Don't get even, get mad.

'I'm as mad as hell and I'm not gunna take it anymore.' That's what the film Newsfront encouraged us to do in the 70's. i have been doing some research on PKU on the net and listening (or at least reading) about the experiences of others with PKU and have found that there are a host of 'symptoms' and side effects of high phenylalanine that I have that I had always fobbed off as thinks peculiar to me. It would seem that some of them are fairly common to PKU. Headaches (hello!) anxiety, depression, poor short term memory even a degree of pain from nerve endings. The depression comes them the fact that with PKU the body can't produce Tyrosine, which is needed to produce dopamine in the brain. The nerve pain probably fromt he fact that high blood phenylalanine levels effect the central nervous system. It's been known for some time that I suffer from depression and anxiety. I was never told that this was normal given the circumstances. I have been left to believe that these things were just part of me and not necessarily part of having PKU. Why wasn't Itold? At the PKU clinic they chastise you if you don't turn up regularly, but they don't really give you much incentive to. I start to wonder why I bother at all, given the total lack of input from them. On a lighter note, I had some blood tests done the other week and it turns out my blood sugar is good at 5, my vitamin B and D also good and my cholesterol good. So there you go. All this pent up pissed-offness has served to motivate me to be better with my diet - ironic really. Let's just hope that my lack of appetite hasn't pushed my levels up even higher.