Never a Perfect Day: Is It a Bad Attitude?

Posted on by Astrid

Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.

There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.

Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.

#WeekendCoffeeShare (December 16, 2023)

Posted on by Astrid

Hi everyone. It’s been a while since I last joined in with Natalie’s #WeekendCoffeeShare, so here goes. I already had my last coffee for the day and had my weekend soft drink (yay, we still got Dubbelfrisss!) too. I bet you could still get a cup of tea though. That is, I’ve had some later in the evening here. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that I bought a new iPhone last week. I bought the SE 3rd gen. I had originally intended on buying the 15, but that costs like €1000 and I would probably get annoyed with the lack of touchID and a home button. Besides, it’d be a greater risk of being stolen. Still, to be honest, I am slightly disappointed with the battery life of the one I got and had wanted the 15 for its great camera features. Of course, I myself can’t take good pictures at all, but I would’ve loved to have a device that can make them. All that being said, I’m pretty sure the pros of the one I got outweigh the cons.

My spouse bought me a lilac case for it. It’s a little on the thick and rigid side, honestly, so I might want to replace it eventually. I still have my old phone’s case, which the new one fits into too, but I don’t feel like I could in my right mind switch them up. That would be unfair to my spouse.

If we were having coffee, I’d ttell you that I joined the Christmas lights tour in my town yesterday. Originally, the staff hadn’t thought of inviting me and, since it wouldn’t end till 8PM and my one-on-one leaves at 7:30, they were saying I could walk an alternative route with my one-on-one. I was disappointed and tried to say I could walk independently alongside the others just fine and didn’t need my one-on-one. The way I had imagined it the staff would be pushing a wheelchair that I’d hold onto too. As it turned out, the wheelchair users were pushed by volunteers and one staff would need to watch the entire group of ambulatory clients, including me, if I didn’t get my one-on-one. Thankfully though, my assigned staff, who did my one-on-one till 7:30, offered to stay half an hour longer to be able to allow me to participate too. Normally, I’d have to pay like €30 for those 30 minutes of extra one-on-one – not that staff actually earn €60/hour, so don’t ask me why -, but he said he’d find another way.

Along the tour, there were various points where people had decorated their houses or front yards with Christmas lights and some had left Christmas lights along the pavement. We also came by my former support coordinator’s house. You know, the one from the intensive support home, the woman one who was my original support coordinator there. She no longer works for my care agency. Anyway, we were actually instructed to come into her garden, where she was toasting marshmallows and handing out hot cocoa. I initially didn’t recognize her even though I knew she lives in this town and the instructions mentioned her first name. She said, “think [intensive support home],” and then I realized who she was. She asked me how I was doing at my current home (she knew where I’d moved). I said very cheerily that I was doing well and liked it here. I also told her that I found out about the move through my current assigned staff E-mailing my mother-in-law wanting to know my preference for the paint on my wall. “Oh, that wasn’t fun,” she said. “In fact, that was fun,” I replied.

At the end of the tour, we got fries. That was so cool!

If we were having coffee, lastly I’d report that I finally disclosed about my possible dissociative symptoms to one of my staff yesterday. She said she’d seen some of my alters, contrary to what my assigned staff says. Maybe what he’s looking for is me calling myself by different names, which I don’t do unless I really trust someone. I’m trying to maintain the status quo as to whether I/we actually have DID or not, in the sense that it’d be much easier for treatment purposes if we didn’t but then again the parts, whatever you’d call them, are there whether I want it or not.

It’s Not About Them #SoCS

Posted on by Astrid

Lately, I’ve fallen back into the habit of comparing the care I get or don’t get to that which another client gets. I did it with the full-time one-on-one client at my previous home too and it got so far that I ended up calling her derogatory names for getting what I felt I needed. Which, for clarity’s sake, wasn’t full-time one-on-one, but to have staff not leave me during my assigned one-on-one hours for every little thing. And more importantly, I felt it was unfair that she was assigned familiar staff 100% of the time while I got stuck with the temp workers most of the time.

This same issue is what’s at stake again now, since there’s another one-on-one (not sure it’s full-time) client here who doesn’t need to deal with temp workers. I didn’t mind this at all until one day earlier this week, the staff schedule got turned upside down to accommodate him and as a result I got stuck with a temp worker who was here for the first time.

This illustrates my point: I don’t care what others get. It’s not about them, it’s about me.

To solve my unfairly comparing myself to others and falling into an endless trap of what others have or do to “deserve” the care I feel I need, I am going to ask my assigned staff to write up a note saying that staff not engage in arguments about other clients’ care. For clarity’s sake, this is not the same as saying “No arguing, I’m leaving”, like the staff were originally told to do at the slightest opposition from me regardless of topic. Rather, I’d like the staff to listen to me and validate my feelings regarding my unmet needs. After all, to me, it doesn’t matter what someone else gets or doesn’t get, but when my care is compromised, I feel bad.

This post was written for today’s Stream of Consciousness Saturday, for which the prompt is “to me”. I realize I didn’t make the phrase central to my piece, but this was what popped into my mind.

Sunny Sunday (November 26, 2023)

Posted on by Astrid

Hi everyone. Today I’m feeling all over the place. It’s been like this for most of the week. I’ve been struggling with lots of unfamiliar staff sent out to do my support and my day schedule being screwed up for various reasons. However, I’m going to focus on the positive. I’m joining in with Sunny Sunday. Like Leigha, I am going to focus on the things I’m grateful for, from the general to the specific. I am using Maslow’s hierarchy of needs as a guide.

1. Physiological needs: Food. Particularly, the fact that we had French fries yesterday (oh wait, that’s not a need). My relatively good physical health. A roof over my head.

2. Safety needs: my financial security. The fact that my staff did try to get me a familiar staff person for my one-on-one at least part of the time (although it was after I’d had an outburst).

3. Love and belonging needs: my spouse, who phoned me this evening despite having a headache. A visit from my mother-in-law on Tuesday.

4. Esteem needs: my new day schedule, which will take effet tomorrow, giving me more time to engage in activities I enjoy. Well, technically it’s not more time in total, but the day schedule is less cut up into small parts, so I’ll have a larger time slot in the afternoon for something like polymer clay.

5. Self-actualization needs: renewed motivation for actually doing something creative. It hasn’t yet formed into something concrete, but I’m working on that.

What are you happy about?

October 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting on the past month’s happenings. As usual, I’m joining in with What’s Been On Your Calendar? (#WBOYC).

First, I’m finally going to share the polymer clay unicorn I crafted on September 30. Okay, that’s not technically the past month, but I didn’t fully finish it and take a picture till October 5.

My spouse joked that, judging by its colors – fuchsia, yellow and blue (the blue is called Peppermint, don’t ask me why) -, it’s typical of a specific music scene from the nineties. The staff who helped me craft this unicorn, is only slightly older than me, so she understood.

I haven’t really been crafting with clay much over the month of October. I did though help cook dinner twice. I also made a few smoothies.

I also did a good amount of walking, although I didn’t meet my movement goal every single day this month. I blame the rain, because the one day I didn’t meet the goal, it was raining almost constantly. Besides walking, I went swimming once.

My mother-in-law visited me three times this month and my spouse came by each week. My sister had originally wanted to come by this Sunday, but I prefer not to see her or my parents in the institution. Instead, my spouse and I are going to see them and my parents at Christmas.

Mental health-wise, the month has been quite good, truthfully. I mean, I’m still adjusting to my new care home and it’s October, which is a hard month for me each year. Taking this into consideration, however, I can’t complain. I am intensely grateful for the fact that most staff go out of their way to accommodate me. Initially, I was told by some that I’d be assigned the temp worker almost by default, which set me off because that was exactly what happened at my old care home and, given my attachment issues, I struggle with this. I spiraled into a bad crisis for this reason last week. Thankfully though, the staff now try their best to assign at least a somewhat familiar staff to me if they have to be a temp worker after all.

With respect to my physical health, I am happy to report I didn’t lose any more weight. In fact, I gained a few pounds. It wasn’t like I definitely couldn’t lose any more weight for my health, but I would’ve felt concerned had I lost more weight, given how much I ate over the past month. I am now within the weight range I agreed upon with my dietitian rather than slightly below it, so I’ve decided I can no longer afford as many treats as I used to consume. Yesterday, I convinced my assigned staff to add my food plan to the manila folder of important information that’s on my table in my room. After all, staff would often hand me a cookie (or two) without even thinking about it with each coffee break, despite the fact that my food plan has one only with my evening coffee break. I am due for weigh-in tomorrow morning again. Fingers crossed I won’t have gained significantly.

The Wednesday HodgePodge (October 25, 2023)

Posted on by Astrid

Hi everyone. It’s been a while since I last posted. The past week has been hard, but I’m feeling better now. I’m joining in with the Wednesday HodgePodge once again. Here we go.

1. October 25th is International Artists Day…do you have a favorite artist? If so tell us who and why.
No, I don’t. I’m blind so can’t appreciate paintings or other means of visual art. As for sculptures, I haven’t touched enough to know much about them.

2. Would you describe yourself as artistic? Elaborate.
No, not really. I mean, I’m creative with words and I love to craft, but I don’t have the slightest idea of what makes a good piece of art.

3. What’s a skill, task, hobby, or job you’ve done so often you now have it ‘down to a fine art’?
I’m not sure what that expression means, but if it means you can do something very well or it takes little effort, nothing.

4. How often do you dine out? Fast food, fine dining, or somewhere in between? Tell us about a less than stellar restaurant experience you’ve had recently (or not so recently if that’s easier).
I rarely dine out these days, but my spouse and I get lunch out each week. I can’t remember any recent negative restaurant experiences. I mean, having iced coffee and cake at Starbucks about a month ago was a bit disappointing.

One experience I’d like to share though, has nothing to do with the restaurant, but with the person I went eating out with. In late August, my assigned staff for my old home invited me out for lunch to say goodbye because of my move. In advance, she mentioned nothing about who would pay, so I assumed we’d each pay our own food. This, I consider already thoughtful of me, since had she not been staff, I’d assumed that her inviting me and not mentioning costs would mean she’d pay. Recently though, my spouse got the monthly care home bill for additional costs such as laundry etc. And guess what? Judging from the amount, I’ve most likely paid for both of our lunches. I’m not going after it, but next time I’m going to make sure I understand up front what I’m going to pay for something special offered to me.

5. Do you celebrate Halloween? To what extent? Are there trick or treaters where you live?
No, I don’t celebrate Halloween. I do like it though. Maybe next year I’ll get some decorations, but this year I didn’t feel like I have the space for any temporary decorations. As you know, I live in an institution, so no trick-or-treaters here.

6. Insert your own random thought here.
I went swimming today. One of the staff stayed half an hour past the end of her shift to be able to support me. And yes, I did ask about having to pay for this myself, since in Raalte a client would have to pay individual support hours for this and the hourly fee is far higher than what a staff earns per hour. The staff told me I won’t need to pay. Swimming was great! There were six of us residents participating. Thankfully, the staff who supported me did ask that the music be turned off. Residents here take turns swimming, so it isn’t like I’ll be able to go each week, but I’ll most likely be able to go swimming another time.

Walking and Making Smoothies

Posted on by Astrid

Hi everyone. I have been struggling a bit lately, but today was a good day. I went on three walks, one over an hour and 4.5km long. It rained for most of the day, but I’m not made of sugar, as they say in Dutch. I honestly have no idea where that saying comes from and what sugar has to do with not being water-resistant. I mean, there are many other substances that will melt or otherwise dissolve in water. As a side note, we only had a slight drizzle on some of our walks, so it wasn’t like I got soaked in the rain.

When the rain did come pouring down, I decided to make a smoothie. I had ordered some supplies online yesterday. Like I’ve explained before, my care home does have its own postal code but officially you need to address things to the main building, adding the home in an additional address line. Most stores though don’t allow for two address lines. So, in an attempt to bypass the need to have stuff sent to my in-laws and wait a week for my spouse to bring it here, I decided to say “screw it!” and address my order to the home with its own postal code. And guess what? It got delivered right to our doorstep. This is not how I should be handling things if I can avoid it, but it’s quite tempting, honestly. Waiting a week for my stuff rather than having it delivered within 24 hours of my placing my order, isn’t very appealing.

I had ordered carrot juice, mango nectar, agave syrup and hemp seeds. The hemp seeds are in a lot of smoothie recipes and I’d kind of impulsively ordered them to get to the minimum order amount. The person with whom I unpacked my package, didn’t ask anything about the hemp seeds, but the next staff did make a bit of a weirded out sound. I had looked it up online and found out that usually only the shells (which mine have been removed from) contain trace amounts of THC. Nonetheless, I decided not to add them to my first smoothie, which I was going to share with my fellow residents.

I did add carrot juice. I also added frozen mango chunks, which we’d ordered from the online grocery store that delivers to care homes. We added one banana and a pinch of cinnamon.

Honestly, the smoothie turned out a bit thin for my liking, but it was definitely delicious. My spouse later said that ginger and orange make for a better addition to carrot juice, which I think may be true. I’m going to try this with my remaining carrot juice.

In an Ideal World

Posted on by Astrid

In an ideal world…
I’d get all the care I needed,
From all staff I trusted.

I’d be able to engage
In activities I enjoy-
Crafting, baking, walking, swimming.
Without a care in the world.

I’d live closer to my spouse
If not together.

Sigh…
In an ideal world…

This post was written for Sammi’s Weekend Writing Prompt, which this week is “ideal”. I realize that my dreams for an ideal world are a bit childish and rather self-centered. The piece was based on the thing I at one point told staff at my old home: that, in an ideal world, I’d get one-on-one all day long. This isn’t actually true, since I need alone time to read and blog and phone my spouse, for instance. However, I do feel there are ways in which my care could be improved. Some of them might be realistic, while others fall into the category of “in an ideal world”.

The Wednesday HodgePodge (October 4, 2023)

Posted on by Astrid

Hi everyone. It’s been a few weeks since I participated, so I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. What’s something that scares you?
Too many things to mention, although I’m not one to have many classic phobias. My main one is toxiphobia, a fear of poisons.

2. Do you care where the food you eat comes from? To what degree?
Not really, honestly. Not that I get a say in where my care home food comes from in terms of the supermarket they order from – it’s some type of countrywide supplier specifically for care agencies. However, it’s not like I’d care much even if I did have a say. I do care about having a say in the specific foods I get to eat, which thankfully I have. When it comes to organic or not and the country my food originally comes from, I honestly am too lazy and stingy to care even when I go to the brick-and-mortar supermarket in the next town.

3. What’s something you wish you’d spent more time doing when you were younger?
Be creative. I did love writing as a child and spent a good amount of time on that, but I definitely wish I’d spent more time on other creative outlets.

4. Let’s play autumn this or that….pumpkin spice or apple cider? Corn maze or haunted house? Horror film or Hallmark movie? Blanket or sweatshirt? Watch football or watch the World Series? Foliage-red, yellow or orange?
Pumpkin spice for sure. Corn maze, though I don’t care for it either (but I hate haunted houses). Neither on the movies, but a Hallmark one if I have to choose, since the reason I hate haunted houses is because I startle extremely easily and also I don’t want nightmares. Is the blanket supposed to go onto me in the same way as a sweatshirt? Then I’ll choose a sweatshirt because it’s easier to keep in place while I type. Neither on the sports thing. That is, I’ve never heard of the World Series but assume it’s sports-related too and I never watch sports. All three colors are beautiful.

5. This time last year where were you and what were you doing?
Such an intriguing question especially today. October 4, 2022 was my last full day in the care facility in Raalte. Most of my furniture was being moved to the intensive support home (my now old care home) that day, as Raalte’s transportation person was off on Wednesdays (something thankfully my staff did realize beforehand, unlike with the recent move). Can you imagine I lived in three different care homes over the past year?

6. Insert your own random thought here.
October 4, 2023. I’ve been living in my current care home for just over two weeks and am beginning to consciously or unconsciously erase my connection to the intensive support home. Honestly, I feel awful when a temp worker tells me he knows me from there. That being said, it’s not just because it could hardly get worse than there, that my current home feels like a better fit.

September 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. September was a true rollercoaster of a month. Let me share. I am joining in with What’s Been On Your Calendar? (#WBOYC).

The month started with me being notified by my support coordinator for my now old home that I’d be moving to my current care home on the 18th of the month. The boxes arrived the next Friday and I started packing. I had a visit at my new care home on the 15th, which my mother-in-law also attended. The new staff seemed nice, but I did feel overloaded having coffee in the living room.

My move went about as chaotically as could be. For one thing, institution transport weren’t available that day, so my old support coordinator had to move most of my stuff, the rest to be moved the next day. For another, the staff here at my new home weren’t prepared with an extra staff member when I moved, so my old home’s staff had to help me get settled.

Handover also went rather frustratingly, so I was happy when my old home staff pulled away after a day. Only then began the trouble with my day schedule. I had been informed by my old home’s behavior specialist that the intention was to keep my day schedule mostly the same as at my old care home while I adjusted. This wasn’t to be. In the first week, at least three adjustments were made to my day schedule, all cutting my hours, and several more changes were not put on paper but were implemented in practice. The most frustrating changes took place in the early afternoon, including a 60-minute group activity time slot. I tried to make it work, but was often too easily overloaded, leading to extreme irritability throughout the day.

Thankfully, yesterday my assigned staff, after talking to the manager, informed me that I would be allowed a one-on-one activity time slot during the early afternoon for now anyway, during which I can do something creative. We’ll have to see how this all works out once my one-on-one has to be renewed in November.

Today, in an attempt to celebrate my time to spend doing crafty activities, I created my first polymer clay unicorn while at this home. I would’ve been able to finish it within said activity time slot had we not also been looking at recipes for baking and put my laundry in the washing machine. Thankfully, my one-on-one staff for this activity time slot was able to come back at a later time and finish the unicorn with me.

Overall, like I said, this month was a true rollercoaster with lots of ups and a few deep downs. Things are looking up now though.