Positives for the Week Starting February 23, 2015 #HappyDaysLinky

This week has been challenging. I’ve been very fatigued. This is nothing new as I’ve had terrible fatigue for a few months already. I also had a dizzy spell on Monday. Since my blood pressure was fine, there hasn’t been an obvious cause. I’m due to get blood drawn to check for hemoglobin and vitamin levels to see if either could explain the fatigue today.

On the old version of my Dutch blog, I used to post happy moments every now and then. Many other Dutch bloggers do this to focus on everyday enjoyment. I just found out that there’s a linky for this in English too. It’s the #HappyDaysLinky. So let me list some things that were good about this week.

1. Getting my braille display back. I got it back on Tuesday and was so relieved. I honestly hadn’t expected it back till later this week at the earliest. Since I hadn’t received a call from Freedom Scientific, the copany that manufactures them, I was expecting it to take much longer. I’m so glad the thing came back, so that I am now fully able to enjoy my online life again.

2. WiFi at the ward. Another thing that will enable me to enjoy my online life more, is that we got a WiFi connection at the psych unit I reside on. It won’t reach my room as the emitter is at the opposite end of the building, but I’ve been able to take my computer to the front room to enjoy the best signal. I don’t think I’ll be using the connection often except to download digital talking books, but it’s a good thing that it’s there.

3. Chocolate! I bought myself a box of chocolates on Monday and truly enjoyed them. Unfortunately, I ate a little too many and got sick, but that went away quickly.

4. Going for walks. The flu has stricken many of the nurses, so there’s usually fewer staff on my unit. That being said, I have been able to enjoy a few walks with the staff. I had a long walk with a substitute staff member on Sunday. Normaly staff can’t take patients on walks on week-ends because there is even fewer staffing, but apparently it was quiet enough on the ward that one could leave. Yesterday, I had to squeeze in art therapy between breakfast and going to the doctor for the fatigue. It was originally frustrating to have the art therapist arrive late, but I made up my mind that this was a great opportunity to go on a walk instead of doing actual art therapy. After all, by the time we’d reached the art therapy building, it’d almost be time to return to the unit for leaving for the doctor’s. I had a nice walk.

I am hoping next week will see at least as many happy moments. I heard the activity staff are introducing movement-focused activities in the day activity room across from my unit. I am looking forward to participating.

My goal for next week is to spend more me time. I hope to focus on writing and hope to also start yoga again. If not at day activities, then I hope to do it in my room.

What Katy Said

28 Before 28

It’s been a while since I wrote on this blog. I started up a Dutch blog again, and this time I hope that neither this blog nor the Dutch one suffers from my having two blogs. The reason I didn’t post for a while has nothing to do with the Dutch blog though. It’s to do with the fact that my braille display needed repairing and they took it into the shops for repairs rather than trying to fix the thing while I waited. This originally meant, or so I thought, that I couldn’t use the computer at all. Thankfully, I figured out the text-to-speech functionality and could do some Facebooking and blogging in Dutch. The synthesizer doesn’t do English though, so blogging here was out.

Even though I had over a week without blogging, I didn’t get lots of inspiration, because I couldn’t read the mostly English-language posts I usually get my inspiration from. I am determined to write though, so I’m going with Ginny Marie’s spin cycle prompt. The prompt is “28 things”. I originally thought about taking the easy way out and writing 28 random facts about myself, but then I realized I am 28 right now. Therefore, I choose to write 28 things I did before turning 28. Not all of these are truly achievements I made, but oh well.


  1. Went to three different elementary schools and two secondary schools. Graduated high school in 2005.

  2. Learned three foreign languages (English, German and French) and Latin. Forgot all but English and a tiny bit of German.

  3. Taught myself calendar calculation.

  4. Went to a school prom. Once or maybe even twice.

  5. Had crushes on only three different people. All of them were unapproachable. I don’t know whether I could even call what I feel for my husband a crush.

  6. Went to college and university. I attended college for a year and university for all of two months.

  7. Took five college courses in psychology. Passed two, failed one and never took the test for two.

  8. Lived on my own. For three months, but I did it!

  9. Got married.

  10. Lived in four different cities/towns, three of which are in the province of Gelderland.

  11. Rented an apartment with my husband.

  12. Got two cats.

  13. Traveled to France, Germany, England, Switzerland, Italy and Russia.

  14. Had eight major surgeries, seven of which I had before the age of nine. The eighth was my eye surgery in 2013.

  15. Got my wisdom teeth and had them out.

  16. Was diagnosed with Asperger’s Syndrome, borderline personality disorder and a host of other psychiatric conditons that I got dediagnosed with again.

  17. Was on at least a dozen different medications, ten of which were psychiatric medications.

  18. Had at least a dozen online journals and blogs.

  19. Was the owner for four or five Yahoo! E-mail groups and one Facebook group. None of them are currently active. Created another (also inactive) Facebook group and became a co-admin for a Yahoo! group and a Facebook group that are both active at age 28.

  20. Wrote a resume. Once. Because it was a college requirement.

  21. Spoke to two members of parliament in person. One came to my high school and the other came to the blindness rehabiliation center. Both were from the Christian party.

  22. Was a member of the Socialist Party.

  23. Voted for them only once and voted for two other parties, both on the left of the political spectrum.

  24. Participated in two debating contests representing my high school.

  25. Was a member of a children’s choir even though I cannot sing to save my life.

  26. Owned the DSM-5, the current edition of the psychiatric manual, even though it’s not in use in the Netherlands yet. Read most of it.

  27. Had twelve computers, three braille displays (and got my fourth one just after my 28th birthday) and four mobile phones. All of my computers were laptops and none of my cellphones were smartphones.

  28. Attempted to write my autobiography at least half a dozen times.

Valentine’s Day

Yesterday was Valentine’s Day. I didn’t get to write as I spent the afternoon and evening at my husband’s and the night rediscovering IRC chats. I didn’t know they are still active, or at least some of them, and I certainly didn’t know how to access them. Last time I tried, some years ago, I got some malware on my computer. Now I just went with a web client.

I honestly hadn’t expected my husband to come pick me up at all, since I thought he’d go visit a friend. I knew it was Valentine’s, but I didn’t think that was a big deal. But when I called on Friday because i’d badly screwed up my computer, he said he’d come and fix it.

We don’t really have Valentine’s Day traditions, or not that I know. I know in 2008, when my now husband had already told me he was in love but I hadn’t answered him yet, he sent me a card. It was really not a card, but a piece of paper brailled with some kind of sharp object in place of a slate and stylus. I couldn’t read it, but kept it on my nightstand for a few months at least anyway. Not really because I intended to, but it just happened.

Ironically, on the same day, I wrote this really embarrassing (for my husband, and probably it should be for me too) post on my old blog about my ideas about having a relationship. I’m not going to link to it, but it laid the foundation for the decisions we made early in our relationship, and possibly without that post, I wouldn’t have had the courage to enter a relationship. I just can’t express myself that well in direct contact, as the fact that I waited over a month to answer his E-mail about the post illustrates.

Each year for Valentine’s, I resolve to give my husband some special treat. Each year, I forget or get overwhelmed in the process. I remember probably in 2009 looking for somethign special and finding pepper-spiced dark chocolate online, but somehow not being able to order it. My husband on the other hand has given me chocolate probably actually every single Valentine’s. This year, they were chocolate flowers. Yummy! Maybe my husband being the romantic kind and me thanking him (on my blog!) has to be the tradition.

This year, in addition to my husband picking me up and giving me chocolate, we went to Domino’s to take out pizza. I didn’t even remember I’d told him I wanted to get pizza there someday, as we used to do sometimes when he still lived in the college dorm. It’d been on my mind recently too. I got one of my favorite pizzas, but no, not pepperoni this time.

One thing I hope won’t be a Valentine’s tradition is my husband having to fix my comptuer. He did, for which I’m hugely grateful. I just don’t want to make a tradition out of burdening him with my computer ignorance. Then again, I guess he’d be happy if I made a Valentine’s tradition out of it, if I just left it at that.

Mama’s Losin’ It

Post Comment Love

New Definition for ME/CFS: Exclude People with Mental Illness?

I follow a few blogs by people with chronic pain and fatigue conditions. On one of them, I came across the new Institute of Medicine (IOM) report on the diagnosis of chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME). In this report, the IOM propose a new name and criteria for CFS/ME. Most people in the CFS/ME community are mildly positive about the new proposed name, which is systemic exertion intolerance disease (SEID). They don’t like the emphasis on only exertion intolerance, but they consider it better than the dreaded term “fatigue”.

What remains controversial is the definition of SEID. It is defiined by the following core criteria:


  • A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.

  • The worsening of patients’ symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise

  • Unrefreshing sleep.


In addition, a person must either experience cognitive impairment or orthostatic intolerance (symptoms being worse when in an upright position and lessening when lying down).

Problems with these new proposed definition include it ignoring common additonal symptoms, such as gastorintestinal symptoms, sensitivity to stimuli, pain, etc. I heard that these symptoms are included in an addendum to the IOM report somewhere.

What is further said to be problematic is that the definition is overly broad. Particularly, a psychiatric diagnosis does not preclude a diagnosis of SEID. Why this is a problem, I wondered, and it led to a heated debate.

I have written about this before, and got many defensive comments from ME/CFS sufferers saying that a physical illness requires different treamtent than a mental one. I agree, and I think (and just checked to make sure) I said that there is evidence that ME/CFS/SEID/whatever is physical in nature. The fact remains, however, that no blood test or whatever can diagnose it, so there is no way to distinguish it from somatization (psychological problems leading to physical symptoms).

I understand that there is a huge stigma associated with mental illness and that ME/CFS/SEID sufferers don’t want to face the same stigma. I also understand that bloggers cannot advocate for every single person or group of people in the world. Then again, the solution isn’t to purposefully exclude groups of people from the treatment or rights you advocate for.

So let’s get the facts straight. ME/CFS/SEID leads to profound physical symptoms. There is, however, no test to diagnose it, like a blood or urine test or whatever. No mental illness precludes people from falling ill with physical symptoms, though people with certain mental illnesses are more likely to suffer with physical symptoms. This does not mean these symptoms are due to the person’s mental illness. Furthermore, the current edition of the psychiatric manual, DSM-5, does not require a thorough physical examination and exclusion of all physical illnesses in order to diagnose somatization. Therefore, there is basically no way to differentiate an illness with physical symptoms for which there is no objective diagnostic tool, such as ME/CFS/SEID, from somatization. Whether ME/CFS/SEID is seen as mental or as physical, is largely an issue of politics.

Let me be clear that I side with the people who say that ME/CFS/SEID is physical, simply because it causes profound physical symptoms. Unless a person is faking their symptoms for external gain, there is no way to deny that they are real. But this is still a political opinion, not a medical one.

The reason people want ME/CFS/SEID to be seen as physical, is because of its treatment. Sufferers have often experienced the horrors of graded exercise and cognitive-behavioral therapy, which quite often do not work. At the same time, they seem to want people with mental illness, including those wiht comorbid physical symptoms, to get graded exercise and CBT. Fine with me if it works, but what if it doesn’t? Again, there is nothing in a mental illness that precludes its sufferers from falling ill with a physical illness too. Since there is no way to tell somatization and ME/CFS/SEID apart, you choose whether they’re both physical or mental, or you treat each person based on what works for them individually. I advocate the latter.

I have a diagnosed mental illness and largely unexplained physical symptoms, including exertion intolerance. My diagnosis for the symptoms that have been given a label, is irritable bowel syndrome, which similar to ME/CFS/SEID, is not diagnosable through an objective test. CBT has not worked for me. I tried exercise, though not a graded exercise therapy (GET) program, and it made my symptoms worse. Maybe if I did actual GET, it’d help. That would mean that, in my individual case, my symptoms (at least the ones responding to GET) are treatable with behavioral change. It would not even say whether my symptoms are physical or mental in nature, if there’s even such a distinction. However, for the sake of simplicity let’s assume that, for those for whom GET/CBT works, their symptoms are mental. That doesn’t mean that, for those whose symptoms are judged as mental, CBT/GET should work, and again, this is a political choice. It wouldn’t say anything about the next patient with my diagnosis and my symptoms. It certiinly wouldn’t say anything about a person with much more severe physical symptoms than mine who happens to have a diangosed mental illness. It’s complicated, but until an objective test for ME/CFS/SEID (and all other such illnesses) is found, that’s the fact we need to deal with.

List of Things I Love #TuesdayTen

Today on Tuesday Ten and this week on the Spin Cycle, “love” is the theme. Not romantic love, as both hosts felt this was too cliche. The theme is rather simply listing things you love.

I need some positive vibes at this momemnt, because I’m frustrated. My psychologist is on maternity leave and this essentially means no therapy for four months. The psychiatric resident who is now my treatment provider, focuses on distraction. This isn’t great when I’ve been doing it for months (because I got this psychologist only a while ago and she didn’t want to start working on stuff till she’s back from leave). Then again, for now it might just help me to focus on things that make life positive. Therefore, I’m going to parttake in this challenge and list ten things I love.

1. Country music. Particularly, I like German country, such as Tom Astor and Truck Stop. I just had 14 Tage auf dem Brenner by Tom Astor on repeat on YouTube (only a few times or it’d cost me too much data), and am now listening to the rest of his music on my computer. I just happen to like the YouTube version of 14 Tage auf dem Brenner more than the one on my computer.

2. Juvenile fiction. The last book I finished is A Different Me by Deborah Blumenthal (see my review). To my surprise, Blumenthal saw my review without me having notified her, and she appreciated it. I have two more eBooks in the teen fiction category on my reading list, one of which I unfortunately still can’t load (and the Kobo contact form sucks). The other sounds like something I will probably love.

3. My lavender-scented shower gel. I bought it at a discount supermarket so there’s probably not a trace of lavender in it, but I love the smell.

4. Black liquorice. For those Dutch people who know me, I don’t need to say more. I unfortunately have never been able to convey my love for the taste to someone outside of the Netherlands. Like, when I went to Russia in 2000, I brought a bag of liquorice and other typically-Dutch candy for the family I’d be staying with, and I was the one eating it. Worse yet, I don’t even see black liquorice in supermarkets in Germany. It’s a shame! I particularly love the sweet kind. Don’t care for the salty kind that much.

5. Pepperoni pizza. Now that we’re talking food anyway, this has to be my favorite pizza. I love it even more when it’s homemade. My father used to make great pizza when my sister and I were little. Of course, we got to top our pizza slices ourselves.

6. My stuffed animals. I have a stufed whale that I’ve had since I came home from the neonatal unit, and a stuffed cat that I got for my high school graduation. I can’t find the whale right now, but the cat oversees my pillow.

7. The real life, flesh-and-blood cats. My husband has two cats at his apartment, Harry and Barry. Though they can be a bit annoying at times (and that’s a huge understatement), they are still lovely. I actually have thought about doing some cat posts here on the blog, but I don’t have any pictures of the cats and honestly wouldn’t know what to write about them.

8. My AromaStream essential oil diffuser. Probably mentioned this one in another Tuesday Ten post or something, but I truly love it. I am not too big of a believer in aromatherapy, though I believe in it a bit. Then again, even just having a nice scent in the room can be comforting.

9. Coffee. I have been drinking coffee since I was about six. For a special treat, I particularly love cinnamon coffee. Simply add a sniff of ground cinnamon to the ground coffee (one teaspoon for twelve cups of coffee) in the basket of an automatic drip coffeemaker. To make it extra special, you can serve the cinnamon coffee with a cinnamon stick and whipped cream sprinkled lightly with ground cinnamon. If you just serve the cinnamon coffee as is, the cinnamon taste isn’t overpowering.

10. All my craft supplies. I haven’t used them in a while, but still love looking through my stash. Yeah, I’m a bit of a hoarder.

The Golden Spoons

Asking for Help

Asking for help. It’s one of those things many people have difficulty with. I am no exception. There are many reasons for this. Like, I’m somewhat anxious in social situations. In fact, on an online but seemingly pretty formal questionnaire (the Liebowitz Social Anxiety Scale), I score as having very severe social anxiety. It surprised me a little, given that I have only mild difficulty stirring up a conversation with basically anyone. Then again, most of the situations asked about were situations in which you had to do more than stir up smalltalk, such as asking for help.

I have always had trouble asking for help. Unfortunately, due to my disabilities, I often need help and I can’t avoid communicating somehow that I need it in the end. Ironicaly, this often led to me coming across as very demanding, because I would eventually get frustrated trying to do things on my own and “ask” for help in an aggressive way.

I am somewhat better now at asking for help before the situation escalates, but this is also because I have some momnets when I can ask for staff help in my daily routine. I don’t mean that I can’t ask for help at other moments, but it’s harder to do in unexpected situations.

Anxiety is one factor in preventing me from asking for help. I fear I’ll be a burden, but end up being a burden in the end because I can’t handle many situations on my own.

Another factor, however, is that I often get so overwhelmed with situations that I can’t pin down what I need help with. For example, when I have a computer problem, I often feel like the whole stupid device is crashing when in fact it might just be a particular eBook won’t load (this was a recent actual situation). In this situation, I ended up melting down because I thought my computer was crashing and I didn’t know what else to do than work on the computer and well now I probably needed to buy a new computer anyway, and… you get the idea. The question about what you’d do if your computer crashed, is the only one I end up answering “incorrectly” (ie. like a neurotypical) on the NT screening test on Autistics.org. Then again, I doubt having a massive meltdown is particularly characteristic of neurotypicality. I answer that I ask a family member, but usually, I don’t.

The worst about asking for help is that you have to be really clear about what you need help with and how the other person can help you. This is hard enough when I’m mentally well, but when I am in a bad mental state, this is not possible for me. Fortunately, some good mental health professionals recognize this. When I am in a psychiatric crisis, I usually can’t say what I need, because I have no clue. In this situation, even though I ultimately have the right to refuse intervention because I’m an informal patient, I need peoople to propose what might be best for me. Unfortunately, some people just look at my diagnosis, borderline personality disorder (and forget the autism), and say I am an adult so need to take responsibility for my own life (even though adults with other diagnoses get much more directive care). I may not like being told what is best for me, but sometimes, making this choice is exactly what I need help with.

Mama’s Losin’ It

Night #WotW

It’s another sleepless night. Tonight, I’m thinking over whether to transfer the two domains I own, which are both registered with different providers, to one. A third one, that is, because both of my current providers have problems. The one I use for this blog is fine as long as I don’t need to change anything, but it requires a shitload of information if you haven’t memorized your password and you do want to make changes.

The one I use for my E-mail, I just came up with like four reasons to transfer it:


  1. I don’t need 7500MB of space and 75GB of data for just my E-mail and I don’t want to pay for it either. While the hosting isn’t terribly expensive for what they offer, the 7500MB/75GB package is their only product. I could pay a third of the price for a small package at where I want to move to.

  2. Either they or I screwed up the control panel. Not that I did anything to it, but half of the functions that are supposed to be in there, including installing applications, are hidden far away. Their application installer is rather unusual too, so I keep getting errors when trying to install apps. Could be because I’ve been playing with apps through FTP (because again the installer wouldn’t work) when I still used FTP. Which, by the way, I won’t be using again unless anyone can recommend a good FTP client that isn’t loaded with junkware. I just screwed up my computer with a used-to-be-trusted client. But I digress. The hosting provider I want to move to, has INstallatron as their installer, which is basically standard stuff. So if I want to build a site anyway, I could.

  3. I keep getting certification errors when trying to log in to DirectAdmin. This could be normal, but I don’t trust this.

  4. Most importantly for my current usage of this package, I hate their extensive spam filter. It’s a spam filter that sits before the server, so you don’t get to even see your spam messages if you want to. This has led to E-mail from several forums and social networking sites not getting through. I could disalble the thing as it isn’t a standard feature, but their basic spam filter is really hard to work. I don’t know of course whether another provider has a better spam filter. What I’d look for is something where you can just click a button on an E-mail message to mark it as spam and it learns this way.

Then this whole thought led me to thinking of self-hosting my blog too. I don’t know whether that’d be much harder than working WordPress.com, and in fact I have some experience self-hosting a blog that went pretty smoothly (though no-one ever visited and I only had it for like a week or two). Both the good thing and the bad thing is that it allows for more customization. It’s good because, if it works, I can set up more functionality and usability. It’s bad because, if it doesn’t work, I might (or more likely will) just screw up my blog. At least this way I will avoid getting “you should self-host” as an answer to all my WordPress questions in blogging groups. As a side note, even if I don’t end up choosing to self-host, I may want to move my domain name because at my current provider I pay like E22,50 a year whereas it’s E7,99 elsewhere.

I don’t know why these thoughts keep me awake. Last Wednesday, it was trying to find a good private journaling site after all software I tried, even the one that could’ve been great, failed to meet my expectations. I haven’t yet made up my mind on that one.

Technology isn’t the only thing keeping me up at night. Another thing is just a terribly melancholic mood. This evening, I joined some Dutch preemie parent groups. The members have been very supportive, but I keep rewriting my words just to make sure I don’t sound like I’m bashing my parents. Apparently I did with last Monday’s post. After writing that one, I also couldn’t sleep much at all.

As a result of both the technological and emotional navel-gazing, my circadian rythm has been pretty non-circadian lately. I end up sleeping at the weirdest of moments and at least staying up most nights. I am therefore choosing “night” as my word of the week.

The Reading Residence

Book Review: A Different Me by Deborah Blumenthal

A few weeks ago, I was given a promo code on Kobo for having been a customer for a year. I searched for interesting juvenile fiction, and came across A Different Me by Deborah Blumenthal (Albert Whitman & Company, 2014). The synopsis sounded interesting, so I decided to buy the book, and finished it within a week.

Synopsis

Allie Johnston’s secret wish since the day she was twelve is to have her nose done. But she hasn’t told anyone – not her parents, or even her best friend, Jen. But when she starts visiting a plastic surgery discussion board on the Web, she finds people who get her, for the first time in her life. Her new friends, including two girls her age with vastly different backgrounds who share her obsession with changing their faces—but for very different reasons. A sharply written, insightful book about learning to be happy with who we are.

My Review

For the most part, I liked this book. Most characters are really formed, though on the surface they may come across a bit superficial. That’s the whole point of the book I believe: even if a person may seem shallow, often you don’t see what’sinside of their minds unless you really attempt to get to know them. For example, Amber, the most goodlooking girl in the school, has a hidden life of pain that Allie doesn’t get to find out until she looks beyond Amber’s outward appearance.

The character of Allie herself seems to have deliberately been developed to seem a bit boring. Unlike Amber and some other characters, she doesn’t have much drama in her life. All she has is a screwed body image. This again serves the point of the book well: Allie may have a bump on her nose, but overall she has a pretty good life.

The book’s ending in terms of Allie’s nose surgery (which she ends up canceling at the last moment) is quite predictable. However, it’s not whether she has surgery that makes this book interesting, but the mental processes leading up to her decision. In this sense, I was more interested in learning about the other characters than I was in learning about Allie. After all, it’s the other characters who teach Allie that it’s not her looks that make her who she is.

MamaMummyMum

Birth Story (Again!)

This week’s spin cycle prompt is “birthdays”. I have probably told what I know about my birth a dozen times, but you can’t raise enough awareness of premature birth. Or pester your readers enough about the emotional pain it inflicts.

I was born on Friday, June 27, 1986 at 12:03 AM at Dijkzigt Hospital in Rotterdam, Netherlands. I had my first ambulance ride right that night when they took me to Sophia Children's Hospital. Both hospitals are now part of Erasmus Medical Center, the university hospital in Rotterdam. Sophia Children's is the largest and oldest children's hospital in the Netherlands, having celebrated its 150th birthday a few years back.

I was estimated to be born at 26 weeks and four days gestation. When I was fifteen, I calculated what should’ve been my due date based on the day I was conceived (which my parents knew precisely because it was my father’s birthday). I then figured my gestational age should’ve been 25 weeks and two days. This weighed heavily on me because my mother had told me that, back then, they didn’t treat babies born under 26 weeks gestation. Now I realize that estimated due dates are just that: estimates. You can’t determine a baby’s gestational age just by looking at it, and the date the baby was conceived ony loosely predicts the date the mother last menstruated. Furthermore, I’ve never been able to find information on guidelines for treating babies in 1986. Now, doctors do have strict guidelines by which they don’t usually treat babies born under 25 weeks gestation. See my reasoning above for why this is nonsensical.

I spent 94 days in the hospital, of which I spent roughly six weeks on the ventilator. I went home on my supposed due date, September 29. While in the hospital, I had all three problems now seen as predictors of poor outcome: a lung infection, retinopathy of prematurity (the eye condition from which I’m now blind) and probably a brain bleed leading to hydrocephalus. The ROP and hydrocephalus were both discovered when I was five months old.

Each year around my birthday, my parents tell stories of how they walked down Gordelweg, where Sophia Children’s was located at the time, from the metro station to the hospital. In Rotterdam, cars are more of a hindrance than a help, so they didn’t have one. I don’t remember ever walking that route because I was discharged from follow-up when I was three. Now, I tell this story more often on my blog than my parents tell it to me.

As I’ve mentioned a couple of times on this blog, my birth story still impacts me. Having become more laid-back about my due date has helped. When I was a teen, I truly thought I’d be retroactively taken off life support for being a poor outcome. I still think so at times. Sometimes, I wonder what it takes to heal the psychological pain that I feel the circumstances surrounding my birth inflicted.

Ways to Cope with Anxiety

A fellow patient was screaming a lot today. It made me feel anxious, yet I was too sleepy to get out of bed until it really got on my nerves. Situations like these are hard to cope with, since the fear is not just “in my head”. Yet I get anxiety that is actually “in my head” a lot too. Some of it takes the form of worry, while other times, the anxiety takes the form of panic.

i was inspired today to write about things that help me cope with anxiety. Of course, different forms of anxiety require different coping strategies. For example, my PRN medication doesn’t help with worry, but it does help some with panic. Meds aside though, here are the activities I can think of now to cope with anxiety.

1. Breathing techniques. I learned some in movement therapy a few years ago, but they usually made me dissociate. Now that I’m generally more grounded, in that I don’t dissociate as often anymore, I’ve found breathing techniques can help me calm my mind. I need to make sure I actually concentrate on my breathing or I’ll go hyperventilate just when I’m trying to relax.

2. Mindfulness. I particularly like the “body scan”. With this, I go from toe to head, concentrating on each part of my body and how it is in relation to other parts of my body or my surroundings (like the chair I sit on). I learned this in yoga a few years back and, like breathing techniques, it could set off some dissociation when done the wrong way. The key seems to be not judging my mind when it wanders off, yet getting my focus back to my body as soon as I notice. Not judging my body is also important. I shouldn’t be overthinking that pain in my tummy or how my feet are wobbly, but just register my body and how it feels and then move on.

3. Reading. Last year, I rediscovered my love of juvenile fiction when I first started buying eBooks on Kobo. I make sure I always have some teen fiction in my Adobe Digital Editions. Teen fiction usually is just involved enough that it requires some concentration and just light enough that it doesn't get boring or triggering.

4. Music. when I’m worrying, I like to pick out music that has strong or funny lyrics, so that I will be listening to them. I have some great German country music on my computer (I understand a little German). Again, it is just hard enough that I will want to concentrate on the lyrics but not so hard that I give up.

When I’m more in a jittery state, it helps to pick music that has a soothing melody, or more often actually music that I can dance to. When I choose music to dance to, I don’t listen to the lyrics, so I might as well pick one of my Latino music albums that I bought when I was into world music.

5. Exercise. Dancing, as I said, can help, but so can a work-out. We have some exercise machines on the unit, so I can go on the stationary bike or elleptical trainer. I don’t usually last long on either as I’m in terrible shape, but even a ten-minute work-out can greatly reduce my anxiety.

6. Writing. Usually writing helps me not to lessen anxiety, but to express it in a safe way. I am still looking for the right journaling program (and no, Notepad still doesn’t feel right). Blogging (as opposed to freeform journaling) however can also greatly help me structure my thoughts.

The List