Wednesday, 26 December 2012

Merry Christmas!

Merry Christmas everyone!

I'm having some much needed rest. I've gotten ill and I'm restless and I'm unable to concentrate, but I'm sure that's just the stress finally getting out.
I'll probably start to feel better soon and then I'll be ready for action again.

In the meanwhile I'm really enjoying Christmas! The first day of Christmas I've had a delicious meat pie for lunch and a wonderful turkey for dinner.

The second day of Christmas I'll be visiting family and have another Christmas dinner there.
Friday I'll be celebrating Christmas again at the Weekly Autism Meeting.

I'm really getting spoiled this week, haha! I'm obviously not complaining.

I wish everyone a wonderful Christmas. Winter is dark enough as it is, so take some time to appreciate the good things in your life. Those things can be as great as love, but also as small as a warm and comfortable bed. Also, everything in-between. Even in dark times you'll find a light somewhere.

Again: Merry Christmas!

Thursday, 13 December 2012

Made it!

I passed my test! This means that I won't have to do my special maneuvers at the final exam. I'm so happy!
With my negative way of thinking, I could only see everything that went wrong in the last lesson and I couldn't see this test go right. This, of course, was a self-fulfilling prophecy and the drive to the test and the practice in the neighborhood went terrible, as my nerves were distracting me. While driving on the parking spot of the examination building I broke down in tears from all the tension. My driving instructor allowed me to let it all out and comforted me a bit.

Throwing out all my emotions actually seemed to do the trick and the test itself went alright! Of course, not everything went well, but it went well enough to pass. I'm so happy! Upon arriving home I got quite hungry and made myself a nice meal. My mother put up some Christmas music and now I'm simply enjoying having passed the test.

The rest of the family is obviously very happy for me. Also, my sister got the package she was waiting anxiously for today and she also heard she passed a test for her administration study too! (Congratulations sis!) So the mood has lifted a bit at home, which also relieves some tension for me.

Next week I planned to have a week off. Only on Thursday I have a busy day, because there were some urgent appointments, but the rest of the week is free. I'm going to fill that time in any way I want. That's my time and I'll see how I'll spend it. I can really use that time off. Let's hope I have some more positive things to say in my blog that week!

Tuesday, 11 December 2012

Fun and annoyances at the same time

Soooo... I have no idea whether to make this a positive blogpost or a negative one. Let's start out with the positive.

Last Friday Chill Aut (the Weekly Autism Meeting) had its one year anniversary. Of course we celebrated this! We had lots of food, a nice workshop and other things to do, a speech, decorative balloons, etc. Everyone who was interested was invited! I had a great time.

The day after that (Saturday) I went to the MidWinterFair. I go there every year with my mother and sister and this year was no different. My best friend was also tagging along. Like every year I had a blast. I got to watch my best friend's brother, a friend of mine and another person do a story telling, which they were great at. There was also a ceremony which I attended. Between all of this I visited many shopping stands and got myself a pair of arm sleeves and a new bag. I also enjoyed some nice food, which matched the theme, which they always sell there.
Friday and Saturday were great!

Of course, as is always the case, fun days take their toll just a little bit more with me. But I calculated this in my planning, so that's okay right? I'd just do nothing the whole Sunday, so I'd have plenty of energy to calmly get some stuff done on Monday again. Great planning right? Wrong. My sister and I had to clean up the house and there was tension in the atmosphere at home. I was still very tired, so I couldn't do much, but while being this tired, having to do things on a day where I planned to do nothing so I could rest up was already too much.

In conclusion, on Monday I was still pretty tired. This caused for my schedule to fall apart. I couldn't do much on Sunday, but that little bit was already too much and now my Monday was ruined too. How would I be able to get anything done like this? I tried to get some stuff done on my laptop, while playing a game once every hour or so to avoid overload (I always get overloaded with information sooner when I'm tired). This seemed to work, but soon my laptop started having issues again. Bye bye back-up planning.

Oh yea, I forgot to mention that. My laptop got back from repairs. Apparently they had to format (whipe) my hard disk in order to fix it. In other words: I lost everything. When I contacted them they told me I should've made a back-up and that this was mentioned in their mail. Their mail was huge and I had a few very busy weeks...

My father was nice enough to help me fix my laptop, but this took up all evening. So I struggled with my laptop all afternoon and my father was fixing it all evening.
I decided to go and work on my homework for my driving lessons, as I didn't need a laptop for that. I tried to use the television as distraction in-between to avoid overload. This somewhat worked, but I could hyperfocus on my game, but I couldn't hyperfocus on the television as much. Also, I seemed more available to talk to in the eyes of the rest of the family. This just caused for more information and more overload. Of course they can't be blamed, as I can hardly tell them to shut up and my tv remote in my room has broken, so that wasn't an option either.

So... I didn't get much done, I'm still tired and I have a busy week ahead again. On Thursday I have my 'Tussentijdsetoets' (a test where you show a few special maneuvers when driving. If you pass this, you won't have to do this part on your practical exam. If you fail it, you will have to do them on your practical exam. So you won't have to re-do this test, but of course I still want to pass it).

What is also not helping all of this, is that I don't seem to get along with my new psychologist. This has to improve soon, or I'll ask if I can get my old psychologist back.

So, I had two great days, but they were closed with two terrible days and I don't expect the rest of the week to cheer me up, as I'll be stressing out about Thursday.
Let's just focus on Christmas... Right? (I LOVE Christmas!!!)

Sunday, 2 December 2012

A busy week

Last week I have been terribly busy, so I decided to make a blogpost about something about my Chronic Fatigue this time. There were many appointments for my health (physical therapy, dentist, massage and psychologist), I’ve had a driving lesson, I went to pay a visit to a friend in the hospital, had a meeting with the board and volunteers for the Weekly Autism Meeting, had my broken laptop taken to be repaired…

So Thursday evening, after having had two appointments already, my sister, two friends and I went out to see Rise of the Guardians in the cinema! Of course, this was a terrible decision for my health, seeing I was way too tired. But I didn’t care. I needed some fun time after all these appointments.

Well, we had fun alright! In fact, we had so much fun, that my sister and one of those two friends (he was dressed up as Jack Frost) went for a photo shoot! By the time we were back from the cinema and ready for the shoot, it was already 11pm (23:00), so the second friend went to bed. She had to work the next morning. I went along with the shoot, so I could assist my sister by holding a reflector screen.

We had a lot of fun! We laughed all the time and I didn’t want the evening to end, as I badly needed such a great night.
My Chronic Fatigue was yelling out to me, telling me that I crossed the line. Now, most people would be very tired. In fact, this friend and my sister told me they were quite tired too. Only when I cross the line, I have to watch my health. But I decided not to care that night. I had too much fun and I didn’t have much else planned after that night. And having to end that much fun after such a busy week? Happens too much to me. I didn’t want to do that again. So I continued.
To my friends and sister: Don’t feel bad. This was my own decision and I don’t regret it one bit!

Friday I was pretty tired, but still had to do some small things. But small things are bad enough when I cross the lines of my energy. Today I slept until… I can’t remember! I thought it was 1pm (13:00)? And then I slept some more during the day…
You’d say I must feel pretty rested after all that sleep right? I thought so too, so I promised to cook dinner.

On a side-note: Dinner went amazing! I made nasi (a rice dish) and it turned out great! I’m very proud of myself. It’s not like it’s the first thing I ever cooked on my own, but it IS the most difficult dish I ever cooked on my own. Yay!

Back on track: When I was almost done with making dinner, I felt that my face was getting a bit warm. I thought this made sense, as I was hovering above a hot pan the whole time. But my sister told me that my face was red and both my sister and I know this is a sign of really having crossed my lines too much. At that point it’s either ‘stop by myself’ or ‘my body will feel so terrible, I’ll be forced to stop’. Luckily I was just about done with dinner, so I could just sit down and enjoy my meal and then rest on the couch.

Like I said before though: I still don’t regret Thursday evening/night. I had a lot of fun and I needed that badly. Most of the time I do try and make sure I don’t cross the lines with my energy. It’s important that I watch my health. But sometimes Chronic Fatigue just gets really tiresome (pun intended). Sometimes I just want to forget it for a moment and have some fun. I know that I’ll have to pay for it later, but I don’t care. If I always cut my fun off for my health, life just gets terrible. I’m 21, of course I want some fun in my life sometimes too.
So yea, sometimes I decide to cross the lines of my energy and sometimes I don’t. If I ever decide not to cross the lines and cut the fun off, please remember what I just told you. I have to pay for it the days after. When I have important things to do the days after, I simply can’t cross the lines.

As for last Thursday? Loved it. Needed it. No regrets.

Friday, 23 November 2012

Workshop - 2

I think I published my previous blogpost a tad too soon. The workshop was about PGB (PersoonsGebonden Budget. It’s a budget you can apply for if you need a lot of health care in your life, which can cost a lot of money). When I applied for the workshop I imagined they’d tell us what PGB is and how to apply for it and then have some exercises to learn how to fill out the forms and how to keep up with your budget.

Well, it wasn’t like that at all. It wasn’t really a workshop, but more one big presentation of 2 to 3 hours with lots of sheets with information with numbers and rules on them. It was like a crash course without any breaks. Unless they had one after I left…

Left? Yep. After a while (I lost track of time. I’d say 1 hour or so?) I got flooded with too much information and had to leave, while crying. I know, I cry a lot, but that’s my way of expressing emotions. One person yells, the other screams, the other punches a wall… I cry.
Anyway, I left the room and took the sheets with information with me for me to look at later in time.

So, what happened? There was simply too much information to progress in a short amount of time. You know that feeling when a school year has nearly ended and you can hardly focus on your homework, because the feeling of needing a big holiday gets bigger and bigger? It’s that, times a thousand, achieved in just one hour.

They kept jumping from one subject to another, laying out all the rules, giving us a lot of numbers, telling us everything you will need to do to manage the budget, making us do some math exercises to practice, etc. At one point in time I said “I’m getting pretty discouraged by all this.” To which they simply replied “You’ll be fine after some practice.” Later in time I said again “This is really a lot for me!” To which they said that I could just buy a cabinet for all my administration and I’d be fine. I already mentioned my Autism, but nobody seemed to catch on. I don’t know how familiar they are with Autism there…

So even after saying that it’s a lot for me, they kept on going with more and more information. At one point I even put my hands against my ears, in order to have some quiet progressing time. This helped to some degree, but then I realised I missed some information because of this and the amount of progressing needed to get back on track, was enough to fill my head again. I just needed a break…

After a while I couldn’t focus anymore. I heard the words that were being said, but they didn’t get progressed. This is when I decided I was better off just leaving and to look at the sheets later. I tried to state this to the group as calmly as I could, but my whole system was shaken and I couldn’t control my emotions and broke into tears while saying that I had to leave because of the amount of information and I left.

A lady followed me while I was putting on my jacket in the hallway and gave me some advice where I could get guidance for the PGB. I was familiar with the foundation she mentioned, so I could remember it. After that I told her I couldn’t hold on to any more information and left. I’m glad they were all so understanding when I left. I just wish they caught on sooner. But maybe I should have just said “I need a break.” Instead of that it’s too much. Why do I always realise this afterwards, instead of when I need it?

Wednesday, 21 November 2012


While I'm writing this, I'm waiting for a workshop to start. There are around 20 people waiting too and most if them have started a conversation.

The person left of me, the person right of me and I are silent though. I would like to start a conversation with them, but after a few attempts I gave up and am, instead, writing this blogpost on my mobile phone.

I wonder... are these people maybe not interested in a conversation? Do they have social issues like me? Do they have trouble connecting too? Do they maybe think I'm weird or something? Why is the rest having a conversation and I'm not?

Oh I just got spoken to and I answered with a short answer and went back to my blogpost. It's me after all. I have no idea what to say to these people.

Usually I have few problems with my autism, but this is one of those few times that I do have a problem with it. Well the workshop is almost starting, so I'll be signing off now.

Sunday, 11 November 2012

Theoretics exam and my birthday

The last two weeks have been exhausting, as I’ve been focussing a lot on my theoretics driving exam and my birthday. In fact, it has been so exhausting that my physical resistance went down and now I’m a bit under the weather. I think I’ll be fine if I just rest up a bit though. Fingers crossed.

Let’s start with the thing that was the most nerve wrecking for me: my theoretics exam. Some of you already know, but here’s the result: I PASSED!!! YAY!!! I never expected for me to pass this exam the first time! I thought I would need a second time for that to happen. I did make a few mistakes, but still, I passed!

I got to say though: I don’t think I would’ve made it if I didn’t have an individual exam. The whole exam there was a lady sitting next to me to assist me if anything about the exam wasn’t clear to me and to help me silence the nerves. In the first part of the exam I had to look at a situation and say whether I would need to slow down, stop or do nothing. While practicing this on my computer, the text of the question (“What do you do here?”) distracted me a lot from the situation itself, causing me to lose essential time. Of course, this wouldn’t happen in real life. Text from a question wouldn’t distract me. I would simply assess the situation at hand.

Because of this I was very stressed out. I didn’t think I would make this part of the exam and was told beforehand that I wouldn’t be getting extra time for this to make up for the text-problem. This felt unfair to me, as it wasn’t exactly the same situation for me as it was in real life. During the exam there was a great surprise! Apparently they removed the text, as the question would be the same for each picture anyway so I would understand that, and I could concentrate on the picture alone! This helped a lot and suddenly the time wasn’t as much a problem as it was before.

The rest were questions on general knowledge and they DID give me extra time for that, as the first part of the exam already tested my response time. The second part of the exam also had more text in the questions, so I really needed the extra time to really understand what was being asked of me.
This was great! Finally I could calmly read the question, allowing me to quickly respond with the answer afterwards. When I was sure about my answer, I would tell the woman sitting next to me and she would continue to the next question.

This was a great way of still making sure I have the right knowledge and the right response time on the road, but also keeping in account that I take a little longer taking in information. This calmed me down so much, I didn’t panic and the answers came more easily to me. This just goes to show how much understanding and adapting is needed. Of course they needed to make sure I would be safe on the road, but within these limits they made all the right adaptions. It really helped!

As for my birthday; I don’t have much to say about that. It was a lot of fun! We went bowling (where the music was loud, but not too loud) and had dinner at a restaurant (which wasn’t really all that bad, but I know of better restaurants… I won’t be going back there). I’m not that great at bowling as I don’t do it that often, but I had a personal record (70) which I’m proud of.

I had some great presents too! There were bento stuff (Japanese lunchboxes), money, birthday cards, some sweets, etc. Thank you everyone! Next to the bowling and the restaurant we also played some games and had some of my home-made cookie sponge cake. I was very proud of that cake, as everyone responded with a ‘hmmmm!’

On the day of my actual birthday I had a driving lesson, where I got some Belgian chocolates from my driving instructor. Later that day I had physical therapy, where I got a backpack with some goodies in it for my birthday. Thanks to the both of you! It’s very much appreciated!

So yea, I had a lot to celebrate. It was a lot of fun, but it also took a lot of energy out of me. That’s why I’m only writing about it now. It was all worth it though!

Friday, 2 November 2012

Receiving (the wrong) presents

There’s something that I’d like to talk about, seeing I’ll be celebrating my birthday the 3rd of November. (my actual birthday is the 6th of November) This thing is receiving (the wrong) presents. I don’t mean to scare anyone off with buying presents for me. Please, I’m happy with anything that I get, because you’re the one who bought it for me. I just seek understanding for something that I’ll explain in the rest of my blogpost.

I’ll explain this by sharing an example. One day a friend of mine (who I’m not in contact with anymore) got me a necklace. The necklace was put into a very nice wooden box, which was hand-decorated with a character from an Anime (Japanese cartoon) that I love and I actually Cosplayed (dressed up) as the main character. I loved the personal touch, but I have to be honest… I never wear jewellery, because it gives me a terrible sensory problem. I always feel it and I can’t ignore it. If you ever catch me wearing a necklace, it’s probably a really big and classy party and my mother has probably forced me into wearing one.

This friend told me that he really wanted to see me wearing his necklace. I told him I never wear jewellery as it’s a sensory hell, so that I couldn’t wear his necklace, but that I was forever grateful for getting it and would cherish it. He wasn’t happy at all and told me I was rude for just laying his necklace aside to sit in the dust.

That is totally missing the point! I wasn’t trying to be rude and I wasn’t laying the necklace aside to sit in the dust either. In fact, I still have the necklace and still think it’s beautiful. I just can’t wear it. I’ll never ask for jewellery as a present, as I’m unable to use it.

One other time I got a piece of clothing that wasn’t my style at all, but it was from a big designer, so the person giving me the present proudly expected me to be very happy and asked me whether I would proudly wear it. I can honestly say that I’m happy with any present I get. Just the fact that someone went as far as getting me something with the sole purpose of making me happy, already makes any present I get a good present. It’s just when I get something I can’t use and it’s being expected to be used, I have no idea what to say. I’m a terribly honest person. I can talk around indirect questions, but when being asked something so specifically as whether I would use something that I most likely won’t, I have no idea what to say.

No, I won’t use it. Yes, I’m very happy and grateful that I got the present. Most people don’t seem to understand this. Somehow, for some reason, it’s an insult not to use someone’s present which is meant for using, even when it’s something you would never normally use anyway. I don’t get this. Am I supposed to lie to you when I get something I can’t use? Am I supposed to say I will use it, when I won’t because I can’t? And is it really so hard to believe that I’m genuinely happy with your present, even when it’s something I can’t use?
These are questions that I’ve never gotten a clear answer to. I don’t get the etiquette of getting presents.

But anyone who has ever gotten me a present, and anyone who ever will: If it just so happens that you got a present that I can’t use for some reason, don’t feel bad. I’m honestly happy with the present and will keep it. So if you ever ask if I will use your present and I tell you no for whatever reason, please remember that I’m just very honest, but that that doesn’t mean that I’m not happy with it. I am, rest assured.
Disclaimer: This doesn’t mean that every present I get is a present I can’t use of course. I was just talking about those specific presents. There’s plenty I CAN use.

Wednesday, 31 October 2012


Hey everyone! You all probably wondered where my blog posts went to. Someone already asked me if I wasn’t feeling well or something like that. It’s true that you can sort of read from the amount of blog posts that I write how I’m feeling. Lately my head is way too full with information, I have zero confidence in my theoretic driving exam (don’t try to cheer me up on that one, I’ll just feel worse when I fail the exam. Don’t add to the amount of pressure please), I still have no idea how the upcoming year will look like… My mind is so full with things that I’m stressing about, that I can hardly get myself to writing blogs. Sorry if you’ve been waiting for my blogs. But let’s get to the subject that I wanted to write about.

Recently I’ve been shopping for shoes and a jacket. This shopping trip has been an event on itself, as I usually hate shopping. There aren’t that many clothes that I like in the stores and I’m sensitive to any additions on the clothes. I’m talking about buttons that I feel way too much, any pieces of string or cloth meant for decorating that touch my skin, etc. Also, I’m a small person with small legs, but with big hips in comparison to the rest. This usually makes it hard for me to find a pair of pants that look good on me.
All this usually causes for me to shop for hours, just to end up with one set of clothes. This annoys me to no end. Some people love to shop for hours. I don’t.

A few weeks ago we suddenly found some pants with elastics, so no annoying buttons, that look like regular pants when you put a shirt over it! And they were in different colors! I bought three of them, so that quickly got me three new pair of pants. I was elated! No more trying on pants for hours just to end up with one. I immediately got three, in three different colors! I also found a new type of t-shirt, that’s small at the top and a bit wider at the bottom, but with a cool print on it. So it’s comfortable, but it looks pretty cool! (at least, I think so…) This type of t-shirt is being sold a lot now, so this also got me a few of those.

I have too many old clothes that I kept wearing for years as I don’t grow that much, so I really needed something new. Simply because those clothes got too small and they started to rip and things like that. That’s how much I hate shopping: If I don’t have to do it yet, I simply won’t. I’ll keep wearing those old things until they rip and/or get too small. Also, there’s the matter of change. I don’t like to change my style, because that’s ‘not how it’s supposed to be’ and I won’t feel like myself anymore.
But with these new clothes I didn’t feel like I changed myself, even though I slightly changed my style. It was a weird new thing! I had to get used to it, but actually liked it!

Well like I said, recently I had another day of shopping, for shoes and a jacket this time. I walked into the shoe shop and my mother and I immediately went for the type of shoes that I aways wear: black sneakers, maybe with a bit of colour stripes or something… I tried a few of those on, but they didn’t fit me that well. Also, those type of sneakers aren’t being sold that much anymore. I did some thinking and suddenly remembered that a Cosplay (costume) that I have, had some cowboy things to it, which actually suited me pretty well. I told my mum and softly said that I wanted to try something like that. Cowboy-like boots or something… My mum looked at me surprised and I was surprised with myself! That’s a big change for me! Then my mum smiled and quickly went to find a pair.

She found a pair and I tried them on. They actually suited me pretty well! Suddenly I got restless. This never happened to me before! I wore sneakers all my life! This was a change I had trouble accepting, but I liked the boots. This caused an inner conflict and I kept looking in the mirror in shock. What to do? What to do? This isn’t right, but it looks so good… What to do??? Then I decided I just had to do it. I told my mum: “Buy it! Quickly, before I change my mind! I can’t stay this strong for too long!” She bought the pair for me and now I have a pair of boots… Actual boots… I’m still a bit in shock because of this.

After that we went shopping for a winter jacket. We went into a shop and quickly found a good looking jacket. I put it on and suddenly… (fake) fur! There was a strip of fake fur around the whole neck, which was supposed to keep the neck warm. Usually I’m okay with fleece or something like that, but those ‘hairs’ were way too itchy! They itched under my chin like there was no tomorrow and my whole system was instantly overloaded. All I knew was that I wanted the itching to stop. I quickly got out of the jacked, threw it on the ground and told my mother to get it away from me. Was I being childish by just throwing it on the ground? No. I was simply so overloaded, that my whole body just screamed ‘get me out of here!’ and that’s what I did. I got out of there. Or better, I got out of the jacket. I couldn’t think beyond that. I couldn’t think about neatly hanging it back where it was. All I wanted was to get that fake fur away from me.

We did learn from this though. We now knew to search for a jacket which has no itchy things around the neck. I’ll wear a fleece scarf if I want my neck to be warm. This limited our options though, as a lot of winter jackets have something itchy around the neck. But two stores later we actually found a great jacket, which I love. In one of the stores where we couldn’t find a jacket, I actually found two new vests which look a lot cooler than the ones I already have.

So no, I didn’t have any big changed, except for the boots. I still have simple shirts and pants. But it’s the style of those shirts and pants that I changed. There’s more colour and they have a cooler style to them than I normally wear. This may seem minor and not even very noteworthy to most people, but to me it’s a big change and I’m very proud of myself.

I’ve always had problems with clothes. Most people don’t notice it, because they just see me in daily life and I already have the right clothes then. But one day you might see me when I’m wet from the rain and I’ll feel terrible. Most people think I overreact when I try everything I can to get into dry clothes, or dry the clothes that I’m wearing. “You won’t melt from a little water, will you?” Is usually what people say to me with a smile on their face. Of course I won’t melt from a little water. It’s not the water that’s bothering me. If that was the case, I wouldn’t be able to swim either. It’s the clothes sticking to my skin that’s bothering me.

I’ve always had this problem. When I was a child I was even more sensitive to wet clothes and it was such a problem, that I would run to my mother crying and I couldn’t be comforted until my clothes were dry. Now I’m not THAT sensitive to it anymore, but I still can’t ignore it when my clothes are wet. I can’t get used to the feeling. I keep feeling it and can’t relax until I put on some other clothes or until it has dried. Some people think that I overreact, but I don’t. Wet clothes are a really big sensitivity issue for me. There isn’t much that bothers me more than wet clothes. So much even, that I rather wear short clothes in the rain, than wet clothes, because then at least there isn’t so much cloth sticking to my skin. I can dry my skin with a towel. Drying clothes is harder.

I know that some people with Autism are even more sensitive to clothes than I am. There’s a lot of prejudice against this. Some people think that this is just because they are spoiled, but that’s not true. Being that sensitive to something is terrible. Imagine having ants running all over you all day long. It’s a terrible feeling. That’s exactly the way it is.

Sunday, 21 October 2012

A turbulent week

This week was supposed to be a calm and quiet one. I didn’t have that much planned and my parents were on a holiday to France. That means that I was alone with my brother and sister, meaning that I could play my music without headphones when they were out and I could have friends come over and things like that! Sounds fun right? I probably had a blast right?? Nope.

If you have read my last two blogposts ( and ) you would know that I was still recovering from the flu and that my Monday didn’t start out that well. This trend continued.

About an hour after I posted “Agreements”, I went to the kitchen and scrambled some eggs to put on a sandwich for breakfast. While scrambling the eggs, I saw some children from the school across the street picking on another child. They weren’t just calling names (which they were also doing by the way), but they were pushing and pulling him and things like that. It was awful. They were probably in the 5th or 6th grade (for Dutch people: Group 7 or 8) and I’m a short girl and they were with about 7 or 8 of them, so I was contemplating whether or not to step in. There were no teachers or parents around at the time. Then they started choking him with his keycord and I drew my line. Enough was enough, I wasn’t about to just stand there and watch this happen.

I left my eggs (they weren’t in the pan yet, don’t worry) and stepped outside, yelling for them to stop. They didn’t hear me in the noise they were making themselves, so I stepped very close to the girl leading the whole thing and told her to quit it again. She quickly hid the keycord behind her back and said “Oh, it’s just a game ma’am.” Yea right! If there’s a game where a group of children pushes and pulls one kid while calling him fatty and then start choking him, then it’s a terrible game. No, I wasn’t buying it. I told her I’m not an idiot and that she had to give him his keycord back. She went on with her lies, asking me “What keycord?” I said: “You know what keycord, give it back!” Then the kid who got picked on felt supported and said: “Yea, give it back.” She finally took out the keycord from behind her back and responded with “Fine.” She gave the keycord back and I went back inside, furious about the whole thing.

After I got inside, I went back to scrambling my eggs in the kitchen. Suddenly one of the kids outside grabbed something from the ground and got prepared to throw it through the kitchen window, towards me. The rest of the group quickly grabbed him and yelled at me “He’s got a rock! Get away!” I got scared and quickly got to the couch on the other side of the house. All my memories from the bullying from my past got back at me and I had a panic attack and started crying. I had a quick look outside, saw the whole group walking towards the school, then I quickly went upstairs to my sister who was still in bed (but awake).

Later in the day I was a bit more calmed down and called the school to tell them what was going on. The woman on the phone almost wanted to tell the class I called in and to tell them what they did was bad. I told her that’s not a smart thing to do, as I already almost had a rock through my window and didn’t know what they would do if the woman would point out that I called in. She said she then didn’t know what to do and that she would speak with the school board the next day (the school board wasn’t there at that moment).

The next day I got called by the school and they said there were more complaints by neighbours about lack of respect by the school kids. So the school decided to make a school project about how to treat the neighbours. They asked the children to think of activities to help the bonding with the neighbours.

This doesn’t really help the kid that got bullied in my opinion, but I do think it’s great that they got the children involved in thinking about activities to help bond with the neighbourhood. At least, when the children respect the neighbourhood more, it’s easier to help keep an eye out with these things and we can feel a bit safer.

The rest of the week went fairly calmly, but I wasn’t feeling completely recovered from my flu yet. Because of this I kept on coughing the whole time, I shivered at even the slightest cold and had so little energy, even doing something like going to the supermarket drained most of my energy. Of course I had no energy for having fun with friends or something like that. At one moment I seemed to be getting my energy back and could even walk around in the city a bit. Then, on the night from Thursday to Friday, my temperature shot straight up again. The whole of Friday I felt terrible again. I did go to the Weekly Autism Meeting, but I got in a little later and didn’t do much. I was mostly there for the company and some supervising.

Yesterday (which is still today to me, as I haven’t gone to bed yet. But I’ll stick to the clock time now, as most people will read this during the day) I felt a little better. I’m still coughing a lot and I haven’t got all my energy back, but it’s still better. But my parents would be coming back from France around 16:00 (4 pm) and because my brother was busy with school, I was sick a lot and my sister can’t do everything on her own, the house wasn’t in its best shape. So I used all the energy that I could spare, and so did my sister (my brother was out for the day), to clean up most of the things that we couldn’t do last week. We did do housework, it’s not THAT bad, but there were still a few things that we were behind on.

After that was done, my energy for the day was gone. The rest of the day I simply watched some television and surfed the internet.
So that was the week that was supposed to be filled with tons of fun. Let’s hope next week will be better. I’ll have more planned, so I’ll be busier, but on Thursday I got a day to an amusement park with my sister planned and on Friday evening we’ll have a big Halloween party at the Weekly Autism Meeting. I’m looking forward to those two things!

Monday, 15 October 2012


Whenever someone makes an agreement, may it be a promise or an appointment or whatever, to me it’s important that person does everything to follow up on that agreement. If the agreement can not be followed, there should be a very good reason (like: The train was delayed, the alarm clock didn’t work, a lot went wrong on the way there, someone died, someone had big issues that had to be dealt with, etc.).
This rule doesn’t just apply to others who make agreements with me. That would just be hypocrite. This obviously applies to me too.

Today I woke up by the sound of the front door bell. I quickly got into a bathrobe (something just as quick and easy wasn’t nearby) and went downstairs. Luckily it turned out my brother already opened the front door. Suddenly my driving instructor was there, ready to pick me up for a driving lesson. But I was sure my driving lesson was planned on Wednesday! I told my driving instructor that and confused she showed me her scheduling. I showed her my agenda on my smartphone. She asked me to check my e-mails with the planning in them. I checked those e-mails and they agreed with me. I said I would be fine with quickly putting on my clothes and have a driving lesson anyway, as I was clearly in her schedule. She said that wasn’t needed and drove off.

I was confused. She knows agreements are important, as she’s trained to work with people with Autism. I can’t remember her ever making a mistake in the scheduling. I went to sit on my bed and checked the conversation e-mails between her and me to see if I missed anything in there. Suddenly I found the e-mail where she rescheduled the meeting.

There was no excuse. Upon reading the e-mail I remembered seeing this e-mail before. It should’ve been in my agenda, but I didn’t put it in there. I simply forgot. There’s no excuse for this, I should’ve put it in my agenda the minute I saw the e-mail. Simply forgetting isn’t a good reason for forgetting an appointment to me. Especially not since this is costing her and me money and I already had to cancel the previous appointment due to being ill. People on Twitter are now telling me that such a thing can happen. I know that, but still… I shouldn’t have forgotten this. I feel bad about this.

Sunday, 14 October 2012

The flu

You might have noticed that I haven’t updated my blog last week. The reason is that I fell ill on the night from Monday to Tuesday. At first I was so restless, I thought I had a bad response to the new asthma medicine, but then my temperature went up and I got some other symptoms and it turned out that I simply got the flu.

Last Friday evening was the first time I was able to get out of the house again. At the moment I just have a bad cough, my throat hurts a lot and I don’t have much energy. I don’t have much to tell about last week, as I was mostly bed/couch bound. I felt so bad, I couldn’t even browse the internet on my laptop. My days were mostly spent tossing and turning in bed during the bad moments, and watching some television and checking some stuff out on my phone for a minute every one in a while during the good moments.
So yea, this is a very short blogpost as I don’t have much to say about the last few days. I simply had the flu.

Saturday, 6 October 2012

It works!

On the night from Thursday on Friday I was very emotional. My emotion led me to stress out too much and have a mild hyperventilation attack. After that I went to bed, feeling awful. When I woke up, I still felt awful. I had trouble breathing, was sweating, was dizzy and I had very little energy.

Don’t worry, I’m used to that. Whenever something big happens, it can drain all my energy and make me feel awful. I figured it would be the same as usual and I just had to ride it out. During the day it just got worse and I hated my day. I was scared I wouldn’t be able to go to the weekly autism meeting. Around 16:00 (4 pm) I suddenly had an idea!

I was out of breath right? Hyperventilation attack made it happen… What if it’s the mild asthma that made my response to my emotions worse? What if that was causing those hyperventilation attacks all this time? Wasn’t I supposed to inhale some medicine whenever I felt out of breath?
So I tried to take the medicine that would widen my throat in order to breath easier… and it worked! Slowly but surely I started to feel better.

Now I wonder… How many of my bad days are caused by the mild asthma, and how many aren’t? I think I’m going to pay attention to this. If a lot of my bad days are caused by the mild asthma, I might just be able to reduce my sick days significantly!
But I can’t cheer too early yet. Let’s first see how big of an impact this is. If it’s not that big an impact, I might just be too disappointed… So I’m being careful on getting my hopes up too high. Fingers crossed though…

Thursday, 4 October 2012

Answering Questions - Less tired

Today I continue with my ‘Answering Questions’ section. If you have a question about my Autism or my Chronic Fatigue, please ask me. I’ll try to answer it in a blogpost if possible.

The question that I’ll be answering is: “Do you notice any difference between your energy since you just got Chronically Fatigued and now?” The easy and quick answer is: Yes.

Getting Chronically Fatigued happened gradually, it didn’t just happen overnight. Only at one point it got too much and I collapsed and couldn’t finish my school year. This is when I started going to a psychologist and had several medical tests. I’m going to use this point as my starting point, as this is where it was at its worst.

At my worst I couldn’t even go to the supermarket normally. Just so you know: There’s a supermarket just two minutes cycling away from my home. I can even walk that if I want to. Just going to the supermarket was already bad enough. Then I didn’t know how to get back, as I didn’t have the energy for it. I would end up sitting on the side-walk, regaining my strength. One time I even went to the snackbar next to the supermarket. Not because I wanted an unhealthy snack, but because I needed quick energy and a better place to sit, so I could rest up. All this, for two minutes of cycling.

As a way of recovery my mum once took me to a place that sells plants and other garden stuff (I have no idea how to call that). This was a twenty minute bike trip. She would let me rest up on the side of the road whenever I needed to. Getting there and back took all day long, because I needed to rest up so much. It did get me out in the open air, which was very good for me. (because I had so little energy even on good days, I had plenty of days that I was bed bound. I didn’t get much fresh air because of this. This is why my mother did this.)

Now I’m about seven years later or something like that (I might be off on this one. I didn’t keep track.) and a lot has happened since then. I learned to spread my energy, I got physical therapy, I now know that I have Asperger’s Syndrome and how to deal with it, I got vitamins that I take, I have less hours of work in a day (What most people always forget: School is an average of eight working hours a day!), I have better guidance, etc.
All this helped in getting me more energy. Every single thing is a small thing, but together they changed a lot.

I’m still Chronically Fatigued, but I have come a long way from where I was. Because my life is now better organised and better suited to my needs, my fatigue got a lot less. First I couldn’t even go to the supermarket. Now I help run events and go to LARP and things like that. I still can’t go on for many hours on end and I always need a lot of rest after an event. This is also why I still can’t hold a job, because it still wears me out too much. But still, I went from not being able to go to the supermarket to being able to help for a few hours with something before I need rest. So yes, my energy got a little better in the last few years with the help of many small things.

Tuesday, 2 October 2012

Answering Questions - Directions

Lately I’ve noticed that I’m pretty good at explaining my own actions, but that I’m terrible at coming up with a good subject. The reason for this, is that I take a lot of my own actions for granted. It isn’t until someone comments on it, or until someone responds in another way, that I realise I’m doing something out of the ordinary. This is also a good lesson for myself, to get more aware of what I’m doing differently, so that I can take into account that the other person with me probably needs an explanation sometimes about my actions.

So, for the first question. A friend of mine, who is autistic herself, asked me if my navigation skills are as bad as hers. Yes. My navigation skills are horrible. No, beyond horrible. My parents always joked (don’t worry, all in good fun) that I need a navigation device for all purposes, even walking and cycling and inside of buildings. Well, let’s just say ‘hurray for smartphones’!

I’ve had this problem all my life. One day at primary school the whole class went on a trip somewhere by bike. Because I didn’t exactly get along with my classmates, I drove in front with the teacher. On the way back the teacher suddenly had to turn around to correct a few students who were up to no good. He did this right in front on a piece of road that went straight and also had a turn left. I didn’t know where to go, so I panicked and simply went on the straight road, hoping for the best. The rest of the class laughed at me and took the left turn. Some said, while laughing “We went on the same road on the way there, you dummy! You didn’t even remember this?” No I didn’t.

Whenever I go somewhere, that doesn’t mean I can go there again. Even when I learned how to get somewhere, that still doesn’t necessarily mean I can find my way back. Sometimes I even hurt someone with this. I have people who I’ve known for years, who still need to pick me up from the train station, because I have no idea how to get to their home. I even have no idea how to travel the last part to a guy I dated for over 4 months. This surprises a lot of people. I’m not doing it on purpose though. I seriously tried to remember it.
If you want me to remember the way, you have to give me the time to process every little part of the road, walk over it a lot of times with me, back and forth, then let me try it again another day with you next to me. Why with you next to me? Because when I get lost I panick.

Getting lost is a whole problem on itself. When I get lost, with nothing to guide me back, I have a big problem. If I’ve crossed a few crossroads, I can’t remember which one I passed and which turn I took. Also, I can’t remember which general direction I came from. I follow certain set roads, I don’t have a map in my head.

To me (correct me if I’m wrong, this is still a big mystery to me) it seems like most people have a big 3D map in their head, connecting everything. Much like Google Earth. Whenever you learn two pieces of road which lay close to each other, you can travel in-between these roads too. (right? Am I wrong?) I can’t do this. I learn one straight road and end up where I need to be. When I turn around and want to find my way back, everything looks different. Did I take that turn left? So I should go left? Wait no, opposite, so right… Or did I take that turn right?

Whenever you try and teach me to find my way back and you let me try for myself first, you’ll probably catch me turning around a couple of times. This is because I try to remember how it looked on the way there and then try to mirror that in my head by turning back and find out where I came from. This isn’t because I’m stupid, or because I never learned to read a map. I did learn to read a map and I’m not stupid. Things just work differently for me. I don’t have a 3D map.

Rather, a city is like a big puzzle to me and all I have are separate pieces. Even the same piece turned around doesn’t look the same to me. So, what is a piece? A piece is one road. For example, the road to physical therapy. Suddenly I cross the road to physical therapy in my driving lessons from another angle. This gets me confused. Usually this leaves me exclaiming to my driving instructor: “Oh! This is where we are! I see!” Then we drive on and I’m lost again.

One time we drove from my physical therapy to a school that I know the way to too. There was just a small, easy to remember, piece of road between these things. Suddenly two pieces of puzzle connected! But just those two pieces. I know that other buildings that I know the way to must be somewhere close to physical therapy too, but I can’t drive from those building to physical therapy. I never learned about the roads in-between. I would have to go back home, then take the familiar road to physical therapy.

Someone once showed me the map of my city and showed me where all my familiar points in the city were on the map. That person then smiled at me and said “This would make things easier right??” It didn’t. So, okay, they’re there on the map. But when I’m there, things don’t look like a map. I can’t follow the little line to my direction. I also can’t remember all those lines on the map and where they went. In order to use this information I would need to take this map with me at all times and turn it around while walking.

I have the same problems in certain big buildings. Especially when they’re big with many hallways leading to the same things and some having a dead end. I would have a tour of the building and then just know that one route. Usually a tour is done in a circular way to cover everything, so I would have to make a circle in order to get to where I need to be. A lot of people look at me like I’m crazy and ask me “Why didn’t you just use this *points* road??” I can tell you why: Because I honestly didn’t know that was a possibility.

Then – many people ask me – why don’t I explore more? Because I would get lost! And getting lost equals panic. Panic makes me cry, makes me even more unable to assess the situation, gives me a headache, takes away all my energy (which I already have so little of) and can even cause hyperventilation. This would mean that I’m not just lost, I now have many medical problems. So no, random exploration isn’t a good thing to do. The one time I ever did that without panicking, was at Abunai (Anime/Manga convention), which has a building with many roads going in squares. This is a kind of circular motion too, which would just lead me back to a place I know. So no worries. Unfortunately this isn’t the case in most places. There are a lot of squares in the city, but they lead to many more squares, which just lead me further from my destination. Some cities don’t even have squares or circles. I was once lost in Amsterdam with the battery of my phone dead… Don’t make me talk about that please…

So please, don’t just laugh at someone who gets lost easily. This person might actually be really scared of going to new places because of this. Maybe this person also thinks in one-direction-roads and pieces of puzzles and isn’t just dumb. Stop laughing and start helping.

By the way, this is the reason I rarely travel without my phone nowadays. My phone is a smartphone, which has navigation, train information, bus information, etc. Some people think that I’m addicted when I panic when I don’t have my smartphone with me when I travel. That’s not true. I panic, because my smartphone is the sole reason I started to dare to travel on my own in the first place. Without it, I would be back to where I was before. Getting lost all the time, and because of this not daring to go anywhere alone. Confined in roads I know, because I would get lost if I would travel out of known areas.

If you know anyone like this, don’t laugh. Rather help this person get out of their prison of unknown roads. They will probably thank you for it.

Do you have a questions about my Autism and/or Chronic Fatigue too? Please ask me, even if it’s really personal. I will try to answer it and maybe even make a blogpost out of it. Thank you in advance!

Not my day - 2

You might be wondering "Number 2? Was there a number 1? Did I miss a blogpost in a series?" but no you didn't miss anything. This is just a day that is just as bad as a day that I wrote about in another blogpost, so I decided to make it a sequel. Here is the other blogpost:

Today was NOT my day. It already started right after I woke up. As I only had one appointment at 15:50 (4:50 pm), I decided to sleep in a bit. Only I didn’t remember that it was the first Monday of the month, which is important in the Netherlands. So I woke up just before 12:00 (noon, 12 pm) and was greeted by the monthly air alarm test. There is something in the sound of the air alarm that I can’t stand. It makes me feel very uneasy. When I was young it actually bothered me so much, it made me cry. I’m over that now, but it still has a weird and huge impact on me.

After the air alarm was done, I went downstairs, just to find frozen bread, which was just taken out of the freezer. Up until now the inconveniences have just been minor and I was a bit cranky, but I was sure everything would be alright. To feel a bit productive, I decided to contact the Fatigue Centre about their e-mail which wasn’t functioning and to still get the answers I needed. They said their e-mail should be functioning now, if it didn’t I should contact them again, and that the people they needed for my answers weren’t there.

Still cranky, I decided to send those e-mails later in the day and go out in the city to get some fresh air to lift my spirits a bit. I forgot the bus stop that I needed was under construction and I got dropped off a stop further. Because of this, I had to walk back to the stop that I needed before I could walk into the city.

After that, I went straight to the place where I worked as a baker, as I was promised a letter of recommendation and I was told the person that I needed was mostly available on Mondays. I asked some old colleagues of mine where this person was. They said they saw him earlier that day, but that they didn’t know where he was now. I waited for a while, but then decided to just go, because he was probably already gone.

Still cranky, I went to the City Hall to get some answers on an activity that I’m working on. There they told me to call a number that I already called before on the same issue. I told them that I already called that number, to which they responded which division I needed. I called and, after being put on hold, asked for that division. The lady on the phone first demanded a full explanation from me, then concluded that I needed the same division I already asked for. She then continued by putting me through to that division. After a few more minutes of being on hold, I was told by the same lady that there was no answer due to them being too busy. She then asked me some more questions and ended up taking a note of my call and that I should be called back by that division.

At this point I was very cranky, as nothing up ‘till now seemed to go right. Ready to scream, I went into a shop to get a nice present for a friend of mine who will be celebrating her birthday soon. This actually went fine, but later at home I would find out that I forgot to withdraw some money to go with the small present as I planned to.

Still pretty cranky, I decided to drop by at the office where I can check my e-mail for the weekly Autism meeting. (usually I check this at the meeting itself, but the last month I didn’t have time for this, which meant I hadn’t checked this e-mail account for a month already) This turned out to be a bad decision, as I wasn’t in any state to communicate with others. This being so, I had the worst communication with the people there, which made it a very awkward situation explaining what I was doing there. I did manage to explain it in the end and was allowed to check my e-mail, but it was the most awkward conversation ever. (Although I did end up explaining to them how to get their computer working, right before leaving the building, so that’s a plus I guess?)

After this disaster, I decided to just go home, as nothing good was going to come out of this day and I also needed to safe some energy for physical therapy, which was that one appointment I had. I got on the bus. My sister called me and told me she actually happened to be at the bus stop near our home, so we decided to meet up and… The stop-button turned out to be malfunctioning, so the bus didn’t stop at my bus stop. Of course. Why was I expecting this bus ride to go well in the first place? Not after a day like that!
After arriving at the next bus stop, I quickly called my sister (who had a very surprised look when she saw me driving by!) to explain everything, and jumped on the next bus.

While walking the last part home, I told my sister I had the worst day and she said that I could now at least rest at home. I agreed and when I arrived home I decided to get me a glass of lemonade and… The phone rang! I quickly put aside my glass and ran over to my phone. I was ready to answer it, when… (!!) They hung up on me. I looked at the number, but it was a hidden number, so I couldn’t call back. I’m sure this was the division that would call me back and I missed it. This was the last drop and I gave up. My day wasn’t going to be a good one.

After that no big things went wrong, but nothing went right either. I had physical therapy and after that it was already time for dinner. In other words, there wasn’t much of a day left. Today was a bummer. I hope tomorrow will be better…

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.