Share Our Life (March 2025): An Average Day

Posted on by Astrid

Hi everyone! Today I’m joining Share Our Life, a linky with a monthly theme. This month, it’s to describe an average day in your life. Unfortunately, taking pictures is not part of my average day. I really want to change that, but for now, just text will have to do. I didn’t pick a specific day to describe.

I usually wake up at around 7:30AM when the staff are helping the resident in the room next to me with her morning routine. Since my first support moment isn’t until 8:15AM, I usually have a little snooze.

8:15AM is when my staff come to wake me up and help me with my morning routine. I hate showering, so don’t do it each day. I get dressed and have breakfast – usually quark with muesli and blueberries. My morning routine, including breakfast, can take up to an hour.

At 9:15AM, I’ll usually lie back in bed for a little slumber while listening to music on my music pillow.

My first activity time slot starts at 10AM. I sometimes extend my lie-in until 10:15 or 10:30AM. I start my activity time slot with coffee and then I’ll usually either play a card or dice game or go for a walk.

By 11:30AM, my staff leave to prepare my lunch. I usually eat two slices of bread with peanut butter and a cracker with speculoos (Biscoff). I also consume a serving of veg with my lunch. My lunchtime is at noon.

By 12:15PM, I’m done eating and will be on my phone for a bit, reading the news or texting or calling my spouse, who is then usually taking a break.

My two-hour activity time slot starts at 12:45PM. This time slot was originally intended for more time-consuming activities such as a bigger polymer clay project, going out to the nearby town, etc. Occasionally, I’ll use this time slot for cooking dinner for myself and my fellow residents. Often though, I can be found walking grounds with my staff. I’ll end my activity time slot with coffee, although I might also have a cuppa by 1:45PM already.

My staff go into handover at 2:45PM and I’ll most days use up the 45 minutes until my next supported moment with some online activities. By the way, handover doesn’t take 45 minutes, but it’s not like I need one-on-one all of the time.

During my 3:30PM activity time slot, which lasts an hour, I commonly play a dice game. I sometimes also go for another walk. I have unsupported time again for 30 minutes after this while my staff help the other clients with their dinner. My dinner is at 5PM. I am a rather fast eater, so am frequently finished by 5:15PM. My staff have their break at 5:30PM.

At 6PM, my final activity moment for the day starts. I have an activity list, from which I can choose what we’re going to do. What we’ll do, is too often related to the staff supporting me. I really want to change this, but it’s hard.

I’ll have my final coffee at 7PM and then have unsupported time again until it’s time for my late evening meds at 8PM. I’ll most commonly use this time and the rest of the evening for blog-related activities.

Like I’ve shared many times, I usually have Dubbelfrisss in apple-peach flavor with my evening meds. I also will eat a serving of fruit. Then I’ll be told which staff will be in the home the next day. Some days, I’ll hang out in the living room for some time then, while at other times, like today, I’ll head straight back to my room and go online. I used to be phoning my spouse a lot late in the evening too, but now we’ll often talk at other times.

At 8:45PM, I’ll sometimes have a little snack. Then I’ll go online again until my staff come to supervise me brushing my teeth and to close my door to the yard at 9:30PM. After that, the staff will leave the home and I’m supposed to rely on the night staff in the main institution building for support. My fellow residents all go to bed before then, but I’m allowed to stay up. I’m a true night owl, so most days it’ll have been past 11PM before I’m in bed.

All this sounds incredibly boring and unproductive. I really want to put my unsupported time to better use, because currently most of the time I just end up scrolling.

Spoon Theory

Posted on by Astrid

Hi everyone! I’m back after more than a week of not touching the blog. I feel horrible for having neglected something I really love over the past few years, ie. my blog. However, I just don’t seem to have the spoons for it.

Spoons? This week’s prompt for #SoCS is “spoonful”. I immediately thought of spoon theory.

Spoon theory is a way of describing life with a chronic illness or disability that limits someone’s energy levels when compared to non-disabled people’s energy levels. I haven’t delved deep into it, but the way I understand it, each person has a set number of “spoons” or spoonfuls of energy. However, for a disabled or chronically ill person, daily activities take up more spoons than they would for someone who is currently healthy and non-disabled.

I was thinking of this when, after a dispute with one of my staff over temp workers, I wanted a way to explain how hard it is for me to deal with a temp worker, especially when they haven’t been told what to do with/for me, because “she can explain everything really well”.

For example, let’s say we each have ten spoonfuls of energy a day. The actual number doesn’t matter, but the point is it’s the same for someone who isn’t disabled, like the staff, as it is for me. For a non-disabled staff, their first spoonful of energy of the day might go to showering. For me, it goes to processing the staff’s greeting in the morning and figuring out who is going to help me with my morning routine. Then, if it’s a temp worker, the next spoon goes to introducing myself and figuring out whether I “know” them already (as some of them claim I should “know” them when they’ve been my staff just once many months ago). Then, another spoon goes to thinking of whether it’s a day I’m supposed to take a shower (which I hate, so doing it everyday to skip this step isn’t really an option) or just do a quick wash. Showering costs me at least two additional spoons, often more. Then it’s not even half an hour into my morning routine and I’ve already spent half my spoons for the day. I accept this reality, but additional spoons go into explaining my routine to temp workers even though a lot of it is in my day schedule. When a temp worker (or even a regular staff who rarely works mornings) helps me with my morning routine, this usually means I’m overloaded by the time I’ve finished breakfast.

And just so you know, getting up on my own and doing my entire morning routine independently, would mean I’d spent all of my spoons by the time I had gotten dressed or even earlier. I tried this when at the intensive support home, where the reasoning was that if you can do something physically, it doesn’t matter how much energy it costs. I was then told I was being “negative” for going into bed right after my shower.

For your information, spoon shortage does not just result in physical exhaustion. For me, it often results in mental overload, which I may show as a meltdown. Then people reason that melting down costs energy too so why am I “choosing” to spend my spoons on that? The thing is, meltdowns aren’t a choice.

I honestly feel that staff in general, not just the staff who refuses to support me after said dispute, need to be more aware of spoon theory. Then they’d understand better why I can walk for 45 minutes but not do my personal care completely independently. Hint: walking is just one action for me (putting one foot in front of the other). Oh, that’s two because I have two feet. However, my point is that walking isn’t nearly as complex a task as personal care is.

That being said, I feel that spoon theory would not just help me, but the other clients too. There’s a client here who “takes advantage” of the others by not doing any chores, according to the same staff who tells me I can explain everything perfectly fine so the temp worker doesn’t need introducing. She’s all for fairness and equality and everyone being the same. Newsflash: we aren’t. And who knows how much energy goes into this client’s everyday activities?

Okay, this post goes into the “Awareness” category because it’s not really a ramble. Well, it is, but it is also a post to raise awareness. I haven’t added the “#SoCS” ending to my post title because, well, not sure why but it didn’t feel appropriate. I hope that’s okay.

Daily Habits I Already Do That Improve My Quality of Life

Posted on by Astrid
Daily writing prompt
What daily habit do you do that improves your quality of life?
View all responses

So many times, we think about the habits we could add to our daily routine to improve our quality of life. I at least do and then the only thing I do is make a list of them, but I don’t actually add most habits to my daily routine. I must admit, there’s very little I do literally everyday. This, however, is a nice reminder to look at the tiny things I do (almost) daily that improve my life.

  1. Get up at a reasonable time. I used to be a big one for lie-ins until late morning or early afternoon. Now though, I always get up between 8AM and 8:30AM. Yes, also on weekends. I sometimes go back to bed after breakfast for about half an hour, but I consider that my chill moment rather than me needing the extra sleep.
  2. Eat breakfast. I sometimes skip lunch or dinner, but I never skip breakfast. This hasn’t always been the case. Like, when I was a teen usually the first thing I’d pop into my mouth would be a candy bar or two from the school vending machine. Even when in the mental hospital, I’d often not wake up until mid-morning or later and would skip breakfast.
  3. Brush my teeth. This is another one that hasn’t always been this way. Like, in the mental hospital I’d skip toothbrushing more often than I’d actually do it. The staff thought that I just didn’t want to brush my teeth and,, since I had a borderline personality disorder diagnosis, this was considered “my choice”. However, I struggled with the feel of the manual toothbrush, the taste of toothpaste and I’d often simply forget to brush my teeth.

    Now, I get reminded to brush my teeth and my staff supervise me. Though I haven’t found a solution to the toothpaste issue, using an electric toothbrush helps a lot already.
  4. Go for a walk. Or several. This is something I don’t literally do everyday, but 99% of the time, I go for at least one longer walk.
  5. Call or text my spouse. Social interaction helps improve quality of life too, so I include this one. I sometimes am so busy with my morning activity that I don’t text my spouse until early afternoon, but not a day goes by when we don’t interact.

Looking at this list, most of these habits I do in the morning. That’s so interesting, since I consider myself a night person. Things I do in the evening that improve my life, however, aren’t usually literally daily habits.

My Current Night-Time Routine

Posted on by Astrid

Hi everyone. I totally forgot about Writer’s Workshop this week, even though there are several prompts that appeal to me. I might just write another post tomorrow about another prompt, but tonight, I’m talking about my bedtime routine. Oh wait, I wrote a post about that already in 2022. Reading it makes me miss Raalte so much… even my night-time routine was better. Oh well, here’s my current night-time routine.

My night-time routine starts at 8PM with my getting into my nightwear. Even though this is early, I’m the last of my care home to get dressed into my nightwear. I also get my last round of meds at 8PM, which thankfully doesn’t include sleeping pills. The one time I took a sleeping pill while here, I had to take it at 9PM, which is still very early for me.

At 8:45PM, I usually get a small snack or a bit of fruit, because like I said I go to bed late and I’d feel hungry if my last food of the day (except for a biscuit at evening coffee time) was dinner at 5PM. Then at 9:30PM I brush my teeth, my staff lock my door that leads to the backyard and turn off my lights. Since I’m blind, I can function without light and, if the staff don’t turn off the light for me, I might forget or be bothered by the light if it’s set really bright, and I don’t know how the switch works.

Once I’m ready for bed, I turn off my computer and check the battery status of my iPhone. I sometimes forget to charge my Apple Watch before bedtime and then I put it on the charger for a few minutes to at least get a bit of power to last it through the night. Depending on the battery status of my iPhone and my mood, I might turn on relaxing music either for an hour or throughout the night.

I take off my slippers and usually my socks (except in the freezing depth of winter, then I leave my socks on). I have a weighted blanket that I lie under year-round. And no, it isn’t exceptionally hot in summer. I also fetch two specific stuffed animals: the lemur will have its tail across my stomach and the dolphin I will hold in my arms. I have about five more soft toys in my bed, but these usually just lie around my pillow.

I can sleep in all kinds of positions depending on my mood, the temperature in my room, etc. I usually have the headboard of my bed turned up pretty high. When I can’t sleep, I also turn the other end up. Yes, I know, it sounds weird. I am so grateful for my adjustable bed though. It isn’t a given, since just after I’d gotten this one in like 2021, the higher-ups in my care agency decided that people who weren’t severely physically disabled, didn’t qualify for adjustable beds. They didn’t take away mine though, thank goodness.

It’s All a Blur

Posted on by Astrid

It’s all a blur, this life of mine. Moments, days, weeks, months – maybe soon years, who knows? – roll into each other. I don’t like it one bit, sorry not sorry.

I may not be able to fully lay the blame on my current care home with its chaotic and yet oh so boring routine and no day activities whatsoever. I might be able to create my own routine that would somehow differentiate between mornings and evenings, weekdays and weekends, summer and winter. If only I knew how.

This post was written for this week’s Six Sentence Stories link-up, for which the prompt word is “blur”.

My Bedtime Routine

Posted on by Astrid

Hi everyone. I’m feeling a little stressed out and, as it is past 9PM as I’m starting to write this post, I thought I’d share about my bedtime routine in order to get myself comfy and relaxed for bed.

Usually, the staff come by my room at around 9:45PM to help me get ready for bed, like get into my pajamas and brush my teeth. I usually leave my socks on, as I’ll often want to stay up a little longer. The evening shift here at my current care home ends at 10:30PM, so the staff usually say goodbye then too and turn off my light. In the care home I may move to on October 5, the evening shift ends at 10PM, so I may want to move my bedtime back a little.

I can go into bed by myself, but sometimes I want the staff to stand by while I go into bed. I will pull off my socks. Then, I’ll grab my iPhone if it’s sufficiently charged and select a Spotify playlist to play on my music pillow. The music pillow is connected to my iPhone via its lightning port (and a lightning-to-audio converter). I love the Harp Lullabies playlist, the Guitar Lullabies playlist or some albums by Robbins Island Music Group or Dan Gibson’s Solitudes. I most commonly set the sleep timer for an hour.

I sometimes will have an essential oil blend in my diffuser too. Some aren’t very suited to sleeping, but I know of a number of relaxing essential oil blends, four of which I shared before.

I have a weighted blanket, which I pull up over me almost till my chin. I also will grab ahold of one of my soft toys. Sometimes, I’ll lay the tail of the lemur over my chest, while at other times, I’ll hold the dolphin or unicorn.

Sometimes, I need to shift my sleeping position. I can sleep in every position except on my right side, but my preference will vary. Once I’ve found a comfortable position, I’ll likely doze off pretty quickly.

The night staff does come by at around 11:30PM to check on me. This is mostly to prevent me sitting up all night without anyone noticing. I can also press the call button if I can’t sleep, but of course other than try to comfort me, there is little the night staff can do. That being said, I sleep a lot better now that I have the weighted blanket, music pillow and essential oil diffuser than before I had all these.

loopyloulaura

Rituals and Routines Surrounding My Creative Work #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to day 18 and my letter R post in the #AtoZChallenge. Today, I’m going to talk about rituals and routines surrounding my creative process.

I don’t really have any particular rituals, in the sense that I do certain ritualistic things related to my creativity. Maybe it would help me if I did, because I sometimes struggle to get started with my creativity. Maybe having a creative ritual would help me get the “signal” that I’ll be crafting. Then again, that’d be similar to having a creative routine.

I do have certain specific routines where it comes to my polymer clay. First, I set up my work space. Usually, my staff help me roll out my no-stick mat and set up my pasta machine. They also retrieve my ceramic tile and the pencil case with my cutting tools in it from the locked kitchen cabinet. I have my clay in a large storage box, which I usually put onto my bed before starting to work. Most of the time, if I need just one color at a time, I get them out of the box one by one too and return them as soon as I no longer need them.

I usually have the staff pull my hair into a ponytail before I start to work too, because I don’t want to get hair into my polymer clay. When I’m wearing a fleece vest, I remove that too. I do usually wear black T-shirts, even though I’ve heard lint from that can get into your polymer clay too. I however don’t have any white shirts.

I always make sure to wash my hands before working with polymer clay and inbetween colors. A notable exception is when I’ll be using black for a figure’s eyes, because firstly I’ll just need a tiny bit of black then and secondly black will hardly be contaminated by other colors.

When I’m done working with polymer clay, I also have a routine that includes cleaning every tool I’ve used, including the ceramic tile, the pasta machine, any cookie cutters, my knives, etc. I clean most things using baby wipes, but this does mean I need to dry most of my tools (especially my pasta machine!) too. Most pros disassemble the pasta machine for cleaning, but I have no idea how to do that or how to put it back together.

I have no set time for polymer clay. For other creative activities, such as blogging, I do usually have set times, because I need to be alone when doing them. My most common time to write a blog post is after 8PM in the evening.

Sunday Ramble: Habits and Routines

Posted on by Astrid

Hello all on this beautiful Easter Sunday! Today, I’m joining the Sunday Ramble, for which the topic this week is habits and routines. Here are Amy’s questions.

1. Do you have a daily routine that you are used to, or do you just go with the flow of the new day?
I usually get up and go to bed around the same time. I also eat breakfast, lunch and dinner at the same time most days. However, with respect to the activities I do inbetween, I usually go with the flow. After all, I just don’t always fancy doing the same things each day, don’t have the same level of energy, etc.

2. Do you do anything in your life habitually that you wish you could stop?
I guess I have quite a few bad habits. I’m learning not to overeat, but I still eat much faster than I’d like.

I also bite my nails. I tried to stop when I first started working with polymer clay, thinking that I could ingest polymer clay that got stuck under my nails by biting my nails. Unfortunately, I couldn’t stop.

I also twirl my hair, which my autism diagnosing psychologist once told me was a “serious social handicap”. Well, I was just beginning to recover from a psychiatric crisis at the time, so I couldn’t care less.

3. If habit was the acronym H.A.B.I.T, what would it be short for?
Helpful Actions Bring Infinite Thankfulness.
That’s a way of turning HABIT into something good!

4. Are we born with our bad habits? Or do we acquire them from the environment surrounding us?
I think, like most of our traits, it’s a combination of both. We are born with a predisposition to, for example, nervousness, addiction, etc. However, the exact nature of our bad habits and whether they make it into actual compulsions/addictions/etc. or not, is largely determined by our environment.

5. Are you a night owl, early bird, or something else when it comes to sleeping routines?
I am naturally more of a night owl, but I also need a lot of sleep. I’ve gotten used to going to bed at around 10:30PM and getting up at 8:30AM. That probably makes me something in between.

My Daily Routine (Or Lack Thereof)

Posted on by Astrid

And still it’s incredibly hot here! It did start to rain last night, but it’s not cooled down much in my room. It’s already past 9PM here and I don’t feel like writing. Or doing anything else. But I bet I cannot sleep either. Therefore, I blog.

Today’s #FDDA prompt is “your daily routine”. My daily what, I ask?

Unlike many other autistics, I am not one for clear routines. In the mental hospital, I would just lie around and do whatever, just like I see many people do now during the COVID-19 lockdown. I didn’t have a set time I’d go to bed or get up. I didn’t have a daily personal hygiene routine, as I hated most personal care tasks and there was no-one to say I needed to do them. Well, there was the staff, of course, but it was their view that I was responsible enough to decide these things for myself.

Once I lived with my husband, I did go to a day center each weekday morning. This meant I did have to get up at the same time each day. I did have an okay morning routine back then, as my husband had instilled the importance of personal care into me.

Then I went into long-term care. Pre-COVID, I still had somewhat of a routine, as I was expected to go to the day center each weekday (except for every other Friday). I tried to maintain such a routine when the day center closed, but I cannot seem to really.

Still, I have some set activities I do each day. I go for a walk in the morning and one in the afternoon too. We also have coffee, lunch and dinner at the same time each day. Now that it’s hot though, I don’t go for walks and often skip coffee break too.

These last few weeks, the days have truly been merging into each other like time didn’t really matter. I do still try to blog most days, usually around the same time.

Sometimes, I wish I had more of a strict daily routine. That’s not really possible though and I’m not sure it’s really what would be best for me.

What about you? Do you thrive on routine?