Category: pots

Getting Married with POTS Part 2/2

In seemingly no particular order, here go:

  1. 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)
  2. 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.
  3. 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.
  4. 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
  5. 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.)
  6. 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
  7. 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.)
  8. 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)
  9. 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)
  10. 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
  11. 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.
  12. 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.
  13. 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
  14. 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!)
  15. 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

Photo:Alexa Lei

“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. 

photo: Alexa Lei

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/

Photo:Alexa Lei

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.

All Photos by: Alexandrea Leigh

“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 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