Kids: Being Childless Sort Of By Choice #AtoZChallenge

Posted on by Astrid

Welcome to day 11 in the #AtoZChallenge. For those who followed me on my old blog last year, I chose “children” for the letter C post then. I can’t remember what I did my K post on and am too lazy to look it up, so I’m just taking the opportunity to talk about children again. I hate the word “kids”, but oh well.

You see, I have no kids. At 32, this is a bit abnormal already and it’s becoming more so as I age. The reason I don’t have kids, is complicated. Let me explain.

As a child and teen, I always thought I’d have children as an adult. Even during the time, in my mid to late teens, when I thought I was a lesbian, I thought it would be a given that I’d have children. I didn’t imagine a man in my life, nor did I think of how else I’d conceive, but I always knew I would have kids.

This changed after my major psychiatric crisis when I was 21. For the first year or so, I was busy with merely surviving and getting to see a future for myself other than suicide. Then, my post-traumatic stress symptoms started to emerge.

When I was 27, I made the conscious choice not to try to conceive. I had in the meantime met and married my husband and he agreed. He would even support me if I’d want to get sterilized and said I would most likely have no problem geting the procedure done, given that I’m multiply-disabled. He’s likely right, even though this is extremely ableist.

I know I, personally, couldn’t care for a child. This doesn’t say anything about other people with my combination of disabilities, but it is true in my case. Having made this decision puts me somewhere on the fence between childless and childfree. I am in communities for both on Facebook and find that I’m a little out of place in both. Over the years, I’ve moved more towards the childfree side, as I am realizing I don’t experience my biological clock ticking. Rather, my wish to be a parent is more based on societal expectations. As I once said, I’d want to be a Mommy blogger. Well, I guess that’s not the right reason to try for kids.

Job: What I’d Want to Do If I Were Employable #AtoZChallenge

Posted on by Astrid

Welcome to day ten in the #AtoZChallenge. As with most difficult letters, I’ve had a theme word for today’s post in mind for a few days but wasn’t sure how to go about it. I am pretty tired already, so this will be a bit of a random ramble.

I am unemployable according to the Dutch social security administration. The guidelines for this were revised in 2015 and I was scared that I’d be deemed employable. After all, the guidelines say that someone who can do at least one task that is part of a job (so not a full job) and who has basic employee skills, is often employable. These skills that are part of a job, include for example doing the dishes. I thought I could do this until my husband informed me that I can’t. He also felt I didn’t have basic employee skills such as coming on time and accepting leadership. Apparently, the social security people agreed.

Until I had my major crisis at age 21, I thought I’d be perfectly employable and not just by the current standards. I was convinced I’d be able to have a regular, in fact high-level job. I studied linguistics and wanted to become a speech-language pathologist.

If I were to design my ideal job, I’d however be a type of social worker with some educational psychology involvement. I would be the person to find out what people in complex care situations really need and try to deliver that. Of course, with my poor social-communicative skills, I will never be a social worker. Educational psychology is also pretty much inaccessible a field to the blind because of its heavy reliance on statistics.

I think I’m pretty good though at coming up with creative solutions to problems at least when they are within my field of interest. I can be critical of my staff and often ask them why they do things a certain way. They are not always able or allowed to tell me, as I’m just a client. However, if I were a support worker, social worker or the like, I would not run into this.

Ever since I was old enough to be aware of my own unique situation within the care system at around age twelve, I’ve been wanting to be this kind of ed psych/social worker mix. I was convinced I could help prevent other people in similar situations to mine from falling through the cracks.

I tried to study applied psychology at college one year. With this one year behind me, I could’ve chosen a major such as social work or psychodiagnostics. I didn’t, after all, because my communication skills teacher told me I would be passed on the oral test if I didn’t continue in this field. This feels a little sad to me, but I still have the capacity to learn on my own terms. I will most likely never be employable, but I can still learn new things in this field.

Independence Training: My Journey Through Rehabilitation Programs #AtoZChallenge

Posted on by Astrid

Welcome to day nine in the #AtoZChallenge. I wasn’t sure what to write about till literally minutes ago. My support coordinator was in touch with the long-term care funding agency today. I still can’t disclose details, but it brought back memories of all the rehabilitation and training programs I’ve been in. Let me share.

I didn’t get a lot in the way of independence training while at the school for the blind, but I got some. It wasn’t efffective though. I don’t know why, but part of the reason was probably my parents constantly arguing with the school on what was important for me to learn. Another reason was my struggle with generalizing skills I’d learned at school into other settings. Once I went to mainstream secondary school, I didn’t get any independence training at all. I was pretty bad at life skills by the time I graduated high school.

I decided not to go straight to university after high school. Instead, I chose to go into the country’s only residential rehabilitation center for the blind’s basic program. I learned some skills, but still had trouble making use of them in the real world.

The same happened when I went into an independence training home. At first, I thought highly of myself and wanted to do things independently I really couldn’t. My plan was to get training for eight months and then leave for university. Those eight months became eighteen and then I was basically made to go to university.

I tried a ton of independence training while hospitalized on the psych unit too. It didn’t work. Whenever I tried to do something independently, such as clean or travel using my white cane, I struggled greatly. I didn’t fully realize this, not even at the long-term care assessment last January, but I really overestimated myself. My husband can attest to that. He’s had to get me out of trouble many times.

Why I struggle so much, no-one has been fully able to figure out. It’s probably a combination of my multiple disabilities (blindness and cerebral palsy) and my emotionally low functioning level.

It’s been recommended that I get more independence training. Maybe, after I complete dialectical behavior therapy for my emotion regulation issues, I’ll not feel as frustrated with myself and be more able to learn. I don’t think this is going to solve the problem though, since doing something with someone present, isn’t the same as doing something on your own.

Healing From Childhood Trauma: Progress I’ve Made #AtoZChallenge

Posted on by Astrid

Welcome to the #AtoZChallenge, day eight. It’s already nearly 9PM as I start writing this post. I wasn’t home from day activities till 5PM, then had dinner and then drove 50 minutes one way with my husband to pick something up he had bought. On our way back, we stopped by McDonald’s, which was fun.

Anyway, today’s theme is healing. I was inspired to choose this theme by yesterday’s post, in which my final goal was to heal from my childhood trauma. Let me share today how far I’ve come on my journey.

My trauma-based symptoms first became fully apparent in 2009 or 2010. I had moved from a locked acute psych unit to a resocialization unit in early 2009. Once I developed trust in my staff, I apparently felt more ready to uncover the trauma-based conditions I’ve been living with all my life. You see, my trauma started early on and is in some respects ongoing.

When I started to open up about my symptoms, it still took a long time for them to be diagnosed as first dissociative identity disorder and PTSD and later borderline personality disorder. Borderline personality disorder shares a ton of symptoms with complex PTSD and I think that’s what I have.

I have never been in formal trauma therapy. The reason is that, first, it was hard to find a therapist with expertise on DID. Once I’d found one, my diagnosis had been changed and I was assumed to be making it up.

As a result, I’ve done most healing on my own. I got the book Coping with Trauma-Related Dissociation as soon as it came out in 2011. I worked through some of it on my own, but that wasn’t helping much. Talking a lot about my experiences was.

After I’d been talking through my experiences for a long while with my resocialization unit staff, my classic PTSD symptoms started to fade. Unfortunately, they’ve been back to an extent lately. However, my emotion regulation issues are a lot less pronounced.

I still have dissociative symptoms. Accepting them and validating my alters has helped me manage these symptoms.

Since I experience ongoing stress that reminds me of my trauma, I don’t expect to find the peace to fully heal anytime soon. However, I really hope I can continue to make progress.

Goals: Major Things I Hope to Achieve in Life #AtoZChallenge

Posted on by Astrid

Welcome to day seven in the A to Z Challenge. I’m finding that, even though ideas spin through my mind to blog about, I’m already less motivated to write and especially so for the #AtoZChallenge. Today’s post is a list, so I’m not sure it fits in with the theme of miscellaneous musings. I am feeling a bit uninspired though and lists are the easiest to write posts. I am sharing my major goals in life.

1. Find myself a satisfactory living situation. When I wrote a list of goals I had for myself on my old blog, buying a house was on it. Not that I’d ever be able to buy a house on my own, but divorcing my husband wasn’t on the list. This (buying a house) was however more my husband’s goal than mine. When I finally decided to try to get into long-term care, I felt much calmer than I did before. Even though the process is now going on for six months and counting, I’m still sure of myself on this part. This is the reason finding a satisfactory living situation tops my list.

2. Write my autobiography. I’ve wanted to be a writer ever since I was a young child. Of course, I am a writer with my blog and I also got a piece published in an anthology in 2015. I would love to publish more pieces, but I’d also love to write a memoir.

3. Find a hobby (other than blogging) that I can do independently. Or almost independently. I’m in a course now at day activities to explore this. We’ve been trying soap making for the last two weeks, because I used to enjoy that, and it’s going okay.

4. Visit the United States. I have a few long-time online friends from there whom I’d love to visit. I’d also love to visit carol anne of Therapy Bits in Ireland.

5. Heal from my childhood trauma. I hope to be able to someday access a qualified therapist able to treat me for my trauma-based symptoms. Even if I can’t do that, I hope to heal.

What are your major goals in life?

Frustration: A Vent Post About My Mac #AtoZChallenge

Posted on by Astrid

Welcome to day six in the #AtoZChallenge. Today, I’m not in the mood for deep discussions, so I won’t write about something too meaningful. Rather, just allow me to vent a little.

I am increasingly frustrated with my Mac. My iPhone is still useful, but the Mac is very hard to get used to. Yes, I’ve had it for over two months and am still in the getting-used-to phase. To be honest, I rarely use my Mac, because it’s so hard to work.

Particularly Safari, Apple’s default browser, is hard to use. Navigating web pages, particularly large ones, is a pain. I am not in the mood to explain it in English and had some trouble explaining it in Dutch to my husband too. Suffice it to say that the issue is because of VoiceOver, Apple’s built-in screen reader, so Chrome or other browsers give me the exact same trouble.

I have been doubting whether my choice to buy a Mac was right ever since I got it. I know I can’t get JAWS, the good but expensive screen reader, because health insurance is giving me a hard time on covering it. This was the main reason I got a Mac, since it has a built-in sc reen reader.

Now I know I could be idealizing my old Windows PC. It didn’t work well in the end either. Two keys were broken. My rather outdated version of JAWS was giving me increasing trouble with an increasing number of programs. I had NVDA, JAWS’s open source alternative, installed, but was struggling using just Braille. Now I can’t do that on my Mac either. I have to always have speech on. This is okay with me.

I was probably idealizing the Mac before I bought it and this may be one reason I’m disappointed now. I’m not sure it was wrong to buy it, but I’m not 100% sure it was the right choice either. Ideally, I would’ve tried Windows 10 with NVDA on my old PC first, but I didn’t. Then again, my old PC isn’t useful now because of the broken keys.

Today, as I was discussing my concerns with my husband, he offered me his laptop to try. I may have to buy a Windows license, but that’s okay. I don’t like it that I can’t make just one device work fully, but that’s probably the thing with accessibility.

Emotion Regulation Issues: Dealing with BPD Traits #AtoZChallenge

Posted on by Astrid

Welcome to day five in the #AtoZChallenge. When thinking of a topic for the letter E post, I was thinking of how popular yesterday’s post on depression had been and how it had helped destigmatize mental health. I thought of doing today’s post on another mental health topic. Emotion regulation disorder is the term sometimes used here in the Netherlands to describe a condition that’s still formally called borderline personality disorder. As BPD is neither borderline (bordering on what?) nor a personality disorder (in that there is very effective treatment for it), I think this is appropriate. Besides, emotion regulation disorder is a lot less stigmatizing of a word.

My husband asked me, after hearing what my first four posts had been about, whether I’d be making my letter E post about something positive. I said “No”, as mental illness isn’t generally seen as a positive thing. Indeed, I’m still feeling pretty depressed and this may be why I chose this topic. However, the stigma associated with mental illness can still be worse than the illness itself. If I can help remove a bit of that with this post, I’m happy.

I was diagnosed with borderline personality disorder in 2013. I didn’t like it. This diagnosis replaced two other conditions I’m pretty sure I do have as well, namely dissociative identity disorder (DID) and PTSD. I was told that BPD is a trauma-based condition too and that dissociation really runs on a spectrum from BPD to DID. This is true, but I still wasn’t happy about the diagnosis. I had a lot of internalized stigma about it. This wasn’t helped by my therapist, who pretty much assumed my BPD was causing me to make up the DID. Well, I’m not making it up.

My husband didn’t believe I could possibly have BPD. After all, borderlines are known for unstable relationships and he had been my first boyfriend. Then again, there are nine different criteria to BPD and one only has to meet five of them to qualify for a diagnosis. Symptoms I most definitely do have include an unstable self-image, dissociation and stress-related paranoia, fear of abandonment and self-harming and suicidal tendencies. I can also have bad anger issues and react impulsively. In fact, the only criterion I’m pretty sure of I don’t meet, is the one about unstable relationships. People who do meet this criterion, often engage in what is called “splitting” within the BPD community. They alternate heavily between idealizing and devaluing their favorite person (who can be a partner, but can also be a family member or even a therapist).

In 2016, my diagnosis was downgraded from full-fledged BPD to just BPD traits. I’m pretty sure I’d still meet the full criteria, though not as strongly as before maybe. It is common for BPD symptoms to lessen as a sufferer gets older.

I prefer to refer to my BPD traits as emotion regulation issues, like I said. Not only does this sound less stigmatizing, but it feels more true to what I experience. I do experience, after all, very strong emotional outbursts. These can be of anger, but more recently also sadness or fear. I also find it hard to distinguish emotions and tend to express every strong emotion as anger.

Like I said, BPD, unlike other personality disorders, is treatable. The most evidence-based treatment is dialectical behavior therapy (DBT). DBT combines cognitive behavioral strategies with mindfulness. I tried it last year, but was finding it hard to pay attention in therapy and carry over what I learned from the manual into real life. I do however still try to apply the skills.

Depression: What It Feels Like #AtoZChallenge

Posted on by Astrid

Welcome to day four in the #AtoZChallenge. Today I am once again struggling to find the motivation to write. I also didn’t think up a topic for today until just now. Today’s topic is depression. Most people will have some basic knowledge of it, so this isn’t going to be a primarily informative post. Rather, I am sharing what depression feels like to me.

From age seven or eight on, I experienced depression. However, in my case, its main manifestation wasn’t sadness. I wasn’t crying all day. In fact, I rarely cry unless I’ve had a meltdown. Rather, my main manifestation was irritability. This is common in children and adolescents.

However, because my most obvious mental health symptom continued to be irritability into adulthood, I wasn’t diagnosed with depression until age 30. I had some assessments for it when in my twenties, but always checked off just a little too few boxes.

When I got diagnosed with depression in 2017, I first had a screening tool administered. This tool covered some of the more atypical symptoms of depression, such as feeling like a weight is on your body, gastrointestinal symptoms, etc.

Depression to me feels like a constant heaviness on my body. I can literally feel it weighing down on my shoulders.

Another important aspect of depression is feeling low. When I was first assessed for depression in 2007, I didn’t know what the feeling of depression meant, so the psychiatrist clarified it by asking if I’m sad. The thing is though, sadness and depression are very different. Though some people with depression cry all day, most don’t feel particularly sad. It also isn’t a situational thing, as sadness often is.

Another thing about depression is that most sufferers have trouble sleeping, eating and maintaining weight, resulting in weight loss. However, in my case, I sleep too much, eat too much and gain weight.

Suicidal thoughts are also a part of depression, but most severely depressed people are too lethargic to actually be actively suicidal. When I have vivid thoughts of ending my life, I can tell it’s usually more situational and due to emotion regulaiton issues. When I’m “just” depressed, the thought of ending my life is a constant lingering presence at the back of my mind.

Lastly, a common symptom of depression is psychomotor agitation or retardation. This means people get slower or conversely more restless. I tend to experience a mixture of both, but usually when I’m purely depressed, slowness is the overriding symptom.

#IWSG: The Ebb and Flow of My Writing

Posted on by Astrid
IWSG

This is going to be a quick post, as it’s already 9PM and I’m off to bed soon. I have to check in with the #IWSG community though. I did plan on writing, but then my time and energy got taken up by the A to Z Challenge. I don’t know how the other writers who participate in both, do it.

I wanted to touch on something I’ve discovered regarding my motivation for writing. At the beginning of each month, it’s usually much higher than at the end. Readers of my blog can see this by the number of blog posts I write per week.

I have yet to figure out what is causing this decline in motivation. Or is it inspiration? I don’t know. There are enough prompts and ideas to choose from to write about for each day of the month.

I noticed also that, when I started this blog, I had a lot more inspiration and motivation than I did after even a month. It can’t be because I touched on every topic I wanted to cover already, as I didn’t. But why then is it so? I am not going to answer this question right here, but this is something I need to think on in the coming month.

In contrast to this, I do manage to write something almost everyday. It just isn’t always blog-worthy. Or I think it isn’t. Which is strange, since, when starting this blog, I didn’t give blog-worthiness a thought. Well, now apparently I do.

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

Posted on by Astrid

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.