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)

Posted on by Astrid

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)

Posted on by Astrid

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?

It’s My Choice

Posted on by Astrid

Yay, I got accepted into a living facility. The one in Raalte that I visited about six weeks ago. I will hopefully move before I’d otherwise move to the house my husband and I are buying in October.

It is mostly very exciting. I love the place and am really glad that the physician, psychologist and the team all agreed that I’d be a good fit for the place.

But… There is of course a but. I haven’t told my parents yet. I told them I got long-term care funding, but told them it makes it possible for my husband and me to live together wherever we want, not being restricted by our local authority. It could do that too, but that’s not the plan. And I didn’t tell them I’m moving into a care facility.

They will hopefully say that it’s my choice. That’s the best response I can get. Not that they support me, but that it’s my choice and I’m an adult so I’m allowed to make that choice. After all, they still feel I don’t need 24-hour care. They still feel that I’m just blind and extremely intlligent and using my IQ to manipulate the world into providing me care.

Well, so what? Of course, I don’t want to be manipulating everyone into providing me care. I don’t want to be a little attention-seeker who thinks the world owes her a living. I wish I could snap out of my need for care and live a successful life by non-disabled standards.

At the same time, maybe if I didn’t care that I’d have to be sedated to the point of sleeping all day, I could do with less care than I’ll be getting in the living facility. As someone once asked, how can you literally need 24-hour care, since you’re (hopefully) sleeping during the night? This person was by no means trying to suggest that sedation could lessen my care needs, for clarity’s sake, but it could. And I’m making a choice not to sleep the day away. If you think that’s me being manipulativve, fine by me. That’s your choice.

I am writing this post for today’s Daily Addictions. The prompt is “Choice”.

Working On Us Prompt: Self-Care and Personal Hygiene

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This week’s prompt on Working On Us is about self-care. I initially thought of self-care as those things we do to pamper ourselves, but then when I read the questions, I realized Beckie means basic self-care. You know, personal hygiene, such as showering or brushing your teeth.

I definitely have always had trouble with this. Part of it may be due to my lack of awareness of my appearance, which may be due to both blindness and autism. However, the fact that I don’t always shower or brush my teeth regularly, certainly isn’t.

I have always had trouble with proper personal care. When I was about fourteen, my high school tutor got complaints from my classmates that I smelled a lot of body odor. He told me I really had to develop a personal hygiene routine, but didn’t explain how to go about it. He was my PE teacher and said that he personally showerd twice a day. So I initially thought I had to do that as well, so the next day, I jumped in the bath at 6AM. My parents were not amused. With my parents, I finally agreed on a routine of baths or showers three days a week, on Sunday, Tuesday and Thursday evenings. That way, if I went to school, it’d never be more than 48 hours since I’d had a shower or bath.

My parents still didn’t explain how to wash myself. Honestly, now that I’m 33, I still get told by my husband at times that I don’t do it properly.

The problem of course wasn’t just that my parents didn’t teach me. After all, presumably my sister knows all about hygiene. It was also that I had an aversion against personal hygiene activities. Here is where my mental health is involved. Like, I have executive functioning issues on the best of days, making a “simple” shower very difficult. When I’m depressed, I cannot cope with the stress of having to shower.

My lack of self-care wasn’t even picked on when I was first assessed by a psychiatrist. Maybe he did notice I smelled, or maybe that particular day my body odor wasn’t too bad or I’d had a shower. If he did notice, he didn’t tell me so or write it in the report. Neither did any of the next so many psychiatrists and psychologists I had. I only found out that my psychologist at the resocialization unit in Nijmegen had noticed because it was written in my long-term care application at the time, that I didn’t get to see until we applied again last year.

As for brushing my teeth, I hated toothpaste. I still do, but at age 18, finally forced myself to use it. I never brushed my teeth properly until I got an electric toothbrush for my birthday this year. Now I’m still not sure I do it right, but I at least brush for the required two minutes. Interestingly, the elctric toothbrush is less horrible sensorially than the handheld one.

I find it interesting that, though lack of personal hygiene is part of an assessment of mental functioning, so few mental health practitioners take the time to discuss it with their patients. Like, when I was in the mental hospital, no-one offered to teach me personal hygiene. Not even when the dentist recommended I get help brushing my teeth. They said it was my responsibility. I really hope that, when I’m in a care facility for people with developmental disabilities, that will change.

#FOWC: Diet

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Today’s Prompt for #FOWC is diet. I have no experience following any diet. Not even a “No-Diet” diet such as Slimming World. I know, I do need to lose weight. I do need to moderate my food intake. I do know that Slimming World, Weight Watchers and the like can help some stick to a habit of moderation where it comes to food. However, I’m not sure I’m ready to stick to the diet.

I really want to stick to a plan where it comes to food, but I don’t want it to become an obsession. And, honestly, food can quite easily become an obsession, because in my thoughts, it already is.

I think I need to allow others some control over my food intake. It may be best if I take full responsibility, but given how badly my overeating can get, I don’t believe that’s realistic right now.

I hope that, once I move into supported housing, I will have a more structured day where it comes to my meals and snacks. I really hope I’ll subsequently be able to eat less. After all, whichever diet you follow, that’s the real deal.

My husband and I were talking about a care facility that wants me, and he asked whether they have side-by-side bikes. I think they do. They certainly do have a stationary bike. We were discussing getting rid of my elliptical, because there’s not enough room in our new house to put it if I only use it on week-ends. I was thinking of taking it to the care facility. Maybe they can use it at the day center that’s near the living facility. That way, I’ll still be able to go on the elliptical.

I, after all, didn’t say I would never lose weight again. I do want to, but now is not the right time. Then when is, you ask? Well, like I said, I’m genuinely hoping that, once I go to the care facility, I will be able to stick to a diet and exercise plan with the help of my staff.

#WeekendCoffeeShare (August 18, 2019)

Posted on by Astrid

It’s Sunday. This usually means I’m joining in with #WeekendCoffeeShare. I didn’t last week, because I couldn’t find the time amidst reading and writing other posts. Today though, I’m joining in again.

I am full from all the French fries and snacks I had this evening. I don’t think I can manage to drink a cup of coffee or even green tea right now, but if you’d like one, grab a cup and let’s catch up.

If we were having coffee, I’d ask you how your week has been. Mine has been a truly mixed bag. I felt rather stressed out at day activities a lot of the time, particularly on Tuesday and Wednesday. On Tuesday, a staff who would’ve been in charge of one group by herself was off sick. For this reason, the clients of that group had to be divided between the other groups. Besides, the staff who was sick, ran the kitchen group, so we had to do our own dishwashing and all. This was all a bit chaotic and I felt very off most of the day.

Then on Wednesday, we had an argument with one of the staff. She was trying to make me go to a rather useless fitness course. I had been dreading going to the course for weeks. I don’t think it’s a bad idea to have a fitness course at day activities, but it involved meditation and information about nutrition and health. No problem, but all my fellow clients are severely intellectually disabled. I don’t think that they have no right to benefit from this class if they feel it’s worth it, but I felt it didn’t fit me.

Thankfully Friday was better and we had a lot of fun.

If we were having coffee, I’d share that yesterday, my husband drove all the way to Schiphol airport to find a bank that was open on Saturday past 2PM, so that we could make the final arrangements for our mortgage on the house we settled on. This merely involved showing our IDs so the bank knew we were who we said we are. Then only the people at Schiphol were too busy to help us. It’s understandable that banks need you to physically show up with your ID before they serve you, but then it sucks that this can only happen during office hours. Officially we’d even have to show up together, but my husband found a way around that. Now my husband is going to try to drive by the bank in one of the cities he has to go to with his truck tomorrow and I’m going to the nearest bank with my mother-in-law on Wednesday.

If we were having coffee, I’d share that we had fries each day of the week-end. We always get ourselves fries on Friday. Then yesterday on the way back from Schiphol, we found ourselves a nice restaurant to eat at. I had a huge burger there. Then today, my father-in-law is visiting us (he’s watching TV with my husband right now) and he brought fries too.

If we were having coffee, lastly I’d share that I’m not as inspired or creative anymore as I was last week. Then I spent all the time actually doing sort-of-useful activities, including reading, blogging and such. Now I’m still not totally passive, but I”m feeling a slightly lower mood coming on.

How have you been?

Co-Consciousness #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Co-“. I immediately thought of co-consciousness. This is a term in the DID (dissociative identity disorder) / multiple personality community referring to more than one personality sharing memories or other information. It is often desired as a goal in treatment. Another one is cooperation, in which alters are able to work together for the betterment of the entire system of personalities and the body.

Co-consciousness is often implied to mean a system has less severe dissociation. I mean, since amnesia (inability to recall important information) is a criterion for DID, technicallyy those who are fully co-conscious cannot be diagnosed with DID. Then again, there are a lot of degrees of amnesia. For example, one is time loss, where someone “wakes up” to discover their alter has done something they have no recollection of. However, identity amnesia also counts, where a person forgets their name, age, etc. Loss of skills also counts, where a person cannot for example ride a bicycle or car when a young alter is out in the body.

There is also this phenomenon called emotional amnesia. I have yet to find out more about it, as it seems to be very common in our experience. For example, last Wednesday, we were aggressive. Though I do know that we kicked a wall, I do not actually remember it or the feeling attached to it. That belongs to one of the other personalities.

We do aim to share information amongst ourselves. However, usually we cannot all be present at the same time. That is, of course we can, in that we’re all in this body and when for example I give someone my hands, another alter cannot be simultaneously holding our hands over our ears. That’s what our psychiatrist explained last year and it was so fundamentally new to us!

Co-consciousness and cooperation can be an end goal in DID treatment, but some systems choose to merge or integrate. There are also different degrees of integration or so I understand. I recently joined a support group on Facebook specifically for DID systems looking to integrate, even though that’s always been a very scary idea to most of us. It feels as though we’re getting rid of some of us, when really all of us are part of this system, inhabit this body.

As a side note, I can totally understand most regular #SoCS readers cannot fathom the concepts I just wrote about. I was even once told by people in a Dutch DID community that I knew too much for someone who’d only been diagnosed for a few months, when I mentioned the term “co-consciousness”. Clearly those people had never ventured out into the English-speaking DID community.