Decisions

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.

Gratitude List (June 20, 2020) #TToT

Hi everyone! How are you all doing? I’m a bit tired, but not ready to go to bed yet. Instead, I’m going to write a gratitude list again. As always, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. Sunshine. The weather was really good over the past week. We had some light rain some days, but most days were sunny and warm.

2. An anti-allergy medication. I have bad eczema that itched like hell for some weeks. I finally went to the doctor on Wednesday and got an antihistamine called desloratadine. It didn’t help at all the first few days, or maybe without the medication the itch would’ve been even worse. In any case, now it does seem to help.

3. An antibiotic ointment. One spot, which the doctor initially thought was the result of an insect sting, got inflamed. Thankfully, with some Fucidin applied topically, the inflammation is a lot less now.

4. The night staff. A few nights ago, the itch was so bad and the inflamed spot so painful that I got really scared. I called for the night staff to apply some oily cream to the eczema. She did this, but I remained very scared. Somehow, I had gotten it in my head that I’d get sepsis from this. I pressed the call button again at around 2:30AM. The night staff was so kind and reassuring.

5. Alternatives to bread. I don’t really care for bread for lunch, at least not when topped with the ordinary kind of things you normally put on bread, such as cheese, peanut butter, etc. Thankfully, we had some lettuce left over from making burritos last week, so I had a salad for lunch one day. Another day, I had noodles.

6. Pancakes. Today, two staff came to our home on a voluntary basis just to bake us pancakes. They were so delicious!

7. Reaching my step goal. I reached over 12K steps (my goal being 10K) on three days this week. Today, I didn’t do so well, so I will still need to get some 5K steps tomorrow to break my weekly record of just under 65K steps.

8. The visiting rules at my care facility likely being relaxed as of next week Friday. The announcement will go onto the facility’s COVID-19 page on Monday.

9. My parents offering to visit me. I called my Mom last Sunday and, as we were discussing the visiting rules, my father asked if they could come too. I initially was a bit hesitant and I’m very nervous, but also excited. They will be visiting me next Friday.

Oh, and now I can’t think of a number 10, but whatever. I’m grateful for being able to express my gratitude. Consider that my tenth thankful. Besides, the number is just a suggestion.

What are you grateful for?

Lovin’ Lately (June 19, 2020)

Hi everyone and welcome to another edition of Lovin’ Lately, in which I share all the things I’ve been loving recently. I’m joining in with Friday Favorites.

Today was a pretty busy day. It was the Friday we have day activities (every other Friday is a day off). As such, I’ve been pretty active. This is why I didn’t sit down to write until now that it’s past 10PM. With no further ado, let me start.

1. Netflix. Last Saturday, in an impulse, I decided to get a Netflix subscription again. I always get the basic one, as I, being blind, don’t need HD video or multiple screens to watch on. I wanted to see the Netflix original documentary series Diagnosis. This is really fascinating!

2. My yoga mat. My husband brought it to me last week and I finally unfolded it this evening to get some working out done. I tried several yoga apps, but haven’t found one that I like yet. Then again, I love doing yoga just the way I like it. I mean, I’m pretty inflexible and don’t have much strength in my muscles at all, but if I don’t practise, it will remain this way. I tried a beginner’s yoga class with the app Down Dog, but couldn’t follow it without being able to see the video. Still, I loved the feel of working out.

3. Journaling prompt collections. I’ve probably mentioned half a dozen times already that I love to collect books of writing prompts, particularly those geared towards journaling. This week, I got a few good ones. The Goddess Journaling Workbook by Beatrix Minerva Linden is great. I already worked on some of the prompts over the past few days, as you can see. I however also love The Year of You by Hannah Braime.

4. A stuffed pillow. I got to borrow one from another client here at the care facility earlier this week and was totally in love with it. I kept stroking its soft side as I dozed off to sleep.

5. My Fitbit. This is by no means a new product, but I just want to mention it as a way to celebrate the huge step achievement I reached this week. So far this week, I got over 56K steps. This includes a short elliptical workout this evening. My Fitbit doesn’t count the yoga workout.

What products have you been lovin’ lately?

It’s Been Three Months

Today, it’s been three months since the day center closed due to the COVID-19 lockdown. A few days earlier, we’d already been advised not to get visitors at the care facility, but the no-visiting rule didn’t take effect till March 25. Over at Mama’s Losin’ It, Kat asks us in one of her writing prompts this week how we’re doing three months into lockdown.

Of course, the restrictions are slowly being lifted. As of May 21, we’re allowed two visitors, ideally from the same household. They still need to maintain distancing, can’t have physical contact with us and can’t enter the care homes.

I found out yesterday that more restrictions may be lifted as of June 26. I already arranged for my parents to come visit me on the 26th, as my staff said this was okay even though my mother-in-law will be visiting me on the 25th and my husband on the 27th. I guess they’re being less strict as it’s my birthday on the 27th.

The new rules, if they take effect on the 26th, would allow limited outside activities, such as visits with family. Then again, a lot is still uncertain and is left up to the specific homes’ staff and management. Regardless, the day center won’t fully reopen till October.

I’m doing pretty well amidst the lessening restrictions. I mean, I’m really excited but also a bit anxious about possibly being allowed to go home to Lobith again. It’d be cool if I could have a real birthday celebration even if it isn’t right on the 27th.

With respecct to the day center, I’m happy it won’t reopen fully till October. I feel a lot more comfortable getting day activities in my own home, where I can retreat into my room. I also think I get more support now. I really hope a way will be found for me to retain a similar level of support once we return to the day center.

It’s interesting that, with quarantine having lasted for three months and still a lot of restrictions remaining, I hardly ever think of COVID-19 or the lockdown. Last week, another writing prompt I came across was about quarantine and I couldn’t think of what to write for it. Several people I know were tested for coronavirus recently, but I readily assumed they would be negative (and they were).

Other than that, we don’t shake hands and keep our distance whenever possible. That will likely continue for a long time still. generally though, I’m going with the flow, as they say.

Of course, I’m happy I can see my husband and family again. I’m also still very happy that this thing didn’t happen last year, because then I’d have to stay at home alone for so many months. Remember, the day center won’t reopen till October. Now this feels comforting. Last year, this definitely wouldn’t have been the case.

Mama’s Losin’ It

Listening to My Inner Voice(s)

The day two prompt in The Goddess Journaling Workbook is about listening to your inner voice. This is incredibly hard. Not just because I have multiple inner voices, but because a lot of them carry shame.

Today I found out Onno van der Hart, one of the world-s top experts on dissociation, had his psychotherapy license revoked indefinitely for violating a patient’s boundaries. He was the main proponent of the structural dissociation theory. This theory is controversial in its own right, as it dehumanizes alters. For example, therapists are supposed to only talk to the host or apparently normal part, who is then supposed to relay messages from the other alters or emotional parts. One of the main problems with this is shame. The host often feels uncomfortable sharing the other alters’ thoughts because they are painful.

So, as an act of radical rebellion, I am going to now let each alter who’s willing to speak on this issue share their thoughts.

I knew this. DID is bullshit. It’s not real, at least in my case. I’m so happy I am not diagnosed, as this Onno van der Hart, a so-called expert, took twenty years therapying with a client only to make her dependent and then dump her like a pile of poo.

I’m scared. I wish I still had the diagnosis so I could get trauma therapy. I want my therapist to comfort me. I don’t want to integrate, but I do want to process stuff. I’m not sure. I’m scared that no-one will believe me now that the Netherlands’ top expert on DID lost his license.

I don’t want no fucking therapy. I don’t want to be forced to be anything I’m not. I just want to be me and be myself and be accepted.

Fuck. I’m manipulative. The whole trauma thing is made up.

Well, I realize I’m not really even capable of letting each of us share their honest thoughts. I still find that I was going to redact out the four-letter words. I feel tons of shame surrounding this whole controversy and the DID thing as well.

As a side note, Onno van der Hart wasn’t sued for his theory of structural dissociation. I think it will continue to guide psychotherapists and the multidisciplinary guideline for treating DID. Van der Hart lost his license for boundary-violation, including unloading his own personal problems onto the patient, sending her unsolicited, emotionally laden E-mails, etc. My husband said he was just trying to cash on her and if no-one saw it, something’s wrong with psychotherapists in general. I’m not sure how I feel about that.

I Am My Top Priority?

Today I decided to buy The Goddess Journaling Workbook by Beatrix Minevera Linden. This book of journaling prompts focuses on the Greek goddesses to explore yourself and keep a manifestation mindset all through the year. The first goddess to be explored is Persephone. She was led into the Underworld by Hades and ate a pomegranate there. This fruit was the fruit of the dead, so Hades could really keep her in the Underworld forever. Eventually, Hades and Persephone’s mother Demeter reached an agreement to keep Persephone in the Underworld half the year and in the upper realm the rest of the year.

Persephone’s story is used as a metaphor for our darker side and our mistakes that follow us throughout life (like Persephone’s eating the pomegranate did). The first prompt in Persephone’s chapter is titled “You are your top priority”. It asks us when we didn’t put ourself first.

Well, my first thought is: am I really supposed to be my own top priority? My husband often says he values me more than himself. I tend to reply that I value him more than myself too. Whenever I doubt that I value him more than myself, I feel guilty. But really, I currently choose myself over my husband whether that’s supposed to be so or not.

It wasn’t always this way. Until I made the decision to try to go into supported housing on September 20, 2018, I always put others first. Not just my husband, but literally almost everyone seemed more important than me.

I was diagnosed with dependent personality disorder in 2016. Though the diagnosis was made for all the wrong reasons, there is some truth to it. I remember my psychologist used my lack of resistance to her opinions against me and she was right. Until I decided to ask for a second opinion in November of that year, I never openly fought her list of ongoing misdiagnoses and mistreatments. It’s interesting that, later, she said I am very assertive but maintained that I have DPD nonetheless.

What also comes to mind, is that as a child and even as a teen, I always did what others wanted and put them before myself. I remember at one point using the Persephone myth to describe how I felt about my relationship to my classmates in high school. (Remember, I went to grammar school, so the classics were taught a lot.)

Still, I was thought of as self-centered or selfish even by my parents. This is probably because, in a materialistic way, I did put myself first. I was often jealous when my sister got gifts. Indeed, she did get more than I did, but I got more attention, albeit most negative.

Now I do generally put myyself first. I decided to go into long-term care despite no doubt disappointing my husband a bit. I mean, of course I struggled greatly living semi-independently, but it wasn’t like I was dying. Or maybe sometimes it was, because I did take two overdoses that could’ve killed me. Then again, wasn’t I selfish for doing this?

Linking up with Life This Week.

#WeekendCoffeeShare (June 14, 2020)

Happy Sunday afternoon everyone! I’m joining in with #WeekendCoffeeShare. I think I just ate all of the cheesecake that one of my staff brought for her birthday yesterday and I think the other residents ate all the cream cake she’d brought too. I guess we still have lots of cookies though. Have a cup of coffee and a cookie and let’s catch up.

If we were having coffee, I would rave once more about the smoothie maker a staff brought me on Monday! I have been making smoothies almost everyday since. Yesterday, I made one with frozen blueberries in it for my husband. Its color was a bit grey or so my husband said, but it tasted good. Unfortunately, the staff left the blueberries in the fridge rather than the freezer, so we had to use them all up today.

If we were having coffee, I would tell you how much fun I’ve had with this staff member. She’s returning from long-time sick leave, so is slowly building up her hours again. This means sometimes she just comes as an extra staff to do fun things with us. Like, on Friday, she helped another resident and me make cards for a staff who just earned her carer diploma. We also played a game using a mallet and nails, in which you have to slam wooden blocks into a piece of cork. Normally the wooden figures are really relatively thin, so I don’t have the coordination to do it properly, but these were actually thick blocks.

If we were having coffee, I would tell you that I had a nice phone conversation with my former support coordinator. She was really nice. Like I said on Friday, I’d half assumed she no longer knew who I was, but she definitely still remembered.

Like I said on Friday, she told me my staff have been thinking of applying for more care for me. This did make me feel a little scared, as last year the application for long-term care was really hard.

Yesterday, I reread the application and indeed, some things are more severe now than my staff thought they were back then. This has me feeling all sorts of things. Isn’t care supposed to help me be more independent? Well, the goal for me is stabilization, not development, but yeah. My inner critic is shouting at me, but I try to shut her up.

If we were having coffee, I would tell you that I’ve been experimenting with my new phone’s camera. I’ve been taking random pictures of my room. I haven’t had a staff check them yet, so not sure they’ll ever go on my blog, but oh well.

If we were having coffee, lastly I’d tell you that I got a Netflix subscription again yesterday. I’ll just try it for a bit and then may unsubscribe again, but I wanted to see the Netflix original Diagnosis. This, like the book by that title I’m currently reading, is based on Lisa Sanders’s New York Times Magazine column on hard-to-diagnose medical conditions. It’s very interesting.

What have you been up to lately?

Gratitude List (June 12, 2020) #TToT

It’s Friday again. I’m still feeling pretty off. I have a lot on my mind, but rather than dwelling on it, I’m going to write a gratitude list. I’m joining in with Ten Things of Thankful (#TToT) again.

1. Bookshare. This is a service that provides accessible eBooks to people with print disabilities. It costs $50 per year and my husband just renewed my subscription. I love it! Not all books are available internationally, but enough are that I enjoy the service.

2. Smoothies. A staff gave me a smoothie maker on Monday. I already had a blender, but this one is a bit smaller and comes with its own screw-on drinking bottles. I have been loving making my own smoothies! Particularly, I loved one with apple, cinnamon, almond milk and oatmeal.

3. Tacos. Or Tortillas or whatever these particular ones are called. We made those at day activities yesterday. We filled them with lettuce, chicken and pesto. My husband commented that pesto isn’t supposed to go on a wrap, but whatever.

4. Crafting a bit. The same staff who brought the smoothie maker, came again today and did some crafting with me and another client. We made some type of cards for a staff who earned her carer diploma recently.

5. Lots of steps again. I reached 10K steps each day this week except for today.

6. My former support coordinator. I texted her yesterday, half assuming she had deleted my contact info and wasn’t sure who I was anymore. Not so though. She offered to call me and we spoke for a bit.

7. My current staff. They are absolutely taking my care needs seriously. One thing I found out through my former support coordinator is that they’re considering applying for a higher care profile for me. This has me feel all sorts of things that I can’t describe on my blog in case someone from the funding authorities reads it. Particularly, I was scared this would mean a whole new long-term care assessmment, which would mean a risk of losing my care. My support staff did reassure me though.

8. My community psychiatric nurse. I tried to call her through the mental health agency’s secretary this afternoon, but the secretary had their automated lunch-break message on long past 1PM. I E-mailed my CPN and thankfully she got from my message that I wanted a call despite my not actually having asked her for one. She helped me process some of my feelings.

This is it for now. What are you grateful for?

Five Things I Do For Fun

Good evening all! I’m having tons of thoughts and feelings right now, but they’re not to be shared on the blog as of yet. Instead, I am joining Mama Kat and sharing five things I do for fun. Maybe listing things I enjoy doing will distract me.

1. Reading. I used to hate reading as a child. As a teen, I developed an interest in Caja Cazemier’s young adult fiction, but none of it was suited for school beyond the eighth grade. I hated all the classics we had to read in school.

Then when I started university as a linguistics major, I was sent a book we were supposed to read before classes started. It was probably sent out to all humanities majors, as at least in our classes, it was never mentioned.

I’m not in college or school now though and can do what I want. So I read. I started with non-fiction and memoirs, but now I read fiction too.

2. Cooking. That is, simple food prep. I got a smoothie maker from one of the staff last Monday and have been loving making my own smoothies. I also love to make salads and other relatively simple lunches. I need some help with it, but the smoothie I made yesterday, I did almost entirely independently.

3. Crafting. Particularly soap and bath and body product making. I haven’t gotten down to that much lately, but I love it.

I also love trying out other crafts, though I usually need considerable help with those. I have tried many crafts in the past and still would love to try some again.

4. Researching my most recent special interests. Right now, they are smoothie recipes, so I combine this with #2 above. I can totally get a mood booster from reading up online on some topic that interests me.

5. Blogging. Yes, I still blog for fun! I sometimes get caught up in negativity if my stats are down, but most of the time, I truly blog for the fun of it.

What do you enjoy doing for fun?

Mama’s Losin’ It

Reading Wrap-Up (June 10, 2020)

Good evening everyone! I’m in quite a good mood for reading lately, so I thought I’d share a reading wrap-up with you all today. I’m joining in with WWW Wednesday.

What I’m Currently Reading

Last week, I downloaded a couple of autism-related books off Bookshare. I started with Our Autistic Lives edited by Alex Radcliffe. This is a collection of personal accounts of life with autism, organized by author age.

Then I stumbled on Diagnosis by Lisa Sanders. This is a collection of colums by the author about strange medical cases. I’m 20% done with it now.

Lastly, today I picked up Five Feet Apart by Rachael Lippincott again after a few weeks of not reading it. I’m not sure I’ll finish it, but we’ll see. I don’t think I like this book as much as I’d originally thought.

What I Recently Finished Reading

I spent all of last week-end reading Full Disclosure by Camryn Garrett and finished it on Sunday. See my review, which I wrote on Monday.

What I Think I’ll Be Reading Next

I put a few other autism-related books on my virtual shelves this past week, including Spectrum Women by Barb Cook. I also downloaded a few more books in honor of #BlackLivesMatter, namely On the Come Up and The Hate U Give by Angie Thomas.

However, I’m a true mood reader and I’ve had Clean by Juno Dawson on my radar for a while, so I may buy that one soon and read it first.

What have you been reading lately?