Weird or Creepy Interests

Posted on by Astrid

Today I have a lot on my mind, but not much I can put down into writing. To occupy you readers anyway, and to distract myself a bit, I’m participating in My Inner MishMash’s Question of the Day. The question is whether you have any interests most people consider weird or even creepy or gross.

Creepy or gross, no. I mean, yes, I’m interested in medicine, but not specifically in anatomy or bodily functions. I have some interest in genetic conditions, particularly rare ones, and of course I’m into psychiatry. Lately, I’ve been connecting the two and learning more about psychiatric aspects of genetic syndromes. I was fascinated when I was told one of my fellow clients has Christianson Syndrome, a form of X-linked intellectual disability that is similar in presentation to Angelman Syndrome. I at first felt weird googling the condition, but since the staff specifically told me about this client’s syndrome rather than me having overheard it, I felt okay in the end.

Weird, yes, definitely. I already commented on the original post that I’m into calendars and timekeeping. I still keep and cherish a twenty-year-old newspaper article explaining why the year 4000 shouldn’t be a leap year, among other things.

I also tend to get upset when people make calendar calculation mistakes, particularly when they do it on purpose. My husband likes to talk about 30th February, for example. As a teen, I used to calculate what day a given date fell on. I was particularly fascinated by dates before 1582, so that I could show people that I knew about the Julian/Gregorian calendar transition.

I also, when I still lived in Apeldoorn, loved riding random buses to memorize their route. Apeldoorn’s buses at least all used to go in an eight-shaped route, each time getting back to the station. That way, I’d never get lost even if I rode a bus I’d never been on before. Before I moved to Nijmegen, I had the bus schedule nearly memorized too.

Currently, I don’t have any weird or unusual interests that I’m particularly actively engaged in. However, when it comes to my “normal” interests, they do tend to be abnormally intense and detail-focused.

Do you have any weird interests?

#WeekendCoffeeShare (February 2, 2020)

Posted on by Astrid

It’s February, yay. I’m joining in with #WeekendCoffeeShare again, even though I’m not 100% sure I feel like writing. I had a lot of green tea and only one cup of coffee today. It’s interesting that, at my husband’s and in-laws’, I mostly drink green tea, whereas in the care facility I almost always drink coffee. Anyway, let’s catch up.

If we were having coffee, I’d share that this week was a hard one. I don’t even remember what I did on Monday. On Tuesday, I was in a near-constant panic at day activities. I eventually asked to go to the behavior specialist’s office to see if I could schedule an appointment with her to talk. However, the behavior specialist on my case wasn’t in the office. Another one was, but I couldn’t quite make it clear what I needed and so I went back downstairs.

That evening, I had another huge crying fit. I took a PRN lorazepam, but still didn’t sleep all night. In the morning, I kept crying. My assigned support worker informed me that the behavior specialist responsible for my care was on sick leave, but she called the one who’d been in the office on Tuesday.

She visited me at day activities at around 11AM and I talked for about an hour. I talked about all that I was overwhelmed by. Particularly, I felt that I need more support at day activities. This still needs some sorting out, but mostly I do now get an assigned staff member each day.

If we were having coffee, I’d share that from then on, I felt okay and haven’t had panic attacks or meltdowns. I do struggle with some level of overwhelm and anxiety, but it’s manageable.

If we were having coffee, I’d share that on Thursday, the family of a potential new client came for a visit. This stressed me out a little, because I thought another client coming to my home means less care for me. This isn’t the case, the staff said.

If we were having coffee, I’d say that I traveled by train to Arnhem yesterday. A transregional ParaTransit taxi drove me to Deventer station. There, a travel assistant was waiting to help me onto the train. She apparently needed to help someone in Arnhem next, so she actually traveled all the way to Arnhem with me rather than just helping me get on the train. My husband picked me up from the station at Arnhem again. It was a relatively comfortable way of getting eased into traveling by train again.

If we were having coffee, I’d share that my husband and I had pizza at our in-laws’ yesterday. Then today my mother-in-law would be driving me back to the facility, so she picked me up at my husband’s at 4PM. We first went to my in-laws’ house again, where we walked the dog and ate fried potatoes, broccoli and chicken. I had a Magnum almond ice cream for dessert.

If we were having coffee, lastly I’d share that I finally brought some of my soaping supplies to the facility with me today. One of our home staff was leaving this week, so I had originally intended to make her a soap earlier. Thankfully, she will be working at another home with this facility, so when I do make the soap, I can bring it to her.

How has your week been?

A Letter Explaining My Life Right Now

Posted on by Astrid

Today’s topic in 7 Days 7 Posts is to write a letter to someone explaining your life right now. I have been thinking about reconnecting with the head nurse from the psychiatric resocialization unit for a while. She was one of the most supportive people I ever met during my psychiatric hospital stay, but still, she was a bit prejudiced. Here is a letter to her.

Dear K,

How are you? I hope you are well. Do you still work for the psychiatric hospital? When I last spoke to L (my named nurse from the resocialization unit), she informed me that the entire Nijmegen long-term care hospital was closing and moving to Wolfheze. Do you work there now?

When I last wrote to you and L, I explained that I was living with my husband in the tiny village and going to day activities. I didn’t inform you that I was struggling. I eventually got kicked out of my first day center with this agency and transferred to another one.

Still, I struggled with independent living with my husband. My husband is a truck driver now and his shifts are like 12 hours a day. For this reason, we finally applied for long-term care funding at the end of 2018, which after a long battle was granted in June of 2019. As of September, I live in a care facility for people with intellectual disability in Raalte. I know you didn’t want me to go into housing for people with intellectual disabilities. Well, I am happy here.

We involved the Center for Consultation and Expertise again when I was struggling at my first day center. The consultant psychologist assigned to my case assessed my needs. Among other things, she concluded that I function emotionally at a level of around 6-18 months.

I go to day activities at a group for older people with profound intellectual disability, most of whom live with me too. I go for almost daily walks. I love to go to the snoezelen® room too. I also do a weekly cooking activity with the staff intern. It’s sometimes difficult to figure out activities I can do, because the other clients mostly just sit around and I almost need one-on-one support with most activities.

I am still married to my husband. We bought a house in Lobith, but this is mostly for him to live in and for me to go to on week-ends.

I still see the mental health team, but have decided not to pursue any formal therapy program for now. Dialectical behavior therapy, which I used to try, didn’t work out because of my autism and my dissociative symptoms. I don’t feel comfortable going through the assessment for dissociation though.

Anyway, hope you are doing well. I suppose L is around retirement age now, but if she still works at the hospital and you still see her, send her my warm regards.

Astrid

A Day I Will Never Forget

Posted on by Astrid

I’m a day late with this topic in 7 Days 7 Posts. The Tuesday topic didn’t appeal to me and besides, I was really anxious then. Yesterday I had a lot of meetings to discusss my anxiety and the reasons for it. I made it clear that I really needed some more care and particularly more consistency and clarity in my day. I went to bed at 8:15PM, having taken an Ativan to help me sleep.

Yesterday’s topic was to describe a day you’ll never forget. I already described how I met my husband sometime during the #AtoZChallenge last April. Another day I will never forget, though for less pleasant reasons, is the day I landed in crisis in 2007. I probably described that day a few times before already, but right now I can’t find where. If you’ve read this before, I apologize.

On November 2, 2007, I was in my parents’ city to get a landline phone I wanted to use in my student apartment. The reason I wanted a landline was the fact that I was scared of mobile phone radiation causing Alzheimer’s. It’s weird that now I use my iPhone like all the time and don’t worry about it much.

I had come to my parents’ the previous evening and was planning on going back home to Nijmegen that Friday afternoon. However, on the train station, I had a meltdown. The police were called and removed me from the station.

I went to the independence training home where I used to live until that summer. I wasn’t really sure what I wanted, but I needed to look up some phone number on my laptop. I knew I shouldn’t go back to my parents’, as they’d probably be angry with me.

After having called whoever I needed to call, I wandered around the training home neighborhood for some hours, not sure what to do. At one point, a fellow client at the training home realized I was struggling, so she offered me to come into her apartment and stay for the night, so that we could find a more long-term solution the following day. However, the staff came to her and told me to leave. They weren’t going to take responsibility for me.

At that point, I had another meltdown. I walked to the nearby bus stop, catching the 8:01PM bus to the train station. In my memory, it was still light outside, even though that’s not possible at such a time in early November. I called my support coordinator to let her know I was going to commit suicide. The bus driver overheard me and called the police.

I was terribly scared, because the police had kicked me off the train station that afternoon. However, I willingly went with them to the police station. They called someone called a community physician, who is in charge of triaging people not known to that city’s mental health agency. He was a really blunt man, telling me that I made people feel responsible for me in a way as if I was just seeking attention. He even used a kind of threatening voice when he said he was going to call the crisis service. I didn’t mind.

The crisis service psychiatrist and CPN came out to the police station. After assessing me, they asked me what I wanted. To this day, I’m not sure whether I really didn’t know what I wanted or felt too embarrassed to ask for help. After all, when talking to the behavior specialist for my current care facility yesterday, I also said I didn’t know what I needed even though I did. Anyway, the psychiatrist proposed that I be admitted to the mental hospital and I agreed.

Three Wishes

Posted on by Astrid

I’m trying to participate in 7 Days 7 Posts organized by Jessica from Daysixtyfive. That is, I won’t promise I’ll complete the challenge, as I’m having a nasty cold. Yes, again. I hope I don’t end up with a fever this time. That being said, if it doesn’t get worse than it is now, I’ll probably be able to do fine.

Today’s topic is about wishes. You have just been granted three wishes. What are they?

I initially thought that we’re supposed to have big, world-changing wishes like peace everywhere. Then I saw Jessica’s post and her first two wishes are just for herself and her family. Maybe we all are self-centered like this, so I don’t need to feel shameful about wishing stuff for just myself. Here goes.

1. Physical and mental wellbeing. I purposefully wish for wellbeing, not health, as the genie might interpret health to mean I want to get cured of my disabilities. I don’t. I want to remain blind and autistic and having mild cerebral palsy. I even don’t want to be cured of my dissociative disorder, in that I want to remain multiple. What I do want is to be is stable mentally, less anxious. I also want my chronic physical ailments to go away. And while we’re here, I wish this nasty cold away and not to return.

2. To be close to my husband. I would wish for a suited care facility in my husband’s area, so that I could visit him more often. A suited care facility would be much like the one I’m in now, with a day center on grounds, lots of sensory equipment, the staffing level for me to be able to enjoy regular leisure activities, etc.

3. Unlimited ParaTransit access. This was the first that came to mind after a care facility close by my husband. Bigger things like wellbeing hadn’t even come to mind yet. I could wish for an endless stream of money, so that I can hire my own taxi drivers, but I don’t think I’d feel any better then. However, the ability to travel wherever I want without having to worry about public transportation, is very high on my list of desires. Interestingly, for the cost it took to make all trains and buses wheelchair-accessible, the government could have made this a reality for all majorly disabled people.

What would you wish for if you were granted three wishes?

Carol and Jane

Posted on by Astrid

This week’s Reena’s Exploration Challenge is all about describing the interactions between (your) thinking brain and feeling brain as if they’re characters, perspectives or mindsets. In the theory of dissociative identity disorder, alters are divided into two categories: apparently normal parts (ANPs) and emotional parts (EPs). Some theorists refer to them as Daily Living and Trauma Fixated parts instead. Additionally, I have experience with dialectical behavior therapy, which has the concepts of rational and emotional mind and Wise Mind as the goal to integrate the two.

I don’t believe in the rigid ANP/EP divide and the alters I’m going to describe in the piece below, would most likely both be seen as EPs, even though they’re on opposite ends of a spectrum. You see, one of the main triggers for identity confusion for me is the inability to integrate my low functioning level with regards to my social and emotional development with my at least somewhat above-average verbal IQ. In this sense, Carol and Jane do represent thinking brain and feeling brain.

Yesterday I struggled. I got an official reminder from local taxes from when my husband and I still lived together in the tiny village. An official reminder means they’d previously sent out another type of reminder that doesn’t come with extra costs. This one did come with extra costs and the next step, if I don’t pay, would be a debt collector’s visit. I don’t know why the reminder was only sent to my My Government inbox and not to my husband’s and I didn’t understand the reminder. I texted my husband to ask him for help. By this time, Carol, the alter who is very emotionally immature and vulnerable, was already getting upset. Why don’t I just go under financial management and never bother with money again?

My husband was a little annoyed that I shoved this task onto his plate. For this reason, Jane, who wants to be the intelligent, successful, self-reliant one, said: “Okay, I’ll solve it.” Carol was still prominently present in my mind and she has difficulty thinking clearly. In the end, I paid off the tax debt, but put the wrong identification number in the Comments field. This means the tax agency won’t be able to identify me as the debtor, so it may mean I lost the money. It was €160.

From there on, Carol took full control of my mind. I cried my eyes out and really wished I could crawl under the covers, get a guardian, be supported in the care facility and never worry about difficult decisions again. I didn’t even feel like seeing my husband, as Carol feels too inadequate for marriage.

Ultimately, the situation got sorted (hopefully). My husband sent out an E-mail to the tax agency asking them to either process my payment with the wrong number or return it to me so I can submit it again. Still, this whole situation has us (as in, me with all my parts) truly triggered. It’s a sad reality that each time, I am confronted with the disconnect between my good intellectual functioning and my poor emotional functioning.

Worrying: Will I Be Kicked Out of the Care Facility?

Posted on by Astrid

I have had a lot of dreams in which I was kicked out of the care facility lately. They’re no fun. I don’t know why I have these dreams. I mean, yes, a new client may come to my home, but I didn’t find out about that until today. Besides, my staff say it doesn’t mean I’ll have to leave. After all, there’s still an available room in my home.

Still, it scares me. I worry that, if this other client needs a lot of support, I will not get my needs met. I mean, not because of this other client, but because staff will be busier. Oh my, this sounds incredibly attention-seeking. I don’t want to need more support than I can get.

And what if this other client is very noisy? He’ll most likely be assigned to the other communal room than the one I’m assigned to. However, I think he’ll attend my group at day activities, which is already very crowded and noisy as it is. I was told they had many more clients before I came, but well, then this place wouldn’t have been suitable to me.

I talked about my worries to my former support coordinator on the phone. She told me these are just my thoughts and there’s no reason I’ll have to leave because of this other client. Then again, I didn’t get to elaborate on my worries.

I don’t want to be seen as needing too much. I was often seen as needing too much. Either needing too much or claiming to need more than I got. The two are different. The people at the first day activities I attended with this agency, truly thought I needed one-on-one support most of the time, which isn’t even what I was asking for. The staff on my last psychiatric unit thought I needed little care but was just demanding a lot out of some feeling of inadequacy that was apparently unfounded. Either way, I was asked to leave the place. With the psych ward, things were a little nastier than with the day center, but the result was the same.

I saw the behavior specialist who worked for that first day center today. That fueled my worries even more. I mean, she was extremely supportive, but didn’t really know how to handle my issues either. Then again, she never got to talk to me beyond the one time when she made sure I got transferred from the industrial activities group to the sensory group. That was a good move, but when it didn’t fully work out, I guess the manager stepped in and said he’d been accommodating enough and I would have to leave. That’s what I think will happen here too. I mean, my staff are very accommodating, but what if it isn’t enough? Will we find other solutions? Will I get even more accommodations? Or will I at some point just be kicked out? I’m very unsure and that worries me.

January Health and Wellness Update

Posted on by Astrid

So it’s already been over six weeks since I posted that this time finally I was serious about my weight loss and healthier living journey. I still didn’t post an update. Now is the time for one. I’ll also include a general health and wellbeing update.

I didn’t get weighed in over the holidays. Even though I took some care not to overeat, I didn’t stick to a healthy routine either. In fact, on Christmas Eve, my staff ordered Chinese and I had three servings. That clearly was a bit too much, as I had a tommy ache afterwards. Over the rest of the holiday season, I did okay’ish.

I still use my water reminder app and make sure I drink plenty of water nearly everyday. Sometimes I forget to log it, but I can be assured that I drank enough at least. When at my husband’s, it’s still a bit hard.

In January, I’ve been eating healthily most days. I eat plenty of vegetables and particularly fruit, taking care not to go for the sugary ones like bananas too much. My day activities orders grapes regularly, which the other clients can’t eat due to choking risk. I can, so I usually have them all over the course of a week.

Then of course I got sick. I didn’t eat very well for a few days two weeks ago, so that could have led to weight loss too. Then again, I did eat dinner each day. As soon as I felt a bit healthier, I started eating a good breakfast and lunch again. Lunch is still a struggle, as I’m not a fan of bread, so I often skip that. This means I only eat fruit. I don’t eat bread for breakfast usually either, but I do make sure to add muesli to my yoghurt.

I musst say I still indulge into snacks at times, but I try to limit them, so that I’m not eating all day. After all, having high blood sugar all the time contributes to type 2 diabetes.

Exercise-wise, I do pretty well. I go for a long’ish walk four to five times a week. Over the past while, I’ve managed at least 150 active minutes most weeks. I didn’t when I had the flu, of course. Still, it’s extremely hard to get to my step goal or even close. When I go for one half-hour walk a day, I usually get about 4000 steps.

So did this pay off or do I need to work harder? Regardless, I need to work harder, as healthy eating is more important than weight loss itself. Given that I only managed to do okay in the healthy living department, I was surprised to see the result on the scale last Friday. I had gone down 2.8kg or 6lbs since early December. Of course, my sickness may’ve contributed. I hope I’m not down too much when I get weighed in again at the beginning of February. I mean, that would fuel my hypochondria. I hope for a maintain or small loss. Only two more pounds and I’ll no longer be obese.

In other respects of health, I did okay too. Like I said last week, my sleep is a little messed up, in that I get a lot of vivid dreams and nightmares. For this reason, I try to do a mindfulness practice or at least listen to soothing music before going to bed now. This seems to have helped some so far.

#WeekendCoffeeShare (January 19, 2020)

Posted on by Astrid

Hi and welcome to another installment of #WeekendCoffeeShare. I can have coffee again, as my flu is gone. It was gone already at the end of last week, but for some time, I still didn’t really enjoy coffee.

I also tried Optimel, which is a type of no-fat yoghurt drink, today. I initially thought it was based off buttermilk, the idea of which has me so disgusted that I don’t even want to try it. It is based off no-fat yoghurt though and it was good. If you want to try it too, I think we have some in the fridge.

If we were having coffee, Optimel or another drink, I’d share that this week has been eventful. I already wrote about it a lot during the week, as I seem to have gotten quite a bit of writing mojo back. That’s good! I also enjoy the comments on my blog and am trying to engage with you lovely readers more. I also love reading and commenting on other blogs and seeing people respond to my comments.

If we were having coffee, I’d share that the week-end was good overall. I had some nightmares again, but was able to keep them from interfering with my day for the most part. Still, I’m considering raising the issue of my vivid, bad dreams with my mental health treatment team.

If we were having coffee, I’d share that my husband didn’t have time to collect all my soaping supplies yet, but we’re probably going to sort through them another time together. I think I may order some supplies online this coming week, but am not sure. My husband and I agreed on throwing out all the ingredients, as they’ve probably gone past their expiration date and aren’t too expensive. At least not if I only buy what I need and don’t end up ordering random stuff in large quantities.

If we were having coffee, I’d share that we succeeded at getting my photo taken at the photographer’s yesterday. This is for my public transportation pass. There are really strict rules on photos for IDs and passports, but mine isn’t due for renewal for another five years. I want the transportation pass so that I can travel to my husband by train. You can get an anonymous one too, but then you can’t load discount subscriptions or the like onto it. Now I will still need to digitally apply for the pass.

If we were having coffee, I would share that my husband and I ate out at La Place, a restaurant chain we often have lunch at, yesterday evening. It was okay, but rather expensive for the quantity and quality of the food. Lunch usually is much better.

If we were having coffee, I’d be sharing that I was an overachiever according to my Fitbit yesterday. It probably says so if I get over 12,500 steps a day. I got 12,700. Today I made up for it, as I sat on my ass almost all day.