Ummmmm, this is going to be a long one!

I am not sporty spice. I have never liked anything that could be called “exercise”, and I was delighted when my wobbly, sprained-if-you-looked-at-it-wrong ankles got me a doctor’s note that I was not allowed to “run or jump on uneven ground” and then eventually to be permanently excused from PT class!

At the same time, anything that could be called “holding still” is also my kryptonite!

I hate-hate-hate working out—I hate everything about it. When I get hot, my face turns purple and my skin swells, and it just feels wrong—I can see my swollen cheeks out of the corner of my eye, and I can feel that my fingers are larger and are touching each other differently. I can’t stand the feeling of sweat on my skin, and if it gets trapped anywhere (bra line, groin, butt, toes) I get chafed quicker than you can blink. Chafed as in red and irritated, and chafed as in skin sloughing off and intense pain. I’ve been called “the princess and the pea” more than once: EDS means sensitive skin; my skin gets injured so easily, *and* I feel everything (sensitive in the sensory sense!).

I hate feeling my heart race, and sometimes I have a “bounding pulse” where my entire neck and lower head (collar bone to ears) throbs intensely with each heart beat. Heavy breathing hurts—it often feels like I’ve breathed in acid and each movement of air in or out hurts in my bronchia. And we haven’t even gotten to the injuries! Every single form of cardio I’ve ever tried injures me. Outdoor bikes require balance I don’t have and the mount/dismount maneuver is the exact posture that most frequently subluxes my kneecaps. Indoor bikes have the petals too wide-set and my hips and knees hurt and my feet go numb. Rowing aggravates my upper back and wrecks my “good” knee. Swimming has too many degrees of freedom—it’s like I can hurt all my joints at the same time! Obviously, I’m not even going to mention any kind of high-impact activities.

As you might have guessed from my purple face, my body has trouble dumping heat when I’m active. Thermal regulation, including sweating, is part of the autonomic system and has never been something my body does well. I haven’t had my sweat production tested, but I suspect it’s not right. When I get hot I feel like I’m going to die and I will get a sort of panic-rage reaction. I’ll start ripping clothes off (god help me if the zipper on my coat is stuck) and I can’t even speak I’m so rageful sometimes. I don’t do cold well either, but when I’m cold I just don’t like it, and I can always start moving around to warm up, so it never induces the panicrage feelings.

I hate being in the sun: it makes me overheat, it feels like someone is stabbing my eyeballs, I get sunburned incredibly easy, and the sun makes me tired. If I spend 30 minutes sitting in the sun I sometimes have to come inside and sleep for a few hours.

Stretching is 100% contraindicated for EDS. It also doesn’t work—I hit the end of range of the joint and still don’t feel anything. Literally all I’m doing is pulling on the tendons and ligaments and NOT stretching the muscles. It is the worst of both worlds.

Strength training isn’t any better. Machines seem like they would be good since they kind of guide the range of motion, but they’re never quite right ergonomically and actually encourage me to move into dangerous range of motion. I even have to be very careful with physical therapy, and one of the most helpful things about having an EDS community is finding the names of PTs who are experienced with hypermobility. Symmetric movements in a more limited range of motion along with external feedback to aid my proprioception have been hugely helpful (think: clamshell with a resistance band around the knees instead of standing or solo-leg-lifting hip abduction).

Yoga is a nightmarish minefield for me—the last thing I need is to contort myself into a weird position at the end of my joint range and then hold still there. It wrecks my back faster than any other activity besides laying down on the floor on my back (I get about 2 minutes in that posture before my SI joint goes). Things like pilates and tai chi are much, much better. They involve movement in a mindful, controlled way. It’s a funny thing, though, because moving *too* slowly is also problematic. In zen meditation retreats they alternate “sitting meditation” with “walking meditation”, where everyone does a kind of socially distanced conga line, walking in a big circle around the meditation room, but the walking is suuuuupppppeeeerrrrrrrr slow (in ten minutes we move about 30 feet). Walking like this can mean spending a long time in each different “component” of the posture—shifting the weight slowly to the front foot, slowly peeling the back foot off the ground heel to toe, slowly swinging that back foot through the air to the front, slowly putting the ball of the foot then heel (or does it go the other way—I literally do not know how to walk!) down. Those are excruciating for me, and also trigger a strong fight/flight reaction in me. Standing on one leg is terrifying for me because I can feel my ankle and knee wobbling; if it starts to sublux in that posture, it’s going to fully dislocate and I’m going to crash to the ground (which would likely mean many other injuries on top of the kneecap dislocating). When my kneecap subluxes when I have both feet on the ground I can usually catch it and shift my weight so I don’t have a full dislocation, and when I do balance exercises it’s different because I’m not moving the other leg, so I can focus more completely on the muscles of the leg that’s balancing. So, walking meditation the way I’ve seen it done is absolutely terrifying to me, and I start breathing really shallow and fighting off my fear. It also sends my upper back muscles into screaming pain.

And yet, I hate being still because it means my muscles have to be in a fixed state (trying to keep my body in whatever posture it’s in), and they start seizing up and spasming, which cascades into all kinds of problems. I have ADHD, but sometimes I think—I’m fidgeting to *prevent injury*; fidgeting and moving are an adaptive response to my condition!

When I met with the geneticist who confirmed my hEDS diagnosis earlier this year, we had an interesting conversation about movement. He said “never sit for more than 2 hours and never lay down for more than 12 hours”. My entire body was nodding YES at that. His theory is that people with connective tissue disorders can lose muscle mass more quickly, so we decondition much quicker than normies. 2 days of bedrest might be much more catastrophic for me than someone else. If I sit for an hour, I’m always stiff when I get up (and often micro-sublux something when I first start moving, especially my ribs).

So I am eternally trying to strike a balance—not too much movement, not the wrong kind, not too fast, but not too slow! I always feel like that line from Austin Powers (feed my fish … but not too much!). Rest when I need to but never for too long in one stretch. I naturally gravitate towards moving and dynamic things—my job lets me move around a lot, but isn’t heavy labor, and my hobbies all involve moving around (except reading, although I used to read while I walked). I especially like weaving because it’s nearly a whole body activity with a lot of movement and structural breaks (I have to stand up and advance the warp every few inches of weaving—so every 10 minutes there’s a built-in movement break!). Movement can always be dangerous because things can start to slip, but holding still is guaranteed to seize up my muscles.

Walking is the least harmful exercise for me, although even that is hard on my SI joint and my feet. I have to avoid anything too repetitive and I alter almost everything—I figured out how to do my ironing and vegetable chopping sitting down!

When we all got sent home for COVID last year I thought it was going to be great! I’d be able to take as many breaks as I needed, and really listen to my body and not just push through all my pain. Instead it was a disaster for my body because it meant my job was suddenly 100% computer work. Sitting all day *hurts*! It did make me realize why I struggle to find time for my PT every day. I can’t do PT within ~3 hours of eating (if I bend or put pressure on my abdomen I get heartburn or regurgitation—my esophageal sphincter is just not up to that task). I also am very prone to “post exertional malaise”: too much exercise or the wrong kind leaves me incredibly exhausted both a physical and brain fog where I can’t think or read or even sit up. My body feels like it weighs a thousand pounds. This is common for EDS and chronic fatigue syndrome and other post-viral illnesses. Long-COVID has many of these issues along with the autonomic dysfunction, and I’m hopeful there will be some medical breakthroughs because of the epidemic of long haul COVID we are seeing (which also affects many doctors, thus personally motiving them to figure out what’s going on!). So, exercising in the morning is a triple no (I have to pee too often, the post-exertional malaise ruins my entire day, and I need to be careful with my posture so I don’t disrupt my digestion).

I also have to be careful about overdoing it. I can push through a lot of pain and fatigue, and I’ve done it so many times it’s become somewhat habitual, so I don’t always notice I’m doing it. But there are always consequences, and this isn’t a zero-sum situation. I can’t just add an hour of rest on Saturday to make up for an extra hour on my feet on Tuesday.

@ehlers.danlos

#MyEDSChallenge

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders