I am an aggressive, competitive b*tch (when I my not busy getting fabulous selfies for my me-me-me blog) who thrives on setting the craziest goals I can think of, as long as they have some basis in reality. 

You have to keep imagining your life as an un-disabled or less disabled person and keep laying down train tracks in that direction. At least, that’s my strategy. Maybe you will get there. Probably you won’t. But what else is there to do?

I failed so many times at getting strong. Failed failed failed failed failed. Cut back on the pain drugs. Nope still needed them. Over and over. By the time Dr. Plance let me inject myself with C everyday (have you explored my site? This gives me widespread symptom relief, and I am very severely affected by EDS!), I knew a lot about exercise and a little about opiate withdrawal. Things went fast after that. Yay! All that time spent failing was time well spent. 

This year, I started swimming again, something I did a lot of growing up. I was unsure if my joints could take it, or if it would even be fun again. Training went well.

Goaldigger that I am, I signed up for ocean racing, crossing my fingers that I would get there, trying to outsmart Ehlers-Danlos, pushing as hard as I can without hurting myself or burning out. I have a long history of trying too hard, getting too tired, burning out and collapsing in anguish. Oh well. Not trying hard would be so, well, basic. I take it very badly when I do not succeed. I am not being childish or unrealistic. You try having this life-ruining disease.

Race day came. I felt strong. I felt ready. 

Race packet pick up: a swim cap, a t-shirt and a time tracker to strap on my ankle. Yay!

Race morning. So happy to be here.

I entered the wetsuit division. This would make swimming easier on my joints. I signed up for the one mile. I am an aggressive, competitive b*tch.

Another competitor came up to me.

No hello, no good luck, nothing, he just asked, “Is that a wetsuit?”

It was hard not to laugh. That is something I might do.

I touched his wetsuit. It had a coating on it that clearly was there to limit drag. Hmmmm. Didn’t know about that.

Yes, this is a wetsuit, you hyper-competitive triathletes! It says to all the sharks out there:

I AM NOT A SEAL

Charing out to sea!

The first ten minutes of any swim are very hard for me, as I experience an autonomic crisis. What is that, you ask?

My nervous system crashes because it gets confused by the sudden change in gravity, cardio demands, the cold temperature, moving all four limbs at once.

In a normal person, the body recalibrates immediately. Not genetically defective me. My muscles lock up. I am flooded with feelings of panic, claustrophobic, anxiety, except I am not afraid at all. My body screams STOP! begs me to GET OUT! (sigh) 

I ignore it. I keep swimming. It will pass. It is haaaaaard. But I know, in about 10 minutes, in one quick moment, my nervous system is going to figure it all out, and swimming will become easy. If you are someone who faints, do not follow my example. I have never fainted, but it can happen out of nowhere with EDS. I am hoping all that salt and coffee keep me conscious.

Rounding the bouys, I have hit my stride.

I try to keep all swimmers out of my sightline. I have to, or I will go after them. I must pace myself. When I get tired, I stop kicking to recover. Kicking consumes a lot of oxygen. You cannot breathe whenever you want when your face is in water.

Every stroke becomes a mediation.

• Arm overhead, that is time to rest

• Shoulder up, reach far

• Hand enters water

• Lock wrist, lock elbow

• Feel for the still water

• Push against it

• Push harder, push faster

• Hand exits water, time to rest again

I pay this much attention to how I walk and move, so it is easy when swimming. Like a blind person groping for orientation, I always focus on using my joints well. 

My mind drifts. It is relaxing.

OMG, I see the red buoy. I made it! Left turn. Shore bound. Yay!

OMG, I am going to catch this wave. Up. Stumble. OMG, I am going to catch another wave. Yay!

Sliding into home plate with a mouthful of seawater. Get up! Run!

Here it comes. Another nervous system crash as my body fails to adjust to the change in gravity, uprightness and running.

I am very pale. Not getting enough blood flow to brain. Wow, I feel bad.

F*ck! F*ck! F*ck! Every time my foot hits that hard sand it is like stepping on a knife because I have two giant heel spurs. But that adrenaline from the stabbing pain is getting my blood pressure up. This will help bring my nervous system back online. So it’s all working out.

Look at these two buff guys I just out-swam. How embarrassing for them. I have Ehlers-Danlos Syndrome. Swimming is mostly technique.

A banana, a donut and a very respectable finish in 35 minutes, 6th in my division of wet-suited women of a certain age. Happiness!

A kiss for the philanthropic patron, dedicated home-care team, and personal paparazzo* of this Ehlers-Danlos experimental research subject.

Mr. Pennington! 💕💕💕💕💕💕💕💕

*The Swim Mechanic Bryan Mineo came up with personal paparazzo. Good one, Bryan.