Month: August 2020

Fairy Fail

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

Photo by Alexandrea Brewer

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.)

Photo by Alexandrea Brewer

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.

Photo by Alexandrea Brewer

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.

Pardon My French

“My body handles stress about as well as the ants in “Bug’s Life” handled the grasshoppers coming early for their harvest.”

One of the top questions I’ve been asking myself since becoming ill is, “how am I going to be successful?” 

I had a job that set me up for a lot of long term success. No cap on potential. I remember smiling out loud in the car on my way to the office on my short commute playing my pump up playlist. There was never traffic because we got up earlier than everyone else. I loved that. Starting my day in a fabulous outfit. Driving before the sun was out. Everyone holding each other to their personal and professional goals. Success was explicitly defined. I enjoyed how clear cut it was. It simplified life for me and was really empowering.

Based on what the doctors have said about my case, I shouldn’t be going for high stress jobs when I recover. I have a love hate relationship with stress. It can be so very thrilling. Stress can also be detrimental on the body though. My body no longer adapts to stress. Turns out things I didn’t think had any stress to them, have stress to them. My body handles stress about as well as the ants in “Bug’s Life” handled the grasshoppers coming early for their harvest. “They come. They eat. They leave.”Duck and cover. When I tell you I had to prep days in advance to make sure I was ready to get behind the wheel? “Sweet mother it isn’t even a big deal!”- things I tell my body who thinks that it is indeed, a big deal.

I’m trying to see where I will fit in a post-POTS or minimal POTS world. Something to work towards. It’s a bit tricky to feel and/or stay empowered thinking about the future and returning to a normal functioning life when you can’t wake up before or go into a crying fit because the dog randomly barked.

During one of the many conversations I’ve had with my husband about this topic he said, “well maybe we are going to need to redefine what it means for you to feel successful.” LIKE WHAT DOES THAT EVEN MEAN, BRO?! Since the pandemic though, I think more and more people, able bodied and all are grappling with this very question.

But that’s the part. That’s the struggle.  Most individuals I’ve spoken with who are chronically ill actively feel this or have felt this, depending on where they are in their journey. We live in a highly competitive society. So what happens when you lose your competitive edge? Your literal ability. Ability to drive, think sharply, meet physical demands, handle stress, stay alert, multitask, etc.

I’ve always had my own thing going. I electively worked my butt off in the summers starting at 13 years old. Not being able to work just isn’t my thing. I can only control what I can control though. I can manage my symptoms but only to a point. My nervous systems aren’t going to play by the rules just cause I ask them nicely. This is a process that has taken time and will continue to take time. I can’t even begin to explain how much acceptance goes into that.

The loss of various capabilities is not a psychological cakewalk. Like, at all. In this respect of chronic illness, it’s easy to feel small. Like you’re insignificant. Don’t add value to anything. That you’re just a parasite to people in your life. You’re not any of those things. (I’ve said it once and I’ll say it again and again and again because I know it’s a message that needs to be repeated: don’t allow people access to your life that make you feel any of these things (chronic ill or healthy).) You(and pardon my French but I can’t stress this enough) are a Badass. 

People have zero idea what we do on a daily basis to get through the day. Trouble standing up. Nausea. Blood pooling painfully in the feet. Mandatory fluids. The pills. The chronic fatigue. The brain fog that makes you seem like someone who would quickly fail on Are You Smarter than a Fifth Grader. The list goes on and on. And yet, you keep making it through the day. Physically and emotionally. That is successful. We are dealt some rough cards and daily bluff our way through the game. Sometimes so convincingly no one calls the bluff and we win the hand. Think how annoying the people who make you feel small act when they get a cold. You think they could handle your day to day? Puuuhlease. 

I haven’t defined what success is going to mean to me moving forward. But I can tell you one thing though for sure, in this field, I am a success. You’re a success. And we? We are badasses.

Golden Linings

“I was as shook as a 1999 audience member watching Bruce Willis realize he is indeed one of the dead people, a young Haley Joel Osment said he could see.”

  • Photos by Alexandrea Brewer

Well, it’s been a minute. Almost two years, actually. Wouldn’t you know it, I am still sick. A lot has happened. I still need to go over simple tricks I’ve learned, food and drink, travel tips (not relevant right now though I suppose), and all the other jazz that comes with having a dysfunctional autonomic nervous system. This quarantine has been oddly nice as someone who has been relatively homebound for two years and some change. “I’m not missing out anymore.” That’s what I told my husband about two weeks into April.  The world has slowed. I no longer spend my week trying to prep for a weekend to hangout with someone or go out on a date with my husband. People have become more empathetic to what my reality has actually been without even trying. No one tells me I’m lucky to stay at home, as of late. Am I grateful I have been blessed with an amazing husband who is extremely understanding and has a career that supports us while I work on getting better? Absolutely. But let me tell you I’d take a 7:00 am start to a long work day than this any day. Everyday.

I’m feeling confident that I will never have some healthy human tell me I “have it made” after this pandemic is over. I’m selfishly so delighted about that. Netflix isn’t that great. Also hearing that sentiment the last 2.5 years gets super super old.  A lot of us in the chronic illness community have smirked at least once during this pandemic while listening to someone say they are bored out of their mind. Not because it’s fun to watch people suffer. It’s just extraordinarily validating. Like “oh is this boring? I had *no* idea. Most anyone who is chronically ill has had someone doubt the severity of what they are living with. Whether it be because we don’t look as sick as we are, maybe we had, heaven forbid, a day we felt human and did something fun, maybe they just caught us at quite literally a good hour. Whatever the case may be, we’ve all had that one person (sometimes more) that’s an absolute thorn to the side. People that decide to think we aren’t being honest. Like brooo, who in their right mind would relish sitting at home all day, alone, not driving, not getting to have normal social situations for YEARS???? If you’re wondering if maybe you’re the thorn in somebody’s chronically ill side, I suggest you check yourself. I mean what are you gaining?  Weirdo (this is the nicest term for this…I thought of several others.)

Anywho.

Truly though, it’s been refreshing. Have you ever seen those movies where the character is really fast? They’ll shoot the scene in ultra slow mo and the fast character seems to move at a normal pace while everyone else in the scene is moving at a snail’s pace. The most recent movie I’ve seen do this is Sonic the Hedgehog. I feel like that. The world kind of has to pause in order for someone with a chronic illness to seem like they’re moving at a casual pace. It’s been the golden lining of it all. I can focus strictly on healing. Not trying to keep up with healthy people. Feeling like I am in my little time bubble has brought down some obstacles I didn’t even perceive as having an impact on my recovery.  The thing I suck at the most illness wise is extending myself grace. I want to get better and I want to get better now. If you were to play “would you rather” with a chronically ill person you’d learn this truth: we would rather go too hard and negatively impact our health to prove we are trying our best than to play it safe and risk people perceiving us as a lazy quitter who likes being sick. 

I over do it a lot. It isn’t intentional. It’s just so incredibly hard to moderate health in those times. If I get a few hours of health AND energy, oh you better believe I’m going to use it. Maybe go for a swim, clean the house while blasting music, or very foolishly taking the dog on a brisk walk for 0.6 miles… that’s a whole other blog post though.

I’m not lazy but I think I am lazy sometimes instead of acknowledging it’s a result of a physical block not mental. It’s honestly an easier thought to process. Would you rather choose not to vacuum or be physically unable to vacuum? It’s more fun when you have the autonomy to choose, isn’t it. So sometimes you’ve just got to pretend. You may ask, “Is that considered denial, Mariah?”. To which I’d say, “well it isn’t this Mississippi is it?” (That’s a river joke. Please don’t leave). My bare minimum isn’t a healthy person’s bare minimum. My physical productivity is not even close to a healthy person’s. It drives me NUTS. I have been sick for so long I sometimes forget my normal isn’t normal.  I had a woman come for an hour to help clean and when I was telling her what I needed help doing, I told her it may be a three hour job. She finished in 45 minutes (with immaculate care btw). She said, “is this it? That was all you needed?” I was like “mmmm scuse? How are you even finished right now?!?!” I forgot that doing laundry, vacuuming, and mopping the floors isn’t meant to last all day. Healthy people, DO YOU GUYS UNDERSTAND YOU HAVE SUPERHERO SPEED? It takes me all day. Lemme tell you what, I was shook with her productivity. I was as shook as a 1999 audience member watching Bruce Willis realize he is indeed one of the dead people, a young Haley Joel Osment said he could see. 

Since no one else has been extraordinarily productive the last few months (cause pandemic reasons, you know?) I can extend myself some guilt free grace. I can work out during the week without worrying I’ll be too worn out to go hang out with people on the weekends. Boom, grace. I can listen to how exhausted my body is and let it sleep when it needs to sleep because guess what? Everyone has a messed up schedule now. Boom, grace.  I don’t feel as bad about my driving capabilities because there is literally nowhere to go. BOOM, GRACE! 

I’ll be forever grateful for the mental shift God gave me during quarantine.

I’ve seen a lot of able bodied people struggling with feeling like they haven’t accomplished anything during this pandemic. It’s ok. Even if you only get through this pandemic, you’ve accomplished something.  It’s ok if, despite his bullying, the Duolingo owl hasn’t broken you down into learning a new language.  It’s ok if you’ve found it hard to be existing right now. It’s truly ok. It’s normal. Our school system didn’t teach us about taxes or how to thrive in pandemics but we’ve all got mitochondrial functions down. 

Whether you’re sick or healthy, pandemic or no pandemic, extend yourself some grace and find your golden lining in your situation.