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Brickeens

Premier Outstanding BZP Citizens
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Blog Entries posted by Brickeens

  1. Brickeens
    What's happening everyone? I may not feel or function like a person but I'm still alive and not out of the fight yet. I don't really have the energy to go into things in any great detail but I may be finally getting to the bottom of why the treatment for my terrible sleep breathing issues is failing. The good news is that I'm managing to improve things with my new knowledge and the bad news is that my breathing issues are orders of magnitude worse than anyone realised and my faith that said issues can be gotten under control and reliably kept that way is more than a little shaken. Can't believe I just lost another two years into a black hole of being able to do nothing, but here I am. Thank god my metabolism now works because I wouldn't have made it this far without it.
     
    Where is everyone else at?
  2. Brickeens
    So as some of you may remember I experienced a miracle health improvement last year, and it's somehow been almost an entire year since that happened now, which is kind of frightening. Anyway I never posted an update so I'm going to do a quick one here.
     
    The good: the working metabolism is here to stay, and has been literally life changing. Last year I really felt like I was hanging on by a thread, but the metabolism has given me physical stamina that wasn't there before, and is (or was) improving my mood, concentration and general mental alertness as well, and life was starting to look pretty different. I have also been really enjoying the superpower of being able to go for hours and hours without food, and also eating cheese while simultaneously getting thinner.
     
    The bad: since February this year, my sleep has been trying to murder me. I've had sleep issues for a really long time but they were being treated since 2015 and were semi-under control until the treatment inexplicably started failing this February and my problems came back with a vengeance and are currently doing their best to drag me back to the depths of ######.
     
    The situation: back in 2015 I was diagnosed with obstructive sleep apnea (not being able to breathe properly in your sleep which prevents you from getting deep sleep). I was put on CPAP treatment which is basically sleeping with a nose mask connected to a machine which delivers air pressure to you to keep you breathing properly. This worked really well for a year and a half and suddenly stopped working properly earlier this year. Long story short I have barely had a useful night's sleep in over five months at this point. I've seen my sleep specialist about it and they're trying different things but so far to no avail. Suffice to say that not getting deep sleep for over five months is very bad for your mental state and I'm unfortunately back to the desperate state of not having the mental stamina or attention span to be able to focus or do anything properly while simultaneously trying to keep my brain occupied at every moment so as to avoid completely out of control anxiety and doing my very best to not return to the depths of despair I was in last year.
     
    The most positive perspective I can put on things at the moment is that A) this can't last forever and B) I sure am glad I have the working metabolism on my side while this is happening, because if this happened before then I don't think I would make it. I'm honestly not sure how I lived before I started the CPAP treatment because holy moly I really need that thing to live.
     
    My sleep specialist is about to run out of options so it looks like I may have to go to hospital for another sleep study so they can attempt to figure out what on earth is going on. I can only hope the waiting list for another one isn't really long. In the meantime I'm being recommended trying some sort of medication to try and help me cope mentally but I'm not incredibly enthusiastic as the two former times I've been put on antidepressants/anti-anxiety medication they both had quite adverse effects and I had to be taken off them and then they also had bad withdrawal symptoms.
     
    How are you all doing?
  3. Brickeens
    So for as bad as 2016 has been for a lot of people, here I am with concrete health improvements, and I'm not dreading 2017 nearly as much as I've dreaded every other new year. Who knows, maybe I won't be dead inside in another year?? Happy new year to all.
  4. Brickeens
    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???
  5. Brickeens
    I realised a while ago that it's been something like three, four years since I've really been active on BZP. 2012 was the last year I was actually doing things here, and since then all I've done is visit the blogs every day out of habit, as well as make the odd post here. It feels so strange because BZP was my internet home for so long, and now I hardly know what happens here.
     
    It would be great to say that I've just moved on or have been doing things in life, but it hasn't really been like that at all. It's so strange to think about how long ago 2012 was, because so much time has passed and yet I've achieved virtually nothing and am in the same position I was all those years ago, except now I'm somehow 20 years old. The last however many years have disappeared in a hellish blur of really bad health. I've had all the time in the world to do things I used to love doing like building stuff or art, but I'm so sick and under such a devastating amount of fatigue and stress I've done hardly anything. I can't draw because my concentration is in pieces; pretty much anything that makes life meaningful I can't do (or if I can do, can't enjoy) because of how ill I am every single day. The one thing I've been able to cling onto is photography, but while I like it, I'm severely limited in what I can do because I'm rarely able to travel, and it's not so much a passion as a side-interest that's become the only thing I'm able to do a bit of.
     
    My daily routine consists of helping around the house (my mum is also quite badly chronically ill so I try to take as much of the housework as I can) which is cooking the dinner for the family, cleaning, washing up, and then trying to look after myself which is mostly keeping myself fed (I have to eat every two hours which isn't fun when you have an extremely restrictive diet and barely have the will to live) which takes every bit of strength and energy I have, and then the rest of the day is spent trying to blot out my consciousness as much as possible because between my body feeling like it's dying, unrefreshing sleep, crushing fatigue that's worsened by mental and physical activity and however many other symptoms, my mind is this uncontrollable torrent of anxiety that kind of makes me want to die constantly. The only way I'm able to cope is just jumping from thing to thing that distracts me and might keep me briefly occupied. I open so many things to read (like the blogs here) but half the time I'm either too tired to take in what I'm reading, too depressed to actually care, too foggy to focus, or some combination of the above.
     
    The part that really compounds it isn't so much the illness itself so much as how little support or understanding there is. It's not great having a condition with a 5% recovery rate, no quality treatment options, and one of the lowest functioning of any chronic illness, but when you combine that with the fact that you look relatively normal and are young, nobody wants to believe you're as sick as you say you are, and nobody gets it unless they've lived it themselves, it gets a lot worse. I'm extremely grateful for all the people who listen to and support me online, but off the internet I have next to nothing. The only person who gets it is my mum, and that's because she's also really sick, so she can't really help. The rest of my family often think I'm either not trying hard enough, lazy, or incompetent, and those are the people who live with me. It only gets worse beyond there, so despite how emotionally isolated I am, every time I try to form a tiny bit of a social life I withdraw because of the sheer lack of understanding.
     
    I don't know how much longer I can keep going. Or as I said last time, everything is horrible, turbo swag.
  6. Brickeens
    In an absolutely reckless fit of not being cripplingly exhausted and/or stressed, I started making something the other day and I kind of like where it's going. I also logged into my flickr account for the first time since like 2012 or something.
     

  7. Brickeens
    I've been feeling a bit nostalgic recently, and I now have a strong desire to play the MNOG II. I've never actually completed the game ever - I remember playing it when it was on the BIONICLE website in 2003 and getting virtually nowhere, then the game eventually getting broken, and then around 2011 I downloaded a fixed version of it from BZP and got quite far, except I wound up making some horrible mistake and getting trapped in Ta-Koro without some items necessary to finish the game, and I didn't have the heart to start over.
     
    tl;dr It may be 12 years overdue, but I will BEAT THIS THING.
     
    My only problem is that I'm unable to find a working download. I went to the BIONICLE Online Games Archive, but the two download links don't seem to work for me. Anyone have a working download handy?
  8. Brickeens
    So we've been planning this for a while, but next week, Zatth will be flying over here to stay for a few days. I can't believe this is actually happening?!? I haven't met any BZP buddies since Brickfair 2012, and this will also be the first time I've had a BZP friend over to stay in this little pocket of Ireland. Long story short I am super pumped, and am trying to figure out what the best way to spend the three days is. I think there are some pretty cool sheep near here?
  9. Brickeens
    I thought I'd make something for Sumiki's 20-pieces contest, so I threw this together a couple of days ago. It would probably be a lot better with arms and a torso that isn't a stick, but I got so carried away when I was making the legs that by the time I got to the torso I only had six pieces left.
     
    ANYWAY gasp shock horror, I made something! I'm not totally dead.
  10. Brickeens
    It's a big day over here, Ireland has legalised marriage equality by popular vote. There's still plenty to be done for LGBT equality here (particularly for transgender people) but it's a huge step in the right direction and I'm really happy. Here's to many more steps forward.
  11. Brickeens
    Is Pohatu a new colour, or is he burnt orange? If it's a new colour I'd be cool as long as we get more of it, but if it's burnt orange making a glorious return, I will throw money the at the screen.
  12. Brickeens
    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.
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