Today’s Accomplishments (June 20, 2025)

Hi everyone. I’m struggling with having a zillion vague ideas of what to write in my mind but not being able to get started on actually typing any of them down. This makes me feel like a failure as a writer. To counter this feeling (and to actually write something, anything…), I’m doing a list of things I did accomplish today. Here goes.

1. Did my morning ADLs. I actually needed to shower today, but had showered and washed my hair yesterday so I did a quick wash this morning. After all, I was still pretty tired when waking up. I’m content with this.

2. Went to physical therapy. I had what I might hope was my last dry needling session on my right leg. It hurt when I was being treated, but the pain has been manageable for most of the day. I probably have to thank paracetamol for that, as I now have to take that four times daily for an unrelated ache.

3. Went on two 1.8km walks. After the dry needling treatment, I’m not supposed to walk long distances for the first 24 hours, but this felt okay.

4. Experimented with seed bead stringing. I had ordered seed beads in four colors last week (the parcel I moaned about not having been delivered last week). I had also ordered a beading needle, which I expected to be sharp so I was saying that I probably needed to protect my fingers. Then again, if I do so, I can no longer feel where the needle is going. Turns out the beading needle isn’t sharp at all. And guess what? I actually succeeded at stringing the seed beads onto the wire. Granted, I haven’t tried even the most basic beading stitch yet, as I couldn’t follow the step-by-step instructions I found online and didn’t have the time to watch a video with my staff. I’ll give it a try soon though.

5. Brushed my teeth. This isn’t such a big achievement to most, but for a long while when in the psych hospital, I struggled with this. For this reason, I’m mentioning it anyway.

Today’s Accomplishments (February 15, 2025)

Hi everyone. Over the past few weeks, all I seem to have done is hang out on social media, talk randomly with my staff and lie in bed. That isn’t entirely true, since I’m still managing to close all of my activity rings on my Apple Watch everyday this month. However, this month so far feels horribly unproductive. I think in part this may be my mindset, so to turn the tide, today I’m once again listing my accomplishments for the day.

1. Showered even though it wasn’t one of my designated shower days. Like I said in my post on spoon theory, showering costs me a lot of energy, so it’s actually quite an accomplishment that I did it on a day I wasn’t required to.

2. Went for an hour-long walk. This isn’t a huge achievement, as I walk most days, but still, I shouldn’t downplay it either.

3. Completed the friends quest with my partner on Duolingo with me having done only slightly less than my spouse. The quest was to complete 50 lessons with 90% accuracy. The accuracy isn’t the problem for me, as I’m doing intermediate English and early B2 is still quite easy. However, over the past few weeks I’d only done a lesson or two a day.

4. Created a “bull in a china shop”, as I call them, out of polymer clay. It’s an elephant that sits on top of a cup. I had been planning to make it for a few days, but always procrastinated on it even though it turned out I could finish the thing in half an hour. No picture yet, as it still needs to have its eyes painted.

5. Wrote a few thoughtful (if I can say so myself) comments on Reddit. I go there everyday now that Facebook is no longer safe, but I try to actually have something meaningful to say too.

6. Wrote this blog post. Does that count? Yes, if I say so, it does and it’s probably the greatest achievement of the day given I had hardly come on WP over the past few weeks.

Spoon Theory

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 For a More Meaningful Life

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.

Ways In Which I Was Not a Typical Teenager

Hi everyone. Today’s Word of the Day Challenge is “Teenager”. This reminded me of a question a fellow blogger, I think it was Emilia from My Inner MishMash, once asked: in what ways we were not like a typical teenager.

This post could have been a lot shorter had I had to answer in which ways I was like a typical teenager. After all, I wasn’t like a typical teenager in any way. That doesn’t mean I didn’t try. Like, I pretended to be a Backstreet Boys fan even though I knew next to nothing about them and had hardly heard their music. I also pretended to have crushes on boys (and girls) even though I hardly knew them and quite frankly didn’t understand attraction.

I tried going to school proms the first few times in high school, but didn’t fit in at all. I also tried wearing what other girls my age wore. My mother asked my younger sister for advice when clothes shopping for me. However, somehow I always missed the mark. I couldn’t wear makeup nor was I interested in it.

With respect to interests, I have no idea what teenagers in the early 2000s were into. I did read what I assume was somewhat popular Dutch YA fiction, but had no friends so couldn’t discuss it with them.

With respect to socially appropriate behaviors, I was way off. Still am. I didn’t know how to take care of my personal hygiene, for example. I remember my sister gave me a deodorant as a birthday present when I turned fourteen, but I didn’t get the hint. Months later, when my teacher reminded me about hygiene because my classmates had been complaining, I still had no clue what an appropriate bathing and personal hygiene routine was.

Back in the day, most teenagers drank alcohol. I tried wine at home when I was fifteen (the legal age for alcohol consumption was sixteen at the time). When I was sixteen, I went out to a pub with a few classmates. I had two beers, the most alcohol I’ve ever had in a single sitting. Later that evening, a guy we were with from another school offered me and another girl in my class some pot, which we accepted. Since I hadn’t smoked beyond a whiff here and there, I probably didn’t inhale anything, as the stuff didn’t have any effect on me whatsoever.

Where it comes to Internet and social media usage, I was probably a rather naive teenager. I wrote posts like this one about my current rather than past life in my public online diary using my full name (I do think it’s still on this blog somewhere too). Not only did I not take my own privacy seriously, but I used teachers’ and other people’s full names when writing about them too. I’m so happy none have ever made a serious problem out of it and I also haven’t been the victim of online predators. That being said, I wasn’t one to make obscene comments, like some other people my age did back in the day using their full name. I would also panic when I accidentally clicked on something that might be unsuitable for minors.

In summary, in many ways, I was like a child in a teenage body. I still often feel like a child in an adult body, truthfully.

The Wednesday HodgePodge (June 22, 2022)

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here are Joyce’s questions for this week.

1. Something you learned from your father?
Well, I shared about this on Sunday already: my father mainly taught me academic skills. He also was the one who taught me the limited personal hygiene skills I did learn as a child. There’s a story he used to tell me about having to teach some personal care to my mother when she moved in with him at age 22. In this sense, I shouldn’t really feel embarrassed at the fact that my husband had to teach me to use shower gel when I was in my mid-twenties.

2. Do you like onions? Raw or cooked? How about onion rings? What’s something you love to eat that calls for onions?
Onions, mmm, love ’em! Raw is nice, cooked even better. I love onion rings too! A recipe I love and used to cook when I still cooked independently which calls for lots of onions (and garlic!), is macaroni with mushrooms, bell peppers, onions of course and I’d use a mushroom soup that you’d need to add water to in order to turn it into a soup as the sauce. Sadly, that brand of soup eventually added ham to its mushroom soup, which I don’t care for. When I cooked for just myself, I’d also add chicken, but when I’d cook with my husband, we’d skip that as he was a vegetarian back then.

3. It’s officially summer (in the Northern hemisphere)…your favorite and least favorite things about the season?
My favorite thing is, of course, my birthday at the end of June (in five days’ time!). Other than that, I love the longer daylight. My least favorite thing are mosquitoes and other summertime bugs such as the oak processionary.

4. When you think about the summers of your childhood what are two or three things that come to mind?
Vacationing at Vlieland, one of the Wadden Islands. For the first several years that we went there, I loved it. I remember building treehouses with my holiday friends one year when I was eight. The next year, we didn’t return. And not for another several years. When we returned to Vlieland again the summer I was twelve, I didn’t like it nearly as much, because I’d by then lost most of my vision. Besides, kids my age no longer wanted to build treehouses.

5. A hot mess, the heat of the moment, beat the heat, if you can’t stand the heat, catch heat, in a dead heat…choose a ‘hot ‘phrase and tell us how it applies to your life right now.
A hot mess… that’s my country at this point!
Today, two protests took place in the Netherlands: one by farmers against the government’s nitrogen crisis-related policies (or plans, really, as no real policies have yet been implemented), which will likely cause some farmers to need to stop business; the other by Extinction Rebellion, a group of climate activists, also against the government but with the opposite aim. The farmers caused huge traffic jams on various highways because they were coming to the protest in their farming vehicles. The climate activists gained unlawful entrance to the Tax Service main office in The Hague. The police claimed to be powerless against the farmers, but arrested 22 climate activists.

Thankfully, neither protest is impacting me personally, but all the bad news does worry me.

6. Insert your own random thought here.
I was going to ramble on above about the rapid rise in COVID cases here, but I guess that needs its own heading. Last night I had a slight headache and, since that was how my COVID started last February, I worried that I was going to get it again exactly four months after I’d initially contracted the virus. That in turn would mean canceling my husband’s visit today, my birthday celebrations this weekend and my nurse practitioner’s appt on Monday, which, though Monday is my birthday, I decided to go on with after all. Thankfully, I have absolutely no symptoms indicative of the virus now. Please pray I won’t get sick anytime soon.

Life Skills I Struggle With As a Multiply-Disabled Person

Earlier today, Ann Hickman wrote an interesting list of ten life skills she is teaching her autistic teenager. As a teen, I missed out on most of these lessons she mentioned, leading to a big gap in my skills as well as my awareness of them.

Of course, lack of education isn’t the only reason autistics and otherwise disabled people may struggle with life skills. I struggle with many of them due to lack of energy, executive functioning issues and other things.

Today, I am sharing life skills I struggle with and why.

1. Personal hygiene. I remember vividly my sister gave me a deodorant for my fourteenth birthday as a hint. I didn’t get it. I wasn’t taught about hygiene much beyond childhood, but even if I were, I didn’t grasp the concept.

Similarly, because we had a bath at my parents’ house, I didn’t learn to properly shower. I didn’t know until a few years back that you’re supposed to use body wash when showering each time.

Other personal care tasks, I simply cannot do due to my physical limitations. I cannot clip my nails, for instance. I know some other blind people (presumably without physical disabilities) can, but other blind people I know go to the pedicurist for this.

2. Meal preparation. While in the training home, I tried for weeks to learn to put peanut butter or jelly on my bread without success. My mother can’t do it blindfolded either. My father can, but he assembles all his supplies around him in a very structured manner.

To be honest, I never had to prepare my breakfast or lunch before going into the training home, as we didn’t eat breakfast at my parents’ home and my lunch was always packaged by my mother (or I’d eat a sausage roll at the cafeteria).

There are probably ways I could prepare my own meals if I really need to. I mean, when living on my own, I just ate plain bread without toppings. However, I prefer my staff prepare it for me.

3. Cleaning. This is a difficult task for most blind people, but it can be done. I can dust my desk and table with minimal help if I’m reminded to do so. However, I can’t vacuum or mop the floors. I learned both, but with each house having a different way it’s set up, it’s very hard to find my way around it with a mop or vacuum cleaner.

What I struggle with most with respect to cleaning, is remembering how often each task needs to be done and actually organizing them. For example, in the training home, I’d clean the top of the doors each week despite no-one ever touching them. On the other hand, I’d procrastinate about changing my bed sheets, sometimes leaving them on for months.

4. Getting around. Ann mentions navigation for a reason: regardless of high-tech solutions to help people navigate, they still need to learn to use maps or to use public transportation. For me as a blind person, mobility was always more important, as it additionally involved safe white cane travel. I never mastered this, even with seven years of mobility training in special education and many more lessons once out of special ed. I only recently learned that more blind, neurodivergent people struggle with white cane usage.

Currently, I can for the most part move around inside the care home by myself, but I cannot at all get around outside without a sighted guide. My parents used to blame this on lack of motivation. While I am pretty sure this, as well as anxiety, does play a part, it is also about other things. Besides, lack of motivation is not the same as laziness. In my case, it feels as though the activity of independent travel overloads me cognitively to the point where I feel incapacitated.

I am assuming Ann’s son is “just” autistic, whereas I am multiply-disabled: autistic, blind and mildly physically impaired. However, with this article, I want to make it clear that there are many reasons a disabled teen or young adult might struggle with life skills and, for this reason, many different approaches to supporting them.

Keep Calm and Carry On Linking Sunday
loopyloulaura

My Worst Fear

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

A Perfect Health Day

I can’t remember when or why I bought the book 1000 Journal Prompts That Will Transform Your Health by Sophia Ley, but today, I felt myself drawn to it. In it, one of the prompts asks us to describe a perfect health day. Here goes.

I get up at 8:30AM. I start my day with prayer. This may not be a direct physical health habit, but it certainly helps me get in the right mindset for focusing my day on what’s right. I then get showered if it’s a day I do this or else I get a quick wash.

After I get dressed, I eat breakfast. I eat yogurt with a little crunchy muesli. This may not be the healthiest food choice physically, but it is something I definitely love and don’t really feel I want to give up on. I also eat some fruit.

After breakfast, I take a little break for writing in my journal and Bible reading. Then I go on the elliptical for 20 minutes. I’m assuming it’s a weekday. If it isn’t, I can go for my first walk instead, as my one-on-one will be there. In that case, I’ll go on the elliptical during the afternoon.

When my day activities staff arrives at 10:15AM, I have coffee. I don’t have a cookie with my morning coffee.

Then I go for a walk of about 25 to 30 minutes. After this, I usually will have some time left to do some of my crafting before my staff goes to help prepare lunch.

For lunch, I have two crackers or slices of bread with peanut butter or jelly. Again, these aren’t the healthiest food choices I can imagine, but way healthier than my current choices of lunch food on most days. I also have some slices of cucumber or some cherry tomatoes and a serving of fruit. I will have another serving of fruit in the evening.

After lunch, I will spend some time doing weight training and resistance band exercises. Then, when my staff returns from their lunch break, I’ll go for another 25-minute walk. Then I’ll have another cup of coffee, again with no biscuit.

I will spend the rest of the afternoon on my hobbies, such as blogging or reading. In the evening, I will go on two more walks with my one-on-one. In total, I will reach my goal of 10K steps.

I will have my evening meal from the meal delivery service as usual. For dessert, I will have a small serving of fruit yogurt.

In the evening, I will drink green tea rather than coffee. Throughout the day, I will also make sure I drink at least two liters of water. This means I will have a glass of water after each walk and with each meal, as well as with each medication round. I will obviously take my medications as prescribed. When it’s a perfect health day, I hope I won’t need my painkillers anymore, but that seems to be beyond my control.

I will brush my teeth twice a day, morning and evening. At 9:30PM, I will start to unwind for bed. I will say a prayer. Then, I will diffuse a relaxing essential oil blend and start a soothing sound track on Spotify. I will go to bed at around 10PM. I will probably fall asleep within half an hour and have a good quality of sleep.

Looking over this, some of these things seem relatively easy to include into my day. Some are harder. Of course, I didn’t take into account the possibility of a severely rainy day when I can hardly go for walks. I’ll have to think of alternative ways of getting active then.

Independence

In last week’s Sunday Poser, Sadje asked what independence means to you. Her question was related to Independence Day in the United States. Of course, one can view independence and freedom in light of one’s national political situation. For example, the Netherlands is a pretty stable democracy. The country has been independent in its current form ever since 1815, though Wikipedia even lists 1648 as the Netherlands’ independence year.

I for one, however, tend to apply independence and freedom much more personally. By independence, I refer to the skills I can do by myself, ie. self-reliance. This includes eating, toileting, dressing myself, writing my blog, etc. But it also includes the skills of self-determination.

I think self-determination is particularly important. By this I mean the ability to know what you want and make it clear in some way or another. Everyone, the disability rights movement assumes, has this capacity. Yes, even people who can’t talk and are labeled as profoundly intellectually disabled. However, it is so commonly overridden by well-meaning family or “helping” professionals.

I remember a client at the first day center with my current care agency for people with intellectual disability I attended. This client had severe cerebral palsy, was profoundly intellectually disabled, couldn’t speak, had epilepsy and was blind. However, somehow, the staff had figured out that bergamot essential oil was her favorite scent.

The same client was also sometimes called “spoiled” when she cried and then was quiet once the staff put a vibrating hose around her body. I’d say she was making known what she wanted. She was using her independence!

With respect to independence as freedom, I, for one, think that self-determination is more important than self-reliance. For example, I get help with my personal care. I myself asked for this after I noticed that it cost me a lot of energy to do it myself. Even though I could, with a lot of verbal instruction, take care of my personal hygiene independently if I really needed to, I decided this isn’t a priority for me. My staff, thankfully, agree.

What is important to you where it comes to independence?

I am also joining MMA StoryTime’s Word of the Day.