Fun and Games for When You’re Bored #AtoZChallenge

Posted on by Astrid

Welcome to my letter F post in the #AtoZChallenge. I want to have a lighthearted topic for today. After all, I’m bored and don’t want to delve deep into some topic of self-care. Of course, dealing with boredom appropriately can be an act of self-care. I’m sharing a few fun activities to do when you’re bored.

1. Card games. I particularly love the game of “pesten” (“bullying” in English), which is a variation to the card game of mau mau and similar to Uno. It is played with a deck of 55 cards (52 of a regular pack plus three jokers). The goal is to get rid of all of your cards first, but you can bully the person next to you by the cards you play. For example, if you play an eight, the person next must pass his turn. If you play a two or joker, the next person must draw two or five cards from the stack, respectively. There are some other rules too that are pretty complicated particularly if there are more than two players in the game. For example, an ace means to turn around, so it’s often hard to remember whether we’re playing clockwise or counterclockwise. For this reason, I usually play the game with one other person.

I should really be trying to learn some other card games, as “pesten” is the only one I know. I guess playing solitaire is a good boredom killer if you’re by yourself.

2. Board games. I don’t play those often, but as a tween, I did. I particularly liked monopoly. I now have an audio-based version of monopoly on my iPhone. Still figuring it out though.

3. Word games and puzzles. I particularly like to make word strings, where the next word has to start with the last letter of the previous word. These can be themed, such as first names, animals, etc. I also like to do word puzzles on my phone. Most regular word games are not accessible with VoiceOver. However, I have an app called 7 Little Words that is.

4. Reading. We as a system like to read a variety of books depending on who out of our personalities is fronting. For example, the young alters like reading funny stories and jokes. Like we said yesterday, there are many free kids’ stories available in eBook format from both Amazon and Apple Books.

The teens and adults prefer young adult novels and occasionally fiction geared towards adults. We also love memoirs.

What fun activities can you think of to do when you’re bored?

My Hopes for 2020

Posted on by Astrid

Hi everyone and a happy new year to you all! I’m wishing all my readers the best for 2020. May this year be filled with health and happiness.

Like last year, I don’t really do new year’s resolutions. That is, I’m calling them “hopes” as to have them give me less pressure. This may be a stupid mind trick, so that if I fail at all of them at the end of the year I can just say I wasn’t really meaning to stick to them. Well, anyway, here goes.

1. I hope to find a way to keep my marriage as strong as it’s now whilst I’m living in the care facility. This mainly means I need to find a way to keep seeing my husband despite the fact that I won’t have the ParaTransit to travel one way even once every other week. I really need to find a way to learn to travel by public transportation. The thought of which overwhelms me. Then again, the consequences of not making this work, are far, far worse. I have very conflicting feelings about this whole situation, which I won’t be sharing here.

2. I hope to settle in at the care facility, both the home and the day center, and find a routine that keeps me happy.

3. I hope to keep going for a healthier lifestyle. I first hope to be more mindful of my food choices. I mean, I did okay’ish over the holidays, eating far less than I would have had I not had it in mind that I ultimately need to lose all the pounds I put on. However, I still ate more than I should have.

I hope to stick to my habit of drinking two liters of fluid each day. I have occasionally lost track when at my husband’s, but did welll over the past month otherwise.

I really want to get into an exercise routine. I have a gym in mind that I may want to join in February (because everyone else joins the gym in January).

4. I hope to stick to a regular writing and blogging schedule. I won’t push myself to blog everyday or the like. I mean, I could be joining in with #JusJoJan again and I know the rules aren’t strict so this post counts too, but I think I’d rather jump in when a prompt speaks to me. I aim for a minimum of two posts a week, unless illness or technical problems get in the way.

Dreaming bigger, I hope to write another essay that could be published in an anthology in 2020. I mean, I’m still excited about the one piece I had published in 2015, but there must be more in store for me.

5. I hope to read more. The year is off to a good start, as I finished a book (okay, one I’d started reading in 2019) today. I really want toventure out into the book blogosphere, even though I have zero intention of becoming a real book blogger.

6. I hope I can get into a better self-care routine. This is really an excuse for me to explore more of mindfulness, essential oils, relaxation, etc. I often think that I need to be productive all day. Then recently I listened to a Podcast in which the presenters explained the importance of daydreaming. They linked a lack of it to dementia, which has me scared like crap, because whenever I’m not doing anything in particular, I tend to fall asleep. They didn’t say whether you can train yourself to daydream or whether this helps, but it can’t be bad.

What do you hope to achieve in 2020?

Goals: Major Things I Hope to Achieve in Life #AtoZChallenge

Posted on by Astrid

Welcome to day seven in the A to Z Challenge. I’m finding that, even though ideas spin through my mind to blog about, I’m already less motivated to write and especially so for the #AtoZChallenge. Today’s post is a list, so I’m not sure it fits in with the theme of miscellaneous musings. I am feeling a bit uninspired though and lists are the easiest to write posts. I am sharing my major goals in life.

1. Find myself a satisfactory living situation. When I wrote a list of goals I had for myself on my old blog, buying a house was on it. Not that I’d ever be able to buy a house on my own, but divorcing my husband wasn’t on the list. This (buying a house) was however more my husband’s goal than mine. When I finally decided to try to get into long-term care, I felt much calmer than I did before. Even though the process is now going on for six months and counting, I’m still sure of myself on this part. This is the reason finding a satisfactory living situation tops my list.

2. Write my autobiography. I’ve wanted to be a writer ever since I was a young child. Of course, I am a writer with my blog and I also got a piece published in an anthology in 2015. I would love to publish more pieces, but I’d also love to write a memoir.

3. Find a hobby (other than blogging) that I can do independently. Or almost independently. I’m in a course now at day activities to explore this. We’ve been trying soap making for the last two weeks, because I used to enjoy that, and it’s going okay.

4. Visit the United States. I have a few long-time online friends from there whom I’d love to visit. I’d also love to visit carol anne of Therapy Bits in Ireland.

5. Heal from my childhood trauma. I hope to be able to someday access a qualified therapist able to treat me for my trauma-based symptoms. Even if I can’t do that, I hope to heal.

What are your major goals in life?

Five of the Most Significant Events in My Life

Posted on by Astrid

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo

My Hopes for 2019

Posted on by Astrid

Happy new year everyone! Today and hopefully throughout this month, I’ll be joining in with Just Jot It! January or #JusJoJan for short, organized by Linda G. Hill. Today’s prompt is to reflect back on 2018 or write about your plans or resolutions for 2019. since I already wrote about my 2018, I’m going to use this post to jot down my hopes, goals and plans for 2019. Here goes.

1. Find suitable supported housing. This is my main hope for 2019. Of course, given my experience with finding (or not finding) supported housing out of the mental institution, I don’t have my hopes up too high. However, I at least want to get long-term care funding approved. That way, even if I don’t find a housing place, I can get more support in my current home than I get now.

2. Get back on track with healthier living. I didn’t gain any weight over the holidays and in 2018, lost a pound or 500 grams, while I expected I’d gained. I’m proud of that, but I’m still obese. Knowing that I’ve experienced some time when my BMI was under 30 this past year, I badly want to lose those two or three pounds it takes to be back at just overweight.

More importantly though, I want to embrace a healthier lifestyle. I want to exercise regularly and eat at least somewhat healthfully.

3. Blog regularly. In January, participating in #JusJoJan means I’ll have something to write about each day, as Linda will be posting prompts. I plan on writing regularly throughout the year though.

4. Get a new computer. I have had this on my list of plans ever since 2017. This year, I’m serious about it though, as I finally convinced my husband too that my current PC is outdated. I am seriously considering getting a Mac, as that’d mean I could do without having to get a screen reader separate from the operating system. I already love my iPhone, but I feel I need a computer too.

5. Stay mentally stable. Over 2018, I’ve not had serious crises other than the one in January that eventually got me kickked out of my old day activities place. I’m still considering terminating mental health treatment once I’ve found suited supported housing. After all, I’m pretty confident that the depression I suffered early in 2018 and that required an increase in my antidepressant dose, was caused by my difficulties coping at home and at day activities. I do still experience trauma-related symptoms, but at this point, they’re manageable.

What are your hopes for 2019?

Ten of The Most Memorable Gifts I Ever Received

Posted on by Astrid

Originally, I wanted to post about the lovely box filled with snacks and gifts I received for Christmas at day activities earlier this week. It’s a tradition here that employers give their employees such a box for Christmas. Of course, day activities isn’t a real job, but we get a Christmas box anyway. Ours was even more special, since it had been partly personalized for each of us by our staff. Maybe I could devote a post to this box, but then I remembered that Finish the Sentence Friday is about gifts too. I am twisting the prompt a little and not just writing about the gifts I received as a child or for Christmas specifically. After all, like I may’ve said before, Christmas isn’t as important a gift-giving celebration as St. Nicholas on December 5. Besides, I don’t always remember which gifts I got for St. Nick and which for my birthday. For this reason, I’m creating a list of the most memorable gifts I received throughout my life.

1. Wally, the stuffed whale. I got her when I came home from the NICU at three months of age. I slept with her till I was nineteen. Yes, I slept with stuffed animals that long! In fact, I still do. Now I don’t sleep with Wally anymore, but I still own her.

2. Roza, my favorite doll. No, Rosa isn’t spelled with a z in Dutch, but I had no idea. I got her from my paternal grandma for my third birthday. She had bought her in Berlin and we joked about the German word for “doll”, which is similar to the Dutch word for “poop”. Roza remained my favorite doll throughout childhood. When I was seven, I was interviewed for a Dutch magazine for blind children and said that my memory from three years back was tha tit was the year after getting my favorite doll.

3. A Barbie doll I got for my eleventh birthday. The reason this one is so memorable is the fact that my mother regretted giving it to me. She felt it wasn’t “age-appropriate” and I might need to go residential at the school for the blind if I didn’t catch up with my age peers socially and emotionally. I need a separate post to explain the (lack of) logic behind this reasoning.

4. Deodorant. I got this for my fourteenth birthday from my sister. No, not in a package that had other toiletries in it. Just a deodorant stick. She clearly wanted to send me a message. I didn’t get it.

5. A coffee maker. I got it for St. Nicholas when I was 20. I was going to live independently the next year and needed a coffee maker then. My husband is happy he didn’t drink coffee when I still had the apartment I used that coffee maker in, as it quickly got very moldy and dirty from lack of cleaning, as did the rest of the apartment.

6. A Planxty CD. This was the gift my husband gave me for the first birthday after we’d started dating in 2008. I only played it when my husband was there, as I really didn’t like it. Then again, he didn’t like my first gift for him, which was a book of previously unpublished philosophical works.

7. A liquorice “cake”. My husband and I got it for our wedding from my staff at the psychiatric resocialization ward in 2011.

8. The sensory cat soft toy I got for my birthday last year. It can be put in the microwave and then gives off heat and a lovely lavender scent.

9. Rainbow/Sofie, the stuffed unicorn I got from my previous day activities when I left there. She’s truly so cool! She has two names, because two readers of my blog each came up with an equally good one.

10. A weighted unicorn soft toy. Finally, I have to include something from this year’s Christmas box. It is, interestingly, another stuffed unicorn. This one is weighted as to provide sensory benefits. I’m having another contest to name her, like I did with Rainbow/Sofie.

What gifts will you always remember having received?

The Most Important People in My Life #Write31Days

Posted on by Astrid

Welcome to day 13 in #Write31Days. It’s getting harder and harder to keep up with the challenge, but I was reminded by my husband not to give up now that I have nearly two weeks’ worth of effort put into it.

Today, I’m making a list of the most important people in my life. I’ll also explain why these people are so important to me. I tend not to come across very appreciative of wht people mean to me. I mean, the people in my life right now are mostly very supportive, and yet I don’t tell them so that often.

1. My husband. Do I really need to explain? I first met him in 2007, when I was struggling to hold on living independently. He supported me throughout my 9 1/2 years in the mental hospital and through the nearly eighteen months we’ve been living together now. He also fully supports my choice of trying to get into supported housing, even if it means we can only see each other on week-ends. He’s also just the most loving person around. Hubby, I love you!

2. My in-laws. As regular readers know, I am in low contact with my own parents. For this reason, I’m all the more thankful to have my in-laws. My mother-in-law particularly helps me with important meetings and with other decisions I need to make.

3. My home support staff. I first met my support coordinator in August of last year, when I finally got approved for home support. At first, she mostly just monitored my care with my old support worker, but eventually, she had to step up more. She now sees me usually once a week. My new support worker – the old one was moved to a team in another area – sees me twice a week. They’re both very supportive and skilled and especially my support coordinator goes out of her way to help me.

4. My day activities staff. My assigned support worker is one of the nicest staff working at that group. Not that the other staff aren’t nice, but she is the one who most truly gets me. The other staff truly try too. I am so glad to be here. Now I must say my old day activities staff were nice too, but they weren’t equipped with the information to properly support me. Besides, the manager was probably more stacked against my “psychiatric” needs.

Who are the most important people in your life?

How My Friends and Family Would Describe Me #Write31Days

Posted on by Astrid

Welcome to day ten in #Write31Days. Today, I’m writing on how others see me. The prompt from The Self-Exploration Journal I’m basing this post on asks how my family and friends would describe me. They probably assume that my family are mostly supportive. My parents are not. But it still helps to look at how tey’d describe me to get to know myself. I am going to list a few qualities I’m told I possess.

1. Strong-willedness. Most of my family and friends agree that I’m pretty strong-willed. This can be a positive thing or a negative thing. I tend to fight fiercely for what I think is right. On the other hand, what I think is right is not always what others want.

2. Intelligence. My father pretty much reduces me to the three digits of my measured verbal IQ at age twelve. It’s 154, if anyone’s interested. My IQ was measured again last year and was down to 119, but my parents feel I wasn’t trying my best then.

3. Determination. Some of my friends view me as quite a go-getter. Other people tend to think I’m quite the opposite. It tends to depend more on their view on my disabilities than on me.

4. Humor. Way back in like 2005, my psychologist asked for my parents and sister to each come up with three qualities of me. My sister came up with my sense of humor. It tends to be pretty dark and cynical. I remember, when I had just been hospitalized on the psych unit, already cracking jokes about the differences between the patients and the staff.

5. Manipulativeness. I just had to list this one. Particularly my parents describe me as manipulative. In a sense they’re right. Then again, what strong-willed, determined person isn’t manipulative in the face of authority figures telling them what is best for them? I think that being manipulative isn’t necessarily a negative thing. All communication is in some ways manipulative, as its aim is to influence others. So can I just say I possess a bit of healthy manipulativeness?

What qualities would your friends and family say you possess?

My Successes in Life #Write31Days

Posted on by Astrid

Welcome to day four in #Write31Days. I use this challenge to write on personal growth. I’m struggling a lot, so as to get myself to think more positively, I decided to take the day one prompt from Lisa Shea’s journaling prompts on positive thinking. It asks us to list our successes in life. This is rather difficult, as my successes are often used against me. For example, the fact that I completed a high level high school, is used as “proof” that I don’t need lots of care. I am just going to write anyway and see where this takes me.

1. I completed a mainstream, high level high school. This doesn’t just show my academic ability, but my persistence too. I hated it with a vengeance from the moment I started it, but finished it anyway.

2. I completed my first year of college. Same shit really. I liked my major though.

3. I tried to live independently. I failed, but I still consider it a success because I tried the best I could. Again, this shows my persistence.

4. I have been a pretty consistent blogger for over fifteen years.

5. I got a piece published in an anthology. In 2015, my piece was published n a book on typed communication by autistic people.

6. I learned to use an iPhone. I thought last year that I may not be able to learn to operate new-to-me technology anymore, but I was.

7. I prepared my own breakfast today and didn’t spill it everywhere.

8. I am surviving. Having been suicidal on too many occasions to count and having run into a little too many other dangerous situations, I’m proud to be alive. Not happy, but proud.

Seven Things I Wish My Unsupportive Parents Understood About Me

Posted on by Astrid

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overcome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.