Negative

This is probably going to be a quick post. Like I said on Sunday, I was interrupted while blogging by a staff to tell me I and all other clients with cold symptoms were from then on in room-based isolation. We would be tested for COVID-19 as soon as possible. Thankfully, yesterday morning, the facility’s nurse came to test us. It wasn’t pleasant, but it was okay. I am however pleased to inform you that I, as well as all other clients, tested negative for coronavirus!!!

It was no fun being in room-based isolation. The hardest part, for me, was the fact that staff had to go to each client’s room for individual support rather than combining care activities, so there was effectively less time for each of us. The staff who had come to inform me of the isolation, said I could press the call button as often as needed. Well, press the call button I could, but that didn’t guarantee a staff would have time to come.

Yesterday, I landed in a rather bad crisis. Initially, I had been really upset and crying and screaming. Then one staff came to inform me that she wasn’t wearing protective clothes and the staff who was, would come “in a while”. That’s a rather unclear comment to make to an autistic person. I freaked out and became destructive.

For those asking why that staff wasn’t wearing protective clothes, staff need to change into different protective clothing when visiting each person suspected of coronavirus separately. They also need to leave the protective clothing at the client’s doorstep. After all, suppose my snot gets onto the staff’s protective clothing and they then go help someone who isn’t showing symptoms. Then that person runs extra risk of contracting COVID-19. You see, over half of the clients did not show symptoms.

Thankfully, the staff in protective clothing came about ten minutes later. She was able to comfort me a little.

Today at around 2:15PM, I heard the day activities staff tell another symptomatic client that he was free to leave his room. I thought I heard her say that “all is well again” or something like that, but I didn’t dare hope I was negative too. Well, I was! The first thing the staff asked when telling me everyone had tested negative, was whether I wanted to go for a walk. Of course I did.

We also had French fries at the facility’s cost to celebrate the good outcome. I was almost writing “positive”. It’s a positive outcome indeed that everyone was negative!

Currently (August 2020)

It’s been forever since I last took part in Currently. That’s partly because the day coincides with the Insecure Writer’s Support Group posting day and partly because I cannot always think of much to say to the prompts. Today though, I’m feeling like writing and the prompts appealed to me.

Choosing

To take an Ativan to avert yet another crisis. Well, not quite avert, as it was already happening. I’m safe and relatively calm now that the Ativan has had about an hour to kick in.

Consuming

Banana chips and grated coconut. I bought a bag of both at a wellness store yesterday. Consumed all the banana chips in one sitting and put some of the coconut in my smoothie. Today, I actually ate some of the coconut as is.

Enjoying

Reading, of course. I spend a lot of the time with my face in a book, figuratively speaking, as I use my Braille display to read books on.

Add to my reading experience some calming music, for example a Robbins Island Music Group album, and some essential oil. I bought two essential oil blends at the wellness store yesterday and particularly love the one called Joy. The other one was called something like Sleep Well, so I may be able to use that tonight.

Ordering

Not anything right now, but the shoes I ordered last Monday, did arrive today. They’re brown with pink walking boots and I love them. I tried to explain to my husband what I’d ordered and he kept coming up with walking boots that cost like €200. Makes me feel I got quite a bargain, as mine cost €80. Of course, that’s still a lot of money.

Remembering

That no-one promised me a rose garden. I need to remind myself of this, because I seem to be dealing with a lot of fear of joy lately, as well as having a big case of “the grass is always greener on the other side” with respect to living situations. Maybe I just need to accept that the care facility I live in now isn’t perfect, but it’s as good as it’s going to get. This issue may be one reason I spiraled into crisis today.

How have you been?

Yet Another Night-Time Crisis

Honestly, I don’t know why I want to share this. It’s late Monday evening here and I’m feeling okay’ish. Tomorrow, I’ll have another meeting with my CPN and nurse practitioner to discuss my treatment. This got us worrying a lot last night, so much so that we ended up in crisis.

As I probably said a few weeks ago, my nurse practitioner wants me to try acceptance and commitment therapy. This wasn’t what we’d expected at all and honestly I still don’t understand how he thinks it’s a good fit for my issues. I mean, it’s evidence-based for depression, anxiety and OCD, none of which we deal with to a significant degree.

He was also pretty dismissive of my trauma-related symptoms. Obviously he doesn’t believe we’re plural. Fine by me, though not by some of the others. But somehhow he seemed not to believe I suffer with any type of trauma-related condition at all. At least, he didn’t feel that trauma treatment could or should help us.

This got us worrying last night, as we really have no idea how to advocate for ourself without coming across like a malingerer. It got so bad that we ended up impulsively leaving our room.

After our last case of elopement, the staff decided to lock the door to our home, so I couldn’t go outside. The night staff though hadn’t come to my room to check on me yet. It was 11:10PM. The night shift normally starts at 10:30. Eventually, a substitute night staff came by, saying he had to do one-on-one with another client, that the real night staff was delayed and he was really busy so could I please go back to my room? That upset us greatly, so even though we went back to our room as requested, some of us started self-harming.

About twenty minutes later, the real night staff came to check on us. We were upset, so told her to leave. She left and we cried and self-harmed some more because we were still very upset. Our signaling plan says staff are to stay with us if we’re upset even if we tell them to leave, but I don’t know whether the night staff have access to this plan.

Finally, we left our room again and waited, still panicked, for the night staff to be alerted and to come check on us. She was distraught at seeing us so upset. It makes me feel shame and guilt for making her feel this way. She got us a PRN lorazepam, which calmed us slightly. Still, we didn’t sleep till 2AM.

Now I’m feeling okay again, but I’m still not sure what to do with tomorrow’s appt. I mean, after each crisis, my mental health team say I somehow managed to get out of it. They probably mean it as a compliment, but it doesn’t feel that way. Today, I didn’t even care to call the mental health team. I’m still shifting between wanting to give up mental health treatment altogether and demanding trauma therapy. After all, the reason the appt upset me so much is that it triggered my feelings of being unseen, unheard, unsupported. Then again, maybe we’re not worth being seen, heard or supported.

I Think We Found a Relatively New Alter

So last Friday we for whatever reason landed in a bit of a crisis. Our husband would be visiting us on Saturday and for some reason, we convinced ourselves he was coming to say he wanted to break up with us. Like I said yesterday, it turned out he wasn’t. He’s such a great hubby!

The night staff checked on us at around 10:45PM. This had been agreed on after our crisis last week, because we were scared to press the call button at night. We told the night staff that we were anxious. She tried to tell us to try to get some sleep. Obviously that didn’t work out.

After we’d been going on the computer for a bit, we decided to E-mail our husband. Then, for some reason, we eloped and wandered around outside of the care facility for a bit. We after about half an hour tried to find our way back, but the doors to our home and to all other homes were locked. We started to scream out for help and finally, the sleepover staff heard us. She and the night staff came to our rescue. Of course, we were asked why we hadn’t pressed the call button. So far, I have no idea.

Then yesterday evening, we were watching a video on the Dutch Center for Consultation and Expertise website. It was about a young woman with severe attachment disorder. In the midst of it, our staff came into our room for something, I can’t remember what. We got really agitated and that’s when I realized this might be a relatively new alter. The girl in the video was called Deborah, so that’s the name this new one chose.

What is so unique about her, is her tendency to “test” the staff’s willingness to help us. Some of us, and this may include her, get triggered when we perceive we’re getting less help than we think we need. Some of us express this appropriately, but Deborah doesn’t. She, rather, gets really agitated and self-destructive. Unlike the Deborah in the video, she hasn’t been aggressive towards others as of yet, though inside she definitely feels like it.

We discussed Deborah’s needs with our assigned support worker just yet. She tried to reassure us that we don’t need to leave the care home. Deborah is lucky that she had me (Clarissa) nearby to explain.

Our staff will have a meeting with the behavior specialist and physician tomorrow to discuss our care. We may get a door sensor, which alerts the night staff when we leave our room. After last week’s crisis, we also gave some of the things we were thinking of using as self-harm tools to the staff. This should hopefully be enough, though Deborah’s behavior is in some ways getting worse. We hope it doesn’t get so bad that we need more support than our home can provide.

Clarissa

Dancing Through Darkness #WotW

Okay, I’m supposed to be in bed already, but I can’t sleep. What better thing there is to do than write a blog post, right? I’m joining in with Anne’s Word of the Week for the first time in forever. The idea is to sum up your week in a word or phrase.

This week wasn’t the best mental health-wise. Yesterday, I landed in a full-on crisis. I didn’t express my dark thoughts right then, but I did to my staff this evening. It isn’t the first time I’ve experienced acute suicidality, but the intrusive thoughts and images I get then shock me everytime. Thankfully, I was able to calm down after taking a PRN lorazepam. I will be calling my nurse practitioner at mental health tomorrow, since my community psychiatric nurse is on vacation. I know I’m not clinically depressed (yet), but I do want my treatment team to know about my crisis.

The rest of the week I pretty much saw it coming. On Monday and Tuesday, I was still pretty much in my normal mood. Not euphoric, but not depressed either. In fact, I signed up for the Bout of Books readathon on Tuesday fully intending to spend the better part of the week reading or talking about books. I didn’t. The first day, I got through 23% of Five Feet Apart by Rachael Lippincott. I abandoned the book for the rest of the week though.

Particularly Friday, Saturday and today were hard. I did try to remain active. Like I mentioned several times already this past week, I tried to dance. Today I actually sort of succeeded. I also managed slightly more steps and active minutes as recorded by my Fitbit this week than the week before.

I have been trying to be more mindful of myself this week too. By this I mean I’ve started up meditating again. I use Insight Timer, which has like thousands of free meditations. If meditating becomes a regular habit, and I sure hope it does, I may pay for the premium plan. Honestly, though I was still close to crisis today, the affirmation in one of the meditations I’ve been listening to, helped me.

I also started exploring some ways of getting my eating and ultimately my weight under control. This is where dancing comes in handy again.

To sum it all up, I’m choosing “Dancing Through Darkness” as my phrase for the week. I feel depressed, but I’m also trying to actively do something about it.

How was your week?

Word of the Week linky

Gratitude List (May 16, 2020) #TToT

Goodnight everyone. It’s past 11PM here and I can’t sleep. I’m feeling rather hopeless. To cheer myself up, I’m joining in with Ten Things of Thankful. It feels like forever since I last did a gratitude list, even though I did one two weeks ago. Anyway, here goes.

1. Spotify playlists. I already mentioned the Cardio playlist on Thursday. Today, I discovered the Harp Music for Sleep playlist. It wasn’t created by Spotify staff, but whoever created it is awesome! I just tried falling asleep to it. That didn’t work yet, but it definitely helped me relax.

2. Lorazepam. As we speak, I’m recovering from a rather bad crisis. After an hour-long crying fit, I finally asked the staff to give me a PRN lorazepam and it helps at least a little.

3. Dancing. I mentioned this already on Thursday. Today I was in a rather low place and felt like lying in bed all day. I did manage to fit some dancing in though.

4. Pretty good food this past week. I had boiled potatoes only once and the pasta with tuna sauce I had today was truly delicious.

5. Whipped cream custard. To top it off, we had whipped cream custard for dessert today.

6. Insight Timer. Like I said earlier today, I plan on making meditation part of my daily routine. I listened to a body love meditation this evening. The instructor’s voice was a little off to me, but it was a great meditation.

7. A lovely card. Last Thursday, I got another card from the friend who lives in another home in our care facility. She had previously given me an Easter card. Now the card had written in it that she hopes to see me soon. (For context: due to COVID-19, we are currently only allowed to interact with clients and staff for our own homes.) The card was handmade and truly lovely. I will send her one (though not handmade) probably tomorrow.

8. Possibly seeing my husband soon. Currently, we are not allowed visitors at all due to COVID-19. Management though has said they’ll work out a plan on visiting next week. This may mean we need to see our visitors in an assigned room and may need to keep our distance, but anything is better than no visits at all.

This is all I can come up with right now, but it already helps. What have you been thankful for lately?

Signaling: Using Crisis Prevention Plans #AtoZChallenge

Welcome to my letter S post in the #AtoZChallenge. There are really many S words that are fitting in a self-care routine. After all, “self” starts with an S and self-care is about YOU. I will be writing about creating a crisis prevention plan.

A crisis prevention plan, which is also called a signaling plan in Dutch (hence the letter S), details the signs and symptoms you experience leading up to a crisis. In most mental hospitals, it consists of three phases:


  • Phase 1 or green: I’m doing well.

  • Phase 2 or orange: I’m not doing well.

  • Phase 3 or red: I’m in crisis.

Here in the intellectual disability care facility, a signaling plan is more extensive and can also be used to signal lowalertness. It consists of six phases:


  • Phase -2: sleeping (when not appropriate).

  • Phase -1: low alertness.

  • Phase 0: adequate and alert.

  • Phase 1: low stress, highly alert.

  • Phase 2: high stress, too highly alert.

  • Phase 3: emotional outburst or loss of control (crisis).


I find it pretty hard to translate these into English, so sorry for my quirky word choice.

In each phase, the signaling plan lists signs patients or their staff will notice when the patient is in that phase. For example, one of my phase two behaviors is loud talking. Abilities are also explained. For example, in phase 0 in my case, I am able to make decisions adequately. In phase 1, I can make choices between a few (usually two) different options. In phase 2 and 3, it’s up to the staff to make decisions for me.

Mental hospitals and mental health agencies in general are strongly focused on patient self-reliance, so they include lots of stuff about what you can do yourself in the different phases. In most cases, in fact, the patient is held fully responsible for their self-care unless they enter phase 3. I mean, patients are allowed to ask for help in phase 2, but staff will not reach out and patients are usually required to come up with direct requests for help. IN my opinion, this is rather odd.

I find it extremely comforting yet a bit surprising to see that my current signaling plan, which was created by my care staff and the behavior specialist, details staff responsibilities for each phase.

Like I said yesterday, my signaling plan also includes a recovery phase, which lists signs I’m coming out of a crisis and ways staff can help me then. This is really helpful.

Recovery Time After a Crisis #AtoZChallenge

Welcome to my letter R post in the #AtoZChallenge. There are a lot of R topics related to self-care. I want to write about recovering after you’ve been in a mentally hard space or crisis.

First, let me tell you that recovery time is important in preventing a crisis too. You just can’t go, go, go all the time. No-one can, whether you struggle with mental health issues or not. So take your down time. Whether that be a nap, a nice bath or shower, or listening to your favorite music, is up to you. Or something else entirely, of course. I often need to take a little time to unwind in the afternoon. I do this by lying on my bed with nature sounds or relaxing music playing on Spotify. When we still went to the day center, I’d go to the sensory room for about half an hour to an hour.

When you have just come out of a mental health crisis, it’s especially important to take your time to recover. Your recovery time, according to my DBT handout, may help you come to an insight as to how to prevent this crisis from happpening again. It often does for me. It may not, but then at least you’ll need time to come back to your usual self.

I have a crisis signaling plan here at the care facility. Its different phases normally range from -2 (asleep when you shouldn’t be) to +3 (emotional outburst or loss of control, ie. crisis). My staff put in another phase for me, which they call “recovery”. This is what happens after I calm down from a meltdown. I usually feel sadness and shame then. Staff are in this phase advised to stay near and help me process my thoughts and feelings. This is, for me, often the time when I can be most honest about my needs.

What do you do to recover when you’re climbing out of a mental pit?

#WeekendCoffeeShare (February 2, 2020)

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 Day I Will Never Forget

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.