Making music in my closet and living with Hypermobile Ehlers Danlos Syndrome

March 12, 2025

Well hello people!

First of all, I have some new music for you to check out, so stick around because I'm gonna drop the video right here in this post.

But before we get to the good stuff, lemme share a bit about what's been happening in my life, as of late. Because, well, to be honest, I really don't talk about this enough.

What it means to live with hypermobile Ehlers Danlos Syndrome

I have hypermobile Ehlers Danlos Syndrome which basically means that the sticky parts of my body don't, well, stick. All the parts that hold my joints together, my organ tissues, etc just don't function properly.

And whether it's by those faulty mechanics or something else to do with the condition, I also have a lot of problems with my digestion, breathing, allergies, and more. Chronic headaches became my everyday life in March of 2024 when my neck laxity got so bad that I almost always have vertebrae slipping in and out of place.

(Side note - super thankful to the physiotherapist who was able to recreate a migraine in her office by purposely moving my vertebrae in a way they wouldn't if I didn't already have that problem. The X-Rays, CT scans, and MRIs that are routinely performed in Canada do not check for the front-to-back laxity that I deal with and everyone else was throwing their hands up in defeat from my migraines).

I've come to the (tentative) conclusion that my slow digestion is being caused by severe muscle spasms in my pelvic floor, iliopsoas, and other muscles in the lower back/hip area. Since my lower back has a lot of laxity and my hips are constantly slipping out of place, the muscles in these areas have to work overtime. The resulting tightness is making it nearly impossible to move food through and, on many occasions, I've needed strong meds that keep my housebound for weeks on end. Luckily, I've learned that proper massage therapy and other release techniques plus strengthening exercises can reduce my digestive issues, but I believe that I'll probably never be back to "normal."

I share these details not for your pity, but for your understanding and in hopes that maybe I can help other hEDSers understand their own bodies better and give them things to discuss with their doctors and physiotherapists.

Accepting my present & forgiving my past

My symptoms have progressed to the point where I am either injured, medicated, or at the mercy of a migraine most of the day, every day. I have my good moments and I run with them when I can. I'll go to the beach, go for a walk, make a little music, or create (a piece of) a painting. But know this - if you see me on my good day I'm not 100%. It's been years since I have ever felt OK with no pain. Every day is a careful calculation of food, water intake, dancing around potential allergens, asking myself if the payout is worth the risk for any activity I participate in. I do physiotherapy daily, massage therapy when possible, and a LOT of mental health work.

Wrapping my mind around the "illness" part of my condition is one thing. It actually came on its own - the ability to push the physical pain to the back of my mind; a quiet appreciation for the beauty I've found in the world when I've been forced to slow down.

But the limitations of the "disability" part have been more difficult. Accepting that I cannot work has been the hardest thing I've ever done. I've pushed back against it for years. I opened my own copywriting business at twenty-eight years old when I realized I couldn't keep up the demands of my physical job. My goals of becoming a psychologist were hampered by my family's needs and my inability to stretch myself between work and school. So, working in retail to make ends meet, I created my business.

It allowed me the control over my schedule that I needed. But, this was before my digestion got bad and it was certainly before the migraines. Despite heavy physical therapy, my body continues to deteriorate. Albeit, at a much slower pace than it would have without the strength training.

Slowly, though, I found myself working fewer and fewer hours. Unable to keep up. Exhausted. In pain. Needing frequent breaks from sitting or standing or moving. Getting big flareups of migraines and injuries and infections that left me off work for months at a time. I closed my business for a year, once, and started back from nothing to grow it, again. But the uphill climb got steeper and steeper.

Did you know that one study found that 12% of people with hEDS are unable to work because of the condition and that 24% were only able to work part time? I'm willing to bet, too, that the older the person is, the less likely that they'll be working - a result of the cumulative damage the condition does to our systems.

Letting go of the need to control my future

This past year I found myself fighting an infection, mono, COVID, bronchitis, migraines, much more frequent and painful partial dislocations, severe allergies, breathing problems, and digestive dysmotility like I never have before. And the decision finally came, after needing over 6 months off work: it's time to stop. It's time to spend every good moment I get taking care of my health.

Whether it's carefully preparing food, manually massaging my spastic legs, or propping my head up to stabilize my neck while a migraine shakes its way through my body.

Whether it's precise strength training, getting outside for vitamin D and nature therapy, or laying on a baseball to pop my hip back into place.

Whether it's calculating the time between bowel movements, making myself sick with medications, or drawing something pretty to remember how beautiful life is.

Whether it's physical health or mental health.
I'm always working on my health.

And, sometimes, that means making music in my closet 😆