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: http://lifeontheothersideofthewall.blogspot.nl/p/glossary-of-life-on-other-side-of-wall.html ). 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.

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 café, 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.)

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?

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…

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.

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.