My Medication Musings: Phenergan

It’s been a while since I last did a post talking about one of my medications. Today, I want to talk about one I’ve not used in a while: promethazine or Phenergan.

Phenergan was the first PRN medication I got prescribed while in the mental hospital. I remember clearly the state of mind I was in. I had been irritable for most of the afternoon and finally burned my hand using boiling water. This act of self-harm got the nursing staff to fetch the physician. I apparently had a smile on my face when I disclosed my having self-harmed, so he said there was nothing to laugh about. Obviously not, but I struggled to express my emotions. He offered me a PRN medication. I’d heard of Phenergan before and what I’d heard about it from autistic people, wasn’t good. However, I still agreed to take it.

Phenergan, for those not familiar with it, is a low-potency classic neuroleptic. It is currently mostly used as an antihistamine to treat allergies and such.

That evening, I was totally wiped out from the effects of the medication. I just lay on the couch or in bed feeling stoned out of my mind. That was what I needed at that point.

After that, unfortunately, I was prescribed oxazepam as my default PRN medication. Some years later though, I got prescribed Phenergan again after I’d pretty much exhausted all benzodiazepine options.

Unfortunately, by then, Phenergan did nothing. I only took it to make myself and others feel like I was doing something about my distress. At one point, my new psychiatrist once I was living with my husband, even suggested I swap it for a vitamin C pill so that I would still have the placebo effect but not the side effects. Not that I was having any side effects.

A few months later, however, I took an overdose of Phenergan that landed me in the general hospital. That was when I decided not to request a refill of the Phenergan. I by that time had lorazepam, which worked some but of course had the addictiveness as a negative. However, I’m not supposed to take PRN medications regularly anyway.

Coffee and Tea: My Favorite Hot Beverages

I’ve had a post by this title in my Drafts folder for over a month. I originally started to write it for my letter C post in the #AtoZChallenge, because I didn’t feel like writing a self-care themed post. I ultimately did anyway and this post sat in Drafts forever. I didn’t actually end up writing about coffee or tea in the draft. The post was, or so I believe, inspired by a fellow blogger’s question of the day or something. Anyway, today let’s discuss hot beverages.

I should really ask my parents whether they still have this photograph of me drinking one of my first cups of coffee and, if so, whether they can digitally send it to me. You see, I was about six when I first started drinking coffee and I hated the taste. I truly had a disgusted look on my face!

I at the time drank coffee with lots of milk and sugar in it. The milk was supposedly to lessen the impact of caffeine. I always left the sugar sitting at the bottom of the mug and spooned it up after finishing my coffee. I hardly ever drank tea as a child. When I drank it, I had milk and sugar in it as well.

When I was around fourteen, I had a weird nightmare about someone having switched the sugar with some type of poison. After that, I acutely decided to leave the sugar out of my coffee. Then some years later I left out the milk. Now I drink the pure stuff, but I still get the same disgusted look on my face that I got as a six-year-old. Guess I’m addicted.

With respect to tea, it took me a long time to figure out what I liked. When I was around nineteen, I somehow convinced myself that I liked strong, black tea. Well, I don’t. Then followed rooibos, which my fellow patients and I at the psych hospital referred to as stress tea for its supposed calming effect. I went through a phase of particularly liking rooibos with strawberry-whipped cream flavor.

Then followed Earl Grey tea, because my now husband was into it. I tried a lot of different tea flavors with him when he visited me at the psych hospital.

I don’t even remember when or how I got into the green tea phase. In any case, I now drink pure green tea only. Some years ago, I tried green tea with pink pepper and pineapple flavor because my mother-in-law had bought a package, but I really didn’t like it. I, by the way, drink my tea without sugar too.

Are you a coffee or a tea person? How do you like your coffee or tea?

Expressing Faith By Expressing Anger

Last week, for some reason, I felt called to listen to a church service. When I do, I usually listen to United Church of Christ services, though occasionally I check out Protestant Church in the Netherlands services locally too. The service I ended up listening to was delivered at Mayflower Congregational UCC in the Oklahoma City area. It was titled “disorientation”.

The topic was how many Christians think they’re not healthy or whole enough to attend church. Many Christians are taught to believe that we shouldn’t show our distress or be angry with God. Though I grew up in an atheist home, I too was taught not to complain or be angry. “Gets angry easily” was often written about me in psychological reports. This may have been so, but anger in itself isn’t bad.

Rev. Lori Walke, in her sermon from May 10, talks about the psalms, nearly half of which are psalms of lament. In one of the psalms she discusses, psalm 13, David cries out to God in anguish:
“How long, Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
Look on me and answer, Lord my God.
Give light to my eyes, or I will sleep in death,
and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.” (Psalm 13:1-4 NIV)

Rev. Walke goes on to recite the rest of the psalm:
“But I trust in your unfailing love;
my heart rejoices in your salvation.
I will sing the Lord’s praise,
for he has been good to me.” (Psalm 13:5-6 NIV)

This expression of anguish shows, according to Walke, that David deep down still has faith. After all, if he didn’t believe his anger would do anything, what good would there be in expressing it? As such, those who hold their anger inside and keep silent, usually are more hopeless than those who cry out.

This is why Walke invites us all to take our troubles to church. We don’t need to put up a happy face all the time. Indeed, in our expression of anger, we also show an expresssion of faith.

This totally struck a chord with me. I was taught as a child not to express my anger. Like I said, it was said about me that I was angry too easily. When I landed in the mental hospital at age 21, I even for a while had the unofficial nurses’ “diagnosis” of “angry and dissatisfied”. While there definitely was some truth to this, stuffing my anger only fueled my hopelessness. It was in my expressing my despair that I also showed that deep down I still believed in a good outcome.

Joining in with Let’s Have Coffee.

Three Years Out Today!

Yay, I’m three years out of the looney bin today! In a way, I’ve come so far. I’ve genuinely tried living independently with my husband. I mean, each time I was in a crisis in 2017, I told the consulting psychiatrist seeing me in the hospital that I was fine going home. I asked for more help each time, which I was given. This little (or not so little) voice inside my mind still tells me those overdoses were manipulative and I should not have gotten the help I asked for. They were impulsive each time, but at the time of taking those pills, honestly I didn’t think: “If I do this and survive, I’ll ask for more help.” Truthfully, I didn’t think much at all.

Then in early 2018, I had a crisis at day activities. That was what started me on my journey of admitting I truly couldn’t – or wouldn’t, as this not-so-little voice tells me -, live independently. At first, when the Center for Consultation and Expertise consultant asked me what I wanted, I said I wanted to live close by a living facility so that I could walk over or call for support. On September 20, 2018, I eventually told my support coordinator that I’d really want to go into a living facility with 24-hour care. She then called the consultant, who was still willing to help us on this journey.

We filed the request for long-term care funding in December of 2018. It was denied on February 27, 2019 on pretty weird grounds. We appealed and our appeal was granted on June 4, 2019 on actually about as weird grounds. I mean, the Long-Term Care Act fails to recognize the implications of multiple disabilities, but how the appeal lawyer managed to find a workaround, still baffles me. I don’t care though, as unless the law changes, we won’t have to apply again.

And here I am, nearly eight months into living in the long-term care facility in Raalte. Still, this not-so-little voice nags me each time I try to open up about my needs. My mother’s voice speaks to me again. When I’d just landed in crisis in November of 2007, she called me to reprimand me about going into the psych hospital. “You can’t even wipe your butt without your support worker’s help,” she said. It wasn’t true then and it isn’t true now, but I feel ashamed each time I ask for help, particularly with personal care stuff.

I had a session with my CPN from mental health this afternoon. I do an eHealth module on self-image, so we got talking about that. I got to say that one of my main reasons for having a negative self-image, is that each time I think positively of myself, or validate myself, this not-so-little voice tells me again that I’m manipulative. This seems to be at the core of many of my issues and yet I cannot even say rationally that it is certainly not true.

X-Patient: Psychiatric Rehabilitation and the Recovery Movement #AtoZChallenge

Okay, welcome to my letter X post in the #AtoZChallenge. I’m not really motivated for this one, but I don’t want to give up on the challenge either. My topic today doesn’t really fit in with the rest, but well. Today I’m writing about what it is like to be an ex-psychiatric patient. In the anti-psychiatry movement, some people choose to write this without the E, so it counts.

When I first heard of psychiatric rehabilitation around a year into my psychiatric hospital stay, I hated the entire concept. It was all based on training people to be more independent whether they wanted to or could do this at all. I knew already that I needed long-term care, so I was like: “Didn’t I just complete 18 months in a training home only to have it fail?”

Then, a few years later, I heard of the recovery movement. Unlike psychiatric rehabilitation, this is entirely patient-led. I signed up to participate in a recovery course. What surprised me immediately was the fact that my mental hospital chose to only allow those staying there as inpatients on the course. They later started a course for outpatients too. I loved this course. Going into long-term care wasn’t frowned upon but seen as a means of getting my life back on track. Unfortunately, that’s not how most professionals, at least on my last unit, saw it.

A few weeks ago, I watched a short video on a Center for Consultation and Expertise case in which the recovery viewpoint was misapplied to an autistic man. Indeed, I’ve never felt that concepts like “rehabilitation” apply to autistics. I mean, the idea that we all want a meaningful life, is good. However, considering a meaningful life as the same as independent living, is in my opinion rather misguided.

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.

Thankful Thursday (March 26, 2020): My Staff’s Approach to a Meltdown

Today I’m having a really hard day. I found out this morning that my husband is not allowed to visit me for the duration of the COVID-19 situation. Only in exceptional cases such as when you’re terminally ill can you have a visitor. Well, I guess I’m grateful I’m not in that situation.

During this time of day activities at the home and the chaotic situation that ensues, I’m struggling a lot with basic mistrust. As I explained to my staff, including the behavior specialist, some weeks ago, I’m finding that I experience a lot of distress due to past trauma. I’m pretty sure I suffer with significant attachment issues and am acting those out towards the staff now that I’m beginning to feel slightly safe. I mean, there’s a part of me who says that if the staff truly know me, they’ll kick me out of here or abandon me in some other way. I guess this part is giving the staff a hard time because they’ll ultimately abandon me anyway so I’d better push them away first.

As such, this afternoon, I had a major meltdown. I was watching a video on the Center for Consultation and Expertise website about a man with mild intellectual disability who had a lot of challenging behavior. The way in which I could relate to him, triggered me. I tried to tell my staff, but couldn’t and then I threw a glass to the ground.

Now here comes the reason I prefixed this post with Thankful Thursday: my staff were amazing about it!

My assigned support worker, who happened to work on my side of the home today, called another home for a staff to come over. This was a staff who had also worked in my home previously. She hugged me and took me to my room to talk while my assigned staff cleaned the mess.

This did further trigger me, but it was a good trigger. I mean, in the psychiatric hospital I would’ve been secluded or kicked off the unit and basically abandoned. I had tears of gratitude and sadness at the same time because of how lovely my staff handled this situation. My assigned staff even said maybe we should watch the video together sometime so that I could point out in which ways I relate.

Now here’s hoping my behavior won’t escalate further. After all, then I may in fact be abandoned. My inner critic still says that I’m making up all the factors behind my challenging behavior and it’s all just attention-seeking and abandonment is exactly what I deserve. Regardless, I’m so extremely grateful for my staff!

A Letter Explaining My Life Right Now

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

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.

The Third Day of Christmas

I’ve seen a lot of people share their favorite holiday-themed memories. I’ve wanted to share mine, but also felt rather unmotivated to actually sit down and type. Today it’s Sunday and I came home to the care facility from spending the week-end with my husband earlier than usual. I guess it’s about time I share some Christmassy cheer.

My memory isn’t really about Christmas though. Or even boxing day. I know there isn’t such a thing as boxing day in the United States. Well, here in the Netherlands, what British folk call boxing day is called the second day of Christmas.

From there on, many people count the day after that, December 27, as the third day of Christmas. Some go on to count the fourth and fifth day of Christmas. I’ve never heard someone refer to December 30 as the sixth day of Christmas though, and the fourth and fifth days are rare too. But the third day of Christmas is pretty much a thing here.

I first met my now husband Jeroen six weeks before landing in the mental hospital. I was hospitalized in early November and still didn’t have independent off-ward privileges by Christmas, let alone that I could visit family.

Jeroen had family obligations over Christmas and boxing day, of course, but he was free on the third day of Christmas. That’s how came he visited me in the hospital that day, December 27, 2007. Please realize we weren’t officially in a relationship then. He probably knew that he wanted to be by this time, as he told me he loved me on January 7, but I definitely wasn’t yet sure and just saw him as a friend.

Now that I write, I realize I hardly even know what we did that third day of Christmas. He probably accompanied me to the nearby hospital cafeteria, where we had a cup of Earl Grey tea. Or maybe I had coffee. I’m pretty sure he had some kind of tea.

A year later, in 2008, we were officially in a relationship and he asked to meet me again on the third day of Christmas. Same ward still, as I spent an incredibly long time (sixteen months) on the acute ward. I had off-ward and even town privileges by this time, but I think we met again at the cafeteria. He said the third day of Christmas was our traditional day to meet from then on. I’m not sure whether we stuck to it much, but this year, inbetween the two days of Christmas and the week-end that follows, I’m also spending the third day of Christmas in our home.