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What It’s Like When My Ehlers-Danlos Syndrome Has a ‘Party’

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I have Ehlers-Danlos Syndrome (or EDS, for short), a type of connective tissue disorder. EDS means that my body produces faulty collagen, the stuff that holds the body together. Think of collagen like a rubber band. In a “normal” human, that rubber band snaps back into place. In an EDS human (specifically hEDS, the kind that I have) the rubber band is loose and stretched out. Meaning, my joints tend to slip out of place. Oops!

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

But that’s not the worst part of EDS. No, the worst part of EDS is that it’s insecure. That’s, right, EDS is that one girl from high school who could never go anywhere alone (looking at you, “Jessica”*). So, what does this mean? It means that EDS invites friends to the party (aka my body). And the friends all show up.

In my body, Ehlers Danlos Syndrome invited three dysautonomia siblings, postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS) and  orthostatic intolerance (OI). EDS also sent out invitations (that were unfortunately accepted) to gastroparesis, global intestinal dysmotility and Raynaud’s phenomenon. Hashimoto’s, mercury toxicity and antimony toxicity saw how much fun the party was and decided to show up as well. Two others were invited, common variable immune deficiency (CVID) and mitochondrial disease, but the RSVPs still haven’t come back on those yet.

As you can tell, it’s a bit of a full house.

So, what exactly is happening at this gathering?

Well, Ehlers Danlos Syndrome is having a grand ole time sublaxing (think of this as a partial dislocation) shoulders and fingers. Sometimes elbows and hips, too. POTS is deciding to speed up the heart rate to dangerously high levels, while NCS sees this and tries to correct it by bringing both the heart rate and  blood pressure down really low, really fast, resulting in fainting, or near fainting. These two just can’t get in sync! And OI is letting it happen with every change in position. And when these siblings get together, they impact everything the body is supposed to regulate on its own, like heart rate,  blood pressure, temperature, breathing, etc.

Gastroparesis is hoarding everything that enters the stomach, not letting it pass for hours or sometimes days. Global intestinal dysmotility doesn’t think that’s fair and decides that for however long the stomach gets to hold on to its contents, the intestines will hold on twice as long! Raynaud’s has decided that the slightest change in temperature will result in diminished blood flow to extremities, because, why not.

Hashimoto’s has decided to attack the thyroid to prove how much stronger it is. And the metal toxicities are having a blast in the brain and gut, messing with neurons and nerves and generally making mischief wherever they go.

If CVID is here, it would explain getting sick after doing too much. Like, having people over for dinner.

And if mitochondrial disease is here, it would explain the insurmountable fatigue and loss of muscle coordination.

All in all, it’s a busy place. And that’s not even everything! I’m so used to living like this, I tend to forget what I experience isn’t “normal,” and that “healthy” people don’t have these same symptoms. I forget that it’s not normal to have nearly died twice or to have been fed through veins, or to have veins give out. I forget that healthy people may know what hunger feels like and when they’re full. I forget that waking up covered in bruises is not  something that happens to everyone and that no, you shouldn’t feel like you’re about to faint just by moving positions.

So, what’s a girl to do about it?

I take more medications than I care to admit. I have a feeding tube for daily saline to help keep me upright. I don’t eat solid food or anything  thicker than juice. I rest during the middle of the day and have a rollator (think walker with wheels and a seat) to go long distances. I shower sitting down, and I am always dressed in layers. I have a wheelchair for emergencies and use my disabled parking pass on bad days.

I’ve been to the Cleveland Clinic (was told that I am too complicated), spoke with the country’s top motility specialist (who told me that, after  seeing my records, there was nothing he could do for me) and am currently being treated at the Mayo Clinic, in addition to my doctors in Georgia, Texas and North Carolina. I get my groceries and prescriptions delivered because leaving the house is difficult.

But I also fight. And I fight dirty. I’ll do/try anything and everything to live a “normal” life. Juicing, coffee enemas, mantras, meditation, yoga,  acupuncture, acupressure, power of positivity … you name it I do it. Because I deserve to have my life back.

While none of my conditions (other than the metal toxicity) currently have a cure, the minute they do I’ll be shutting down their party. I know it  won’t be easy, but it’ll be worth it.

I’m more of a curl-up-with-a-good-book-and-tea kind of girl, anyway.

Getty image via fizkes.

Originally published: January 27, 2020
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