In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

It’s Just Another Manic Monday #Blogtober20

Today’s prompt for #Blogtober20 is “Manic Monday” and how appropriate this is today! One of my day activities staff celebrated 25 years working for this care agency. For this reason, the manager and a few of her coworkers from the day center came round for coffee and cake. You see, the day center is still not operating as usual due to COVID-19 restrictions and this staff usually provides day activities at my home now. She did visit her normal day activities group for a bit in the afternoon, where currently another home’s clients do day activities.

Anyway, due to the manager and some other staff coming by for a visit, it was really hectic here this morning. I did enjoy a cup of coffee and some cheesecake, but I was really overloaded most of the time.

The staff had really done her best to make us feel festive. In addition to the cheesecake, we got Airfryer snacks for lunch and candy bars with our afternoon coffee. Another staff had also decorated the home with photos of this staff from throughout her career.

Thankfully, I managed a mid-morning walk after the manic events of the manager’s speech and coffee with cheesecake. That went well, although my accompanying staff’s chatter did get a bit on my nerves.

I spent the afternoon so far relaxing in my room or having coffee with a candy bar. I still need to make a present for this staff, like a soap, but that can wait and of course isn’t a requirement. I did after all contribute to the home’s gift to this staff.

This evening, I intend on checking other blogs and just chilling out in my room. If it’s not raining, I might go for a walk after dinner. I may also read a little. Right now, I’m reading a Dutch book chronicling a year in the life of an obstetrician.

Normally, my Mondays aren’t as manic as today. In fact, I like the hustle and bustle of it, compared to boring Sundays. After all, I spend a lot of my Sundays in bed. On Mondays, day activities start back up, so I normally go for a walk or two and/or make a soap or some other craft or DIY project.

Of course, compared to parents or people who work, I’m not as busy even on a Monday. I mean, I still get more than enough time to relax and even the activities I do during the day, don’t feel like chores or work. I do, however, feel easily overloaded by lots of stimulation, so it’s exactly right the way things are right now.

#Blogtober20

#WeekendCoffeeShare (July 19, 2020)

Hi everyone on this sunny Sunday evening. It isn’t hot or too sunny here, but the sun does shine and it’s warm. Around 22 degrees Celsius. I like it. Today, I’m joining in with #WeekendCoffeeShare. Grab a cup of coffee, tea or your favorite soda. I think the staff also put some water in the fridge to be cool. Let’s catch up.

If we were having coffee, I would share that the week started off rather rough. Like I wrote on Monday, I was feeling rather overwhelmed. Thankfully, as the week progressed, my mood and general wellbeing got a little better. I still experience some level of pain on a daily basis. Not 100% sure why, but at least right now it’s manageable.

If we were having coffee, I would tell you about the physical therapy appt I had on Wednesday. The physical therapist noticed I was pretty tense all over. She might give me some exercises and is going to massage my back next week. She also put tape on the inside of my knee, because I overextend it. I have known I do this for nearly 20 years, but thankfully it didn’t cause significant pain until recently.

If we were having coffee, I would tell you about all the beautiful jewelry-making supplies I received in the mail yesterday. I had ordered them from a children’s craft supplies store that I didn’t know before. When the things got shipped and yet I didn’t receive them the next day, I checked and it turned out they had to come from England or something. As such, it surprised me that they did get here on Saturday. The best part is a collection of 90 silver-colored charms. They are truly beautiful.

If we were having coffee, I would share that my husband took me to our home for a night yesterday. We got takeout pizza at my favorite pizza chain. I think my husband entered my E-mail address, because I got a lot of advertising in my inbox today. That’s no problem though.

If we were having coffee, lastly, I would tell you excitedly that I rediscovered at least part of my gemstone collection. I had been wanting to order new gemstones about a week ago and had been thinking or had dreamt that I’d left my collection at the student apartment when I moved out of there in 2010. Turns out my husband has two of the four boxes I had at our home. I guess the other two are either at my parents’ or indeed gone.

I loved telling my husband about all the gemstones in the collection. Sadly, I forgot to take pictures and didn’t take the collection with me to the care facility. I might select some stones to bring here.

How have you been?

I Am Overwhelmed

Yesterday I sat in front of my computer for an hour or more typing up a blog post, only to erase it again because I couldn’t find the proper words to finish it. Today I’m trying again.

I am horribly overloaded. To be honest, even the mere thought of having to write a blog post, adds to that. So why do I do it? I guess this post won’t get many views or much engagement at all, so why bother? Then again, I may be able to get my rollercoaster of emotions to slow down a bit if I write stuff down.

Last Saturday, I attended an online meeting of CP Netherlands, the national charity for people with cerebral palsy and their parents. I wasn’t sure whether to attend, as I’m not 100% sure my mobility impairment is severe enough to count as CP. Of course, the other attendees advised me to get a referral to a rehabilitation physician to find out.

Of course, just self-understanding isn’t a reason to get assessed for CP as an adult. However, I’m noticing that my mobility gets somewhat worse and I experience more pain. This could be my being overweight, of course. I will also get orthoses soon to help with the position of my feet. This might help.

In the meeting and later in the CP Facebook group, I shared how all my past professionals said my issues weren’t due to the disability they were assessing for. For example, the occupational therapist from the blindness agency said that my difficulties weren’t due to blindness. The OT for the psych hospital said my motor ability was more or less fine. At least, I didn’t have significantly less strength in my left hand than my right. The neurologist consulted when I earlier complained of worsening mobility, said it wasn’t my hydrocephalus either or if it was, my issues were not severe enough to warrant risky surgery. I agree. However, ultimately, my psychologist concluded everything was fine and I was just being dependent.

I asked my staff to talk to the physician for my facility and maybe the physical therapist about my mobility impairment. I after all do experience worsening pain and what may be spasticity. I’ll hopefully hear back soon.

Then today I experienced terrible sadness. I was overwhelmed by some sounds other clients made in the living room, but felt bad going to my room. My assigned staff said maybe I expect too much of myself. I mean, I’m half convinced that I’m deteriorating, which my staff doesn’t see. Maybe I indeed need to take a break. Lower the bar on my step goal now that my broken Fitbit won’t notice anyway. Stop wanting to write a blog post everyday, or really more than one. Be content with just two or three 20-minute walks a day and relaxing the rest of the day. I’m not sure. This feels so much like giving up.

Writer’s Workshop: If I Could Change One Thing About Myself

Mama Kat in one of her prompts for this week asks us what one thing we would change about ourselves if we could. She also asks us to think on why it can’t be changed.

This is pretty much a no-brainer to me. If there’s one thing I could pick to change about myself, it would be to widen my window of tolerance. The window of tolerance is the window at which point someone is stimulated enough that they aren’t bored too much, but not so much that they are overloaded. Each individual’s window of tolerance is different. Some people thrive on challenging activities and exciting stimuli. Others can barely handle any sensory or cognitive demands. I belong to the latter category.

If I’m correct, the window of tolerance also refers to the ability to tolerate distress or frustration. My distress tolerance is and has always been extremely poor.

So why can’t it be changed? Well, I tried. Ever since I was a little child, psychologists have recommended I work on distress tolerance. Now I must say I really wasn’t aware of the problem at all until I was about eleven, but even when I was, I had no idea how to heighten my distress tolerance.

My tolerance for sensory and cognitive demands was manageable up until I suffered autistic burnout at age 21. I mean, I was in classrooms with 30+ students in them, doing my schoolwork at a high level high school. Ever since my burnout though, I’ve hardly been able to function in group settings without getting overloaded. I also can’t seem to handle any sort of pressure.

In 2017, when I was being kicked out of the psychiatric hospital, it was recommended that I do dialectical behavior therapy (DBT). One of the modules of DBT is distress tolerance. The community psychiatric nurse (CPN) who started DBT with me, even wrote increasing my frustration tolerance as a treatment goal without my having asked her to. I didn’t see how I could work on this. After all, seeing this goal written on my treatment plan already created such immense pressure that I felt overloaded without even trying to work on the goal.

I know I have a bit of an external locus of control. This seems to be tied in with poor distress tolerance. I mean, it isn’t that I genuinely think the world owes me a sensory-friendly, low-demand environment. However, I can’t see how I can work on changing my ability to handle sensory stimuli, demands and distress.

Mama’s Losin’ It

A Mixed Monday

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.

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.

Socially Awkward #SoCS

I am socially awkward. Before I was diagnosed with autism, this was how I saw myself. I even had an E-mail group on Yahoo! Groups titled socially_awkward. This was for adults and teens with social issues of any kind.

Indeed, the main symptom of autism is still seen as social communicative difficulties. I do have them, mind you, but I don’t see them as my main symptom of autism. My main symptom is overload, both cognitive and sensory.

Then again, like I said, I do have issues with social interaction. I haven’t had a friend other than my husband since special education junior high in 1999. I tended often to be too clingy. In this sense, I guess I exhibited the “acctive but odd” style of social interaction that is often exhibited by males on the autism spectrum and is seen as the least impaired style, common in those diagnosed with Asperger’s Syndrome. Yet I do experience severe impairments in other areas.

When I was older, I tended to exhibit a more passive interaction style. Then again, when at meetings, I can still be dominating. This is probably why the people in the Dutch DID group decided I wasn’t safe. They kicked me out, officially because they believed I didn’t have DID or had imagined it, but they cited as reasons for this that I talked bookish about my issues. Well duh, that’s typical of autistic active-but-odd interaction.

But back to how mild or severe my autism is in terms of social interaction or other symptoms. I was diagnosed as ASD level 1 under DSM-5, so the mildest severity level. The reason is probably that I can hold down relatively normal-sounding conversations in structured settings and with people of my intelligence level. At least if they’re focused on me, which diagnostic interviews usually are. I cannot keep up a conversation about someone else for long. This may be why some people, including my parents, used to see me as selfish. I tend to want to dominate or talk about myself. That is, I don’t really want to, but it is the most natural.

In the second symptom category of autism, which is restricted and repetitive behaviors, I was also diagnosed as level 1. I disagree, particularly because sensory issues have been added to the criteria and I’m severely impaired with regard to that. I stim all the freakin’ time, for example. I feel I should definitely be level 2 on this symptom category.

This post is part of #SoCS, for which the prompt this week is “social”.

Cerebral Palsy: And Other Effects of my Brain Injury #AtoZChallenge

Welcome to day three in the #AtoZChallenge. I am feeling a little off today, as my support worker canceled our appointment tomorrow and my husband will be home from work late this evening. For this reason, I’m feeling a little unmotivated to write. I hope that forcing myself to write today’s A to Z post anyway will help me snap out of the bad mood. Today, I am sharing about a disability that I have had since infancy, but that I didn’t know much about till a few years ago.

Like I mentioned on Monday, my autism diagnosis got taken away in 2016, because my then psychologist thought my having had a brain bleed as a baby precludes an autism diagnosis. It doesn’t, but it did help me gain some new perspective on my issues. Could I possibly be suffering from the effects of neonatal brain injury?

I asked my parents, starting with the obvious. I have left-sided weakness, affecting both my arm and leg, which I assumed was due to the brain bleed. I had heard of cerebral palsy and had figured out I might have this. I asked my father, but he didn’t answer my question. Possibly, he wasn’t told by the doctors, because my mobility impairment is relatively mild.

I did see a rehabilitation physician and had regular physical therapy until I was around eight. I also needed a cast on my left foot because my achilles tendon was at risk of becoming too short. Later, at age fifteen, I was diagnosed with scoliosis. This isn’t so uncommon that it alone warrants another diagnosis. However, coupled with all the other issues, I put two and two together.

Cerebral palsy, for those who don’t know, is basically a mobility impairment due to a brain injury acquired in utero, at birth or in the first year of life.

I finally went to my GP in 2017 to ask him, again focusing on my mobility impairment. This, after all, is the defining characteristic of cerebral palsy. I was just told I had acquired brain injury.

Still, in late 2018, I joined the national CP charity in my country. When I went to their conference in November, all puzzle pieces fell in place. Not only were my symptoms – not just the walking difficulties – characteristic of CP, but I met people with milder walking difficulties than mine who had been diagnosed as having CP.

There are five different levels of CP, depending on gross motor functioning (ability to walk or otherwise move around). People in level 1 and 2 can walk independently, though those in level 2 require some handheld mobility aids for long distances or on uneven ground. I would probably score as level 1 or maybe 2, but this motor functioning assessment is appropriate for children and adolescents only. There are also several different types of CP, depending on which limbs are affected and how. I probably have spastic hemiplegia, meaning CP affects one side of my body only.

Currently, I am not looking for an official CP diagnosis. I probably had one as a child, so digging up my old records may reveal it, but I’m not in a position to do so at this point. I also wonder what benefit I could gain from this. The support groups for CP on Facebook allow me in based on the facts of my brain injury and resulting mobility impairment. Besides, like my GP said in 2017, a physical or occupational therapist treating me for my brain injury would have to take into account the major disability of my blindness. Maybe, should I ever go into long-term care for the blind, I’ll be able to afford support for this.

A diagnosis of cerebral palsy requires mobility impairments, but a brain injury can have other effects. At the CP conference, the first presentation I attended was on overload. The same cognitive and affective difficulties that people who acquire a brain injury later in life can endure, can affect those with neonatal brain injury. In that sense, my psychologist may’ve been correct that my emotional and cognitive impairmetns are due to that.

Autistic: Living Life on the Spectrum #AtoZChallenge

Welcome to day one in the #AtoZChallenge, in which I’ll share a collection of miscellaneous musings. For my first post, I’d like to talk about a topic people who used to follow my A to Z posts on my old blog, are thoroughly familiar with, since I chose it for my theme in 2015 and 2017: autism.

I was first diagnosed with autism at the age of 20 in March of 2007. The clinician who diagnosed me, didn’t give me an Asperger’s Syndrome diagnosis, like my support staff at the time had wanted. I didn’t care, as I at the time already didn’t subscribe to the rigid subtypes of autism, be it Asperger’s, PDD-NOS or classic autism, or high-functioning and low-functioning autism for that matter. I believe autism is a spectrum condition presenting differently in every affected person.

Later, in December of 2007, I was diagnosed with Asperger’s after all. This remained my diagnosis, along with a few mental health conditions, until the summer of 2016. Then, my autism/Asperger’s diagnosis got taken away. The psychologist who changed my diagnosis, claimed that my premature birth and the brain bleed I suffered as an infant, preclude an autism diagnosis. As if those genetically wired to be autistic are somehow exempt from being born prematurely or suffering brain bleeds. I know that, because the exact cause of autism is still unknown, it may be hard to differentiate autism from the mental effects of brain injury. However, since said psychologist couldn’t diagnose me with acquired brain injury either, because I sustained the brain bleed before age one, I ended up with no diagnosis at all that could explain my social cognitive differences.

I sought an independent second opinion and, on May 1, 2017, was rediagnosed with autism spectrum disorder under DSM-5. I am diagnosed with level 1 ASD, which is the mildest kind. I am pretty sure that, if the psychologist had taken the opportunity to assess me in a more natural environment, I’d be diagnosed as level 2.

Autism is still diagnosed based on the presence of social communicative difficulties and repetitive behaviors and interests. As of the release of DSM-5 in 2013, sensory issues are finally part of the diagnostic criteria. In my opinion, they aren’t given nearly the amount of attention they deserve. Neither are executive functioning difficulties. This is a term which describes organizational skills. I scored high for ADHD on the initial screening tool, but couldn’t be further assessed for it. Though I’m pretty sure I have some ADHD-inattentive traits, they could just as easily be part of my autism.

Autism, like I said, presents with social communicative differences. These include, in my case, difficulty making and keeping friends, difficulty interpreting non-literal language and tone of voice. Of course, because I am blind, I cannot read body language. My conversations also tend to be one-sided, in which I’m either the listener or the talker.

The other criterion of autism is the presence of repetitive behaviors and interests. I engage in near-constant stereotypical, self-stimulatory movements (or “stimming”). My language can also be repetitive, but this is particularly clear when I’m overloaded. As for special interests, I don’t have a lifelong obsession, like Temple Grandin does with animal behavior. Rather, my interests, though they change often, can be obsessive in intensity and focus. For example, I used to have an obsession with calendar calculation (calculating what day of the week a certain date falls on).

My main autistic trait though is overload. This is also a common brain injury symptom. In that sense, I’m doubly blessed.. I tend to be both sensorially and cognitively very easily overloaded. This then causes me to stim more, use echolalia (repeat other people’s words) and may lead to meltdowns or shutdowns.

Something interesting about overload is that it rarely occurs when I’m engaging with my special interests. This may make you think I’m just lazy, but I’m not. For one thing, my special interests involve little offline interaction. For another, they are my special interests because I’m good at them.

I hope that through this post, you’ve gotten a little glimpse into my life with autism and learned something new. For those not aware, April is autism awareness month. I encourage you to read other blogs by autistic people. You will find that most have a kind of difficult relationship with autism awareness month. I, like them, prefer autism acceptance.