Gratitude List (January 17, 2020) #TToT

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

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

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

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?

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

A Night-Time Crisis

So I really need to get something off my chest. Yesterday was a mostly good day, as you can see from my previous post. However, in the evening, we landed in a pretty bad crisis.

It started out with the evening staff wishing me goodnight at 9:45PM. I still had to brush my teeth, so she asked whether I would manage. Normally I do, so I said “Yes”. When I was done brushing my teeth, my gums hurt from the inflammation and I was considering asking for paracetamol. I mean, I could’ve waited till the pain got severe, as I did the previous night, but then I’d have to bother the night staff.

I also realized the evening staff had left the light on. I had asked her to switch it off (it is a truly stupid switch which I can’t work), but she had asked me how I’d manage without light if I wasn’t ready to go to bed yet. Well, like, how I manage virtually all the time without light. I have light perception, which can be useful but in this case was more bothersome, in that it meant having to go to bed with the lights on. I can write blog posts and do basically everything with the lights off, but I cannot sleep with the light on. So inbetween the argument of whether I would be comfortable in the dark, the staff actually forgot to turn off the light.

As it was only 9:50 and the staff are supposed to be here till 10:15PM, I went looking for the evening staff rather than push the call button. She was gone. Then I pushed the call button. No response. In the next 30 or so minutes, I got increasingly panicked. I heard the buzzer go off so assumed the evening staff either must be somewhere but not care, or she’d left the phone with the buzzer in the house rather than having given it to the night shift. So how would I reach anyone now?

I was very panicked, engaging in self-injurious behavior, screaming and shouting. I was so scared and angry at the same time. If the staff are supposed to be here till 10:15, why did she leave by 9:50?

At one point, I somehow opened the door to leave the unit. Our unit is at the top floor of the building. It is sort of locked, in that my fellow residents can’t work the key to open it. I thought neither could I but somehow I can.

I ran out the door, intending on I don’t know what, going outside or something. My first response in panic is either fight or flight, and in this case I utilized flight quite literally.

A staff from the downstairs unit found me crying at the top of the stairs. Another staff from our neighboring unit came to the rescue too.

It turns out the night shift doesn’t start till 10:30. This is one night staff who caters to the entire facility, so she isn’t physically present on my unit most of the time. Well, how am I going to reach a staff in an emergency if the evening shift leave at 9:50 (or 10:15 in an ideal situation) and the night shift doesn’t come on till 10:30. My staff eventually found the solution of giving their phone to the neighboring unit, where staff is available till 10:30.

Finally, the night staff, who had joined the other two staff in helping me, gave me my paracetamol, plus a lorazepam to calm my anxiety, and turned off my light. Nonetheless, I didn’t sleep till around the second time the clock hit 2:30AM (daylight saving time ending). The night staff, though she hardly knows me as she only works nights, was nice enough to sit by my bedside and comfort me for a little while.

My Encounters With the Police

When I wrote my Share Your World post last Monday, I said I would write more about my encounters with the police. Now that I keep switching between a lot of seemingly meaningful activities and not sticking to one long enough to actually be useful, I thought I’d write this post.

My first encounters with the police, in 2000 or 2001, were for the “crime” of being or appearing lost. I would often go to the grocery store on my own to get candy, even though I didn’t really know my way there. That is, I had been taught, but being that I not only am blind but have the worst sense of direction, I couldn’t seem to get it right. So I often got lost and then people would see me wander aimlessly, sometimes crying in frustration, and they’d call the police. My parents thought the police were stupid.

One time, in 2004, the police threatened to arrest me “for support” if I didn’t go in their van with them. This was my worst encounter with the police, because not only was their use of force excessive (they physically pushed me into the van), but I hadn’t actually been lost.

Once I’d moved into independent living in Nijmegen in 2007, I got involved with the police several times for wandering. They’d take me to the police station, sometimes calling my support staff and other times the mental health crisis service. I was deemed “not crazy enough” for the crisis service to even assess me.

I have probably shared the story of my mental crisis in November of 2007 before. In fact, I know I have, maybe just not on this blog. This involved me threatening suicide while riding a bus. The police were called by the driver and took me to the police station. What I may not have shared, is that I got removed from the train station by the police earlier that day, for the reason that I appeared (and was) confused.

Now that I live with my husband, I sometimes fear police involvement when I wander off. However, this village is so tiny there isn’t any police on the streets anywhere.

Overall, my experiences with the police have been okay, other than the time in 2004 I was threatened with arrest and the time I was removed from the train station. The police in my parents’ city had a good amount of information on me on file, which I’m not even sure they’re allowed to anymore due to GDPR. Now, however, many mentally ill people carry a “crisis card” in their purses with basic information about them, their diagnosis, emergency contacts and what first responders should and shouldn’t do. I have yet to get myself such a crisis card. I will when I’m in supported housing.

Working On Us Prompt: Coping With Crisis

Today, I’m once again joining in with Beckie’s Working On Us Prompt. This week, the topic is to write a narrative of what works for you when facing a panic or anxiety attack, manic episode or other crisis. I don’t get panic or anxiety attacks much or mania at all, so I’m going to describe what works for me when I’m in an emotionally dysregulated crisis.

Like I’ve said before, I have BPD (traits). These are also known as emotion regulation issues. I also experience complex PTSD symptoms. Both can cause me to suffer emotional outbursts. In addition, I can get severely overloaded due to my autism. This can cause me meltdowns, which in some ways are similar to BPD outbursts. In fact, I’m not 100% sure my BPD diagnosis is correct given that autistics, particularly women, are often misdiagnosed as BPD.

Anyway, I usually notice an outburst coming on when I experience an increase in sensory reactivity. I also often start to experience a decrease in my language abilities. I start to stutter or can only make humming noises and repeat the same phrases. My staff at day activities say that when in this state, my communication abilities resemble those of a toddler. It is interesting, in that we have only one toddler alter. When I can’t do something to calm down, I may progress to a full-blown state of meltdown, in which I become angry and sometimes aggressive or self-injurious.

What helps me when I’m in such a state, is to physicaly remove myself from the situation. This is hard though, as often it feels as though everything that happens around me is important. Usually, my staff help me by clarifying what’s important and what is not.

Of course, now that I still live independently, I don’t always have a staff member available to help me sort through a crisis or make suggestions on how I can cope. I, however, have a phone number of a psych hospital I can call in a state when I’m close to a crisis. They can’t do much but listen to me and try to offer advice, but it’s definitely been helpful in some situations. The mental health team that treats me also has a staff available on the phone for crisis intervention during office hours.

Sometimes, when I’m in a really bad crisis, I take my PRN lorazepam. However, I have some experience with it being overused on me in the psych hospital. Like, whenever I’d react to a sound in an irritated tone of voice, staff would tell me to take a lorazepam rather than helping me to figure out what was causing me overload. This has really gotten me weary of PRN medication.

A Timeline of My Mental Health

And yet again, I did not write for almost an entire week. My cold is gone, but now I’m fighting the strong pull of depression. I’m having really dark images in my mind, particularly at night. During the day, I can manage, but often feel too unmotivated and/or uninspired to write.

For this reason, I dug up one of my many collections of journaling prompts. A prompt that spoke to me is to draw a timeline of my life. I’m pretty sure I did this already, but can’t remember whether it was here or on one of my old blogs. I searched this blog for “timeline” and nothing came up, so if this is a duplicate post, I’m sorry. I think I wrote a timeline of my mental health on my previous blog in 2015 or 2016, but I’m just going to write one again.

2006: This was when I entered mental health services for the first time. I had my first appointment with a psychiatry resident on December 12. I was very nervous and could hardly speak a word.

2007: The most eventful year. First, in March, I got diagnosed with autism. I started treatment with a community psychiatric nurse. In July, I started my first psychiatric medication (other than sleeping pills for a while in 2006), an antipsychotic called Risperdal. This was a week before I moved out of independence training to go live on my own. In October, I stopped my antipsychotic again. In November, I landed in a suicidal crisis and was hospitalized.

2008: I remained on the locked acute unit for this entire year. Various follow-up placements were discussed, but none wanted me.

2009: I moved to the resocialization unit.

2010: I got diagnosed with dissociative identity disorder and PTSD in addition to my autism. I started medication again. First, just Abilify (an antipsychotic), but then, Celexa (an antidepressant) was added. I also was put on the waiting list for a workhome for autistic people.

2011: The workhome didn’t work out (no pun intended). Other options were unsuitable for various reasons.

2012: I started to think that maybe I could live with my husband. This wasn’t because I really wanted it (or thought I could do it), but because every other option seemed to have been exhausted and at least my husband wasn’t going to refuse to be with me for needing too much care.

2013: I moved to the hospital closest to where my husband and I had rented an apartment. This was one of the biggest mistakes I’ve made in life. First, my diagnosis of DID and PTSD got changed to borderline personality disorder. This should’ve been a warning sign.

2014: I had to change psychologists. My new one said at our first appt that she didn’t believe I’m autistic.

2015: My husband moved to our cuurrent house. I tried to arrange to be transferred again, but this was refused by my social worker and psychologist. I tried to make arrangements to be placed in supported housing in my new area, but got told that the train has to move on and I had to live with my husband.

2016: My autism diagnosis got removed and replaced by dependent personality disorder, BPD traits and depression not otherwise specified. The process by which this diagnosis came to be, was the weirdest I’ve ever seen.

2017: I got kicked out of the hospital with almost no after care. In my final week, I got some day activities arranged, but that was it. Thankfully, I did get my autism diagnosis back after seeking a second opinion. My current treatment team agree with this diagnosis.

2018: I had a mental crisis at day activities and was told I had to leave that place. Thankfully, I found another place. I started dialectical behavior therapy and movement therapy, but quit again too because I couldn’t really apply what I’d learned. I finally got put on an effective dose of my antidepressant.

2019: I currently get only suppportive counseling with my nurse practitioner. I still take the high dose of both Abilify and Celexa. Would someday like to lower my Abilify dose, but that’s something for the future.

My Big Burn-Out #TakeTheMaskOff

Trigger warning: suicide.

I so badly wanted to finish the #TakeTheMaskOff series on my other blog, but each time a topic comes up, I feel like I already covered that there. I probably did, but then again, I do want to share. After AutisticZebra posted the story of her big burn-out, I’m going to do the same. For those who know me in real life or through my other blog, this is probably old news, but well.

The year 2007 was an extremely eventful year. Three days in and I was given an ultimatum at the independence training home for the disabled I lived at at the time: another major meltdown and I’d be kicked out. The staff had already referred me to the local mental health agency for what they thought was autism, but they just wanted confirmation that they were doing the right thing. They had no intention of actually changing their support style, because they were allegedly already supporting me based on the assumption that I’m autistic.

On February 10, I had said major meltdown. I had had a fight with my parents over them participating in my autism diagnosis the night before and had been incredibly irritable all day. My least favoirte support worker was on shift, a pretty uncaring woman who kept dismissing my panicky response. So I had a meltdown. And several days later, after the staff had conferred, got told that I would be kicked out. The date for my eviction was set for June 1, which was fair enough given that they usually need to give two months’ notice.

Several weeks later, I was finally, at the age of 20, diagnosed with autism. I was relieved. I could start counseling with a very supportive community psychiatric nurse, who managed to convince the staff at the training home to give me more time to find new housing.

By July 3, I was given the keys to my new apartment in Nijmegen, the city where I’d start college. I moved out of the independence training home on August 1.

The three months that followed are a blur to me. I had almost daily meltdowns, in which I ran off or injured myself. The police were called repeatedly, but I “wasn’t crazy enough” to be admitted to a psychiatric hospital.

That is, until one day I was. On Friday, November 2, I had been wandering all day through my parents’ city, where the independence training home was located as well. In the late morning, I had been kicked off the train station for melting down there on my way to the train back to Nijmegen. I couldn’t count on my parents to support me, so desperately, I went to the training home. I wasn’t supported there by the staff either, so wandered through the city for the entirety of the afternoon and part of the evening. A training home former fellow client then offered me to sleep at her apartment for the night, so that we could find a solution in the morning. That wasn’t acceptable to the tstaff, so I was required to leave. I left the training home, took the first bus to the train station and phoned my support worker in Nijmegen to let her know I was going to commit suicide by jumping in front of a train. I probably half realized that this was going to be picked up, but still tried to convince the fellow passengers on the bus not to clal the police. I remember a woman sitting next to me trying to comfort me, saying that help was on its way. At the station, I was picked up by the police, who took me to the police station and rang the crisis service in that city. This was when I finally got admitted to a mental hospital.

Looking back, this is a clear example of autistic burn-out. I was reminded of this once again by the Center for Consultation and Expertise consultant who came to visit me this morning. I was also told by that same consultant that my former psychologist’s twisting the truth to find a reason to kick me out of the hospital – by among other things taking away my autism diagnosis -, wasn’t about me. It was more likely about the budget cuts to inpatient mental health treatment.