Waving the white flag

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.
- Oh.
- 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"
(Elvis)

Thoughts on wheels

After reality had pretty much smacked me in the face, I had to start making things happen in order to make life work for me. I can't really say I'm someone who cares about quantity, I'm all about quality. I'm sure working in the field that I do, has given me a viewpoint that not many people get to see. I play the therapist role at work, but I also understand what it's like to live in a body that doesn't work. This gives me a rather unique perspective, which I am thankful for. It allows me to turn on my therapist brain, look at my situation and find ways to increase my independence and come up with multiple back-up plans to make it work for me. It also has given me resources that I could not otherwise access without a lot of research and work. Those resources are my friends. We work together, and we play together.This means they see the girl who can kick some serious ass at work, and the girl who spends a lot of time in bed and not being able to participate in life. In doing so, they have been able to turn on their therapist brains and give me input that otherwise would not have been possible with any of my doctors.

I'm now in the process of getting some new wheels. It's not the kind that we all wish for, it's a wheel chair. I'm not sure how I feel about the whole thing yet. I'm looking forward to being able to participate in life more, and have something to make life easier with injuries and bad pain days. But really, who looks forward to getting a wheel-chair? I don't think many of us as children or even adults had visions of ourselves in a wheel-chair. Even last year, it wasn't a thought that even crossed my mind. I was at the climbing gym, paddling and being insanely active. I'm going to have to learn how to live with more stares, ignorance and places that aren't accessible. It will require more planning, patience and a positive attitude. What makes me more anxious than anything, are the inevitable times when I'll run into someone I haven't seen for a while. Having to explain EDS and what it does to me gets tiring. Especially when I get told things like "You were fine before, why is this happening now?" No, I wasn't fine before. 14 years ago I was starting my little journey into the world of EDS with many, many bumps along the road. I find myself having a lot less patience for people who think they're doing me a favour by giving me their pity, claims to understand what EDS is like because they sometimes have a sore knee, or unwanted advise like getting some x-rays done. You know, because I never thought of that. It would fix all my problems!! Haha I've had so many x-rays and scans that I'm probably a bit radioactive by now. That's why my toes always glow when I'm somewhere dark. To be honest, I'm just not looking forward to the wheels at all, at least not yet. Yes, it could signify a new beginning,but for now I'm seeing a lot of things ending. Why do transitions have to suck ? I think it's time I invent some kind of extreme wheelchair something or other.

Those are my jumbled thoughts for now, maybe during the night I'll come up with a brilliant plan that involves a hover-chair. Now that would be cool! Writing these posts when I'm a little more coherent would probably make some sense too.

For now, this awesome video will have to suffice.

http://www.youtube.com/watch?v=SmSl49bTI1A&feature=related

"Obladi Obladah, life goes on...."
(The Beatles)

When reality smacks you in the face...

I seem to have gone post-crazy this week. Whatever, it helps me deal with everything that's been thrown at me. Blogging costs so much less than seeing a psychologist. It's also convenient, as most of my posts are written at stupid o'clock in the morning. Hopefully, you are getting something positive out of this too. Even if I'm writing about what some of you are going through, I know it's exhausting and the furthest thing from fun. But, the positive in all of this mess, is that someone truly "gets it". I get it, and so does every other bendy person who reads my crazy rants. For anyone else reading this, thank-you for trying to "get it", it is very much appreciated when you feel like the rest of the world doesn't want to even try.

On top of seeing awesome GP today, I had an appointment to be put back together (literally) with my chiropractor. There is nothing like the feeling of having everything back where it belongs. It's wonderful. We were talking about the insanity of my past couple weeks, and what my body has decided to put me through. Yes, I think my body and I are separate things...forget the whole mind and body connection, there is no connection when you feel like chewed gum only resentment.

To get back on topic... She asked me something that I have been thinking a lot about, but have never really talked about until now. Aren't you lucky?! She wanted to know where I see myself in five and ten years. *insert panic, fear, anger and sadness here* I guess that's what happens when you haven't yet fully accepted life with EDS. I've accepted that I have it, and it won't go away, but definitely have not accepted that it will most likely get worse. I'm not saying it will get worse because there needs to be some optimism and hope in all of this. I will say that I'm having a really hard time accepting the big physical changes that comes with EDS. I've been comparing myself last year to this year. There's a big difference and I don't like it. What I hate most, is that I have absolutely no control over it. That's the biggest thing I'm learning to deal with right now, my lack of control over my body which also means I can't control what will happen to me in life. I keep thinking that if I did this, or if I did that, my body would get better or would plateau and everything would fall into place. Stupid reality.

I was talking with my bendy friend Sama about all of this and she helped put me back in my place. She explained the why's and how's of life with EDS and it all made sense. There are some things only a bendy friend can explain. Some of what we talked about is here, I really suggest checking it out if you're having a hard time like I am. http://www.youtube.com/watch?v=OMl7rr1M3M0

Where do I see myself in five years...I have no idea. I know that I will most-likely be in a wheel chair because even now, there are days when I would love to have one. I know that I will not be working my jobs that I am now, and that probably any kind of physical activity will be a thing of the past. I see myself being an awesome child-life specialist because I "get it" and being a pro-star advocate for the kiddo's I'd be working with because I've been there. I don't know about relationships, new outlets or even where I'd be living. In ten years, I won't even go there it's too far beyond what I could even imagine. I know where I would love to be in five and ten years but I need to be realistic and find new goals that I can achieve. What I do know for sure, is that I'm going to try my damnedest to make it all work for me. It will require a ton of adaptation, learning how to swallow my pride and ask for help. It's a good thing I'll be able to put my super-power (being stubborn) to good use. The last thing that I know of, is that at the end of the day I will take away something that makes me grow as a person, and that tomorrow isn't far away.

" To fear is one thing. To let fear grab you by the tail and swing you around is another"

(Katherine Peterson)