#WeekendCoffeeShare (April 2, 2022)

Posted on by Astrid

Hi everyone on this cold Saturday evening. I am joining #WeekendCoffeeShare today. I’m afraid I just have water or maybe the staff has put some soft drinks in the fridge by now. My favorite soft drink, Dubbelfrisss, wasn’t cold when I had my evening drink about an hour ago. Anyway, let’s have a chat.

If we were having coffee, I’d tell you that I finally have been crafting again today after a week of just watching crafty videos and doing nothing creative at all. That is, I’ve been blogging, which counts too, of course, but I haven’t touched my polymer clay or jewelry-making supplies or macrame cords or anything.

Today, I finally did a couple of pieces for the mobile for the baby my sister is expecting. I also finished the polymer clay hedgehog I’d started on about a month ago. At first, I was disappointed, because I’d used up all of a particular color for its body and now it was nowhere to be found, so I couldn’t do the ears in the same color. Turns out real hedgehogs also have slightly differently colored ears than their bodies. Besides, I never really meant to be doing a fully realistic sculpture anyway (I can’t).

If we were having coffee, I’d share that the rest of the week was quite meh. I’ve been having tons of plans in my head, but no ability to actually put them into action. Today, I also experienced a ton of flashbacks and internal chaos. Seriously, the discrepancy between my intellectual ability and my emotional immaturity is really getting at me. I find that I can intellectually think of a lot of things that emotionally I cannot handle at all. I’m not sure if this makes sense.

If we were having coffee, I’d tell you that I may want to research an autism support method by Colette de Bruin. My assigned home support staff pointed it out to me and said she’s pretty much using the method on me already, but I may benefit from learning about it myself.

If we were having coffee, I’d share that I am very happy with the latest iOS update. I finally was able to do some reading again on my iPhone yesterday, since the update fixed a bug that caused my Braille display to become pretty unresponsive. I usually read with just my Braille display, as I don’t like VoiceOver’s synthetic speech for that.

If we were having coffee, lastly I’d tell you that I have a quiet weekend, because my husband isn’t coming over and I have no other plans. Next week though is going to be busy, especially the weekend. I am going to the nationwide cerebral palsy day with my mother-in-law. I will be attending a workshop on aging with CP in the morning, which I am really looking forward to. In the afternoon, I’ll be attending a yoga class. I may not be able to write a coffee share post then, especially since I’m also supposed to stay up-to-date with the #AtoZChallenge. I’ll be certain to write about it though.

How have you been?

Gratitude List (February 12, 2022) #TToT

Posted on by Astrid

Hi again all. I want to post a gratitude list again. Actually, I sort of did one yesterday too by sharing the material things I’d loved. Then though, Ten Things of Thankful was not yet online (or rather, the wrong linky was). Since I like to link my posts up there, I waited till today to write my actual gratitude list. Oh wait, that makes me look spammy, I guess, but oh well. Let me share some things other than chalk pastels and tuna I’ve been grateful for.

1. Seeing my husband. I am in Lobith right now and am so grateful to be with my husband again. I couldn’t see him last week due to the storm and haven’t been in Lobith since Christmas, so it’s especially good.

2. Pizza. Oh, that’s a material thing, but who cares? We ordered Domino’s this evening and, despite the fact that their menu has shifted to include more vegan and gluten-free options and fewer regular pizzas, my pizza (spicy chicken meat lover’s with extra chicken) was delicious! I initially typed a long rant about how Domino’s has gone too far with their “healthy” trendiness by doing the vegan and GF (which I doubt is genuinely 100% GF) thing at the expense of meat lovers, but I deleted it. I’m just grateful they still had at least something spiced with chicken.

3. My husban’ds Valentine’s Day present for me. I got 2 sets of polymer clay: one with 12 25g blocks of Fimo soft and the other with 6 42g blocks Fimo kids. I haven’t used Fimo kids before, so have to determine whether it’s not too soft for my liking.

4. Decent sleep most nights. Either the pregabalin is starting to work (although I haven’t noticed an improvement in my anxiety level yet) or I am for another reason better able to sleep. I had only one bad night this past week.

5. Eggs. Until a few months ago, a former staff from my care home and her husband would give us a tray of eggs from their own chickens each week. Sadly, the husband died and the chickens had to leave their house, which meant no more eggs for us. However, usually, we now order eggs from the supermarket. I recently found out we now even have an electric, talking egg boiler. Well, I had a boiled egg on my bread this morning.

6. Sunshine. It’s cold outside. Okay, I say that all the time, but the temperatures dropped to below freezing point last night. However, it’s also been quite sunny out. I love looking out of my window to see the sunshine.

7. Longer daylight. This may be related to the last one, but not necessarily so. I love the fact that the days are getting longer. As my husband said, we’re heading towards summer! 🤣

8. Weight loss. I already mentioned this afternoon that I crossed the line from obese to just overweight this week. My dietitian says the Dutch Food Center doesn’t even say you really need to lose weight if you’re in this category.

9. My shoes having returned from the orthopedic shoemaker. Not the orthopedic footwear, mind you. That’s the never-ending story if you ask me. However, for now, I have useable shoes again.

10. My PC. I am so grateful my PC still works. My iPhone, after all, more or less stopped cooperating with my Braille display altogether with the latest iOS upgrade, which should actually have fixed the very problem it now seems to have made worse. Thankfully though, I have a functioning PC with the latest JAWS (my screen reader), on which I can do most things I want to do. I just tried accessing the WordPress.com app to check my notifications, but for some reason, that won’t work still. I’m just grateful I can write E-mails and blog posts on my PC.

What are you grateful for?

Early Days Online

Posted on by Astrid

Yesterday, Rory asked whether we remember our first times online or with a computer in general. I certainly do. I may have shared some of these memories before, but just in case I haven’t, I’m going to dedicate a post to them.

I got my first computer at the age of eleven in January of 1998. That one didn’t have an Internet connection though. Its operating system, Windows 95 SP2 (which my father explained was like Windows 96), did support Internet Explorer, but my screen reader didn’t. That screen reader, Slimware Windows Bridge, was quite primitive. So was the Braille display, which I remember to be attached to my computer via the printer port. Though it did work with just Braille, without speech, if the speech unit in the Braille display malfunctioned, so did the entire thing.

In 2002, I got my second computer and my first JAWS version. For those who don’t know, JAWS is the most commonly-used screen reader today. This computer had Windows 98 installed on it and it did have Internet access.

My father at first was adamant that I use the Internet as much as I want, even though we had a dial-up connection back then (not the kind where you can’t phone and go online at the same time). He said that, if the bill got too expensive, we’d get broadband. Then when the bill did get to over €300 over the summer, it turned out broadband wasn’t available at our house. After a few months of my parents trying to restrict my Internet access and my trying to evade said restrictions, we eventually got cable.

I got my first online diary that fall of 2002. It was on DiaryLand if I remember correctly, though I often switched between DiaryLand, Diary-X, Teen Open Diary and whatever else was available. The only service I never actively used, was Xanga. I also had a Dutch online diary.

The worst mistake I made, looking back, was not taking care of other people’s privacy. I not only wrote out every argument I’d had with my parents in detail, but also referred to other people, such as my teachers, by their real names. One teacher in particular had a rather unusual last name and at one point was googling her name for genealogy purposes. Not surprisingly, she stumbled upon my Dutch diary. Though I (interestingly) had used a nickname there, she quickly found out it was me. She personally didn’t mind, but did caution me that others might.

What mistakes did you make in your early days online?

Today Is Tuesday, June 8

Posted on by Astrid

I really want to write, but I’m feeling pretty uninspired. I already looked through my collections of journaling prompts, of which I have many. However, even though a few prompts spoke to me, I just couldn’t get myself to put fingers to keyboard and actually write. Until now, that is. Instead of writing an actually meaningful post, I’m just going to freewrite.

Today I got my original Braille display, the one with the water damage, back. The technician also explained why this model can’t handle even a little water on it even though the old model, the one that got the cup of tea over it seven years ago, could. This model’s Braille cells are somehow covered, so if water enters them, there’s no way it’ll get out. He didn’t explain the point of creating cells like this, I mean, what would make them better than cells that haven’t been covered like the ones in the old model. I think it might even be an effort to make the Braille displays not last as long, but of course the technician wouldn’t say so.

In the afternoon, my mother-in-law visited me. We drove to a relatively nearby forest and went for a short walk. Then we had coffee and apple pie. We also drove by a supermarket, where I got blueberries and fruit gums. The fruit gums, I already consumed.

Both my mother-in-law and my husband have been asking me what I want for my birthday, which is on the 27th. I have asked my parents to order from a specific jewelry-making store which is local to them. For my husband and mother-in-law, I really don’t know what to ask for. I mean, I’ve been tempted to ask for the interactive cat my mother-in-law originally wanted to buy me last year. Then again, that thing is over a hundred euros.

In the evening, I did a little more walking and had coffee. I more than reached my water intake goal for the day. I use the Water Reminder app on my iPhone again. It’s a pretty good way of keeping track of my fluid intake, as it also allows me to track other beverages. And just so you know, yes, it actually takes away water when you drink alcohol. That makes me believe its calculation of amount of water in beverages is pretty accurate.

I also read my Bible again. I decided to pick it up in Genesis where I left off when starting to read Daniel on Sunday. I don’t expect to be reading all the boring Old Testament stuff, but for now I’m at least sticking to a Bible reading habit.

And a writing habit. See? I can really make myself create a blog post if I just want it badly enough. And I do, since WordPress is now keeping track of my blogging streaks. Yay me!

Gratitude List (May 28, 2021) #TToT

Posted on by Astrid

It’s really been forever since I last did a gratitude post. I’m not too happy at the moment, but maybe doing one will cheer me up. As usual, I’m joining in with Ten Things of Thankful (#TToT.

1. I am grateful for a sunny and warm day today. After weeks and weeks of cold and rainy weather, the sun is finally shining and the temperature rose to 18°C this afternoon. The weekend and next week are supposed to be even better.

2. I am grateful my Braille display will be fixed and hopeful the company won’t claim it’s my fault that it’s broken yet again. Like I said before, they originally claimed I had caused my original Braille display water damage, but they couldn’t prove it, since it’d been lying in their storage for a year. Now this one has similar issues to the other one, but again I have no recollection of ever getting water on it. For now, they are saying there is no reason to think it’s water damage this time around. The problem if it were wouldn’t even have been the one-time expense of getting it fixed (€1500), but the precise fact that I have no recollection of ever getting water on my Braille display and so I can’t prevent the same problem happening again. For now though, I am thankful it will be fixed.

3. I am grateful for my staff, who help me through the hard times I’m going through lately. I experience a lot of triggers and resulting flashbacks. Thankfully, my staff keep reassuring me and all my inner parts, that we’re safe now.

4. I am grateful for my nurse practitioner and community psychiatric nurse. They both help me too.

5. I am grateful for wraps for lunch today.

6. I am grateful for a shopping trip to get some candy and fruit this afternoon.

7. I am grateful for a private WordPress site that I can use as my diary. I still like the iPhone app Day One too, but prefer to type my entries on my computer.

8. I am grateful for horses. Yesterday, some other care facility clients apparently went riding in some type of carriage. While the woman guiding the horses was preparing the wagon, my day activities staff asked whether I could pet the horses and I could! The littles had so much fun!

9. I am grateful for beautiful and nice-smelling flowers.

10. I am grateful for the myNoise and Spotify apps on my iPhone and the ability to listen to beautiful soundscapes and all kinds of music using my AirPods.

Okay, this was easier than I thought it would be. Thank you for reading.

What are you grateful for?

Powerful

Posted on by Astrid

My Braille display, which I use to access my computer and smartphone as I am blind, is giving me problems again. In fact, it’s been acting up ever since only a few days after it got fixed three weeks ago, but I hadn’t wanted to disclose this on my blog. After all, the Braille display costs several thousands of euros and the company had originally claimed that home contents insurance (which I don’t have at this point) should pay for the repair, so I had been wanting to keep this private while investigating my options. Now though, the thing has been acting up so badly that it caused me to spiral into a parasuicidal crisis. This may seem odd, technology being so powerful as to get me to lose my sanity. Thankfully, my husband calmed me down!

This post was written for Six Sentence Story Thursday, for which the prompt today was “Powerful”. It was also inspired by Abbie’s contribution to the blog hop.

#WeekendCoffeeShare (May 8, 2021)

Posted on by Astrid

Hi and welcome to my #WeekendCoffeeShare post for this week. Grab a cup of coffee, be it Senseo or traditionally-made, a glass of your favorite soft drink or a glass of water and let’s catch up.

If we were having coffee, I’d share that the weather here is still all over the place and mostly not in a good way. It’s mostly rather chilly for the time of year and has been raining everyday for the past week. Tomorrow, the temperature’s supposed to rise to a whopping 25°C, but we’re still supposed to get rain and of course thunderstorms. Not fun!

If we were having coffee, I would tell you that, despite the weather, I still managed to get in an average of about 8000 steps each day. I’m still experiencing foot pain when wearing my AFO for longer than say fifteen minutes at a time, but it’s okay if I don’t go for long walks.

If we were having coffee, I would share that I am so happy that my Braille display got fixed. Like I said yesterday, it was quite the ordeal.

If we were having coffee, I’d also share that the construction crew finally came by my and my husband’s house in Lobith to get us a new front door and backdoor. They still need to fix one window, which has a crack in it. Thankfully, they weren’t as stubborn as the Braille display company, so my husband won’t have to pay for the broken window.

If we were having coffee, I’d tell you about the talk I had with my facility’s behavior specialist on Thursday. I was able to express my continuing feelings of not belonging in my current care home. This, for clarity’s sake, has nothing to do with the care home itself or the way the staff treat me, which is great. I am pretty sure it’s my search for some ideal that really doesn’t exist. After all, wherever I go, I always take my insecure self with me.

If we were having coffee, I’d tell you about the online cerebral palsy (CP) meeting I had this morning. It was a regional meeting, because in the future CP Netherlands hopes to organize them in real life. It was quite an interesting meeting. Having recently become more and more aware of my CP, I was able to feel validated by people’s experiences of the long-term effects of this disability.

I also signed up for an online workshop on aging with CP that’s being held next month. I am still considering whether to sign up for the workshop on development of people with CP from birth to age 35, as it sounds interesting despite the fact that I’m nearly 35 myself.

If we were having coffee, lastly I’d share that my husband and I are planning on having lunch tomorrow. As usual, we’re going to get a takeout lunch at Subway.

How have you been?

Braille Display #WotW

Posted on by Astrid

Hi all! What a week it’s been! From frustration to complete panic and back to relief, all because of my Braille display. That’s my word of the week for this week. Let me share why.

Like I’ve shared a couple of times before, I’ve had problems with my current Braille display ever since I first got it two years ago. Dots kept getting stuck, leading to errors in my reading. After all, Braille characters are comprised of at most eight (for computer Braille) dots in a rectangular cell. When, say, dot four is stuck, an A reads like a C or vice versa. It’s workable as long as it’s just one or two dots that are stuck out of the forty times eight dots on my forty-cell Braille display. However, at one point several dots in one cell were stuck, meaning that one was essentially useless.

After a technician had come out to repair my Braille display several times, he sent it back to the manufacturer for checking out in June of last year. I got a replacement on loan until it’d been fixed, which never happened.

Fast forward to last Sunday. When not one, but two or three dots were stuck on my Braille display, I decided I’d had enough and wanted it fixed. Either that or I wanted the original one back. I E-mailed the company, also asking what I could do to prevent dots getting stuck again. On Monday, I got a relatively generic response: other than not touching my Braille display with wet or dirty hands, there was nothing I could do. Well, I always make sure my hands are clean and dry before touching my Braille display. On Tuesday, the company’s repair planning called me to schedule an appt to get the thing repaired today.

Then on Wednesday, the company’s business developer called me to inform me that they’d found that my original Braille display – remember, the one that was with them or the manufacturer for a year -, had suffered water damage. All 40 cells needed replacing at a cost of €1500. Health insurance wouldn’t pay for this. Maybe home insurance would or I’d have to pay out-of-pocket.

I decided that, if I had to spend €1500 anyway, I’d be looking at getting another brand of Braille display, since I don’t trust my current one. I mean, I always handle my Braille display with care and not just the original one, but the replacement one too had problems. I actually got a little excited looking at what’s available, but at the same time quite panicked at the prospect of having to spend at least €1500 in one go. I’ve literally never made purchases over €1000.

Yesterday evening, I got an E-mail confirming the appt for repair of the replacement Braille display. I panicked again, since what if they decided I’d somehow ruined this one too or I got a huge bill after it got repaired?

Today, my husband called the business developer. He had seen the photos of the so-called water-damaged original Braille display, which the guy argued proved that I had somehow ruined it. Well, my husband argued that, since they’d had it for at least as long as I had originally had it, there was no way to prove it didn’t get water-damaged or anything while with them. Since I have no recollection of it getting wet at all, there is no way home insurance is going to cover a repair. In fact, they’d too argue that there’s no way the company can prove it isn’t their fault. The bottom line is I can keep the replacement Braille display, it would get repaired and I won’t have to pay. The technician who came out to replace the cells that had damaged dots, confirmed that it hadn’t been anything I had done causing this one to malfunction. Now, at least until/unless more dots get stuck on this one, I’m so relieved and happy! To be honest though, I’m so used to dots being stuck that I keep checking I’m reading my Braille display correctly. That’s okay though. Now let’s think of what I can spend those €1500 on. No, not really.

Word of the Week linky

#WeekendCoffeeShare (February 27, 2021)

Posted on by Astrid

Hi all on this cold but sunny Saturday. I’ve been wanting to write a lot lately, but just couldn’t find the time. Today I’m summarizing what’s been going on in my life in a #WeekendCoffeeShare post. I’ve just had dinner. We had French fries and some might still be left over for you. Otherwise, there’ll be ice cream in the freezer. We should also have various soft drinks in the fridge and I can make you a coffee if you want it. Let’s catch up.

If we were having coffee, I would tell you that I spent the entire weekend reading. That’s why I didn’t write a post yesterday. I loved the book I was reading, Cathy Glass’ latest foster care memoir. I’ll post a review soon.

If we were having coffee, I would tell you that the weather was incredible over the past week. We had temperatures of about 18 degrees Celsius on Wednesday. Today, like I said, is colder and the temperature even dropped to slightly below freezing last night.

If we were having coffee, I would tell you that overall, I’m doing pretty well. Early in the week, I was struggling majorly with anxiety. That has mostly gone now and thankfully hasn’t, like some other times, made way for depression. I’m feeling pretty upbeat.

That being said, I’d also share that I’m a little sad, because one of my favorite staff is leaving for the care home next door to mine. Tomorrow will be her last shift in my home. This is the reason we had fries and ice cream for dinner today.

If we were having coffee, I would tell you that my new essential oils, that I’d ordered on Tuesday, arrived on Thursday. I was very frustrated at first, because on Wednesday the delivery service reported that they’d tried but been unable to deliver my package that day. They didn’t state a reason and I wasn’t sure either, since there’s always someone home here now that the day center is closed. I checked my details and noticed my house number had been put in twice. I wasn’t sure they could’ve misread it and tried to deliver my package elsewhere.

Thankfully, on Thursday, while on my afternoon walk, my staff and I ran into the delivery guy and my staff asked him whether he had a package for my address. He did. The staff carried my package, which thankfully wasn’t heavy, all the way on our walk.

I am totally in love with my new oils. The vetiver one came in a bottle with a large pipette snout, so it doesn’t fit into my essential oil container. That’s alright, as now I didn’t have to remove my field mint EO from the container to make space. My other oils fit in perfectly and I love the smell of the new ones, cardamom and grapefruit.

If we were having coffee, I’d tell you that my husband is busy with the trailer for his car that he bought two weeks ago. He isn’t coming to see me this weekend. That’s okay. Of course, I miss him, but am so glad we have phone and text contact.

If we were having coffee, lastly I’d moan about my Braille display. I don’t remember whether I shared about my old one going into repair. Which old one, you might ask, as my current one is the third in a row. The first had dots that were stuck at least half a dozen times in the first nine months and eventually got sent back to the manufacturer. Well, the replacement had the same problem after about six months of using it too. I waited some months before reporting it, but eventually got sick of it. It is currently in repair. Now the replacement’s replacement is starting to act up too. It sucks and I’m starting to think I do something to make them all break, but I don’t know what. The thing is, the Braille display I had before this model was fine for five years even though I’d spilled tea over it when it was only a few weeks old and had dropped it a few times. And just in case the Braille display company’s representatives read this and are assuming I’m treating this model the same, I’m not. I never drink or eat in front of my Braille display and haven’t dropped it either. Quite frankly, I’m tempted to ask the company to replace the dots on my old model, which have worn out a little from use, and have me use that one innstead of this model all made on a Monday morning when the manufacturers were still half asleep.

What’s been going on in your life?

An Intense Monday

Posted on by Astrid

I’m not really sure what I want to write today. I started writing this blog post several times, only to delete it again halfway through. I intended on doing a food diary, then realized I wasn’t intending on sharing it here. (I did write a food log in Day One, my diary app, for today.) I then tried to do a more general health and wellness log, only to realize these don’t make sense if I don’t do them regularly. Then I started writing a post about today.

Today was, indeed, rather intense. Not really because of the food journal. I did okay on that one and it helped me make some healthy choices without becoming obsessive about it.

In the morning, a staff made a phone call to the assistive tech company. Yeah, my Braille display is once again broken, for the fifth or so time in eighteen months. I can still work around all the stuck dots, but I really want it repaired.

Then in the afternoon, I had an appt with my nurse practitioner. I can’t remember exactly what we talked about. I mean, yes, he shared about the bus metaphor. This is a metaphor in which a person is like a bus driver and all their thoughts etc. are passengers on the bus. I had already commented last time that my bus has multiple drivers, in that, if I hear a voice commanding me to do something, that voice (ie. alter) can take over the wheel too. Now I am hesitant to use words like “alter”, because I know my nurse practitioner doesn’t believe I have a dissociative disorder. This is my blog though so I can do with it what I want.

Today we somehow got talking about this metaphor in relation to emotions. Sometimes, you see, I get an emotion or urge or whatever and have no clue why. Honestly I can’t remember how this relates to the bus metaphor, but oh well. Oh yes, I told my nurse practitioner that Astrid is the bus with all its passengers and drivers. The body, then, is the bus.

Later, in the evening, we had an emotional reaction to a minor situation. After I calmed down, I talked it over with the staff who’d seen me have the reaction and it turned out I had no memory of it. I can now sort of see how I probably had that reaction, but I still can’t remember it as my own reaction.

This makes me feel kind of freaked out. I know that amnesia is part of dissociation, but didn’t we agree that I don’t have a dissociative disorder? Besides, whenever I do claim to have an undiagnosed dissociative disorder, it’s OSDD1B, which means having alters without significant amnesia.

I knew from previous experiences that I do experience what’s called emotional amnesia, where I can remember something but not the feels that go with it. The incident of amnesia that got my former psychologist, back in 2010, to suspect DID, was, in fact, emotional amnesia only. I know this because I claimed that I’d not remembered what went on in our session, but I clearly must’ve remembered something as otherwise I wouldn’t have known to tell her.

I know I don’t need a diagnosis right now. I can function okay’ish most of the time. Or can I? After all, when I’m functioning, I can’t remember that sometimes I am not and when I’m in severe distress, I can’t remember what it’s like to function normally. Or maybe I can, on some level. This is all so confusing.