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.


  1. Zijn ze daar bekend met autisme?
    Lijkt me wel beter als je ergens terecht kunt waar ze met autisme bekend zijn.

    1. Ik zou het bij God niet weten... Daarom wil ik graag eerst met iemand spreken voor ik al deze dingen al mee moet starten. Sinds wanneer kun je intakes niet zelf ook gebruiken om te kijken of je er wel wat mee wilt? :(

  2. Kun je je huisarts vragen of hij je wil helpen?

    1. Ik moet sowieso langs de huisarts om een bloedtest aan te vragen. Maar mijn huisarts snapte al nauwelijks wat ik bij dat vermoeidheidcentrum wilde doen, dus geen idee hoe ze zou kunnen helpen... Ze suggereerde alleen een ander centrum toen, dat schijnbaar hetzelfde doet, alleen dan kleiner. Geen idee hoe dat meer zou helpen. (note: ik mag mijn huisarts niet zo)

    2. Ikzelf vind het over het algemeen wel prettiger bij kleinere hulpverlenings instanties.
      Daar zijn ze meestal ook wat persoonlijker.
      Maargoed, dat is mijn ervaring.
      Hoeft natuurlijk niet overal zo te zijn.

      Je kan in elk geval wel informeren bij een paar van die vermoeidheidscentra.
      Misschien zit er een tussen waar je wel een goed gevoel bij hebt.