Quick recap, six months ago I got pretty much the best thing that's ever happened to me, which was a sort-of diagnosis from the metabolic unit in Dublin. What they found is that I have SOME FORM of fatty-acid metabolism disorder, which is good, but it's not really a diagnosis in itself, because there's a big range of the disorders and I could have any one of them. Because of that, treatment so far has been extremely limited.

In a nutshell though, the problem is this: I can't metabolise fat properly, which causes a couple of problems: Firstly, I'm only getting a fraction of the energy I should be (explains the fatigue problems I've had since childhood), so feeling exhausted all the time is a given. Secondly, all the fat I can't metabolise properly builds up in my organs, and also leaves a load of toxins in the blood (explains why I experienced so much nausea on a daily basis and also why my concentration deteriorated in recent years) so the two explain basically every problem I've ever had.

Treatment so far has consisted of taking carnitine, which helps take some of the toxic stuff out of my system, and eating a very low-fat diet to keep further damage to a minimum. The good part is, I no longer experience nausea on a daily basis and my concentration and general ability to think have picked up a bit (still a long way from normal but it's better than nothing). The bad part is, even though it's helped my head, the diet has had a really, really bad impact on my strength and energy, which were already bad to begin with. I'm really weak, I'm tireder than I was before, and I can barely get out of house most of the time. Exercise has been pretty difficult the last few years but I always forced myself to do it, but now it's nearly out of the question. If I walk anything more than a short distance I feel like I'm going to collapse, and I feel awful afterwards.

I'm really glad my head has improved a bit, but I'm so exhausted and physically even more incapable than I was before, and it's getting really hard to keep myself interested in doing anything. I'm either physically unable to do things I want to do, or just so tired I don't enjoy what little I can do.

(That was a really long quick recap sorry)

Here's the not so great news: I saw the head doctor of the metabolic unit yesterday, and they're at a dead end with my case. Whatever I have, it doesn't meet the criteria for any of the disorders they're familiar with, and they're much more confused now than they were six months ago. Not only that, they've run out of tests to do, and all they're doing now is re-running my blood and DNA tests in the hopes they'll show up something they didn't find last time. In other words, if they can't find something else, this is as good as it gets for me. I stay on my current treatment for the rest of my life so I don't get worse, but I don't get better either.

It's not a definite no, it's not really a definite anything, but it's not good and I don't know what do do with myself. I've got another long wait ahead, and it's agony not knowing whether I'm ever going to get better or whether I'm just hanging onto false hopes. I'm sorry I've been short with people recently, I'm sorry I'm grumpy and I don't respond to messages and do things I mean to do a lot of the time, but I'm at my wit's end and I don't know what to do. All that's kept me going the last few years is the hope that maybe someday I won't have to live like this, and now I'm back to being stuck in limbo with no guarantee of improvement.