questioned him whether I should be continuing to receive treatment after my brain bleed. I wouldn’t have survived had I not had the will in me to survive.

This is somewhat of an interesting realization in light of my suicide attempts over the years. In 2017, I survived two medication overdoses and, this past summer, I cut my wrist. Thankfully, I survived and, in the case of the incident this summer, without medical intervention. I realize this means I still somehow have a desire to stay alive.

The War on Time #3TC

Posted on by Astrid

Hi everyone on this cold Boxing Day. When I saw today’s #3TC prompt, I was reminded of a newspaper article my father shared with me in late 1999. It was called something like “The war on time” and was about all the ways people have fought over timekeeping and calendars over the centuries. It included, of course, the change from the Julian to Gegrorian calendar in 1582. I gathered from that article that our calendar’s still not fully aligned with the sun, so that it’s proposed that the year 4000 won’t be a leap year.

By the way, can you believe we’re closer to that year now than we are to the year Jesus was born? Interestingly, in that same article I read that Jesus wasn’t born in the year 0 (which I’m pretty sure no-one had a number for back then) or 1. He was probably born at least five or six years before then and most certainly not on Christmas day. It makes some sense to celebrate his birth around the end of the year though, but that would be closer to March rather than January. Then again, back in the day the months of January and February didn’t exist.

I used to love learning all about timekeeping and calendars. I could probably find a lot more info about it now, over 25 years later and with my having access to the Internet. But I can’t be bothered, honestly. I’d rather be writing random ramblings.

Now going to turn off my little electric heater. The heating in the care home broke down on Wednesday. I noticed I was freezing, but didn’t connect the dots, since it was supposed to be -5°C outside too. I spent the holidays with my wife and came back around 5PM this evening to a home that was still cold. The staff figured out the problem yesterday and it got fixed, but with the type of heating we have, it takes forever for the entire home to warm up, hence why I put on the heater.

Fear (Or Another Four-Letter F Word)

Posted on by Astrid

Fear. I’ve used this word as a starting point for my writings many times. The idea comes from Mari L. McCarthy’s journaling prompts. The idea is to pick a four-letter F word and write about it or use it as a prompt. Well, I’m doing that now, but I doubt I’m actually going to write about fear. I honestly don’t know what to write at this point and am not feeling anything in particular. That is, I guess I “should” be feeling something, but I don’t know what. Alexithymia. That’s what I believe this is called. Any emotional state for me is “good”, “bad” or “neutral” like right now. I don’t ever feel totally relaxed I believe. There’s always some level of stress or anxiety or fear in my body or mind.

My movement therapist tries to tell me that my body needs to get used to the feeling of being relaxed, because due to my early childhood trauma, it never learned to trust this feeling. That makes some sense, in that I almost always feel like I’m on high alert even when I’m half asleep. Is that even possible? And if so, isn’t it just normal? Do I even know what “normal” is, being that I’m autistic and otherwise neurodivergent, multiply-disabled and a trauma survivor? I doubt it. But if I’ve lived my life like this for nearly four decades, is there any way of changing it? I hope there is, because this feeling of always being on high alert is exhausting.

This is another freewrite I originally typed up in Google Keep, then finished here.

Brave Choices

Posted on by Astrid

A few weeks ago, I was in the mood for writing but didn’t know what about. I downloaded Google Keep on both my PC and iPhone and just started writing based on a prompt I saw on the See Jane Write website. I had never heard of this site. The prompts for the month of November were all two words long. The prompt I used was “brave choices”.

I doubt I’ve ever made a brave choice. Most of my major life choices were made out of fear or avoidance rather than courage. Either that or they were really other people’s choices I didn’t rebel against, or not well enough.

For example, my choice to live independently, wasn’t really my choice. I was pressured by my parents into saying this was my goal after completing independence training and, once everyone except for my parents agreed it wasn’t a realistic outcome, the pressure had increased to the point of being unavoidable.

Similarly, my choice to live with my wife, wasn’t really my choice either. She wanted it, but hadn’t realized all the complcating factors, like my substantial care needs. She had good intentions, mind you, thinking our love would conquer anything. It didn’t. Thankfully, I was able to make the choice to go into the care facility in Raalte before our relationship suffered irreparable damage.

If there’s one choice I made in my life that could be considered brave, it was this choice. My parents and former professionals would likely say this choice was made out of fear too. They might have been right. Maybe, if I’d been truly brave, I’d have been able to organize my own care whilst living with my wife. Then again, now that we live separately, neither of us wants to live together ever again.

I still wonder whether I could improve my life if I didn’t make decisions out of fear or avoidance anymore. I mean, the reason I rarely try out new skills of independence, is fear, namely the fear that my staff will always expect me to possess an ability I’ve shown once, as well as other related or even unrelated abilities. This fear isn’t unfounded, but it’s holding me back more than it should.

“One Chance!” Still Haunts Me…

Posted on by Astrid

Today, I’m feeling like writing but am uninspired, so I’ve been checking out a ton of writing prompts and the like. I’ve been fiddling with various notetaking apps too so that I can finally write snippets without them needing to be finished right away. I know I could do WordPress drafts, but I for whatever reason don’t like that. I’m now trying out Google Keep.

One of the writing prompt series was Halloween-themed and the question was about my most recent nightmare. I can’t remember and, thankfully, I rarely get vivid nightmares anymore. I do get snippets of conversations that replay in my dreams. “One chance!” yells the staff trying to force me to accept her new colleague. Those two words haunt me. I have had this experience before.

I recently learned that PTSD nightmares do not necessarily involve the details of your trauma. I don’t know whether the Redditor who said this, based this idea on the DSM, as I’m fairly certain that in the criteria for PTSD, nightmares do need to be trauma-specific except in young children. However, even just reading that someone else experienced vivid dreams that aren’t necessarily connected directly to their trauma, feels validating.

When I was living on my own, I experienced extremely vivid dreams almost nightly and, even when those dreams weren’t directly connected to my trauma, they were disturbing nonetheless.

In a somewhat similar fashion, the staff’s comment haunting me, in itself, might sound rather innoceous. I mean, I know that it doesn’t necessarily take physical or sexual abuse for someone to be traumatized (again, contrary to what the DSM says), but if this comment were a one-off experience rather than a symptom of the rather traumatizing power dynamics involved in institutional care settings, it wouldn’t have stuck with me. Or it might have, but it wouldn’t have had the negative connotation it has now.

There’s a reason secondary triggers are a thing. I often feel shame about the numbers of triggers I have. Usually though, when the context isn’t in itself distressing, I’m able to point out that something is a trigger for me and move on.

Not with this one, but then again it was actually a boundary that was crossed. If this had happened with three people who aren’t professionally related, it’d have been considered a form of harassment. I still struggle with this concept: that what is considered “normal” in a care setting, would be considered a violation anywhere else.

Quality of Care

Posted on by Astrid

Hi everyone. Today, I filled out a survey by the Dutch disabled people’s lobby group Ieder(in) on the quality of my care and its impact on my quality of life. I filled out the same questionnaire in 2023, a month or so before moving to my current home. Back then, I rated my quality of care 2 out of 10 and ticked almost every box on incidents I’d been involved in (as a target).

Today, I could think of only one incident box to tick: incidents due to lack of oversight, such as elopement. I mean, I myself have been aggressive towards staff, but that’s not what was meant. I also rated my quality of care 5 out of 10. That’s still not good enough, but it’s a lot better than it was back at the intensive support home. As my wife jokingly said, maybe in two years I’ll rate it 8 out of 10.

That’s not even entirely impossible, because as I explained in the field for additional comments, the bureaucratic framework for better care exists. By this I mean that I have a budget for one-on-one care that’s sufficient and that on most days, the home isn’t too short-staffed to provide me most of the care I need. What still makes me judge my quality of care as insufficient, is the fact that the way my care is organized in practice, doesn’t work for me.

There was a question about whether you have familiar staff or not. Back in 2023, I think I answered that I almost always had unfamiliar staff. Now I can’t remember which box I checked, but I did put into the comment boxes that the team including so-called regular temp workers is so large and new staff are oriented so chaotically that I essentially deal with a lot of near-strangers.

Speaking of which, my support coordinator thankfully agreed to another chance at orienting the new staff I mentioned on Saturday. Today, she attended my evening activity and we just chatted in order to get to know one another. I still feel some discomfort around letting her be oriented to my morning routine tomorrow, but agreed to it anyway. The fact that the staff even gave me a choice, shows improvement.

I must say I’m less willing to accept awful care now than I was two years ago. After all, let’s face it, almost no-one in the outside world accepts a random stranger into their house who refuses to leave and demands to do personal care tasks for them. I was forced to do exactly that until a year ago (and on Thursday, but thankfully my support coordinator changed that). In that sense, I wish there were a question on the survey asking me how my care compares to two years ago. I mean, in early 2023 I wrote a pretty cynical post about a day with optimal care. I reread it just now, thinking I’d claimed my care was actually optimal back then. I fully intended to contrast my revised idea of what constitutes “optimal care” now with my screwed view back then. Thankfully, my perception wasn’t as screwed in 2023 as I thought it was. In fact, I said pretty much the exact same thing I said on the questionnaire today: the framework is okay, but the practical reality isn’t. I do feel my reality is better though than it was then.