#WeekendCoffeeShare (November 15, 2020)

Hi everyone! How are you doing? Today I’m joining in with #WeekendCoffeeShare. I just had my afternoon coffee, but there’s still plenty left for you all. We also have various flavors of tea and there’s cold water in the fridge I think. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was a rather rough one. I am already feeling slightly better now though. I’m still struggling to keep busy when I’m alone, but it’s okay.

If we were having coffee, I would tell you that the weather is pretty mild for november. It’s raining some of the time, but it’s also sunny some of the time and it’s pretty warm for this time of the year, roughly 15°C.

If we were having coffee, I would be proud to tell you that I got in over 65K steps this week so far. That’s a record! I’m probably still going for another walk this evening, so I may break my active heartrate zone minutes record of last week according to my Fitbit too.

If we were having coffee, I would tell you that I’m so immensely grateful for the extra supports my staff put in place for me. Like I mentioned earlier in the week, I was extremely depressed earlier and was seeing no way I could manage at this care home or in this world as a whole for that matter. Thankfully, I got some one-on-one support in the evenings, which are the hardest for me.

I did feel some pressure when a staff said she hoped that in a few weeks, I would not need as much support. This caused me some considerable anxiety, as I worried I’d be kicked out of this home if I didn’t improve in a few weeks. The staff didn’t mean it that way though.

If we were having coffee, lastly I would tell you that my husband came by yesterday. We drove for a bit and then went for a short nature walk. My husband had also brought me some apple pie his father had baked for his birthday. I did struggle to eat it properly whilst in the car, which I felt intense shame about. My husband was okay with it though.

Things Can Only Go Up

Like I mentioned earlier in the week, on Sunday I was in a major crisis. On Monday, the manager came to reassure me that I wouldn’t be kicked out of the care facility. I wasn’t convinced though and got stuck on a comment that seemed to invalidate my need for more support.

On Tuesday and Wednesday, I cried my eyes out. I felt that there’s no place where I truly belong. It didn’t help that my husband said I experience a lot of internal stress so wherever I go, I’ll take that with me. I’m pretty sure he meant it in a more positive way than I took it. However, I took it to mean I’m too wicked and needy and stressed for this world.

On Tuesday, I started envisioning a place I belong and don’t feel pain. Until that point, I had always assumed there must be a better place for me out there within this world. This had led me to check the care agency’s profiles for other homes pretty much on a daily basis. As of last Tuesday though, this “better place” became more like the afterlife. It wasn’t that I wanted to die, but I wanted the intense pain to end.

On Wednesday, I cried for what seemed like forever. I was crying alone in my room and at one point had the sense of clarity to press the call button. There is this extra staff who normally helps out between 6PM and 8PM. She came into my room and said she’d stay with me for the entire two hours. I cried and talked and let all my feelings out.

At one point, this staff asked whether I’d heard of one-on-one support. I had, but asked her to clarify it anyway. She asked me whether that sounded like something I might benefit from. I finally overcame my intense shame and said “Yes”.

Yesterday, I started the day off pretty sad and had some crying fits throughout the day. At about 4:30PM, a staff came to soothe me and said that that evening, I could sign something to get me more help. I wasn’t sure what she meant. Turned out she meant a letter to the manager requesting more support for me.

My assigned staff wrote the letter, with my input, that evening and I signed it. Now of course we still need to wait for the manager’s response. She may also need to request extra funding for me from the authorities. Even though I’ve known about one-on-one support for almost as long as I’ve been at this facility and have secretly wished I could get it many times, I don’t know that much about the technicalities. That’s not my responsibility though.

From now on, I believe the only possible way is up. Even if I don’t get the one-on-one support I need, the staff have a clearer understanding of my needs and will be able to help me more adequately. Also, with my signing of the letter, I sort of also signed for my wish to stay at the current home. I originally intended on breaking my habit of looking for another place today, but still checked. I wasn’t as affected by what I saw though.

If I Have a Good Day…: Ramblings on Fear of Joy

Today is a slightly better day than yesterday. I actually managed to make a soap for a staff and also go on walks. I even reached my daily step goal! In addition, I have been exploring my faith.

Still, fear of joy is haunting me. Until a few years ago, I never knew it was a thing. That is, I had read about it on a fellow trauma survivor’s website. That was many years ago already, but I never quite understood what it meant. I never realized I experience it. And yet I do.

I think this fear is intertwined with my core belief that, if people truly knew me, they’d abandon me. It is the exact opposite, in a way, and yet it’s similar too. I mean, if people abandon me regardless, why bother trying my best?

Deep down, I feel that people are going to abandon me if they find out how wicked I am. I also, conversely, feel that people are going to abandon me if they think I can cope fine on my own. And these different views are not mutually exclusive. After all, my psychologist at the mental hospital thought I was bad and manipulative, and yet she also thought I would cope fine on my own.

My belief that people don’t see the real me, the wicked, attention-seeking, manipulative me, makes me want to disappear. It makes me feel ashamed of my needs. But it also causes intense anger, because at the core maybe I want to prove myself right.

On the other hand, my belief that people don’t see my genuine need and think I can cope fine on my own, leads to actual care-seeking behavior. It’s not the same as attention-seeking, but maybe in my current context of a care facility, it’s worse.

I have a sense that both of these beliefs cause me to fear joy. On Sunday, I felt abandoned by the staff. Then on Monday, I was trying to “prove” that I’m more needy and hence more wicked than my staff believe. Today though, I’m feeling slightly better, but this scares me. It scares me because I’m convinced I’ll be expected to cope on my own if I’m managing.

Maybe that psychologist was right after all that I have dependency issues. I worry the staff will agree at some point and this in fact reinforces care-seeking behaviors. Which, of course, is counterproductive.

A Time I Decided to Speak Up for Myself

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

Thankful Thursday (July 23, 2020): My Care Team

Hi everyone! How are you all doing on this warm Thursday evening? I’m doing a lot better than I was earlier this week. I could actually do an early gratitude list, as there’s more than one thing I’m grateful for. A simple list wouldn’t do justice to how huge these gratefuls are though. Let me share. I’m joining in with Thankful Thursday.

First, I still need to update you all on my appt with my nurse practitioner and CPN on Tuesday. It went better than I expected. The outcome is that my nurse practitioner is going to talk to the psychiatrist and see if he can find us a psychologist to do trauma therapy and work on our emotion regulation issues. I don’t remember all the details of the meeting, but at one point, I/someone in me blurted out that we’re in Facebook groups for dissociative disorders. I quickly added that really that’s none of my nurse practitioner’s business, but still we feel a lot of shame surrounding this.

Then on Tuesday evening, a discussion erupted on Twitter about the ISST-D’s guidelines for diagnosing and treating people with dissociative disorders. There’s this article from 2001 that’s still being used to weed out alleged fakers. It uses such things as being open about your DID or trauma to people other than a few close confidants, showing no obvious shame when talking about your trauma, being in support groups for DID, etc., as apparent proof that you’re fake. Now I must say I’m still conflicted about going the actual trauma/DID assessment route, but this did trigger us. However, my support staff are on my side.

We were still recovering from the shame about all this when we heard the main good news I was planning to share here. I got a higher care profile allocated to me by the long-term care funding authority. I still can’t quite believe it, but I’m so happy. The application hadn’t gone out till last week, but this afternoon, my staff got a call that it’d been approved. I’m still waiting on the letter in my government inbox confirming it, but this is really good news. I now have the highest care profile for blind people in the long-term care system.

I was feeling a bit disconnected when I heard the news. Like I said, I still can’t quite believe it, but it’s such amazing news. I’m so glad my staff were so perseverant that they actually applied for this.

Looking forward to hearing what you all are grateful for today.