Orthodontist 2

Today I continue on the subject of the orthodontist. Like I mentioned, yesterday they got my braces out, which actually took me 2 appointments. Did it hurt that much? Well, yes. But that’s not the (only) reason it had to happen in 2 appointments.

A lot of people say taking braces out isn’t even that painful. Well, it is to me. I cried and had to take a break with every bracket that came off. But like I said, that wasn’t the biggest problem. After the brackets were taken off, she had to drill/grind the glue off. This didn’t hurt that much, but it made a loud shrieking noise and it vibrated a lot. This sensation, so close to my brain and ears, affected my whole system. I would say the noise ‘hurt’, but it didn’t hurt somewhere specifically. It’s hard to describe. Maybe it’s like when someone keeps on running nails over a chalk board? But I’d even take that over this drill…

And there was just 1 other option to this drill (which also only applied to big parts), which is chipping it off with a long kind of hook. This did take the terrible sensation away, but replaced it with a big physical hurt. I didn’t always quite know which I thought to be worse.

I got to say though, unlike the orthodontist, this assistant who was taking out my braces, was much nicer. She DID take notice to my sensitivity. (seriously, the one time I get the right person is when I decide to take it out…) She told me she had to do this, but I could take a break any time I wanted. I just had to hold up my hand and she would stop right away. My mum was beside me the whole time to support me too.

The first time it took me one and a half hour just to get the bars in that would hold my teeth straight, and to get my lower brackets out. (I was told the WHOLE procedure normally takes about an hour)

I simply couldn’t take the grinding noise and vibrations anymore. It seriously got me SO overloaded, I felt like I just walked into a disco with maximum volume and lots of flashing lights and I was right next to the music box and that for one and a half hour.

I couldn’t take it anymore and told them, in tears and breathing heavily like I just ran a marathon, that I would like to make another appointment. They understood and nodded.

For yesterday, my jobcoach had the idea that I could put in my mp3-player to ease the overload. This worked like a charm. I still HATE the drill and even today was a complete torture, but the music did make it a bit easier. It made it so I could at least complete the procedure without being in a complete panic. Of course, still with lots of breaks.

In conclusion, today’s blogpost is more about overload than about pain. In this case overload by noise and vibrations. This kind of overload can take over and cause my body to just want to run away. Everything inside me cramps up, even hurts a bit, and just wants to run away from whatever is causing the overload. It’s a terrible feeling and leaves me exhausted for the rest of the day.

Orthodontist

Today I went to the orthodontist to get my braces out. I went last week too, but I couldn’t take it anymore, so I had to make another appointment for the second part.

Remember that I spoke about sensitivity to pain and also mentioned my sensitivity to loud noises? Now think about what an orthodontist does to you. I hate the dentist too, but in my opinion an orthodontist is even worse. On top of that, I had a terribly inconsiderate orthodontist too.

When I started there they said I’d probably be done in 1 and a half years and they started with some iron thingy to widen the upper part of my mouth. Suddenly one day they said ‘Okay, make an appointment in 6 weeks and you’ll get your upper brackets. I was shocked, since nobody told me I was going to have brackets in the first place and I told them this. They told me they thought it was logical. I told them it’s not to me and that I’d like to know these things.

Later I had my upper brackets and I was told ‘Okay, now make another appointment in 6 weeks and you’ll get your lower brackets.’ Again, shock and I had the same conversation.

At this point it’s 1 and a half years later and I just got new braces instead of being rid of them. Suddenly they told me ‘Okay, make another appointment in 6 weeks and you’ll get your rubber bands.’ Say what? I was starting to get annoyed at this point.

In the meanwhile, I had numerous check-up appointments too. In these appointments, they were quite rough. They seriously hurt me a couple of times. For example, I have irritated gum. To show me how to brush better, they got a hard brush out and quite roughly brushed it, until everything was bleeding and hurt and I was in tears. Irritated gum that’s bleeding is normal, but my whole mouth was red and it was hurting A LOT. That’s NOT normal. I got angry every time and told them I was very sensitive because of my Asperger’s Syndrome. They kept saying sorry, just to do it again the next time.

One day I got seriously angry. I was in tears and told them to quit it and just listen! They all stood around me and I told them, in tears, the whole above story. They said sorry again and promised me to put my Asperger’s in the computer. I thanked them. The next time it happened again and I asked the person treating me if she checked my file in the computer. She said ‘no, should I have?’ YES YOU SHOULD HAVE. What is the use of a file for a patient, if you’re not going to check it before treatment?

I got genuinely scared of that place and the only other orthodontist practice we have nearby was fully booked. So I didn’t go back there for half a year. Bad, bad… I know. Since I was nearing the end of my treatment anyways, my mother decided enough is enough and she phoned the practice to make an appointment to get the damned thing out. We did agree to put in something behind my teeth to hold it in place.

Since this blogpost is getting long, I’ll talk about the pain and sensory issues of the treatment that actually got my braces out in the next post.

With this post I just want to say: All doctors, orthodontists, dentists… well everyone in the care sector! Please, if anyone tells you they’re very sensitive and that you’re hurting them, please believe them! If you’re going to simply ignore it and treat them like they are just whining, you might be scaring away patients who need your help very badly. I understand some things just need to happen, but please comfort them and try to think about how you can at least reduce the pain.

In any case, DON’T IGNORE IT! Talk with your patient.

Of course you have a lot of patients and it’s hard to remember everything about them. But write these kind of things down AND read your own writings! You went in the care sector to help people right? Not to torture them. You can make a difference.

Pain

All my life I’ve been very sensitive to lots of things. Pain is one of these things. A lot of people think I’m weak because of this, but I can’t help it. Whenever I’m in pain, that takes up all my attention. I usually immediately try to find a way to ease, or even end the pain.

Yesterday I managed to cut myself on the crust of a loaf of bread. This might seem weird, since bread is usually spongy, but fresh bread can have a kind of spiky crust sometimes. It’s hard to explain and I can’t find a picture of it, so you’ll just have to trust me on this one.

The cut was very small, but it ran deep. I didn’t cry, since it was a small wound, but did put a band aid on it. Since it ran deep, it hasn’t fully healed yet today. It stopped bleeding, but it’s still very sensitive and fragile. I wanted to take a shower today, but I didn’t know how to, since water on my wound hurts like hell. Some people tell me to simply ‘suck it up’ and just get under the shower, but how am I to withstand a lot of pain for about 20 minutes?! (I take long showers, 20 minutes is the fastest I can do… I might write about my speed with things in another blog)

People have told me to put a plastic bag around it, but I’ve tried that before and that condensates, which hurts a lot. Keeping my hand outside the shower would put me in a position where I get very cold and have to wash with one hand, which is a big hassle when putting on shampoo. And there were a few other ideas that didn’t work out. In the end I decided to wash myself with a washcloth today to stay fresh and I’ll take a shower tomorrow.

This is just an example of what my sensitivity to pain can cause. Like I said, a lot of people think I’m weak, or they call me a whimp. I’m even being told I should ‘get over it’. But I seriously wish I could. I seriously wish I could ‘just get over it’. Then everything would be much easier. The above example isn’t even the worst example.

I’ve had to get my braces out in a double appointment, instead of one, because I simply couldn’t take it anymore and went home crying and totally exhausted. (my second appointment is this Thursday) There are many more examples like this, showing that I’m not just overreacting or anything, that I wish I could ‘just get over it’ too. So please, whenever someone tells you something, that wouldn’t hurt that much if it happened to you, hurts a lot… Maybe it really hurts a lot.

To balance my blogpost out and not make everything one sad post, I’ll shed some light on the nice part of this all. Nice part? Yes, there’s a nice part. Being very sensitive to pain, also means being sensitive with touching things. This can be very nice when something is very fluffy.

One day I made a dough for a type of cake and that dough was VERY fluffy. It’s the most fluffy dough I’ve made so far. I loved it, it felt like a bowl of soap! (Don’t worry, I disinfected my hands before I started baking) I had lots of fun making this dough, because I enjoyed touching it a lot. Ever had a very fluffy blanket? Like in a hotel or something like that? And did you ever go laying down in a bed with such a blanket after a very tiring day? It’s heaven isn’t it? It’s like that.

So being very sensitive to a lot of things, in this case pain (I’ll blog more about other things I’m sensitive to), can be a pain in the… Sorry bad joke… can be very annoying. When something hurts someone who’s very sensitive to pain, please just believe that person and tend to the pain, instead of acting like that person is overreacting.

But being sensitive can be a joy too. Nice things can be even nicer.

Not much sleep

Today has been rather uneventful in terms of Asperger’s Syndrome. I couldn’t sleep well last night, which caused for me to feel just awful. Remember, I’m also Chronicly Fatigued. I decided I felt okay enough to try to go to work, but I’d have to take it easy.

Even so, I still felt awful. I got my keycard to enter the building and a few rooms (yay!), so that’s a plus. After telling my team leader about how I felt, I calmly got to my job. After about half an hour or an hour or so (I lost count), I suddenly got very dizzy, couldn’t focus anymore and started to cry. I immediately walked up to my team leader and told him what happened. At the same time my jobcoach arrived.

We had a good talk where I could tell what was on my mind and they told me I could just work to my own pace and we would see how far I could come. After a glass of water I felt a bit better and got back to my job at an even slower pace. Luckily today was a very calm day in terms of visitors needing things from me. It’s like the world just knew that I needed a calm day and decided to stay at home. In the end I did get all my work done. In fact, the last 15 minutes I honestly didn’t have anything to do.

In terms of Asperger’s Syndrome, there was only one thing really bothering me. Because I was so tired, all noise came in much harder than normally. At work they blend ice to make smoothies and things like that and those blenders make a lot of noise. But that was the only thing really bothering me, causing me to get distracted sometimes (to the annoyance of some clients. Sorry!).

Well in the end I did manage to get some kind of blogpost done, but it’s more about my Chronic Fatigue than my life with Asperger’s Syndrome. In the sense of Asperger’s Syndrome I can only say what I stated before; a mentally and/or physically bad day can really make a difference. Suddenly I get overloaded a lot faster and I get wrapped up in my own little world, just trying to focus on getting through the day. Can’t wait for a better day to shine again!

Travelling by train

In my last blogpost I wrote about my troubles with travelling by plane and how I dealt with that. Now I want to talk about travelling by train.

Today I went travelling by train with my sister all day, with an all-day-train-ticket. We didn’t even make a plan for today, we only knew that we wanted to visit Schiphol again just for fun, but that’s all we knew. We just made our route up as we went. Pretty relaxed isn’t it? I wasn’t always like this with trains.

Truth be told, I haven’t travelled by train on my own until I went to bakery school (which is about 2 to 3 years ago). Even then I could only travel the bits that I already got used to, every new piece of track was cause for big stress. Especially when I had to transfer trains I was so nervous, I kept staring outside, looking for signs on train stations that I passed by, telling me how much train stations I was away from my transfer.

One day, which was still somewhere in my first half year in bakery school, a lot of snow fell. Well, a lot for The Netherlands. It was pretty unexpected snow, so all the trains had difficulty driving, making the whole schedule non-existing. You just pretty much had to ask the train driver, of the train that just arrived, if it was the right train. An usher on the platform told me which train to take and that I had to make a transfer. I was very nervous in the train and kept looking outside. Then I saw that my train didn’t stop at my transfer! I’ve been told wrong! This was cause for me to cry and ask other passengers what I should do to arrive at my destination.

So how did I just spend a whole day in the train, not even knowing where I’ll end up? This is due to my ex-boyfriend. I was together for more than a year with him and he was/is a big public transport fanatic. He especially likes trains. At the beginning of our relationship, he really liked for me to join him on a whole day of riding a train. I loved to join, but sadly told him why I couldn’t. He felt bad for me and started to make a very detailed schedule, color-marked and everything, of where we would be going, in which type of train, at which times. He even made a separate schedule for when we would miss a train. Besides that he explained a lot about train stations and how to find your way there and he showed me an application on his Smartphone that helped him plan his train routes. Comforting me like that, he took me by the hand and took me on my first all-day train ride. During the ride he told me a lot about trains. In fact, I now probably know more about trains than the average person, haha! But that’s good, there’s comfort in knowledge.

We took a few more train rides like this and after about half a year, I started to get more comfortable with the  train. At first I didn’t dare doing such a thing without him. As soon as I had the budget for it, I purchased my own Smartphone, which would help me. But not just with trains, but with navigation everywhere! I love my Smartphone, it’s a lifesaver, it truly is.

After I purchased my own Smartphone, my sister decided to join my ex-boyfriend and me too. I started getting comfortable in travelling with her too and suddenly she and I had a few days of travelling by train too. One day my ex-boyfriend asked me ‘Where shall we go?’ and I said ‘Honestly? I don’t believe I’m saying this, but I don’t care… Let’s just travel and see where we’ll end up…’ I never saw him more surprised! He was happily surprised though.

This is how I learned to travel by train on my own. I can’t stress enough how important it is for most people with Autism to be calmly and well-informed introduced into something new, especially if they’re very nervous about it.

On a different note, since I talk a lot about my sister in my blog, you might be interested in her blog too. Her blog is in English. She talks about her life in general (so not a specific part of it). http://designy88.tumblr.com/

Here’s a little something for my creative Dutch followers: If you’re Dutch and very creative, you might enjoy this blog: http://mijncreatievewereld-annerieke.blogspot.com/

The blog is made by Annerieke. She helps out as a volunteer at the weekly Autism Meeting (Chill Aut) and makes the most beautiful things.

Vacation

So… My sister and I will be going to England from the 4^th of June ‘till the 8^th of June. We will be travelling by plane. This isn’t entirely new to me, as I’ve travelled by plane to Germany (Berlin) and Japan (Tokyo). It IS the first time we’ll be travelling without our parents though. This has been a cause for stress for me, since it brings all kinds of new and, sometimes, unpredictable things I have to deal with.

Up until now my parents have planned out the holidays and I just followed. Of course they asked us what fun things we’d like to do and if we even like the place they’re planning to go to, but they’ve pretty much planned all the practical stuff. Now, I know how to book a hotel. I’ve done this several times for conventions. But the real big problem is how the airport, both in England and in The Netherlands, and the public transportation in England works.

A lot of people tell me it’s easy, the signs will simply tell me where to go and what to do, and I’ll find my way. But have you ever noticed how busy everything is at an airport? Not just the HUGE crowd of people, but also how many signs there actually are! And some of them are electronic and even change slides once every few seconds. Because I process information slower, I also read a bit slower, especially when it comes to finding that one piece of information that I need. When I get halfway this one sign, it moves on to the next slide! Then I get halfway that slide and it jumps back to the previous one. Then I have to find out where I ended the first time and then hope to have time left to read even more.

This is just one sign… And there are a lot of those! On top of that, you’re in a hurry of course. You’re trying to get to your gate in time. So everyone travelling with me is way faster with sorting everything out and they’re not planning on waiting for me, since there simply isn’t any time left.

All this has usually caused for me to just let my parents find their way and I would trust them to get me to my destination. But now I’m alone with my sister and it’s becoming very apparent how little of a help I am at this point. Also, I was getting so much stress, it was hardly worth the vacation anymore.

So my sister decided to take me to Schiphol (a Dutch airport) a month before our vacation and show me around with all the time in the world. We wouldn’t be able to check everything out, seeing there are parts you can only see after you’ve checked in, but we would be able to see a lot. We went there by train and had a look around.

Upon arriving, my sister started by showing me which signs showed me the right directions. We created a scenario where we would be getting on the plane to England that day. Of course we wouldn’t be getting on the plane, but it was just to help me find information faster.

After explaining the signs to me, she told me we needed hall 3, since that’s what the website told her, and she told me to find it. I found the hall. In the hall we took our time with the electronic signs, searching for the right check-in counter. Once I found the right information, she told me what all the codes next to the name of the city meant. Then she had me point out the check-in counter we needed. Once we found the counter, I had a look at all the signs there and found out which lane we would need. For some last question my sister had herself too, we asked a lady at a client service counter. She told us everything we needed to know.

This look-around was very effective, since I’m now confident I can find my own way around an airport too. Knowing this has relieved a lot of stress and doom-scenario-thinking from me. Now I can finally enjoy the idea of going to England with my sister in a month! I can’t wait!