October is Dysautonomia Awareness Month

Life is weird.

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Somehow I managed (on the first day no-less!) to remember it's Dysautonomia Awareness Month, and I started to think about what I would do for it. A few years ago I posted a "tid-bit" for every single day in October, while other years I just change my profile picture and offer a brief summary of my story while inviting questions.

But man, this year? This year I just don't. want. to talk about it.

And I'm not sure why.

I have been managing really well lately. The cardiac rehab has changed my life drastically and I am participating in my life more than I have in years... maybe ever. But sometimes it's like, I reach a point where I'm just tired of it. Not necessarily that I'm ashamed of it and my struggle or anything like that. But, rather, that there's a sweetness in people looking at you and just not knowing.

I played soccer today. It was tough but I am so fucking grateful for it and every day I have been able to do so. I fully realize this is huge in my journey and that many have not been able to make it this far. But here I am, the first day of Dysautonomia Awareness Month, bitching about how I don't want to talk about it. I'm DOING THINGS. And all I want is to just keep doing them. I want to do them until it's no longer a fight. Until my life is entirely full of the DOING THINGS and completely without anything that one would find in awareness month posts.

But that's just not how it goes. I am fully aware of how freaking hard I have worked and how lucky I am to have that work pay-off like it has but... it is just always. going. to be there. isn't it.

Maybe that's part of why I don't want to talk about it much this month. Because it's been such a mind-F for me. Maybe, without my even realizing it, part of me was subconsciously thinking this is how it could be from now on. That this level of living would continue, this taste of life would be all there was. And then I have weeks where I get my ass kicked in exercise and I come into contact with someone who is sick and I go right back to be absolutely terrified about catching their illness. It's a realization that, no matter how great I am doing, I'm always going to have to worry. I am always going to be susceptible. I am always going to potentially lose everything all over again.

In a weird way, I think being full on in the shitter was "easier" for me to handle. When there wasn't hope. Whereas now I have been blessed with brief moments in which I haven't really had to think about it. I still always have to plan, of course... have water with me, take my meds, gauge what I'm going to do in a day... but there have been moments where I've caught myself passing as some semblance of a relatively normal human person. Where I felt free. Unburdened. Like the entire world and my future was suddenly unrolled before me, all these new opportunities—to which I had sorrowfully said goodbye years ago—suddenly there, smiling at me. Eager. Just as happy to see me again as I was in seeing them.

I don't know. None of this is making any sense. And I'm just frustrating myself more because I really am truly thankful for these past months. I'm not looking a gift horse in the mouth. I just... I just want to be seen without it, is all.

I just want to keep having these moments where I can pretend or feel that maybe it'll be okay.

But that's just not an option. It's not. My condition continues to fuck up situations left and right... new ones now, too, that I am not even close to wanting to talk about. When all I want is to close my eyes and just be the girl on the soccer field, breathing hard because of a beautiful reckless living and not because her heart feels like it's about to break her ribcage and her lungs can't remember how to work or her legs collapse because they seize up without enough oxygen.

I just want to close my eyes and be the girl who sweetly thought, for a moment, that life had finally unfolded in beautiful, glorious possibility.

Honesty 2016

At the beginning of this year, I skipped the typical resolutions and, instead, decided to choose a word I wanted to live by for 2016.

I wound up on "honesty"a supremely challenging word for me but which, as I look back on now, was far more beneficial than I could have imagined.  

I learned many things along the way, but the most poignant was how being honest forced me to live and be an honest version of myself.  This, of course, is not to say I have been lying about who I am. Rather that (as I think everybody tends to do to some extent) I edit bits and parts of myself depending upon to whom I speak.  

But I stopped doing that in a number of big ways this year, and while it was terrifying and difficult, the results I encountered have been something I've been reflecting on for some time.

It started just being more honest about "little" things: if I had to back out of a planned outing, saying it was due to my chronic illness or not feeling well, instead of covering up for it in some way or another. I worked on being more open with people close to me, trying to express a little bit more of my thoughts and my self than I normally would. I no longer said "I'm fine" if I wasn't, worked very hard not to say "That's okay" if it isn't, and generally tried to be more forthcoming.

As this progressed, and I grew more familiar with living more honestly, I realized it was about far more than being honest for/to other people. I had thought being honest would only be a pathway for people to get to know be better, understand more things. And while it most certainly was, the biggest thing I took away from it was the freedom it gave to myself. Being open and vulnerable showed me exactly how "comfortably" I had lived for so longwhich isn't a bad thing. It is self-survival and protection, an absolutely necessary for all people and me during that time. Before this year, I did not have the skills and the growth and the support which allowed me to jump into all of this; I have been working toward this for years. 

I thought, by the end of the year, maybe I'd be less afraid of being vulnerable and have a desire to be more honest with people. This might be true to some degree; I want to continue trying to be honest and it is still more terrifying than not. But what I never expected was to be more OK with me. Yes, most people accepted me and it feels AMAZING and, yes, some didn't really and that hurts--but, regardless of these outcomes, I had begun to live a truer version of myself. And, in doing so, I have found more peace within myselfwith who I amthan I could have ever expected. 

It's like it removed the question of it all. Can I still be loved if I am still me? If I say what I think and feel? And this is the answer: yes. And, also: no. Other peoples' love and acceptance has given me so much, but there are some who have had trouble accepting who I've become and what I believe. But now I don't have to be curious about them anymore, I don't have to wonder. It feels backwards but living honestly has helped me to  see how sad it ishow it is about them and not me. I has made me less afraid of myself and more capable of telling them I am proud of who I have become.

This little word has set me free in many ways, many of which I had absolutely no idea how, or to the extent, it could. But credit does also go to those who have not only let me speak, but also heard me. Who have understood my fear. Who saw my vulnerability under comments/texts/words that  most people would not realize were so fragile and connected to me, and met them with caring hands. It's because of your love, which continues to helps teach me to love myself, that I have the courage to keep living an honest life long past 2016.

My (Radical?!) Guide to Eating Healthy For The Holidays!

Every year, without fail, I see articles talking about how to "eat healthy for the holidays". And, every year, I want to throw something at my computer because they only perpetuate dangerous ideals. Mainly that some foods are "good", some are "bad", and we all must carefully navigate through the forthcoming edible minefield OR ELSE.

So, I decided to come up with my own "guide" for eating healthy during the holidays. And it goes a little something...likeathis...

Eat What Sounds Good To You
I am serious. And don't call me Shirley.

I am serious. And don't call me Shirley.

I know this is a revolutionary idea for diet companies/food companies/basically everything. And I know the aforementioned are shitting themselves at my very suggestion of such a thing. But here's what I've learned in my years of pre-, during-, and post- eating disorder/recovery/whatever phrase suits ya best -- if something sounds good to your body, that's not a bad thing. Because, as I mentioned before, foods are not inherently good or bad. They're (oftentimes extremely delicious) things that help make our bodies go and jump and hug and throw large objects at our computers when we read frustrating articles. 

Eat a Variety of Stuff

Sure, no food is good or bad, but eating one type of food (even if it was on my "good" list during my disorder) doesn't do a great service to my body because I'm not getting all the nutrients I needed. In fact, I actually feel better and feel I am taking better care of my body when I eat a variety of foods, including foods that used to scare me. Bananas, pudding, soup, sandwiches, cookies, salad, apples with caramel dipping sauce, pizza, zucchini bread, fresh green beans, PIE and MOAR PIE, etc. Each has something to offer me. It's when I'm only eating one thing/denying myself other varieties, that makes it so my body *needs* something else (which often led to purging). 

Eat When You're Hungry, Stop When You're Full

Sounds simple, but it can be incredibly tough. The body is a pretty fantastical machine and can let you know what does/doesn't sound good, when its had enough/wants more, but I knowfirst handhow this sensation can often be lost in the throes of an eating disorder. And it took me a while to not only get it back, but also to trust it. I had to eat very slowly and very mindfullychecking in with myself after each bite. "Am I really full or is that my brain trying to tell me I am?" And then be proud of myself for stopping when I was full, and/or continue eating food if I was hungry. (Oftentimes, if I wasn't sure whether I was full or not, I would stop and remain mindful after the meal in order to see whether I was hungry still and, if so, head went back to fridge and honor that feeling.)

It's OK To Be Full

There is nothing wrong about eating to fullness. Nor is there anything wrong about having more food than you did the day before. Some days I'm more hungry and some days I'm not, so some days I eat more and some days I eat less. That's normal.

*

My list is pretty short compared to the many I've found, but I feel it covers some good basics. No part of this is easy, of course. Not for people who've struggled with eating disorders or some form of disordered eating, or anyone who has been led to think/feels that food is an enemy to struggle against. For me, getting anywhere near to these concepts came after a lot of practice and therapy, so if you aren't "there yet" that is OK! Every single step I took is what got me to this point, even the ones that didn't feel big at the time and especially the ones I wanted to skip over.

Each year I can't help but reflect upon all the Thanksgivings and Christmases that were torture, and how nice it would have been for mewithin the horrific repeats in my mind and self-hate in my heartif there was another "guide" that spoke of food so differently and showed that all the excruciating steps I was taking might lead to a completely radical (and freeing) relationship with food. Regardless of how far fetched it may have seemed at the time.

This makes me want to add one more thing to my list, actually:

Reach Out If You Need Support

There is nothing wrong with needing support through the holidays (or at any time)! For the past two years the hashtag #THX4SUPPORT has been used on social media (you can read about it here) for those who need some community on difficult days like Thanksgiving. I'm not sure if it is being "officially" run this year, but that doesn't mean people still can't use it and support each other if necessary. (Also, don't hesitate to tweet me (@SEtotheCarson) or drop me a line or whatever if you feel drawn to do so!).

And, no matter what, keep fighting to know that you deserve to be happy, to feel and know you have worth, and to be free.

Love,
s.e.c

Thoughts on Therapy

Sometimes, this is what recovery/being recovered looks like for me:

I have to take extra care that all the nutritional labels are either directed to the back of the pantry, or upsidown and against the cabinet shelves. 

I have to actively tell myself that my pants aren't smaller. And even if they are, I could stand to gain some weight. And even if I have gained weight, it's ok. 

I have to decipher whether I would normally have that FOOD if that part of my brain wasn't so heightened and, if so, still eat it if it sounds good.

***

I have always felt that when my mind kicks up, it's for a reason. Something going on in my life, feelings I haven't processed, etc. When it does, the first thing I always try to do is figure out where it's coming from.  

This is rarely easy or straight-forward. And I'm aware that, sometimes, it might just be chemical/brain-based— that, for whatever reason, that day everything-about-me-which-can-short-circuit does. These days days are very difficult for me to handle and accept, because there is little I can do. If I can't figure out a probable cause, I can't examine it and feel like I'm DOING something. I know I am not the only one who struggles with needing to "actively do something"; it is a large contributor to my actions and tendencies. And it requires continual practice on my part to understand that, sometimes, not doing anything is doing something.

Regardless, lately I've been starting to dig into some deep down stuff. Therapy can be such a process; I've had to start at the top of the muck and keep digging away and away, like an archaeologist. And only recently have I started to get to some things that are ingrained. Things that didn't happen and I needed them to. I have had an inkling of an understanding regarding these Things for a while, but had never determined what looking more closely at it all would do. I am aware of it enough, I'd think. And nothing now could change it. But I don't know. I suppose if I poke at it, like I'm beginning to do, and it still bleeds, then it's still something I need examine. If it's not scarred over, or fully healed, and it still can turn on that part of my brain, then it's still unresolved. And it's just like anything else I've ever done in all this—no promise that rummaging through painful self-reflection will feed any benefits, that nothing will come from it other than more pain and more days where I have to be even more careful with nutritional labels than usual. That I could very well slip after nine years of steadiness. 

But there has never been any promise, has there? Just the closing of my eyes and sheer god damn stubbornness.

And yet here I am— in all my fight and floundering— and I will keep doing that which scares me.