Ways to Take Better Care of My Body #Write31Days

Welcome to day 14 in #Write31Days. Last week, I wrote a post on the topic of what my body is telling me. Today, I’m writing on a similar theme. The prompt from The Self Exploration Journal I’m using today supposes that your body is a temple. How could you better take care of it?

There are many ways in which I could take better care of my body. I’m already doing a lot better though than I used to. Like, until I was eighteen, I wouldn’t touch toothpaste and would brush my teeth with just water. Then, I went to the dentist to find out I had seven cavities. Filling them (without anesthetic) was horrible. From that point on, I started using toothpaste, buut I still had trouble sticking to a regular teeth-brushing routine. I struggled with this for many years to come and have only recently been able to consistently brush my teeth twice a day. I’m still not doing it very well, but I’m getting better.

Another way to take better care of my body is by getting off my behind. As a child, I was fairly active, but my activity level declined sharply in my teens. I got a computer, which meant hours upon hours of screen time. At this point, I’m still pretty sedentary, although I love walking. Since I cannot leave the house on my own, I need to think of ideas to fit in more activity at home. I already go on the elliptical regularly, but I’m thinking I could be dancing too.

Sleep is another aspect of body care that I’ve improved in. As a child and teen, I’d get no more than five to six hours of sleep a night. Now, I make sure that on week days, I get eight to nine hours of sleep. On week-ends, I get much more. That probably means that I’m still not fully rested from those eight to nine hours on week days, but I do’t know how to fit in even more sleep.

An aspect of body care in which I really need to pick up the pieces again, is food. I am doing better than I was when in the institution, when I’d binge on candy twice to three times a week. However, I’m still snacking a lot more than I should.

In what ways could you take better care of your body?

The Greatest Life Lesson #Write31Days

Welcome to day eleven in #Write31Days. Today, I picked a prompt from 100 Self-Help Journal Prompts by Francie Brunswick. It asks us about the greatest lesson we’ve learned in life and what makes this lesson so important.

Here I’m going to be a bit repetitive, as I covered this topic already in my letter to my younger self. The greatest lesson I’ve learend in life is that you need to stay true to yourself.

I have some codependent tendencies. In other words, I tend to be a people-pleaser. For years, I thought that to make up for the burden that I was due to my blindness and other disabilities, I’d need to let other people make everyday decisions for me. In that sense, at age seventeen or eighteen, I definitely would’ve met the criteria for dependent personality disorder. Not because I wanted others to do stuff for me or because I claimed support I didn’t really need, but rather because I allowed others to take responsibility for my life. Conversely though, practically, I thought I had to be extremely independent, never asking for help, for fear of losing other people’s approval.

Until my mental crisis of 2007, I let my parents rule my life. That may be normal’ish for someone at that age, but it wasn’t healthy. Then when I went into the mental hospital, I let my social worker make decisions for me. She was a very authoritarian person, threatening me with forced discharge from the hospital or guardianship if I didn’t do as she wanted.

Then, of course, I let my psyhcologist on the long-term care unit make decisions for me. Ironically, when she diagnosed me with dependent personality disorder in 2016, she used as one of the reasons the fact that I wouldn’t openly disagree with her. I told her half-jokingly that I assumed she’d remove my diangosis again if I fought her hard enough on it. She wouldn’t. Her diagnosing me as dependent was based on her screwed beliefs about disability and mental health.

I am now 32. I have the most supportive care team I could wish for. However, if I ever get to deal with less supportive staff in my life again, I know I can and must stick up for myself. I cherish Leonie, my fights-like-a-lioness insider, who emerged when I most needed her, when fighting my psychologist on the DPD diagnosis. I have a right to be myself. I am not dependent on anyone for making my decisions.

A Letter to My Younger Self #Write31Days

Welcome to day nine in my #Write31Days series on personal growth. Today, I chose yet another prompt from The Self-Exploration Journal. It asks what one piece of advice you would give your younger self if you could go back in time. Ths question couldn’t be more timely, as I’m facing a lot of regrets from the past right now as I face the decision to apply for long-term care. I am spinnning this questioon around a little and going to write a letter to my younger self. I don’t have an idea for the age of this younger self, but the piece of advice should be the same anyway.

Dear Younger Self,

This is your 32-year-old self writing. I want to reassure you that I see you. I see your struggles for autonomy, for self-determination. And yet, I see your struggles with your limitations. You have yet to come to terms with the fact that you’re multiply-disabled.

I see that peope try to control you. Your parents consider you worth parenting only so long as you prove that you’re going to give back by contributing to society. Your support staff try to please your parents, sending you out to live on your own despite knowing this isn’t in your best interest. Your psychologist in Nijmegen, no matter how helpful she is in some respects, still doesn’t provide you with the opportunity to go into the right type of care. She, like eveyrone before her, values your intelligence over your need for support. Your psychologist in Wolfheze blames you. She robs you off your last bit of self-determination by kicking you out of the institution without proper after care.

I want to reassure you. I see your needs. I’m fighting for them to be met. I don’t have enough support yet, but I have people around me who are fighting for it with me. I can’t promise you that you will ultimately get into long-term care, as that’s up to the funding agency to decide. I can however assure you that I’m fighting for you.

If there’s one piece of advice I could give you, it’s to fight for yourself. No-one can live your life but you. You don’t owe your parents anything. You’re past that point. Care staff do only their job. This isn’t to discount the good work my current care staff do, but it’s just that, work. They will eventually fade out of our life. Even your husband, the only person who will most likely stick by you for a long time to come, doesn’t have the right to control you. I know you want to please him, because you love him, but that is different. Pleasing your husband is founded on love, not authority, and it is mutual. Even so, your husband does not live your life. Ultimately, the only person who will live the entirety of your life with you, is you.

I don’t mean this to criticize you at all. I see how hard it is for you to stand up to controling people. But you’ll learn to do so in time.

With love,

Astrid

What one piece of advice would you give your younger self?

What Emotions Drive Me to Bad Habits? #Write31Days

Welcome to day eight in #Write31Days. Today’s post, like last week Monday’s, is yet again focused on emotions. I took another prompt from The Self-Exploration Journal. It asks what emotions drive me to bad habits.

I have a few self-destructive habits, some of which I engage more regularly in than others. For example, I overeat on average at least once a week, but only self-injure by cutting occasionally. Then there are these little habits that I engage in so often that I barely even notice them anymore, such as nail-biting or most recently teeth-grinding. Just a few minutes ago, my husband asked me to stop grinding my teeth.

Basically, I can be pretty sure that the type of emotional state that drives me to engage in all of these bad habits is stress. Stress is usually thought of as a type of anxiety, but it is not necessarily fear that drives it.

I tend mostly to engage in the little bad habits, like nail-biting or teeth-grinding, when not feeling much of a clear emotion at all. Rather, I tend to be in a state of worry, thinking in circles.

When emotions do reach the point where I notice them, they are pretty close to boiling point already. When this happens I may engage in self-harm behaviors or overeat.

When I look closely at what emotion causes me to engage in these self-destructive behaviors, I see that it is usually a sense of loneliness. Loneliness is not an emotion or so I’m told. At least it isn’t a primary emotion. Sadness is and that’s often what’s underneath this sense of loneliness.

Anger can also drive me to engage in self-destructive habits. Usually though, I am angry at something too minor to matter. The emotion underlying this anger is once again sadness.

What emotions drive you to bad habits?

What Is My Body Telling Me? #Write31Days

Welcome to day seven in #Write31Days. Man, I’m getting tired of this challenge, as it doesn’t look like any of my readers care for it. However, I try to remember what the challenge organizer said, that this isn’t about gaining followers. It is instead a writing challenge to get you writing every single day.

Today I picked yet another prompt from The Self-Exploration Journal. It is: “What is your body telling you?”

I find this a really hard question to answer. I don’t focus on my bodily sensations much, yet when I do, they tend to overwhelm me. I regularly have a meltdown because I simply need to use the toilet. Usually this happens when I am not in a position to find the bathroom independently and the need-to-use-the-toilet sensation has robbed me of my speech. I also commonly have meltdowns because of hunger, pain or being cold.

As I focus on my body, I notice how my mouth hurts from having burned it on a hot snack I just ate. I notice my nose is a little runny.

I have distressing pain in my neck and shoulder muscles. It’s not as bad as it was yesterday, but still bad enough to distract me as I type this post. Good thing that this post is focused on my body.

If I have to guess what my body is telling me with these sensations, it’s probably to take a step back. I was impatient with my snack, thinking I’d need time to write this blog post too so I’d better eat my snack fast.

I’m not sure what the neck and shoulder pain are from. My husband says it’s most likely stress, but is that from doing too much or giving in too easily?

I know about the spoon theory, which describes the limited energy levels of people with chronic conditions. My support worker, who works mostly with people with acquired brain injury, reminded me of it on Monday. This morning, I was quite tired from the mere acts of showering and getting dressed. Yet I still can’t shake that little voice that says that, before I had support, I did these things too and never complained.

So my body tells me to take a break. Now I need to decide whether to listen or overpower its noise with my own and go on.

My Biggest Emotional Strength #Write31Days

Welcome to day one in my 31 Days of Writing for Growth. For this first post, I took a prompt from the Journaling with Lisa Shea series. Specifically, I chose the day 1 prompt in the book on journaling for self-esteem. In this prompt, Lisa asks us to reflect on our greatest emotional strength. It could be courage in the presence of spiders, being able to stay calm in a crisis, etc.

This is a really tough one. I don’t pride myself on my emotional strengths that much, after all. People also may not agree with what I’m going to say here. I think myself that my biggest emotinal strength is the ability to bounce back from adversity.

Many people would disagree with this. They’d say that I give up easily in the face of frustration. In a way, they would be right. I do not pride myself on my frustration tolerance. In fact, when even a tiny thing goes against the way I’d planned it, I can fall off my rocker easily.

What I said, however, is not that I push through when faced with adversity, but that I do fall and yet I get back up. Some people would disagree even here. After all, if I’d truly gotten back up after my crisis of 2007, wouldn’t I have gone back to university or found myself a job by now? I certainly wouldn’t have spent 9 1/2 years in a mental institution, right? And yet I did.

Maybe I need to reword myself. I don’t have that much of an ability to regroup after a crisis. But I do have quite an ability to pick up the pieces, even though what I create with those pieces of my life may not be what. my life was like before

For years, I did exactly what my parents and teachers had decidied for me that I should do. It took a crisis for me to step back from that state of codependency and to follow my own path. I didn’t give up – not completely. If I had, I wouldn’t have been able to write this post. Instead, I used the opportunity to gain insight and inspiratioon to bounce back and move on with my life.

Seven Things I Wish My Unsupportive Parents Understood About Me

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.

Leaving the Path Paved for Me

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regardign going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.

Preverbal Trauma

Today, I wrote in a Facebook group about preverbal trauma. I know for a fact that I endured a lot that could have caused PTSD from birth on. I was born prematurely, spent the first three months of my life in hospital and was hospitalized several more times before the age of five.

About seven or eight years ago, I started experiencing body memories that I immediately associated with a medical emergency that I endured at age four. At the time, my trachea closed up and I as a result had difficulty breathing. I never completely repressed that memory, always knew that it’s something that actually did happen.

So I wonder if I made said association because it makes more sense than connecting the body memory to preverbal trauma. I mean, preverbal trauma is very controversial, because people do not form that clear memories until the age of three. That doesn’t mean people cannot be affected by preverbal trauma. It just means the memory is hard to recover.

I have alters. About six years ago, an alter emerged that is constantly curled up in a fetal position. We don’t know more about her. A seven-year-old alter who also emerged around that same time talks about that alter as a baby in the incubator. Now of course babies in incubators are not in the fetal position, so yeah.

Still, it all makes me wonder whether I’m making all this trauma stuff up. I mean, yes, I was born prematurely. Yes, I spent three months in hospital and had repeated re-admissions before the age of five. But my parents say that until age seven, I was completely fine and carefree. I mean, it’s not like everyone who endured trauma develops PTSD. So could it be I’m just making this whole preverbal trauma thing up?

In a preemie parent support group, I asked whether anyone has experience with their child getting EMDR for medical trauma. I have always wondered whether EMDR could help me. It was recommended when I had just been diagnosed with dissociative identity disorder in 2010. Then I heard it’s not recommended unless you’re very stable otherwise. Well, the consultant I talked with on Monday said that’s no longer the case. So maybe I could benefit from it. Several parents responded about reading their child a “life story” about their birth and hospital stay while the psychologist did the EMDR. Since my parents aren’t very supportive, I cannot ask them to help me with this, but I could create my own life story based on what my alers tell me.

Embracing My Neuroses

A lot has been on my mind lately, but for whatever reason, I can’t get it out onto the screen. As such, I keep reverting back to standard, mundane blogging features such as #TToT and the like. I don’t mean these aren’t important to me and they are among my most popular posts, but I intended this blog for myself, not (primarily) for my readers. Of course, now that my blog is off to a start, I do worry about my stats.

As I was browsing Paperblanks, a journal writing prompts app on my iPhone, I came across an interesting prompt in this respect. It is: “This year, I’ll learn to embrace my neuroses, such as ___”.

Embracing neurosis. That seems like quite a counterproductive thing to do, as neurosis often is seen as something negative, something we need to overcome. Then again, in dialectical behavior therapy (I think), it is said that you cann’t change something without accepting it.

This year, I will learn to embrace my neuroses. I will learn to accept them as they are and move on from there. I have several neuroses that I need to embrace.

My main neurosis is my heighteneed response to being triggered or criticized. Pete Walker calls this the fight-flight-freeze-fawn response. I tend to lean towards fight. As such, I tend to perceive an outer critic as more severe than it is intended as due to my own inner critic chiming in. I am to an extent aware of it, but not usually when it happens. By practising mindfulness, I hope to become more aware of this response.

I also want to embrace my freeze response of retreating into my inner world. I am often judgmental of myself and my alters when not online, but this doesn’t seem to do us well. I am going to learn to validate myselves.

I have a lot of little “neuroses” that I’ll want to embrace and not change much at all. These include my stims, such as twirling my hair. I will write more about stimming on the upcoming International Day of the Stim.

What is a neurosis you need to embrace?