We are a generation raised on fairy tales. When I thought about my future. It was rosy. It was motivating. Limitless. We think of the different kingdoms we’ll travel to. Our dream careers. Who our prince or princess will be. The wardrobe is of course very important. My ideal fairytale version of life was very Shonda Rhimes female lead (minus the infidelity). I was excited to have found the challenging career. I was curating the work wardrobe. Life was happening. We are raised on fairy tales that have quick conflict resolution. No one tells you that the dragons, evil stepmothers, and crazy octopus witches aren’t always easy to spot. That sometimes they are masquerading as chronic illness. I was living my fairy-tale story line. And then I wasn’t. My evil stepmother is POTS. Limiting what I can do and where I can go. My carriage is a walker (rollator). My fairy godmother is made of IVs and salt. Cloaked in 175 mg of Metoprolol. But you know how the story goes, the magic powers always wear off come morning.
When I started feeling my power draining in the fall of 2017, I didn’t even register it as a side quest potential. Turns out it’s a bit bigger than a side quest. Little did I know, I was walking through the entrance of the labyrinth of chronic illness. A labyrinth bewitched with thick fog that makes it hard to think through basic functions. Gravity hits harder here. My standing upright powers diminished. After a while, the floor feels like lava as the blood is pulled to the feet with no way out. A simple change in the wind causes adrenaline induced paranoia. Not being able to discern what is danger and what isn’t. (Nothing says a distorted sense of reality quite like dropping to the floor and crying because someone set a dish down too loudly.)
Once you’ve been in the labyrinth of chronic illness long enough, you learn some of its tricks of course (we love some accidental word play.) You start to know where the villains’ evil sidekicks are hiding. You can avoid some altogether and the ones you can’t avoid, at least you know how to beat them now. For instance, sprinkling some Liquid IV powder into water creates the ultimate hydration potion for a little energy boost. Using a walker acts like a bridge to get you over the lava. You can still feel the heat pooling in your feet but not debilitatingly so. Hot dogs and Digiorno pizza boost powers as well. That one is obvious though, is it not?
One of the best things you can do sometimes is to be still and listen. To feel the walls and remember they are just made of stone and nothing more. Focusing on one section of the labyrinth at a time instead of getting caught up in its vastness, is wildly helpful.
Here’s a word of caution: vines cover the walls of labyrinths. You need to learn which vines have thorns and which ones don’t. If you want to reveal people’s thorns, get sick. Their negativity and/or disbelief of your illness will do nothing other than try and grab hold of you and drag you down. It’s ok to whip out your sword and whack ‘em so they no longer have a hold. This journey is winding enough, long enough, and tough enough, without buttholes giving their two cents.
The silver lining is that the Author of my fairytale wrote a prince charming early on in my story so I didn’t have to find him at a ball whilst pumped full of saline. Cause man on man do you need a sidekick of some sort because it’s a big quest to go it alone. Now if you can get a fellowship going, you’ll be as golden as a golden goose. I’ve been blessed with a fellowship which is not something I take for granted. Frodo wouldn’t have made it off that first road in the Shire without Sam. There are no bonus points for setting out on this journey alone. Seek all the help. Physically, emotionally, mentally, and spiritually.
I’ll be honest though, I thought I’d be through this particular labyrinth by now. I guess it isn’t really a labyrinth if you know the way out and how long it will take. This is no seasonal corn maze made by the local farmer. I suppose the Author of my fairy tale is really going for the bulk of my character development in this chapter. So I’m just going to have to keep trusting in the progress I’ve made and the process it’s going to take to the exit of this thing.
When I think of my future, it is still rosy, it is still motivating, and it is still limitless. You should as well. When you’re chronically ill it can feel like you’ve failed some part of life. Like your entire fairy tale is getting derailed. The storyline may be changing, yes, but that’s all. A change. Not an ending. Think of how boring Snow White and Cinderella would be without their villains and conflicts. This is simply adding some spice to your fairy tale. I really believe I’ll get out of this sooner than later. That I’ll get back to the super fun chapters of my fairy tale where my powers return and I’m driving, working, walking, running, etc. Time will…. tale.
oming in at a close second is, “are you better?” Although it comes from the kindest of places, I am chronically ill. The general theme is that I will still be sick….chronically if you will…even if you wait a full day or a week to ask. “How is today going?” or “how are you feeling?” is significantly better. The last thing I want to do is be like, “Ummm yeah no, shocking, still CHRONICALLY sick looks like it’ll be that way for the foreseeable future. I don’t have the flu. This is a thing. Thanks for asking…”
We chalked it up to change of environment, exhaustion from traveling and being at Mayo all week. Then more recently, I started noticing more and more of my heart recordings were showing blue which means less than 60 bpm. Even at 50, I thought “meh, I’m fine”. It was the 34 bpm recording throughout the day that got me slightly concerned. For future reference, we’ve been told anything under 55 is when you go to the ER…. you live and you learn and I’m fine. After discussing with my doctor from Mayo, we decided to stop the beta blockers altogether. It is bittersweet because although I feel like my regular sick self instead of barely alive, beta blockers are the main treatment for POTS.
potsiemouth 