Not knowing

Lately I’ve been going through life on automatic mode and I seem to be on edge, making me respond more harshly to some things. This is because I have been in an uncertain situation for way too long. If there’s one thing I need, it’s knowing what I can expect. I don’t mean that every little change gets me in panic mode. In fact, I wouldn’t be able to put up events if that was the case. But I mean the big things that would bother anyone, bothers me a lot more.

It’s not just that I don’t know what to expect in life lately. This seems to be the story of my life the last couple of years. When I was in my 3^rd year of secondary school I fully collapsed for the first time and had to go to a psychologist and had several tests done. I couldn’t complete this school year, because I didn’t have enough energy for school. (This is when my Chronic Fatigue was at its worst. I couldn’t do more than 3 classes of 45 minutes each day and even then I had a lot of sick days) I was very scared in this year, not just because of all the bullying, but because I had no idea what was going on with me and I didn’t know what would happen to my education.

In my last year of secondary school I collapsed for one and a half semester. This made me behind on my schoolwork so much, that it wasn’t until two weeks before the exams, that I knew for certain that I was even allowed to enter my exams. A little explanation: There are things like essays and certain tests and things like that, that need to be done before you’re even allowed to enter the exams.

If I couldn’t enter the exams, I would have to go to adult education and I was told that I wouldn’t be able to get the guidance that I needed when in adult education. This scared me a lot and, until two weeks before my exams, I had no idea what to expect.

Also, I had a lot of medical and psychological tests in this year. This took a long time, as they couldn’t find anything wrong with my body that would explain my medical problems. So this was also a very uncertain situation. Eventually I got the diagnosis “Asperger Syndrome”, which did help, but it didn’t solve my Chronic Fatigue completely.

After this I went to bakery school to become a pastry baker. Because I had so many sick days (school hours are just too much for me) and even felt bad at school and at my internship a lot, I couldn’t become a pastry baker, which is a level two education. I graduated as an assistant baker, which is a level one education, which is just one year and I didn’t need an internship for that. But knowing that I was sick so much that I couldn’t even hold an internship, I knew working as an assistant baker was probably out of the question too. So this whole year I didn’t know what to expect and even when I finally graduated, I still didn’t know what to expect in life.

My mentor sent me to a job counsellor. After all the information was put into the system, the computer came up with… Nothing. Absolutely nothing. We had to get some information out before it came up with something. It was DTP. I tried to get into the school for that, but the school was being SO difficult, that I didn’t know what it was really about, until introduction day. I actually disliked what it was about so much, that my whole body even responded with going from feeling absolutely fine, to getting ill. The moment I decided against the school, I got better again.

After this I did a lot of thinking and got counselling and things like that, and decided to try and get government profit, because I was out of options. (No, I didn’t write down everything we tried in this blogpost. It would’ve been way too long. But trust me, I had no idea what else to do) This turned out to be very hard, because I didn’t have the diagnosis ‘Chronic Fatigue Syndrome’. It turns out that to get that diagnosis, you can’t have anything else that can make you tired. Asperger Syndrome can make you tired. It doesn’t explain just how tired I am and most of my other symptoms, but just because of my diagnosis of Asperger Syndrome, I can’t get the diagnosis of Chronic Fatigue Syndrome.

With just my Asperger’s, I would theoretically be able to work. It’s just the combination of my Asperger’s and my Chronic Fatigue that makes it so hard for me. But seeing they can’t use my Chronic Fatigue, they had troubles giving me government profit. In the end they could give me government profit on account of my ‘load capacity’, meaning the amount that my body can take. But they still said I had to work for 20 hours a week and I just needed to be happy to have government profit at all. So I had to wait for this verdict for a long time, which got me very scared, because I seriously didn’t know what I would do without government profit.

The people from the government profit sent me to a jobcoach, who had the task of getting me a job within 20 weeks. I wasn’t too sure that would happen, due to my own experiences, but they said 20 weeks is a long time. Well, I don’t want to say ‘I told you so’, but… I told you so. They couldn’t find me anything, so they gave me an internship at their own office. After 2 months there, they still didn’t have anything. (Oh, by the way, if this seems like they were searching and I was just relaxing… That’s not true, I was searching very hard and I was applying for jobs too)

A job opening for light administrative work opened up at their office. I applied and was hired for half a year. They told me they weren’t allowed to hire me for more than half a year, so in this half a year I kept searching for another job. I didn’t get hired anywhere (more uncertain times!), so after these 6 months, they went to the company’s headquarters and managed to get me a job there. At this job they weren’t as forgiving for me having so many sick days, and I didn’t even get through the trial period.

Five (!!) months later I managed to get a job as an assistant baker. Well, if you’ve followed my blog you’ll know how that worked out. If you didn’t, I got fired for not being fast enough and having too many sick days. Here’s the link to the blogpost about this: http://thedailydaysofanasperger.blogspot.nl/2012/06/fired.html

After this I was told I should work on my health. The people from the government profit granted me half a year for this. The deadline ends this December. So, this is where I’m at right now… I’m working hard on my health. I have lots of appointments with doctors and I’ll be applying to get back at my old psychologist again. Out of all these appointments, at the moment the food supplements and the lung tests seem to have the most hope in them. But if those things don’t give anything helpful, then… I don’t know. I have absolutely no idea. I don’t even dare to plan more than one month ahead, that’s how uncertain things are.

Those dreams about becoming a pastry baker, or an actress, or to do things in events? I can’t even dream them anymore… (I’m actually tearing up as I write this) I just don’t dare to let myself think of things like that, as it just hurts me to know that I might never be able to work. I can maybe do things as a volunteer, that’s a comforting thought, but still… I have been dreading to write about this in my blog, as I don’t want anyone to get discouraged. These problems are mostly due to my Chronic Fatigue, not due to my Asperger’s. If you have some form of Autism, don’t get discouraged because of me. There are plenty of options with Autism. Also, if you’re Chronically Fatigued: Chronic Fatigue comes in different severities and you’ll also have different opportunities in life. Don’t give up because of my story please.

As for me… I’m not giving up either, I’m still fighting, but I must say I’m at a bad place emotionally now. I have no idea what to expect in life and to maybe have to give up my dreams… I can’t even make new dreams... It’s tearing me apart.