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.

A Mixed Monday

Posted on by Astrid

Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten too much, but apparently I had. If my husband reads th is, he’s going to say he warned me.

I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.

Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.

When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.

In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.

The Daily Four (August 26, 2019)

Posted on by Astrid

Over at A Guy Called Bloke, there’s a new meme called The Daily Four. I found the questions very inspiring, so I’m participating today.

What was the worst thing you did as a child?
I wasn’t a very naughty child, but my parents claim I terrorized the family. Being autistic, I’ve done a lot of destructive things during meltdowns. I ran away quite often and, according to my mother, was physically aggressive towards her as a teen. One day in particular, I remember ruining my sister’s birthday party (I think it was her 10th birthday) with my meltdown.

Growing up, what was your ideal dream job and did you bring that to a reality at all?
I’ve always wanted to be a writer. Though I only had one piece published in an anthology, I am pretty sure that blogging is a dream come true. I always thought that, like Anne Frank, I’d have my diary published someday. I guess I didn’t realize how unimportant my life is compared to hers.

What were the things you both liked and hated about your schooling?
I was often bored at school during my years in special education, but I liked it there nonetheless. At least I had friends, something I cannot say of my time at grammar school. What I most hated though, was the loyalty conflict I had, because my parents were in constant fights with my school over my needs.

Where there is a will, there is a way! Do you agree?
Yes, usually. Some dreams are unrealistic, but there’s always a way to come close. For example, of course, I will never be a plane pilot, being blind, but if I wanted to, I could arrange to see the inside of an airplane. In fact, I did at age twelve.

Working On Us Prompt: Coping With Crisis

Posted on by Astrid

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.

Thankful Thursday (February 21, 2019): Meltdowns

Posted on by Astrid

Today is Thursday and I’m participating in the Thankful Thursday blog hop. I am thankful for all the wonderful people in my life, who stick by me even when I’m struggling.

We have been struggling a lot lately. On Tuesday, we were in an almost-constant state of panic. Our staff tried to comfort us, but it was hard. They were nice though and even though we were very distressed, they didn’t get reactive.

Then Wednesday didn’t start good either. We had to have a blood draw and the laboratory person was supposed to come to our home. She hadn’t told us at what time she’d come though, so I waited for an hour, not having eaten as instructed, and then left. I was in a meltdown already.

Later that morning, once at day activities, I was on the rocking lounger in the yard. The staff had said she’d come get me back indoors “in a while”. Well she looked through the window and saw me rocking nicely, but then when I wanted to get off, no-one saw or heard me. That’s when I melted down again.

And then, in the afternoon, my husband informed me that he wouldn’t be home from work till 8PM. My in-laws couldn’t have me eat at theirs either, so I would have to be alone at home till 8PM. I was in a huge meltdown again and ran out of the house.

Thankfully, a woman who lives further down the street came to me and calmed me and helped me find the way to my home.

In addition to being grateful for all the nice people in my life, I”m thankful for PRN tranquilizers. My husband has them in a locker, because I’ve taken two overdoses on them in the past. I hardly ever use them, so when I had used my last pill, I’d forgotten to ask my husband for a refill. Fortunately, he did yesterday. He reminds me that even though I hardly use them, I don’t have them prescribed for no reason at all.

My Big Burn-Out #TakeTheMaskOff

Posted on by Astrid

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.