Actual Life Update
Entry posted by Brickeens
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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.
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