Actual Good Things Happening

Entry posted by Brickeens September 7, 2016

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I posted this on tumblr a little over a week ago and have been meaning to put an update here. In just the last three weeks an actual, tangible, good, potentially-life changing thing has started happening and it took me a while to accept that it was happening. It all requires a bit of a lengthy recap of my medical history to make sense, so paragraphs ahead.

Some of you may remember the saga of the fatty-acid metabolism disorder diagnosis. In late 2013 I had a skin biopsy, and then early 2014 the results came back strongly suggesting that I had a fatty-acid metabolism disorder. I was over the moon at the time because it was an actual sort of tangible diagnosis and something that made sense. I’ve had for a really long time a serious problem with not being able to go more than two hours without eating, as well as being unable to eat everyday fatty foods without feeling really sick, as well as putting on weight ludicrously easily despite eating a relatively low-fat diet (also back in 2011 I was diagnosed with fatty liver disease, which was confusing at the time because there was no explanation as to why my liver would be so fatty).

So the diagnosis basically fit the bill perfectly, a fatty-acid metabolism disorder means that the body is unable to metabolise fat properly, so after two hours the body has burnt all the glucose from food and switches to getting energy from fat, but if you can’t metabolise the fat you’re screwed and your organs/muscles/bodily processes have nothing to keep everything going. Fat still gets moved to the liver to get broken down for energy, but because it can’t break it down, the liver gets a big build up of fat around it which impairs its function, as well as unmetabolised fat going on as weight, so it really explained a lot.

That was great at the time, something finally made sense, and from that point on (though I had kind of been doing this already) I made particular care to eat every two hours and reduced fat in my diet even further, as well as taking something called L-carnitine which did me some good because it helps carry fat out of the body. The big disappointment was then that the diagnosis went nowhere. There are loads of different types of fatty-acid metabolic disorders because different enzymes or whatnot can be broken or missing, so without any specifics known there are no actual treatment options. So I went back again and again for blood and DNA tests and endless lengthy medical interviews, but they came back each time saying that they couldn’t find anything, and suggested that maybe their initial diagnosis was wrong, which was really frustrating because it was the only thing that made sense.

So with things at a dead end there, the last forever has been this nightmare ###### (that's still filtered?) situation of not just having devastating fatigue/depression/anxiety/concentration problems/confusion/mental fogginess etc etc but on top of that having the EXTREMELY high-maintenence task of keeping my body going with having to eat every two hours on a wildly restrictive diet, nearly using all my energy every day just getting myself small, healthy meals non-stop, despite barely having the strength to keep going and being really really sick of eating, as well as the added injustice of struggling to hold my weight steady despite eating a really low-fat diet, and the only way to halt weight gain or lose weight being exercise, but having fatigue that’s worsened by exertion so there’s basically no winning.

ANYWAY so with things at a complete standstill (or maybe more like a circle) there was one piece of the puzzle that me and mum kept coming back to, and tried on multiple occasions to bring attention to but the doctors at the metabolic unit just ignored. Going back even further in my medical history, back when I was 7 years old and first became really really unwell and was diagnosed with CFS/ME, the doctor who diagnosed me managed to find something that drastically helped me (I think by that time I was around 10 years old) which I’ve been on my whole life since. For an inexplicable (at the time) reason a particular type of omega-3 oil really helped, and actually got me recovering for a while. I’ve been on it for so long I just take it for granted, but for as bad as things have been the last however many years, I’d actually be way, way, way worse if I wasn’t on the omega-3. I’d barely be able to walk or really move much, and feeling like what I’m pretty sure dying is like constantly. I can't really overstate what I'd be like without it, really not much better than dead.

So the omega-3 is some magic life giving elixir that drastically improves my quality of life some some reason or other, right?? So in light of the fatty-acid metabolism situation, me and mum noticed something:

https://en.wikipedia.org/wiki/Omega-3_fatty_acid

Notice anything in the name there? Omega-3 FATTY ACID sort of screams a painfully obvious connection, right? So we REPEATEDLY tried to bring this up with the doctors at the metabolic unit but they didn’t listen.

But putting the pieces together, it seems pretty certain that whatever’s broken in my metabolism, something in the omega-3 is replacing a part of it, so when I take it, it’s patching up a broken part of the chemical chain or whatever, which would explain why it’s like the difference between life and death for me. So logically following from that, if omega-3 seems to patch up a part of my metabolism but I’m still super unwell, then there might be something else that could fix whatever’s still not working/missing, right? So my mum being more competent than the entire metabolic unit did some reading to try and figure out what else would be worth trying. After a bit of research she got me omega-7 to try. On August 20th I started taking it daily without giving it a second thought, I didn’t really have a single hope or expectation on it, but it definitely couldn’t hurt to try.

On day 3 I noticed that I had accidentally gone significantly past the two-hour mark without eating, which basically never happens because I can always feel it coming, I can always tell when I’m around the two-hour mark because my brain starts feeling horrible in a way I can’t describe, like it’s screaming a bit and shutting down, but it hadn’t happened?? I thought it was just like a freak incident or maybe I got the time wrong or something, but then it happened multiple times again, I’d go past two hours without realising because I was still feeling okay. I genuinely couldn’t believe it was happening and was really afraid to get my hopes up or tell anyone in case I was wrong or imagining it or something, but then the next day it was still happening, so I decided to test it and went 5 whole hours without food (which would be horrific under normal circumstances) and felt just fine.

At the time of writing this on tumblr it was day 8, and by then I could go without food seemingly indefinitely without bringing on any sort of a crash. It's now day 18 and everything is still going strong. I no longer have a horrible crash if I go without food, and I no longer have to eat like clockwork constantly.

Just in the first week I had a couple of nights where I was WIDE AWAKE the entire night (I'm pretty sure my body was confused by its new abilities, I was just not sleepy at all) but for example, one night I slept two hours and then was awake from 12am to 9am. If this had happened under normal circumstances, in that time frame I would have had to eat at 12am, 2am, 4am, 6am, and 8am, but instead I only ate a little bit, just once, in that entire time.

So, yeah, I honestly can’t believe this is happening. It's taken a while to process the fact that this is real, this is happening, and that one of my worst torments has basically just evaoporated?

And this potentially changes everything?? I’m hesitant to say that my metabolic disorder explains everything under my ME/CFS diagnosis, so I’m not putting my hopes on this fixing everything, but at the very least it’s a huge crushing weight off my shoulders just not having to eat every two hours, and it also means that weight gain is no longer an issue, and also if it's going where I think it’s going, my liver should be able to process fat properly which hopefully means that given time, it can get rid of the buildup of fat around it, and seeing as fatty liver causes concentration and memory problems and all the rest, this could potentially improve all of that. It might even improve my energy levels? Again I’m not putting my hopes on this fixing everything because it might not be the whole picture, but at the very least there’s no way it won’t at least lessen the severity of other problems and make things easier to cope with.

It’s surreal being able to just do things without having to worry about what my next meal is. Also, finding out what an empty stomach feels like has been weird in a nice way.

So how about that?

E: Sorry, had to draft this right after publishing, what even is with the text editor here?? Trying to use my font colour in my links removed a whole paragraph???