I'm in that boat right now. I've got the most amazing and brilliant opportunity to cease, or it's move home with my parents in suburban hell. I want to make this happen, and it's very possible to make it work with EDS. I've essentially got it all figured out, but can't get myself to actually make it happen. I feel stuck and essentially paralyzed by fear.I used to think I was invisible from that part of EDS, stupid me. Instead of doing what I need to do, I'm writing a blog post at 2am.
I'm scared that I'll get everything together, it will all fall into place, then EDS will turn uglier and it won't be able to happen. That's exactly what happened when I applied to a specialized program in England. I got accepted during my interview, and scored a huge scholarship. I had everything I needed to go, with the most important things being passion and drive. EDS got worse, and there was no way I'd physically be able to do the program. I had to give it up. Some people think I just walked away from it, and blamed it on EDS. This was just after I officially got diagnosed and wasn't nearly as bad, but I was quickly falling apart. Instinct told me that EDS wasn't going to stabilize anytime soon, and would get worse. I don't blame or resent anyone for thinking how they did, but when I tell someone about my newest opportunity and they bring up how I chickened out of England....that's not fun. I sure as hell didn't back out because I wanted to stay here, and it really wasn't a choice. I'm terrified of it happening again, I'm tired of having my little world that I worked so hard to create, come crashing down. The irrational and pessimistic part of me is saying "don't even bother", "it's going to happen again", "EDS is bigger than you"...Isn't negative self-talk fantastic?
Apparently I'm sleepwalking again. My room-mate said that instead of just walking around the apartment doing random stupid things, I've managed to leave the house. I wake up with everything exactly where I had left it before I went to sleep , including myself in my bed. Apparently, I managed to throw on a pair of shoes, somehow remembered my keys, walk down a flight of steep stairs and make my way around outside. Now, she didn't actually see me do it, but she heard clomping shoes, she heard me talking to myself, the door open and me go down the stairs. She thought I was just taking another trip to the ER. So, I have absolutely no idea what I did, or where I was. Holy scary Batman! I'm convinced it was house trolls.
I could very well be sleep-walking again. I thought that because I was doing really well in the sleep department (well the sleepwalking and anxiety part) I stopped taking one of my supplements that helped with it. It's expensive and it would have been one less thing I'd have to keep track of. I tend to sleep-walk as a grief-loss response. I'll be unemployed in about two weeks, and leaving one of the greatest jobs on the planet. One of my bendy friends died and I'm coming to terms with the very real possibility of moving home. I just love it when my worst nightmares come true, thanks EDS. I've gotta go back on those supplements but I'm still blaming it on the house trolls.
So on to more positive things....
My plan for the Kangaroo pump has worked out well. *knock on wood*. I've been putting 500mls of my concoction through when I wake up and go to bed, and have been feeling great. I think it's helping prevent crashes during the night, and it definitely kick-starts things in the morning. I throw in my Vega mix through a syringe, and I'm good to go. If I do that, then I usually have a close to normal appetite and can eat throughout the day. If I don't do the mix or Vega, then I'm back to not wanting anything to do with food or liquids. I still choke and aspirate on everything, but I love food too much to completely give it up, and am nowhere near ready.I'm eating peanut butter on celery right now, mmmmmmmmmmmm.
Yesterday, was spent with the Toronto and area bendy posse. It's always nice being in the presence of people who truly get it, where you can ask anything and no one will get freaked out, and where you're "normal". We went hot-tubbing for two glorious hours. Well the three of us who are POTSy, had to switch between the hot-tub and pool quite often and drink a ton of cold water but it was awesome. There's nothing like floating, and having ALL of your joints stay where they belong, not to mention the most wonderful pain relief. Gravity is over-rated. The Tegaderm patches were brilliant, Jerome stayed happy and dry. The epic tape rash wasn't so wonderful, but well worth it.
I know there are a lot of us who are just plain stuck. It sucks, and we all want to move forward. I was introduced to this book this past summer, life was pretty awful, and it really helped me put my head back where I like it. If you see the world like I do, (in terms of beliefs) the book is brilliant, and just might be the thing that motivates you to get back in the game. It's called The Four Agreements, http://www.miguelruiz.com/index.php?p=Books., and yes, I will be reading it before I go to bed and reminding myself what I need to do.
This is where I need to take my own advise...
A lot of people ask how I manage to keep it together and work my way through life with such a positive attitude. Just so you know, it's not easy and not always positive. I just had a nice little melt-down tonight. But, I am living with EDS my way. Not anyone else's way. This is my body, and my life. I've had to fight hard to get to where I am now, and not everything has worked out the way I planned, but I'm still doing it my way. We should all do what works for us, and do it our way. If it feels right, do it. If you're not sure about something, take your time and think about it. If it still doesn't quite feel right, then don't do it. That also goes with dealing with stupid doctors who think they're god. Don't take any crap, you're allowed to fight back and you're allowed to get rid of them if they're not helping. No one has consent to make you inferior, and it's always nice to serve someone like that a piece of humble pie. I guess the most important part, is to be completely honest with yourself, and trust yourself. Have confidence that you know what is right for you....because you do.
P.S. Jerome says "hi" and that he likes vodka.
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