Tag: hyperpots

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 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.

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.

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.

Be Your Own Representation

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

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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”

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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. Cnicholas-cage-you-dont-sayoming 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.

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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.

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The Fallout

That’s the reality of POTS. There are aspects of this that you can’t make pretty. You can’t dress up a breakdown. You can’t laugh off an attack like that.

The reality of HyperPOTS

At a glance, this illness seems like a college girl’s dream. Always in leggings (compression), watching lots of  Netflix, eating bad salty food, and not working (because you literally can’t handle any form of stress) Toward the end of this post is the reality. I try hard to be upbeat and positive because it helps me get through it, but days like yesterday, those are the days that you can’t ignore.

Yesterday was a bad day. Yesterday was the much-anticipated fallout of all my positivity and energy I spent getting through this week. I knew I was overdue. It’s the most I’ve walked and talked since Christmas time. I woke up at 6 and I knew. I could feel it all like a snake poised to strike. I went to the continental breakfast not caring about fluffing my hair, putting in glasses/contacts, no makeup just schlepped my way with my mom. One half-eaten waffle later we went back to the room. In the darkest room we were able to make with large pillows and a tall chair blacking out the window I laid quietly. The left side of my chest hurt. I laid there clutching it quietly. My blood pressure cuff automatically went off every ten minutes and it created a throbbing pain and with the prolonged and constant measurements, it began inducing palpitations. My skin was raw and red where the four electrodes clung to me. I could already tell the lower two on my ribs would bleed when I removed them.

My mood was bad. It’s rare for me. Sad every once in a while but never really bad. I was grumpy. I hate being grumpy. I hate trying to not be grumpy but anything I said sounded grumpy and short. So I kept quiet under the extra blankets we ordered for my freezing body. I was relatively nonverbal yesterday. This happens on bad days. Talking seems impossible on these days. That’s how everyone knows I’m sick. When I can’t talk.

My friend was supposed to come down and I thought it’d lift my spirits so I looked forward to it. I took a warm bath to calm my constant shivers. 6 minutes later I was out and my legs were angry red with pooled blood and I was so swollen I couldn’t bend my ankles. I was even worse now. I was exhausted. We had to cancel our plans and the harsh reality of my current limitations were once again, in my face.

Toward the end of the night, I felt a little better. By my Apple watch’s count, I’d taken 38 steps since breakfast. After laughing at some videos with my mom I turned over with my headphones in. When getting settled under the blankets, the button volume on my watch must have been moved because the sound went all the way up during Bazzi’s 3:15. This may not be a big deal to most. A minor inconvenience to some. To me it was catastrophic. I yanked out my headphones. Due to my HyperPOTS with high norepinephrine levels, my body freaked out. I began to full on sob. Uncontrollably sob. I couldn’t stop. It was just sound. But I couldn’t handle it. My mom came to my bedside confused and trying to figure out what happened. My pulse jumped by almost 40 beats per minute. My blood pressure dropped and my body temperature went up. Her touch began to panic me and caused my temperature to spike even more. I pushed her away and threw off the covers only to desperately grab them again seconds later to calm the shivering and tremors. I kept sobbing. And sobbing. And sobbing. Trying to breathe deep and acknowledge that all that happened was just a loud noise. I was safe. It didn’t matter. You can’t outthink chemical reactions in your body when it’s like that.

These are the moments that are hard. Because by no means should a song playing a little loudly trigger a five-alarm fire response, but it did. And it will continue to, for the foreseeable future.  I did find a way to disable the music controls but holy buckets.

I’ve been so spoiled being able to medicate in Portland with potent CBD so I haven’t had one of these episodes in months.

Sometimes I need these moments. I need to feel what I’m going through this deeply so I remember to give myself grace. I need to acknowledge where I am. Despite countless motivational quotes, there are certain things you can’t do. (Not right now anyway.) I spent a whole day catering to my needs and nursing myself to a somewhat stable condition only to break down over a volume increase.

That’s the reality of POTS. There are aspects of this that you can’t make pretty. You can’t dress up a breakdown. You can’t laugh off an attack like that.  It truly turns your life upside down.

 

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Photo Cred: Janie Barber. circa 2016.