Love to Perseverate: Rare Diseases

This week at the spin cycle, we share something we love that everyone else seems to hate or something we hate that everyone seems to love. When it comes to interests and hobbies, my famiy is quite diverse. I, like my mother, am into crafting and reading. Like my father and possibly my husband, I like learning all kinds of new things from Wikipedia or the university library. I, however, am the only one who is interested in psychology and particularly psychiatry. It could be because I’m a nut case myself, though I also love learning about other fields of medicine.

It is not a terribly uncommon interest, but it just sounds weird saying you’re interested in rare diseases. Like, I can’t bring myself to like pages on Facebook on diseases that aren’t at least remotely related to my own conditions, just in case my family believes I’ve decided I have Zellweger Syndrome. For your information: this is a debilitating genetic syndrome from which affected children die early on.

Many people do read inspirational books by people who’ve overcome tragedies, including rare diseases. Brain on Fire by Susannah Cahalan, which I just finished, was a bestseller in the United States and possibly in the Netherlands too. I read the Dutch translation, because my BookShare account has still not been activated (still waiting on my doctor to write the proof of disability thing) and I didn’t want to buy the eBook when the Dutch audio book is available at the library for the blind for free. Anyway, while many people read the book, I’m sure most people didn’t remember every tiny detail on Cahalan’s condition, except for those who think they or their relative might have the same disease. And just so you know, Cahalan does link her condition, anti-NMDA receptor encephalitis, to some diagnoses of regressive autism, but I have no reason to believe I have this condition.

In Brain on Fire, Susannah Cahalan, a reporter at the New York Post, describes the process of her sliding down into madness. For a month during the spring of 2009, for which she herself has no memory, she has seizures and psychotic symptoms and finally becomes catatonic, hardly able to move or talk. Because her parents insist that she be hospitalized on a neurological unit, she is admitted to NYU Medical Center. There, neurologists and psychiatrists are completely baffled as to what is wrong with her. One diagnoses post-ictal psychosis (psychosis after an epileptic seizure), the next diagnoses schizoaffective disorder, and so on. Finally, Dr. Souhel Najjar joins Cahalan’s team after her previous neurologist gives up on her. Najjar thoroughly examines Cahalan and finds, when he asks her to draw a clock, that she places all the digits on the right side of the clock. This causes Najjar to realize that in fact Cahalan’s right brain hemisphere is seriously damaged. It isn’t saidhow he realizes that, in fact, her brain is on fire, being attacked by her own body. It also isn’t too clear what ultimately leads to the diagnosis, because Cahalan gets a brain biopsy but she later writes that only a small portion of people with anti-NMDA receptor encephalitis get brain biopsies.

The NMDA receptor, Wikipedia tells me, is a specific type of receptor for glutamate (a very important neurotransmitter). It is important in learning and memory. When antibodies attack this receptor, the disease Cahalan suffered occurs. Some people experience flu-like symptoms or headaches weeks or months prior to onset of the characteristic symptoms. Usually, the disease starts with behavior changes, which may vary depending on the patient’s age. Children may show violence and increased agitation, while adults may experience psychotic symptoms. As the disease progresses, symptoms may include paralysis of one side of the body, jerky movements (ataxia), autonomic dysfunction (problems with heart rate or blood pressure), or catatonia. These symptoms require urgent medical attention, because the patient may slip into a coma and die.

The book is much more intriguing than my boring summary of Cahalan’s disease. I just love perseverating on rare diseases, like I said, and this is the perfect opportunity.

What Blogging Has Taught Me About Myself

The first writing prompt for August on the SITS Girls website is to write about what blogging has taught you about yourself. I have been blogging for years. I started an online diayr in 2002 and kept one on about every diary site that was around. In 2007, I transferred my DiaryLand diary, which had become partly a blog, to WordPress and started a real blog. My old blog died from inactivity in like 2011 and I had some blogs on and off for a few months until I started this one in August of 2013.

Blogging has taught me many things. It’s helped me improve my English and writing skills in general, and it’s helped me develop online connections and even a few friendships. Maybe it’s even helped me meet my husband, because he was reading my blog when he decided I was an interesting girl to meet. When I think, however, of something it has taught me about myself, I have to be really honest and say I have learned that, deep down, I crave attention.

In a way, this truth should’ve been crystal clear to me by early secondary school, when I allowed new “friends” to read parts of my journals. These friendships usually didn’t last long, in part probably because I was way too clingy. But I yearned for real friendships at the time.

This continued in the age of the Internet, when I exchanged E-mails with some people I’d met on Yahoo! groups and we exchanged URLs of our online diaries. DiaryLand didn’t have a comment system for free users and I had no clue about stats, so there was no way of knowing whether anyone actually read my diary unless they told me so. At that time, I really wanted people to read my diary, but not so I was a successful writer. I wanted to communicate things I couldn’t communicate face-to-face. I didn’t care how many people read my diary, if those people I cared about did.

That changed when I got a real blog in 2007. Now on WordPress I had a comment system and stats, so I could actually view how many people were reading my writings. I was, at the time, quite a successful blogger in my niche of disability rights bloggers. I didn’t read the big lifestyle and Mommy bloggers, so I didn’t care or even know that I was only a tiny blogger in the bigger scheme of things.

When I started my current blog in 2013, however, I knew about the bigger blogging world. I don’t even know how I found out, but I learned about blog support groups on Facebook, writing prompts and link parties. I decided I wanted to spread my wings and reach out to the bigger blogging world. At first, I only wanted to teach them about disability issues and autism in particular, but of course other people’s stats stared at me.

In absolute numbers, I’m more successful a blogger now than I was with my old blog. However, now I know that you can be even more successful. I also know that there are essentials of blogging I will never master, such as including images. And the sad truth is, this makes me feel inadequate.

After all, I crave attention. There is some research my husband mentioned that asks people whether they want a car when everyone else gets a car or they want a scooter when everyone else gets a bike. Most people choose the scooter and I’m no exception. In this sense, it’s sad that I got to venture out into the larger blogging world of people with bigger cars than mine, so to speak, even though I now have a car too. If I’d stayed in my little disability rights niche, I’d have had the proverbial scooter but at least could’ve measured up to everyone else.

In this sense, there are two things blogging has taught me about myself. Firstly, indeed, I crave attention. I smile when I get a new comment even when it’s from a blog support group. But the second thing I learned about myself is, and I only realize this now that i write this post, I’m more competitive than I thought I was.

Prayer and Reflection: Jesus Helps Me Through My Eating Disorder

I have had quite the urge to engage in eating disorder behaviors today. It’s raining, so I can’t go out to the town store to get some candy. Besides, it’d not be right in the long run. After all, I’d not be caring for myself well by indulging in the urge to binge.

So I paged through Journaling in Eating Disorder Recovery. The book is explicitly Christian. Since I am a Jesus follower too, I have felt very much touched by the questions and suggestions in the book. At several points, the author encourages the reader to find Bible verses or other inspirational material that will help them through their recovery journey. So I looked online for some Bible verses that help me strengthen my willpower to overcome this urge, at least for now.

“For this reason he had to be made like them, fully human in every way, in order that he might become a merciful and faithful high priest in service to God, and that he might make atonement for the
sins of the people.┬áBecause he himself suffered when he was tempted, he is able to help those who are being tempted.” (Hebrews 2:17-18 NIV)

This is so powerful. Jesus was human himself, suffering all the usual temptations us humans face on a daily basis. Jesus did not have an eating disorder, but He was undoubtedly tempted to indulge overeating every once in a while. After all, everyone is tempted ot overeat at times. Yet Jesus overcame this temptation. We could say He did so because he is God, too. That would be disempowering ourselves, because we are saying: “I coud never resist temptation like Jesus did, because I’m not God.”

What this Bible verse says, however, is that Jesus is able to empathize with us and thereby help us. We may not have the Godly powers Jesus has, but we can lean on Him, and He will care. After all He knows what it is like to be fully human. He cannot just sympathize, but truly empathize.

As a mental health sufferer, I tend to look to people who have a lot in common with me for guidance and support. I look to people who have had the same experiences and struggles I face. I look to people who cannot just sympathize, but empathize.

How wonderful is it that God HImself, through His son Jesus Christ, can empathize with all of us! He knows what it is like to be tempted, so He is willing and able to help us through.

God, help me through the urge to binge for just one day. Help me face the reality that, in the long run, bingeing will be bad for my body, and I need to take good care of my body. Help me realize that, through your son Jesus Christ, who suffered human temptation, I am able to overcome this same temptation. Amen.

Everyone Can Be a Hero

One of the prompts for Friday Reflection this week is to write about someone who is a hero to me and why. I see a hero as someone who is very inspiring to me, whom I look up to. I discussed this with the institution pastor last year, when they did a summer series at church on inspiring people. He chose Mahatma Ghandi.

I see many people as inspiring. The most well-known person I mentioned to the pastor – but he’d never heard of her -, was Helen Keller. You’ve probably heard about her “miraculously” learning to use tactile sign language through the work of Anne Sullivan. Keller is also relatively well-known for having graduated college while being deafblind and a woman, both of which put her at a disadvantage in the patriarchal society of her time. However, you probably didn’t know that Helen Keller was a political activist, taking an important position in women’s suffrage and socialism. She was also one of the founders of the American Civil Liberties Union.

However, you don’t have to have overcome your disadvantages in some kind of miraculous way to be inspiring. In fact, most people only see Keller as having “overcome” her deafblindness and overlook her activism.

There are other disabled people I consider heroes. They however don’t do anything that makes them well-known and many have not “overcome” their disabiities at all. For example, I mentioned Cal Montgomery, author of Critic of the Dawn to my pastor. I don’t know her personally and she isn’t a public figure, so I cannot be sure that how I see her is correct. I do not know more about her than what I see through her writing. However, I can tell that she has determination. I do not admire her for having somehow proven her capacity to get out of an institution by denying her disabilities, which she may’ve had to do. Rather, I admire her for writing about human and civil rights for people judged to be too severely disabled to have these rights.

There are undoubtedly many other disability rights heroes in the world. Some are well-known in their particular disability communities. Others are not. What they have in common is not the “miracle” of their “overcoming” their disabilities, which Keller is publicly known for. Rather, they live their lives not just in spite of but also with their disabilities.

Living your life, in this sense, is a political statement. This applies particularly in the disability community, but it generally applies to everyone. People don’t need to be the first or the best or the greatest to be heroes. Everyone can be a hero in some ways.

Reflections From Me

After Recovery

This week, the One Word blog linkup has “after” or “pretend” as the choices of words. I could write a post inspired by both of these words, but I need to choose one. When I found out about this week’s words, immediately an idea popped up in my mind, inspired also by my eating disorder recovery journaling project. What would my long-term goals for recovery be, and what would my life look like after I fully recover?

The answer to this question of course depends on the question: recover from what? Just my eating disorder or mental illness in general. In the latter case, I need to note that recovery is not the same as cure. Recovery means living beyond the illness, not necessarily without it. In Dutch, the word for “beyond” is “voorbij”, which in most cases connotes the thing we go beyond has passed. In English, the word “beyond” does not have such a connotation.

First, let’s pretend (ha, the other word sneaked in!)j that I can be fully cured of my eating disorder. This is in fact not just pretend, as people do live past their eating disorders. What would this look like?


  • I would be able to snack without losing control.

  • I would not feel guilty (most of the time) after eating.

  • I would no longer compensate for (over)eating in an unhealthy way, such as by purging.

  • I would feel okay about my body. This does not necessarily mean I’m at a healthy weight, as weight loss is a completely different journey from eating disorder recovery even if your main behavior is bingeing. It would simply mean I’d no longer hate my body.

  • I would have and use healthy ways of coping with stress.

This is where recovery form mental illness in general, in my case borderline personality disorder, comes in. After all, one of my primary goals in recovery is to develop healthy coping mechanisms.

Suppose I developed those healthy coping mechanisms. What else would I want to have accomplished after recovery? First, I’d like to feel mostly stable. I’d still have down days and up days, would still get angry at times, because that is human. I would, however, no longer experience those intense states of hopelessness which usually lead to destructive coping mechanisms or feel chronically empty.

Another way of looking at recovery, however, is to look at what I want my life to be like beyond my illness. In other words, what would I like to achieve in life in spite of my mental health problems. Here goes:


  • Live with my husband.

  • Be able to do a volunteer job>

  • Be able to spend enough time on my hobbies not to get bored, but not so much that I get overwhelmed.

  • Be grateful for the smaller and larger joys of life without immediately second-guessing myself.


Lastly, this is somewhat unrelated to recovery. It is more a general life goal. I’d love to write my autobiography.

Top Ten Favorite Foods (If Calories Were No Issue) #TuesdayTen

This week, #TuesdayTen is all about our favorite comfort foods in honor of National Junk Food Day. What would be the top ten foods you could consume forever if calories and nutrients weren’t an issue? This may seem like just a fun question to ponder, but it could give us insight into why we eat what we eat.

I for one don’t have that much of a sweet tooth. I don’t like cake or pie, except for homemade apple pie. I am very critical when it comes to eating cookies. Chocolate would probably be way down my list, if it’s in the top ten at all. Yet with certain sweets, such as winegums, I can consume a whole bag in half an hour. I just did.

Here is my top ten list of foods I could consume endlessly.



  1. Black liquorice, the sweet kind. This has to be at the top of my list because I consume it more than any other confort food. American readers of this blog have told me that, in the U.S., black liquorice is usually what’s left over when the rest is eaten. In the Netherlands, there are basically two kinds of black liquorice: the swet kind and the salty kind. Give me the sweet ones, and especially those with real sugar in them. My husband has a box of sugar-free, sweet black liquorice in the car, but I don’t particularly care for it.

  2. French fries. Oh, how I love fries. More so do I love the snacks that come with them. I actually searched to find out whether there is an English name for “frikandel”, one of my favorite snacks, but there isn’t. The spicey minced meat we call Mexicano however has to be my all-time favorite snack with fries.

  3. Pizza. My husband said he only wants to go to the American-style pizza place about a fifteen minutes’ drive away “once in a while”. When I asked him what this meant, he said it meant once a year. There is an Italian restaurant at a five minutes’ walking distance from our apartment and we buy refrigerated pizzas regularly, but they aren’t as good (or as large and filled!) as the ones there.

  4. Mexican food. I love anything spicey and I love tacos, burritos and what have you. They however are quite hard to eat for me, as I tend to spill my food all over the place.

  5. Pasta. Macaroni specifically, that is. I don’t particularly care for spaghetti even though it’s technically the same substance. Give me some delicious macaroni with lots of peppers, onions and garlic any day though.

  6. Chicken. Any meal can be made more delicious with some chicken added to it. Yesterday, my husband and I bought some vegetarian fake chicken (my husband has gone vegetarian again). My husband commented that it may taste even better than real chicken. Though the fake chicken wasn’t bad, I had to disagree.

  7. Cheese twists. I don’t know whether this snack is well-known in English-speaking countries even though in the Netherlands it has this English name.

  8. Croissants. I buy them almost every week at the bakery stand when it opens near the town store on Friday mornings.

  9. Winegums. Mentioned them before. I get nauseated from eating a whole bag of them, but it doesn’t keep me from repeating the same offense on my body over and over again.

  10. Seasonal candy. Maybe it’s because they’re seasonal, but even now in July I crave cinnamon star cookies. I didn’t find them last year and you bet I’ll be on the hunt for them early this year. In general, I love most St. Nicholas and Christmas candies, though I don’t like almod pastry and don’t really care for chocolate letters.

The Golden Spoons

A Lighter Shade of Blue?: Dysthymic Disorder

Most people think they know what it’s like to be depressed. We’ve all had a day or two when we’ve felt down and hopeless, had a hard time sleeping at night and dragging ourselves out of bed in the morning, and had a decreased or increased appetite. While these all are symptoms of depression, in major depressive disorder they are severe and occur for weeks or sometimes months on end. They also manifest as a clear deviation from one’s normal functioning

On the surface, dysthymic disorder (or dysthymia) seems less severe, which is why I’m using the metaphor of a lighter shade of blue. Dysthymic disorder, as it was described in the previous edition of the psychiatrist’s manual, DSM-IV, manifests itself in a depressed mood most of the day, on more days than not, accompanied by at least two of the following symptoms:


  • Poor appetite or overeating.

  • Insomnia or hypersomnia.

  • Low energy or fatigue.

  • Low self-esteem.

  • Poor concentration or difficulty making decisions.

  • Feelings of hopelessness.

However, while the symptoms of major depression need to last for at least two weeks, those of dysthymia last for at least two years (or one year in children and adolescents). Therefore, while everyone can probably tick off some (or even most) of the symptoms mentioned above every now and again, that is quite different from having dysthymic disorder. I have had symptoms of depression on many occasions, but I can’t say I’ve had them for most of the time persistently over a two-year period.

In the current edition of the psychiatrist’s manual, DSM-5, dysthymic disorder has in fact been replaced with persistent depressive disorder. This category includes both the “lighter shade of blue” of dysthymia, as well as chronic major depression. After all, the creators of DSM-5 felt there is no meaningful difference between chronic major depression and dysthymia. The difference between persistent depressive disorder and major depressive disorder is, thereby, no longer one of severity but one of pattern or course of development. In major depressive disorder, individuals tend to relapse and remit (get better and worse). Persistent depressive disorder tends to linger for years.

I do not have dysthymia. Why, then, am I writing this post? Quite frankly, just for the sake of raising awareness. When I found out that Mumturnedmom’s prompt for this week is “blue”, this is what I thought of. I hope I have educated a few people, including myself. I am a member of some groups on Facebook for depression, and I don’t know that I should be. I, after all, do not know what it is like to be severely depressed or persisistnetly depressed for a long time.

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Physical Effects of My Eating Disorder

The first journaling question in Journaling in Eating Disorder Recovery is about body image. The author asks you to journal about what your eating disorder is doing to your body. She also asks you to contemplate whether your body image is worth these effects.

My eating disorder mostly involves bingeing, which is good for neither my body nor my body image. After all, it not only causes me to be nauseated after a binge and get acid reflux (I believe this is also triggered by bingeing and not just by purging), but above all it has caused me to gain about 40lbs in a two-year period. As a result, I am now about 30lbs overweight. This of course results in poor body image, because, you know, I don’t just think I am fat.

I just googled the physical effects of bulimia, and some I find are related to bingeing. For example, people who binge get a bloated stomach and stomach pains. The bloated stomach causes it to take longer before you feel full. A severe binge can even lead to a ruptured stomach.

I also purge on a semi-regular basis. While I don’t purge nearly as often as some bulimics, I do vomit significantly more than people who are sick every now and again with a stomach bug. Purging can have the following effects:


  • Tooth decay.

  • Erosion of dental enamel.

  • Dehydration.

  • Irritation of the esophagus.

  • Sore throat.

  • Acid reflux.


I have many of these symptoms.

Of some symptoms I found, it isn’t stated whether bingeing, purging or laxative use causes them, but I have them whichever is the cause. For example, one source listed acne as a possible effect. I use to think I’m too old for acne, but nonetheless I do get an eruption when my eating disorder is particularly severe.

Effects that aren’t mentioned, are the long-term consequences of obesity. Think, for example, type 2 diabetes. I don’t know where he found this so can’t check the source, but my husband says that eating lots of sweets is now thought to actually lead to type 2 diabetes because of leading to a chronically elevated blood glucose level.

Is my body image worth these consequences? Of course, my body image is damaged by my being obese, but what if purging actually causes weight loss? Note in this sense that in my case it hasn’t led to weight loss, but just suppose it did. Then, still, I would have to say that health is more important than outer beauty.

I do, however, sometimes believe that purging can’t hurt while obesity can. In this sense, I weigh the health risks rather than the effects on my body image. Or do I?

After all, people’s encouraging obese people to lose weight for health reasons is generally coupled with a lot of shaming of people’s fat status. Even if other people don’t say so, I tend to think that I need to lose weight to be good enough. I still tend to think my husband doesn’t find me attractive even though he’s stated a few times that his reason for encouraging me to lose weight is my health. Other people, like some staff, do more clearly fat-shame. For example, we get metabolic screenings, including waist measurements, every six months to a year. At my last screening, the nurse took my measurements and then commented I really need to lose weight. So far it could still be interpreted as pure concern for my health, but another patient was next. She took this woman’s measurements and then commented to me: “See, it can get worse.” That really was an unnecessary comment that instilled shame rather than motivation to get healthy.

Brilliant blog posts on HonestMum.com

Pros and Cons of My Eating Disorder

I have truly been relapsing in the eating disorder department lately. I don’t really know why, other than the fact that I’m quite irritable lately. This, though, seems to be a vicious cycle: I go from irritability to thinking about bingeing or purging to actually bingeing or purging and back to irritability.

In order to help myslef think clearer about my disordered eating habits, I bought the eBook Journaling in Eating Disorder Recovery by Laurie Glass. The book contains a multitude of suggestions for journaling yourself into recovery. One of the suggestions is to make lists, for example of feelings or thoughts. I really love list-making.

The book also contains journaling questions. I don’t know whether a pro/con list for your eating disorder is in them, but I made one recently. I made it for a pro-eating disorder site that I used to go to, but I left it. I might still be a member but don’t want to trigger myself by checking the list there. Let me make a new one.

Pros of my eating disorder:


  • Relieving stress.

  • Feeling something in my body rather than in my mind.

  • Being able to eat as much as I want of the foods I love. This one isn’t really true, as I’m not sure I want to eat till I’m nauseated. I however have the thought that if I recover, I need to adhere to a strict diet and can never have candy or pizza again.

  • Avoiding the physical and mental sensations of hunger.

  • Expressing that I’m not feeling well. This may be in the sense that eating disorder behaviors are a cry for attention, but also that they impress the reality of my struggles upon myself.

  • Avoiding pressures such as college or work or independent living.

Cons of my eating disorder:


  • Weight gain and the resulting obesity.

  • Acid reflux from purging. Possible esophagus damage as a result.

  • Not being able to engage in healthy social interactions because of having food on my mind all the time.

As you can see, I find I can think of far more pros for my eating disorder than cons. However, ultimately, these pros are based on the idea that I do not cycle from irritability to thoughts about disordered eating habits to eating disorder behaviors and back to irritability. In reality, the stress relief, for example, is very short-lived. For instance, I just binged terribly about an hour ago and have been feeling guilty and angry for the past thirty minutes at least.

Five of My Biggest Fears

One of the questions in the 31 days of BPD challenge asks us to list five of our worst fears. I just came across a journaling prompt that asks the same quesiton, but had me explore these fears more in depth. I don’t know where this will take me, but I’m going to list some of my fears and journal about them.

1. Demands. This is really my number one fear. I go crazy everytime a person expects me to go out of my comfort zone. It isn’t that I can’t go out of my comfort zone per se. I take leaps out of it on my own regularly. It’s more the pressure from others that I fear. For example, I tend to be far more capable as far as practical skills are concerned when no-one is looking. I also sometimes take the initiative to try new skills when people are looking but are not expecting me to do these things. On the other hand, when someone tells me I can do something and demands I demonstrate this ability, I freeze, flee or fight.

2. Growing up. Sounds weird for someone who is almost in her thirties, but I mean this in some ways related to the above one. However, it is different in that growing up for me means missing out on things expected of people my age as a result in part of my demand avoidance. I am not sure this dislike of growing up is truly a fear in the traditional sense of the word. It seems it’s more like a sense of dissonance, because in some ways, I’m still a teen at heart.

3. Abandonment. This is really the root fear that causes fear of rejection and on the surface fear of crticism in general. I am a terrible grudge-holder myself, but also tend to hold on to shame for a long time. As a result, I tend to fear that people are going to abandon me if they’ve been even slightly critical of me, because I tend to assume these people hold onto grudges for as long as I do.

4. Illness. I admit it, I’m somewhat of a hypochondriac. I fear falling ill with a life-threatening condition all the time. Then again, I also tend to be fascinated by this possibility. For example, I am drawn to reading books on people with life-threatening or life-altering illnesses. In this sense, my attitude towards this possibility has changed over time. In 2008, I was convinced I’d die that year and it scared the crap out of me. Now, I’m more fascinated than fearful.

5. Poison. I have mentioned this one before I believe. I have always had this irrational fear of being poisoned. I also may exhibit some magical thinking related to this. For example, I used to believe that tap water was really the latest poison I’d heard of. Because of my fear of poison, I developed some compulsive behaviors. For example, when I still had some sight, I’d check the color of liquids I was about to drink to make sure they weren’t poison. I did similar things in relation to the fear of illness I mentioned above.

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