Things I Am Passionate About

Posted on by Astrid

In today’s Sunday Poser, Sadje asks us what we’re passionate about. Passions can be defined in various ways. They can be things we enjoy doing, but also societal issues we hold strong opinions about. In the below list, I am going to go into both, because I do enjoy talking about the issues I feel strongly about.

1. Writing. My greatest hobby is certainly writing. I’ve always enjoyed it. It is definitely something I do with a passion. I don’t talk about my writing that much though.

2. Crafts. Another of my hobbies is crafting. Unlike writing, I do talk about my crafting a lot. I love to infodump about my latest crafty hobby, be it soap making, polymer clay or whatever.

3. Autistic, mental health and disability activism. Back in the days of my first WordPress blog, most of my posts were opinionated and related to disability, neurodiversity or mental health. I no longer write as much about autistic advocacy, disability rights or the like, but that doesn’t mean I no longer feel passionate about these issues. I have always considered myself a moderate pro-neurodiversity activist, in that, though I side with autistics and the neurodiversity movement, I do feel that most neurotypicals are well-intentioned, though privileged.

4. Calendars and timekeeping. I just need to mention this. I used to love calendar calculation, ie. calculating what date March 25, 1955 was or the like (it was a Friday, by the way). Now, though I’m no longer as interested in or competent at it, I do still feel passionate about issues relating to it. Never tell me that because it was New Year’s yesterday, there were “really two Sundays” this week. No, New Year’s is a bank holiday and this year it was on a Saturday, not a Sunday.

There are probably other things I feel passionate about, but these are the things I can think of right now. What do you feel strongly about or what do you enjoy doing very much?

Gratitude List (January 1, 2022) #TToT

Posted on by Astrid

And here I am with another post. I am determined to start the year off on a positive note even though I’m in a pretty foul mood right now. For this reason, I’m doing a gratitude post. As usual, I’m joining Ten Things of Thankful. Here goes.

1. I am grateful for Psalms 100. This is a psalm of gratitude which was the focus of study in the first day of the YouVersion New Year’s Bible reading plan I started today. It inspired me to do a gratitude list today.

2. I am grateful I could see the fireworks last night. I only saw brief flashes of light, no colors. Officially, real fireworks were banned this year due to COVID-related restrictions, but no-one apparently cared.

3. I am grateful I slept relatively well last night despite the fireworks. I went to bed at 10PM yesterday evening, woke up at midnight and went back to sleep at around 1AM. I got up at 8AM to start the writing ritual I mentioned earlier this afternoon.

4. I am grateful the festivities are over with for a while now. I don’t like the lack of structure. I am also grateful that, this year, it wasn’t too bad, as both Christmas and New Year’s are on weekends.

5. I am grateful we had French fries for dinner yesterday as a New Year’s Eve treat.

6. I am grateful I don’t have any symptoms suggestive of COVID as of yet, after one of my staff tested positive earlier in the week. I decided not to get a lateral flow test yesterday after all.

7. I am grateful the dietitian said I already eat pretty healthily. At least that’s what my assigned staff told me when she’d E-mailed her my current list of things I eat. There are some things I’m not likely willing to change, like my crunchy muesli for breakfast, but some things I definitely am open to suggestions and alternatives about.

8. I am grateful I was able to take a few walks again today. They were short walks, but at least I was able to get outside.

9. I am grateful for all the great blogs I’ve been reading today. I do feel a little disappointed that my posts are getting fewer comments lately than they used to get, but this may be a phase. I do still find joy in writing my blog posts.

10. I am grateful for a ton of blogging-related inspiration. Seriously, how will I find the time to type up all the posts for which I have ideas floating around in my head? I’m so glad though that my creativity is flowing. It isn’t coming out in my polymer clay as much, but it is showing up in the form of writing.

These are seriously all gratefuls from the last 24 hours, with the exception of the French fries, as it’s now 6:30PM and we eat dinner at 5PM. I feel a lot better having jotted down these things I’m thankful for.

What are you grateful for?

My Hopes for 2022

Posted on by Astrid

Hi everyone and a very happy 2022 to you all. Today, like each year, I am sharing some things I hope to achieve in the coming year. I don’t usually call them goals, let alone resolutions. I mean, I used to have a ton of New Year’s resolutions when I was a teen, but these went out the window come Blue Monday. Not that I’d ever heard of that date at the time, but it was still what happened. So, hopes. Here are my hopes for 2022.

1. Get to a less stress-filled (I originally typed “less stress-free”), relatively healthy diet. I already eat relatively healthily at least if I look at my hopes for last year, in that I consistently eat two to three servings of fruit each day. I have also ditched the cookie with my morning coffee. My idea of experimenting with eating bread rather than crunchy muesli for breakfast, went out the window pretty soon and I’m not likely going to give it another try.

That being said, I could still improve on my lunches and make healthier snack choices. Besides, I would really like to stress less about food. For this reason, my staff got in touch with the dietitian, who is going to E-mail her a list of tips and recommendations based on my current food list this coming Tuesday.

2. Remain stable mentally. I am pretty stable mental health-wise already. I hope I will remain relatively sane as I adjust to my increased topiramate and later my decreased aripiprazole in particular. Of course, my aripiprazole taper might not be over with by the end of this year.

3. Keep writing consistently. I started a morning writing ritual today. Officially, I decided on Morning Pages, which dictates you have to write three pages. Then again, this is done by hand and I cannot do this anyway. I’ll be content if I can keep up the writing habit each morning even if I don’t make it to 750 words.

I did pretty great on my blogging over 2021, having written 303 posts over the year. I’d really like to write at least as many posts this year.

I would also like to broaden my horizons where it comes to my writing styles, writing more creatively.

4. Expand my creativity. Particularly, keep up with my creative hobbies. I did quite well on those over the past year too, having rediscovered polymer clay. I’d really like to improve my skill, but, like last year, don’t intend on doing the work all by myself.

I would especially like to discover some things to make myself rather than just copying from YouTube. Of course, I already select my own colors and do some things differently than in the tutorials, but I’d really like to expand on my creativity.

I will continue to do my own version of The Artist’s Way. I mean, I can’t take myself on artist’s dates completely solo because I can’t leave the house independently, but so what? My inner artist wants to be released just as much.

In line with the above, I’ll also experiment more with making my own essential oil blends and such rather than just copying recipes I find online.

5. Get back into the reading groove. This was a massive fail in 2021. One of my bookish resolutions for 2021 was to read 20 books. Well, I didn’t even reach half of that. See, I should’ve called them hopes rather than resolutions. Anyway, I’m not setting a number for myself right now, but I do hope to read some more than I did last year this year.

6. Socialize more, be it online or offline. COVID permitting, I’d like to go to the rescheduled Cerebral Palsy Day in April and to a regional Eye Cafe. This is a meeting of the Eye Association, which I joined in late November. I may also want to join the regional CP Cafe, which is held online on January 8. In addition, I’d really like to join online and hopefully at some point offline meetings related to my hobbies.

7. Deepen my faith. My faith really went in deep ebbs and flows over the past year and that’s not good. Thankfully, I didn’t lose my faith altogether. In fact, I signed up for an introductory course on Christian doctrine at BiblicalTraining.org last Thursday to get myself back in tune with what I believe. I really hope to be working on my relationship with God through Jesus Christ more this year.

What are your hopes for 2022?

Mama’s Losin’ It

Also linking up with #LifeThisWeek.

2021: The Year in Review

Posted on by Astrid

Each year at the end of the year, I look back at the past year and do a review. Today, I’m doing one for 2021.

At the beginning of the year, we were all cautiously optimistic about the vaccine being the ticket out of the coronavirus pandemic. It wasn’t. I got my first shot in early February and my second shot a month later. In early December, I had my (first) booster shot. I’m pretty sure more are still to come.

At the end of 2020, I first had my one-on-one support approved. It took some time to figure out how the staff should best fill in the allocated hours. Initially, the manager wanted my husband to be clear on when he was going to have me home with him, so that my one-on-one hours could be canceled then. This wasn’t doable for my husband or me, so finally it was agreed that my hours would be filled in regardless.

For most of 2021, we had day activities at the home due to the pandemic. Thankfully, by September, the day center opened and the clients were mostly back to their pre-pandemic groups. I, however, was not. Thanks to my one-on-one, I was provided day activities in the home and this continues to be the case so far. There has been talk of me starting in a small group, but this isn’t doable for me right now or within the foreseeable future.

For the first half of the year, I struggled a lot with the battle inside my head between wanting to live more independently and wanting even more support. This led to a climax in mid-June, when the manager told me that more support is really not possible. I was in a crisis for about two weeks. Then I started my new medication, topiramate, which calmed some of the inner conflict. It, of course, helped that I was reassured that, regardless of my attempts to push staff away, I was going to keep my allocated one-on-one support hours at least until the end of December. And of course now they have been approved until December 2023.

Over the summer, when my topiramate started to kick in, I was able to be more creative than I’d been in a long while. I started polymer clay once again and have been able to enjoy this hobby ever since. Like I mentioned when I wrote down my hopes for 2021, I didn’t intend on doing it all independently and that’s still not one of my hopes.

Looking back at my hopes, I did pretty well on them for this year. See, I think it helps that I don’t call them resolutions or goals, ha.

Overall, this year was a pretty good one for me personally. Even in terms of COVID, it’s been as good as possible, in that I haven’t contracted the virus and neither has anyone else in my home. One of my staff tested positive recently and originally we were supposed to all get tested today. After conferring with the care agency’s pandemic team, this got canceled though. I may still get a lateral flow test later today just to be sure. Let’s hope I won’t end the year with COVID.

How has your 2021 been?

Superstitions

Posted on by Astrid

Today’s topic for Throwback Thursday is superstitions, amulets and charms. I had quite many growing up, but not most of the usual ones. Let me share.

My sister was born on Friday the 13th, so no-one in our family dare believe this to be an unlucky day. However, I had quite a few lucky and unlucky days particularly as a teen. Friday the 24th was unlucky, for example. The reason was the fact that on Friday, September 24, 1999, I had realized that I wasn’t going to fit in at mainstream high school and was most likely going to struggle through it all of the six years it lasted. I was determined to make school a success though, and indeed I graduated. I earned my diploma on another Friday the 24th, namely June 24, 2005. Maybe it wasn’t such an unlucky day after all.

Like I’ve said before, I believed particular dates to be lucky or unlucky too. November 2 was unlucky. Again, this was the date I landed in crisis, twice, both times on Fridays, in 2001 and 2007.

Like Friday the 13th, I didn’t hold any of the other usual superstitions either. I never struggled to walk under a ladder, to walk on cracks in the pavement and wasn’t worried when a black cat crossed my path. I did get an old horseshoe at a horse stable once and kept it. My father told me it was supposed to bring good luck, but I never hung it anywhere.

As a child, I did keep fortune-telling charms. I used to have a particular blue, glass stone with a flat and a curved side and used to ask it yes-or-no questions, then throw it. If it landed flat on its back, the answer was yes and if it landed curved side down, the answer was no. Of course, now I know it is far more likely to land flat on its back.

I also would make a wish if I was able to peel off a tangerine’s peel in one go. I know the traditional thing is about oranges, but I never ate those. Then when I’d pulled off the tangerine’s peel, the number of slices I would be able to keep together predicted how likely my wish was to come true.

Now that I’m an adult, I no longer hold many superstitions. I did have a long-standing belief for most of my adult life that I was in for bad luck eventually. This specifically involved the idea that, once I’d feel secure at a living place, I’d develop some serious illness and die. Over the past year, I’ve slowly been able to let go of this belief. My faith helps me in this respect too.

Are you superstitious?

A Productive Appointment With My Psychiatrist

Posted on by Astrid

I had an appointment with my psychiatrist today. Last week, I had already raised some issues relating to my medication with my nurse practitioner and asked to see the psychiatrist about them.

Among other things, I finally dared to ask for them to consider lowering my aripiprazole (Abilify) dose. I have been on this antipsychotic for nearly twelve years and on my current dose of 30mg, which is the max dose, for about five or six of those years. I have had the wish to lower my dosage for years, but was always asked to wait for a while to stabilize. Now that my one-on-one has been approved for the coming two years and I’m relatively stable, I thought further waiting would be senseless.

My psychiatrist today proposed to lower my dosage in steps of 5mg each, while remaining on a new dosage for three months. She claims that the first two weeks, I won’t see any effects of the lowering of my dosage so any change in behavior doesn’t count as a sign that my dose needs to be upped again. When I wrote in a Facebook group about my lowering my aripiprazole, I was met with surprise at the slow taper. Indeed, I’m not sure where my psychiatrist got the idea from that the first two weeks don’t count, since aripiprazole has a half-life of about 72 hours, not two weeks. However, since I don’t suffer with any major side effects, I don’t see why the slow taper would be bad.

My psychiatrist said that we won’t have a goal dosage in mind, so we’ll keep tapering until it’s no longer the right thing. Yes, even if this means I can do without aripiprazole altogether eventually. I was a little shocked when she mentioned the possibility that I might not need my aripiprazole at all at one point. Of course, given the slow taper, this will take like 18 months or so, but I don’t mind.

I won’t start my taper until next month, because first we decided to increase my topiramate (Topamax) by yet another 25mg in the evening. Then I’ll be taking 50mg in the evening and 25mg in the morning. This is still a pretty low dosage even for trauma-related symptoms. It is hoped that, by doing this, we’ll help reduce my night-time anxiety even more and I won’t need my PRN quetiapine (Seroquel) anymore. After all, that wasn’t helping with my anxiety really. I originally got my quetiapine when I was still experiencing a lot of overload-related irritability. Now it’s more anxiety and PTSD that’s causing me to feel strong distress, so topiramate may be a better fit. Of course, topiramate is a daily medication, but if it can prevent me experiencing significant distress, I’m willing to try it.

I do feel a little weird, in that I was always taught that medication isn’t a substitute for coping skills or support and at the same time that it’s either one or the other. I mean, even Dutch care funding regulations at least used to say that if someone was medicated for something, they no longer qualified for support in this particular area. My psychiatrist today called medication a “chemical nurse”, in that a nurse’s role is to help calm you down when in crisis and that’s what meds do too. Now that I have the best human support I can get, I think it’s time to figure out the best medication I can get too.

Lastly, we discussed my getting medication specifically in prep for dental treatment. I explained that, after getting seven cavities filled without anesthetic many years ago, I have pretty bad anxiety but it shows itself in freezing. We decided I could take lorazepam (Ativan) 2.5mg the morning before the procedure and then when leaving (the surgery is about a 45-minute drive away), I could take another 1mg. The psychiatrist said I could skip the 1mg if I was feeling really drowsy, but my staff said the dentist can deal with me even if I am.

Overall, I’m pretty satisfied with the results of this appointment. My nurse practitioner should have sent the prescription for the increased topiramate to the pharmacy and that should be filled next week.

Share Your World (December 27, 2021)

Posted on by Astrid

Oh my, can you believe we’ve officially started the last week of 2021? Not even the last full week? I seriously can’t believe how quickly time flies at the end of the year.

Today, I’m joining Share Your World or #SYW. I just discovered that Melanie ditched her domain, which was the reason I hadn’t seen her posts in over a month. Shame on me for not having found out before! This means I’m probably having to redo all my other links to her posts. However, now’s not the time to do this. Anyway, let’s get started. I don’t do #SYW that often, so for those who don’t know, it’s a meme where you get to ask four or five of Melanie’s weekly questions, plus share your gratitude. Here goes.

At 12 a.m. on December 31st/Jan 1st, what will you be doing? (use your own time zone please)
Probably sleep. I will be at the care facility for New Year’s and all celebrations here take place during the day or evening, including the (light) fireworks. There will not be any extra staff till 12AM. Of course, we do have two waking night staff, but it’s not like they’re going to party with me.

Is there a tradition you have for New Year’s Eve?
Usually we’ll eat “oliebollen”, which I was told last year are much like donuts but then the opposites, ie. the holes.

Do you have any hope or reason you find that next year will be better?
Yes. Like I said a couple of times before already, my one-on-one support got approved for the coming two years, so I won’t have to worry about losing my support for the entirety of 2022.

What’s the biggest personal lesson you learned during 2021?
To trust that, with God’s help, things will be okay in the end, I guess. I know COVID and many other of the world’s problems are likely here to stay for a while. I don’t want to dismiss other people’s problems by saying that for me, 2021 was a much better year than 2020. I however do trust that, ultimately, God will work things out for the better.

GRATITUDE SECTION

Describe in 1-3 words how you feel going into 2022
Hopeful, joyous, grateful.

Am I Good Enough for Jesus?

Posted on by Astrid

It’s the day after Christmas. Boxing day in the UK. Second Christmas in the Netherlands. I spent Christmas with my in-laws having a good time, then went to my and my husband’s house in Lobith. On our way from my in-laws to our house, my husband and I talked about faith. I noticed while talking with him that I’m still struggling with my faith. It isn’t so much that I don’t believe in God or that I, personally, don’t believe Jesus is my savior, but how can I be sure I’m saved if we’re saved by grace alone? How can anyone be sure?

Today, I decided to look up some Christian journaling prompts to get me started on my reflections on faith. The first one I came across asked us to write about our relationship with God. Is He a friend, a coach, a father or perhaps merely an acquaintance? I’d say, He’s a Father, but I’m not sure he’s the loving, caring father most children hopefully have.

It doesn’t help that I didn’t really grow up in a nurturing earthly family. I have hardly known love. Of course, I know rationally that my husband loves me, but when it comes to faith, I still sometimes believe that if he truly knew me, he’d believe I’d go to hell.

And God truly knows me. He knows I bought The Artist’s Way, which turns out to be pretty New Age’ish. He knows I used a censored swear word this afternoon, which no-one else knows because no-one was around. He knows I worried last Friday about the holiday money I usually get from my parents each year. God knows my heart, mind and soul. And I’m pretty sure that, like my earthly father, He’s going to judge me pretty harshly for it. And, whereas my earthly father could give me a beating and send me to my room for an hour or two, God could send me to hell for all of eternity.

And of course I do believe in Jesus. I admit I need him more than I need anything. But if faith doesn’t change me – and I’ve believed in Jesus for a year now -, isn’t it completely invalid? I do see a change in myself over the past year, but it’s so small I’m not sure it’s enough. Am I good enough for Jesus yet? I pray that I will be.

God, please show me Your will and help me be obedient to it. Help me let go of those things which are undesirable in Your view and to embrace those things that are desirable. Please help me move closer to You. In Jesus name, I pray, Amen.

Artistic As Always #WotW

Posted on by Astrid

Hi everyone this Christmas Eve. How are you all doing? I’m doing pretty well. I’m joining Word of the Week again with a phrase (as almost always) and (again as almost always) my phrase of the week is related to my creative endeavors. I’m trying to come up with original phrases to say I’ve been crafting and creating a lot again. Today my phrase of the week is: Artistic As Always.

Truly, I don’t think a single day went by that I didn’t do any creative activity. I mean, I haven’t been blogging as often as I’d like to, but I did a lot of polymer clay work. I created several charms, including a planet, a flower and a rainbow, which is currently in the oven.

I also created my first polymer clay cane. A cane is a log of clay with a design on the inside, which you can then cut into slices to use as beads or to decorate a vase or whatever. I decided to do a flower cane and to make the slices into beads.

I will combine them, some yellow beads I made today that are also in the oven and a flower charm I made last week into a necklace for a woman who lives in the care home downstairs from mine, who is obsessed with necklaces. I still need to create lots of yellow beads, but the woman won’t have her birthday till the end of January.

I also got some crafty supplies in my Christmas hamper from the day center. They are two silicone molds. When I saw them, I did worry they’re a bit too shallow and detailed to use with polymer clay, as they’re officially for chocolate I think. I created a butterfly with one of the molds, which is now in the oven too.

I do worry that the butterfly will be some kind of omen though. You see, a fellow client went into hospital with recurring seizures yesterday and I’m worried sick that he’ll die. Please all pray that he’ll recover.

In addition to creating art itself, I’ve also been busy exploring the artistic community online. I joined several Facebook groups for neurodivergent creators and artists. For those not aware, the term “neurodivergent” refers to people with a neurological or mental health condition, such as autism, ADHD, bipolar disorder, etc. I initially worried the term “artist” or even “creative” was meant to include those creating visual artworks such as paintings or drawings only. Thankfully, I quickly found out the groups I am part of are inclusive of all creative outlets.

Lastly, inspired by a conversation in one of the FB groups, I decided to buy the books The Artist’s Way and The Artist’s Way Workbook. I haven’t yet been able to do anything in them, because I read books on my iPhone and using my Braille display only and, since the latest iOS update, these don’t work well together. That is, several times a day, seemingly at random, my Braille display will get stuck and the only way to get it unstuck is to reboot my iPhone. Not ideal when in the middle of a sentence in a book.

Overall, I’ve been really artistic over the past week. It’s been an intense week on other fronts too, but I may share more about that in a separate post.

Word of the Week linky

My Plans for This Christmas

Posted on by Astrid

Hi everyone on this rainy Thursday evening, two days before Christmas. One of Mama Kat’s writing prompts for this week is to share your plans for this holiday season. For the first time ever, I’m not just dreading the fuss. I mean, last year, I’d just become a Christian and was kind of looking forward to the spiritual aspect of Christmas, but not really either, as I knew I still had a long walk to go in my faith. I’m about the same this year. That being said, with respect to the celebrations with family, I was still dreading those last year. This year, I’m more neutral about them, even slightly positive. Let me share my plans.

Tomorrow, we’re supposed to have day activities like normal. We had our Christmas lunch today and I got half of my Christmas hamper. The other half, my staff will bring tomorrow, as it hadn’t arrived when she left to bring the first half to me yet. The half that arrived today contained mostly treats. The other half, she said, are two silicone molds for my polymer clay. I’m really looking forward to receiving those.

Tomorrow evening, I initially thought we were going to get food delivered. Thankfully, though we entered full lockdown last week, restaurants are open for takeaway or delivery. I was not yet sure which restaurant or snack corner we would be ordering from. Then this evening I found out my staff had planned to prepare a cassrole. Not something I enjoy. I contemplated ordering delivery just for myself. Then after some texting between several staff, it was decided to change the dinner plans for Friday, Saturday and Sunday around and we’re going to have fries and chicken legs.

On Saturday at around 2PM, a ParaTransit taxi is going to arrive to take me to my in-laws. There, I, my husband and my oldest sister-in-law will have dinner. My husband teased me about the food we’d have, because I’m quite a picky eater. Really though, we’re going to have chicken roulade, which I love.

My husband is likely going to read from the Bible at dinnertime. Neither his parents nor his sister are religious, but they tolerate him reading the Bible. I loved him reading Isaiah’s prophecy of Jesus’ coming, as well as the Christmas story, last year.

I may stay at my in-laws for a while after dinner and then leave for my and my husband’s house in Lobith, where we will stay for the night.

Sunday morning, which is called Second Christmas here in the Netherlands, we may watch Hour of Power together. Thinking of which, I remember now there’ll be a show on Saturday too, but I don’t know whether it’ll be in the morning or evening.

I will go back to the care facility sometime Sunday afternoon. Sunday evening, we’re going to have Chinese takeaway. This was originally planned for Saturday, but it was my favorite out of the three Christmas meals for the weekend, so I’m so happy the meal plan got shifted.

We’ll likely have more than enough treats to last us through to February, honestly. At least, I got three packages of my favorite Christmas cookies from one of my staff yesterday and another one in my Christmas hamper. That plus chocolate, winegums and Pringles. Yum, but if I’m not careful, I’m going to weigh 200 pounds by the time I’m done with them. Then again, as they say, you don’t become fat between Christmas and New Year’s but between New Year’s and Christmas. In other words, it’s snacking all year round that really leads to lasting weight gain. This being the case, I am happy this holiday season, though it is indeed part about the food, is also about faith and family.

As for my own family, both my sister and her family and my parents sent me a Christmas card. However, I haven’t been at my parents’ house in years and they didn’t invite me. If they do want to see me, I think the spring is a more appropriate time.

What are your plans for the upcoming holidays?

Mama’s Losin’ It