October is Dysautonomia Awareness Month

Life is weird.


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.

Can I Get a Punchpass Please?

So, my health has been less than stellar the past couple weeks. Thankfully, it's been somewhat manageable (I've been able to bathe, fix myself simple meals, etc.) but it hasn't allowed for a lot of that necessary extraneous energy that helps keep homes in a livable state and silly things like that.

I was diagnosed with another chronic illness at the end of December (which I'm still processing) and whether that ties in to how cruddy I've felt, I don't know. I doubt it, because I've probably been dealing with this issue for years. But, regardless, I've decided I would just like a punchpass on my chronic illnesses if I could, please.

I think most people with chronic illnesses probably would, honestly. In fact, if we could have a quota, that would be super awesome. "I'm sorry, potential new illness. I already have two illnesses with slightly mind-numbing pain, so we're all stocked up here!" or "Hello, new unknown hurt - I already one illness with I-want-to-shit-my-pants pain so if you could just move along, that'd be awesome!"

But it doesn't work out like that.

And, more importantly, rarely do people with chronic illnesses generally allow themselves to think like that.

We're the grin and bear it types (and we often pride ourselves for that). We're the types who are in-tune with the world, more so than most, that we can still see how good we have it. We can rationalize that some people are dealing with cancer, some people don't have warm beds to nap in, some people don't have legs to even ache.

And while this is an exceptional mindset to have and take with us, I think some days we just need to look at the hand we've been dealt and allow ourselves to be pissed off about it. It may not be the worst hand ever. There may be millions of other people who were dealt more variations/amounts of crap than us. But that doesn't (nor should it) take away the fact that this is still our reality. We are still in pain. We are still suffering in our own ways, too. And to deny that, to ourselves or to others, does not serve anything.

I'm a big advocate of "giving up". I wasn't always this way, though. In fact, I was probably as far on the other side of the spectrum as one could possibly go; when life knocked me into the shit I always bounced back up immediately. Because I am stubborn. Because "that's what strong people do". Because lying around feeling sorry for myself wasn't going to fix anything. And while some of these may be true, constantly getting knocked down and immediately standing back up again is ex.haus.ting. Mentally, physically, and emotionally. And it took me a long long long LONG while to realize that, on some occasions, I had to give myself permission to stop and lie in that pile of shit. To say, "Dude, I'm in a pile of shit right now. And this shit sucks. I am not happy about this shit."

Because how can I accept my situation if I don't ever fully acknowledge it? If I don't let myself feel, to the very depths and ends of my feelers, the emotions I have about it?

And you know what? I know, at some point, I'm going to get back up again. That's just what I do. That's just how I'm made. But I have to honor the part of me, the feelings I have, that aren't always so warm and fuzzy and positive about my chronic illnesses. I have to let myself lie in the shit and look at the stars and bitch and moan a little bit while I renew my strength so that, when I am ready to get up and fight again, I will have a new place to start from. I won't have to carry buried resentment I might have for these illnesses, because I'm already shouldering enough weight carrying the illnesses themselves.

So, I'm holding up my punchpass for today. It's my wee little white flag that says, "SEE THE PUNCHPASS, CHRONIC ILLNESSES? OFF. LIMIIIITS." followed by a menagerie of colorful language. Maybe I will hold it up for a couple days even, I don't know. Because I'm frustrated. Because these chronic illnesses suck and I'm pissed at them. I'm pissed I have a new one added to my list that I have to worry about. I'm pissed because I'm stuck and I don't feel well and fighting all the time is exhausting. So, yes, I'm gonna go over here and grumble and bitch for a while, shake off the chips on my shoulders, and then at some point I'm sure -- I'm not that concerned about it -- get back up and kick some more ass.

Because that's just what we do. That's just how we're made. Especially when we've given ourselves permission to feel what we need to feel about it.