First, let me just apologize for not updating this as often as I know I should. I made this blog for future MNGIE patients, to be able to see how the symptoms affect the person. My goal is to update at least once a week, and it's been like two... So. Sorry 'bout that.
Another thing, I've been letting myself drown in things in order to try and forget about life. I don't enjoy my life right now because of how I feel in it. I'm trying to stay positive but that's so hard when I'm trying to stay alive at the same time. By "drowning" I mean letting myself get lost in my video games, internet, and books. John stays entertained by his friends and our roommates, so I just stay quiet and try to forget the fact that I'm dying.
It's really difficult.
I weigh 61 lbs. If you're wondering what 61 lbs looks like, try imagining one of those fucking anorexia advertisements. Literally skin and bones. My husband was rubbing my back the other day and he ended up at my lower back; I couldn't help but want to cry because his hand was resting on my pelvic bone. I don't think people really understand how much this is affecting me. I always thought I was skinny as hell, but once my bones start showing, it gets terrifying. The more weight I lose, the worse things get.
My symptoms are getting worse, too. Especially since I started my period two days ago (why does it make everything worse?!?). Go figure, just in time for my birthday. I was doing okay with vomiting, with a record 3 days without dealing with it, and then I jolted awake from nausea last night and spent a good 45 minutes throwing up whatever was in my stomach. I'm running out of patience.
Another nice kicker is that now I guess I'm not retaining any hydration by mouth. Meaning no matter how much I drink, I'm still borderline dehydrated. Doesn't that just take the cake? So I wake up in the mornings feeling like I'm already dead, except my heart is beating so hard and fast in my chest that it feels like it's in my stomach. This in turn makes my anxiety flare up, I'm panicking because I don't want to die at that moment, and I just sit there waiting for the ability to get up and get some water or something.
So I'll probably need to keep doing my fluids every other day. Can't do them every day because I'll blow up like a balloon.
Yesterday was ridiculous. Of course, it's that time of the month for me, and also pay day, so John and I try to go run errands. I'm on the brink of tears, just because, so anything would be able to set me off. I do okay up until we get to King Soopers, and I get in that stupid fucking power chair. For one thing, it's warped or something and the wheel keeps trying to turn to the right. Then it kept stopping even though I was pressing forward, and that frustrated John so at that point we were both agitated. Long story short, I ended up in embarrassing, ugly-sobbing, snotty tears, and John took me home and had to go get groceries himself.
I can't do anything anymore. I feel like I'm in everyone's way. It takes me forever to get anyfuckingwhere. I can barely stand up by myself. Can't walk by myself. Do you even know how hard it is to get out of the bath? I mean even with those handles and bars, I can't really lift myself out without using most if not all my energy. I end up just sitting on the toilet in a towel for 30 minutes waiting on the strength to put my goddamned clothes on.
I just want to be at that stage where I don't care anymore. Like an elderly person on their death bed, you know, all peaceful and "ready", right? I don't want to be bitter and angry and uncomfortable. But I'm not ready yet. I'm really not. I have so much I want to do, and I feel like I'm being rushed to do it all. I keep telling people I'm taking it a day at a time but honestly I think I'm trying to shove everything into one day so I don't miss it. And even then that ends up being me playing my 3ds all day.
I don't even want to type anymore.
