Gratitude List (September 7, 2019) #TToT

Posted on by Astrid

Hi everyone! I’ve been wanting to write a lot today, but somehow, I once again couldn’t find the words to write a proper blog post. This week was a good one in some major ways, but it was also a very stressful one. To focus my mind on the positives, I’m joining in with Ten Things of Thankful (#TToT).

1. The sensory room at day activities. I have been relaxing in it a lot lately. There’s a guy who uses it often, but he was off this past week, so I took full advantage of the available room.

2. Tranquilizers. On Tuesday, I was very irritable. I am so glad that the staff offered to give me my lorazepam and it worked.

3. Great news from the care facility, of course. I got to speak to the behavior specialist and support coordinator, which was good. It was great to hear that I will most likely be moving by September 23.

4. Hearing more about the house we’re buying. We got a go on the mortgage and are now waiting to get the keys.

5. My husband having been able to change the days he’ll be off work. He would originally have the week of September 16 off, but since I’ll be moving to Raalte on the 23rd and we’ll get the keys to our house most likely on the 25th, that wasn’t ideal. My husband will now have the week of the 23rd and the week of the 30th off.

6. Nice food. To celebbrate the great news about my moving to the care facility, my husband got us pizza and a tompouce (a Dutch pastry) on Tuesday. On Thursday, I was stressed, so I bought myself a lot of snack food. Still, I enjoyed it.

7. Horseback riding again. Yesterday marked my first riding lesson after the summer break. I rode Morritz again. I didn’t ask about Angie, the horse I previously often rode, who was injured some six months ago. As the weather was relatively good, we rode our horses outside.

8. My stuffed bear. I had a lot of nightmares and vivid dreams this past week, so I am all the more grateful for the stuffed bear my mother-in-law won for me at an animal shelter event last year. I have a ton of other soft toys, but this one is the biggest.

I am also grateful for the extra duvet my husband laid over me some nights back when he realized before me that I’d otherwise feel cold.

9. Painkillers. I’ve been having a toothache lately and had a headache yesterday. They may or may not be related. And yes, my father-in-law is a dentist, but this makes me more wary of going to the dentist (him) with this. Thankfully, paracetamol has been working.

10. My amazing fellow clients at day activities. A new girl started yesterday. She’s nice. So are the others. Most don’t understand that I’ll be moving, so I haven’t told them yet. I’ll be missing them.

What have you been grateful for lately?

Working On Us Prompt: Family Relationships and Boundaries

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This week’s Working On Us prompt is about relationships and boundaries. I am going to focus in my post on my relationship with my family of origin.

As regular readers know, I don’t have the best relationship with my parents. They are very unsupportive of me regarding my mental health and disabilities in general. They, in short, believe that I refuse to accept my blindness and for that reason, choose to make up my other disabilities, including mental illness, to have an excuse to be different. They say I somehow crave attention and therefore want to manipulate everyone into providing me care.

Well, let me be very clear that I do not choose to be mentally ill or autistic. In part, my mental health issues are in fact trauma-based, having been caused by my parents’ mistreatment of me.

For this reason, I’ve had to set some boundaries with my parents. None of these I voiced towards them yet. I, for example, have them, as well as my sister, on restricted access to my Facebook, which means they don’t get to see posts I set to friends only even though we are technically Facebook friends. My sister is generally less eager to voice her opinion, but she for all I know 100% agrees with my parents. My brother-in-law isn’t really any bad, but I have him on restricted access just in case. When I created this blog, I purposefully didn’t link it to my Facebook, so that my parents and sister are less likely to find it.

Another boundary is not having told my parents or sister that I’m going into long-term care. I am going to officially disclose my going into long-term care on the afternoon or evening of the day I move to the care facility. I have already had a dozen scenarios run through my mind of how they will respond. They may already know, of course, and never have told me in order to keep the peace. They probably don’t know though. In that case, they may decide to estrange themselves from me, or they may try to talk me out of being in long-term care. They may, in the best case scenario, say it’s my choice and my life.

As far as respecting my boundaries, I’ve never set truly firm boundaries with my parents. I may have to soon, in case they want to talk me out of being in long-term care. I may even have to go no contact with them myself.

In case you are wondering who supports me, I do have my lovely husband and his parents. My husband of course will be missing me when I go into long-term care, but he 100% supports me nonetheless.

#IWSG: My Ideal Writing Space

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It is the first Wednesday of September and that means it’s once again time for the Insecure Writer’s Support Group (#IWSG) to come together. This past month has been pretty productive with respect to my writing. I also left my comfort zone a little, writing one poem and learning more about writing. I subscribed to a writing-related newsletter at the end of July and have been enjoying my daily dose of inspiration.

This month’s optional question is about your ideal place to write in the world. If you could choose one place in the world to write your next story, what would it be and why? As it is, I write best when in my room, at my own desk. This desk is exactly the right height. I’ve tried writing while sitting at other desks or tables, but they’re either too low or too high. I also need my own chair, which is just about right for me too.

This being said, I have had my desk in various places. I’ve had it in several of my institution rooms. I had it when living independently in 2007. Now, it is in my room in our current house.

I will be taking this desk to the care facility with me when I move. This means I’ll have to use another desk when at my husband’s and my house. I do have another desk that can be made lower or higher. Currently, it is set too low, but I will ask my husband to make it exactly as high as my other desk. That way, I’ll hopefully still be able to write when at our home.

I usually don’t write well when there’s noise around me. I can’t really even write when music is playing in the background. This makes me glad that the staff at the care facility eventually chose the room further down the hall for me.

I like to type on my external Bluetooth keyboard connected to my iPhone. It has to sit on a laptop case or it’s not in the right position in relation to my Braille display or my hands. I can type on my laptop keyboard too, but currently being used to my Bluetooth keyboard, I prefer that.

As you can see, I don’t fancy writing in some type of exotic place, but I do have a lot of requirements for writing comfortably.

Moving to the Care Facility Soon!

Posted on by Astrid

As regular readers of this blog know, I’ve been planning on moving into long-term care for nearly a year. That is, that’s how long it’s taken me to decide I for sure want to apply for long-term care funding, to apply for it, to appeal the decision denying me the funding, to win the appeal and then to find a place. Honestly, this whole journey has been going on much longer. Twelve years ago this month, I told my support coordinator in Nijmegen that I wanted to get into one of their living facilities for people with mobility impairments. Due to my psychiatric hospitalization, this idea got trashed and we ended up looking for places for people with mental illness or “high-functioning” autism. That took many years and was unsuccessful in the end. I got kicked out of the mental hospital in May of 2017 for supposedly wanting to remain institutionalized forever. Well, the psychologist was right in that I feel I need 24-hour care for the rest of my life, but I most definitely didn’t intend on staying in the psychiatric hospital forever. I’d much rather go into a facility for people with developmental disabilities. Thankfully all this time of battling the system that says that an IQ above 85 means you should be pushed towards independence forever, ultimately paid off. I will be moving to the care facility in Raalte on September 23.

The house I will be placed in, has room for twelve residents, divided between two groups of six. There’s always at least two staff in the house during the time the residents are home and awake. During the time we’re supposed to be at the day center, there’s an on-call staff for the entire living facility, but of course there’s staff at the day center. During the night, there’s a sleeping staff at my house, but there’s also a staff who is awake and serves the entire facility.

I will get a room with its own bathroom. This room is a bit further down the hall than the other currently available room, but that room has a shared bathroom. At first, I said I didn’t mind, but the staff warned me that the other clients don’t clean up after themselves. I will get a call button to alert a staff member, so if I can’t get out of the rooom for whatever reason, I can still call the staff if they don’t hear me shouting.

On Thursday, the staff will be discussing what day center group I’ll be placed in. The day center manager did say, after I asked it, that my elliptical can be placed there. They have day activities Monday through Thursday and on alternating Fridays.

They will make sure they have an extra staf available on the 23rd when I move in. They asked my day center’s coordinator whether either she or my support coordinator can come the next day for proper handover.

After a month, we will have a review of how things are going. They made it clear that this is not for the staff to decide I need to be moved out again, but for us to discuss ways the staff could possibly better accommodate me.

I am very excited to go to Raalte! My husband may ask for time off work to move me, especially since this week is also the week we’ll meet with the solicitor for property handover on the house we’re buying. It all is a bit stressful still, but I”m so glad I’ll finally find a place that’s not for independence training or treatment or the like. Finally, I’ll be able to stop merely surviving and start living.

Song Lyric Sunday: Cowboy

Posted on by Astrid

It’s Sunday and that means it’s time for another installment of Song Lyric Sunday. I don’t participate each week, but this week, the theme was easy. For the theme of Cowboy/Gun/Hat/Horse/Western, I am choosing one of the songs on my Country playlist on Spotify. I don’t remember how I first learned about this song, but its meaning definitely speaks to me.

Song Title: Faster Horses (The Cowboy and the Poet)
Singer/Songwriter: Tom T. Hall
Release Date: 1995

He was an old-time cowboy, don’t you understand
His eyes were sharp as razor blades his face was leather tan
His toes were pointed inward from a-hangin’ on a horse
He was an old philosopher, of course
He was so thin I swear you could have used him for a whip
He had to drink a beer to keep his britches on his hips
I knew I had to ask him about the mysteries of life
He spit between his boots and he replied
“It’s faster horses, younger women,
Older whiskey, and more money”
He smiled and all his teeth were covered with tobacco stains
He said, “It don’t do men no good to pray for peace and rain.
Peace and rain is just a way to say prosperity,
And buffalo chips is all it means to me.”
I told him I was a poet, I was lookin’ for the truth
I do not care for horses, whiskey,
Women or the loot I said I was a writer,
My soul was all on fire
He looked at me an’ he said, “You are a liar.”
“It’s faster horses, younger women,
Older whiskey, and more money”
Well, I was disillusioned, if I say the least
I grabbed him by the collar and I jerked him to his feet
There was something cold and shiny layin’ by my head
So I started to believe the things he said
Well, my poet days are over and I’m back to being me
As I enjoy the peace and comfort of reality
If my boy ever asks me what it is that
I have learned I think that I will readily affirm
“It’s faster horses, younger women,
Older whiskey, and more money”
“It’s faster horses, younger women,
Older whiskey, and more money”

Working On Us Prompt: Sleep Disorders

Posted on by Astrid

The past few days have been pretty busy, so even though I did want to blog, I hardly found the time. Now it’s already latish evening too.

Today I’m once again joining in with Working On Us, for which the prompt this week is sleep, insomnia and other sleep disorders.

As a child and teen, I suffered from insomnia a lot. I would often be awake for the whole night or hardly sleep at all. On week-ends, I sometimes made up for it by sleeping in, but I was definitely chronically sleep deprived. Though my parents sometimes suggested, and I don’t know whether they were joking, that I take valerian or melatonin, I wanted nothing of it. In fact, when I was going in for eye surgery at age seven or eight, I refused the tranquilizer they offered us before the operation. I also constantly fought the anesthesia.

When I was 20, I sought treatment for my insomnia for the first time. My GP prescribed temazepam, the most commonly-used sleep medication here in the Netherlands at least at the time. I was very scared when first using it, being that I’d not taken any medication in years, not even paracetamol.

I think that what lay underneath both my insomnia and my refusal to take medication for it, was an intense fear of losing control. I was, after all, pretty compulsive particularly as an older child and teen.

My sleep issues escalated in 2007, when I lived on my own in Nijmegen. Though I didn’t sleep less than I had as a younger person, I did suffer from the effects of sleep deprivation more. When I was admitted to the psychiatric hospital, the first medication I was prescribed was again temazepam. Then followed another few benzos and even levomepromazine (Nozinan), which is normally only used for palliative sedation.

I had to take “twilight anesthesia”, which means high doses of benzos, several more times prior to procedures and chose them over the pain that would otherwise ensue. However, I still had terrible fear when I “awoke”.

Other than insomnia, I’ve had an assortment of other sleep issues. My husband said at one point that I have hypersomnia, because I slept so much. This was probably down to a combination of medication, vitamin and iron deficiencies and lack of structure.

I am a sleep talker and I snore too. The snoring got slightly better as I lost weight last year. I’m not sure whether it’s worsened again since I’ve gained weight back up again. The sleep talking comes and goes with stress.

Lastly, I suffer from vivid dreams and nightmares. They’ve gotten a little better now that the long-term care situation is more or less settled, but during times of stress, I very often awaken in a state of shock because of vivid dreams. That is, I’m not 100% sure they’re REM sleep dreams or night terrors (which happen during stage 4 sleep). I’ve never had a sleep study done either.

Books I’d Add to My Personal Library

Posted on by Astrid

Today’s Top Ten Tuesday is about books you’ve read that you’d add to your personal library. What is meant are books that you don’t own a physical copy of and wish you did. Well, I can’t quite use physical books, as I can’t read print and Braille books are very clunky. However, there are still books I wish I owned that I borrowed from the library. Here goes.

1. Alice in Wonderland by Lewis Carroll. I read it in its Dutch translation in one of my last years in primary school and, though I didn’t enjoy it that much at the time, I’d love to read the original English right now. My father read it in English at the same time that I read it in Dutch.

2. Winnie-the-Pooh by A.A. Milne. My father read my sister and me the best Dutch translation by Nienke van Hichtum. This yet again isn’t a book I’d necessarily want a physical copy of, though that’d be nice, but I’d love to read it in its original language.

3. Brave New World by Aldous Huxley. I read this in my senior year of high school. Though I easily accessed it online back then, legally or not I’m not entirely sure, I would love to own a copy.

4. I Never Promised You a Rose Garden by Hannah Green. I borrowed this one from the UK’s National Library for the Blind and actually read it as a physical Braille book. Back then, you could send Braille books free of postage anywhere and the NLB offered its service to international customers. Bookshare, the U.S.-based online accessible book service, at the time didn’t, which was the main reason I used the NLB. I loved this book.

5. Planet of the Blind by Stephen Kusiisto. Another book I borrowed from the NLB. I loved how much I could relate to Kusiisto’s experienfce, going blind gradually from the same eye condition I suffer from.

6. Aspergirls by Rudy Simone. I had this book as an eBook, but lost it when I moved from Adobe Digital Editions to the iBooks app on my iPhone. I didn’t actually finnish this book, but would love to.

7. The Hitchhiker’s Guide to the Galaxy by Douglas Adams. I read the first book in this series in its Dutch translation at age twelve. Though I really don’t think I’ll ever read the other books, as they get really weird or so I’m told, I’d love to have a copy of this one.

8. All of Astrid Lindgren’s books. I don’t know whether they’re available in English, so I’d go with the Dutch translations.

9. Diary of a Young Girl by Anne Frank. I read it in Dutch when I was about thirteen, but I borrowed it from the library back then. I’d love to own a physical copy of both the original Dutch and the English translation.

10. Born on a Blue Day by Daniel Tammet. This was an intriguing autobiography by a man with Asperger’s. I read it in its Dutch translation before I had access to many English-language books and would love to own a copy of the original English.

Which books would you add to your personal library?

Recent Reads (August 2019)

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I discovered the It’s Monday? What Are You Reading? (#IMWAYR) linky a few weeks ago. I was at the time reading a lot, but not enough to make this a weekly theme, so instead, I chose to participate the last Monday of the month with my monthly reads. I was hoping they’d be more than a few, but no such luck.

I read only three books in the past month. That still is more than my average, I think. I did start a couple of other books, but didn’t get far enough into them to judge them.

First, I read Attachments by Rainbow Rowell. I was inspired to read it by a fellow blogger who confessed she hadn’t read Rainbow Rowell. Neither had I, even though Fangirl has been on my to-be-read list for years. I chose to read Attachments first though, because it seemed more geared towards my age group. Then again, at times I really love young adult fiction, so I don’t really know what I was thinking. The book definitely didn’t disappoint. Occasionally, it dragged on a little, but for the most part, it was hilarious.

Then I read Don’t Wake Up by Liz Lawler. This was the polar opposite of Attachments. Not hilarious at all and it definitely didn’t drag on. It was a true page-turner. I wrote a review about two weeks ago.

Then I didn’t read much for the next two weeks. I managed to finish one book, Angels in Our Hearts by Rosie Lewis and Casey Watson. This is a collection of moving short foster care memoirs. They definitely didn’t disappoint either, though I took some time to finish the book. I had never read anything by Rosie Lewis but had enjoyed reading Casey Watson for years.

For this reason, I decided to buy another book by Casey Watson, A Boy Without Hope as an audiobook. I had intended to read it in the ParaTransit bus to and from day activities, but the narrator’s voice is hard to understand and pretty much impossible to decipher in noisy environments. It was my first-ever English-language audiobook and will most likely not be followed by many more.

Next on my reading list is The Fault in Our Stars. It’s been on my TBR list forever and I was originally hoping I could finish it before today. Well, I’m not nearly finished, but I assume I will be next month.

The Daily Four (August 26, 2019)

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Over at A Guy Called Bloke, there’s a new meme called The Daily Four. I found the questions very inspiring, so I’m participating today.

What was the worst thing you did as a child?
I wasn’t a very naughty child, but my parents claim I terrorized the family. Being autistic, I’ve done a lot of destructive things during meltdowns. I ran away quite often and, according to my mother, was physically aggressive towards her as a teen. One day in particular, I remember ruining my sister’s birthday party (I think it was her 10th birthday) with my meltdown.

Growing up, what was your ideal dream job and did you bring that to a reality at all?
I’ve always wanted to be a writer. Though I only had one piece published in an anthology, I am pretty sure that blogging is a dream come true. I always thought that, like Anne Frank, I’d have my diary published someday. I guess I didn’t realize how unimportant my life is compared to hers.

What were the things you both liked and hated about your schooling?
I was often bored at school during my years in special education, but I liked it there nonetheless. At least I had friends, something I cannot say of my time at grammar school. What I most hated though, was the loyalty conflict I had, because my parents were in constant fights with my school over my needs.

Where there is a will, there is a way! Do you agree?
Yes, usually. Some dreams are unrealistic, but there’s always a way to come close. For example, of course, I will never be a plane pilot, being blind, but if I wanted to, I could arrange to see the inside of an airplane. In fact, I did at age twelve.

#WeekendCoffeeShare (August 25, 2019)

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It’s Sunday, yay. I am once again linking up with #WeekendCoffeeShare. I just had a cup of green tea and a glass of water with my evening meds. Let’s catch up.

If we were having coffee, I’d share that I am mostly excited. On Tuesday, I heard through my support coordinator that I’d been accepted into a long-term care facility. It’s the one in Raalte that I’ve shared most about. Raalte is a little over an hour’s drive from my current home and nearly 1 1/2 hours from the house we’re buying, but so far my husband seems okay with it. He asked to see the place, so we were planning on driving there this week-end for a quick look around the grounds. Then the weather got in the way, as it’s too hot to drive for that long.

If we were having coffee, I’d also update you on the house-buying process. The financial aspect is nearly finished, so most likely it’ll indeed all go through.

If we were having coffee, I’d share that my parents were in the area today. My father bought some type of outdated physics measuring device from when he was in university or so it seems. We met our parents near the house we’re buying. They seemed content with it.

If we were having coffee, I’d share that we (as in, multiple me) are still feeling a little conflicted about the whole thing. I guess it’s mostly our wish to conform to our parents’ image of us. We could finally show off something about ourself, being homeowners soon, and yet we’re choosing to live in long-term care instead. Of course, I haven’t told my parents yet, but they’ll find out sooner or later anyway.

If we were having coffee, I’d then proceed to talk up some light-hearted stuff. I’d share what I’ve been reading (look for a post on that tomorrow). I’d also share that I’ve been enjoying various blogging prompts over the past few weeks. I love venturing out into new territory with stream-of-consciousness writing and trying my hand at poetry.

How have you been?