Messages in a Bottle #16: How to Dilettante with Dysautonomia

CW: Mentions of consuming alcohol in a safe and responsible way.

So, uh, how about what is going on in the U.S. right now?

Which part? Well, uh, all of it. Plus whichever thing has most recently happened as of the time you read this post.

The U.S. was a pretty systemically horrible place in our ‘old’ normal. It’s a pretty horrible place in our ‘new’ normal. I can’t honestly say as a person who predicts things for a living that I predict the fact that it is a pretty horrible place to change in the near future.

This is not to say I’m so cynical that I don’t believe change is ever possible. I’m just noting that 2020 is the kind of year, at the global level, that I describe at the more personal level as “Hell.” As in, the entire U.S. seems to be doing its level best to mimic the 9th Circle of Hell of my childhood. There are plenty of good reasons I gave that particular pseudonym to the state of my birth, and none of those reasons are ones the U.S. as a whole should want to emulate openly.

Yet, here we are anyway. I’ve heard my own term of “Hell Year” bandied about a fair bit by others to describe 2020 recently. Given my own personal experiences, though, when I hear “Hell Year,” I tend to immediately want to remind those others that when I say “Hell Year,” I take the year part of it at face value. I fully expect that the couple of serious posts I considered writing for this week will continue to have their time and place in the coming weeks and months. So, I’m not going to write any of them this particular week.

I’ve been through Hell Years before, and I’ve learned from them that you don’t get through them if you don’t sometimes stop and forcibly insert some good days within the unrelenting bad ones (at least to whatever degree that is possible given personal circumstances.) If you don’t take some genuine breaks from everything that is piling on, you don’t (or at least I don’t) have the stamina to deal with whatever next thing the year is going to bring.

I wrote about another time my brain just needed a “good” day at about this time two years ago. That particular Hell Year was brought on by a different flavor of the same systemic b.s. that is still so defining of the U.S. today. I wrote of that one:

I know I can’t outrun the hard truths, but that makes it all the more important that I run away just often enough to run towards some good days.”

It seems 2018 me was surprisingly wise sometimes for mostly being a dissociated puddle on the floor.

Hell Years are Hell. For anyone who feels guilty practicing self-care because it feels so stupid and self-centered amid the collective well, everything, that is going on, don’t. Hell years are a marathon, not a sprint. Social justice in general is a marathon, not a sprint. The hard truths that demand change today will still be there to demand change agents tomorrow, and next month, and next year. It’s okay to take a frivolous day sometimes, as long as you don’t only ever take frivolous days.

This weekend is going to be a frivolous one for us. We enjoy craft beer, and in a world where we can’t go to a craft beer fest, a virtual craft beer fest will be coming to us. A “hand-curated selection” of hopefully delicious snooty beers showed up to our door today. This weekend, we will swirl those beers around in their appropriate glasses (because we do totally own a set of proper beer glasses of the most common shapes and sizes) and consume them while a brew master on Zoom describes what we are supposed to be tasting in exquisite detail.

It is thoroughly dilettante, and, therefore, it will hopefully be a welcome respite from our general state of world fatigue. We willingly overpaid for those hand-selected beers from around the world knowing that the proceeds would go towards keeping local restaurants and independent breweries afloat amid our global pandemic, and we are going to enjoy them.

And you all should enjoy at least some carefully “curated” good days to whatever degree is feasible for you financially, mentally, physically and socially, too. Even though 2020 is a Hell Year, and there is so much that needs to be done.

Because, really, we’re only halfway through this particular Hell Year.

There will almost certainly be more opportunities to engage in the serious work moving forward, and self-care is not selfish even in a Hell Year. So take a good day when you can.

The post below is undated, but given the events it describes, it is from sometime in early fall 2017. I had recently obtained a name for the mysterious chronic condition that had been making me faint in public, and I was working through how to engage in some oh-so-necessary bits of the aforementioned dilettantery without falling over.

I have my doubts as to whether the specific annual large public social event I described below will still run in the far-off world of fall 2020. We may very well ultimately break our streak of attending every single year simply because the event itself ceases to exist. However, for those wondering, the advice itself, at least, holds up reasonably well. The bits about handling large outdoor physical events with lots of people aren’t necessarily that relevant to my current planned weekend virtual event, but the bits about the drinking of the beer itself and using the tools available to stay physically and mentally healthier instead of worrying about what others will think of it still are. (2017 me was apparently also occasionally reasonably wise.)

And, one very good thing about our upcoming virtual iteration of our beer fest date night tradition, looking back, is that – while 2017 me had to worry about standing in long lines for the restroom while dizzy – at least 2020 me knows that there won’t be a line for the bathroom when she’s drinking on her own couch.

This post in my old locked journal was originally titled, “How to Drink with Dysautonomia,” which is important to know for the first line to make any sense!

Fall 2017

This should be a short post: don’t!

Seriously, dehydration from alcohol + the chronic dehydration of dysautonomia just isn’t worth it most of the time.

But, if you’re still reading, that probably means that you sometimes find drinking (responsibly and in safe quantities) to be worth it for some reason. Maybe you appreciate a nice IPA at a BBQ, or a glass of wine and some good cheese, or happy hour with friends.

Or maybe you don’t drink at all, but you know that feeling of wanting to do something you enjoy doing so much that you are willing to do it even though you know how hard you will crash afterwards as a result.

Because that is what drinking with dysautonomia is for me. It’s something I know isn’t actually “good” for me, but I just want to do anyway because it is important to my Partner and me. It’s a tradition we have together that, after careful thought, I’m willing to put up with a pretty significant crash to maintain.

One of our very earliest dates was to a craft beer fest that we later learned was the inaugural one. That beer fest is, thus, as old as our relationship. As such, we have gone back to it every year, even though the fact that we have moved around a fair bit means that it now requires a plane trip to get to.

If I’m willing to get on a plane to go do a thing, I’m also willing to accept that doing that thing is going to knock me flat on my back. If not literally – in the sense that syncope is a pretty prominent symptom of dysautonomia when overheated and dehydrated – at least figuratively.

Last year, before I actually had a name for why I was struggling so much with beer fests (and just about everything else that involved heat or standing for long periods), I mistakenly assumed that just because there would almost certainly be a crash after participating, I might as well give in and accept the worst crash possible. I didn’t really have enough of a handle on my strange new world of fainting in public to conceive that maybe I could minimize the severity of my crash, even if I couldn’t prevent it entirely.

I’ve got a name for the thing now and months of reading both research and real-life sources of how to deal with dysautonomia in general. So, I’m hoping that means that this year I’ll also be a little more prepared to drink with dysautonomia in particular. These are the tips I’ve given to myself to date for how to make the experience of attending a crowded outdoor event that involves dehydration from both the sun and the beer in a different city than the one I live in a little less taxing. If anyone else has any additional suggestions, let me know!

  1. All hydration is not the same. The event will provide water stations. I will need to partake of them, but not only partake of them. It seems that hydration drinks such as Gatorade come in powdered form. When I fill up my trusty water bottle from the water fountains, I will dump a packet of hydration drink powder in it as well.
  2. I will actually follow the recommended guidelines of drinking 3-5 litres, minimum, of water (without or without hydration drink extra) that I am “prescribed” for dysautonomia. Even though that is surprisingly hard when I don’t like the taste of water itself. Then, on top of that medical advice, I will go ahead and drink the “normal” amount of water they recommend alongside beer for non-spoonies as well. Because it can’t hurt. And, I will take my salt pills, even though they don’t taste very good.
  3. I will not be too embarrassed to actually use my spoonie restroom pass. While everyone else is dealing with (shudder) port-a-potties or standing in the line that wraps almost around the building to use the one available set of non port-a-potty women’s restrooms, I will use the resources available to me. I will deal with whatever reaction I get from waving my pass to skip the line and use the accessible stall so that I can manage to go while dizzy without falling in. (For those wondering, no, I have not actually fainted in a restroom – yet! But, standing in that line last year made me fully aware that I easily could someday. There are some things in this world I don’t need to experience once to believe I don’t want to experience twice!)
  4. I will buy the early access pass, and I will show up the moment the doors open. Yes, it feels “weird” to be the “early one” and event staff might try to “help” me. Getting there early means I will still be able to snag one of the very few available tables. And, that the lines for each station will be much shorter for the majority of my time there.
  5. I will also leave earlier. Yes, I could actually stay long enough to try every sample that my punch card entitles me to. And, maybe if I do all of the other things on my list of advice, I will be able to do that. But, I won’t fee like I have ruined the event if we’re not be able to stay for the whole of it.
  6. I will eat enough. I’ve already paid for the ticket, the plane trip and the hotel. It is ridiculous and self-defeating to let the bully-in-my-brain suddenly decide that buying some expensive (but actually quite yummy and made onsite) food is a bridge too far. I will accept that if I felt the event is worth the time and money to go to at all, it is worth the extra money to feel as good as possible when I do. If that means paying onsite food prices, so be it.
  7. I will take my Xantac and Benadryl.** (Okay, I’m cheating here. I actually do this one pretty consistently, and, unlike the rest of these list bullets, I always have. I’m mostly putting this one out here because I’m curious as to why the combination of these two over-the-counter medicines seems to make me significantly less sick when I drink alcohol, even though neither affects alcohol absorption normally. Is it just me, is it a placebo effect, or have I stumbled on a great secret for the ages?)
  8. I will keep my rest area convenient. Yes, the hotels further away are cheaper. But, longer Uber rides when I’m feeling dizzy after drinking will only compound my crash later. I will stay at the hotel nearest to the event. And, I will keep the things I need to recuperate (like more water bottles, snacks in the room fridge and some massively salty fast food pre-ordered on the Internet for delivery right about when I am too out of it to even want to order pizza) set up and ready to go for when I get “home” after the event.
  9. I will bring ThermaCare portable heating pads. Because standing and walking for a long time will inevitably make my coat hanger neck pain worse. I know this. I am capable of planning ahead and wearing one while I still can turn my head.
  10. I will actually listen to my Partner when he says I’m losing steam. I’m notorious for being oblivious to my own limits, so I will trust him to pay attention when I fail to notice how I am actually feeling.

Any other advice for an ADHD spoonie for surviving a large, mostly outdoors event?

**Note from 2020. I didn’t know I also had Ehlers-Danlos Syndrome when I wrote this post originally. I also didn’t know that there is a so-called “triad” of EDS, dysautonomia and mast cell issues that commonly show up together, that mast cell reactions don’t always look like “typical” allergies, or that H2 inhibitors can help. I kind of wonder, knowing all these things now, whether they together explain #7. Three years on, I am the only one I know for whom my secret combination seems to help. However, I know it consistently does aid in my post-drinking recovery, because I’ve forgotten it often enough to become my own control group. Your mileage may vary if you aren’t a zebra.

Need a recap of anything I’m talking about in any post? Check out my Glossary of Terms

5 thoughts on “Messages in a Bottle #16: How to Dilettante with Dysautonomia

  1. “Hell years are a marathon, not a sprint.” I love this. And the message to not feel guilty about taking care of yourself in trying times. I hope you enjoy your craft beer. Like you, I hope things change for the better but like you also, I’m not hideously optimistic.

    Liked by 3 people

  2. Thank you for writing this, I can relate to needing to forcibly insert good days, even though it feels wrong to be doing something “good” at a “bad” time, because I literally won’t survive otherwise (not now, but at times in the past)… I also relate to being “a dissociated puddle on the floor,” lol, that’s an accurate description of me in Jan/Feb 2019.

    Liked by 3 people

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