One of the first thoughts I had on getting a diagnosis of EDS, was that I wish I could tell my PE teachers.
From as far back as I remember, I was terrible at running. I got tired easily. If I pushed to keep up with the class, I invariably sprained something. I was accused many times of “making it up because I didn’t want to run.”
I wanted, desperately, to be able to keep up. What I would have needed at that age in order to do so would have been very specific wrapping of knee and ankle joints and coaching on stride.
But that still wouldn’t have addressed the POTS issue. See, even later, as an adult, even as a heavy adult, my blood pressure has run low. The last time I was fit it was running 90/50 on the regular. I’m completely sedentary now due to other health issues, but it rarely gets over about 120/70, despite a significant weight gain. I would get lightheaded and have to sit down, I still do, and it would come at unexpected times, because at the heart of it POTS and EDS affect autonomic regulation. My temperature drops and rises at odd times. My circulation is sometimes great and sometimes horrible. Stress (and especially people yelling) shuts things down.
Swimming was better exercise for me, both because of the pressure of the water and the horizontal nature of it. But I could do things like weight lifting and jumping jacks, if people gave me enough time and gentle encouragement (or just didn’t yell.)
Most of the injuries I had relative to PE came because someone was yelling at me or berating me for not keeping up. It was not until I was getting PE waivers for being on swim team that I started actually enjoying exercise. As an adult, when I’ve been healthier (One of the issues with EDS is that it makes one more prone to a host of other illnesses, in my case, rheumatoid arthritis) I have been very fit indeed. Stairs were easier than flats. Walking is better than running.
I used to wrap my ankles and then get yelled at for “doing it for the attention.” I didn’t want attention, I was an odd duckling of a 13 year old, I didn’t want anyone to look at me, but the wraps made my ankles feel better. Also, if my ankles were wrapped, people were less likely to yell at me to run, and I was SO bad at running.
So I didn’t wrap them enough. And by the time I was in my 40s, I was falling a lot due to unstable ankle joints. And now I’m in a wheelchair a significant part of the time, because of the fall risks.
The best thing we can do for kids with EDS is to learn to avoid damage, strengthen the core, and listen when they tell us something is too much. Because learning to listen to their bodies is the best chance they have at keeping function longer.
“No pain, no gain” is not useful for people with EDS. In us, pain usually equals damage. Find other ways to fitness, and tailor the fitness goals to what will help the child. Strengthening the muscles that support the core, ankles, knees and shoulders. Don’t push flexibility beyond comfort, EVER, because EDS kids are already too flexible. Gentle exercise will always be better than pushing to the limit. Preserving joint function over time will give incalculable benefits for lifetime fitness.
