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.

Week 5: Day 2

For the most part, I've been surprisingly able to scrape together enough motivation for rehab days. I think a lot of this is because they have made sure I don't go overboard, run myself into the ground, and get my ass kicked by the mind-fing fatigue. But man, today? Today I am cranky. Weather is all wonky, my period just ended, I'm tired, have had no focus in order to write or do anything creatively productive. And all I can think about is how MUCH TIME it takes me to do EVERYTHING. How I want to speed up but I can't—at least, not without fantastical bodily repercussions. I can't write this damn book any faster even though it's been years; I can't pedalpedalpedal through this program any quicker to the end of it/possible new quality of life; I can't take my sweet, darling dog on all the long walks she deserves and has missed out on over the last 10 years of this crap.

But it's not like I can slow down, either. Because that would just add to all the time it takes to do everything. Because then I would just be sitting still. Wouldn't I?

I try to take things as they come. To understand limitations and the reality of my situation. That things will happen when they will. And I'm usually pretty OK at keeping this viewpoint at the forefront. I have to be or else the stress and worry and emotional turmoil of it all would just exacerbate my body and nervous system and I'd wind up even farther back in my progress. But goddamn, is it frustrating.

So while changing my expectations and not perseverating on things has been a HUGE component of getting my health where it currently is, I have been flop-moping around the house all. freaking. day. Protesting and procrastinating on today's rehab like a champ because if there's one thing I can do other than throw silent, pissy tantrums, it's procrastinating.

But, the thing is, I know I'm gonna do it. Hell, I'm looking for my workout pants right now as I complain. Because what other option is there? Sure, if I couldn't physically do it today, that's one thing. But my pain is currently manageable. My fatigue, although present and accounted for, is no where near the shitbucket levels I've had in the past. So, really, what other option is there? I've already tried all the other stuff. I've tried not working out, not hydrating, not doing the bajillion other things I need to do daily. And I know where it gets me. So yes, while everything takes far too long and days (like today) I feel absolutelyfuckingcertain I will never accomplish any of my dreams, it's still happening right? I'm writing intermittently but I'm writingish. I miss soccer something fierce, but I'm exercising three days a week. Granted, it's low-level intensity compared to my full-on athlete days but, I mean, the last time I did any form of exercise three times a week was more than a decade ago. And Niyabear still isn't getting all the walks she deserves, but god am I trying.

And yet some days I can't help but think how nice it'd be it were, just, more. If #RareDiseaseDay was just the ONE day—where we can post all these infographics and things about POTS and then forget about it the next day like everybody else. But no, #RareDiseaseDay is every single day. And shit, I am still doing it. I have been doing it. And I will do it again today—not with a smile on my face or ounce of hope in my chest, but fuck it if I'm going to give up now. If I'm going to give up ever. There is too much I want to do. Too many walks I want to take with my puppy and too many things I want to see and and too much life I want to live. So if my choices are it all taking years upon sodamnmany years vs. never getting any of my dreams at all, then you can find me and my cranky ass pedalingpedalingpedaling away on this stupid, infuriating, and ironically-stationary, bike. Because, even though I may not be going as quickly as I would like, I'm still going. 

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.

November Dandelions

I sat outside to get some fresh air and watch my pups romp. Nature always helps me to reset, if only marginally, regardless of whatever is going on. Today was no exception.

Currently, there are a lot of things making it difficult for me to feel grounded and steady. Most obviously: today's election and the undercurrent of unease, fear, and even anger emanating from pretty much everyone I come into contact with. Not to mention my own variances of those emotions with which I'm try to balance and grapple. 

But there are other things as well. Largely difficult and emotional things friends are going through, as well as some somewhat painful self-growth and deep-seated things I'm trying to sift through myself. 

So, I sat outside to get some fresh air and watch my pups romp. I thought about how interesting nature is; how, in so much turmoil—like today's and all the various turmoils and changes that have come before—nature just goes. Not actively or outwardly, really. But with a quiet strength and steadfast feeling I want to wrap around me.

And then I wondered what it must be like to be so stable, to move along without too much change between one day and the next. How, when nature does change, it is slow and deliberate. How even its changing is steadfast. 

I thought about this and smiled at my fluffballs as they sniffed around, wondering what I could do to help with all this chaos inside of me and around me. And then I found, next to my house where I usually sit, a wee dandelion.

Dandelions are my thing; I have had a long standing love-affair with dandelions for a myriad of different reasons. But in all my years, I have never seen one this late in the season.

So I sat outside with my dogs and breathed the fresh air and found this rogue dandelion and now I think: maybe we'll be OK. Maybe we'll be OK as long as we keep close. If we work to surround ourselves with people who know us and love us. People who forgive us if we act out of anger and who will listen to us when we try to speak. People who get us and root for us, who shelter us and believe in us. And the people who don't? To do neither harm nor spend too much of our energy on them if it is not appreciated.

Usually I pluck up dandelions, make a wish, and give them a blow to the wind—but I figured November dandelions are special enough to warrant a change, don't you think? So I stayed on my step, took a deep breath, and made a great big wish for all the people in my heart. All the ones I keep close. And then I smiled and went back inside, leaving the dandelion where it found me. Because, this time, it felt better to keep its little roots in, down into the earth. The earth that just goes. Not actively or outwardly, but goes. Just goes and goes with a quiet, steadfast strength.

 

 

Just Sarah (Addendum)

The other day I wrote about having to tell a potential new friend I couldn't go on a 6 mile hike because of my health and how, for whatever reason, that was really difficult for me to do. I knew it was a passing emotion and usually I probably would have found excuses for it and what not. But I felt it and I honored that so gold star!

However, a couple dear friends reminded me of something very important:

Everyone has limitations. They are all different. Some may be obvious, some aren't. Some maybe persistent while others may change. And while, yes, limitations due to chronic illness are tough and unique, that doesn't change the fact that everyone struggles against his/her own self in some way or another.

So, I'm glad I was open (#Honesty2016, y'all!) because I realized that sometimes I focus so much on explaining what life with chronic illness can be like that I forget how we're all still a lot the same.

And, also, what else could make me feel more like Just Sarah than good friends. <3

"Each has their sufferings." <3