Monday, 30 July 2012

Fatigue Centre

Lately I’ve been trying to get help at the Fatigue Centre. This has proved to be a lot more of a hassle than I have ever anticipated. It started when I didn’t understand how to sign in there. There was a button ‘signing in’, but that just explained what would happen after I signed in. So I called the centre itself. They told me there was a button ‘sign in’ somewhere on the website too. This was the actual button I needed. Since the buttons had such a similar name, I thought they would lead me to the same page, that’s why I didn’t try that second button before.

While still on the phone, I asked what would happen after I signed in. They told me I had to fill out some forms and then I’d get an intake interview. That sounded fine, so I went ahead and signed in. There were a lot of forms with a lot of questions (even the e-mail address of my insurance company…), but I tried my best and filled them all in, spread out over a few days.

After I filled all the forms in, I got a mail stating that I should keep a daily log about my activities and that I should get a blood shot for lots of things and that having it done before 6 months ago, wouldn’t excuse me from it. They didn’t tell me this before! I’m very afraid of needles, well any pain really, and the medical tests I had the first time at the hospital already had me have a lot of blood tests (I stopped counting after 12). This took SUCH a toll, that I swore that that was the last time. Now it suddenly appeared in my mail box and what’s worse: This isn’t what they told me! Also, they made it very clear it’s very important for me to keep my daily log. But there’s a reason I didn’t even make this blog a daily thing and that plants die on me… I have big problems with doing daily things that don’t always keep my attention. With that I mean that something like a job isn’t a problem to remember. That’s always there. But something small that doesn’t demand that much attention, is easily forgotten. What if I forgot my daily log? Will they get angry? Oh God…

Today I got a call from the centre. They were already ready to make an appointment for an intake. I told them that wouldn’t give me enough time for the blood test. They said that that was fine, that I could have that done after the intake. So I guess it’s suddenly not that important to have it before the intake? I don’t get this anymore. I also told them that I have Asperger’s Syndrome and that I was told that I could fill in the forms and would then immediately be asked for an intake, but suddenly got a mail telling me to get a blood test and keep a log. I said that that wasn’t what I have been told and that I was quite shaken by it all.
The person on the phone simply answered with: “Well, that was on the website.” I told her that I must’ve read passed that then, but that the person on the phone didn’t tell me this. She answered again with: “Sorry, but it’s on the website.”

Afterwards, my mother and I checked the website. We couldn’t find it anywhere.

I got a mail confirming the intake and with lots of information. The information stated that if I cancel my appointment a week ahead, they would charge 50% of the money. If I would cancel 3 days ahead, they would charge 75% of the money. Also, being too tired to be able to show up, isn’t a reason to cancel in their opinion. (Note: I need to get to a whole different city for these appointments! How am I going to get there if I have a very bad day, where I can even hardly get myself to the fridge or the toilet?)
What makes all of this even more confusing, is that the website and the form in the attachment of the mail says that cancelling TWO weeks ahead, where the mail itself said one, would result in charging 50%.

My mother checked a client’s comment online and the client said that she felt very understood there, but at the same time that they could get pretty upset if you didn’t hold to your daily schedule every single day.
Oh God…

My mother told me that she heard someone else say that at the Fatigue Centre you usually get a certain amount of activity points that you can spend every day. She warned me that these points might not be enough to be able to go to events.

Wait. Hold it. Not going to events? So the single thing I have left in my life to keep me happy and to keep me confident about my abilities, might be eliminated for a long time? No, I refuse that. I think my health is very important, but so is my mental well-being. Events are my Kansas (definition of Kansas: ). Events keep me going and keep me confident and it’s where I get most of my friends. It’s where I do most of my socialising. And above all: It’s what got me out of my major depression I had before I started going to events.

All of this has made me very afraid of this centre. I feel as though they don’t care about my feelings at all, as long as it gets me better. That I’ll crumble emotionally, doesn’t seem to matter. Also, they seem to be planning to throw over my day planning completely and replace it with theirs, which is a major change for me, but if I can’t hold on to it every single they, they get upset with me? I feel like I’m just being set up for failure here. It seems like nothing fits to my psychological needs here. How am I to keep to their schedule, when I’m crumbling inside from all the sudden changes in my life? And then to endure them being upset over it too…

I’m scared.

Thursday, 26 July 2012

Just going to the toilet... Right?

This evening my sister and I went to the cinema to go see the movie Brave. (That movie is amazing! If you haven’t seen it yet: go see it!) Afterwards, we thought the weather was way too nice to go home. The sun was going down, so it wasn’t that hot anymore, but it was still warm enough to walk outside without a jacket and a light breeze was blowing. Perfect! We went to sit down, with our feet in the water. (we have a lake next to the city)

The combination of a lot of drinks during the day, the salty popcorn and sitting at the water, got to me and I suddenly needed to go to the toilet badly. I simply went to the nearest cafĂ©, since I was in a hurry. My sister stayed outside and I went to the waitress standing inside, near the door. The waitress was busy with her little electric devise, going over some orders. I never know how to politely let someone know that I want to start a conversation, so I usually just start one, hoping for the best. I asked: “Excuse me… May I use the toilet, please?”

Then… nothing. She didn’t blink, she didn’t nod, she didn’t say “Just a moment please”, she didn’t acknowledge me in any way. I said: “Erm… miss?” And she still didn’t say anything. Everything inside me panicked, as I had no idea what the waitress wanted me to do. Maybe she thought I was being rude, maybe I simply needed to wait, maybe she was deaf, maybe she didn’t hear me, maybe… My brain went in overdrive, trying to analyse what just happened.

I started to panic and looked over the waitress’ shoulder towards my sister and shrug my arms as to say: “What do I do?!” She shrugged her arms back and then calmly waved her hand downwards as if to say: “I have no idea, but maybe it’s best to just wait.”

About a minute later (which is long if you’re waiting for a response) the waitress looked up and said in a sharp tone, but with a smile: “YES miss… Can I help you??” I was startled by this very obvious fake politeness, which just seemed to scream “RUDE” at me. I decided to act like I didn’t notice, as I didn’t want to cause unnecessary trouble and asked again: “Yes, may I use the toilet, please?”

She started: “Well, generally we don’t allow people who aren’t costumers…” (This is freely translated. She said “In principe niet” which literally translated means “In principle not”, but I didn’t feel this was a proper translation.) To which I quickly, since I really needed to go, said: “I’m willing to pay?”
She frowned and answered: “I said GE-NE-RAL-LY, which means I’m allowing you to go, but next time please use the KFC or something.”

This startled me again. What was the need for all this rudeness? If at the beginning she simply answered; “Just a moment please” I would’ve just waited. If she just answered “Yes, you may, but just this once”, or “No, sorry, we don’t allow people who aren’t costumers, but you can maybe try the KFC?” then I would’ve simply gone to the KFC.

This is what happens when someone isn’t being clear about what they want from me. It gets me all confused and panicking and my mind will start going into overdrive, trying to figure out what is being asked from me and how I should respond and what that person might be thinking and so much more. Everything just turns into this big mess in my head and I won’t be able to come up with a proper answer in time anymore.

If anyone is wondering: Yes I did go to the toilet. After that, my sister and I went straight home, as I couldn’t enjoy that place anymore that evening and I got way too self-conscious. For the rest of the evening I just want to do some stuff on my laptop. Tomorrow’s another day. (This isn’t to say my whole day was bad. It was actually a very good day. I just wanted to tell what could happen if a situation isn’t being made clear.)

Wednesday, 25 July 2012

A staple and into the city with a friend

Yesterday I had a sort of ‘business meeting’ planned for the event I’m working on. It wasn’t exactly ‘business’, as we’re all volunteers, but you get the idea… One of the board members couldn’t make it, because she fell ill. (get well soon!) My best friend, who’s the chairman, and my sister did come to the meeting.

Last weekend I spent a lot of time working on papers for this meeting. Well, I worked together with the rest of the board, but I was the one typing it out. I must say, I was pretty proud of the final product and was happy to print it all out and staple it together. While stapling, I managed to staple in my index finger. Just one side of the staple and it didn’t fold over, so I could easily get it out of my finger, but it hurt like hell, since it went in pretty deep.

As soon as I hurt myself like this, all my attention turns to getting rid of the pain as much as possible, as I’m very sensitive to pain. To most things actually… While panicking a bit about my pain, I also tried to figure out on how to hold a professional meeting, while still in pain. Luckily the pain quickly got less, since it was a puncture wound, which heals quickly. It also turned out that flapping my hand greatly reduced the pain even more. If I would just keep on flapping my hand and explain people why I did that, I would be fine. (I’m trying to avoid typing with this finger at the moment, since bumping it into something still hurts a bit. That’s difficult if you’re used to typing with all fingers…)

I got my jacked on and my little bag with me (I have this bag that I always keep with me, as it holds all the stuff that I could need in a day) and got into the car. My sister drove us there and I was still focussed very much on my pain and the flapping of my hand.

During the meeting, they started talking about the papers I worked on. Suddenly I realised that I completely forgot about them. They were laying on the table. Stapled. Ready to be taken to the meeting… And I forgot them. Everyone understood and I was quickly forgiven, as I was still in pain, but still… I felt ashamed and I also felt a bit bad about working so hard on getting a paper ready and then not taking it with me. I still have these papers at home now.

After the meeting, my best friend and I went into the city centre. I needed some stuff for the weekly autism meeting and for my sister, and I just dragged him with me for company. We were both in the mood for some laughing, after a long meeting. I knew that I would need quite some time in the city, so I wasn’t looking forward to all the tiredness that I would feel eventually. That’s part of why I dragged my best friend with me.

While in the city, we had some good laughs. We laughed about parts of our past and we laughed about some funny stuff they were selling in a cheap store. We had a great time. Before I knew it, a lot of time had passed and I still didn’t feel all that bad. I guess this is a small example of Kansas. (for a description of Kansas, see Aaron Likens his glossary. It’s not about geography: Glossary ) That time passes when you’re having fun, is a common given. But now I also lost very little energy, while spending a lot of time in the city. This is the second time something like this happened in a short period (see: A fantastic day! ). A good sign maybe? I hope so.

I thanked my best friend (and I will thank him again: thank you!) for taking the time to distract me from having to go into the city centre.
He recently got new shoes, so walking in them for that long was hurting his feet. We decided that he would sit at my home for a little while to rest. My mother seemed to pick up on the great day I was having, so she offered him to stay and eat dinner. He happily accepted, so the fun time was extended for a little while longer.

About an hour after dinner, we both agreed that the day should come to an end, so my sister drove him to the train station and I went along. At the train station we said our goodbyes and that was the end of a great day. That’s okay, everything should come to an end at some point. I do wonder if I’ll have more of these days where my Chronic Fatigue doesn’t seem to bother me that much in the future. Do I dare hope?

Monday, 23 July 2012

Bus troubles

There were some things that I needed from the city. After that I had physical therapy, which would cost me a lot of energy already, so I decided to take the bus into the city to save up on some energy. In retrospect I should’ve taken the bicycle…

I got my things together and went outside. It was pretty warm outside, which I didn’t expect, so I wasn’t really dressed for the occasion. On the way to the bus I took off my jacket. The electric sign at the bus stop said that it would be just 5 minutes until the next bus would arrive. Perfect. I sat down and waited. And waited… And waited…

The electric sign started to say that there was a bit of a delay and added another minute… A minute later it did that again… And again… In the meanwhile people started to gather around the bus stop and I started to get a bit restless, as I didn’t know if the bus was going to show up at all anymore.

Two busses drove by on the other side of the road and still there was nothing for us. Then a 999 ‘out of service’ bus drove by. The reason for it to be out of service can be anything, but most of the time it means something happened (at least around here), so I got even more restless. Then another 999 drove by. A few minutes later a fire truck drove by. Now I was sure something must’ve happened.

It was 20 minutes later since I first arrived at the bus stop, that a bus finally arrived. For some cities this is a normal waiting time, but not where I live, so everyone was in a bad mood. When the bus opened, it quickly became clear that indeed there was a bus that broke down just a few stops back (we were near a turn in the road with bushes and trees, which we couldn’t see around, that’s why we didn’t know sooner).

I let the people around me go in first. The last person to enter the bus, before me, was a man. This man wasn’t fat, but he was a bit bigger built than the people in front of him, so he gently moved a perambulator (you know, a thing where you can lay a baby in and walk around with it…) just about 5 cm to the side, so that he could pass. I didn’t think anything of this, as he was so gentle, even the simple act of walking the child over a sidewalk with some loose stones would cause more trouble than the gentle movement that man caused.

The mother of the child, on the other hand, had a totally different view on this. If looks could kill, that man would’ve died a horrible death and she said: “What do you think you’re doing?! That’s a living thing in there you know! You don’t just shove that to the side!”
The man looked at her, completely perplexed, and said: “Well… I just needed to pass.” After this the woman kept telling him he was wrong (while I entered the bus too) and she went on, yelling about how people should realise that the bus was full and that we should’ve just waited for another bus. I got very anxious of this woman and wanted nothing more than to just leave the bus. The only thing was, I had physical therapy planned after my trip to the city and couldn’t afford to wait for another bus, if one was coming at all. Also, I was on the bus to save energy, not to waste same more.

The man somehow remained calm and asked her why she couldn’t leave the bus herself if she was this bothered by the crowd. She told him she had a baby with her and that she was one of the people in the broken bus. I didn’t see how being a person in the broken bus would give her more reason to enter that bus than us, as we would have to wait the same amount of time as her. It’s not nice to be in a broken bus, but that doesn’t give you more rights to the next one. Having a baby might, but she has no idea what the reasons of the other people are for entering the bus! Somehow she claimed all the right to the bus and we should’ve just stayed away and she just didn’t stop ranting to this poor man about it. The man simply listened, hoping that she would quit. She didn’t.

This is where my frustration won the battle with my anxiousness. I had had it with this woman who somehow seemed to think she was the most important person in the world and everyone should just give her space, just because her baby got moved very gently for 5 centimetres. I said: “Well sorry miss, but I’m Chronicly Fatigued and was taking this bus to save energy. Instead, I’ve waited 20 minutes to just get on a bus, which has cost me a lot of energy I didn’t account for. If I had to waste more energy, I wouldn’t be able to do anything after going into the city anymore. So no madam, I’m not intending to leave the bus, thank you very much.” She looked at me perplexed and said: “Well… Excuse me madam…”

I didn’t care anymore. At least she didn’t say anything anymore for the rest of the bus ride. She had upset the whole of the bus and I would have none of it. I do agree people are allowed to speak up for themselves, but you can’t just demand the world for yourself, just because you have a baby, if you have no idea what the others are there for. Besides, there was plenty of space in the bus for even a few more people (I even managed to take a seat!), after that baby was moved just 5 centimetres to create a bit of walking space to walk towards the open spot.

This whole ordeal had left me with a lot of emotions and very little energy. I was very restless and nervous, as the crowd and the woman had a great impact on me. I was also very angry at the woman and I felt bad for the poor man who got a flood of words over him for a simple act that harmed nobody. I bought my stuff in the city while still shaking. After I was done buying my stuff, I asked my sister to pick me up by car, as I didn’t dare hope for another bus again for the rest of the day. This also bought me some rest time at home before going to physical therapy. I’m glad for that, since I had no idea how else I was supposed to get that much needed resting time.

Such a small thing as wanting to go into the city for 30 minutes turned into all of this. This is how fast a day can sometimes suddenly turn around for me…

Friday, 20 July 2012

The concept of 'death'

Yep, I’m going to touch a sensitive subject for some people here and for some friend of mine this blogpost will be a hard one to read. For my friends, here’s a warning: If the death of Rob still hurts you too much, you might not want to read this blogpost.

This morning I’ve received a phone call from a good friend of mine who said that his grandma has passed away. My heart goes out to him at the moment.

I don’t want to talk about him specifically, as I want him to mourn in peace. I do want to talk about what these kind of things do to me. The concept of death has always been a hard concept to deal with for me. Whenever someone tells me that someone they knew, be it a relative or a friend or an acquaintance, I always lock up. Of course I’ll give my condolences, but when it’s a friend telling me this they usually expect a bit more comfort than that. They usually start telling me a bit more about this deceased person.

I do understand this and I’m more than willing to help, so I usually just listen to what they have to say. But then I have to say something back, and… I lock up. I have absolutely no idea what to say at this point. They are probably expecting me to utter some words of comfort, but I can honestly say that I have none.

You’re probably wondering, by now, where this locking up comes from. Well, it’s not that I’m emotionless. In fact, it’s the complete opposite. You see, whenever I need to understand how a person is feeling, I usually go by the sentence: ‘Well how would you feel?’ In other words, I try and imagine myself in the same situation and wonder how I would feel. This obviously works best when I have been in the same or a similar situation and I felt similar to what that person is feeling. Only, when I haven’t been in the same or a similar situation or I didn’t feel similar to what that person is feeling, than this becomes a lot harder. It’s not impossible, but very hard to try and understand that person then.

Now, how does this work towards a person’s death? I have actually lost two people who were close to me in my life. The first was one of my two grandmothers, but I was too young to still remember a lot about this. I do remember that I have been sad for about three months, but I can’t really tap into those emotions anymore. The second was a friend of mine who committed suicide, which was actually about 4 years ago. This was actually a very weird time for me.

Suddenly not being able to talk to this person and not seeing him walk into a convention was a very weird change for me. I did cry a lot, but I was also in a sort of panicky state. I didn’t know what to do with these emotions besides crying a lot. I had no words to speak, since things were as they were. All there was, was sadness and the weird sense of expecting him to pop up at any time. At some point I actually felt SO sad, something weird happened. I didn’t know what to do with these emotions, so I… simply didn’t. I didn’t do anything with these emotions. I couldn’t get myself to go to his funeral, since even the thought of him death was something I couldn’t process yet. A death is a change that I simply can’t handle. To me it’s the saddest thing ever and that’s all it is. One big lump of sadness. And I just have no other words for it.

So this is also all I can think of when someone tells me someone died. I just imagine this big lump of sadness and, just like for when it happens to me, I can’t think of anything than giving my condolences and be sad for them. I have no words of comfort. “Things are as they are. It’s just sad really and that’s what it is.” These are the words I uttered to this friend of mine as a way of showing that I do understand him somewhat. I don’t think these are the most comforting words, but it is the way I see it. I have no idea what else to say.

So yes, I AM saddened by someone dying. In fact, I’m SO sad, that that’s all there is. A lump of sadness. But I don’t know the words to go with the feeling. So if you ever tell me that someone close to you died and I tell you something like that, than that’s me trying to understand and comfort you. I’m sorry if it’s not the words you were looking for.

Another beautiful day

The day actually didn’t start out as good as the title suggested. I got woken before my alarm clock went off by work that was going on at the house next to us, that’s getting prepared to be sold. There was drilling and hammering going on. This sound was as bad as when I would stand next to the music boxes in a disco. It went right through me and immediately my good mood from yesterday vanished from the face of the Earth. All I knew was that right then I was being attacked to the inner core of my being by this awful sound. Luckily I have earplugs in my bedroom for these kind of things, so I put them on. Still, the sound was so loud, I was even bothered by it with the earplugs in and even if I wasn’t, I couldn’t keep on sleeping anyways, because I wouldn’t be able to hear the alarm clock and I had an appointment.

So after I somewhat recovered from the first shock, I went downstairs with a terrible mood. After trying to endure the sound (through the earplugs) for a while, I decided to get into town early, because I thought even the city would be better than more of this. I went to a bakery to treat myself to something nice for breakfast to lift my mood. Right before I ordered, some road crew workers decided that was a good time to start drilling away some of the pavement. Yea… City… I ordered my food and took it inside the train station. Yes, the train station, at this point, was even a better place than the city centre and my house.

After I finished my breakfast, my friend arrived for the appointment. We both complained about life while walking to our appointment. As luck would have it, the person we had an appointment with ran 30 minutes late.

“So how is this another beautiful day?” you might wonder. Well, this is where the day started to get A LOT better. Our appointment we had was to find, both financial and in advise, help for the charity event for autism we are putting together. We explained our idea and the person we had an appointment with was immediately taken by our plans! He loved it! So we came to an agreement and now we’re working together with that foundation. With their help, we can probably realise most of the plans that we came up with!

This made me so very happy! And not just this, but the fact that this seems to happen a lot with this event. The moment we tell about our plans, it seems that people can’t wait to help us in any way they can. We get so much offers of help, that we even have to say to some people that they’ll have to wait, since there is so much we still need to work through!
I’m so moved by this. People are truly lining up just to be a part of something great and something that can truly help people who need it. I want to thank everyone who does their best in their own way to help make this world a better place. Take a moment to be very proud of yourself. You deserve it.

Being very pleased with both ourselves, that foundation we had an appointment with and the world; I decided I would treat ourselves to a nice and big lunch in the city centre. The place I chose for this has a nice terrace, but since it was still a bit noisy outside, we went inside. During this lunch we had a great talk. It has been way too long since we had a good talk, so we were both happy with this. It’s always great catching up with friends, even better with your best friend.

At the end of the lunch we were very pleased with how the day turned out and we were full of ideas for our event. (don’t you just LOVE an event going right? Well maybe not, maybe that’s just me… But I LOVE THAT! Seeing plans realised like this… Yay!)

I waved my friend goodbye at the train station and then I went to the supermarket to get some stuff for the weekly autism market tomorrow. After that I went home and… fell asleep. The moment I woke up, dinner was ready. As I have had a big lunch right before falling asleep, I wasn’t very hungry yet, so I couldn’t eat a bite. That’s fine, I simply didn’t need any. Feeling very sleepy still, I just checked my mail and stuff like that. Suddenly my phone warned me that I was too late for my massage! (thank you electronic agenda!) I jumped to my feet and stepped in the car (my sister drove me). In the car I called the masseuse to tell her that I would be late and why. I hate being late, so the whole drive there I was nervous as hell. Luckily she understood and simply went to do her job while we had a nice conversation. This lifted my nervousness and I just relaxed.

Now I might be very tired, but I’m also very satisfied with the day and very relaxed. My faith in humanity has gone up a lot today too. Again, thank you everyone who is making this world a better place. Keep doing what you do! Even if it’s not your job or something like that. Just offering to help, or even showing up at such an event… Or even if you’re just donating a little bit, or helping out someone who’s struggling with something, or simple stuff like that. We don’t just need the big things in life, but the small things count for a lot too, sometimes even more. Thank you everyone.

Wednesday, 18 July 2012

A fantastic day!

Today was just what I needed! My sister has been asking me to take her to a certain swimming pool for a few years now actually. This swimming pool is the Aqua Mundo in the Eemhof. Aqua Mundo is a great tropical swimming paradise. They have all sorts of things you can do there. One of those things is a fast water ride (I have no idea how that’s called in English, sorry people, feel free to tell me. In Dutch it’s Wildwaterbaan).
I’ve been there more often and have enthusiastically told my sister all about it and she wanted to go too.

Now I’ve finally taken her there. We had a blast at the swimming pool, especially at the fast water ride. We went at least ten times! There were a few times where we bumped into people and I’m sure I’ll be all black and blue tomorrow, but we had way too much fun to be really bothered for long. Usually these things would drive me crazy and make me very nervous, but I was too wrapped up in the activity, or rather, in Kansas. (I borrowed the definition of Kansas from Aaron. See the meaning of it in his glossary: Glossary )

My sister and I took out enough time in the day at the swimming pool, to be able to just take it easy. We even took at an hour to get dressed up afterwards. Being able to rest a lot and take it easy, made me feel almost, dare I say it, ‘normal’ at the end of the day. I did feel tired, but it wasn’t the usual devastating tiredness that usually rules my life at the end of a big day. It was just ‘normal’ tiredness, as everyone feels it. Just tired enough to close my eyes and even want to sleep, but no joints were hurting, I wasn’t so tired I was crying, I didn’t have an overload… Not any of this! Just, normal, plain, tired. I missed that feeling.

After swimming, my sister and I went to my favourite restaurant. We were a bit early, so we waited at a nearby beach, enjoying the calm, quiet and the soft breeze that was there. Then we went inside to eat dinner. This is an all-you-can-eat restaurant, so we ate until we were full. This restaurant can be a bit crowded sometimes, which can cause me to overload, but it wasn’t this time. Some days can be hard, but sometimes days just happen to work out exactly the way you want them to.

Afterwards we were both tired and full. But most of all, we were satisfied. We had a great day and are feeling great.

Monday, 16 July 2012

A little me time and some stuff to think about

After last Saturday evening I’ve decided to take some time for myself the last two days. The only thing I planned was physical therapy today. I used this time for a lot of thinking and processing and just doing things that I like to do, mostly on my laptop.

This processing time has been very good for me. The pain in my back isn’t gone yet and I’m still coughing once in a while, but that’s it. My health has improved a lot and so has my mood. Processing time is very much needed. I guess everyone needs processing time, but I feel that that’s even more necessary for people on the spectrum, since it usually takes a little while longer ‘till certain things are processed. If I don’t take this time once in a while, things keep piling up unprocessed, leading up to a lot of stress and physical problems. Just taking these two days allow me to be able to go on for a lot more days.

I’ve had people asking me if it isn’t just laziness and/or if I can’t go on for just a little while longer. To be honest? Yes I can. I can go on for a little while longer. It’s just that the longer I wait with this processing time, the longer I will need to recover. So in the end I’ll need more time for myself to recover. Instead, I rather take this time a little earlier, so I’ll be feeling fine sooner and I will be back in action in no time. This way, I’ll actually be more productive and not less productive.

In this time I’ve also done a lot of thinking about myself and about my future. I might not be able to plan everything out yet, as I still have a lot of things to start up, but even going through a lot of what-if scenarios and going through everything that needs to be done, clears up my mind. As I’m sure people are going to suggest this: Yes I am making use of lists.

Also, there’s something else that I have been thinking about. Someone once asked me that if there was a cure for Autism, if I would take it. I’ve been thinking back to this moment, because Aaron has blogged and spoken in an interview about the same question. I thought this would be nice blog material for me too.

So, what did I answer that person? I told him I wouldn’t take it. Yes, my autism is cause for sadness sometimes, but it is also cause for a lot of great things! Would I have been able to hyperfocus on studying at school if I didn’t have Asperger’s? Would I have been able to be so great at problem solving and, with that, helping at conventions? Would I still hold on to the same ethics? Would I still be wanting to fight for justice so hard?

I don’t believe that Autism is who I am. It’s definitely not! I’m me and I happen to have Asperger’s. But I do believe that my Asperger’s has influenced me a lot. It made me deal with certain things differently and it helped me in shaping my talents. I wouldn’t give that up for the world.

Saturday, 14 July 2012

The effects of loud music

At the moment I'm writing this on my nephew's computer, who was nice enough to provide his bedroom as an escape place for me. So... What happened?

Today my parents, sister and I had planned to go to my aunt's place, where they would hold their annual barbecue for the birthdays of the whole household. They always celebrate their birthdays like this. Every year I look forward to this, as they are very nice and kind family and I love the barbecue.

Also, every year they have party tents in their backyard with loud music coming from big musicboxes. Luckily, I can usually just go outside to get my food and then quickly get into the living room, where the music isn't too loud. After a while, my parents and brother and sister (depending on who tagged along) usually sit next to me to keep me company and soon a few other family members join the conversation. Usually family members with children, who can't take too much of the loud noise and the crowd in the backyard themselves.

This year we went to the party again. I, once again, looked forward to this. Only, when I entered the living room, something major has changed. It seemed they had connected two more music boxes to be set in the living room, so there would be music all around. A very nice thought... Except for me. This quickly took away the last hiding place from the music I had. I tried, for a few seconds, to be okay with it, but I had no chance. The beatings of the bass and the loudness of the ongoing music was felt deep into my stomach. I couldn't concentrate on much else anymore, except for the music and it shattered everything within me. I quickly broke down into tears and held tight to my mum. I told her I had no idea where to go or what to do.

My mum asked my aunt if at least the music inside could be turned down or off. My aunt explained that the boxes were fixed to the whole system, so if she would have to turn that down or off, the whole party would miss their music, not just inside. Seeing as they only have such a party once a year, this would be really sad.

Right at this point one of my nephews entered and, not seeing yet what was going on, happily greeted me and asked me how I was doing. Teary eyes I simply said 'not so well'. My mum explained him what was going on and he said he actually reads my blog once in a while and he understood. He immediatly led me up to his room and told me I could make use of his computer if I wanted. I happily thanked him for it.

Now I only go downstairs once in a while to greet some people and get myself some food and then go straight upstairs again. Usually I'm comfortable with having Asperger's and can even see how it can be a strength. Asperger's has helped me in many ways, like being very good with events and languages and things like that. Only, this is one of these times where I truly dislike having Asperger's. I wanted to join in on this party. I wanted to catch up with some family members and enjoy the barbecue. Now I'm just a girl alone in an empty room behind a computer with some food. I can do that at home too.

I'm not angry at my family members at all. I understand completely that eliminating the music altogether would make this a boring party in their eyes. I've known them all my life of course and I know that they just love to party like this. Only, this didn't work out for me at all and it saddens me a lot. If I knew this, I would've cooked up some nice food at home and just stayed home.
My mum just came upstairs and told me we would go home sooner than usual this time, so I wouldn't be lonely for too long. That's nice of her.

Friday, 13 July 2012

At full speed

My head is running at full speed and because it’s going that fast, I can’t concentrate on anything… If that makes sense.

Today started out fine, as I had another driving lesson which went better than expected. Before the driving lesson I felt terrible from being ill, but the driving lesson gave me something straight forward to focus on and, besides from some weird sounding coughing, I felt fine. My head seemed clear.

But after the driving lesson I started getting very uneasy. And it’s not just today, it’s been all week. There is just so much for which I have no idea what is going to happen. Too much uncertainties.

Tomorrow (okay, today if you watch the clock a bit too closely) I’ll be visiting my doctor to ask for a note so I can sign up at the Fatigue Centre. So I still need to get an intake there. I’m only just now finding out what I want from my guidance for my Asperger’s, so I haven’t contacted anyone for that yet. So I have no idea what to expect in these departments. I also don’t know what to expect in terms of a job in the future. And so on…

In short, I miss routine in my life and I have no idea what to expect. I live day by day… And that’s a scary way of living for me. Of course, I don’t want every bit of my life planned by the minute. That’s boring. But I need to know where I’m headed. Something that I keep returning to and that has me going in a certain direction. But right now I’m a sailboat without a rudder. I have no means of steering and am left to the currents to bring me somewhere. Maybe I’ll end up on a beautiful beach, but I can also smash against some cliffs.

As I’ve said before, the way I automatically deal with problems is simply to solve them. I can’t let go of a problem, until I’ve solved it. Now look at what my problem is. I can’t solve it. Well, not any time soon anyways. So my head keeps spinning round and round, trying to figure all this out, but there’s no answer, so it just keeps on going. This has me turning in my bed, robbing me of my sleep.

It’s seriously hard to explain to someone who never felt this themselves just how nerve wrecking this not-knowing is. Not having a direction. Not having an answer. Simply having to wait seems so easy in writing, but in real life it works completely different. Everything inside of me screams for a rudder. For something to steer my life in some sort of direction with. I need to know what direction I’m heading in.

But I can’t know. So in the meanwhile my heads just rushes on. Oh yea and I’m still feeling unwell, so that’s not helping either. Tossing… Turning… Tossing… Turning… I want to sleep… Tossing… Turning… Thinking… A lot of thinking…

Wednesday, 11 July 2012

Taking it easy

The last few days I’ve gotten a bit unwell. Not from Chronic Fatigue, but actually with a virus and everything. A nice change of pace I’d say. Still, I’d rather just be healthy of course. I’m coughing a lot, my temperature rises and drops all the time and I feel terribly tired and dizzy, even more than usually. I hope this passes soon, as I have plenty to do.

So with all this, I’ve decided to take it easy this week. This is also why I haven’t had much to write about. Being sick at home isn’t exactly the most exciting thing. Besides that, I could hardly concentrate on writing a blogpost. So Monday I called in sick for physical therapy and stayed home all day. Tuesday I only had a small meeting with the board of the weekly autism meeting, but that’s 5 minutes from my home and just sitting and talking for about an hour. They understood that I wasn’t all too productive.

Today I’m at home too. I’m starting to feel a bit better though, so I won’t call in sick for my driving lesson tomorrow. With feeling better, I’m also a lot less dizzy and I had a lot of sleep tonight/morning/bit of the afternoon… So the only thing that’s left is my temperature going up and down and I shouldn’t exercise too much yet, but I wasn’t planning on that anyway.

In the meanwhile I’m trying to learn for my driving lesson theory exam. This is hard! I can memorize all the factual things, like what the signs mean… But the pictures, especially the ones with who has to go first on the road and stuff, just don’t seem logical to me. Like, a person is to your right and a person is to your left, both going straight forward. I’d have to let the person on the right go first and the person on the left would have to wait for me. But in real life, if I let the person on the right pass, the person on the left might as well as they can just drive on the same road in the same time span right? See my confusion? I’m trying to teach myself that I will have to simply look at the rules with these things, instead of thinking about what would happen in real life… But it still doesn’t make sense to me, as I’m trying to learn for real life right?

I’m also trying to make contact with organisations that can help me with my recovery, so I can hopefully work again. (I’ve gotten half a year to work on my recovery) But this week, the only appointment I have for that, is with my doctor on Friday. But that’s fine, since that’s 2 minutes from here and being unwell isn’t exactly an excuse for not visiting your doctor, haha! It’s more of another good reason to actually go there.
But I’ve put all other appointments I could’ve made on hold for next week.

With other words, all I really did was a short meeting. Now I start to feel better and got a driving lesson, a meeting with the doctor and the weekly autism meeting. So just one appointment while feeling unwell. I think I did well with that. Now, time to eat my noodle soup and to wrap up this post.

Monday, 9 July 2012

The need for the right information

Last night I stumbled upon a website page which really frustrated me. It was a website page which was designed to help children with their presentations at school about autism. It was full of information on autism. The information was mostly fine. Most of it was very accurate and a good explanation. Only, the way they said certain things… Very damaging.

On this webpage, they had sentences like “The child won’t do or share things with you. It won’t come to you on its own. It doesn’t want any contact.”
I’d rather have the website say: “The child might have trouble to do or share things with you. It might have trouble to come to you on its own. The child might struggle to make contact or even be reluctant to.” Or something along those lines. In other words, I think the website is too definite in its words. It has more sentences like this. Like: “The child has no fantasy and won’t play any games where you have to pretend.”

These sentences are so definite, like that’s the end of it. They won’t/can’t do that, final. I most definitely want contact and I know a lot of other people with autism who have confessed to me that they’d very much like to make contact, but just don’t really know how. I most definitely do have fantasy! In fact, my favourite genre with books and movies is Fantasy, because I like to imagine all these worlds in my mind. Also, I notice that a lot of LARPers (Life Action Role Play) have autism. Also, cosplayers (comes from the words ‘costume’ and ‘play’, look it up on Wikipedia if you want to know more about it) have a lot of people with autism among them too.

Why would they have these kind of hobbies if they don’t have any fantasy? And why would a lot of people with autism be sad about the fact that they struggle with making contact, if they wouldn’t even want to make contact?

Maybe there are people with autism who have little to no fantasy. Maybe there are people with autism who don’t feel the need to make contact. But that most definitely doesn’t count for all of us. It’s not even that it doesn’t count for a few exceptions of us, but my experience tells me that it is a big number for who it doesn’t count.

Why does this annoy me this much? Surely this is just an annoying and misinformed website and I should just ignore it… Right? Not to me. Imagine that you’ve just heard that you have autism. Your psychologist just gave you your diagnosis, but you didn’t really get much information about it from him/her. (which I think all psychologists should actually give) You’re confused about your diagnosis and start to search for information about it. Now, imagine hearing a presentation with these words, or that you’re stumbling upon this website. You have this diagnosis and you read that with this diagnosis you don’t have fantasy, you don’t/can’t make any contact, you can’t play with other children (the website said this too).

Now, after hearing this, how would you feel about your diagnosis? There is a strong chance you wouldn’t hear much else from the presentation besides these words. You might feel your faith has been sealed. You’ll be alone.

Of course, this is false information. Like I said in my blogpost ‘after diagnosis’: you haven’t changed after your diagnosis, your diagnosis only explains what you were already feeling, so you can work on it. If you really don’t have the need to make contact, fine. But what if you do? Then don’t let these words stop you. You’re still you and you haven’t changed. This is why I get so frustrated when information on autism is this definite in its words. If you’ve met one person with autism, you’ve met one person with autism. Not every person with autism struggles with the exact same things and sometimes it’s also just something you struggle more with, not something you can’t.

Now another scenario. Imagine an employer who as a person with autism as an applicant for a job with his company. Imagine this employer having heard the information from this website. How will he/she feel about this person with autism? I’ve actually been told by an employer that I couldn’t work for his company, because with my Asperger’s I wouldn’t be able to keep track of things. He couldn’t be persuaded to think otherwise. What was I applying for? Making hamburgers and fries in a snackbar. This is what happens when an employer is misinformed.
Imagine the employer, who is sitting in front of this person with autism, telling the applicant he can’t work there, because he has read that people with autism have no fantasy and he needs the person he’s hiring to be innovative.

Whenever an employer asks me what new things I would bring to the office, I always say: “I have autism for starters. This provides me with a whole different way of thinking. Because of this I have a very different perspective on things, so I can shed a different light on everything that’s happening. This can bring new problems, but also new solutions to the table. That’s my strength.” It’s a strength, not a weakness.

Or what about the children in class who are listening to this presentation? They will hear that people with autism don’t want to make contact and that they can’t play with other children. Since they think that person can’t play with them, but also doesn’t even want to, they might think ‘well, I’ll just leave him/her alone then’. What if this person with autism was so desperately trying to connect with his/her class, but was just unable to? And now the rest of the class heard that he doesn’t even WANT to make contact? How will this information help him/her?

Sorry for the terribly long blogpost, but I just feel so strongly about this. I don’t believe this website set out to hurt people. In fact, they wanted to share information, to help people with autism. But they’re terribly misinformed and terribly definite in their words. The even worse thing is, that this isn’t the only website that’s like this. I’ve heard about people getting their information about their diagnosis from these kind of websites and ending up terribly depressed.

I want to fight for providing the right information. I feel it’s very necessary that the right information is out there, so that we can help people to really understand people with autism. If you truly understand something, you can truly start making a difference. From understanding comes hope. This is why I started this blog, but this also why I do all the other things that I do. Starting events about autism, helping out at existing events about autism, informing other people, etc. I still feel I can do more. I think I’m starting to understand how Aaron Likens feels and I’m starting to feel the same. So in some way, this frustration is a good frustration. It makes me want to do more. It fuels my fire in my passion. Let’s all get the right information out there!

Friday, 6 July 2012

And she lived happily ever after...

There is something that I’ve started noticing. I’ve written about it before, but after giving it some thought, I’m dedicating a blogpost about it. Have you ever gone through several stories in the media about people with different kind of handicaps, who told their story? It almost always ends with the person managing to make something of their life, finding a great job and being happy. They still struggle, but they feel way better now.

It seems that some people are expecting this from me too now. I have turned into some kind of role model for some people and they seem to hang on to how well I’m doing. Basicly: “If she can do it, then so can I!” Only, I can’t be doing well all the time. I don’t have that happy ending yet. I haven’t found that one job that suits me perfectly yet. In fact, I’m jobless and I don’t know if I’ll ever get well at all. I’m now on my way to find that out. I’m still at the beginning of all that, trying to get help at the Fatigue Centre and things like that. So no, I can’t tell you I’ll be fine. Maybe I will! I do have hope that I will! But I can’t promise anything.

I’ve been thinking about how this happened. I have actually had a conversation where I told my story to someone who has autism too and that person said ‘Yea okay, that’s all sad and stuff, but you’re okay now right? You’ve found your way right?’ and I responded with ‘Well, actually, no, I’m still trying to find my way, but it’s hard…’ and that person had a sad look and simply said ‘Oh…’ and turned around and walked away.
This is the more extreme example of similar things that happened. People seem to actually lose hope in themselves when I have trouble. Suddenly it turns into: “Well, if she can’t even make it, then how can I?”

People, please. Don’t forget that I’M NOT YOU. Every person is unique and I’m not superman either. Just that I’m not there yet, doesn’t mean that you can’t manage it. If you’re just looking for that happy ending story, then please follow Aaron Likens. He’s an even better writer than me and he has found his way after some terrible times. He’s now living his dream live. Find his blog here:
If you’re just interested in a life from a person with Asperger’s and Chronic Fatigue who is still trying to find her way and aren’t connecting your success with mine, than my blog is the right place for you.

Some people seem to think that I’m this emotionally super strong woman who can take anything, since she’s been through so much already. How about I tell you I’m emotionally quite unstable, BECAUSE I’ve been through so much already? This is the sole reason I got Chronically Fatigued. It all went just a bit too far. Again, I’m not saying I don’t have the hope that I’ll make it and I don’t think very badly of myself. But I’m definitely not a superhuman. I’m just a person who’s had a lot against her in life, still trying to find her way through that. If you expect me to have a happy ending story for you, you’ll be disappointed.

I think it’s because of our fondness of fairy tales. It always has this super nice super hero, who has a lot of struggles, but ends up with ‘and he/she/they lived happily ever after’. I think these stories work so well, because we’re all trying to find a story where someone has made it, despite all the things he/she went through. But I’m sorry, I can’t promise you this. I can’t even promise this to myself. It’s too much pressure for me to ask me to be your role model. I can’t. I’m just a person trying her best. We’ll just have to see.

Wednesday, 4 July 2012

A break

Yesterday my sister and I went to my best friend, since the three of us could use a break and we also had some stuff to discuss for the event we’re working on. So my sister and I went to Amsterdam. It’s been a while since I went with public transport with a purpose other than just driving around on a train. It was nice, since it’s a familiar route for me, but I still think Amsterdam is way too crowded. As most people probably do, I guess.

At my friend’s house we had a lot of fun. We worked on the event (finding a good place for it is a bit more difficult than we thought, but not impossible. We’ll find something) and we played some games. We had some good fun and scare while watching my friend play Amnesia. I don’t get scared easily, but I must say that further in the game, Amnesia gets pretty scary. We also played some other games and had some more laughs.

At the end of the day, my stomach ache played up again and I could only eat in tiny bits, which I disliked. Right before going to bed, my legs, arms, back and fingers started to hurt too. Just when I was about to actually go to bed, my back totally cramped up. God, I hate how I can’t just have a fun day, without having to end my story with something like that. Luckily my sister was there to give me a neck massage (turned out that my aches started there) and to give me a pain killer. This allowed for me to crawl into my bed. Still, we had so much fun at my friend’s house, and my head has cleared up a lot, that I still think it was worth it. We should definitely do this again someday!

Don’t ever underestimate the power of a fun day. It’s not a day wasted, it’s a day very much needed to be able to do the other things too.

Today I have the only day with nothing planned, so of course I had a lot of things to do. This always seem to happen. Empty days don’t exist, there’s always something that needs to be done. So I made a few phone calls. Only, these phone calls got my head full with information, and now I can’t focus on anything anymore, so I need a break again. So I’m going to take some time for myself now, before I start studying my theory for my driving exam. How can a person be jobless and still be so busy? Seriously… Now, time for that break.

Tuesday, 3 July 2012

An unexpected meeting, a cake and physical therapy

When I was young, I practically grew up with the boy next door. We had the best and craziest of times. Somewhere around the age of 10 he got diagnosed with autism and he went to special school. A year later I went to the International School and soon we were both too busy and we started drifting apart. This didn’t happen in a very sad way, it just happened as these things do. I did wonder for a while how he was doing, as we still always waved at each other and sent each other birthday cards, but didn’t have much more than short conversations, which didn’t really explain a lot other than that he was happy (which is good of course).

Today I went to the supermarket to get some ingredients so I could finish the small cake I was making for my physical therapist. On my way there I crossed paths with the mother of that neighbour boy. She was on her way to the supermarket too. I asked her about her son’s driving lessons and soon we got into a big conversation. I usually don’t start a long conversation when I have something to do like that, but since she’s not exactly a stranger, it was easy. We caught up with each other on what things her son did after we lost contact and I told her all about me.

It was great catching up again. It turned out that not only did he have autism, he has Asperger’s Syndrome just like me! She didn’t know about my diagnosis yet, so she was surprised, but she did agree it explained a lot about our past. I also told her about my Chronic Fatigue.

It’s weird how something like that can take all my attention. It has been something from years ago, but I still care a lot. I promised her I would take a flyer from the weekly autism meeting and drop it in her mailbox, in case her son would be interested. Who knows?

This conversation took an hour, leaving me, after getting home again, with less than half an hour to finish my cake. Luckily it’s just a small cake and I made it a simple one. I rushed and got it finished just in time! Exactly on the minute! I quickly changed into more comfortable clothes for physical therapy, then my mother (who drove me) and I went on our way.

I’m glad to be able to say that my physical therapist was very happy with the cake. She was so honestly surprised, that she gave me 2 kisses on my cheek. (people don’t get inspired by this please, I don’t like kisses on my cheek… Only it was special, since she never did this in the two years I know her, so I didn’t protest)

When physical therapy was done, she told me she would save the cake ‘till she had her break. There was just one more patient and then she’d have her break. We started making new appointments and she couldn’t control herself anymore and she dipped her finger in the whipped cream and stuck it in her mouth. The idea was that she would just have one bit, so she could hold out until her break. Only she loved the flavour of my whipped cream and said now she only wanted more! I’m not trying to brag her, I’m just saying that she couldn’t have fabricated that look on her face. I love it when something I baked turned out right and people are honestly enjoying it. It makes me very proud. By the way, if you’re ever to receive something baked by me: don’t lie to me please. If it isn’t any good, then I want to know. But also tell me what you don’t like about it. Bad feedback is also something I learn a lot from and it just helps me to get better!

Since today I still don’t have a lot of energy because of the Efteling, my physical therapist went easy on me (and the cake might have had something to do with that too…). So I didn’t have a too harsh exercise, which I liked. Now I’m sure I’ll be fine tomorrow, since tomorrow (well okay, today for people who look way too closely at the time. Yes, it’s passed 12 am…) I’ll be visiting my best friend together with my sister. It’s mainly for fun, since the three of us needed that very much, but it’s also to work on his event. Which is actually also fun. I can’t wait! Now off to bed.

Sunday, 1 July 2012

Ba/ed day

This will be a short blog post, as I haven't got much to say. I'm still very tired from yesterday and I'm happy that I didn't plan anything for today. My fatigue has made me bedbound for most of the day. At the moment I feel slightly better, so I'm downstairs on the couch again, but it's already past 10 pm.

My mother and I have named today a ba/ed day, as it's a bad day for me and I've spend the day in bed. I hope I feel better tomorrow, as I've got physical therapy and I promised myself I would, after 2 years of promising this, finally bring a small cake that I made myself for her. It's a simple and small cake, but still, I can't be bedbound if I want to make this AND go to physical therapy. Let's hope for the best.

To the Efteling again

Very quickly after the last time I went to the Efteling (a theme park), I got an e-mail from another organisation inviting me to come to the Efteling. Seeing as I didn’t get to see everything in the park the first time and that a lot of friends were coming, I decided to go again. I was allowed to take someone with me, so of course, I took my sister, since she didn’t get to see everything she wanted the last time either.

Today was the day. So we went to the Efteling. This time my sister and I would drive all by ourselves (well, she would drive and I would be the passenger, as I don’t have my driver’s license yet) and we decided we wouldn’t walk in a group at the theme park. The reason for this wasn’t to be anti-social. In fact, like I said, there were a lot of friends. The reason was that we actually have been going to this theme park so often, that we’ve created a few strict routines. We don’t have every single attraction planned out, but we do start and end with exactly the same attractions and we know which route we love to take the most. The last time we went to the Efteling we had to listen to what the others wanted as well of course (which is fine, every human being has their own needs, don’t worry) and there have also been a lot of big things going on in our lives lately. Things like losing jobs, father in the hospital for a few days, she losing her boyfriend, me losing my boyfriend… A lot of insecurities going around.

So routine was very much needed by the both of us. We did get a text message stating when we were to meet with the group (which also split up in little groups) to eat lunch and one more time to take a group picture. This was actually great, since we could still have our routine, but also have some quality time with our friends. It all worked out! So I don’t have a lot to say about this trip to the Efteling itself besides all of the above actually. It all just worked out greatly and we had a fun time.

At the end of the day, though, we were both very tired as we had both slept terribly the night before the Efteling. We decided to go home half an hour early, but that was fine as we had done everything we really wanted to do. On the way home we had to make a stop so my sister could rest… In a one hour drive… That’s how tired we were.

After having dinner, I decided to take a rest in bed with a good book. Only, after a few pages, my whole body just gave up. My fatigue didn’t just set in… It went in overdrive. It was a similar feeling as to how I felt after I got back from Leavesden Studios. My fatigue was indescribable. I’m guessing that’s how you must feel after running a marathon? I literally couldn’t keep my eyes open. I tried, but it was an effort on itself. I got very dizzy. My muscles started twitching from pure fatigue. I was wriggling in my bed from restlessness. This may sound odd, but I was actually feeling so bad from fatigue, that I couldn’t sleep. I know, it’s a contradiction in itself. It’s a terrible feeling. At some point my temperature started going up too.

I recognised the symptoms and knew that I had lost the battle against fatigue. I had nothing to do but to succumb to it, since if I wouldn’t, a fever would’ve taken me. I (God, I’m starting way too many sentences with ‘I’) layed my book next to my bed and let myself drift away. It was actually way too early, which would mean for me to wake up in the middle of the night, but I had no choice.

Afterwards I felt a lot better. My body wasn’t 100% yet, but I had slept enough and my temperature and muscles were back to normal. I took my laptop downstairs and… Well… Started writing this. So we’re at the present now. I’m hoping I won’t be sleeping way too late tonight. Luckily I made it a point not to plan anything the day after the Efteling, since I knew I would be too tired. So I can sleep in tomorrow.

So in conclusion: I had a great day! But as usual, I have to pay for it by feeling terrible. I’m seriously considering if I should use a wheelchair in things like theme parks in the future. All doctors keep saying I shouldn’t, as that would make me even less fit, as I would miss exercise. But I wonder if using one for just those days would really make such a difference and if I wouldn’t enjoy my day more if I didn’t have to go through something like this afterwards. Of course, I would just stand in line like anyone else, as there’s nothing wrong with my legs. I’m just considering it for the long walks in the theme park…
Don’t know yet, just pondering over this… If I were to decide this, I’d take it up with my doctor first.