Monthly Archives: February 2016

By This Time in Life…

Last week, the Finish the Sentence Friday prompt was: “I thought that by this time in life, I’d…” I discovered it on Thursday already but was busy all week-end traveling to my parents, being at their house and attending a concert and then traveling back. I can’t link up my post anymore, but that doesn’t keep me from writing about the topic.

I have written many posts about my dreams for my adult life. When I was a young teen, I dreamt that by the time I turned thirty, I’d have completed my Master’s degree, gotten a steady job as a high school teacher and become a Mom of three (technically four, because in my dreams one pregnancy would always be with twins). Obviously, this was before the economic meltdown, because I dreamt of being a teacher within a year of earning my Master’s degree. Interestingly, though obviously these three or four children had a Dad, I never imagined meeting the man of my dreams.

Obviously, these dreams were unrealistic, though I held onto some version of them till I landed in a psychiatric crisis and had to be hospitalized. It is once again strange that, even though I met my now husband before being hospitalized, I just thought I’d meet someone “someday” and was busier with thinking up my career than thinking up relationships.

Later on, I adjusted to the idea that I would never be a high school teacher, speech-language pathologist, or anything earning me money. I did enter a relationship and get married. Still, I had and to some degree still have a hard time fitting in that one success into my life story. I love my husband and am hopefully going to live with him this summer. Still, once I landed in a psychiatric crisis, I abandoned all my dreams and replaced them with the idea that I’d be in residential care for the rest of my life.

I seriously need to let go of this idea that, if my dreams of a college degree, a job and a child or four can’t come true, I can’t get any sort of meaningful life. Maybe I can’t have the life I imagined for myself. Maybe I won’t ever live in the United States – because that was another dream of mine. I can however have a life with my husband and our two cats in our nice home in the tiny village here in the Netherlands. I really need to work towards that goal.

Medical #WotW

It’s been a tough week, so I haven’t written much. I’ve had countless plans and ideas in my mind, among which restarting my Dutch blog (yes, again!), but my brain and body won’t fully cooperate. I did restart the Dutch blog, but I only republished an old post. Because I can’t really get my mind to work towards creating an original blog post, I’m just going with #WotW and share my word for the week. I’m a bit late, but I checked and the linky is still open.

My word of the week, not quite surprisingly, is: medical. I’ve had quite the week with medical visits, after all. On Monday, I had to be screened by an endoscopy nurse in preparation for the upper GI endoscopy, which was Friday. The screening was relatively easy-going. The only hurdle was that the nurse hadn’t gotten a referral letter, so he had no idea why I was supposed to get an endoscopy. I explained that i had heartburn and pain up my esophagus. “Ah, you have reflux.” I happen to know the term in English but had hardly heard of it in Dutch and thought it’s the same as heartburn. I got the idea that the nurse felt the endoscopy wasn’t necessary, but he didn’t say so. Not that it’s his job to decide on such matters anyway. The nurse did say that my being short of breath while lying down but not (too badly) during slight exertion could be due to the reflux.

On Friday I got the actual procedure. It was a breeze too. A nurse from the institution came with me since my husband was at work. She wasn’t allowed in the room when I got the endoscopy but that wasn’t a big problem. I was sedated under twilight anesthesia, where you’re conscious but not quite aware of what happens. I can’t remember a thing about the procedure itself, though I do remember being brought to recovery. In the bed next to me was a man who got the news that he might have cancer. That gave me a bit of anxiety, because I still wasn’t so sure nothing would be found on my endoscopy. As it turned out, the doctor was finished telling me the results within less than half a minute. Nothing was found and he’d send a letter to my GP. I’m glad that nothing was found, although it would’ve been better if something with an easy, targeted treatment had been found.

On Tuesday, I went to my GP again because I’ve been having terrible fatigue and what I have gotten to believe is some sort of brain fog. I didn’t mention the term brain fog but did describe what it’s like. The doctor sent me for bloodwork and is going to give me a physical examination next week. Even though I’ve been a little less exhausted over the past few days, I do hope something easily treatable will be found. As the doctor explained, fatigue usually has more than one cause. It could be I’m having some case of the winter blues, because I’ve been feeling more depressed lately too. Fatigue for me gets better and then worse but it’s never fully gone though. I have had vitamin and iron deficiencies in the past, so we’lll see whether these are acting up again.

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Victim to Survivor to Thriver

Last week, one of the Friday Reflections prompts was about being a victim or a survivor. I didn’t have time to write about it then, so I will write about the topic now. I’m pretty fatigued and quite emotional today, so I hope my words make sense.

About ten years ago, I wrote on a mailing list for former preemies asking whether those born prematurely are survivors in the way that abuse survivors are. I mean, literally speaking of course we are survivors, because we survived against all odds. I was at the time still in a very early stage of figuring out my childhood and why I have always felt like a lot of my experiences were traumatic. I was beginning to discover the fact that I dissociate and learning about attachment and its dfficulties. The group owner, herself also a trauma survivor, replied that to survive means to endure hardship, so that in this sense, of course preemies – and most people with disabilities – are survivors.

As a child, I considered myself a victim of many of the experiences I endured. They were still happening, so how could I see myself as a survivor? In the same way, I can now see myself as a victim of mental illness. I don’t, of course, because no-one inflicted my mental illness on me and, besides, I don’t consider my craziness an altogether bad thing. It sucks sometimes, of course – well, most of the time it sucks. My point in saying I could now consider myself a victim of mental illness, is that it’s not over yet – I haven’t survived it as it’s ongoing.

I did survive my childhood trauma and do consider myself a survivor. Being a survivor does not mean having completely healed from your experiences, but it means having come out the other side alive literally and figuratively.

When describing the recovery process for people who endured trauma, we generally use three steps so to speak: victim, survivor and thriver. A victim is still in the midst of an experience. For instance, someone enduring domestic violence who hasn’t left the relationship yet, can be considered a victim. A survivor has escaped the direct effects of the trauma but is stil suffering from post-traumatic symptoms. A thriver has moved beyond their trauma and is living as healthy as possible a life.

The steps are not rigidly divided. For example, if a domestic abuse survivor has left their abuser but has not gone “no contact”, they can be both a victim and a survivor. Thrivership is also a continuum, where some people have no post-traumatic symptoms at all anymore and others can manage in spite of them. I will most likely always have borderline personalty disorder, which is in a way a post-traumatic condition. However, I want to someday have a meaningful life in spite of it.

When I Look in the Mirror…: Blindness and Body Image

Today, Finish the Sentence Friday’s starter sentence is: “When I look in the mirror, I see…”. Now I could easily respond that I’m blind so I don’t see anything in the mirror. That would however be feeding a common misconception, that is, that blind people don’t have body image issues because they can’t see what they look like in the mirror. Some people even go so far as to assume blind people can’t have eating disorders for this reason. First of all, of course, not all eating disorders are about body image. However, let me tell you, I know several blind people with anorexia, which is in part about body image.

The relationship between my blindness and my body image is however quite complicated. I can’t say there is no relationship, because there is. For example, I gained over 40lbs in the last four years. I know this because people tell me the number on the scale. However, I haven’t tried this but I’m pretty sure that if I had to estimate my size, I would be far off and see myself as far thinner than I am. I do obviously feel my body and I use my hands to measure it. That’s gotten harder as I’ve become bigger, but I don’t notice it as much as someone would by looking in the mirror. I don’t exactly see myself as skinny, in that I know I’m quite fat, but I do often have a hard time reconciling the numbers on the scale with how I feel like I look.

This may seem weird, because I do have a negative image of my body’s shape and size. I hate the fact that I’m fat. When I notice clothing getting tighter, I feel pretty awful about myself. I’ve said that I should weigh half as much as I do now (which would put me in the underweight range). That being said, I play these mind tricks where I allow myself to gain weight despite wanting to lose it. Like, I’ve gotten this insane kind of logic where I’m at a good weight if halving it would put me in the anorexic range. I got it from a Dutch book called something like “How I halved myself and won the battle against anorexia again”.

There are other aspects to body image of course. People who estimate my age by looking at my face, usually think I’m quite a bit older than I am. I can feel the tiny wrinkles on my face, of course, if I really attend to them. That in turn makes them feel a lot larger than my husband says they are – he actually says I don’t have wrinkles at all. However, again, in my mind I still see myself as looking like a teenager.

The last time I had some vision of what I looked like, I was about thirteen. In this light, it makes sense that I am stuck on the image of myself as a teenager. It’s not just my body image though. I still see myself as somewhat like a teenager in many ways. That could be my autistic difficulty adjusting to change applied to myself.

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Willpower

I am a member of a few general recovery groups on Facebook. Most of the members are addicts or alcoholics. I am not. I consider myself addicted to food in some ways, but it isn’t like I can just stop eating, like an addict can quit their substance of abuse. I’m not saying that’s easy either. That’s my point of this post.

Most recovery groups are based on some twelve-step model. As such, we see a lot of references to a higher power or God in the posts. One that I came across recently was that we have to redefine willpower. Willpower is the will to turn over the reigns of our life to God.

I like this statement. It doesn’t mean we don’t have to attempt abstinence (or in the case of an eating disorder, balance). We do still need to refrain from engaging in addictive behaviors. The difference is, God is guiding us on our journeys. If we turn over the reigns of our life to God, we are realizing that we need to follow His lead, not the road of addiction.

I am a person who often turns over the reigns of her life to other people. I allow others to make decisions for me and in some ways, I’d like them to make the decision that I can’t have binge food, too. Staff won’t do this, as I’m an adult and responsible for my own recovery. My husband sometimes gets me a small bag of candy when I’d intended on eating a far larger quantity. This may lessen the physical effects of a binge, but it still means I engage in compulsive eating.

The first step of Overeaters Anonymous is to say we’re powerless over food. (The same statement is used in Alcoholics Anonymous and Narcotics Anonymous, with “alcohol” or “drugs” instead of “food”.) Therefore, we need to find a power greater than ourselves to help us recover from our addiction. Note that this higher power doesn’t necessarily have to be God: for atheists and agnostics, it can be the OA group they participate in. This signifies that, while no-one is taking responsibility for another’s choices, it is the guidance of our higher power, be it God or the group, that leads us into recovery. Even as believers, we believe that we have free will, but we can still turn the reigns of our life over to God. If we do this, we learn to rely on Him for paving the way for us into recovery. It isn’t that we are no longer ourselves in recovery or not, but we rely on God for facilitating our process of recovery.

I am nowhere near recovering, as regular readers of this blog know. My last binge was last Friday, and I was tempted to give in again today. I didn’t, which is a small win, and my thoughts on willpower contributed to that. I realized that God doesn’t want me to binge, and He gives me the means to resist the urge. Today, I was led to write this post instead of binge. It may sound like I don’t practise what I preach, as someone who’s still pretty deep in her eating disorder, but it personally helps me to preach recovery.

Milestones in My Mental Health Recovery

This week #theprompt celebrates its 100th edition. I was guessing at the prompt for this week, as I often do, and this time, I was right: milestone. There are many milestones in one’s life. Birthdays, particularly important ones like eighteen or thirty. Graduations, be it from preschool, high school or college. Getting married, the birth of a child or grandchild, and the list goes on. When I thought of the word “milestone”, however, I thought of the milestones in my recovery from mental health problems. I am going to share them here. I include steps I’ve taken in my journey with autism here too.

1. Realizing I have a problem. In a way, I was always aware of my being different, but I didn’t realize there might be somethng really, clinically “wrong” with me till I was fifteen. Then I realized I may be autstic. Or something else. I quickly developed quite the obession with about half of the DSM-IV. Then, when I was seventeen, my parents talked me out of thinking I was autistic or otherwise anything other than blind and extremely intelligent and oh maybe a hypochondraic. Never mind that hypochondriasis is a real mental illness.

2. Admitting I need help. I first admitted this the day after I decided I might be autistic, so when I was still fifteen. Then again, I was too shy to tell my parents or my teacher or basically anyone that I really needed more than a teacher with a social skills checklist telling me all that I was lacking in terms of social skills. I remained too shy to directly ask for help for years. They were other people asking for help for me. First, it was the teachr with the social skills checklist calling the blindness rehabilitation center for me. Then it was my staff at independence training calling mental health services. Then it was the police calling the crisis service after I’d made a suicidal threat in public. I still have a problem asking for help directly.

3. Starting counseling. My first experience with counseling was at the blindness rehabilitation center I went to after high school. That wasn’t all that successful. Then, at the mental health agency where I was diagnosed with autism in 2007, I started sessions with a community psychiatric nurse. This was quite helpful. It was probably my most successful counseling experience so far.

4. Starting medication. I first started medication in the summer of 2007. That wasn’t a success. I hadn’t expected the psychiatrist I saw to suggest I go on an antipsychotic, because the nurse I mentioned above was suggesting a benzodiazepine on an as-needed basis. I did end up taking said antipsychotic, but stopped taking it again several months later. The second time I went on medication, another antipsychotic this time, I was extensively educated and got plenty of time to think it through and make a decision. I consciously decided I wanted this medication and it’s been a great help (with an antidepressant and several PRN meds added later on).

5. Checking myself into a mental hospital. Of course, it wasn’t literally that I checked myself in. I didn’t take the initiative to call the crisis service or my treatment provider, which I didn’t even have at the time. After all, I’d moved a few months prior and the new mental health agency was doing the diagnostic testing all over again. Nonetheless, I consider it a major milestone that I agreed to be admitted into the psychiatric hospital.

6. Moving to a resocialization unit. I spent sixteen months on a locked unit, largely because my meltdowns and emotional outbursts were too severe for any less restrictive unit to want me. Finally, however, the resocialization unit did want me after I half lied myself into being accepted. I think this was a major step, as I got much better care on the resocalization unit than on the locked unit. After spending over four years there, I moved to my current unit, which is also rehabilitaiton-oriented but doesn’t have as strict guidelines on how long you can be here. Not that they were followed by the other unit either. I really went here to be closer to my husband, whicch I currently am not anymore since the move, but oh well.

7. Discharge. This milestone is to come this summer. I’m going to move out of the psychiatric instituttion and live with my husband. I’ll continue to get some form of psychiatric treatment, but of course this is a step towards recovery of a “normal” life.

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Compensatory Narcissism

A few weeks ago, I was reading Believarexic by J.J. Johnson. Yes, I know I reviewed it already. I didn’t talk about one of the themes in it though, which is competitiveness, perfectionism, narcissism and how these are interrelated. As I just came across a journaling prompt on comparing yourself, I wanted to discuss this now.

I am not a perfectionist. At least, not a successful one. I make a lot of careless mistakes. I also used to send out cards and crafts for swaps that were mediocre at best and worse than a five-year-old could’ve done them at worst. In other words, I am not one to go to great lengths in order to achieve perfection. Of course, my disordered eating is also an example of this. If I attempt to keep control at all, I fail miserably at it. A psychologist who evaluated me when I was eleven, wrote in her report that I lacked self-criticism, in fact.

That being said, I do recognize what Dr. Prakash told Jennifer in the book about being on the head of a pin. If you’re on the head of a pin, you see yourself as great, expect yourself to be great, but once you fail, you hate yourself. I do expect myself to excel or I give up. In this sense, I’ve fallen off my own (and others’) head of a pin so many times that I may look like I don’t care about it anymore. But I do.

I may not show it, but deep down, I’m very sensitive to criticism. Like, I like to think of my English as great, but I definitely know that my pronunciation is an exception to this (and my written English isn’t excelletn either) My husband sometimes jokes, asking “What language is that?” when I speak English. His spoken English isn’t perfect – I’ve never seen his written English -, but it’s better than mine, so I don’t correct him or laugh about it. That being said, knowing that my spoken English is pretty bad, I hardly ever try to use it, so I don’t improve on it. I’d rather stay on my head of a pin and get people I meet online to compliment me on my (written) English.

In some areas, I am competitive and know that I will never win. Like with blogging. I am an okay’ish blogger, but I’ll never be a great blogger, no matter how hard I try. I feel deep down that this is a major weakness of mine, but I blame it on external factors (here comes the lack of self-criticism), or at least uncontrolable ones. For example, I tend to reason that I could be a great blogger if I could use images, which I can’t because I’m blind.

I once read about this type of narcissism called compensatory narcissism. It isn’t an official mental health diagnosis, of course. However, it shows that people with narcissistic traits commonly have low self-esteem. That’s what Dr. Prakash told Jennifer in Believarexic too: that loving yourself too much and hating yourself are sometimes pretty close. Like I said, compensatory narcissism isn’t a formal diagnosis, so I can safely say I fit a lot of the proposed criteria without looking like a hypochondriac, can’t I?

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