This post is actually about a month overdue. It took me some time to be mentally ready to write this as I wanted to truly process everything first, so I could share this with no ambiguity.

THE DIAGNOSES

I finally have a clear set of diagnoses including mixed presentation Dysautonomia (Vasovagal Syncope and Hyperadrenergic POTS), as well as Hypermobile Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS).

In a nutshell, the POTS part means my body struggles to fight gravity when I stand, causing blood to pool in my legs instead of reaching my brain and heart at healthy levels. This is why by the afternoon or evening, I dip in my sharpness and clarity and have a profound sense of physical weakness.

My body has a backup generator though, the Hyperadrenergic side which pumps out high levels of norepinephrine and adrenaline in attempts to shoot the blood back up to my head. Although having high amounts of adrenaline is the cause of much of my discomfort in the past, this, my muscle tone, and way too much alcohol, are what allowed me to travel the world, dance, and play sports for most of my life, even if it came with a lot of internal fighting and occasional fainting.

This leads into the Vasovagal Syncope side of things, which is where I have to be most cautious. If I’ve been standing and walking all day, and my heart rate reaches around 120 bpm (re: Hyperadrenergic POTS), that backup generator completely shuts down, and I black out.

TREATMENTS THAT HAVE CHANGED MY LIFE

I’ve reached the other side of a challenging titration for my POTS treatment, and things have improved in ways I couldn’t have imagined. Through all the side effects, I’ve now reached therapeutic dose and have gained a level of sustained energy, clarity and function that has completely changed how I’m able to navigate my days.

The only caveat is that while these have improved, I’m more susceptible to fainting if I’m on my feet all day because I no longer have the adrenaline keeping things upright. Also, since it doesn’t completely silence that response, it’s more of new baseline that I still need to navigate with intentional pacing and spaciousness.

On the EDS side, I’ve learned that my overly flexible (unstable) joints (which I thought was a party trick my whole life!) force the surrounding muscles to work overtime just to keep me steady, which is where my chronic muscle aches come from. This is where I’m integrating tools like a Sacroiliac Belt to help with my hip stability, Orthotic Gel Inserts to support my arches, and other targeted supports.

ONGOING TITRATION

Lastly, there’s MCAS, which essentially means my immune system is overly responsive to certain triggers, which for me is primarily stress. This leads to random inflammatory flares that present as heat in my spine, neck and face, as well as things that look like an allergic reaction, like consecutive sneezing all day and itchy eyes. I’m currently titrating my treatment for MCAS and, while it’s a process, I’m hoping this will silence all the noise.

SO HOW AM I DOING?

To be honest, it’s been a lot to digest, mostly because these answers explain everything about my life.

But more than the diagnoses, I’ve realised things about myself I’ve always deeply known, but never saw clearly. I’ve realised that the systems I’ve built were to manage a load I didn’t have a name for yet.

I used to try and fight through everything, but to lessen my burnouts, I’ve learned what to listen to, and what to let go of; how to distinguish the voices of true friends vs. projections; how to tell the difference between the thoughts that truly protect me and the ones that are just noise.

The thing is, I’ve been carrying all of this manually for 37 years, through years of medical gaslighting and the kinds of misunderstandings that come from people who could never truly see me, and missed the fact that my thoughtfulness comes from distillation of what’s important i.e. seeing everything and still choosing to be kind.

Someone once told me to “stop saying thank you, it’s my job,” 🙂 but for me, this has never been just a job, and I will never be more grateful to all of you than I am now, knowing the exact weight that I’ve been carrying all my life.

LOOKING FORWARD

Hopefully you’ve noticed a slight change in my pacing, but there’s more to come! I’ve been working on some fun huge projects behind the scenes, and some surprises (for the team as well) and can’t wait for all the big reveals. Thank you to all those who sent such sweet, thoughtful notecards and those who go above and beyond to show support for the store. If you have any questions please feel free to IM.

Scafall stands as my creative sanctuary and I’m grateful you’re here.

♥️