A terrible hotel, a great convention and a horrible week

The tenth of February I went to a convention with my sister. I was looking forward to this convention, as I really needed something big to lift my spirits. To make sure we’d have plenty of energy at the convention, we booked a room at a youth hostel near the convention. This way, we didn’t have to get up very early and drive all the way there. Because we took this precaution, and the convention was only one day, I was sure I would recover from this convention quickly.

I was so wrong… The day before the convention heavy snow was predicted. Because of this we suddenly decided to drive to the youth hostel sooner than we planned. This meant that after getting out of bed, we immediately had to pack our bags and head over to the youth hostel, so we’d be there before the snow would fall.

We weren’t on time and snow did fall during our drive to the youth hostel, so the drive there took quite some energy from my sister and I. After we arrived in the right city, it all went downhill. The parking garage had a very narrow entrance, which we could only barely enter. After that scary drive into the parking garage, we went to the youth hostel. It was hard to find the entrance, but we managed to find it.

I’m not sure if this was a good thing though, as the youth hostel was terrible. It had poor maintenance, a shower where you had to press a button every 4 seconds (Yes, we counted that!) to keep it running, a scary elevator with loose walls, two employees who cared more about playing foosball than their job… and worst of all: Beds, so terrible, that my sister only slept for four hours and I didn’t sleep AT ALL.

After a whole night of staring at the walls, we found out that at least breakfast was okay at the youth hostel. After breakfast, we went to the convention. This particular convention actually did better than last year and I had quite some fun at the convention. I loved seeing all my friends there and doing what I do best: helping out at a convention. I kept myself awake by adding some sugar to my system.

That last thing, staying awake with sugar, is usually something I don’t advise to anyone and I still don’t advise it to anyone. It’s a bad idea to do at a convention, as the adrenaline rush from all the fun, combined with the sugar, makes you burn away your energy at a faster rate than you’re supposed to. This is the first time I used this method at a convention and I regret it already. The week after the convention I was beyond exhausted. I still went to the few appointments (I knew I’d at least be A BIT tired the week after…) I had, but I actually didn’t even have the energy for that. Every day took a lot from me and I should’ve cancelled my appointments.

At the end of the week my body got too weak and I caught a virus. Saturday night (… right? I kind of lost track of time last weekend) I wanted to go to bed and right at that moment my body decided it was enough. I got very dizzy, felt horrible, my temperature rose a bit and I lost the little energy that I had still left. I couldn’t even get myself up anymore. After an hour of being taken care of by my sister and mother, they both supported me all the way upstairs to my bed.

Going through a convention on sugar for a day, after not having slept the night before, was a terrible idea. Not cancelling my appointments the week after was the worst idea ever. If you ever catch me lecturing someone on staying awake on sugar (energy drinks count too with this rule!) at a convention: This is why. I know the effects, because I feel the effects ten times as hard. I was stupid not to listen to my own advice.

I was stubborn. I didn’t like the idea that one night of lack of sleep would rob me of a fun convention and a whole week of appointments, where other people usually just need one or two extra days of sleep and they’re fine. I guess I was rebelling against my Chronic Fatigue, which is of course just stupid, as my Chronic Fatigue won’t suddenly go away by ignoring it.

To end with some happy news: I’m starting to feel better again and my plants are growing really well! I’m proud that I managed to water my plants, even through all the above experiences.

The plants are leaning down because they were leaning towards the sun (I turned them around before making the picture), they're not leaning down because they're dying.

The answer. Now what?

Last Monday I had an appointment at the UWV. That is the organization that gives me my WaJong, which roughly translates to government profit (if I’m wrong, please correct me). I’ve been trying to hold a job for two years now, with the help of a jobcoach. The UWV told me I’ve got to have a job for at least 20 hours a week.

Well I’ve tried as hard as I could! But in the end I didn’t even manage 15 hours a week, which is already way less than they asked of me. The biggest problem is that I keep getting ill all the time. You can read the story of how I got fired from my last job here: Fired

After two years of trying to hold a steady job and failing, it was clear to me and everyone around me that this was leading nowhere. My jobcoach and the UWV gave me half a year to get my health to be a bit better. I already told them that half a year probably wasn’t going to be enough. I was right. I made some great steps, but I’m not far enough yet. I still get ill frequently.

This was what the appointment at the UWV was about. The half a year is over and we spoke about what I had done and how we’ll go on from here. I was very nervous, because I had no idea what kind of impression I would make. I can look very healthy to an untrained eye on an average day. I was scared that they would be happy with my progress and throw me back in the 20 hour a week routine, which would damage my health instead of help me.

Luckily my fear didn’t come true. The person I had an appointment with really understood me and knew that I’d be better off with a bit more time to work on myself, than to have to try and hold a steady job again when I’m not ready, damaging me even more.

So she told me she was very happy with everything that I was already doing to keep my health going and even improve it and she was also happy to hear that I was doing volunteering work in the times that I do feel well enough so I would have something to do besides the appointments for my health.

She was proud of me and wanted me to continue down this path.

I’m so happy and relieved! Of course I want a job, but I really need more time to work on myself before I can get back in the field. I got an appointment with my jobcoach at the end of the month and we’re going to lay down some new plans to help me further my quest for better physical and mental health.

I should be really happy right? Well, I AM happy about all this, but still I feel a bit uneasy. After some soul searching I realized I have two reasons for feeling this way. The first is simply not knowing what is ahead of me. Most people have some sort of plan for their life, even if it’s just ‘hoping to keep doing my job for a while longer’. Nobody knows if their plan goes as planned, but at least they have a plan. (What a sentence!) I don’t really have a plan for longer than another half a year. I just want better health, that’s all I know. If you’re asking me what I think I’ll be doing a year from now, I’d have to tell you that I have absolutely no idea. And if there’s one thing that unsettles me, it’s not knowing. (blogpost about this: Not knowing )

The other part of it is something that is hard for me to admit, but something that a lot of people have pointed out to me already: I have trouble accepting the situation. When I was young I’ve been terribly bullied for about 13 years straight. In this period people always told me: “Don’t worry, you’ve got great grades, a great working attitude and you know what you’re talking about. Someday you’ll be a manager or something. In the meanwhile they’ll be flipping burgers at McDonalds. Don’t worry, when you’re older, you’ll have your time. Their time is now and it’s over soon.”

It’s a very cliché speech, but it did help me get through the years. My time was still coming and I was going to live to see the day! And well… Right now I’m receiving government profit and I can’t even hold a steady job. I’m very proud of everything I do at the volunteering jobs though! But when someone asks me what I do in daily life, I answer with my volunteering jobs. Then I usually get this answer: “No, I mean, what kind of job do you have? Or to what school are you going?” Then I have to tell them I don’t have a job or a school. This is usually followed by “Why not?” I have no trouble telling about this, so I tell them. Then this person usually either feels really sorry for me, or tells me “Oh… You’re one of THOSE…” I’m not saying this happens every time. There are people who simply understand me too. But they seem to be outnumbered.

People who look at me with pity mean well. I do not resent them in any way. But all that look does, is confirm how sad it is that I can’t hold a job. The answer of “Oh… You’re one of THOSE…” is obvious why that hurts. And if it’s not: They mean one of those people who are lazy asses that live of the government.

That just hurts! Because the very reason I got Chronically Fatigued is because I worked way too hard in my life. There’s nothing lazy about me! I WISH I could work!

So yea… Somewhere deep inside I know it’s okay to be where I am right now. I need the government profit and I need to work on myself. In the meanwhile I’m doing great with putting up events and I’m doing a lot of charity work, especially for Autism. I should be proud of all this and I really am! But when I get the kind of conversations I mentioned above I just feel my confidence sliding and accepting where I am right now gets harder…

I shouldn’t be this affected by other people. I mean, man! I lived through 13 years of bullying, I should be able to live with simple comments like these right?! But I have to admit it still gets to me. This was supposed to be my time to shine. Where is my time?

Plants!

At first, my apologies for being late with a new blogpost again. It’s very hard to me to think of things from my daily life to talk about. There’s plenty to talk about, but with some things I just don’t know how to make a proper blogpost about it and with other things it’s about conflicts I have with people I know. I don’t like to blog about that, as it can hurt people’s feelings. That’s not what my blog is for. But I got a new topic to talk about!

If you ever visit me at my house, there’s one thing I’ll always tell you right away. I’ll first offer you something to drink and then tell you that if you ever need another drink, just tell me. You’re also allowed to get something to drink yourself.

There’s a good reason I say this. Is it because I’m actually that rude that I can’t even take a few minutes out to get you something to drink? Or that I’m that rude that I don’t want to bother to offer something to drink myself?

No, that’s not it. I’m actually trying to be a nice host here. I have a lot of trouble thinking about little needs from other people. Like thirst, for example. It’s not that I don’t care. When I see that someone has some sort of negative emotion, be it sad or angry or lonely or whatever, I’ll ask what it wrong and try to help. It’s simply that subtle emotions are lost on me, I don’t see them. I can’t see when you’re thirsty and subtle hints hardly ever work on me. Also, when I get lost in all the fun we’re having, thinking about something small, like thirst, just doesn’t happen. Again, it’s not that I don’t care. I simply have a hard time thinking about small needs, until the topic comes up.

For example, you’ll find that when I get thirsty myself, I’ll usually offer my guest something to drink too. This is because I’m suddenly reminded of the need of something to drink and will remember that I haven’t offered something in a long while.

So I don’t make you ask for, or get a drink yourself because I don’t care, but because I know I easily forget about such a thing and I don’t want you to get thirsty just because it’s considered polite to wait until a drink is being offered. I’d feel very bad about that.

I have trouble with forgetting about small needs of others like that all the time. The same goes for plants. When I was young my parents got me a small cactus to take care of. They figured ‘surely she won’t let a cactus die’. Erm… Yes I did. I took great care of it at first, but after a while I forgot about the cactus, because I got distracted by other things in life. The cactus was slightly out of sight, so I was never reminded by it either. Three years later I suddenly saw my cactus standing there. Or rather, I saw it slightly bended over and turning grey… It was dying. I actually let a cactus die, simply because I wasn’t reminded of it.

A lot of people who hear this story, usually immediately wonder what I’d do with a pet. Well I can tell you that I’m scared of most animals and don’t ever want a pet, so that’s easily solved. We did have dwarf hamsters when I was little, but they were in a cage and they weren’t mine. My brother and sister owned them, so it was their job to take care of them.

I was never really bothered by all this, as I never had animals or plants to take care of after the cactus. I do feel sad that I sometimes forget about the small needs of others too. I’m sorry about this.

But about a year ago I suddenly realised that I’m growing up and will eventually be living on my own. When I live on my own, I will probably want some plants around as they’re good for my health and they’re fun to have around. But what good is a plant, if I can’t take care of them? I also saw that I sometimes hurt the feelings of my (by now: ex-)boyfriend by forgetting about his small needs. This hurt me deeply. He understood that I was seriously trying, but still… I want to be there for my boyfriend, not just for big issues, but always. I’m single now, but I’m sure I’ll find a boyfriend again and then I want to be there for him. So, time to work on this.

I wanted to teach myself this by getting a plant, because if I screw up with a plant, it isn’t that big an issue. But I wanted a herb, so that I’d be rewarded with a nice meal immediately if I take proper care of the plant. With the opening of the Weekly Autism Meeting one of the volunteers came up with an activity where you could grow garden cress (Dutch: tuinkers) in a very creative way. This was perfect timing!

It was hard, as I had to figure out how to take care of garden cress (how much water do I give, what temperature does it need, how frequently do I water it, etc), but I eventually managed to grow some! I rewarded myself with a nice sandwich with cheese and garden cress. Loved it!

After that I tried to grow some more herbs. I failed miserably. Luckily a friend of a regular visitor of the Weekly Autism Meeting was an expert at plants and he told me that the seller of the herbs simply had me put the wrong type of herbs next to each other and that it was doomed to fail. So it wasn’t my fault after all! I got excited again and wanted to try again. To keep my motivation I would play it safe and use garden cress one more time.

But then my life got a little harder, as I started working somewhere which cost me a lot of my health and got fired again because I was ill too much. (If you want to know more about me getting fired, check out this blogpost: Fired )

This took so much out of me, that I laid the idea of growing some more herbs aside. After a while I forgot where I had put the seeds, so I had to go and buy some new ones. I found my old ones again and now I have a whole bunch. Then I kept forgetting about it… See? Forgetting about little things again. Recently I started thinking about it again, but other things demanded my attention.

Now I got sick of myself and told myself to get to it. Today I have a day where nothing is planned, so I emptied out my old plant pots, got in new Earth soil, put in the seeds and put water on it. Now I simply need to remember to water it each week… Fingers crossed!