Jump to content

Brickeens

Premier Outstanding BZP Citizens
 View Profile  See their activity

  • Posts

    10,093

  • Joined

  • Last visited

  • Days Won

    9

 Content Type 

Blog Entries posted by Brickeens

  3. Brickeens

    Anyone alive?

    By 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?
  5. Brickeens

    I'm building

    By 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.
     

  6. Brickeens

    Quick Life Update

    By 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?
  8. Brickeens

    MNOG II

    By 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?
  16. Brickeens
    I don't know how often I've mentioned this here, but if you follow me on tumblr you've probably heard me ranting about getting bad headaches every day. But hey hey hey, guess what? We finally know what causes them, and even better, how to fix them. It turns out the muscles down my neck and back have been badly screwed up (for a long time it seems) and have been restricting the blood supply to my head. So little wonder it's been so painful since forever.
     
    But even better, it's quite easily fixed. I've been given various exercises to stretch out the muscles and get the blood flowing properly. It's been about two weeks and the difference is huge. I have way less pain on a daily basis and life is generally easier to cope with. So how about that?
  18. 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.
  21. Brickeens
    So if any of you remember, I got a skin biopsy a few months back. I thought they would have been well done with the sample by now, but they're still testing it, and it's ACTUALLY SHOWING STUFF UP DO YOU KNOW HOW GOOD THIS IS!?!?!?!?!?!?!?!?!?!?!?!?!?!?!?!?!?!?!?!??!?!?!?!?!?!?!?!?
     
    It's complicated, but how I understand it so far: They've found my metabolism isn't breaking down fatty acids properly, which my doctor is excited about because apparently it explains so many things. Poor energy, difficulty exercising, muscular discomfort, stress on the liver, the need to eat often, they all make sense if I'm unable to properly break down fatty acids. I'm not getting an important source of energy and it also causes stress on other parts of the body. The whole thing is confusing and there's much more to it than I can do justice, but you get the idea.
     
    It's a huge step forward and I'm really, really happy that we finally have a clue what's going on. It's going to take more time for them to determine exactly where in the metabolic processes things stop working, but in the meantime, they're putting me on medication in the hopes that it will aid my metabolism. It's unlikely to be the cure, but it'll hopefully be a boost/help until they can pinpoint exactly where things aren't working.
     
    I've waited so many years for this. I'm so happy.
  23. Brickeens

    I made a tiny MOC

    By 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.
×
×
  • Create New...