Thursday, 31 May 2012

The need to know

Whenever there is a question, I need the answer to it. A very cruel thing you can do to me is start a sentence (for example: “You know, I’ve been wondering…”) and then end that sentence with “Nah never mind, it’s not important.”
If you ever do that to me, be prepared to get a very annoyed look, followed by me turning into a little child going ‘Tell me, tell me, tell me!” even though it probably really isn’t important and you don’t need the answer to your question anymore. The question on itself has become irrelevant, only knowing what it was has become important.

This is true for everything in life for me. I’m sure there are more people who have this, but to me it’s frustrating to a point where I won’t stop until I know. This hasn’t grown on me as far as I know, but I’ve always been like this. I remember when the teachers at primary school had a problem they needed fixing. Especially when they had a big event planned and it didn’t really go according to plan. I was usually one of the first students to see the teachers get unsettled and notice things aren’t seeming to go as smooth as it usually goes.
Whenever this happened, I got very uneasy. Why? Didn’t I like things going wrong? Nah. It was simply that I just needed to know.

I’m also a problem solver. When I know of a problem, I can’t let it go, until I have solved it. Now, there was something going on and I didn’t know what and I had to know. HAD to know. So this is a problem. How do I solve it? As easy as possible: Ask. So I would walk up to a teacher and ask what was going on. Of course the teachers have been taught that a student can’t be bothered with your problems. The student has plenty of problems of their own, don’t bother them with that. So the standard answer is always something like: “Don’t you worry about that, we’re having some minor issues, we’ll fix it.”
That’s not the problem. I’m sure you’ll fix it, no doubt. But what is there to fix? What is it? What? What??? Yes, this not knowing is terrible. So I would try and explain to my teachers that I simply don’t like not knowing and just wanted to know what was wrong. Not that I felt like I needed to fix it, but that I simply wanted to know. After some bugging (sorry teachers!) they would usually tell me.

Now we move on to the second part of this. I just told you: I’m a problem solver. Up until now I’ve been very honest. I didn’t care about the problem, I cared about knowing. But now I know the problem and I’m usually so fast in solving a problem, especially when it comes to events (although I didn’t realise this connection yet at that time), that the solution comes to me straight away. And then I see them struggling with something where the solution is so obvious to me… How can I not speak up? How can I just sit back and watch people struggle with something where I’ve already thought up the possible solution? To me this just sounds cruel. Usually people tell me that’s okay, it’s their event, I SHOULD just sit back and watch. But I just can’t get myself to do that. If I was struggling with something and someone knew the answer, I would like to know it.

So was I lying about not being bothered with fixing the problem? No I wasn’t. I truly wasn’t thinking about solving it, until the problem had been told. And I didn’t go through any lengths to solve it when I knew about the problem either. My mind just instantly ran over every possible solution, like a train with broken brakes, just passing every station when it wants to stop. And then I had the solution and everybody thought I just couldn’t let the event in someone else’s hands. Of course I can. The only thing I can’t, is not knowing and not thinking of solutions. These two go hand in hand. And why not speak up, if I can help? I even enjoy helping, it bothers me less than not knowing and not thinking bothers me. Then why not include me?

This is a big part of the reason I ended up helping in anime/manga events a lot. Sometimes I go to an event as a visitor and something goes wrong and I ask what is wrong and I get the sentence ‘we have a technical error’ or ‘we have a logistics problem’ and that just drives me up the wall. These are sentences that seem explaining, but actually don’t say a lot. The first sentence says SOMETHING is wrong with the material. The other one can literally be anything. People use that sentence for problems in anything. Look it up in the dictionary. It’s everything that makes a business run. Yea, if there is a problem making the business not run right, it’ll be a logistics problem. Thanks for the non-explanatory sentence.

When I help at a convention I’ll be the person who’s allowed to know what is going on AND I’ll be allowed to come up with a solution. Two problems fixed at once.

Wednesday, 30 May 2012

What has been...

For a lot of things this counts for me: What has been will always be until proven otherwise.
At my previous job I often asked if I didn’t cost them more time with guiding, counselling and thinking of jobs for me to do, than that I was giving back to them. They always told me not to worry about it. They said I just started my job and will take a few months to fully understand my job and that that’s okay. I was worried, but even my boss said he was confident that I just needed some time and I’d be okay.

At some point my trial period of two months was almost over and they called for an evaluation interview. I was okay with that, because I was doing fine right? I just needed some time right? My jobcoach arrived to support me and we were about to start, when they asked if they could talk to my jobcoach separately. This is where I got nervous. Why would that be necessary right before an evaluation interview? My concerns were spot on. Once they returned, the evaluation interview had turned into a conversation where they told me they were firing me, because I cost them more time thinking up jobs for me, than I was taking from them. Needless to say; I was pretty upset.

Lately, like I’ve told in my blog, I haven’t been feeling well. I’ve been absent from work because of it for three days. In fact, not feeling well is an understatement. The reason I was absent, was because the whole world was spinning and I could hardly walk! Remember the picture I put with my blogpost telling this? That was truly how I was laying in bed that time, I didn’t just feel a little bit off, I was ill.

Now at work they stated that I had to work on being absent a lot, since three times in five weeks is too much. I told them I didn’t get that. How can I work on that? It wasn’t that I was just too exhausted, I was ill! Do I have to create a force field against viruses or something? This got me very puzzled, which I also stated towards them. My jobcoach said she explained already that she did think I have been absent for a good reason, but she still thinks I should work on being ill a lot. Mixed signals much? I started stating again that I didn’t get how I could work on that and she said I didn’t need to defend myself, that she understood. I’m still confused. They understand that I was absent for a good reason, but I should still work on it? How?!

She spoke with my team leader and I wasn’t allowed to listen in. After that they stated they were planning an evaluation interview. I honestly pointed out that I didn’t exactly have a good experience with this kind of situation. My jobcoach simply said: “Don’t worry, you still got two more months of trial period.” I told her that wasn’t exactly the comforting answer I was looking for. I’d like to stay there after those two months too and this conversation didn’t comfort me at all. I asked her what they expected from me. She simply stated I could ask my team leader that during the evaluation interview.

Now my whole system is shaken up. Everything is telling me I’m in trouble. This is going too similar like my last job. I’m trying to tell myself I’m doing a great job and that I indeed had a good reason for being absent and that they are positive about all the rest that I do. But… This is what they said at my last job too. This didn’t mean anything there. Because of this, I don’t even find comfort in knowing I’m doing my job well. The only thing I can think about is the little things I did wrong and that those are all reasons for firing me in another two months or something. Because of this experience at my previous job, positive thinking seems to even only make it worse, because then I’m stuck thinking about how unfair it is that even when I’m trying so hard, it still doesn’t guarantee anything! That no matter how hard I try, I still might not make it.

At school they tell you to get good grades and you’ll get a good job. Not if you’re Chronicly Fatigued. Then you can be the best at school and loose every job you get for not feeling well all the time. It’s not fair. It’s simply not fair… Here I go again. This is how my brain works at this moment. Being great at something has meant nothing so far. Who says that it’ll mean something now? What has been will always be until proven otherwise.

A burden

At the moment I'm in bed and I'm having a sad moment. These moments happen sometimes. I tend to worry about things in bed. Sometimes it gets so bad, there's such a hurricane in my head, that I just end up crying a lot in my bed. This is also terrible for my sleep and that's where my Chronic Fatigue comes to say 'hi'. Gosh, I hope work will be alright tomorrow... That's why I'm writing this off my mind.

So, what's it that I'm worrying about this time? It's something I worry about more often. I sometimes feel like a burden with all the special needs that I have. With that I don't mean that people would just be better off without me. I'm not that dark in my mindset. I used to be, but not anymore. No, I do believe I can be a nice, decent and fun person to be around.

Still... when I see someone struggling with my special needs, it breaks my heart. (mind you're going too fast, I'm trying to write in a neat order here, shush) Like when people carry something heavy for me, or we need to leave a place because the music is too loud, or stuff like that. Even at work I have to tell my colleagues to tune the radio down sometimes. And there are many more things, both big and small. Like when I'm really angry, there's a special way you'll need to deal with me, or I might explode. Yea, I'm not proud of that... That might just become a blogpost on itself one day, once I feel more comfortable writing about that.

People have stated that I can be very exhausting to live with and I can understand that. They don't mean they dislike being with me, but the special needs can take their toll. Sometimes I'm with people who don't tend to those needs and then suddenly I realise how much is done for me. One day my mother even cried from pure exhaustion during a very difficult time for me (and evidently also for her).

It's these times that I feel like a burden to people. I dislike this feeling up to the point of self-hatred during this time of worrying. I know people don't mind taking care of me. Having a few needs is okay. I even tell my friends who have special needs too this and I mean it. It's just that I feel that, especially combined with my Chronic Fatigue, that I can sometimes really take a toll on someone.

I'm sorry for these times. I wish I could take my Chronic Fatigue away. I wish I didn't need so much support. I'm truly sorry.

Monday, 28 May 2012

Not necessary

Lately I have noticed something. After writing about some of my struggles, some people have started to get a bit overprotective of me. I’m not talking about some specific people, so please don’t start asking ‘were you talking about me?’ or ‘were you talking about my comment?’ because I’m talking about both online and offline.

Don’t worry, I’m not angry at all. I can see that this is all out of good intention and I’m grateful that I have such caring people around me. The thing is though: It isn’t necessary. I’ve struggled with these things all my life and I’m still okay, so I will be in the future too. I’m not the one to suffer in silence. I’ll speak up when I need help and if I can’t, I’ll probably be in so much trouble you’ll be able to read it from my face. If I don’t speak up, it wasn’t necessary.
Besides that, I have a caring family and plenty of friends. I’m getting support when I need it.
My sister just said ‘If I don’t care, other’s shouldn’t either.’ What does she mean by that? She’s family and knows me best. If you’re ever near me and my sister and you’re worried over me and my sister isn’t, then you probably don’t need to be worried.

I never intended to write my blog to gain attention for my problems. These problems have gotten enough attention after I got chronically fatigued. Yes, I would’ve loved more attention before my diagnosis, but that attention is there now. I write my blog, so people can understand what a person with Asperger’s (and Chronic Fatigue) go through every day, so that they can understand other people who have it too. A person with Asperger’s and Chronic Fatigue go through both happy and sad times, just like we all do, and both times need to be understood. When a person with (one of) these diagnosis’s is in your life and has a hard time explaining his or herself, I hope this blog will help.

So please don’t get over caring. What is over caring? When I’m terribly tired, offering to make me a sandwich? Nope, that’s nice. Please do. I’m talking about when I just for a second cringe from a passing sound or something like that and you’re immediately going ‘are you okay?!’ or something like that. Yes, the sound bothered me, but it passed quickly. I’ll be fine. Or when I’m carrying something and you’re asking ‘Isn’t it too heavy?’ ‘No.’ ‘Should I carry it?’ ‘No, I just said it’s okay.’ ‘I just don’t want you to get tired!’
Even though I’m Chronically Fatigued, if I say I can still go on, then it’s my responsibility. Offering to help is okay, but if I decline, stop asking.

When I read this back, I feel I do sound a bit angry, so let me say this again: I’m not angry. Actually, thank you for caring so much. I AM actually touched by all the nice people around me. I just want to say it’s not necessary, not that I don’t care or don’t appreciate it.

So in short: Asking if I need help? Nice of you, thank you! Keeping asking after I declined, and/or asking for every little thing? Unnecessary. Still, thank you for caring.

Saturday, 26 May 2012

Organising bliss

My parents and brother have gone to our little house in France. My sister and I stayed behind. We’re fine with this, since the weather is great here too and it’s nice and quiet at home.

Today we decided to have a barbecue with some friends in the evening. This means we got some organising to do! (who brings what, what do we need, who will we invite, etc) Remember the thing I love most? Events! Even more so: Organising events. This is sort of like it. I like organising this barbecue. The moment we thought of it, I made a list of what we need and then I made all the phone calls. After that I sent out e-mails, to the people who have agreed upon coming, with all the details.

My sister told me yesterday that I should relax, seeing I wasn’t feeling well at all after work. I told her I was fine, as long as I didn’t have to physically move a lot and that I was actually having fun!

While organising an event I’m right at home. Even when it’s just inviting 5 friends for a little barbecue. After all these years something this small has gotten really easy to organise for me. I know exactly which things are important to think about. My sister has gotten equally as good at it, so I love organising together with her. While organising, I know exactly what to do, who to talk to and more importantly: what’s going to happen. I have to be in the know of everything, since I’m the one organising, and it puts me in a position of where I know what is about to happen and when things go wrong, I can change it.

It’s also the reason I simply LOVE having a portophone (walkie talkie, but then professional) at a big convention. It keeps me in the know of everything and it helps me in doing what I have to do. I can change what I think needs changing, I can secure myself that everything is according to plan and I can answer most questions visitors of the convention have.

Being in the know and being able to change things that I think need changing. I love it.

A lot of people ask me: “But Ellen, if you’re at a convention, a lot of things are unknown and unexpected things will always happen. How do you cope with that?” The answer isn’t in that I want to plan every single thing. In fact, you’ll most likely stress your visitors out if you plan their every movement. The answer lies within knowing what to do when something unexpected happens. I know exactly what is going on and how to deal with it, and if I don’t, who to ask how to deal with it. There is safety within this.

Well, my guests have arrived, so I’m finishing this blogpost up. Time to have some fun!

Thursday, 24 May 2012

Not feeling well

Sorry that I haven't posted any blogposts the past few days. Since last Monday morning I haven't been feeling well.

I've called in sick from work. Tuesday I felt slightly better, so I thought I could work again the next day. Well I've honestly tried, but after 45 minutes I felt so dizzy, that I was honestly scared I was going to faint or something like that.

After a lot of convincing and trying to recover by resting, eating and drinking sugar water, I only felt worse. I decided to take matters into my own hands and went home.

My sister picked me up from work. At home my sister put a fan on me and gave me a refreshing drink.
I felt absolutely terrible from being dizzy all the time. My Chronic Fatigue and the heat made matters even worse. I didn't even dare to walk up the stairs. My sister asked what I was feeling and I told her I felt like I just turned around on the spot a lot and the dizzyness from it just wouldn't go away.

At the moment, after a whole day of resting I do feel better, but I haven't fully recovered yet. This is why I haven't been blogging and even now I'm writing this in bed, on my cell phone.

I am adding pictures to this blogpost, but have no idea how to arrange them, using the blogger app. If anyone does, please tell me. The picture of the blue cloth is how I'm laying in bed right now.
The piece of bread is the type of bread that I managed to cut myself on. (see the blogpost Pain )

If I've made any stupid mistakes in this blogpost, please blame my dizzy head. You're free to politely point them out though.

Good night.

Saturday, 19 May 2012


Just a few seconds ago I was waiting in a line for an hour to get to a show at the convention.

Normally this isn't a problem for me. Sometimes I wait even longer. This time, though, my feet were hurting and somehow it made it impossible to filter anything else.

In the line it's always crowded with a lot if noise. Without being able to filter it (the show began, so I had to take a break, I'm now writing on. It's the next day) I instantly overloaded. Everything suddenly seemed louder and I was starting to get dizzy. I decided to sit on the ground, even though it actually isn't allowed (I was feeling like I would faint, so I had to) and drank some water. After a few minutes I was starting to feel better and the doors to the show opened. Last night a friend of mine, who followed a course performing massages, gave me a full 1 hour massage free of charge. I'm very grateful, thank you! This relieved much of the pain and helped me sleep. (well something else made it more difficult again, but that has nothing to do with this story) As for now: breakfast time.

Friday, 18 May 2012

Events, my Kansas

Today is the first day of AnimeCon! It's an Anime/Manga convention, which is my Kansas. What do I mean by that? Well I kind of stole the word from Aaron Likens and it's the special place/interest where I feel completely in my element! I'm right at home here!
Why is this called Kansas? Please read my first blogpost to understand that.

I feel like I'm copying Aaron's words here, since he talks about this subject a lot and I feel it the same as he does.
All the way to the convention I didn't feel the excitement yet. I was looking forward to it, but wasn't exactly jumping up and down. Why is this? I don't completely feel excitement for something until it's there. I think (not sure) it's my defense meganism against disappointments, since I can't handle disappointments at all. I was enjoying the drive there though.

Once I entered the convention and saw all the people, excitement got in! Immediately problems were forgotten and I just went to greeting a lot of friends.

Now I'm having dinner at a place around the corner of the convention. My sister had to leave me at some point, because she had a photoshoot planned. That's fine, I'm used to this.

Now, though, the effects of Kansas are wearing off as I'm terribly aware that I'm sitting alone. This is why I resorted to writing this blogpost on my mobile phone.

Within a few minutes I'll be done and I'll be walking straight back into Kansas!

Wednesday, 16 May 2012


I’ve noticed that I’ve mainly written negative blogposts. I don’t like this, this gives a very distorted view of what life on the spectrum is like. Life on the Autism spectrum isn’t all bad and struggles. I want people to have hope too. It’s simply so much easier to explain negative feelings and all the consequences to explain life on the spectrum, than to explain the good things. But I’m starting to miss the point of my blog. Life on the spectrum is exactly what it is: Life. Sure, life has a lot of bad, but it has a lot of good too. I shouldn’t ignore that.

If you’ve read my blog very carefully, you will have noticed a few positives too. I want to bring those to the front. Like my last blogpost before this one. It seemed like a very negative blogpost, and of course it was seeing I wrote it while I was crying, but there’s good in there too. Between the lines I also wrote about how hyperfocussing, which most people on the spectrum are very good at, can be great when trying to learn something and/or working on something. And this isn’t just nice at school. It allows you to excel at a lot of things. Name it and you can probably use hyperfocussing in it. Of course, someone on the spectrum can’t hyperfocus on everything. When it doesn’t interest you, it’s usually a lot harder to hyperfocus on it. But you’ll probably fill in your life with stuff that interests you anyway, so try and use this to your advantage!

Want to win at a game? Hyperfocus on getting better. Want to solve a problem? Hyperfocus on solving it. Want to impress your boss? Hyperfocus on your job.
Hyperfocussing is the reason I get a lot of compliments at work. Whenever I start doing something, I want to do it right, which instantly gets me to hyperfocus. My team leader once complimented me for being so focused on my job and told me to keep it up.
Someone even said researches have argued that Einstein probably couldn’t have accomplished what he accomplished if he didn’t hyperfocus.

Is this the only plus Autism has? Nope, not by a long shot. I even have a sheet of paper with a list of things that people with Autism are usually good at in the working place. And this is just in the working place, I’m not even talking about daily situations. Like with my sister. She has epilepsy. The first time she had an epileptic attack, I was alone in the room and my dad was on the toilet. At the time I didn’t even know what epilepsy was. So, she had her first attack and it didn’t exactly look pretty. Most people probably would’ve freaked out and panicked and maybe even taken some wrong actions in the heat of the moment. I didn’t. I decided it didn’t look lethal, which kept me calm, and simply walked up to my dad saying ‘Dad, something’s wrong with my sister…’ (of course I didn’t say ‘my sister’, but used her name, but I try to leave names out of my blog)

So, another positive thing. Being able to asses a situation calmly and act accordingly. (This doesn’t apply to all situations.)
By the way, because of my reaction my dad was able to remain calm too and he simply laid my sister down on the couch. My sister has been to the doctor and is now getting medication and is alright. All this was many years ago.
I could actually go on forever writing positive things like this. There are just so many! Instead, I’m going to make a small list, which doesn’t even cover all bases.
  •  Factual knowledge
  • Logical thinking
  • Great sense of detail
  • Very honest
  • Live in the moment
  • Passionate
  • Very hard worker
  • Very punctual
And there are far more positive sides. The reason I’m stopping here isn’t because I can’t think of more, but simply because my blogpost is getting too long. I’ll try and create more positive blogposts. There are plenty of things to write about positively, so it should be possible.

Tuesday, 15 May 2012

Bored with a lot to do

Before you read this, I just want to say: Don't get discouraged. My situation is mine alone and doesn't necessarily reflect on yours. If you DO get discouraged while reading this, please read the last paragraph before discarding everything. There is hope for people with Autism. Again, my situation is mine alone. What I can take isn't the same as what you can take.

I was just watching a documentary about highly gifted children in school. While they were talking about being bored and bullied in regular classes, I broke down and cried.

Don’t get me wrong, I’m not highly gifted. I got a huge difference in performal and verbal IQ. My verbal IQ is very high and my performal IQ is very low. This is a lot of psychological talk, which basically means (all psychologists in the world, don’t go shooting me down now, I know this doesn’t cover all bases. Feel free to better explain this if you want, I just don’t know a better way.) that I’m very good at understanding and copying language, both written and spoken, but that I’m terrible at things that need to be done and processed.

How is this seen in life? You’ll see that I sound very intelligent and even learn very fast, making me great at most (not all) things in school, but that I’m very slow. At school I get one of the highest grades, while being behind on all my homework, even when I take hours more to try and complete it.

On top of all of this I’m chronically fatigued, which causes me to not even have enough energy to get enough hours at work. I also have Asperger’s, which is great in studying (hyperfocussing), but terrible in the sense of understanding social interacting. Combine these things and here we have me, a child that has the highest grades, is always behind on her schoolwork and gets bullied all the time.

All of this caused me to collapse a lot of times and needing to get to lower levels at school, because they also require less homework and less speed. At the same time it made me more bored in the sense that I wasn’t challenged with my brain. I still had to work hard to keep up with the speed, but it was just because I don’t perform as quick, not because I didn’t understand it. Now imagine a child who keeps stating she’s bored and who isn’t thrilled with joy when receiving yet another 10 (an A or 100%) for her work. Result? More bullying.

Here I was. Getting the best grades, while hardly studying for tests, but working my butt off to get stuff done and being bullied all the time. If you’ve read this far, you’ll understand I was very depressed. At some point I found my Kansas (see my first blogpost if you don’t know what that is), which is events, and I made some friends at those events. This slowly but surely got me out of my depression, but I still was unhappy at school and only went back there, because I needed to graduate.

Later I would study for being a pastry baker at level 2. As it turned out, I couldn’t take the school hours AND the internship, so I had to quit the education. I ended up finishing the year graduating as an assistant baker. I was very happy with the paper and it’s because of that that I can now do the job I can (I work at La Place, a diner in a shop that sells clothes and some other stuff).

But still I feel down. I love my new work place in the sense of that I’m having fun and I want to keep doing this for some time longer. Don’t get me wrong. But I don’t feel mentally challenged all that much. I seek challenges in my work now in the sense that I’m trying to remember everything I have to do as quickly as possible, but it’s not the same as the challenge a high level school gives you.

In my opinion this is a true loss in the school market. I wish there was a school where I could study anything I’d like to study and take all the time I need and work the hours that I can do. I don’t care if I take longer then. There ARE schools that allow you to take longer, but they still want you to make the school hours and to finish your internship and I simply can’t. Right now I’m working 15 hours a week, divided in 3 days in the week, so that I can have a rest day in-between everything. (Monday, Wednesday, Friday are my workdays) I haven’t found a school AND internship combined that is within my interest and that offers this.

Every time I read or watch something about children who feel bored, left out and sometimes even bullied at school, I tear up. I still feel very sad about this subject.

I want to add a note to this blogpost. Everyone with autism: Don’t despair after reading this! There are perfectly good schools for people with autism! In fact, studying with Autism is very much possible and even very easy if you find the right school! There are even specialized schools for people with Autism! I’m talking about my chronic fatigue COMBINED with my Asperger’s influencing everything so much, that I have needs that schools just don’t meet (or I just haven’t found that school yet… tell me if there is one). This doesn’t reflect at all at all people with Autism.
I’ve met many people with Autism who were very successful at school. Don’t get discouraged.


Today I have done a lot of thinking. One of the things I’ve been thinking about a lot is why I need so much validation. Validation? Yes, validation. I have a hard time figuring out what someone thinks of me. This isn’t always bad. For example, when I don’t think much about a person, then why would I bother what they think about me? Previous (boy)friends have wondered why I need this validation. I’ve even been accused of not trusting those around me, because I’m so scared of losing them.

That’s just partially true in my opinion. I truly am sorry if you’re reading this and I’ve ever made you feel like I don’t trust you. Actually, the moment I care enough to want validation, I trust you SO much, I’ve gotten scared of being proven wrong in that I can trust you, which hurts a lot. So it’s not you specifically that I don’t trust, it’s more that I don’t trust my own judgement. I’ve been hurt a lot in the past. Best friends and even boyfriends who suddenly turned against me. Some even lied about almost their whole life. So even when it’s obvious you care about me and I do believe you, I’m still scared and it really isn’t because of you. It’s all me. I don’t trust myself.

Now, there’s more to this. Because the above is only fitting when I already know how you feel about me, but just need validation. But how do I find out how you feel about me? Well of course there are signals I pick up. But sometimes I mistake a simple and nice act for an act of friendship for example. Or the other way around, someone tries to establish a friendship and I mistake it for just a nice person and nothing more than that. There’s almost always a point where I just drive myself mad and have to resort to the only sure thing: Ask. Are we friends?

This creates the most awkward situations for me. Some have even asked me why I need it defined in the first place. Why we can’t simply have fun, without worrying about it. Today I faced a similar situation. I wasn’t specifically asked why, but the conversation has still led me to think about it again. I searched my thoughts. Which thoughts led me to ask in the first place? My answer laid there.

I ask, because there’s certainty in there. When you’re just acquaintances, there’s so much more formality (shaking hands, keeping up with personal life less, etc.), while when you’re friends, you’re way more familiar (hugging to say hello in my friends circle, otherwise enthusiastically greeting, asking about their personal lives, maybe even send a birthday card). I’ve gone wrong within here more often. Me being very enthusiastic, while the other person looks at me like ‘what has gotten into you? I just wanted to say hello, that’s all.’ Or me being very formal, upsetting the other person who was under the impression we were friends, because I misread signals.

I like knowing where I’m at. Don’t worry, I don’t feel compelled to be someone’s friend, when the other person wants us to be. But even then, it’s nice to know what the other person’s intentions are. Then I can also make my intentions clear.

This, I guess, is the life when you have a hard time reading someone’s signals. You’ve got to say it with words. This hurts a lot of people, since a lot of people feel you should sense such a thing and not define it, but please understand that this is simply my way of dealing with that. Consider me a deaf person when it comes to body signals. I need sign language in the form of actual words.
Again, I’m sorry if I hurt someone with this. It’s not meant to be hurting. It’s meant to make it easier for me to understand friendships and to communicate. I hope this is understandable, since even I don’t understand it for the full 100% yet.

Sunday, 13 May 2012

Busy weekend

Like the title says; I had a busy weekend. The Efteling went better than expected. There were a few things stressing me out, mainly keeping track of everyone and everything around me, but besides that I was fine. We had a lot of fun and even celebrated the birthday of one of the Chill Aut board members. He got some presents from Chill Aut and I bought him a nice lunch. We also sang for him.

My sister and I both had a lot of people around us for the whole day. That’s a lot of fun, but by the end of the day we really needed some time to process it all. So instead of just going home (where there’ll be more people around us), I took my sister for a nice Chinese dinner. This was very nice and got us to calm down a bit.

Today is Mother’s Day and we prepared for a High Tea all week, so today was the day to bring it all out and finish baking some things. My mum was happily surprised and thanked us for it. We all enjoyed the High Tea. There’s still some on the table, since we always seem to make too much when we want a special meal.

Yesterday and today proved to be a lot, after not having felt well on Friday. I took it easy all the time, but it was still too much. I’m now laying down on the couch while I write this, because I’ve got work tomorrow. Fun things are nice, but I always have to pay for it with feeling terrible because of my Chronic Fatigue. I might even crawl into bed for an hour in a few minutes.

Today I don’t really have a big point to make or anything, it’s just an update, because I’m too tired. Maybe I’ll come up with something more interesting tomorrow.

By the way, I’ve been talking mainly about my Asperger’s Syndrome and less about my Chronic Fatigue. This is not because my Asperger’s is a bigger issue. Instead, it’s the other way around. I see my Chronic Fatigue as a handicap, I see my Asperger’s as simply a different way of thinking/being/living, which can be both good and bad, as is anything in life. The only reason I focus more on my Asperger’s, is simply because that’s what my blog is about. My Chronic Fatigue only gets mentioned, because it influences everything I do and also how well I can deal with things.

I’m wondering if I should keep going this way, or make a separate blog about my Chronic Fatigue, or just make this a blog about my Asperger’s AND my Chronic Fatigue. Would anyone even be interested in hearing about my Chronic Fatigue? I feel it might just be writing a lot about how tired I am and how much pain I’m in. I don’t know. I’ll think about it.

For now, I’m wrapping this up. I’m tired. Happy Mother’s Day everyone!

Saturday, 12 May 2012


 I know I already posted a blogpost today, but I just needed to get this out of my system, or I wouldn't be able to sleep.

Tomorrow we’ll be going to the Efteling, which is a very well known amusement park, with Chill Aut (the weekly Autism Meeting).

Going to the park on itself isn’t really a problem, especially not with my sister joining too. My sister and I have been going to that park at least once a year, so we’re comfortable walking there and we have a steady routine of things we want to see and in which order we want to see them.

Only… I won’t be going in this order this time, since I’m with a group. Also, I’m a board member of Chill Aut. There’s some level of responsibility I’m very scared of now, because I can’t help others if I’m in a place with lots of overstimulation myself. I’m great with that at conventions and stuff, but when I have to find my own way in a big park, it gets a lot harder.

Also, I’ve been in parks with others more often and sometimes you have these people who mindlessly run towards an attraction, without considering that they have company who can maybe be very tired or something like that. This is where both my Chronic Fatigue (too tired to run along) and my Autism (can’t keep order) start being a problem.

I’ve mentioned  this problem to  my sister and to the person guiding the board and they reassured me they’ll be watching out for me, but I’m still a bit anxious about all this. Just not knowing what is going to happen and if things might go wrong… Of course, things might go well too, but I just don’t know.

It’s weird on the one hand, because I’m used to meetings. But on the other hand, I’ve always been together with my sister and/or close friends who were watching out for me. Now I’m with people who expect ME to watch out for THEM and well… I’m just not sure I can. I really hope they can understand that.

People from that meeting are probably reading this too. Don’t feel bad when you read this, this is more my problem than it is yours. I’ll manage. For all I know, things might just go smoothly tomorrow and I’ll get home a happy girl. I just don’t know and that’s what’s bugging me.