Something smells...

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

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

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

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

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

What if a person walks by who put on way too many deodorant (or perfume)? Erm… All I can say is: sorry for my coughing, I never try to upset anyone with it…

(Just ate dinner. In case anyone was wondering: It was delicious! Describing what it was would take too much time though, as my father invented his own recipe with many spices and things like that.)

About the mint… I can hardly avoid that one. To me, all toothpastes with another flavour (I don’t like the flavour of mint either) taste like vomit or chalk. So mint it is… Also, after going to a restaurant you are usually being offered some type of mint (usually peppermint). Of course I never accept it, but most people do. This is the worst if I travel back from the restaurant in a car with some other people who all accepted the mint. It usually ends up in the car filling up with the smell of mint, leaving me nauseous during the whole drive.

I have no idea how to successfully avoid the smell of mint…

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

Medicine, food supplements and routine

Right before leaving the Fatigue Centre, I got some food supplements. Oh sorry, did I say some? I mean I literally got a bag full. And I mean literally: a bag full.

After the Fatigue Centre I had my blood shot and quickly after that Abunai came around the corner and then my leg went in a complete cramp. Just doing the normal daily things was hard enough as it was with this leg, so I was first recovering from that for a week, before starting something new.

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

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

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

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

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

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

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

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

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

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

Having these options have calmed me down a bit, but it still needs to sink in. So we decided to start next week, so I won’t stress out too much. In the meantime I’ll keep busy with some other things that also need to be done to help my recovery, so I’ll keep on moving forward.

I’m sorry if this was a messy blogpost. I can’t really tell if it is at the moment, because I’m stressed out about this change of routine in the future.

Double Trouble

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

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

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

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

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

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

I hope I didn’t offend anyone with this. If you’re this person and you’re reading this: I’m so sorry! I had no idea what to say or how to react. I’m not offended by you in any way.

If you weren’t pulling a prank, then it might be that you were as much frozen as I was. If that’s the case, then I’m sorry if I made it worse.

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

Paralyzed by sound

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

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

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

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

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

In reality all of this just happened for a few seconds, but it didn’t feel like just seconds to me. This is what a bass sound does to me. Normally, when it’s hidden within a song, it’s not this extreme, but if I have to be in a disco for a longer time, it does make me feel awful. The feeling the sound of this pure bass gave me explains why a bass hidden in a loud song in a disco can have terrible effects on me in the long run.

My sister told me that I should try and put in my ear plugs in the disco next year. I might just try that and see if that makes it better for me.

Abunai - 3

This is the third of the three blogposts about Abunai (the biggest Anime/Manga convention in the Netherlands). You can find the first part here: http://thedailydaysofanasperger.blogspot.nl/2012/09/abunai-1.html
You can find the second part here: http://thedailydaysofanasperger.blogspot.nl/2012/09/abunai-2_3.html

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

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

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

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

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

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

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

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

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

I’m already missing Abunai and am pretty down about it. I miss being around my friends, I miss feeling useful, I miss feeling like I can take on the world… I miss Kansas. (again, the definition of Kansas: http://lifeontheothersideofthewall.blogspot.nl/p/glossary-of-life-on-other-side-of-wall.html )

Most of the people who go to conventions (or who know the feeling of Kansas) know this feeling. Us convention-people call this the after-convention-depression. It’s okay, it’s positive in a way. Every high has a low. Having something to miss THIS much, just means that there’s something WORTH missing this much, which basically means there’s something great in my life. I wouldn’t give this up for the world. On to the next convention!

Abunai - 2

This is the second of the three blogposts about Abunai (the biggest Anime/Manga convention in the Netherlands). You can find the first part here: http://thedailydaysofanasperger.blogspot.nl/2012/09/abunai-1.html

Well, we all know what happened that night by now. If you’re new to my blog, this is what I wrote that night: http://thedailydaysofanasperger.blogspot.nl/2012/08/a-great-day-ends-in-great-disaster.html and if you’re wondering how the health story continues, as I’m not writing it again, here it is: http://thedailydaysofanasperger.blogspot.nl/2012/08/small-update-because-im-too-tired.html

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

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

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

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

Abunai - 1

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

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

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

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

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

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

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

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

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

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

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