The Beauty of Swimming with Ehlers- Danlos Symdrome

Photo by Emma Blackett

I have mentioned breifly in a pervious post how I miss parts of swimming. Teaching, sprinting, lifeguarding. The parts of it my body will no longer let me do. This is true. I miss that. What I didn't go into is the fact that I can still swim, and it's one of the things that makes me happiest in the world.

When I was younger swimming was pretty much the only sport I was good at. Learning came easily to me - partly becuase I was unusually flexible. Which I thought was just 'cool' at the time. Things like making my shoulders flex behind me for a perfect backstroke streamline came easily. Lifting my arms behind me to do butterfly was never difficult - I don't have the painful memories of learning that particular stroke that most other swimmers do. My arms just went where I wanted them to. This was a similar expereince to Caroline Roy - publishing an article in Brain and Life Magazine about her journey with EDS and swimming: "By middle school, I had become a competitive swimmer and was particularly good at the butterfly, thanks in part to my unusually flexible shoulders, which gave me a greater range of motion and speed. On land, my hyperflexible joints often led to dislocated ankles, elbows, and ribs." - Caroline Roy - A Swimmer Returns to the Pool After Ehlers-Danlos Syndrome Diagnosis - Brain and Life Magazine.


Living with Ehlers-Danlos Syndrome - jokes are often made that our worst enemy is gravity. This is well documented within the social media circles of EDS through memes, posts about "gravity getting the better of me", etc.


You see - because our connective tissue is weak and our nervous systems are not created equal to those of healthy people, gravity is like some kind of bully to us. It's this relentless pull that just seems to want to make us sicker. It pushes our body weight down onto our joints, causing dislocations, tears and injury, even early onset arthritis. It pools our blood to our abdomen and lower extremities, lowering our blood pressure and making our hearts race. It beats down on us every minute of every day making it difficult for us to do the simplest of things like hold a good posture.

Imagine your tendons had all but dissapeared. You have to hold yourself up all day using just your muscles. So that's using the conscious applicaiton and energy-sapping strength of muscle contraction to hold your posture. It's bloody tiring!


And then - we get in the water. Water is like turning off gravity. When I get in - it feels like I'm flying. As soon as I get in the pool my body cools down. Relaxes. Gravity is gone. I feel relief as my circulation and blood pressure normalise - there is nothing to fight any more. It feels like someone injected my brain with energy. Suddenly I can think clearly. It's not labour intensive to move my legs. To put one foot in front of the other on the bottom of the pool. I feel like I can do anything in that water.


No More Pain

In that water - with the pressure taken off my joints - the vertibrae in my spine - pain I live with all day every day eases. Sometimes dissapears altogether. I feel as if I can finally take take a breath that is not distracted or encumbered by pain.


Just Me and the Water

I use crutches on land to walk. Without them I have bad balance, very little strength in one leg, and you guessed, more pain. In the water; goodbye crutches. I've even learned to use pull paddles and fins to be able to kick - albeit copensating with my stronger leg. I don't feel held back. It's just me, moving through the water. One thing that feels nearly the same as when I was healthy.


Time to Excercise

In the water - I can do 10X what I can do on land. Walking to the letterbox or hanging out the laundry is tiring for me on land, becuase my blood pools and I have ot use uneven muscle contractions to keep myself steady. But in the water - I can swim 1.5 kiliometers - 60 lengths of a standard pool - at a steady pace. That's a 45 min workout, getting my heart rate up in a healthy way that is increasing my cardiovascular health and muscle strength. That is invaluable. Becuase I can't ride a bike or use most gym equipment due to various injuries - the pool really is my only ticket to movement.


Life Saver

We don't talk about this much, but it's common knowledge among those who are moderately to severely effected by EDS that the complications of this condition can kill us. It's not recognised or treated as a life threatening condition, but the complex and mal-researched nature of it is scary and life-threatening. Events that are caused simply by our genetics such as the onset of POTS, or a disclocation can have us bedbound. Being bedbound can cause our organs to slow down and more complications to arise. We can start to rely on more medical equipment to stay alive like Picc lines, ports, or feeding tubes. Complications from having this equipment in our body are often fatal. Becuase our vital organs are invovled - Infection hits hard and fast - leaving little time for intervention.

Photo by Jair Lázaro - Unsplash

So - with that knowledge - and with a body that is more at the 'moderately effected' than 'mildly effected' area o the EDS spectrum - I am so very thankful for swimming. When I say it might be saving my life - I'm really not joking. Having the ability to keep fit and keep my blood pumping through my organs is something I will never take for granted again.


So keep Swimming Zebras!


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