A Rather Frustrating Monday

Posted on by Astrid

It’s past 10:30PM and I’m still wide awake. I just took a PRN quetiapine. My Apple Watch and the staff’s blood pressure cuff are telling me I should be super relaxed, in that my heartrate is 67 even when sitting upright. That’s rather low for me, but not worryingly low or so the staff say. Oh yes, I know normal resting heartrate is between 60 and 100, but mine is usually closer to 100. Oh well.

Today was quite intense, honestly. In the morning, the manager came by to talk to me about my meeting with the behavior specialist last week. She also, of course, told me a new staff would be starting his orienting shifts here and he’d start right this evening. Of course, like all new staff who’ve been hired over the past six months, the first part of the home he’s being introduced to is mine. Can you read my sarcasm? Well, it should be there. I’m rather annoyed at the fact that every new staff starts working on my side of the home rather than the other one. I know it’s probably because one of the clients on the other side gets really irritable when introduced to new staff. Well, maybe I need to show a little more of my irritable side.

Then, the temping agency housekeeper came to clean my room. She left my bathroom in a horribly wet state and left the tap on its hottest setting. Thankfully, that setting is not hot enough to actually cause burns, but it did hurt a little when I tried to wash my hands.

Once my day activities started, I went for a walk. My cardio fitness level was once again low, but it hardly bothers me anymore.

In the afternoon, my staff and I drove into town so I could buy a new pair of shorts for when I go on the elliptical or ride the side-by-side bike. The old pair pretty much falls off my butt. I also bought socks and some presents for my oldest niece, who will be three on Saturday.

In the evening, I went for a short walk with the new student staff, taking his camera and tripod with us to snap some pictures. I cannot yet show them, as I haven’t yet figured out which ones show what.

Then, I wanted to go on the side-by-side bike again, but got really frustrated trying to fasten the belts around my feet. They need to be really tight or my feet, particularly my spastic left foot, will fall off the pedals. That didn’t work out and I got really overloaded, so had a short meltdown.

Later in the evening, when I was alone, I started fretting about my health. That probably caused me to feel spacey. Now that I’ve processed all this in this post, I feel slightly better. It might be the quetiapine is working as well.

Negative Feedback: How I Cope As a Creative #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter N post in the #AtoZChallenge. I am feeling very uninspired today and almost gave up on writing this post, as my headphones decided to no longer work. Yes, those headphones I got for €239 a few weeks ago. The cable connection to my computer still works though, so I really have no excuse.

Today, I initially wanted to share some resources for newbie crafters, but that’d get rather boring. Instead, I’m going to share how I deal with negative feedback as a creative. This may get rather, well, negative, but oh well.

After all, I’m not thick-skinned at all. Like I said when writing about my creative frustrations and in other posts too, I get easily discouraged. As a result, my way of coping with negative feedback is usually to give up a craft entirely.

I didn’t do this when starting out with polymer clay. I mean, I did get some rather blunt comments early on, but I could see they weren’t meant to degrade my efforts or my ability to ever learn at all. It may’ve been because I had used polymer clay for a short time years before and, as a result, knew that it isn’t an inaccessible craft for a blind person.

It was different with card making. With that, I got hurt very easily when getting kicked out of groups for flaking out of my obligations for swaps etc. Still, it wasn’t until someone flat out told me that my work didn’t meet her expectations even though she knew that I was blind, that I decided to give up. Card making is not altogether inaccessible for blind people, but it can be very hard when you want to follow the traditional “rules”.

Then, with macrame, people doubted my ability to be able to learn the craft as soon as they found out I’m blind (and have mild cerebral palsy). With that, I decided, probably sensibly so, not to invest in a lot of supplies before I’d really decided whether I could master the craft. I so far only have one color of cheap macrame cord and a few supplies. I am so happy about this, since, with card making, I may’ve spent as much as €1000 without ever being remotely proficient at the craft.

Now that I’m okay as a beginner polymer clay artist, I still do get negative feedback at times. I can handle it when my staff point it out when I do something that I need to retry it as it’s not looking good. I also don’t mind people reacting badly to my finished projects. I remember once, when I’d published a polymer clay shell with a bit of a fleshy color to my Facebook wall, someone saying they were freaking out thinking it was a body part. That made me feel off for a bit, but I was quickly reassured by my staff as well as my other Facebook followers that it looked like a shell and I definitely hadn’t posted NSFW content or something.

On my blog, I get the occasional negative comment. Usually, it’s based on a misunderstanding and we’re easily able to resolve the issue. I deal with clear trolls with a direct hit to the spam folder. Then again, these are very rare.

Frustrations in My Creative Work #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter F post in the #AtoZChallenge. I didn’t change my mind, so today I’m writing about the things that frustrate me about being a creative.

The first thing that frustrates me, is the learning curve. This may contradict what I wrote yesterday about enjoying learning about other people’s creative processes. However, what I mean is the fact that it takes a lot of practice before I become even remotely proficient at a skill. This has been especially true for my crafty endeavors and less so in the area of my writing. I am both a bit of a perfectionist and quite impatient, like I said in my letter A post. This means that, if I had it my way, I’d be able to create perfect polymer clay sculptures right away rather than now, after nine months of practice, still barely having moved beyond the absolute beginner stage.

The second thing that frustrates me, is the comparison trap. This is related to the first and may once again contradict the point I made yesterday about loving to share my work. Indeed, I love to share my work, but knowing how others have moved far further along in their journey towards perfection within a certain timeframe than I have, can be quite frustrating.

Similarly, negative feedback can be quite frustrating to me. I am not that thick-skinned, to be honest and get easily discouraged.

Lastly, it is particularly frustrating especially with my polymer clay when I’ve worked on a project for a while and then once it comes out of the oven, it isn’t as I’d expected. Whether that is due to some mistake I made or some problem while baking – which I consider largely out of my control even though I really know it isn’t -, doesn’t really matter to me.

How I Deal With Anger

Posted on by Astrid

In today’s Sunday Poser, Sadje asks us what we do when we get angry. She seems to mean this question in two ways: firstly, how we express our anger and secondly, how we cope with it and calm down again.

I have always been relatively quick to anger. Particularly, my tolerance for frustration and distress is very low and I tend to express this as anger. During such episodes of distress, I may scream, yell, slam doors, etc. Over the past year, I’ve even occasionally shown slight physical aggression towards people.

To cope with this type of anger, my best strategy is to enlist the help of others to get me to think through whatever was causing me frustration or distress and/or to help me solve the problem. Usually, temporarily removing myself from the situation might help a tiny bit, but it will not help in the long run, as it will not get rid of the source of frustration.

Then there are these situations in which I’m angry because someone is being unjust towards me. When I am angry at being treated unjustly, similarly, removing myself will help for a while, but not in the long run. Assertiveness can help in that it allows me to properly voice my needs, wants and rights. I am still working on this, in that I tend too often to avoid properly advocating for myself and instead resort to less helpful ways of making it clear that I’m struggling.

When there is nothing I can do about the anger or its source at a given moment, what helps me is to safely express it, such as by hitting a pillow. I also used to sing certain songs that spoke to me. For example, there is a Dutch song called “Laat me” (“Leave me”) that I would always sing at music club when I was irritated at my treatment team in the mental hospital back in the early years. Now, hitting a pillow and screaming has the same effect.

After I recover from my anger outbursts, I do like to talk through what was causing them, whether I can solve the problem at hand or not. I, after all, find that other emotions are often masked as anger, such as shame, sadness or fear. By talking through my anger after safely having expressed it, I can often get to the bottom of what is troubling me.

How do you cope with anger?

How I Cope With Stress

Posted on by Astrid

Today in her Sunday Poser, Sadje asks how we cope with stress. We all face stress in our lives, yes, even the most laid-back people out there. Maybe they’ve just found better ways of coping with it.

I for one find that a major stressor for me is frustration with my disabilities. For this reason, it may be that my parents thought I was very laid-back until I became aware of my blindness when I was around seven. Now, frustration in general, such as with failing technology, can set me off, but really so can frustrations when trying to accomplish something.

So how do I cope? Over the years, I’ve found several ways to ride the waves of frustration. Dialectical behavior therapy and in particular the ACCEPTS skill set has helped.

I find that distracting myself by focusing on something other than the frustrating situation or thing helps. This is hard with my autistic tendency to perseverate. For example, when I get frustrated with a polymer clay project, it’s currently hard to let go and focus on something else. But it is necessary. This is why my staff encourage me to take regular breaks and also do other activities, such as walking, besides polymer clay.

I also find that talking through my problems sometimes helps. Then, I may realize I’m catastrophizing or using other cognitive distortions. Often though, to get rid of a stressor, I need someone to take over part of the problem, or all of it, from me. After all, my problem-solving skills are practically nonexistent.

Other things I do to cope with stress include finding relaxing activities, such as diffusing an essential oil blend or lying under my weighted blanket. Lastly, writing about my stressors, problems or frustrations also helps.

What helps you cope with stress?

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?

I Want to Feel Better #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

I want to feel better. Or maybe I need to feel better. No, that’s not correct. Feeling normal mentally may be a want, but I cannot need to feel it everyday.

I’ve been really in a depressed funk over the past week. Maybe, like I said on Thursday, it’s just that I was feeling so well over the past six weeks or so. Now that it’s passed, at least for now, I feel frustrated and depressed. I feel tired too. I’ve been lying in bed most of the morning and part of the afternoon today.

So what am I going to do about it? I’m writing now at least. That’s better than lying in bed. I still at least have some writing mojo left. In this sense, it helps that this writing exercise is stream of consciousness so that I don’t need to worry about structure.

What else can I do? I could be forcing myself to stay out of bed, but this is hard especially on weekends. So I’m not doing that.

I will be going for daily walks unless the staff have no time to take me on a walk all day (which is rare). Then, I will dance in my room for at least 15 minutes and/or go on the elliptical.

I will continue to write everyday. If it isn’t “blog-worthy”, so be it, but I’ll at least try.

I will meditate. It doesn’t need to be a long guided meditation or anything. A few minutes is enough. But I’ll make sure to incorporate mindfulness into my day.

Hopefully, committing to these will help me keep depression at bay. And if it doesn’t, then at least I’ll know that I’ve tried.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “want”.

#WeekendCoffeeShare (April 26, 2020)

Posted on by Astrid

Hi all, how are you all doing on this fine Sunday evening? I just had a drink of my favorite soft drink, called Dubbelfrisss. I had my favorite flavor too, apple and peach. I also had some chips. If you’d still like a cup of coffee, I’m sure I can make some for you. I’m joining in with #WeekendCoffeeShare.

If we were having coffee, I would tell those of you who follow me from the coffee share linky that I’m rather active in the blogging department. I’m still going strong with the #AtoZChallenge. I in fact still have a long list of things I want to blog about even after this challenge is over. I really hope the writing juices keep flowing.

I did downgrade my WordPress plan from Premium to Personal. I, not being very tech savvy, can’t use most Premium features anyway and I don’t need the upload space, as I hardly ever post images. The only thing I used from the Premium plan, was Google Analytics, which was rather depressing.

Also in the tech department, I’d like to tell you that I’ve been struggling for weeks to get an eHealth app called Minddistrict working. Somehow, the E-mail that should have been sent to me to sign up, didn’t reach me. My CPN from mental health contacted some guy in IT about it, who replied rather bluntly that his role is not to teach clients to look in their spam folder. Well, if that had been the problem, my CPN could have told me. I’m not stupid! I eventually contacted my hosting provider, who want to look into it but need the headers of the bounce message Minddistrict should have received. My hosting provider was trying to be very helpful, but still the whole thing frustrates me to no end.

If we were having coffee, I would tell you that I reached my 10K steps three out of the seven days of this week. On two more days, I got over 8K steps.

I also got weighed in on Thursday. I didn’t use the same scale I normally use, because that’s at the day center. As such, my results may not be accurate. However, if they are, I lost over 1kg. According to this scale, I just about crossed the line back from obesity to overweight. Yay!

If we were having coffee, I would share that the client who came to our home as an emergency placement two weeks ago, left again yesterday to go to a more suitable home.

If we were having coffee, I would share that I’ve been exploring personality traits a bit more. Like, I’ve joined some Facebook groups for what I think is my MBTI personality type. Most other people see me as INTJ, but I honestly think I’m more INFJ, as the feeler/thinker dichotomy is based on how you make decisions. Note that I learned in psychology class in college that one changes personality type about every month if dichotomous scales are used. I’m a clear introvert, but have no strong preference on all three other determiners. I’ve heard cognitive functions can make the MBTI more reliable, but I find most tests that include that pretty inaccessible.

I also have been exploring the concepts of HSP and empath. I read Elaine Aron’s book The Highly Sensitive Person in Dutch back in like 2006. I downloaded the 2013 English edition on Bookshare a few days ago and got some books by Dr. Judith Orloff too. It does remind me that, when the Dutch translation of one of Aron’s books first came out in 2004, my father read me a skeptical article in the newspaper about everyone needing labels nowadays. He said I was an “asparagus addict”, making a bad pun on the Dutch word for asparagus being similar to Asperger. That got me to stop self-identifying as autistic. Well, I guess I don’t care now.

What have you been up to lately?

Writer’s Workshop: If I Could Change One Thing About Myself

Posted on by Astrid

Mama Kat in one of her prompts for this week asks us what one thing we would change about ourselves if we could. She also asks us to think on why it can’t be changed.

This is pretty much a no-brainer to me. If there’s one thing I could pick to change about myself, it would be to widen my window of tolerance. The window of tolerance is the window at which point someone is stimulated enough that they aren’t bored too much, but not so much that they are overloaded. Each individual’s window of tolerance is different. Some people thrive on challenging activities and exciting stimuli. Others can barely handle any sensory or cognitive demands. I belong to the latter category.

If I’m correct, the window of tolerance also refers to the ability to tolerate distress or frustration. My distress tolerance is and has always been extremely poor.

So why can’t it be changed? Well, I tried. Ever since I was a little child, psychologists have recommended I work on distress tolerance. Now I must say I really wasn’t aware of the problem at all until I was about eleven, but even when I was, I had no idea how to heighten my distress tolerance.

My tolerance for sensory and cognitive demands was manageable up until I suffered autistic burnout at age 21. I mean, I was in classrooms with 30+ students in them, doing my schoolwork at a high level high school. Ever since my burnout though, I’ve hardly been able to function in group settings without getting overloaded. I also can’t seem to handle any sort of pressure.

In 2017, when I was being kicked out of the psychiatric hospital, it was recommended that I do dialectical behavior therapy (DBT). One of the modules of DBT is distress tolerance. The community psychiatric nurse (CPN) who started DBT with me, even wrote increasing my frustration tolerance as a treatment goal without my having asked her to. I didn’t see how I could work on this. After all, seeing this goal written on my treatment plan already created such immense pressure that I felt overloaded without even trying to work on the goal.

I know I have a bit of an external locus of control. This seems to be tied in with poor distress tolerance. I mean, it isn’t that I genuinely think the world owes me a sensory-friendly, low-demand environment. However, I can’t see how I can work on changing my ability to handle sensory stimuli, demands and distress.

Mama’s Losin’ It