Don’t Get Me Started… #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “Don’t get me started”. Oh my, don’t get me started… or I’ll rant forever.

I have this habit of ranting about my care to whoever will listen. Not even about my current care, but about my care at the intensive support home. This afternoon, I was telling a staff who’s just quit smoking that, now that institution grounds are officially a non-smoking area, I no longer permit staff cigarette breaks during my activities.

I say that grounds are “officially” a non-smoking area because, in reality, no-one listens and even the higher-ups smoke on grounds.

I am a non-smoker and yet I understand the fact that clients want to smoke in the yard. Who are the higher-ups, whether they abide by the rules or not, to prohibit smoking in our own home? Well, outside of it, of course, because yes the non-smokers have a right to a smoke-free home.

Staff, however, are usually the ones who smoke the most and I don’t fully understand that. I mean, yes, it’s an addiction, but it’s also a habit. And, besides it being just plain yuck, staff are taking extra breaks in order to meet their “needs”.

Back to my not permitting staff to take cigarette breaks anymore. Every staff here understands, even the hardcore smokers, but back at the intensive support home, not so. I told this staff about a staff doing my morning activity time slot. At the start of it, she said that it’s long, right? It’s ninety minutes. “Can I have a cigarette?” I told her to stand on my balcony and discard her cig safely. Half an hour later, I was doing a clay project. “You’re now busy with the clay anyway. Can I smoke again?” I reluctantly let her use my balcony again. Half an hour later still, an hour into my activity, she was like “I’m going to need to discuss something with a coworker”. And off she was. When she came back ten minutes later, I told her I didn’t like her essentially taking three breaks during a ninety-minute support moment. “But you don’t have one-on-one,” she ranted, saying that with my “just having extra care” this means she could leave me alone whenever she needed to. And besides, she didn’t need to offer up an explanation to the client for her decisions. Well guess what? Yes, staff do need to justify their decisions to me when these affect my care.

And don’t get me started on the difference or lack thereof between one-on-one and extra care. They’re both just sums of money the institution receives for a client. Yes, some clients have more one-on-one hours or extra care hours or whatever than I do, some even having 24-hour one-on-one. However, these sums of money are based on average amounts of care a client needs. If a client has 24/7 one-on-one (which none of the clients at that home had), it means they on average need one staff with them all the time, but sometimes two and sometimes briefly none. I at the time had seven hours of extra care/one-on-one support a day and my support coordinator claimed that my day schedule at the time spanned nine hours. There are various reasons why firstly this wasn’t true and secondly it doesn’t mean I had two hours of support that wasn’t being paid for, but don’t get me started on that…

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”.

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”.

Mindfulness As an Activity #JusJoJan

Posted on by Astrid

Hi everyone. Happy New Year to you all! I’m happy to read Linda has given #JusJoJan another go and I’m going to try to participate again. Today’s prompt is “mindfulness”, which really speaks to me.

When I first learned about mindfulness, I was in dialectical behavior therapy for my emotion regulation issues. All I remember of it at the time were rather abstract concepts like imagining your thoughts are like clouds in the sky. I couldn’t put these concepts into practice at all. I mean, observing my thoughts felt so completely alien to me. Same for mindful breathing exercises. I’ve tried them, a zillion times, mind you, but I always end up being distracted.

Then, a few weeks ago, I was listening to a podcast episode of one of the ADHD podcasts I listen to occasionally. Not that I have a diagnosis of ADHD, but I relate to many of its traits. The episode was about seven different kinds of rest. In it, the podcaster described seven different ways of rest that we all need, including physical rest, mental rest, spiritual rest, etc. None of these in her particular experience involved napping. Also, by doing just one activity, the podcaster said you could be resting in more than one way.

For example, she mentioned going on a walk and, while on her walk, being conscious of every red thing she saw. This is mindfulness in a totally different respect than imagining your thoughts are clouds. It totally spoke to me!

Now of course I’m totally blind so counting or naming red objects doesn’t work for me. But I’m sure the same principle can be applied to sounds or any of the other senses. I’m going to give it a try when I next go on a walk.