Today’s Small Joys (March 16, 2025)

Posted on by Astrid

Hi everyone. I’m struggling a bit but don’t want to share why. Instead, I’m sharing some small joys from the day again today. I’m participating in Sunny Sunday. Here goes.

1. Sunshine. It’s chilly (about 9°C in the afternoon) but sunny. With this being the case, my partner and I were even able to sit outside for our lunch.

2. Good coffee. The lunch we had was a bit disappointing to me especially considering how much it cost, but the coffee was good.

3. Being able to wear a nice, handmade necklace and being complimented on it by my spouse. I bought glass beads and wire a few days ago and I created my first necklace with them yesterday. I wore it today, which made me feel good.

4. Finding a couple more necklaces, most handmade by me many years ago, in the bag my spouse brought me after clearing out the house.

5. Unicorn soft toys. I was clearing out my box of stuffies this evening, because my spouse had also brought me some stuffed animals and my box was already quite full. I didn’t seriously know how many unicorn soft toys I have. Those, I all kept.

6. Looking forward to the sensory room the staff are creating on the other side of the home. I actually plan to donate some of my unwanted soft toys to that project.

7. Finding one of my first polymer clay creations in the bag too. It’s a baby. It’s extremely ugly, so I threw it away. However, remembering my making it, as well as realizing how far I’ve come along on my creative journey, made me smile.

Honestly, many of these things are more nostalgia-inducing than purely joyful. Remembering the good times is a positive thing though, so I’ll still focus on that.

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.

Today’s Small Joys (March 2, 2025)

Posted on by Astrid

Hi everyone. I’m struggling intensely today. I often say that these days are the best for gratitude lists, but I don’t feel capable of doing an entire ten things of thankful. Instead, I’m going to list some small pleasures from today. I’m joining Sunny Sunday.

1. Coffee. My staff brought me an extra cup of coffee when waking me up.

2. Crunchy muesli. I treated myself today.

3. Earning some top commenter achievements on Reddit. Don’t ask me how.

4. Beautiful weather: it was quite sunny and mild with a daytime high of 10°C.

5. A delicious burger at McDonald’s.

6. A hug from my spouse. In fact, the entire visit was good. Having my spouse on my side genuinely helps.

This was easier than I thought. In fact, the E-mail newsletter I got this idea from, suggested listing only one to three things and I made it to six.

Abandonment Wounds: What Will Happen If I Can No Longer Mask?

Posted on by Astrid

I’ve been struggling with attachment issues a lot lately. Not related to a specific person this time. I mean, yes, like I said on Wednesday, four of my “favorites” among the staff are either on leave or will be leaving (be it temporarily or permanetly) soon. That’s not the problem, since I’ve learned the hard way to expand my list of “favorites” when necessary. It’s in my best interest too to avoid a situation like the one with my assigned staff in Raalte, who was leaving and left me with just two other trusted staff.

The issue I’ve been dealing with lately, is much more existential: the knowledge that, if I’m truly myself, I’m unacceptable. Not because I’m some kind of criminal. I’m not. Rather, I’m an outcast. And while I won’t be in the prison system for that, being shoved around care home after care home while not having family to advocate for me, will be equally horrid.

I have been struggling with memories of the circumstances surrounding that assigned staff leaving. A few months before she left, I sent her a rather dramatic E-mail about how no-one will be in my life forever. Well, my spouse says we’ll always be in each other’s life, but truthfully we can’t know that. Besides, when we lived together, there were just a little too many situations in which my spouse (understandably) was disappointed in me that are however things I couldn’t help. For clarity’s sake: I don’t blame my spouse, but maybe with my being multiply-disabled, I’m not suited for “traditional” long-term relationships. Ha, now I’m reminded that my spouse often reminds me that I said when we were choosing to be a couple, that I didn’t want a traditional relationship.

Of course, the reason I’m undesirable by society’s standards isn’t my fault. Like, I can’t help being disabled. But just because it isn’t something I choose, doesn’t make it any less real or hurtful. In fact, it hurts more because I can’t choose not to be me.

I mean, I’ve masked more or less successfully for many years. Mostly less successfully, but my parents prevented me from landing in the care system at a much earlier age than I did by claiming the police and other people who thought I was disturbed, were just stupid. They were masters at manipulating the system. I am not.

Back to my assigned staff in Raalte. She was the first to take my wish to leave seriously. I assume she genuinely felt that the intensive support home could better serve me than the care facility, but I also assume she had a team and a manager to deal with and it remains a fact that some of her coworkers couldn’t cope with my behavior. Which was, for the record, much less challenging than it is now.

It genuinely scares me to think of what will happen if (when?) I can no longer mask at all. There was this news feature sometime in 1997 or 1998 about a girl, aged about sixteen, who was too intelligent for intellectual disability services but who still couldn’t cope in adolescent mental health services and was, as a result, restrained long-term. After her family sought media attention, she was transferred to a treatment center for youth with mild intellectual disability and severe challenging behavior. I don’t know what became of her.

Last week, when I had several severe outbursts related to my most recent frustration, I begged my support coordinator to ask the behavior specialist to involve the Center for Consultation and Expertise (CCE) again. I really want to get the ball rolling on getting them involved before it’s too late and I’m being kicked out again, like the last time they were involved in 2018. In this sense, a consultation might help more this time, because at this point, as far as I know, staff aren’t yet so much at their wit’s end that they see the situation as unresolvable. But I’m scared of what will happen if they do get to this point, like apparently some staff in Raalte were.

#WeekendCoffeeShare (January 3, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I usually do this on Saturdays, but I want to do it today. It’s 8:30PM, so I’ve had my last cup of coffee and soft drink for the day, but as usual, you can always grab a cup of your favorite beverage. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. New Year’s was windy and rainy. Today, we got a bit of snow. Let’s just say I can’t wait for spring.

If we were having coffee, I’d then tell you that, due to the weather, I didn’t meet my movement goals most of this week. That is, over New Year’s, I didn’t feel safe going outside because of the fireworks. My monthly challenge on my Apple Watch is to burn 335 active calories a day 14 times. This should be easy, but I’m honestly a bit discouraged right now.

If we were having coffee, I’d share that, on Monday, I tried to make a smoothie only to discover that tons of black critters had crawled into my blender. My outdoor cushions had been next to the blender and that’s where they came from. The cushions were horribly moldy too. Needless to say I threw out the cushions. I could’ve washed the blender, but the idea of these critters ever having been in it, creeped me out, so I discarded it too.

Thankfully, when I explained the situation on the phone, my spouse offered me a blender that had been sitting in our house since my spouse’s birthday in 2023, because it was a gift from me. Apparently my spouse hardly ever uses it. It’s a lot smaller than my old blender, so no more smoothies for the entire home. It works okay though, as I made my first smoothie in it yesterday.

If we were having coffee, I’d share that my New Year’s was okay. I had originally planned to stay at the institution, but ended up spending the night with my spouse at our house. For the most part, we just chilled and watched a little TV. We ate a delicious pasta bake for dinner. We hardly made it to midnight before feeling too tired to remain awake. Unfortunately, the fireworks were really bad, so it was 2AM before we properly slept. Neither of us usually sleeps well when we’re together anyway. I left by 2PM on New Year’s day.

That evening, the staff here at the institution had ordered salads, baguettes and various kinds of meat. It was good. I also had a cup of ice cream topped with loads of whipped cream for dessert.

If we were having coffee, lastly I’d share that, like I suspected, I gained weight over the holidays and am now three pounds over my upper goal weight. I’m pretty sure though that, if I gained three pounds in two weeks, I can lose at least part of the weight again before my dietitian’s appt on the 15th. I am actually considering stopping seeing the dietitian, because I know full well what to do to remain somewhat healthy and I don’t think the dietitian helps keep me accountable. I don’t want to ditch my goal (eh, hope) of being more health-conscious, but I honestly don’t see how the dietitian helps me with this. I’ll give it some more thought and may use my weight on the 15th (ie. a factor of how successful I am at actually following through on what I know to be healthy) as a factor in my decision.

2024: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year and this means doing a review of the past year. I realize I wrote about my 2024 on Saturday already, but I’d like to do a proper review today.

The year started out pretty tough, because I had some issues with my assigned staff, now this side of the home’s support coordinator. I won’t go into detail, but let’s just say he isn’t the most socially adept and his attempts at gaining my trust went horribly wrong. This is the reason he isn’t the one making decisions for me or having meetings with me about my care.

I have had some issues with getting proper care over the past year in general, like when the behavior specialist decided to do the minute-by-minute compensatory system when I was in distress during my time without one-on-one. The reason was the idea that I would need more and more care if they didn’t do this. That is, that’s what my then support coordinator said, but I figured out that the actual reason was the idea that I’d purposefully work myself up in order to get more care. This is simply not true: I pretty regularly tell my staff that they can leave early if I’m doing well, but I just can’t plan my distress to suit my one-on-one hours.

Over the summer, I had some issues with the fact that there were especially many unfamiliar temp workers assigned to my one-on-one care. I mean, I realize that there are more temp workers over the summer when the regular staff are on vacation, but the fact that most of them were assigned to me, frustrated me.

There have been other frustrating aspects to my care, but I’m so glad my support coordinator and two new assigned staff are trying to build a trust-based relationship with me rather than telling me I’m just a negative nagger.

In other departments, the year was a mixed bag too. I definitely didn’t do as well as I’d hoped with my movement, crafting or blogging. In fact, I honestly did worse than I did last year. I did, however, try cooking and baking more often.

Another positive is the fact that I am fully off my PRN tranquilizer and my topiramate and am now on a significantly lower dosage of aripiprazole (my antipsychotic) than I was last year. I also started therapy. First, I tried play therapy, but that wasn’t a success from the get-go. I now am in the early stages of movement therapy based on the Sherborne method.

In general, when I look back at 2024 and compare it to 2023, I can see how in some ways I did worse this year. This feels a bit disappointing and I’m not sure why it is. It may be because of my having significantly tapered my medication. I hope that whether this is the case or not, it won’t get worse in 2025.

That being said, I do feel that I’m starting to develop a tiny bit of trust in my staff and that wasn’t the case in 2023 at all. Here’s hoping I can continue on this journey next year.

This year was a true year of ups and downs in other areas, such as my marriage, too. Thankfully, I’m feeling optimistic that my spouse and I will make it through stronger. We’re both confident that we’ll always be soulmates!

In the health department, I did okay. I gained a little weight, but not so much that it’s worrisome to my dietitian. I remember telling her recently that I hadn’t gained weight last year over the holiday season, but I’m pretty sure that wasn’t correct. As such, I hope that, if I’ve gained weight over this holiday season, I can lose it again.

One last positive: I finally got suitable orthopedic shoes, yay! They still get damage often due to my drop foot, but thankfully not to the point that they can’t be fixed.

Gratitude List (December 29, 2024) #TToT

Posted on by Astrid

Hi everyone. I’m doing a gratitude list again. As usual, I’m linking it up with Ten Things of Thankful. Here goes.

1. A nice Christmas-themed walk around institution grounds on Tuesday. We were able to see lights, listen to a barrel organ playing festive jingles and at the end of the walk, we could do some crafty things like decorate a clementine with cloves and create a paper rose.

2. The fact that the labeling tape I ordered online early in the week, actually arrived on time for my visit to my in-laws on Christmas (where I’d had it delivered) and the tape also fit into my home’s label printer. I as a result was finally able to label my new clay.

3. Fries. I always have to include several food-theemd thankfuls, don’t I? On Tuesday, we had French fries.

4. Seeing my spouse and in-laws on Christmas.

5. Making salad on Boxing Day. A student staff’s mother had made homemade Turkish-style meatballs called köfte.

6. Being able to play DJ at the home’s dance party on Friday. Another student staff had brought his large Bluetooth-enabled speaker and I asked him if I’d be allowed to connect it to my iPhone and be the DJ. That was so cool! At first, I played ABBA like I’d requested the staff do the previous time we had a party. Then I put on a random EDM playlist, but that wasn’t well-received, so I switched to my own personal playlist of Dutch and dialect songs.

7. Getting in lots of exercise minutes today. I took three longer walks.

8. The fact that my support coordinator reassured me that, pending my one-on-one renewal request, things will stay the same for now and no hours will be cut. Officially, my one-on-one needs renewing by January 1 and we haven’t heard anything yet. I’m still struggling with my current hours particularly in the evenings, so I really hope that things won’t get worse. We’ll see.

9. Meeting up with my spouse again yesterday. And looking forward to going to our house over New Year’s.

10. The fact that the festive season is almost over. I can’t stand all the chaos.

Gratitude List (December 22, 2024) #TToT

Posted on by Astrid

Hi everyone. I’m joining Ten Things of Thankful today. Let’s see what I’ve been grateful for over the past week.

1. Pizza. Technically, this is one from last week. Last Sunday, there was no meal delivery service meal I liked, so I chose to get takeout pizza. I chose one with onions, mushrooms, bell peppers, sausages and fresh garlic.

2. Another food one: my Christmas hamper. This year, we had the choice between a food hamper either regular or low-cal, a beauty hamper or a crafty one. Figuring that budgets are tight, I decided to go for the regular food hamper, as I doubted what was in the others would be of interest to me. I got marshmallows, chocolate, chips, whipped cream and waffles, cocoa and maybe I forgot something. Oh yes, I did: pretzel sticks, but I gave those away. I probably gained several pounds from enjoying the food and I have the marshmallows and chocolate still unopened.

3. Oh wait, another food one and a more likely cause of weight gain: a new staff had gotten chocolate with salted caramel as a welcome present to the care agency, but she didn’t like salted caramel, so gave the bar to me. That one is gone by now.

4. The fact that I was able to take a bath on Wednesday. I used a bath bomb that changed colors and had a nice scent (although for the life of me I can’t remember which).

5. My decreased antipsychotic dosage that I started on last Friday. I’m now on 15mg of Abilify a day. So far, I haven’t been significantly more irritable.

6. The fact that the days are officially getting longer now. Man, do I hate winter and especially the darkness.

7. A good visit from my spouse today. We hadn’t seen each other last week, so the visit felt extra special. We went shopping at Hema, my spouse’s favorite store, and ate lunch there too.

8. The fact that I was able to go for a walk today despite the weather being rather gloomy in the afternoon. Thankfully though, no rain in the evening.

9. The fact that I’m still creatively inspired. And generally more motivated to do things than I used to be.

10. Peace. I mean both inner peace and outer peace. That is, I’m still experiencing anxiety, but it isn’t nearly as severe as it was several months ago. I’m also so grateful that, at least for now, I live in peace.

How My Body Has Changed As I Got Older

Posted on by Astrid

Hi all! This week, there are many interesting writing prompts in the Writer’s Workshop. I am choosing to write about ways my body has changed as I’ve gotten older.

I’m now 38 and I consider this an age at which positive changes can still happen. That is, of course you’re never too old to start a healthier lifestyle, but at a certain age, I assume it will not have as much effect as when you’re younger. In fact, I’ve heard that smokers have until age 35 to quit or their lungs will never be as healthy as those of non-smokers. Thank goodness I’ve never smoked.

In my case, my thirties so far were the decade of getting healthier in many ways. At age 30, I weighed 80kg (176lbs), which is over 20kg overweight for my height. I slowly started losing weight then and got to 55kg )121lbs) last year. Since then, I’ve gained some weight back on, but I’m barely 1kg overweight now at 59kg. I agreed with my dietitian that I should not gain any more weight, but the 55kg I weighed last year is also the lower border of my goal weight.

Weight aside, I got slightly fitter. When I weighed 80kg, my spouse proposed we do a brisk walk for just over half an hour each day to get the weight off, but I could barely do fifteen minutes. Now I must say I don’t usually walk as fast as that brisk walk should’ve been, but then again I couldn’t keep up with my spouse back then either and now I can walk for an hour sometimes.

I do feel that my flexibility and strength have decreased a bit. Not that I ever was flexible or strong at all. In fact, my spouse jokes that a brick is more flexible than me. However, when we tried a game of Twister at the home recently, I noticed I was hardly able to stand on all fours even in a simple position. I’m pretty sure I used to be able to do this.

My mobility also has slightly decreased. I fall when I wear anything other than my orthopedic shoes. I also used to think my shoes get damage a lot easier from the way I walk. That is until I recently looked at the shoes I wore at my wedding and saw these were damaged too just from one day.

When I got married, I was 25 and about at the weight I’m now at. I recently tried on my wedding dress just for the fun of it. The skirt fit, but the top was too tight.

With respect to appearance, I’m told I haven’t changed much over the years. That is, my spouse found my first grey hair when I was 31 and I now have quite a few, but my hair still looks dark overall. I don’t have many wrinkles either. In fact, it feels as though my frown wrinkle has decreased. That probably isn’t possible, so maybe I’m just not bothered by it as much as I used to be. I’m also grateful to report that my hands, which are among the body parts I feel most positive about, are still pretty smooth.

Overall, I don’t think there’s been an age at which I was happier with my body than now. That is, I do get frustrated with my impaired mobility and flexibility. However, when I was thirty, I was probably less fit overall and I wasn’t happy with my appearance at all. Now I feel content enough with my body to wear nice clothes and occasionally jewelry. I in fact reserve my loose-fitting sweaters and fleece vests for when I’m sick now.

Gratitude List (December 1, 2024) #TToT

Posted on by Astrid

Hi everyone. It’s nearly 11PM as I write this. I feel motivated to write, but can’t really think of a lot to write about. However, a gratitude list is always good. I’m joining in with #TToT. It’s been forever! Let’s see what I’ve been grateful for this past week.

1. Inspiration to craft. I mentioned this yesterday too and have been claying again today. I also have many ideas floating around in my head.

2. A visit to a nearby market again. I got fried calamares at the fish stand. I also bought spicy olives.

3. The pasta salad with tuna we had yesterday. And the fact that it wasn’t used as an extra but as the main meal.

4. Sleep. I’ve been sleeping a lot over the past few days. Not always at night, but who cares?

5. Warm clothes. I’m nursing a cold, like I said yesterday, and, though I don’t have a fever, I do feel more comfy wearing warm clothes.

6. The fact that I managed to talk out a recent issue with a staff today. She tried to assign me a temp worker on Friday even though there were other options. It turned out she hadn’t fully understood the agreement.

7. The fact that I now feel at least a tiny bit comfortable with the new staff. With the latest addition to the team, I struggled a bit, but we had a good time on Thursday.

8. My mental state. I’m still experiencing anxiety on a daily basis, but it’s a lot less severe than it used to be.

9. Motivation to write. Like I said yesterday, this is a sign that my mood is improving.

10. The fact that I no longer live independently. I was reminded of the fact that I’m intensely grateful for this again this evening when my spouse called me because of stress related to our house. I feel a bit guilty for not being able to help, but at the same time I’m so glad I no longer have this responsibility, because when I did, it didn’t mean less stress for my spouse and it did mean significantly more stress for me.