Gratitude List (May 16, 2020) #TToT

Posted on by Astrid

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

Posted on by Astrid

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

Posted on by Astrid

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)

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 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.

Gratitude List (January 17, 2020) #TToT

Posted on by Astrid

It’s been forever since I last wrote a gratitude list. This past week has been truly mixed, but I still feel there’s enough I can be thankful for. I’m joining in with #TToT again.

1. Domino’s Pizza. Last week, I went home to my husband for the week-end. When we were in the car, my husband asked me what I wanted to eat for dinner. I said “Pizza” and my husband in turn asked me whether there’s a Domino’s in Zevenaar, the city closest to our home in Lobith. I said there is. However, we’d been taking an alternate route to Lobith, so my husband said we wouldn’t drive through Zevenaar, so did I mind getting pizza elsewhere? Then he started teasing me, saying stuff like “You’re still a bit sick right?” and wouldn’t it be better if we had macaroni with lots of veggies. Eventually though, he did drive to Zevenaar and we had Domino’s pizza. I loved my chicken kebab pizza!

2. The flu being gone. I feel pretty much as well as possible now.

3. Meeting the neighbors. On Sunday, our next door neighbors organized a New Year’s gathering for the people in our street and the surrounding neighborhood. My husband and I are new, so as a kind gesture to me, they had each person in attendance introduce themselves and also describe the appearance of the person next to them. I liked it. The neighbors seem nice. I at first wasn’t too sure how much to disclose about my situation, but eventually did manage to explain some without launching into some type of self-centered and depressing monologue.

4. The soap making plans. I told you about it already on Monday. I’m hoping my husband will be able to bring my supplies tomorrow. He did ask me to think of another activity we can do together in Lobith, since I asked him to bring all my supplies. I after all didn’t feel it’d be a good idea to let him sort through my stuff. Now that I think of it, several ideas come to mind.

5. Ylang Ylang essential oil. I had this in my diffuser on Monday night when I was too hyper to sleep. It’s a lovely scent.

6. Over 8,000 steps on Tuesday. I walked three times. The other days have also been relatively good in the activity department.

7. The peanut butter-chocolate smoothie bowl we made on Wednesday.

8. Chatting to some fellow clients. Like I’ve said before, most people in my home are non-speaking and severely intellectually disabled, but there are some clients in other homes and at day activities who can speak and with whom I can have a normal by non-disabled standards conversation. I had some nice interactions this past week.

9. Lorazepam. Like I said yesterday, I was in a bit of a crisis. Thankfully, the PRN lorazepam I took worked.

10. Getting my Braille display fixed. Some dots had been stuck up for a few weeks. I thought the thing just needed cleaning, so I was hesitant to call the company to get a tech guy to come over. Turned out two cells were broken. I’m so happy the thing is fixed now. I did okay reading with these few dots stuck up, but still, it was a bit annoying.

What have you been thankful for lately?

Another Crisis

Posted on by Astrid

As those who’ve been following along with my writing will know, I was in a bit of a crisis on Monday. Tuesday and yesterday were better, but today was bad again.

It started out with a horrible nightmare last night. I still can’t shake the thought that I’ll be kicked out of the care facility sooner or later and that was what the nightmare was about. I woke up all sweaty and fearful. I called the night staff to calm me down.

Then by mid-morning, I felt rather insecure. My day activities group is divided into two subgroups. There are three full-day staff for these two subgroups combined, plus one staff who has the short 10AM-2PM shift. Today, one of the three staff who would otherwise stay the entire day, had the short shift too. I didn’t mind as much, as still each subgroup would have one staff for the full day. Then one of the regular staff, who would stay the full day, had to attend to a client one-on-one. The would-be third full shift was a sub, so she needed help doing lunch. So at the end, my full-day staff ended up helping her in the other room and the short-shift staff was attending to my subgroup on her own. She had to help people get around, to the bathroom, etc., too, so I was feeling rather left out. Everything went a little chaotic and that led me to enter the orange phase of crisis prevention.

There are three or four phases: green for adequate coping, yellow for mild distress (this one is sometimes left out), orange for serious distress and red for crisis. I was eventually able to go back to yellow as lunch was served and I ate.

Then I wanted to go into the snoezelen® room to further calm down. However, the music, though it was my favorite calming record, was way too loud. After some time, I ended up having a severe meltdown. I wasn’t able to calm down once back at my group.

In the end, I decided to take a PRN lorazepam and go back to the home to lie on my bed. I slept for two hours straight. Now I’m back to green again.

I’m joining in with #FOWC, for which the prompt today is “Crisis”. The prompt couldn’t have come at a more appropriate time.

Dream #SoCS

Posted on by Astrid

I have a lot of vivid dreams. They suck at times. Sometimes they’re good dreams and I”m sad that they’re just dreams, but most times, they’re really distressing dreams. A few weeks ago, I dreamt that my husband was going to divorce me or I was going to divorce him because somehow (I can’t remember the details) my past identifying as a lesbian was getting in the way. Either I decided I was a lesbian after all or my husband got tired of me having identified as one. Or something. That dream had me distressed for days because I thought it somehow meant something. Like I was unconsciously unfaithful to my husband, which I have no intention of ever being.

Other times, I dream that I’m kicked out of or leaving the care facility. This also scares me, because I am to be very honest not 100% sure it was the right choice to go into it. I mean, yes, it’s much better for my self-care, but it does mean my marriage gets strained by my husband and me not being able to see each other as often as we’d like to or as we used to.

Last Thursday, I was in a bit of a crisis. I had been in the snoezelen® room for two hours on Thursday afternoon and as a result, couldn’t sleep. I also worried about my inability to travel to my husband each week by paratransit due to the limits on how much you can use that service. The fact that I had been in the snoezelen® room for so long and this is not the first time and I’m not sure what I can do during the day, made me think back to my old day activities. Then the fact that I cannot travel to my husband by paratransit even coupled with trains each week, made me think of leaving the facility and going back to live with him. I know this would be unwise in the long run, if for no other reason then because my spot at the old day center has been filled up already.

I E-mailed my staff at the old day center. Then I ran off. I made it to the bottom of the stairs, near the fire exit, before I realized I didn’t really want to run off. By then, the sleepover staff had heard me and called the night staff. She comforted me and I was able to go back to sleep. Back to more dreaming.

I am linking up with #SoCS.

Working On Us Prompt: Psychiatric Medication

Posted on by Astrid

I’ve been thinking of doing some posts on the medications I’ve been prescribed so far, but didn’t get down to it till now. Today, Beckie’s topic for Working On Us is psychiatric medication. Beckie asks a few interesting questions I didn’t think of.

First, she asks whether, when you were first diagnosed with a mental illness/disorder, it took you a while to get used to the medication prescribed. Well, my first diagnosis from a psychiatrist was autism, for which there are no specific medications. It took four months after that diagnosis before I first got put on a daily psychiatric medication. That was Risperdal (risperidone). I didn’t like it at all, even though it took only a few days to kick in.

I remained on Risperdal for 2 1/2 months, and then took myself off. I felt that the medication was merely used to keep me just contained enough that I didn’t qualify for more care. Well, it is my firm belief that medication is not a substitute for proper care.

Going off Risperdal was a mixed bag. I felt okay the first few weeks, but three weeks after having stopped taking the medication altogether, I spiraled into crisis.

After taking myself off of the Risperdal, I was without daily medication for nearly 2 1/2 years. I was in a psych hospital, so I can tell you right away that the crisis service nurse was wrong to say hospitalization would mean being put straight back on meds. Apparently my psychiatrist agreed medication is no substitute for proper care. That was until, despite mostly adequate care, my irritability got so bad I just needed something. I was put on Abilify (aripiprazole) and remain on that ever since.

Beckie also asks about withdrawal. I have been on the same antipsychotic and antidepressant ever since 2010 and never lowered my dosage yet. However, I did for a while take Ativan (lorazepam) at a relatively high daily dosage. Then when I wanted to quit, my psychiatrist said he’d prescribe it as a PRN med. Well, I didn’t need it for the first few days, so I didn’t take it. That was until I started experiencing tremors a few days into withdrawal. I am lucky I got only those and didn’t get seizures or the like. Thankfully, I got put back on lorazepam and tapered safely.

Beckie’s last question is whether you work closely with your doctor in managing your meds. Well, I just had a meeting with the intellectual disability physician for my facility last Monday. She is making sure I get my medications and will also order yearly bloodwork to check for metabolic issues etc. I haven’t seen a psychiatrist with my new mental health team yet, but will soon enough. I want to eventually try to lower my Abilify dose. The intellectual disability physician advised me to wait at least six months to get used to living here though.

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