Sunday, 30 September 2012

Medical things and no inspiration

Hey everyone. You probably noticed that I’m suddenly not blogging that much anymore. This is because I don’t have much inspiration. I had some medical tests, but I didn’t have enough to say about these tests to fill a blogpost. So I decided to wait, until I had some more things to talk about.

First, about my food supplements. Well yea… What I expected has happened. I got a bit more busy and I forgot about my food supplements several times. I also forgot to keep count of how much I got left and now I’ve ran out of one of them and the e-mail address that I need to mail to, to get my new prescription, won’t accept my mails. I’ll have to call the centre tomorrow, meaning that I’ll be without these food supplements a little bit longer. Oops…
I do feel that I’m processing my food better, which might be a good sign?

Like I said, I’ve had some medical tests. These were lung tests to be exact. There was something that I already knew, but became very aware of lately. When I’m with some sort of care taker (like a psychologist, or for medical things, or things like that) who I know, I have no problem looking at their face. (Face! Not their eyes! Usually it’s their forehead or something like that.) But when I don’t know the person, even looking at their face is a challenge.

When I look at someone’s face, I do see their expression and the eyes are in my field of vision, even though I’m not looking straight at it. Having this indirect contact isn’t that bad when I know someone, but when I just met the person, especially when it’s someone who needs to give me a lot of information (like someone in the health care), I have to completely look away in order to be able to focus.

Notice this last part of the last sentence please. “… in order to be able to focus.” Some people get really offended when you look away. (Don’t worry, these people who tested me lungs weren’t offended) When a person with Autism isn’t looking at you, it’s usually not out of disrespect. In fact, it’s so he/she can focus better. The eyes, or even the whole face sometimes, just have too much impact! It’s very distracting and any information given at that moment, just won’t stick. In fact, I made a whole guest blogpost about people demanding eye contact once, only the person I sent it to didn’t use the text yet and I’d feel bad using it now… But I just want to say I feel strongly about this. Please think about this text whenever you feel offended by someone not looking you in the eyes. This person might just be concentrating really hard on what you’re saying.

Back to the lung tests. I have received the conclusion of these tests. It turns out that I’m mildly asthmatic. This does explain some things, like how I easily get out of breath and even hyperventilate sometimes. It also explains the cough I’ve had for more than 6 months now and why my lungs are so terribly sensitive. A small part of me also hopes this explains (a part of) my fatigue… I’ve gotten medicine for this. I hope that’ll help. Let’s see where this takes me…

In the meanwhile I’m still on the board of the weekly Autism meeting, which I still like to do, and I’m still trying to get the Game Day for Autism going. This turns out to be harder than we expected, but we’re not stopping! I still feel strongly about this event.

Yesterday I went to the fair (kermis). I really like the fair, but the music is always so loud and there are a lot of people, so I can never stay too long there, which is a shame. My sister went in a big thing with a long arm that went really fast and high and in circles… Too scary for me. Then we went into the ‘Octopus’ together, which went faster than I ever remember it going. It was a lot of fun, but the iron bar in front of us wasn’t too stable, which made me scared of falling out the whole time.

After those two things the music and crowd already got to me, so I got myself a cotton candy and then we got out of there. I heard about a fair that’s made to be mild to the senses about a month ago, but it was too far away from me. I wish something like that would be close to my house too, then I can maybe spend some more time at a fair. That’d be nice.

After the fair, my sister and I did some shopping for the Halloween party at the weekly Autism meeting. I love putting together a party! I can’t wait!

Monday, 24 September 2012

The effects of Kansas

If there are people who are new to my blog: I have followed Aaron Likens his blog for so long, that I have taken over some words and terms that he uses. One of those is ‘Kansas’. It’s not about the state in America. Read in his glossary what it is about:

Last Friday afternoon I went to a long weekend of LARP. LARP is short for Live Action Role Play. It’s a real life role playing game, where you have your own character in another world and all sort of things happen and you interact with it. There is a (hidden, played out by NPCs) storyline, but the players have a lot of influence on this. I love LARP, it’s an event that’s as much a Kansas to me as an Anime/Manga event is.

The moment the game started, my head went clear and all I thought about was what the best strategy in the game would be and how to stay in character. Also, everything went easier and easier, as is usually the case within Kansas. Some psychologists have accused me of running away from real life. I don’t see it that way, as it’s not that I’m fleeing or anything. It’s more like why someone would take a holiday or take some time for his/her hobby, but then combined. I’m in a new place, away from the things that I have to do (not to flee, but to rest my head, like you would on a holiday) and I have some fun things to focus on, like you would with a hobby.

Things in the game went pretty good, as we had a relatively calm scenario and I had plenty of (fun) things to focus on. I truly feel like I just had a nice holiday and my head has cleared up. I’m tired now, but that’ll be alright with some rest. This was exactly what I needed! All those frustrations and stress I had last week, are gone. I feel so much better! After I’ve rested a bit, I can finally go back to focussing on the things that I have to focus on. I can’t wait for my next weekend of LARP! But I’ll have to wait half a year for that. That’s okay, I got enough to do.

Thursday, 20 September 2012

Not knowing

Lately I’ve been going through life on automatic mode and I seem to be on edge, making me respond more harshly to some things. This is because I have been in an uncertain situation for way too long. If there’s one thing I need, it’s knowing what I can expect. I don’t mean that every little change gets me in panic mode. In fact, I wouldn’t be able to put up events if that was the case. But I mean the big things that would bother anyone, bothers me a lot more.

It’s not just that I don’t know what to expect in life lately. This seems to be the story of my life the last couple of years. When I was in my 3rd year of secondary school I fully collapsed for the first time and had to go to a psychologist and had several tests done. I couldn’t complete this school year, because I didn’t have enough energy for school. (This is when my Chronic Fatigue was at its worst. I couldn’t do more than 3 classes of 45 minutes each day and even then I had a lot of sick days) I was very scared in this year, not just because of all the bullying, but because I had no idea what was going on with me and I didn’t know what would happen to my education.

In my last year of secondary school I collapsed for one and a half semester. This made me behind on my schoolwork so much, that it wasn’t until two weeks before the exams, that I knew for certain that I was even allowed to enter my exams. A little explanation: There are things like essays and certain tests and things like that, that need to be done before you’re even allowed to enter the exams.
If I couldn’t enter the exams, I would have to go to adult education and I was told that I wouldn’t be able to get the guidance that I needed when in adult education. This scared me a lot and, until two weeks before my exams, I had no idea what to expect.
Also, I had a lot of medical and psychological tests in this year. This took a long time, as they couldn’t find anything wrong with my body that would explain my medical problems. So this was also a very uncertain situation. Eventually I got the diagnosis “Asperger Syndrome”, which did help, but it didn’t solve my Chronic Fatigue completely.

After this I went to bakery school to become a pastry baker. Because I had so many sick days (school hours are just too much for me) and even felt bad at school and at my internship a lot, I couldn’t become a pastry baker, which is a level two education. I graduated as an assistant baker, which is a level one education, which is just one year and I didn’t need an internship for that. But knowing that I was sick so much that I couldn’t even hold an internship, I knew working as an assistant baker was probably out of the question too. So this whole year I didn’t know what to expect and even when I finally graduated, I still didn’t know what to expect in life.

My mentor sent me to a job counsellor. After all the information was put into the system, the computer came up with… Nothing. Absolutely nothing. We had to get some information out before it came up with something. It was DTP. I tried to get into the school for that, but the school was being SO difficult, that I didn’t know what it was really about, until introduction day. I actually disliked what it was about so much, that my whole body even responded with going from feeling absolutely fine, to getting ill. The moment I decided against the school, I got better again.

After this I did a lot of thinking and got counselling and things like that, and decided to try and get government profit, because I was out of options. (No, I didn’t write down everything we tried in this blogpost. It would’ve been way too long. But trust me, I had no idea what else to do) This turned out to be very hard, because I didn’t have the diagnosis ‘Chronic Fatigue Syndrome’. It turns out that to get that diagnosis, you can’t have anything else that can make you tired. Asperger Syndrome can make you tired. It doesn’t explain just how tired I am and most of my other symptoms, but just because of my diagnosis of Asperger Syndrome, I can’t get the diagnosis of Chronic Fatigue Syndrome.

With just my Asperger’s, I would theoretically be able to work. It’s just the combination of my Asperger’s and my Chronic Fatigue that makes it so hard for me. But seeing they can’t use my Chronic Fatigue, they had troubles giving me government profit. In the end they could give me government profit on account of my ‘load capacity’, meaning the amount that my body can take. But they still said I had to work for 20 hours a week and I just needed to be happy to have government profit at all. So I had to wait for this verdict for a long time, which got me very scared, because I seriously didn’t know what I would do without government profit.

The people from the government profit sent me to a jobcoach, who had the task of getting me a job within 20 weeks. I wasn’t too sure that would happen, due to my own experiences, but they said 20 weeks is a long time. Well, I don’t want to say ‘I told you so’, but… I told you so. They couldn’t find me anything, so they gave me an internship at their own office. After 2 months there, they still didn’t have anything. (Oh, by the way, if this seems like they were searching and I was just relaxing… That’s not true, I was searching very hard and I was applying for jobs too)

A job opening for light administrative work opened up at their office. I applied and was hired for half a year. They told me they weren’t allowed to hire me for more than half a year, so in this half a year I kept searching for another job. I didn’t get hired anywhere (more uncertain times!), so after these 6 months, they went to the company’s headquarters and managed to get me a job there. At this job they weren’t as forgiving for me having so many sick days, and I didn’t even get through the trial period.

Five (!!) months later I managed to get a job as an assistant baker. Well, if you’ve followed my blog you’ll know how that worked out. If you didn’t, I got fired for not being fast enough and having too many sick days. Here’s the link to the blogpost about this:

After this I was told I should work on my health. The people from the government profit granted me half a year for this. The deadline ends this December. So, this is where I’m at right now… I’m working hard on my health. I have lots of appointments with doctors and I’ll be applying to get back at my old psychologist again. Out of all these appointments, at the moment the food supplements and the lung tests seem to have the most hope in them. But if those things don’t give anything helpful, then… I don’t know. I have absolutely no idea. I don’t even dare to plan more than one month ahead, that’s how uncertain things are.

Those dreams about becoming a pastry baker, or an actress, or to do things in events? I can’t even dream them anymore… (I’m actually tearing up as I write this) I just don’t dare to let myself think of things like that, as it just hurts me to know that I might never be able to work. I can maybe do things as a volunteer, that’s a comforting thought, but still… I have been dreading to write about this in my blog, as I don’t want anyone to get discouraged. These problems are mostly due to my Chronic Fatigue, not due to my Asperger’s. If you have some form of Autism, don’t get discouraged because of me. There are plenty of options with Autism. Also, if you’re Chronically Fatigued: Chronic Fatigue comes in different severities and you’ll also have different opportunities in life. Don’t give up because of my story please.

As for me… I’m not giving up either, I’m still fighting, but I must say I’m at a bad place emotionally now. I have no idea what to expect in life and to maybe have to give up my dreams… I can’t even make new dreams... It’s tearing me apart.

Saturday, 15 September 2012

The need for processing time

Let me just start off by saying that I passed my medical driving test! This means that I’m now officially allowed to enter the driving exams. So, time to study for my theory exam. I’m a bit scared for that exam, because I’m having difficulties with studying. But put that aside, because right now we should all be happy that I passed my medical exam! I haven’t gotten an official letter about it yet, but it’s probably good for three years! Whoo!

After my medical driving test, though, my head was aching and felt really heavy. At first I was just happy and cheering, I was in complete party mode! But after about two hours my adrenaline from being so happy went away and suddenly I felt how tired I was and how much my head was hurting and feeling heavy. I went right to sleep. Afterwards, I kept having a headache and a heavy head and I just couldn’t concentrate.

I tried to relax, but the three appointments I had the next day were on my mind. I needed to go to the lung doctor, the general practitioner (I looked this word up. If it’s wrong, here’s the Dutch word: Huisarts) and to get a massage. Because I still had all the information for the medical driving test in my head and was also trying to prepare for these three appointments, while being very tired, I got in an overload of information.

It wasn’t until all these appointments were done (and the massage was done at 9 pm (21:00)) that I was able to relax a bit. My head cleared up a bit… and then I forgot my food supplements in the evening because I forgot the time (and went to bed way too late). Here we have the first time that I forgot it. I hope this won’t happen too much. Up until now I must say I’m pretty proud of myself. I’ve started last Tuesday and only forgot about it once.

Today my first appointment was at 4 pm (16:00) and I decided I wouldn’t do anything up until then. I didn’t have a single day without any appointments this week, so I decided that I earned some rest. In fact, I didn’t just earn it, I needed it. My head was full and I needed processing time. When my head is full, I can hardly remember anything and I keep forgetting simple tasks. Do you know the feeling after a whole year of school? That end of the year, about two weeks before Summer Break? You do everything that you have to do, but actually your head is full and you’re in a need for a big holiday. People can try and teach you new things and you’ll try your best to get into it, but actually all you can think about is Summer Break.

This, to me, is what a mild information overload feels like. Whenever I feel like that, I know I need to have some time without any appointments or other things that I MUST do. Actually, I need some processing time. Some me-time. When you look at me, it seems like it’s just some time to play games on the computer, or browse on the internet. The only reason I do that is to occupy myself so the information in my head won’t drive me crazy, but to not occupy myself with something that just causes more information overload.

So I choose to do something simple that I feel like doing at that point in time. This can be watching a movie, playing a game, browsing the internet… Sometimes, when the overload is just a little bit worse, I spent an hour or two laying in bed, looking at the wall. It’s not that the wall is that interesting, but just that my head is way too occupied to do anything else at that point in time. That’s okay, I’m actually really busy while looking at that wall. I’m busy processing my day. I’m not specifically thinking about something, but my head is just exploding with information and needs to calm down.

After it has calmed down, my whole body relaxes a lot more. This is also needed to preserve more energy in the long run, because an overload can drain me from all my energy. So contrary to what some people believe, processing time isn’t just another word for wanting a free day to rest up a bit. It’s actually some time that’s highly necessary to be able to function in life again.

Right now I feel a bit better than before, because I had a few hours of processing time. My headache is gone and my head doesn’t feel as heavy as it did. It’s still not enough though, I’m not back to my old self yet, but I’m running out of free days for processing. But, even though I do have some things to do tomorrow, I don’t have to take in a lot of information. So that’s good. I’ll be fine.

Tuesday, 11 September 2012

Medical driving test and food supplements

Sorry for not having blogged for a few days again. I’m focussing on my driving test and food supplements at the moment. With ‘driving test’ I don’t mean the official exam. Here in the Netherlands, when you want your driver’s license while having something that might make it more difficult to get it (something psychological or medical), you have to fill in a form. If you say ‘yes’ to one or more of the things on the form, you have to do some tests depending on what you answered ‘yes’ to. This driving test that I have to do is a medical driving test to see if I can drive a car while having Asperger’s. They test on things like dividing my attention and controlling the car and things like that.

I have done a test like this before, but that was after having a horrible driving instructor and not enough practice (my driving instructor told me that there was no need to practice for this test, that they would just see how you handle being in a car… This wasn’t true). This time I’ve had a lot more practice and I’m allowed to try again. Of course, they don’t let you do these tests indefinitely, at some point they need to get to a conclusion, so I really want to pass this test this time! If I pass this test, I’ll go on to focus on studying on my theory, so I can do the theory exam. If I manage to pass that, I’ll try to get my driver’s license with a practical exam.
But for now I’m focussing on this medical driving test.

As for the food supplements; I have spoken about my troubles with those in this blogpost:
If anyone is still wondering: Those pills aren’t for my Asperger’s of course. They are for my Chronic Fatigue. We’re trying to figure out if I’ll feel better with any of those food supplements.

Today I finally started with the food supplements. Having to take nine food supplements in the morning is a huge task! It took me two big glasses of water and thirty minutes to wash them down. My mother helped me sort the pills for each day and each part of the day. I also put an alarm on my phone for each time that I need to take my pills. The combination of this seems to help. For now at least.

At the moment I’m right on schedule with the pills, but I’m not celebrating yet. Today all I had planned was a driving lesson. It’s not that difficult to think about the pills when there’s just one thing distracting me. Let’s wait until I’ve had some busy days with lots of distractions. Let’s see if I still remember the pills then.

So that’s what is going on at the moment. I also made some appointments with some doctors later this week, but that’s not really the first thing on my mind right now. Medical driving test and food supplements first. Then I’ll see about the rest.

Saturday, 8 September 2012

Something smells...

Just a few minutes ago I woke up from a nap and the first thing I noticed was a delicious smell entering my nose and filling my whole body. My father is cooking something with lots of ingredients that I love. I don’t know if I love the meal yet, he wants to keep the menu a surprise. I do know that it smells delicious. He has used some wonderful spices… If it’s up to me, he can just keep on cooking, just for the smell of it.

This is what happens when something smells very nice. I smell it from far (from my bedroom in this case) and I can enjoy it a lot. In fact, right now I can still smell my father’s cooking as he’s still busy with it, and I love every breath I take through my nose. Want to make me look forward to your cooking? Use some strong smelling herbs. (Except for mint! For God’s sake, don’t use mint!)

However, there’s another side to this strong sense of smell of course… I already dropped a hint at the end of my previous paragraph. Not all scents in the world smell that nice. Most people will now probably think about things like ‘poo!’ and ‘sweat!’ and things like that. Well… Yes… That too. But I also have a few scents that I strongly dislike that might surprise you. I’ll name the two scents that surprise the most people, one of which I already dropped a hint about: Mint and deodorant.

This is very annoying, as these smells are considered nice and even a sign of hygiene. This works two ways: If I avoid these scents, people tend to think that I’m not that hygienic. Other people use these scents a lot for hygiene, so avoiding it is hard too.

So what do I do? I have deodorant that doesn’t smell that strongly, doesn’t have perfume in it and it’s a stick. Not a rolling stick as most people have, but it’s a kind of crème in stick form. The downside to this? They’re not selling them anymore… Time to try new things… (ewww, new things!) Also, I ask others to not spray deodorant too close to me, that’s all I can do about my surroundings. If I get into a cloud of deodorant, or am standing too close, it results in me coughing a lot, like a person standing in smoke.

What if a person walks by who put on way too many deodorant (or perfume)? Erm… All I can say is: sorry for my coughing, I never try to upset anyone with it…
(Just ate dinner. In case anyone was wondering: It was delicious! Describing what it was would take too much time though, as my father invented his own recipe with many spices and things like that.)

About the mint… I can hardly avoid that one. To me, all toothpastes with another flavour (I don’t like the flavour of mint either) taste like vomit or chalk. So mint it is… Also, after going to a restaurant you are usually being offered some type of mint (usually peppermint). Of course I never accept it, but most people do. This is the worst if I travel back from the restaurant in a car with some other people who all accepted the mint. It usually ends up in the car filling up with the smell of mint, leaving me nauseous during the whole drive.
I have no idea how to successfully avoid the smell of mint…

You know what? I want to end this blogpost positive, as today was positive in the sense of scents. At the moment a fan is blowing in my direction and the wind has the smell of dinner in it. I love it! Today I was actually very cranky, but this nice dinner smell has lifted it a little bit. This is the effect that scents can have sometimes. When it’s a bad smell, it can be bad and even get me into an overload faster, but when I love a smell it can help make my day a little bit better! My favourite scent? Lavender.

Friday, 7 September 2012

Medicine, food supplements and routine

Right before leaving the Fatigue Centre, I got some food supplements. Oh sorry, did I say some? I mean I literally got a bag full. And I mean literally: a bag full.
After the Fatigue Centre I had my blood shot and quickly after that Abunai came around the corner and then my leg went in a complete cramp. Just doing the normal daily things was hard enough as it was with this leg, so I was first recovering from that for a week, before starting something new.

The last few days I’ve tried to figure out what things were needed to get my recovery plan for my fatigue moving on. One of these things was using the food supplements that I got from the Fatigue Centre. They gave me a food supplement plan for three weeks. If it catches on, we’ll see after that what we’ll do with this. At least then we know what it is that I need. If it doesn’t catch on… Well then that’s not it, right?

I sat down with my mum and had a good look at what I need to take in. Are you sitting down? Well, ready or not, here it is: Nine pills in the morning, two pills in the afternoon, five pills in the evening. A few of these pills in the morning need to be taken with breakfast. Those two pills need to be taken before 1 pm. These pills give me some more energy, that’s why they’re all timed. This basically means that I can’t ever sleep in. What if something happens in the middle of the night, robbing me of my sleep, so I need some more sleeping time? I know this sounds petty, but with my Chronic Fatigue, if I don’t get enough sleep, it can REALLY ruin a day. Also, I don’t have a job, so keeping a steady routine is hard enough as it is.

There’s another thing. I need to fix my eating times around my food supplements. Another thing that throws off my routine. I also have to remember taking this many pills in the first place. I’m used to taking pills in the evening and/or morning, but this many AND in the afternoon too? Another break-in in my routine.

I’m sure this all sounds really petty to most of the people reading this. I can understand that. I mean hey, if this is what I need, then I should simply do it right? Actually I totally agree with you, but my body seems to disagree with this.

As I’ve told before, with the whole Fatigue Centre thing, changing my routine is a VERY difficult thing for me to do. Just changing one or two small activities during my day is fine, but I’m talking about the big things. When I have to work my own schedule around something for a long time, this causes stress for me. This has always been the case. A new school? A week of crying (even when I’m looking forward to that school!). A new job? Complete stress and some crying too. All these things that cause most people some amount of stress, causes me to cry and freeze. My whole being just says ‘NO’ to it. Of course, I can apply logic and force myself to do it. This doesn’t make it any easier though. My body keeps refusing.

At one time I had to take some antibiotics three times a day. In the morning and in the evening went fine, but I kept forgetting to take the one in the afternoon. Did I just not care? Nope. In fact, every time I realised this in the evening I got really frustrated with myself. I simply kept getting back to my old routine without realising it and forgot all about the antibiotics.

This problem with big routine changes has actually been one of my most obvious autistic traits. I never noticed it, because I can handle small routine changes and a child gets offered quite some routine. But then I went from primary school (I never changed primary schools) to secondary school. I was actually counting down the days until secondary school, because I absolutely hated the time in primary school. The evening of the last day at primary school and the three days after that, all I did was crying. I couldn’t even properly explain why, because I didn’t know why myself. All I knew was that I was scared of something, didn’t know what as I was looking forward to secondary school, and that it caused me to be upset. Now I know that I was scared of the change in routine.

This is what happens with my medicine and food supplements too. It’s not that I don’t see that it’s important. In fact, it’s not that I feel it’s bad to take them either. I actually really want to take them and figure out if that’s the thing that I need. Still, I’m scared of the change and I’m not sure if I’ll be able to keep to that new routine.

Remember this if you ever see someone struggling with a new routine without being able to explain why please. It’s not always the lack of will. Rather talk to them and figure out together how you can make this change into the new routine easier.

I know this helps for me. I have to say that my mother and sister are being a great help in this. We were going over all the options on how to make this easier. We thought of maybe starting with just a few pills, but that doesn’t take away the times that I have to stick with and the pills were also dosed to fit in three days, so I don’t think that’s a good idea. We also thought of post-its with the amount of pills, when to take them and in what way (with water, melt it under your tongue, etc.) to take them. We’re probably going to do this. Next to that, I’ll probably also put a timer on my phone to help me remember to take my pills.

Having these options have calmed me down a bit, but it still needs to sink in. So we decided to start next week, so I won’t stress out too much. In the meantime I’ll keep busy with some other things that also need to be done to help my recovery, so I’ll keep on moving forward.
I’m sorry if this was a messy blogpost. I can’t really tell if it is at the moment, because I’m stressed out about this change of routine in the future.

Thursday, 6 September 2012

Double Trouble

There is something that I’ve been struggling with for a few months now. You’d think that two people with the same issues would get along well. Usually this is the case, because you can identify with each other and feel understood.

What if you both have problems keeping a casual conversation going? Suddenly you end up staring at each other, both wishing for the other to come up with something good. You can both understand each other’s issues, but you can’t even voice them and you just stand there wanting to connect in some way.

This is what I’ve been going through with some people lately. Usually I’m pretty good with keeping up a conversation, but that’s when I already have something to talk about. But lately I’m meeting a lot of people who have a problem with keeping up a casual conversation and they aren’t Anime/Manga fans or help put up an event or LARP something else within my interests… What do I talk about then? This is the reason I rarely make friends outside of my interests. I can hardly keep up a casual conversation about anything else.

Usually I rely on the other a bit to come up with a good question and I’ll just go with that to try and keep the conversation going. But what if the other person has social issues too? What if the other person also relies on the other person? Then we just sort of utter short sentences and eventually end up with an awkward silence… This is a very painful situation.

At Abunai someone tapped me on my shoulder. I turned around, ready to either greet a friend or help out a visitor, just to stare at a mask. This person had a costume on with a mask with just one hole in it and he/she just stared at me… I have no idea if this person was pulling a prank, trying to get me to recognise him/her, or was socially paralyzed.

I know I was socially paralyzed though. I tried to connect by saying “Can I help you?” so that if I was supposed to know this person, he/she would maybe say who he/she was, or this person would state his/her question. But nothing. This person just stared at me. I still have no idea if this was a prank, or if this person was socially paralyzed. I ran through all the possible sentences in my head, but couldn’t come up with anything. I had nothing to give me a clue, except for that one hole, but I wasn’t about to stare someone straight in the eyes. That was impossible for me. So for me, this was just one big mask shielding me from that person. I have to admit I just said “Okaayyy…” and walked away.

I hope I didn’t offend anyone with this. If you’re this person and you’re reading this: I’m so sorry! I had no idea what to say or how to react. I’m not offended by you in any way.
If you weren’t pulling a prank, then it might be that you were as much frozen as I was. If that’s the case, then I’m sorry if I made it worse.

But this is a great example of what happens when I can’t rely on the other person to lead the conversation anymore. I may seem stand-offish and maybe even rude, but I don’t mean to. I simply freeze because I have no idea what to do, and anything I come up with just seems wrong. Freezing seems like the only option, because if I say nothing, at least I don’t say anything wrong. But freezing isn’t the right option either, I know that. I just don’t know anything better to do.

Wednesday, 5 September 2012

Paralyzed by sound

Although Abunai was amazing, you can’t expect 5 days to go perfect. Also, although my problems don’t seem to be bugging me as much as normal, that doesn’t mean that they don’t exist. I want to use one of these small moments as an example to explain why I never attend discos.

During the two hour SuperGopher meeting, we were walking around the convention so one of the Staff Events could tell us what was needed from us in the different rooms. At one point we arrived at the main stage where they were doing a sound check. Normally I can take that for a few minutes and since we were just passing by for a short explanation, I followed everyone inside without giving it too much thought. I wasn’t prepared for this though…

After taking a few steps inside, they suddenly decided to check the bass. This wasn’t checked by putting up some music with a bass sound in it, but just by purely using a bass guitar. I never join discos because I can’t handle the loudness and the bass. The bass is the worst of the two. This wasn’t just a song with a bass in it… This was a pure bass sound and loud too…

It went right through me. It’s hard to explain this feeling, but I will try to explain it. Ever stood so close to road workers, or a VERY loud concert, that you can feel the ground shake and feel it all through your body? Well, magnify this by a hundred and then add some pain in all your muscles and the inability to speak or move.

When I’m at a disco I usually feel terrible too, even get a bit nauseous if I stay for too long, it drains my energy, my mood instantly drops and my muscles tense up. But this pure bass… I’ve never felt anything like this before. I didn’t just tense up, I was paralyzed. I just stood there and I wanted to scream “TURN IT OFF!” but I couldn’t. I had to wait until it was over. Also, the rest walked on and didn’t notice anything, as I was walking behind everyone. I quickly ran back to them afterwards.

In reality all of this just happened for a few seconds, but it didn’t feel like just seconds to me. This is what a bass sound does to me. Normally, when it’s hidden within a song, it’s not this extreme, but if I have to be in a disco for a longer time, it does make me feel awful. The feeling the sound of this pure bass gave me explains why a bass hidden in a loud song in a disco can have terrible effects on me in the long run.
My sister told me that I should try and put in my ear plugs in the disco next year. I might just try that and see if that makes it better for me.

Tuesday, 4 September 2012

Abunai - 3

This is the third of the three blogposts about Abunai (the biggest Anime/Manga convention in the Netherlands). You can find the first part here:
You can find the second part here:

The next day I handed in my wheelchair, because I could walk again. I was still very weak and I couldn’t walk for too long, or my leg would cramp up again, so I just walked a tiny bit and then sat down again to rest up. That was good enough to do my duty, as there were enough places to sit in-between on my way to my section for that day. In my section there were also plenty of chairs. This meant that I could be of much more use, as long as I made sure to sit in-between walks and rest up on times that I wasn’t needed.

Now read back… I didn’t say ‘my section for SuperGophering’, I said ‘for that day’. Now, what do I mean by ‘that day’? On Sunday I had a Japanese bread baking workshop to give with one of the Staff members. We’ve given this workshop together last year too, which went great, and we couldn’t wait to give it again! Our workshop was completely sold out and it went great. There’s nothing that I would’ve changed. Both us and the visitors had a great time! There were even a few visitors sticking around afterwards to ask some more questions and/or just have a small chat. Even cleaning everything up went much faster than last year. I also had plenty of moments where I could sit down while still being very useful.

Feeling on top of the world (but a little tired), I went to my room to put some stuff away. Then I went on my way to the entrance to hand out the bread, that the Staff member who I worked with baked while I was cleaning up. The way to my room PLUS the way to the entrance was longer than I thought. I miscalculated in resting up and got to the entrance quite exhausted. Because of this I wasn’t quite aware of the people around me and a misunderstanding quickly escalated to some annoyances. After some talking it over, we sorted it out. I’m sorry! This person probably knows who I’m talking about. I’ll make sure to properly rest up the next time.

After we said sorry to each other, I was in a better mood again and I went on my way to the ending ceremony. Some part of me knew that Abunai was about to end, but since I was still in the middle of it all, I didn’t really feel it yet. In fact, I would be staying there until Monday, so it wouldn’t be over for another day for me! The ending ceremony ended, as is tradition, with a big picture of the crew on stage, and after that most visitors went home, so the usual hugging goodbye commenced.

After that, the hotel soon cleared out. It was strange seeing a building, once so alive, suddenly so empty. You’d think that I would’ve gotten used to that by now, but I don’t think I’ll ever get used to that. I had some mixed emotions, as I needed my rest a lot, but I would also miss Abunai. I was absolutely exhausted, so I rested up for an hour in my bed, while my sister drove someone to the train station.

After my sister came back, we went to have dinner and then we headed to the Gopher Lounge. This is the place where Gophers can eat, drink, talk and rest up before, during and after the convention. The Gopher Lounge wasn’t just full of some Gophers who were still around to help with cleaning up, but also some Staff members, Stewards and friends. Almost all of us knew each other and we were basically a group of friends talking about our convention experiences. We had a lot of fun.

Eventually we were all needed for cleaning up and we all ran (shouldn’t have done that! My leg! It hurt!) towards the place where we were needed with a good friend of ours in front with a cavalry tune coming out of his Ipad and the Steward Manager next to him with a megaphone, screaming “CAVALRY INCOMING~!” This was very funny! My leg didn’t agree with this, so in the end I could hardly help (stupid me), but it was worth the fun.

That evening we all hung out in the bar as one big and happy group, sharing some more convention experiences and sharing a lot of laughs. I also had some serious talks with a few people, but after that I had some more fun! That was truly a night to remember. I can’t wait for next year! Okay, I can wait a bit, I need my rest, but a whole year? That’s just too long! I’m sure the Staff doesn’t agree with me though, as there’s plenty to do for them the whole year around. Good luck everyone!

The next day we had breakfast with the remaining group and had a pool party afterwards with a part of that group. The pool was great on my leg. Afterwards everyone went home, except for my sister, a friend who was going to travel back with us, and me. I paid for a late check-out, which I was now grateful for, as I didn’t want to leave yet. The three of us rested up a bit. The combination of the pool and the resting got me enough energy to help clean up the hotel room. Then we went home.

I’m already missing Abunai and am pretty down about it. I miss being around my friends, I miss feeling useful, I miss feeling like I can take on the world… I miss Kansas. (again, the definition of Kansas: )
Most of the people who go to conventions (or who know the feeling of Kansas) know this feeling. Us convention-people call this the after-convention-depression. It’s okay, it’s positive in a way. Every high has a low. Having something to miss THIS much, just means that there’s something WORTH missing this much, which basically means there’s something great in my life. I wouldn’t give this up for the world. On to the next convention!

Monday, 3 September 2012

Abunai - 2

This is the second of the three blogposts about Abunai (the biggest Anime/Manga convention in the Netherlands). You can find the first part here:

Well, we all know what happened that night by now. If you’re new to my blog, this is what I wrote that night: and if you’re wondering how the health story continues, as I’m not writing it again, here it is:

So, the next day I was very depressed, because I felt pretty useless and my wheelchair was giving me problems and I didn’t know why yet. Also, I never used a wheelchair before, so I had to figure out on the spot how to use one. I wasn’t going to have Abunai pass me by though, so I stubbornly pressed on, had breakfast and got to my section. There I politely asked what was necessary and… Couldn’t provide it, because the Material Room was so far away, that I needed people to push me there. If people were going to push me there, they could also just get the materials themselves. I never felt more useless at a convention than I did there before.

Again, I wasn’t going to let Abunai pass me by. I could’ve just gotten myself to some lecture or workshop or something and signed off as a SuperGopher, but I felt the Staff was under enough pressure as it was and also, there’s a good reason I’m a SuperGopher. I’d be very bored as a visitor, not having anything to supervise and no problems to solve and things like that… Nope! Not happening! So I decided I’d just provide for everything that I could provide and would supervise when needed and get the event holders the right information. That way I only needed people when heavy material was needed, which wasn’t very often. The Staff assured me that I was a big help, which put a smile on my face. My convention was back on!

This did tire me out very fast, so after dinner I just checked up on the last events that were in my section, then asked a Staff member to clear up for me once they were done. This was necessary anyways, as heavy stuff needed to be taken to the material room, so actually I didn’t ask for anything extra. Then I told everyone that I went to bed, as I was extremely tired.

After a few hours in my room, I enjoyed the night life of Saturday at Abunai! I always enjoy the Saturday night life at Abunai, as there’s a huge disco and some people also hold some small personal parties in their rooms and other corners of the convention. I never attend the disco, as I’m way too sensitive to the bass and the loudness of the music, but I do enjoy the happy people surrounding the disco. I also found out my ex was there, so we had a good talk. A few friends and my sister joined and we turned into a nice group and had a lot of fun and shared some laughs. After a while my sister and I got tired, so we went off to bed. On our way to bed we met the person who took care of my leg that weekend and I had her check up on my leg. She asked me to walk around a bit and I could! Not for long, but still, progress! Then we really went to bed.

Sunday, 2 September 2012

Abunai - 1

As I REALLY seem to have a problem with telling short stories, I decided to make my Abunai blogpost a 3-parter. This seems really bad, but remember that I have 5 days to talk about. I know, Abunai is just 3 days, but I was there from Thursday 'till Monday. So take into account that I'm talking about 5 funfilled days and suddenly it's not as bad as it seems.
The first blogpost will be about Thursday and Friday.

Finally here’s the long awaited Abunai blogpost. Sorry for the long wait. My leg has caused me some pain this last week, but most of all it took a lot of energy from me. Even doing the smallest tasks, like getting myself a sandwich, was a huge task, because my leg gave me problems again Tuesday, Wednesday and Thursday. Because of this I had even less energy than I normally have and this took a lot of my concentration, so I had to prioritise focussing on getting better and just getting through my days normally.

Last Thursday I went to physical therapy and had a massage (my physical therapist said I could just go to my massage without any problems). At physical therapy I got some tape on my leg, which helps my muscles to relax. This in combination with the massage really helped. I’m well on my way to recovery now.

So, enough about my leg. I promised an Abunai blogpost didn’t I? And I already told about what happened with my leg on Abunai, so I will try and focus on what I did at Abunai. My leg will be mentioned, as it influenced a lot, but I will try to mainly focus on what my days looked like.

My sister and I arrived at Abunai, or at least at the hotel where Abunai was held (seeing the convention would start on Friday), and after greeting some people and checking into the hotel, we went straight for the pool. After swimming for an hour, we dressed up, had dinner and went to the Gopher Meeting. Wait, Gopher Meeting? “What is a Gopher?” are some of you probably wondering now. A Gopher is a volunteer at an Anime/Manga convention who does a lot of different things, depending on where they have a shift. For example, when they have a shift in the wardrobe, they take in and hand out bags, jackets and Cosplay props.

Oh another word you might not know… Cosplay comes from Costume and Play and the simplest explanation (as a lot of people are still discussing this) is: “Dressing up as an Anime/Manga/Videogame character.”

Back on track. We went to the Gopher Meeting because I’m a SuperGopher Events… I’m not getting through this, am I? A SuperGopher is a person who basically supports the Staff with having their things run well, because the Staff can’t be everywhere. I’m a SuperGopher Events, so I get a part of the Events section to supervise and help the Gophers do their jobs there.

Now, seriously, back on track! My sister waited outside, because she’s not a Gopher. Afterwards we got a tour of the convention and my sister joined. After this my sister and I were getting in the convention mood and were also pretty tired. My sister went to bed and after hanging with two friends some more, I went to bed too.

On Friday I had a shower and breakfast and then it was convention time! I picked up my portophone (Walkie talkie… Radio… Whatever you want to call it) from the Material Room and Kansas was in full swing! (I sometimes use words from Aaron’s blog. For the meaning of Kansas, check his glossary here: ) The convention itself would open at 2 pm, but for me it had already started, as at 11 am I had a 2 hour SuperGopher meeting. After that I helped with putting some stuff up on the walls and getting some stuff ready.

Then the convention opened its doors! I went to my section, made sure everything went okay, and…!!! Was bored as hell. Ha, didn’t expect that one, did you? On Friday the section I had assigned to me only had two things and those two things basically ran themselves, so I only had to check up once in a while and that’s it. I went to see the Fashion Show, which was amazing, but that was all I had planned for events for that day.

I asked a Staff member if there was anyone or anything who/that needed help, even just a little, but there was nothing for me to do. Eventually my sister took me for the Karaoke, which actually turned out to be a lot of fun! I forgot how much I love Karaoke! After Karaoke my sister and I decided to go to bed.