Currently (July 2021)

Posted on by Astrid

I usually don’t participate in the Currently linkup, in part because the prompts don’t always inspire me and in part because the posting day coincides with the Insecure Writer’s Support Group. I still follow Anne’s blog in my feed reader though and today, I decided to check out her post. It’s quite an easy one this month, so here goes.

Eating

Way too much. When I would initially be prescribed my currently latest medication, topiramate, the psychiatrist told me that it may cause me a decreased appetite. So far, not so. It’s not a problem though, since, even though I’m overweight, my weight is stable.

Today, my day activities staff took me to the local marketplace and we bought fish and chicken wings for lunch and I bought a giant waffle called “stroopwafel”.

Now in case you’re thinking I’m chronically overeating, I normally eat a pretty balanced diet.

Feeling

Okay’ish. I’ve had a few rough weeks, as regular readers of my blog will know. However, I still find moments of joy, particularly when I’m crafting.

Going

To Lobith. For those visiting from the linkup, I live in a care facility in Raalte, Netherlands. My husband lives in Lobith, about a ninety-minute drive away. I normally go to Lobith about twice a month, but I went there both last weekend and the weekend before for my birthday celebrations.

Ordering

Most recently, some jewelry-making supplies. However, I already have my eyes on a number of relatively affordable essential oils too. I mean, oils that would cost over €50 for a 10ml bottle normally but I can get for €20 at some stores apparently. Think Roman chamomile. I know, it’s probably not the best quality, but my wallet has a will of its own. I need to restock my sweet almond oil too, as I just used most of what I had left for a massage oil yesterday.

Realizing

That I may need to stop evaluating my life and start living. This is sort of the take-home message I got from my psychiatric nurse practitioner at my last appointment on Monday. I was talking about possibly wanting to find myself another care home and compulsively looking for it. I mean, checking out care agencies’ websites on a daily basis for suitable homes. This really isn’t helping, since even if I need or want to leave my current placement, I’ll need guidance on finding myself another place to live. As my nurse practitioner said, I’m evaluating my life each day again rather than seeing each day as just the day it is.

Unfortunately, part of me is feeling as though his message means I need to accept a rather difficult living situation just because it isn’t time to evaluate yet. I can see his point about not checking out care agency websites daily, but the compulsion is also hard to break, as this is what I’ve been doing pretty much my entire adult life. For those not aware: I lived in one temporary placement or another from age nineteen until I moved to the current care facility in 2019. It’s only natural that I cannot believe that this is where I can stay.

What’s up with you?

#IWSG: Quit Writing?

Posted on by Astrid

IWSG

Hi everyone. It’s the first Wednesday of the month and this means it’s time for the Insecure Writer’s Support Group (#IWSG) to meet again. I’m more than happy to report that I didn’t get booted for my flaky post last month.

I’m feeling quite motivated to write as of late. It’s still mostly regular posts on this blog, but that’s okay. I know, I know, I resolve each month to expand my writing horizons by doing more poetry and fiction writing. I’m also resolving this time to set some time aside for a daily freewriting session in the app Day One. My yearly subscription payment is due at the end of the month and I haven’t made use of it in a while, so now’s the time to get back into things.

Now on to this month’s optional question: what would make you quit writing? Seriously? I guess my death or the loss of my hand function, though if I lost the ability to type, I could possibly still dictate my writings. That being said, I’ve always said that loss of hand and particularly finger function would majorly impair my quality of life, since it’d not just mean an inability to type, but an inability to read Braille as well.

I have had times when I’ve taken a break from blogging and occasionally even writing in general. The longest I’ve gone without blogging since I got an Internet connection has been six months in like 2012. Since I started this blog nearly three years ago, not a week has gone by that I didn’t write at least one blog post.

Even before I had a blog, I had a diary and wrote tons of short stories and attempts at young adult novels. I honestly don’t think that, even if I ever were to stop blogging, I’d really stop writing for myself.

What would make you quit writing?

Independence

Posted on by Astrid

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

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

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

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

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

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

What is important to you where it comes to independence?

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

Historical Events

Posted on by Astrid

Today, in the journaling app Day One, the daily prompt was to write about the historical events you remember. I used to be a big news and politics junkie as an older child and teen, so I remember quite a few events.

I was born in 1986, so technically might’ve remembered the fall of the Berlin wall in 1989, but I didn’t. In fact, the first important historical event I remember was the Gulf War of 1991. At the time, I listened to the radio and heard about it, but erroneously thought that Iran, Iraq and Kuwait made up Ukraine. I don’t know what news event there was about Ukraine at the time, possibly the fifth anniversary of the Chernobyl nuclear disaster.

When I was nearly eight, I remember my parents taking me to the polling station for the national election in 1994. I remember both of the names of the candidates my parents voted for. I also clearly remember learning about the “purple” government, which meant that the Labor Party and the conservative party VVD were for the first time forming a coalition. Another party, D66, was joining them too and I asked what color they were and why that party’s color wasn’t represented in the mix. My parents explained that mixing too many party colors would make brown and that’d be a Nazi color.

When I became a teen, I got involved even more into politics. I obviously remember 9/11 when I was fifteen and the murder of Pim Fortuyn eight months later. That year’s election, nine days after Fortuyn was killed, was the most memorable election of my life. I remember kind of aggressively persuading my father to vote for the Socialist Party rather than GroenLinks, the leftist party he normally votes for.

During the fall of 2002, I myself joined the Socialist Party. I was a semi-active member in my local affiliate for a while. Still, I gradually lost my interest in politics and important news events. I left the political party in September of 2007, half because I didn’t like its rather undemocratic treatment of its members and half because I was tired of politics.

Since then, I haven’t really been following the news or politics much at all. I do find it intriguing to be a witness to the coronavirus crisis even though I’d rather have gone on like old normal.

As a teen, I wasn’t affected by the impact of important historical events. Like, I always wanted the stock prices on the AEX to be low for some reason I still don’t comprehend. Now, I understand the impact of economic crises more than I did before and it scares me. That’s why I’d rather put my head in the sand and not watch the news.

What historical events do you remember most?

Jewelry-Making #WotW

Posted on by Astrid

Hi everyone. Today I’m once again joining Word of the Week. I already shared some of my experiences from the week with you all on Friday. Today, I want to focus on an important positive aspect of the week: jewelry-making. Like I said last week, I got a lot of supplies from my parents for my birthday. I also bought some new supplies later this week.

The actual jewelry-making process is still sometimes hard for me due to my being blind and having mild cerebral palsy. I am making progress though in figuring out what works for me.

First, on Wednesday, I made a bracelet for my day activities staff. She had her birthday that day so was off, but my assigned support staff from the home came to sub. I did all the threading by myself and tried to tie the knot too.

On Thursday and Friday, I was even busier making jewelry. I made my first necklace in a long time. It didn’t turn out as good as I’d hoped and I don’t have a photo, but it is nice enough.

I also made a football bracelet for a fellow client. I originally wanted to make something in the colors of his favorite club, but I didn’t have red and white beads. Instead, I chose green for the grass and added a football charm. This client has his birthday next month I think, so I already decided to make him something in the club colors then.

Lastly, I enthusiastically decided to make a necklace for my niece. She is 21-months-old and I had no idea what the appropriate age for wearing jewelry is. I also added acrylic charms that I later realized she might pull off and put into her mouth.

I texted my sister and she said two to three years is the recommended age for necklaces. I thought of keeping the necklace for my niece’s birthday, but eventually decided to give it anyway when my sister and her family visited me yesterday. I’m confident my sister will be able to keep it safe until my niece is ready for it.

How would you sum up your week?

Word of the Week linky

Fight for the Light #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Sigh
I fight
For the light
That’s out of sight

Those were the words that popped up into my mind when I read this week’s Stream of Consciousness Saturday prompt. I have absolutely no idea why these words popped up. I guess it’s something to do with the lingering effects of my crisis two weeks ago. I’m still kind of depressed.

However, there’s also some hope shining through in my words. Just because the light is out of sight, doesn’t mean I don’t fight to find it. I am blind, so anything is basically out of sight. Well, not literal light, since I have light perception, albeit only a little bit. Anything else, really, is out of sight for me.

I’ve been pondering object permanence recently. This is the ability to know that, if an object (or person) is out of sight, it is still in existence. This ability is usually acquired at around age eighteen months, so my niece should have it. I rationally do too. Emotionally though, not so much. Though I don’t literally feel that a person who has left my proximity, no longer exists, I usually half-joke that they might just as well be on the North Pole. I wonder whether this struggle with some level of object permanence, could be due to my blindness. I guess not though.

#WeekendCoffeeShare (July 2, 2021)

Posted on by Astrid

Hi everyone! Can you believe the first half of 2021 is over already? I certainly can’t. Today, I’m joining #WeekendCoffeeShare. I just had my afternoon soft drink. If you want one too, I bet there’s still some left in the fridge. I can also make you a Senseo coffee if you want it. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk a little about the weather. It’s okay. Most of the past week, it’s been raining, but I still got time to go outside inbetween rainfalls. It was a bit chilly for summer early in the week. Today and over the weekend, temperatures are supposed to rise to above 20°C.

If we were having coffee, I’d also tell you that most of the pandemic restrictions were lifted last week. They however had only been lifted a few days when news got out about the delta variant of the coronavirus soon becoming dominant. Thankfully, the Netherlands has quite a high vaccination rate, so I have my hopes up we won’t enter a full lockdown come September. After all, my husband and I celebrate our tenth wedding anniversary on September 19 and we really want to finally be able to do something fun.

If we were having coffee, I would share that this week was a truly mixed bag mental health-wise. I did enjoy some activities, like jewelry-making. Last week was my 35th birthday and I got a bunch of supplies as a present. When being engaged in creative activities, I do genuinely feel some level of contentment, if not happiness.

However, there have also been times when I felt incredibly left out and hopeless. Like I said two weeks ago, the manager indicated that I cannot get more support than I’m getting now. Sometimes, I’m okay with this, but at other times, it really frustrates me.

If we were having coffee, I would share that I’ll finally start my topiramate this coming Sunday. The longer it takes, the less hopeful I am that it will actually help. We’ll see though.

If we were having coffee, I’d tell you that, on Wednesday, some type of staff support person came to observe and help the staff with some situations with other clients and with me. She offered some ideas for easing transitions for me. When I’m doing okay or sort of okay, they help, but when I’m very distressed, they don’t. I’m still unsure as to how I can ease the many transitions I face during the day.

If we were having coffee, I’d update you all about my situation with the possible UTI I talked about two weeks ago. Well, it isn’t a UTI. What it is, no-one seems to know or care about. I was told to take naproxen and paracetamol and, when this week I reported that they helped some, was just told to continue taking them for another month. A month! I mean, seriously?! I feel quite frustrated about this.

If we were having coffee, lastly I’d tell you that my sister and her family are visiting me and my husband in Lobith tomorrow. My husband gave me the choice between taking a ParaTransit taxi and him picking me up at 10AM. Since my sister won’t visit till 3PM, I decided to take the taxi. I still have my entire kilometer allowance, since I haven’t felt comfortable yet using the taxi due to COVID-19. My taxi should arrive here in Raalte by 12:30PM. It’s normally a little under a ninety-minute drive to Lobith, but the taxi service might be late and/or combine my ride with someone else’s. However, if I schedule my ride earlier, I won’t be able to have lunch. Fingers crossed the taxi won’t be late.

How have you been?

A Bottle of Hope

Posted on by Astrid

Today, I feel stuck in the twilight zone between good and bad. I’m not feeling as hopeless as I was two weeks ago, but I can’t quite say I’m feeling happy either. I really feel numb. This seems to be the story of my life anyhow. I’ve rarely felt truly happy. Sometimes, I feel dysregulated, desperate, out of control. Some other times, I feel a glimmer of joy. That rarely lasts long. This afternoon, I experienced such a glimmer of joy when making a necklace. Then this evening, I was in a small crisis again.

Still, I have this instinct to survive, to go on. I still keep this bottle of hope that I know at some level will always be available to me. Even at times when I’m most dysregulated, I haven’t intentionally taken steps that would really end my life. I still, deep down, have this will to continue.

Now if only I could put the energy I’m putting into merely keeping hope alive, into actually practising contentment. If only I could pick up that bottle of hope from the shelf, instead of letting it sit there until I (someday, probably never) find the perfect life circumstances. Keeping hope alive is one thing, but living a life of joy and contentment, is quite a bit further up there.

This post was written for Eugi’s Weekly Prompt and Michelle’s July 1 writing prompt

My Declaration for My 36th Year of Life

Posted on by Astrid

Like I mentioned before, I turned 35 on Sunday. A few months back, I had downloaded a birthday journaling tool from the International Association for Journal Writing website. I didn’t really get to journal about any of the prompts in it, but one that stuck out to me is to write your declaration or decision for the upcoming year. It sounds a bit like an affirmation, but I’ll not just repeat it to myself. Rather, in this post, I’ll describe steps I can take to make my declration work.

First, my declaration is: “I will thrive, not just survive.” I will focus the 36th year of my life on improving the quality of my life in some major areas.

I have been debating whether in the long run, I want to stay in my current care home. I’m not yet completely sure, but my aim is to focus on getting as close to my ideal as I can get. However, it may take several more years to find me a more suitable care home, if we can find one at all. This means that I’ll need to focus on improving my quality of life with the resources I have available now.

To make this happen, I’m trying to focus on moving from anxiety and obsessiveness into some level of enjoyment, possibly even happiness. I took the first steps by writing down some things I may want to improve on during my day activities time. For example, I’d like to learn to do some more activities other than blogging and reading by myself, so that when staff leave, I am not completely left out. Today, I tried to work on a bracelet on my own and it worked.

This evening, some kind of staff supporter came round my care home to observe the staff as they care for several clients, including me. She recommended that, when staff leave me, they give me a soft toy to indicate I’m not alone. This also might ease my obsessign over the time they’re going to leave.

I also will be looking into starting some “bigger” project, like a course, again. I don’t think I’ll want to do Open University again, but maybe some hobby-related course.

I’m also thinking of acquiring a small fridge and simple microwave for in my room. That way, I will be able to make soap and body care products in my own room rather than in the overstimulating kitchen, so I should hopefully be able to do more by myself. Then, I’ll hopefully be more satisfied in my activities.

To sum it up, I will try to focus my attention away from ruminating about the past or future and onto enjoying the present. This is probably the hardest part. I am reminded of a Center for Consultation and Expertise case video about a young woman with lots of challenging behavior, for which the staff kept countless checklists of her behaviors etc. They were aiming to manage her behavior, but once they moved away from this and onto looking at how she can have a good day, the behavior also decreased. This might be the case for me too.

Creating Lately: A Bracelet, Body Butter and Lip Scrub

Posted on by Astrid

After a difficult week two weeks ago and lots of frustration at not finding meaning in my activities lately, last week I finally found my creative mojo again. I’ve been pretty busy crafting and DIY’ing over the week.

First, I want to show you all this bracelet I created last Friday. It is simple and I didn’t even do all the work by myself. I mean, I struggled a lot putting the purple beads onto the wire, because my left hand kept spasming and I needed my right hand to keep the wire straight. I tried reversing my hands and letting my staff hold the wire, but it wouldn’t work. Still, I managed to thread some of the purple beads and all of the roses anyway.

I also have been doing a lot of body care creating lately. Last Monday, I made a basic body butter. I used coconut oil, sweet almond oil and cocoa butter. I added in a few drops of coconut fragrance oil for the scent.

I am considering getting a talking kitchen scale, so that I can weigh out my ingredients myself. Not that we used a scale this time – we just guessed how much we’d need.

Lastly, on Thursday, I made a lip scrub. I used coconut oil and cocoa butter for the base and added plain white sugar, honey and vanilla extract. This time, I did most of the measuring myself, even though I still mostly had to guess how much we’d need.

I had made a lip scrub once before, but that one didn’t turn out as thick as we’d wanted. This one is still thinner than most lip balms I’m used to making, but then again it’s a lip scrub, not a lip balm.

I am really loving looking at bath and body product recipes. I am not as good with them yet as I’d like to be, but I like to think I’m improving.

With respect to jewelry, I don’t look up tutorials, as they’re usually far too difficult for me to follow. I just create what I think I can.

What have you been crafting lately?