It took a few days to get enough motivation, to even think about attempting another start at life. It doesn't change the fact that I'm still really tired and just sick of it. Before I was ready to get back up and keep moving, I needed to process and just be. This happy-go-lucky girl needed to put away the positive attitude, and face a lot of hard, scary shit. There is something good to be said about sitting alone on a beach in the dark, having a good cry and a talk with the universe. Maybe because I like to do that stuff alone, or maybe it's because when I'm near the water, I feel whole. Either way, it was where I needed to be at the moment, and it felt good.
None of it means my situation has changed, or suddenly become better, but it means that I took a long hard look at EDS, and decided that I was still going to kick it's ass. Not that there's really a choice.
A huge part of being able to start digging out has been the incredible support of friends. These are the people who accept the whole package that is me, even when I'm not all smiles with sprinkles and a cherry on top. They offer to come visit, go out for a bite, and do things that make me happy. They find ways to keep me engaged in the world, and let me be alone when I need it. There's always a listening ear along with a laugh and encouragement to keep moving forward. Really, what else do we need in life?
I think I may have found another game plan to avoid the ER for a while. Since I can't seem to handle anything by mouth before I put something through Jerome without puking, and always feel gross waking up, I'm pretty sure it's a dysautonomia thing. I'm going to see if getting 500mls of some home made natural electrolyte/saline type concoction on a gravity t feed will work,.Hopefully if I do it first thing when I get up or am feeling extra gross, it will yield some results. I guess the bonus is that I can still lay down and just chill out instead of trying to fight with feeding J, because sitting makes things worse. Not to mention, if I feel like I'm going to pass out, I'm already laying down.
I found this awesome vegetable peeler over the weekend and love it! My fingers don't dislocate!!
http://www.chefn.com/Product.aspx?id=51
In the midst of this funk, I realized that even though things are crappy I'm still really lucky. I may not be one of the "lucky ones" who we all had hope of being in the beginning of our walk with EDS, but I think I fall into a different "lucky ones" category. Sure, I feel like ass every single day, I need a braces, a wheelchair and a million other things to function. However,I have avoided a lot, and have been able to live a pretty damn good life. Aside from getting Jerome and fluids, I haven't needed any other medical intervention. None of my organs have prolapsed, I haven't needed any othro. or neuro. surgery, or crazy meds to be able to function. Everything else has been tests, consults and fighting so I can do it my way. I am lucky because I have found awesome people who always try to find ways to make life work with natural and Chinese medicine, who have never given up when everyone else has. I'm still scared shitless at what could happen and what will most likely happen, but sitting and waiting around for it to happen is so unproductive. So, I say eff it. I'm going to do it my way because you only live once, and there's only one way to find out if something will work. If plan "Z" doesn't work there's still room to come up with something else.
I hope for any of you that may be in a funk; that you can face the scary shit, decide that you're going to kick it's ass and can start moving forward with a new plan. Remember to do it in your own time, and in your own way, because that's really the only way.
"When I find myself fading, I close my eyes and realize my friends are my energy."
Thanks. I totally needed this today. Not giving up on myself is hard, especially as the holidays approach and everyone notices that I'm not all smiley and dishing out the peace, love, and happiness. Finding a mentor who really believes in me is simultaneously both amazing and terrifying, as my brain keeps telling me that she's just another person I'll disappoint.
ReplyDeleteBut. I must keep moving forward. Find things I enjoy. Walk the dog. Knit. Sew. Read again. Blog a bit. Exercise. Eat. Keep on fighting my crappy chronic illness. Because letting it win isn't an option.
However, we're all entitled to a few days now and then of admitting that chronic illness does, in fact, suck, and that it's exhausting to be so strong all of the time.
So, keep on fighting, but don't feel awful for needing a break once in awhile. It doesn't make you any less awesome.
Good to hear you're still planning that ass-kicking. I wish this type of ass-kicking could be the quick, hard, trashing then it's over like normal ass-kickings, but really it's more like treading water. Endurance ass-kicking. New Olympic sport. There's a bunch of us doing it--you're not alone. Keeping you in my thoughts.
ReplyDelete