Today, my facebook status consisted of "Dear: EDS, fuck you. that is all".
It was followed by a whole bunch of "likes" and similar comments from fellow bendy friends.
I've been really trying to focus on the positives, with a whole bunch of transitions happening at once. Some days are better than others, but it's been hard. There have been many moments this week where I have wanted to wave my white flag and just give up. I only have so much fight in me.
The biggest trigger for my current low is probably the ER visit earlier this week. Holy letdown Batman! Dysautonomia got the best of me, despite my efforts to stay away from the hospital. It was the usual over-response crap, minus the barfing (thank you Jerome). Although I was refluxing on water, it was gross. I had been pushing liquids, salt-water and supplements through J, and drinking lots of water, but to no avail. I had been really dizzy, with brain fog and completely exhausted when I had my follow-up with Awesome GP. He told me to get fluids if it got worse and it did, so I spent the afternoon in the ER again.
I'm not sure wether to laugh or cry over the fact that there are people on the ER team who know that I'm the girl with EDS, know my name, and know that I know my stuff, and let me call the shots. Ya know? It's come to a point where it's almost patient directed care. There's a bit of routine...I go into triage telling them I need fluids and Gravol, they do the standard evaluation, I hand them my past ER reports, info on EDS and dysautonomia and we get started. I can tell them where my good veins are, not to waste time doing any tests, and that I'll be fine after 1-2L of fluids and 50mg of Gravol. I change into my pj's, they put the line in and push the Gravol through. I lay down, throw on the mp3's, and take a nap. A couple hours later I'm feeling better, and am ready to get the hell out of there. I'm sent off with the usual "you know when you need to come back" and "good luck" every.single.time.
I'm usually asked a million questions, which I don't mind. They're wanting to learn, cool! This time, it upset me a bit. I think it's because I'm actually listening to what I say and it's not fun to hear when your conversation goes like this:
- So is there are there any treatments or anything they can do for the EDS?
- Nope, it's treated as things come up, although a stem-cell transplant would be nice.
- What about the dysautonomia?
- Yeah, nothing for that either, you can kind of treat the symptoms as they come up.
- Wow, that sucks. Good luck.
The positive, optimistic, idealist in me says "It's not all that bad, I could be needing to live on a ventilator, and not be able to move or talk" but there's been a huge part of me saying "Yep, it really sucks". I've exhausted pretty much every possible resource, and can't be anymore pro-active. When I ask about other options, and the answer is "I don't think there's anything else we can do". It's like being kicked while you're down.
One of the biggest reasons for me getting Jerome (gj-tube) was to avoid the ER. Yeah, that plan failed. Just like every other plan. I think I've got one last trick up my sleeve, but who am I kidding, it's EDS. You can plan all you want, come up with 6 different back-up plans and it will still find a way to win. With each failed attempt at trying to re-gain some control over your life, and this stupid disease, it doesn't leave much room for hope that things will eventually get better. That means that the constant appointments and visits to the hospital will continue. Perfect.
I know I am sick. I know that it's not ever going away, and I know that it will probably get harder. What I don't know is, what I'm going to do next, how the hell I'm going to manage, and what EDS will take from me next. I have very few things left and don't think I can deal with loosing anything else. Really, I'm a month away from being unemployed. Physically, I can't do my job anymore. I can't get a desk job, or anything that requires me to be upright for long periods of time. So for now, my options are going back to school and see what happens or, go on disability. I'm not ready for it, but I feel like that might be my only option soon. My worst nightmare is essentially coming true. I'm having to give up everything I've worked so hard for, including my independence, which is one of the most important things for me. I'd have to move back to my parents house in suburban hell with no job, no friends there, nothing to do and nothing to contribute. I will be relying on other people, yeah... not my thing. I've spent the last 10 years teaching people skills to be independent as possible, I try my damndest to practice what I preach and now I'm needing help with everything. Barf.
It drives me absolutely crazy when people ask me what's new, and I can't come up with anything but my most recent medical drama that has consumed my life, and what I can't do anymore. Then I get the usual "take care of yourself and stay out of the hospital" for a farewell. I'd love to stay out of the hospital. As one of my bendy friends said today "I'm sorry my life is nothing more than a giant freaking broken record. I can't help it and trust me, I'd change it in a second." She summed it up perfectly.
I don't know if it's because I've always had a game plan, but everyone asks what I'm going to do next. To be perfectly honest, I don't know what to do anymore. I'm tired of fighting all the time and constantly loosing. I'm just sick of this shit, all of it. I'm not going to ask "why" and try to come up with some philosophical reason for it. I'm also not going to pretend that everything is sunshine and lollipops. I might slap a smile on my face and pretend that living with this shit isn't a big deal, but it is. It's a big, complicated, painful mess that nobody can figure out,and there's a lot of us stuck in the same exact mess with the same crappy options. How uplifting.
So for now, I will continue doing what I can, eat ice cream, and play my didgieridoo. Maybe I'll somehow have an epiphany that will find me a way out of this mess.
My apologies for the negativity, but it was honest. Pretending all is well would be a big giant lie.
"Truth is like the sun. It may go in for a while, but it ain't goin' away"