invisible illness – potsiemouth

Getting Married with POTS Part 2/2

In seemingly no particular order, here go:

Working Out
1. Worked out our entire engagement. Not for looks but so I could stand up during our ceremony (having a good workout regime is helpful in POTS recovery)
Having a Designated Personal Attendant
1. One of my besties who is a literal angel and nurse was instrumental getting me through the day. (yes healthy people have personal attendants as well. Everyone should imo)
2. She made sure I was drinking enough, eating enough, and using my CBD oil on a schedule. Again, she’s a nurse so she was ON IT and all with a smile.
3. She carried a bag with POTS staples like salt pills, nausea meds, and liquid IV.
4. Having someone dedicated to help me was great because expectations were established so I felt comfortable asking her for help when needed.
Dress Selection
1. We got married in September. I picked a dress that was light and airy to avoid overheating.
2. My dress had pockets, which were fabulous and functional.
3. Choose a dress you feel comfortable in.
4. Do not fad diet to squeeze into a dress.
5. No bonus points for wearing a dress that doesn’t fit comfortably.
6. Our health is uncomfortable enough, don’t add to it.
Shoe Selection
1. I wore really pretty lace up ballet flats and switched to the Kate Spade Keds for the reception. 10/10 comfortable the whole time
2. I did have compression socks on retainer if they were necessary
Emergency Chair Behind Altar
1. We hid a chair behind the ceremony backdrop.
2. Made a hand signal with my sister (MOH) so if I got sick she could just quietly get the chair without us making a scene. (I’ve also done this trick as a bridesmaid.)
Know Your Limits (its ok to share them with others)
1. I literally told the pastor the night before that if he didn’t finish within 10 minutes I was walking back down the aisle regardless of where we were in the ceremony LOL homeboy honored that time limit.
2. Most of the people knew my health limits so they were really respectful of talking to me while I was sitting or they’d keep any conversations held while I was standing, short
Explore IVs (check with your dr)
1. Getting an IV is the only thing that helps me feel any relief. (Again, can’t take meds due to adverse reactions.)
2. I looked up a mobile IV company and literally got one on site while getting ready which was a massive help.
3. It can be less expensive to go to IV company’s office (it was the difference of me making it through the day so it was worth it.)
Create Time and Space for Grace
1. We got married at my in law’s place. We had people make us our plates so we went from walking back up the aisle directly into his parent’s room to a little table set up and we got some time to chill by ourselves during cocktail hour.
2. I personally struggle eating when there’s a lot of commotion so I just took the time to be quiet and still (hyperPOTS= overstimulated=food not sitting right)
First Look
1. First looks are great in general but for me and my hyperPOTSie self, reducing suspense was a huge help. Less pressure. (The goal is to try and make your day easy for yourself)
Emotionally Pace
1. This is a huge day regardless of health status.
2. I requested those on my side giving speeches to keep it relatively light. With my adrenaline I can really struggle with big emotions making me more prone to adrenaline attacks which would literally ruin the day for me. (Again, personal preference.)
3. There is a super fine balance between enjoying your day to the fullest and sacrificing your health.
  1. Identify the moments of your day that matter most to try and pace yourself from exciting moment to exciting moment.
    1. Spread out the schedule if you think its too much energy back to back
Sweetheart Table
1. During speeches it was nice to just sit with my husband and not have to factor in anyone else.
2. Having space to ourselves was also great for managing inevitable overstimulation.
Try and Find a Safe Place to Take a Break
1. I snuck away 2-3 times with my personal attendant in tow during the reception to just take a minute to listen to my body’s needs.
Keep Yourself Fed and Hydrated
1. Every bride needs to hear this but you really need to go out of your way sometimes to make sure you are drinking the right amount and putting fuel in the tank
2. Eat smaller portions though as meals divert blood to the digestive system and that can cause some symptoms to come out and play
Go at Your Own Pace
1. This is your day. It is completely ok to take a break at any time.
2. If you need a mobility aid, you can still be a gorgeous bride! (I personally didn’t need mine because I wasn’t walking around all night but did take pics cause representation matters!)
Allow Yourself to Enjoy the Day, You Deserve it!

Photographer (Katelyn Rowan), husband, and personal attendant all on the same page here for my hydration break.

Getting Married with POTS Part:1/2

“Can I even have a wedding day with POTS?”

Absolutely!

This is a question I get pretty regularly. So of course I had to be extra and get back in my wedding dress and take some pics. Absolutely had too (lol jkjk).

First, you have to be in the right mindset.

For most of us, POTS (or insert your chronic illness here) came on suddenly. There is a life before our illness that we think back on often. We had a specific view of how our life would go and then we got sick. Suddenly, everything sucks. Everything is hard. Not just any ol’ human can hang with us. Finding someone who doesn’t just put up with your illness but actively commit to your health journey, is worthy of a true celebration. As exciting as that feeling is, the doubts start coming in. How do I even begin to negotiate everyday life? Let alone a day, a very high stress day. My wedding day. A day that even healthy people can struggle during?

The first thing we have to do is realize our wedding day may look different than how we used to imagine it. It is supposed to be our dream day after all. Not exactly fun to factor in a disability.

I wear contacts/glasses. I go to my optometrist every single year to make sure that my prescription is up to date and working for me. There’s no shame associated with it. It’s very quick. Very wham bam thank you ma’am. The doctor asks, “does one look clearer? or two? One? Or two?” I stress out that I may respond incorrectly despite the fact that there is no right answer. I literally just need to tell her when the lens works best for me. Having the correct vision is crucial to my everyday life so I want to make sure that I’m completely transparent on which lens works best for me. For…clarity, if you will.

Imagine if a friend came to you and told you they lied to their eye doctor because they were embarrassed about the severity of their vision. They wanted to fake better vision for their ego. No one else benefits from this by the way. There isn’t a trophy or a prize for using the wrong prescription. But there they are thinking they’ve won but really they lost. Think of the negative consequences: eye strain, headaches, potential accidents ,etc. You’d probably laugh a little at how absurd that is but then you would likely encourage them to go back to their doctor and get the appropriate prescription.

When you become chronically ill, you need to reevaluate the lens in which you’re viewing your life through. Routinely at that. Your pre illness way of thinking isn’t going to serve you well. We have to constantly take inventory and audit old thinking. Prior to getting sick, I wouldn’t view standing at an altar during a wedding as risky. Why would I? I never had an issue standing up before. However, looking at my wedding day with a new lens, one which accounts for my medical conditions, all of a sudden I had to view standing at the altar differently.

It is 100% ok to acknowledge and mourn our old lenses. Our old prescription for life. Sometimes I have to ask myself, “Is the vision I’m imagining through my old health lenses or my new ones?” Because if it’s through ol’ healthy-Mariah-lenses? Having an emergency chair hidden behind a wall behind the pastor and having a hand signal so if I needed my sister to grab it we could do so seamlessly, is going to seem like a devastating reality. However, viewing that circumstance through the lens of “this is the reality of my health and this is the best option for me” it seems much simpler to realize an emergency chair behind the wall could be empowering instead. Knowing we had the chair and a plan helped put me in a more relaxed state because we planned for my nightmare; passing out in front of a huge audience. Sitting in front of people>passing out in front of people.

Here’s what’s so great though, I almost needed the chair but we never pulled it out. No one even knew it was back there, aside from family and our wedding party. It wasn’t even a big deal at all.

My cousin who got married at her sickest with POTS? Both she and her husband simply sat together on a bench for most of their ceremony. No one was upset. No one thought it was weird. It was THEIR wedding day. Whatever THEY needed to have the best day is what needs to be done.

My MIL and the wedding planner we used were well versed in all the minutiae of a wedding day so we were able to view and plan the day around potential health needs. It was incredibly reassuring to have everyone on the same page. Looking back it seemed very manageable.

Part 2 of this post will be much more to the point (literal bullet points) the little backup plans throughout the day that allowed us to enjoy our day even if my health fluctuated. I just know it was helpful for me to have access to this mindset because it can be really easy to get overwhelmed and feel discouraged while planning because the deeper you dive into your planning, you’ll realize that there are traditional aspects of the day that may not work for you. That’s a tough pill to swallow. You may need to take it daily. Regardless, it is your special day. You deserve the most wonderful day. Give yourself grace. Don’t be so absolute in your plans that you self sabotage the whole day over something that could be addressed/avoided by simply giving yourself grace and adapting.

Part Two:Getting Married with POTS Part:2/2

Photographer: https://www.aisling.design/

The Good Days

We are the Greek myth of Daedalus and Icarus of chronic illness. Joy is my sun. Soaring too close to the sunny rays of joy is always my undoing.

“Managed joy” those are the words I landed on with my therapist.

My top 3 day of my life happened last year and the prolonged excitement kept me in bed for the better part of the next two months.

My husband has grown accustomed to monitoring it as well, which helps but can be tough to accept. He usually prompts me to take health inventory when I’m doing too much. We are the Greek myth of Daedalus and Icarus of chronic illness. Joy is my sun. Soaring too close to the sunny rays of joy is always my undoing. Sometimes I get so caught up in the happy, nothing else matters. In those moments I have to ask myself the hard questions, “is this worth a potential flare? Being in bed the rest of the week?”

I’ve said it once and I’ll say it again, it is incredibly hard for my personality and disability to coexist. With my POTS and EDS, I have to limit physical and social situations or risk burnout and knock my recovery off its axis.

Four years later and it is still so hard for me to accept that I don’t get to be the woman who goes on runs after a long day of work. I can’t have back to back social/physical happenings these days without large consequences. Now I can get an IV and prepare for these events (such as these photos you see here.) Nothing is without thought anymore. You know when you look down at the most used buttons on a remote? How faded they are. You didn’t notice the way it faded. It was done incrementally. One day you look down and you wonder “when did the symbol on this button wear off?” When was the last day I got to stand up without adrenaline and heart pounding? Even now it hurts to think that there was a final day around this time four years ago that I went about my day healthy. My last run. My last functioning day at work. Last time I left the house without needing a walker in my car. All these last times and I had no idea. When did all this become second nature?

These realizations are deeply emotional and can verge on painful. The memories of life before the chronic illness overtook are inviting and warm. They’re very hospitable, at first. They have cute clothes and fun nights in a big city. But if you stay in them you can get stuck. You can’t grow when you’re stuck. So you must move through it. Similar to when Frodo puts on The Ring in LOTR. He wears it to escape but the longer he wears the ring, the more danger he is in. It drains him. Burdensome. It isn’t until he takes off the ring and continues onward that he can really be safe.

I have had to learn through trial and error what amount of social/physical I can handle at given times. I have had to carefully set my health boundaries by way of being honest with myself and others. I can be a people pleaser and let me tell you, chronic illness is the best way to get over that. I have set expectations with those in my circle. Everyone is accommodating and extends grace (if they didn’t we wouldn’t be making plans anywho because that isn’t something I’d waste precious energy on.) Some of my friends have chronic illnesses as well and I truly treasure when one of us has to cancel due to health and the other supports and understands. No added stress. Just love and support. Nonetheless, monitoring the inconsistent physical and emotional energy can be a lot. But the days when all the boundaries and care pays off? When you get to have a good day?!

Well darling, we’re going to put on a fabulous outfit and go enjoy your day to the fullest… without compromising the next one, of course. We’re going to add in a health recovery buffer day (or 3) so in the event we have too much fun, it’s already been managed. One thing is for sure, we are still going to live our best life.

What do you like doing on your good days?

Photography by Alexa Lei

Self Storage

I came to the realization that I have been storing my old self in that storage unit like Vodlemort stored a part of his soul in Harry Potter. If all my old life is still in this unit, I can still go back to that life. It isn’t over. It.can’t.be.over.

When I first got sick in 2018, I bought a mini storage unit. We had no idea where life was going to take me at that point. Part of me was convinced I’d stay with my mom for two months, get better (LOL), find medicine that helped and then I’d go right back to my career and move in somewhere. Two months came and went. Two years came and went. My bed. My clothes. My belongings. My life. All quaintly tucked away in a little 5×10 unit.

I left in such a rush, my lovely sister and brother in law moved all my belongings into the unit for me. I had a general inventory of what was in there but over time you forget.

Everytime I would visit my sister, health permitting, she would take me to the unit so I could sort through my clothes and belongings to see if we could Goodwill anything. It was emotionally taxing. Especially my prized work wardrobe. It was everything to me. If I could just wear them again, everything would be fine. Getting rid of them felt too final. Everytime we went, I kept things even if it didn’t make sense because I was just sure I would resume my old life at any moment. My sister was always on the edge of pulling an Elsa and yelling, “LET IT GO”. It took me a while to come to grips with how debilitatingly sick I was/am. When you’re watching your new career pass you by. When you’ve paid off the student loans of a college degree you can’t even come close to using right now. When you’re realizing you can’t casually go on a run. When it feels like everything you’ve done to get where you got was all for nothing, you’ll hold on to anything. For me it was bags of beautiful horcrux skirts.

(I’ve got a lil pile in my sister’s garage now and we are one trip and a large suitcase away from having the transferable parts of my life on a plane.)

You know how when you’re driving and you miss a turn and the navigation system immediately begins recalculating? It searches for the best way to get you back on your original path. There are instances though where maybe the traffic or some circumstance won’t permit the U- turn your navigation suggests. At some point your navigation is going to throw in the towel and say, “rerouting”. It then proceeds to find your new path.

Let me tell you though, from experience? Much easier to reroute your gps than your life.

Most chronically ill people face that decision at one point in their health journey. Sometimes your “how do I get back to being healthy?” path turns into a “how do we live a meaningful life with this?”

I’m trying to have both of those paths coexist right now. Prayerfully hoping and working toward healing but also imagining life with POTS in varying degrees.You know what though? I have the ultimate safety net of a great God and I have the most amazing support anyone could ever hope to have. I know no matter how this pans out, I will be loved. Maybe, just maybe, letting go of yourself (no matter how fabulous) is how you find your new self. Dare I say it, your best self.

I am trying my best to make a space for this new Mariah. No matter what that entails.

Where are you metaphorically or literally storing yourself that’s preventing you from moving forward?

Photography : Alexandrea Leigh

My lovely dress by : Madeline Marie

Casapalooza.

You are only seeing me at my best. If it were anything less, you wouldn’t be seeing me.

Remember when you would get sidelined with an illness when you were in school? Whether it was the flu, strep, really anything that resulted in you being home sick for more than two days. It was common knowledge that staying home sucked because you had to do all the annoying makeup work. No one envied you staying home sick did they?

What’s interesting to me is the reactions to my saying, “I’m chronically ill so I can’t work per se but my job is recovering my health at this time.” It is significantly more grueling than having a virus and yet, people act like I’m on some kind of vacation. There is no malintent behind the comment. We just don’t live in a society that discusses the true severity and burden of chronic illness. If you know someone who has chronic illness, the chances are more likely that the individual understands you aren’t living your best life at a resort. If someone doesn’t have anyone ill in their life, you can tell because they approach it with the nonchalance of picking lint off a sweater.

My favorite is getting congratulated. We live in an area of SoCal where staying hone means you’ve “made it”.

I think for my case specifically is that not only is my condition invisible (to some degree, EDS people see me hold anything and ask if I have EDS) but I love a good outfit and a red lip. I’ve perfected minimal effort, maximum impact. Furthermore, whether I’m having an outing or making a silly craft video, I’m putting in more effort than those guys in Strong Man competitions who look like they’re about to lift the poop right out of themselves due to exertion. I went and got real great at faking my level of health but that often gets me in more trouble than not because people make assumptions. You also have to realize if I don’t have my walker and my health/occupation doesn’t come up, I don’t just randomly sprinkle in that I have POTS. Every once in a while, people who meet me on a good health day will ask if I want to do a not so ADA compliant outing. That’s when the awkward part kicks in. Like, “funny story…I can’t stand for long and walking more than 100 yards at a time is a bit risky…so it’s a soft pass for me…”

When the chronically ill have a good day, we are like a dog getting a bunch of new toys dumped out around them. WHAT TO DO WITH ALL THIS OPPORTUNITY?! A good day is fleeting so you have to maximize them sometimes. So if I’m out or crafting, that shows I’m having a good day. I want to make the best of that day because I have no idea when I’ll get another one. My being in public or doing one of my videos is the real life version of a instagram page as it pertains to a highlight reel. You are only seeing me at my best. If it were anything less, you wouldn’t be seeing me. I know many other chronically ill people who understand that all too well.

I was so excited about taking these pictures because based off the responses I get to saying I’m medically unable to work, this is what I think people assume it is like for me to be home. I’m not great at being a housewife in OC. 98% of my time is very unglamorous. My hair? Up so I can lay down for hours at a time and not worry about tangling it. Makeup? Lotion. Wardrobe? I wear my grandma’s old button up cause it’s so comfy. I can also easily roll the sleeves up or down depending on my body temperature needs. I usually wear compression leggings or compression socks. Sometimes both. She is beauty. She is grace. She stands up slow, just in case.

Expectation of staying home sick vs Reality

I’m really blessed that my husband’s career removes some of the financial stresses of having a chronically ill spouse but most aren’t in that position. Medical bills can be extremely out of hand and out of pocket. When you are too sick to work and have the added stress of how you’ll be making ends meet and then some random human says your life must be fun because you don’t work? Highly tone deaf. I remember being prescribed one of the more serious drugs used to treat some symptoms of POTS and it was about $300 IF you have great insurance and up to $1,350 for those who don’t. Do you understand how absurd that is? Medication more expensive than some people’s rent or mortgages?! You also have to factor in the doctor visits and/or hospital stays. Medical supplies. It adds up.

This is the face I’d like to make when people act like being so sick you can’t work is amazing.

Long story kind of short, do not project your lazy desire to not work on the chronically ill. If you’re trying to keep the tone positive and light, there are other routes to take. We work 24/7. We don’t get to take PTO. We do not have holidays off. We can’t take sick days. We didn’t choose to get sick. We don’t choose to stay home cause we love Netflix. We physically aren’t able (that’s why we call them DISablities). If someone ever expresses that they aren’t able to work due to medical conditions, hear them. You can commend their strength to go through what they are going through. You can say, “oh that must be really tough” and then wish them well. A simple acknowledging nod. There are 99 ways to respond, “that must be nice” aint one.

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.”

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.

Be Your Own Representation

“Yes, I have a walker but I’m still going to sparkle”

I found myself googling things and coming up with nothing.

I could hardly find informative POTS blogs, forget having them not be completely discouraging with a whiny voice. So I had to make one.

Do you know how hard it is is to find people my age using walkers? I wanted to find fun pictures with walkers and couldn’t find any and thought, I’ll be the one who posts fun pictures of walkers.

No one makes walkers fun. I wanted to look at ways to decorate walkers and could only find decorations for kids (got pink, bows, etc) so I was like well nonsense, I’ll make the walker I want to see.

I didn’t want to use a walker because I felt like no one else with POTS was and then I realized I need a walker. I’m the type of POTS patient who needs help.

Growing up not a lot of people looked like me. No one had my hair. My sister doesn’t even have my hair. She’s got these loose waist length curls whereas I have tight curls that graze my shoulder on a good day.

Sophomore year of college I had this embarrassingly obvious revelation. I’ve modeled almost my whole life. I’ve been the representation. I am the representation. So I had an empowering moment and I become unapologetic about my hair and from that found a whole bunch of people who connected with me and I found a whole community of people who had my hair and it was a fun time.

Why should my illness be any different?

I’ve been essentially bedridden for nearly 10 months. For some reason, I didn’t feel like I had the “ok” to use any form of help. Like I wasn’t that sick. In airports and hospitals, I used a wheelchair. But I wasn’t getting healed when I left these places. I still needed help, yet I never acted on it.

After a 9 minute trip to Target with my mom, where I bent myself over the handles of a cart and used it as a walker, got progressively worse and ended the Target trip with a panicked hobble to the car, putting my feet on the dash in the car, seat laid back, and guzzling down water to get the bitter taste of the Dramamine I had just bought.

For whatever reason, that’s when I decided I was sick enough. The thing about chronic illness is that you become so accustomed to the chronic part, that you forget you had a life before. When you have POTS, it takes 3 times the energy to stand (on a good day). When that is your every day, you forget that standing isn’t an accomplishment to other people. Most people just stand up without even thinking about it! Wild. I forgot. I forgot walking is supposed to be simple.

So I got a walker.

Now I’ve got a snazzy walker and it’s fantastic. I spent well over 6 hours (over the period of a week and a half) sanding, priming, and painting my walker. Pimping out my walker was oddly cathartic. Not only was it something fun to do but it was a visual representation of me embracing where my health was but still being ok with it. Yes, I have a walker but I’m still going to sparkle.

The first steps with my walker were some of the most liberating moments in my life. It’s still hard. I still use the seat to rest every couple of minutes depending on where I am. My blood still pools in my feet when I’m up too long and causes intense burning and swelling, even still its independence.

I’ve struggled with multiple illnesses throughout my life so yes, yes I’ve learned that I’ll get through it. That parts of it are temporary. That I can’t go to all the events and I can’t make all the trips, I can’t make plans far in advance, I can’t be spontaneous but I also can’t do something without a heads up to physically prep. I also know that when you’re sick, you appreciate life so much more. Life becomes about quality, not quantity. Something as simple as a 15-minute car ride with the windows down going nowhere in particular. I don’t always get to go out with my friends but when I do I savor it. My best friend was in town this weekend so I got an IV and we took pictures, went to dinner, and got a mani/pedi over a single weekend and I was able to savor it the entire time. When you become sick, the little moments people usually take for granted become the greatest gifts. So although most will say being sick feels like they can’t live anymore, I would also argue that you feel more alive. Even if it is only for a few moments at a time.

The Not-so-Super Superpower

“Oh I’ll kill him”

Remember when people would ask you what superpower you would choose? I always chose invisibility. You could sneak on planes. You could be in a room and listen without being noticed. You could appear to teleport. You could give the illusion of telekinesis. I felt like it was the most versatile option. The loophole of superpowers if you will because you could do a bit of each technically. But now, here I find myself with a sense of invisibility. It isn’t as foolproof as I once thought. I wish I could pull a Harry Potter and uncloak my illness but I can’t. The closest I can come is fainting or allowing blood to pool in my legs causing them to turn ugly colors with bulging veins even The Rock’s biceps would aspire to have. Not super into that idea. Doesn’t really match my *aesthetic*. So hard pass on the reveals.

If I had a dollar for everytime someone said, “You don’t look sick” I wouldn’t feel nearly as bad that I can’t work right now. Coming 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…”

I am thankful you can’t physically see my illness but not seeing it adds a pressure on top of being ill. At the end of the day, I’m 5’11 with an athletic build. I spent almost all of my life modeling so no one is looking at me and thinking, “that girl can’t walk 10 minutes straight” or “I bet if the waiter drops something she’ll begin crying and fainting”. It’s a catch 22. I don’t want to have to explain my behaviors/survival techniques but I am also happy people don’t give me pity stares.

A big mental hurdle with chronic and invisible illnesses is that you don’t have the time or energy to care what your situation looks like to people. Like me sitting on a bench while having my mom wait in lines or having her carry the heavy things because I can’t strain. It’s those moments while pre-boarding because you’re on the disability list and everyone looking you up and down looking at you like you are a fraud with no respect for the old woman behind you. I always want to turn around and say, “Agnes can flipping stand. She’s just old. If I go behind her slower-than-any-snail-I’ve-ever-owned self, I’ll pass out and delay this flight and it will be an event. So I’m boarding first.” I tried the other way and it DID NOT go well. The lesson here is you never let your pride win and wave off your wheelchair pusher and tell them you can make it on the plane solo. You gotta do what you gotta do but there are tough moments/situations when you’re a healthy looking 24-year-old with an invisible illness.

Another comment I get is from people with the greatest of intentions is when they tell me they are happy I’m out and about because they are worried I’m going to get depressed. Here’s the reality, I have zero control once outside my room. And it is terrifying.

The other day my mom and I had done my swim for the day and we ran into a woman we had done a bible study with years before. She had no idea I was sick. So she asked how to specifically pray for me and asked what I was going through. So while telling her what’s going on with my system, I’m specifically telling her how I struggle with constant high adrenaline, palpitations and high heartbeat (to name a few). She begins praying and not 10 seconds later a loud noise startled me. I opened my eyes and looked over, someone let the air out of something about 30 yards away and it devastated my system. The thing about when my body just goes off is that my thoughts remain the same. So while I have an attack it’s like my thoughts and logic are like “we’ll wait ’til you’re done, crazy” or “oh here we go, this will be a good one” These are actual thoughts I have had while sobbing and getting to a safe position to prevent fainting. Having a sarcastic mind during all of this is a blessing and a curse.

hpbody and mind — Ron is my Autonomic Nervous System. Harry is my thoughts.

I was able to get out an annoyed, “Oh I’ll kill him” (no idea who the guy is) before I began sobbing uncontrollably and then had to lay down because my heart rate went up by more than 30 bpm and my blood pressure plummeted. My mom knew right away I heard a sound so she was communicating to the woman who, at this point, was very confused and didn’t even hear the noise. This poor woman who was just made aware of my condition is now SEEING it. My thoughts came through with a, “well I guess she freaking knows what’s up now. Well done.” My body took about 15 minutes to somewhat recover. On top of it all, I cried my contact out which was a whole other issue….. It took an additional 10 minutes for my heart to get below 100. Something people do not realize about HyperPOTS, is you’re essentially on the verge of an attack at all times. It is one of the most debilitating and constricting symptoms. The moment I step into public, anything (literally the sound of air) can cause an attack and I have no control over it. There is no system override.

That’s just where my body is right now.

Every time I leave my room, I’m at risk of having an attack. This is all on top of my normal and prevalent symptoms, so not ideal.

There is no set medication for someone who has POTS. There are just families of drugs that we try. Earlier this week and toward the end of last week we have been corresponding with my Autonomic Specialist but it turns out….due to my latest beta blocker reaction, combined with my lab results, I am no longer a candidate for any of the medications for those with POTS. Turns out my resting heart rate and blood pressure are too low naturally for any of the medications doctors prescribe for POTS.

Translation: Buckle Up Buttercup.

Bed Riding

For future reference, we’ve been told anything under 55 is when you go to the ER….

Happy Friday,

Time for a general update:

A lot of people have been asking about the blog and when I’m going to post but even for me, it’s hard to find material when you spend 23 hours a day in a dark room. Shocking, I know. My energy levels were also very low to the point that when my mom brought my meals up, simply making eye contact felt exhausting. So writing was not on my to-do list. Making it through my day was all that was on my to-do list tbh.

When we tried to leave Mayo we had every travel issue in the book thrown at us. We spent 27 hours traveling from Rochester, MN to Myrtle Beach, SC. Everything that could go wrong traveling, happened. As some of you know, the 7th plane delay ended up occurring after we got on the plane that had no air conditioning and we had to deplane due to it being over 90 degrees outside. The sweltering heat almost caused me to pass out inside the plane and none of this is made easier by needing a wheelchair. We eventually got to Myrtle Beach.

We got here Sunday, May 13th. I began my beta blocker Propanolol that evening. I noticed my body temperature changes were not so extreme. It took a bit longer for my heart to skyrocket upon moving. I struggled for the first time in my life to hit 160 bpm while working out (albeit I was sitting down on a recumbent bike….) For potsies, the bed is the worst place to be which makes everything really difficult because most of us have chronic fatigue. We also have blood pooling in our legs. For me, it gets to the point where my skin itches and my ankles are so swollen I literally can’t even bend them. Since May 13th, I have been in bed about 90% of the time. 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.

My “normal” sleep schedule has been about 6 a.m. to 12 p.m. It has been an absolute nightmare and my adrenaline is one of the causes of insomnia and is also made worse by it, so not ideal. One night I took 2 Benadryl and 2 Aleve PM and I was still up until 7 a.m. It has been agony. I missed the feeling of being sleepy tired which is completely different from feeling sick exhausted all the time, believe it or not. Wednesday we got some quality CBD products so I have slept well since Wednesday night. Which is a big deal!

So Tuesday was the first day of not taking my medication. My resting heart rate has been steadily rising which is exactly what we wanted. I can be somewhat mobile again. Going from my bed to the bathroom now warrants a change of over a 100 bpm within 30 seconds which is exhausting as always….so we are back to my normal sick self. Who knew I’d be grateful?

I got a recumbent bike from Amazon that I do my little workouts on. The hope is to recondition and to help sync up my system. Depending on the day, I can do 10 minutes and be finished or I can do 10 minutes at a time, recover and do a total of 20 or 30 minutes if I’m feeling wild. That’s a big day though. What the doctors did not seem to consider, is that I have to do these workouts AND THEN shower. It’s so much energy right now. I use a super age appropriate shower stool. It comes in a striking Millennial Grey for those of you looking to purchase one (I lied, that isn’t a thing). To be fair, shaving is a lot easier…Anywho, so basically, my existence has become trying to workout and shower. For example, I can’t workout, shower, and do my hair the same day. Below is the Spoon Theory. This has become the easiest way for people with chronic illnesses to explain to regular folk what our days are like. Go through your day and see how many spoons you use!!

	Getting Married with… on Getting Married with POTS Part…
	potsiemouth on Siete de Mayo
	cordero barkley on Siete de Mayo
	Travina on The Good Days
	kimberlystevens9093 on The Good Days

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