Neighbors!

We have new neighbors, though they haven't moved in yet. They're doing the traditional Dutch new-house remodel first. It's a young couple moving in, maybe 5 or so years younger than me and Jan.

They put a new fence two weeks ago, under the direction of one of their father's, which is great since the old one was ready to collapse into a pile of soggy dust. Jan and his dad helped with taking down the old one and getting the support structure installed. It's nice having a real fence instead of a pre-fabricated thing from a hardware store that people usually put in.

Their other neighbors are less pleased at the prospect of a new fence. They refused to cooperate at all, so the new neighbors pulled off all the planks in their own side of the fence, and put in new posts right next to the old ones, then attached new planks. It must look extremely stupid from the other neighbor's side, having half the planks gone with a solid layer of planks right behind it. :-P

Jan chatted with the uncooperative neighbors a couple days ago when dropping off their package. They got back after the three day weekend to see the new fence looming there. Now they're complaining that the fence is too high - well, it is a bit, but they'd long ago built up part of the old fence to include an overhead trellis, which is actually higher along the fence line that the fence itself :-P They're probably just annoyed because their backyard with an extra shed is now even more claustrophobic with the previously very low part of the fence no longer being very low.

I stayed inside for most of the festivities, since I burn like crazy and it was a hot sunny day. Me and Jan's mom chatted a lot, which is getting easier as my Dutch improves. Jan thinks my Dutch is about as good as his Mom's English now :-) But while talking about the fence (a privacy fence with your neighbors is a "schutting", and "hek" is only used for pasture-type barrier fences), I had a light-bulb moment where I finally realized the difference between the "g" and "ch" sounds"

Both sounds are guttural, being produced in the throat. My 'g' sound has always been very good, but my ch sound not so much. Well, while discussing the "schutting" it clicked with me that the "ch" is produced lower in the throat, while the "g" is made near the top. They still sound exactly the same to me, but at least it'll be easier for other people to understand me :-P

Oh, and I STILL got sunburned, even though I didn't stay in the sun long. Bah!

Things are slowly progressing, healthwise. The supplements I mentioned in my last post have been helping a lot. I've gone from about 25% of normal functioning to 40% or so. No more constant pain, though I still have to be very careful with how much I do. I tried 15-20 minutes of weeding on Sunday and crashed. I hadn't fully recovered by work on Tuesday, and a doctor appointment to walk to the same day, so crashed yesterday too. Blech.

Well, getting sort-of-diagnosed by the internist I was sent back to my huisarts to coordinate my further care. Unfortunately, there is a clinic in the Netherlands that defines CFS as a psychological condition (hey, how else can they justify using the "treatment" they developed), and that was the information my huisarts got when she went looking for it. She started describing the CFS treatment at the Nijmegen CFS center, starting with pacing. I responded that I think I'm already doing a good job of balancing resting and activity within my current limits.

She then went on to describe CBT (cognitive behavioral therapy), though without saying the name. Well, I'd known what I have for over a month at that point, and knew that CBT is a treatment based upon a theory by some British psychologists that CFS is the result of faulty cognitive processes and inappropriate behavior. Basically they say that people with CFS are NOT physically ill, but may have been in the past. Due to that past illness CFS patients have developed the incorrect belief that exercise will make them ill. So to cure us, we just need to close our eyes and believe REALLY HARD that we aren't still sick.

...

Well, I informed her that my cognition and behavior are just fine, all things considered, and that CFS has many physical signs that can be observed by doctors in bloodwork and such. I asked if she'd heard of the CFS clinic in Lelystad, and she hadn't. I said I'd be more interested in going there, since they treat CFS as a physical disease. She asked me to look at the Nijmegen center's website, and offered to write me a referral to Lelystad or Nijmegen if I wanted it.

So I went back for that referral yesterday, to Lelystad, of course. After hearing about Nijmegen, I did a lot of research into it online, and it is indeed quite bad. They assert CFS has no physical component, yet their own research study say that their counseling only improved feelings of fatigue, with no resulting increase in physical activity. Yet they keep touting CBT as -the- treatment for CFS. At least in the Netherlands I already know that they must be smoking too much of :-P

I'd hoped my doc might do a little more reading in the CFS area, but at my appointment yesterday she still acted as though the problem is "tussen de oren" or "between the ears." The cute Dutch way of saying it's all in your head. She doesn't approve that I don't want to see the psychologists, but doesn't seem to care much either. I confess that I was somewhat tempted to try Nijmegen, just so I could argue with the therapists :-P Must be the lawyer in me.

The CBT bunch annoy me a lot, I must confess. Not only do they marginalize CFS and make proper diagnosis and treatment harder, they just don't make any bloody sense! There's literally thousands of studies documenting physical abnormalities in CFS, and they insist it's all psychological. And some idiots keep listening to them! Conspiracy theories abound on the CFS forums, but I think the simple explanation is that they identify CFS in a way that is central to their careers, and are better at getting the ears of policy-makers. It must sound nice to a politician to hear that millions of whatever currency can be saved if you label these people as malingerers that just need to exercise more and stop giving them any sort of benefits.

Sorry for the rant :-P I signed up with the Lelystad clinic online yesterday, and spent about three hours filling out a questionnaire regarding symptoms, medical history, and the SF-36. It took about three hours, but I had to copy and past to Google Translate. Then I got an automated response with a brochure, and another email this morning asking me to fill out the online journal for a baseline. Really just selecting 1-10 for various symptoms each day.

I did more research on them, finally wading into a Dutch CFS form to see what patient experiences were. It looks good over all, though they're not as thorough in testing as the Amsterdam clinic. I decided to try Lelystad first anyhow, since Amsterdam has a months' long waiting list. But at least it should result in a firm diagnosis, and referrals to deal with any problems generally resulting from CFS, such as digestive problems. Hopefully I can get a prescription for the supplements that have been working so well so far, and get costs reimbursed by my insurer.

So I'm still not doing much regarding inburgering, aside from 3 hours of volunteer work per week and learning a lot of medical Dutch words. I've been making steady progress on reading the Dutch translation of the first Dresden Files novel, and am understanding stuff pretty well again. Picking up words is SO much easier when I can process thoughts quickly!