Tuesday, 14 August 2012

A day at the Fatigue Centre

Today I went to the Fatigue Centre and as promised, I’ll write about it. Last night was a sleepless one, as I was so worried that I couldn’t stop my mind from thinking about everything one could possibly think of. Seriously, my mind just went on about every single subject it could think of, very annoying. This left me with very little sleep in the end.

Because of this, my day obviously didn’t start out well. I had trouble getting myself to focus, so little things went wrong and my mum and I were discussing so many things, that I simply forgot to eat breakfast. On the way there I told my mum this and we decided to have something to eat at the hospital (the Fatigue Centre is in a hospital). This helped a lot.

When we got to the registration counter, I was told we had to go back to the entrance to get myself a pass with my information on it. I knew I needed this pass from the forms they sent me, but I didn’t know I needed to be at the entrance for that. I went back, had my pass made, then went back to the registration counter. There I was presented a lot of forms which I had to sign. So I had a lot of information to process already.

After ten minutes delay, we were asked to join the doctor. Upon sitting down, my eyes immediately fixated on the stuff laying on her desk, right in front of me. I tried to look up occasionally, but I just couldn’t look at her, not even at her forehead as I usually do with other people. She loaded some more information on me about food supplements and the treatments they offer and stuff like that. My mother soon noticed that I just couldn’t take it all in, so she took it upon her to accept the folders and listen extra carefully, so she could answer any questions about stuff I missed afterwards. (Thank you mum!)

It was soon clear that they wanted a lot of sudden changes in my life from me, which I just can’t live up to. We asked them if they can adapt to my Autism and they honestly said they couldn’t, since they don’t have the expertise for that. They weren’t rude about it, they were just very nice and honest about it and ready to help me think of the next step. We decided that I would take all the information that I can use for myself, but then in my own time and at my own pace. They gave me prescriptions for food supplements and showed me which kind of treatments and therapies I could try.

After this they did some tests, so that we can exclude some other possible reasons for my fatigue. I have did this once before, but this has been three years ago, so the results need to be renewed. They also did an extra test which I didn’t do before. I can’t remember the name for it, but they checked how much physical load my body can take by attaching some wires… I would have to ask my mum what they called this, or maybe someone knows and can put it in a comment. This test said that my body, in rest status, should theoretically be able to take on any physical load. This doesn’t add up to what we actually see happening, so this didn’t give any diagnosis.

After a lot of tests and talking (for about two hours, divided between two different specialists), I got a lot of food supplements and had to take a blood test. I didn’t expect this and I’m very scared of needles, so my stress level shot straight up. They also told me they can’t diagnose me with Chronic Fatigue Syndrom, as fatigue is also a symptom of Asperger’s Syndrome and you can only get the CFS diagnosis when there isn’t anything else that can explain the fatigue. I told them that I didn’t think this was normal fatigue, even with Asperger’s. They told me that doesn’t matter, that according to the rules they still can’t diagnose me with CFS.

Why does this matter this much to me? To show I can’t work the amount of hours the government wants me to work, I need that diagnosis. Now the only diagnosis I have is Asperger’s and based on that, they can’t say that I can’t work 20 hours a week. Well… I can’t even hold a 15 hours a week job… Am I destined to hop from job to job, failing every time, because I can’t keep to the government’s standards? I don’t hope so…

So, after all this I had to go to get the blood test. My stress levels were still high up and I told my mother that I was very scared. Since I had many blood tests before and she was always with me during them, this wasn’t news to her. The fact that this came unexpectedly didn’t help either. I knew that I needed a blood test, but at first I was to get one on another day. That it was to happen on this day, when I was already very worried about everything, and so sudden, didn’t help at all.

Moments before the blood test, I got really scared and my tension prevented the needle from hitting the right spot. Sometimes I really am my own worst enemy. The needle missing the right spot really hurt me A LOT. This also meant that it had to be redone. I was hurting, scared and in tears. They kindly asked if they could have my arm for another shot and I said: “No.” I wasn’t being stubborn, I was acting out of fright. I did realise that this didn’t help at all, so I asked if I could just take a little time out. It wasn’t that busy at the hospital, so they were okay with that. I could go to the cafeteria, have a little drink, and come back whenever I felt like it. They even understood it if I wanted to do it some other time.

That being said, my mother and I went to the cafeteria and got ourselves something to drink and a slice of cake. I took me about 45 minutes, but I managed to calm down. Then my mother asked me if we could go back and my stress level shot up again. I told her that I got a good scare there and that we could maybe better do it some other day, as just getting tense and missing the vein again, wouldn’t really work. Both her and the doctors understood and even agreed. My mother and I decided we would go to the local hospital in our own city this Wednesday to try it again.

So yea… The day at the Fatigue Centre did get me some good information and a new path to take, but emotionally it wasn’t a good day for me. I got very scared and my right arm (which was the one they used the needle on) kept hurting a lot for a few more hours after that, even after taking two pain killers. (This is from missing the vein. I AM very sensitive to pain, but I never kept hurting for hours on end from a blood test that went right before.)
This was a very long blog post, but it also was a long day. I hope you all managed to read up to here.


  1. Pff...
    Dat was me wel een dagje zeg!
    Lijkt me best stressvol en vermoeiend.
    Vast veel succes met het bloedprikken morgen.
    Ik heb ook vaak bloed moeten laten prikken.
    Idd niet leuk. Ik sloot me er helemaal voor af.
    Ik was fysiek aanwezig, maar mentaal haast niet.
    Kan soms best handig zijn ;)

    Ik snap trouwens wel dat ze de diagnose cvs niet zo snel stellen in combinatie met autisme.
    Aangezien autisme ook voor veel vermoeidheid kan zorgen.
    Zeker als je je leven niet goed op de rit hebt.
    Toen ik jou leeftijd had en behoorlijk ontregeld was... toen was ik meestal na een activiteit van 2 uurtjes oid alweer toe aan slapen.
    Dagjes uit enzovoorts kon ik toen absoluut niet.
    Daar had ik simpelweg de energie niet voor.
    Maargoed, wie ben ik.
    Al heb ik het ook wel van andere mensen gehoord.

    Daarom vind ik het ook wel vreemd dat ze wel vinden dat jij 20 uur moet kunnen werken.
    Sja.. misschien ooit wel. Als je wat ouder en relaxder bent. Alles wat meer op de rit hebt.
    Alleen heeft dat wel tijd nodig.
    Zou wel handig zijn als ze je die ook tijd geven ;)

    1. Het was inderdaad een behoorlijk zware dag en vandaag had ik ook nog een rijles en een Chill Aut vergadering. Momenteel heb ik dus spierpijn en gewrichtspijn. Morgen heb ik gelukkig alleen het bloedprikken, verder niks. Even weer rustmomentjes pakken, ik heb ze hard nodig.

      Bedankt voor het delen van je ervaringen. Is zeker iets om over na te denken voor mij.