Nuts! #SoCS

Posted on by Astrid

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.

November 2019 To-Be-Read List

Posted on by Astrid

I haven’t read that much in the past few months, but this week, I’m enjoying reading again. I discovered a To-Be-Read list linky, so am linking up there. I still have a huge pile of books I’d like to read or am reading but haven’t finished. Here are a few I’m planning on reading this month.

1. Matilda by Roald Dahl. I think I said before that I read it a ton of times in Dutch as a child, but now I’d like to read it in English. I’m choosing the audiobook version narrated by Kate Winslet.

2. Scars Like Wings by Erin Stewart. This one has been on the list of books I can’t wait to read for months. It was published last month and I fully intended on buying it on Kindle as soon as it came out. That didn’t work though, as I don’t have my husband’s current credit card details in my account yet. Just now, I had the amazing idea of checking whether the book is on Bookshare before I buy it once I do have my husband’s payment details. And guess what? It is! This sounds like such an amazing book.

3. Left Neglected by Lisa Genova. I started this one a few months ago, but never got beyond the first chapter. Not because I didn’t like it, but because other activities got in the way of my actually reading.

4. Unthinkable by Helen Thomson. This month is somehow dedicated to nonfiction. I love the topic of this book. As you can see, medicine is my thing.

This is another book I’m partway through already. I really want to read some new stuff too, but can’t think of any right now. I mean, of course, I have a huge TBR pile, but I don’t want to up the pressure by forcing myself to read more than I comfortably can.

5. Preemie Voices by Saroj Saigal. This is a collection of letters from people born very prematurely in the late 1970s to early 1980s. They share their experiences and advice for parents of currrent day preemies. I was a preemie too, slightly younger but now at the average age the preemies in this book were when they wrote the letters. I feel there’s a lot I can relate to in this book. Even more than when I started reading it some five years ago when it was published.

What’s on your to-be-read list for this month?

Validating Jane?

Posted on by Astrid

On Saturday, it’s the twelfth anniversary of the mental crisis that landed us in a psych hospital. As those who’ve checked my “About” page or those who’ve known me long-term know, this hospital stay took 9 1/2 years. Then we were kicked out for allegedly being too dependent.

We fought a long battle for the right care. In a way, it started that very day, November 2, 2007, or even before. It hopefully ended when we moved into the long-term care facility we now live in on September 23, 2019.

Most of us are relatively happy here. Content, at least. At least one of us though isn’t. Jane is still telling us to get a real life. To give ourselves a good kick in the behind and go to university, find a jjob and above all, live fully independently. She doesn’t even want us living with our husband, as we could be manipulating him into getting us care.

Today, I’ve been thinking. I recently joined a Facebook group for DID that subscribes to the philosophy of managing dissociative symptoms by thinking of each of your system members as their own individual. We need to work for the betterment of the entire system.

In this light, I’ve been thinking of how to validate Jane. She’s been saying “No” to our every attempt at getting care ever since, well, since she emerged in 2001. I wonder whether she’s “just” an introject, as our parents hold similar views to hers, or there’s more to it.

I remember once, when we’d only been diagnosed with DID for a few months or maybe a year, so in 2011 I think, our then therapist saying that Jane represents our healthy side. Another therapist called her a punitive parent. That never sat well with any of us, but neither does seeing her as the healthy adult. After all, why then does she minimize our every struggle? Isn’t vulnerability part of being an adult, too?

I’m wondering whether we’re doing more than just her a disservice by being in the care facility. I don’t mean we need to leave, but I realize most of us, including me, would like a more enriching life. Many of us feel bored at day activities.

Of course, our recent (and not-so-recent) attempts at doing something to enrich our life, have usually failed. I mean, we could be committing to a class at college, but that hasn’t been a success in ten years. I’ve been looking at writing courses, but they are pretty expensive and I don’t know they’ll actually make me a better writer. I want to go to the gym or horseback riding again, but don’t know whether I could commit to that on a weekly basis considering even just the limits of the ParaTransit system here. Ugh, I’m not sure how to get out of the boringness of lying in the sensory room for over an hour each day, walking for maybe half an hour, and sitting on our ass the rest of the time. I don’t know whether that’s an entirely accurate picture of our day, but it feels like it is.

Clarissa

Today’s Accomplishments (October 29, 2019)

Posted on by Astrid

Last December, I wrote a post in which I shared my small (but important!) accomplishments for the day. I wanted to make this a regular feature, but didn’t. I am not promising it will be this time around, as pressure to do something every day or week with regards to my blog, usually overwhelms me to the point where I quit prematurely. Such was the case with the 31-day writing challenge this October and it’s been the case before. I’m however definitely hoping I can do these more often. Anyway, here are my accomplishments for today.

1. Took good care of my personal hygiene. It’s Tuesday, which means I start my morning routine all by myself and don’t get any help with my personal care. I usually take a quick shower then and often forget to put on deodorant, brush my teeth and hair. I not only took a more thorough shower than usual, but did use deodorant and brushed my teeth. I don’t think I brushed my hair.

2. Took my morning and evening meds, including multivitamin. I got the multivitamin added to my meds recently as I am deficient in folic acid (one of the possible reasons for my fatigue). I often have to remember to ask the staff for this one myself, as it isn’t in the med management system yet.

3. Had three relatively healthy meals. I had two slices of bread with chocolate spread on it for breakfast. That isn’t the healthiest possible choice, but it’s okay. I had two slices of bread again for lunch, plus a banana and a pear. For dinner, we had boiled potatoes, a hamburger and kohlrabi.

4. Walked twice today. Well, three times really, as I also took a short walk in the morning with the day activities staff and two other clients. I took a longer (about 20 minutes) walk in the afternoon with just the staff and took another walk with the living facility staff and one other client in the evening. I don’t have my Fitbit anymore, as its battery is dead and I can’t find its charger, but I’m confident I met my goal for active minutes for the day.

5. Did a short mindfulness meditation. Okay, it took only three or four minutes, but the act of starting a guided meditation in itself is already an accomplishment.

What have you accomplished today?

A Night-Time Crisis

Posted on by Astrid

So I really need to get something off my chest. Yesterday was a mostly good day, as you can see from my previous post. However, in the evening, we landed in a pretty bad crisis.

It started out with the evening staff wishing me goodnight at 9:45PM. I still had to brush my teeth, so she asked whether I would manage. Normally I do, so I said “Yes”. When I was done brushing my teeth, my gums hurt from the inflammation and I was considering asking for paracetamol. I mean, I could’ve waited till the pain got severe, as I did the previous night, but then I’d have to bother the night staff.

I also realized the evening staff had left the light on. I had asked her to switch it off (it is a truly stupid switch which I can’t work), but she had asked me how I’d manage without light if I wasn’t ready to go to bed yet. Well, like, how I manage virtually all the time without light. I have light perception, which can be useful but in this case was more bothersome, in that it meant having to go to bed with the lights on. I can write blog posts and do basically everything with the lights off, but I cannot sleep with the light on. So inbetween the argument of whether I would be comfortable in the dark, the staff actually forgot to turn off the light.

As it was only 9:50 and the staff are supposed to be here till 10:15PM, I went looking for the evening staff rather than push the call button. She was gone. Then I pushed the call button. No response. In the next 30 or so minutes, I got increasingly panicked. I heard the buzzer go off so assumed the evening staff either must be somewhere but not care, or she’d left the phone with the buzzer in the house rather than having given it to the night shift. So how would I reach anyone now?

I was very panicked, engaging in self-injurious behavior, screaming and shouting. I was so scared and angry at the same time. If the staff are supposed to be here till 10:15, why did she leave by 9:50?

At one point, I somehow opened the door to leave the unit. Our unit is at the top floor of the building. It is sort of locked, in that my fellow residents can’t work the key to open it. I thought neither could I but somehow I can.

I ran out the door, intending on I don’t know what, going outside or something. My first response in panic is either fight or flight, and in this case I utilized flight quite literally.

A staff from the downstairs unit found me crying at the top of the stairs. Another staff from our neighboring unit came to the rescue too.

It turns out the night shift doesn’t start till 10:30. This is one night staff who caters to the entire facility, so she isn’t physically present on my unit most of the time. Well, how am I going to reach a staff in an emergency if the evening shift leave at 9:50 (or 10:15 in an ideal situation) and the night shift doesn’t come on till 10:30. My staff eventually found the solution of giving their phone to the neighboring unit, where staff is available till 10:30.

Finally, the night staff, who had joined the other two staff in helping me, gave me my paracetamol, plus a lorazepam to calm my anxiety, and turned off my light. Nonetheless, I didn’t sleep till around the second time the clock hit 2:30AM (daylight saving time ending). The night staff, though she hardly knows me as she only works nights, was nice enough to sit by my bedside and comfort me for a little while.

Shark!

Posted on by Astrid

Stuffed Shark

So my husband came over today. I had originally planned on visiting him for the week-end, but then I’d have to go home to the care facility by ParaTransit taxi again. You get only 700 km at a reduced rate each year and the one-way drive from my husband to here is 72 km. This means that I can’t go each week for the rest of the year. So my husband proposed to come over for a visit.

We went to IKEA in the nearby city of Zwolle. I was looking for an office chair to use in my corner of our house. The way IKEA is constructed, you need to walk past a lot of other stuff before you can get to the desks and office chairs. This meant we could also check out the lounge chairs. I took my lounge chair (well it was originally my husband’s family’s but I used to sit in it all the time) to the care facility with me and would like a lounge chair at my husband’s house too. We couldn’t buy one right away, but we did see some good, some bad and some really rubbish ones.

At one point, we came across the soft toy aisle. My husband showed me a giant stuffed elephant and then an equally large stuffed shark. The littles were totally in awe! He asked us whether we wanted to buy the shark and we shouted “Yes!”. So we now have a stuffed shark. We took most of our stuffies to the care facility with us, so we’re very happy to have a soft toy at home with our husband too. We joked that of course we have our husband, but well, that’s different.

We also got some nice candy. Some of us were upset because we couldn’t have Swedish meatballs. Not that our husband said so – he didn’t explicitly say they were on offer, but he knew we knew about them -, but we had already had pancakes for lunch and figured it wasn’t healthy to have two meals. Everyone was content again when we got the candy.

We also ate out at a nice Indian restaurant. The food was delicious!

“POP!” (Pop of Positivity): An Affirmation and an Uplifting Song

Posted on by Astrid

Today, I am feeling better than I was yesterday. I slept really well last night and also had some rest in the snoezelen® (sensory) room. In the afternoon, the behavioral specialist for my facility came by for a little chat. She reassured me that this is not a temporary placement and I won’t have to leave.

After coming home from day activities, I browsed some of the blogs I follow. I came across a post on Pop of Positivity. This is a weekly challenge by Beckie of Beckie’s Mental Mess for us to share what inspires and uplifts us. This week, she challenges us to come up with an affirmation and a song that brightens our mood.

I checked out affirmation apps this evening too. None are very good. I mean, ThinkUp sounds good except that it won’t let me select affirmations from other categories than the default “Recommended for you” one. This seems to be a VoiceOver issue, as I already have a premium subscription (since I bought it a long while ago and it hasn’t expired yet) so it can’t be that. Anyway, the very first affirmation that popped up (no pun intended) for me, really spoke to me.

“I love myself, respect myself and accept myself exactly as I am.”

As for the song, I’ll go with one of my all-time favorite songs. It is I’m a Survivor by Reba McEntire. I know this song wasn’t written by McEntire and isn’t about anyone’s personal life, but it definitely speaks to me.

Attachment Issues and Other Ramblings

Posted on by Astrid

Hi people, how are you? I hope you’re doing better than I am, as I’m basically feeling pretty crappy. I tell myself I need to enjoy the good moments, good days even, here in the care facility. I believe that if I don’t feel happy here, then the staff could just as easily kick me out and make room for another person. I know paradise doesn’t exist, so can’t I just be happy with what I have?

That’s not the problem though. I’m not looking to leave this place or thinking I can have a better life elsewhere. I can’t. But still, I’m unhappy at times. Then again, isn’t everyone? And yet I beat myself up over it, which leads to more unhappiness, which leads me to beat myself up even more.

At the root of all this seems to be a deep-seated belief that there’s no place I’ll ever fit in, and if I do believe I fit in, the staff won’t agree and will kick me out. I feel as though I have to prove that this place is perfect for me – which it isn’t, of course. But it’s as close to perfect as can be and that’s enough for me. But is it for the people around me?

Last night I barely slept for two hours. At 5:30AM, I accidentally sent out a video call to my husband while trying to distract myself. He called back almost immediately, as he was at work already. He assured me that he doesn’t want to get rid of me and my staff don’t want to get rid of me either. I was happy enough with that that I could sleep.

This morning, a relatively new to me staff woke me up. She asked whether I’d manage getting started on my personal care. Normally, I get some help on Wednesdays, but I was too tired or confused or scared to ask her for help, so I just went about doing my morning routine. I was feeling pretty out of it, but I couldn’t explain.

The rest of the day was okay. I went to the dentist this afternoon for a check-up and because I’ve been having some pain. I have inflamed gums, but other than that my oral health is good. I was told I brush my teeth well, something I attribute to the electric toothbrush my husband gifted me for my birthday. Now I will need to use toothpicks too. One filling that I’ve had for like fifteen years needed replacement, but that will happen at my next appt.

Laura’s Song Challenge (October 21, 2019)

Posted on by Astrid

Oh my, and once again I didn’t write much at all in the past week. A lot is on my mind, but I can’t seem to put fingers to keyboard to express it.

I first heard of Laura’s Weekly Song Challenge many weeks ago, but could never seem to find songs that matched each of the three themes. Today I can. I wasn’t tagged, but Laura invites everyone who wants to consider themselves tagged. So here goes.

1. Post a song that has either in title or lyrics the name of a state in the US.

2. Post a song that either in the title or lyrics the name of a town.

3. Post a song that either in title or lyrics has the name of a country or continent.

I originally thought that this last song was also by Truck Stop. It isn’t, but it is on the same CD my husband used to play in the car a ton of times in like 2012. I love most of the songs on that CD. I don’t know whether any of these have captions or lyrics attached, and I personally don’t understand all of the lyrics either. Even if you don’t understand enough German to get the lyrics, I wish you lots of fun listening to these songs.

I am not tagging anyone, as everyone I’d consider is already tagged, but if you read this and would like to participate, please do.

Working On Us Prompt: ADHD

Posted on by Astrid

It is Wednesday and that means Beckie has launched another topic in the Working On Us Series. I badly wanted to participate last week, when the topic was (complex) PTSD. However, I felt too low on energy then. This week, the topic is ADHD.

I was never diagnosed with ADHD, so in this sense I have little to add here. I, however, do experience many symptoms that could be signs of particularly inattentive-type ADHD. They overlap a lot with autistic symptoms though, which I do have a diagnosis of. At this point, I don’t think it’s necessary for me to get an official ADHD assessment. Most groups for adult ADHD/ADD welcome self-diagnosed individuals and those who are questioning, like me.

Symptoms I relate to include restlessness, both physically and mentally. I’m not necessarily hyperactive in that I blurt out random things, but I do fidget like all the time and my mind is usually racing. That is, it is either racing or completely shut off, like when I’m low on energy.

The same really goes for impulsiveness: I’m not impulsive in the typical way, but I am in less typical ways. For example, every need feels urgent to me. This applies to basic human needs like eating – when I feel hungry, it feels as though I’m literally starving -, but also to other wants and needs. This could be related to autistic sensory processing issues, but I believe it’s more than this, especially since it doesn’t just apply to sensory or bodily needs.

As for inattentiveness, I can’t usually pay attention to something unless it really interests me, in which case I hyperfocus and become totally absorbed to the exclusion of other activities. I know this is an ADHD trait, but it is also common in autistics and I’ve always wondered whether everyone doesn’t have this issue to an extent.

Lastly, my executive functions seem to suck. My memory for random words or digits is about average and used to be above-average, but for everyday life experiences (particularly others’ experiences) and daily tasks, it’s pretty bad. I was told when I did a behavioral memory test (where you have to retell a short newspaper story) as part of my autism assessment, that my memory is detail-oriented.

With respect to planning and organizing tasks, I suck at those and always have. I used to do pretty well when faced with a deadline, but even then I struggled to organize tasks. I recently read that ADHD children often learn to do tasks on high adrenaline. The reason is often that neurotypical adults assume that, if a child is capable of something relatively difficult once, they must be able to do it all the time and must be able to do all assumed-to-be-easier tasks in that category. For this reason, neurotypical adults often force ADHD children into doing tasks they cannot yet do, assuming they can, and as such cause the child high anxiety. This causes an adrenaline rush, which temporarily increases the child’s ability to perform.

When I read this conversation on Facebook (it was originally posted to Tumblr but I don’t know where), so many bells rang in my head. Like many people referred to in this conversation, I can sometimes do seemingly more complex tasks while not being able to do simpler tasks in that same category. I am also very inconsistent in my abilities, usually being able to perform a task under pressure better, but with less pleasure. For clarity’s sake, this conversation was meant to explain the harmful effects of forcing children to do tasks they feel they are not capable of.

Since I do not have an ADHD diagnosis, I’ve not had any treatment specific to it. I’m also not on ADHD medication. I, however, find that some coping strategies that work for ADHD individuals, do work for me.