Thursday, March 10, 2011

Doule-Sick burger with a side of fries

This post doesn't have any specific direction, so I hope you can tolerate my nonsense. Here we go...

Since my last post I have been awesome enough to choke and aspirate on something. I don't know exactly what it was (other than food) because I choke on everything. Anyway, I'm pretty sure I had some kind of pneumonia starting up. I got the usual symptoms and as an added bonus: dysautonomia wanted in on the fun too. That meant, I spent 1.5 weeks walking the line between being able to kick it myself, and ending up in the hospital. I had been hooked up to my Joey-pump for the usual amount of time, but my body was in major over-response mode, and the usual 9hrs wasn't enough. I ended up needing to be hooked up for about 21 hours at a time. I hate the sound of anything mechanical,electronic or white noise when I'm sleeping. I can deal with anything else though. The Joey-pump was annoying to say the least. Never mind needing to get up and use the washroom, re-fill the fluids concoction every couple of hours and wake up to the occasional alarm. It was everything I wanted to avoid when I originally got the pump. yay. I tried to avoid it, but there was no way that was happening, because I'd wake up feeling like a complete zombie. Then, it would take me forever to get the energy to actually get myself hooked up and sorted out.

This was my first time being sick (with something that wasn't dysautonomia) since getting sick, so I had no idea what I was in for. I got pretty nervous in the beginning because I had been feeling good before and was getting what I though was enough fluids. After checking it out with my bendy friends on Facebook, I realized that this over-response stuff was normal. Getting even more sick will make dysautonomia go crazy...Strangely enough, a lot of us have been slammed lately. It all seems to happen at the same time, it's got be the moon but more likely the season change. I've been able to stay away from the ER and have avoided antibiotics. I had resisted it because just before that, I was on them for infected Jerome. I also kicked this aspiration/pneumonia thing last time without anything so I wanted to try it again. So far, so good...As much as this has sucked, I know that I can feel good again. I just have to listen to my body and ride this thing out. It's happening, just slowly...

Thankfully I've had this stuff, and some treatments to help me along (or do most of the work).
Dear: ER, I've avoided you again...buhahahaha!

I sometimes do stupid things when I'm brain-foggy... Things like this:

Can't a girl just have some tomato soup?! Epic Fail!!!

This week I also got some splints for my hands and wrists :)

I'm so excited at the thought of being able to put my hands in my pockets without subluxing them, or using my fingers without them doing nothing but bend.
I had to take a Sharpie marker to them, there's no way I can wear plain splints and braces. I put on the words that keep me going. It's derived from a Japanese proverb that says " Fall seven times, stand up eight."

Being sick again has given me a lot of time to process. I've needed to do it, and have been avoiding it like the plague. I haven't really thought a lot about my last year, maybe it's because everything has happened so fast, there hasn't been time to think. Now it's all hitting me like a ton of bricks and I'm trying to face it, but it's not fun. In the last year, I've lost my jobs from being sick and too bendable. I've ended up with AFO's, a wheel-chair, a feeding-tube, a pump and splints. I've spent the last 10 months mostly in bed and have had to face a lot of really scary things. Most of which, I don't ever talk about. I've lost friends who don't understand how bad EDS and dysautonomia can be, or who can't deal with me being this way. I get looks of pity or sadness, which drives me crazy. I don't think when I get looked at that way, the person doing it realizes how much that shit hurts, and it's the last thing someone in my shoes needs. None of that stuff does much good for building trust either.

I've pretty much lost everything that I loved and lived for. Nothing is simple anymore, I can't do anything without thinking about the consequences my body will dish out. I have to prepare for it all. My entire life has been consumed by this, and it's not a choice.

I do have the choice to make something of it though. That's where I'm trying to focus all of my energy. I've had to remove and protect myself from the things that bring me down, and really evaluate how I want to live. I have learned to accept that I will always have EDS and will always be sick. Nobody else is stuck in this body, or can fully understand the gravity of what it's like unless they're bendy, or I've trusted them enough to tell them. Even though I've lost pretty much everything, I'm happier now that I have ever been. I've learned what I need and don't need in life, and found my niche. I also found out for myself, where I fit within the grand scheme of things. This ride has been the furthest thing from easy, at times seemed impossible. The universe has always come through with truly incredible things. No matter how small or insignificant they may seem to everyone else, they are what keeps me going.

I am finally at peace, and I wouldn't trade it for the world.

"I like nonsense, it wakes up the brain-cells."

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