What Happens When I Try to Exercise as a Spoonie With EDS and POTS

Exercise is important. We all know that, we’ve heard it many times. It helps with circulation, muscle tone and sends lovely endorphins coursing through your body. It helps keep your blood pressure, blood sugar and cholesterol levels in check. Plus, it gives you an excuse to wear your favorite yoga pants and sport a messy bun (which I do constantly anyway). It’s also used as a favorite bit of unsolicited advice given by able-bodied people to explain why us disabled and/or chronically ill people are still disabled/chronically ill.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Being able to exercise is a privilege. You probably didn’t realize that, especially since so many people dread exercising and have to talk themselves into doing it. That’s why gyms start gimmicks such as giving out free pizza at the door just to try to get people in to exercise. However, just because someone isn’t exercising in the way you think they should or to the extent you think they should, does not automatically indicate laziness or a lack of desire. Not everyone’s bodies are capable of withstanding exercises.

There are many spoonies out there who have what’s called exercise intolerance, where their bodies essentially freak out if they try even simple exercises. I am one such spoonie. Luckily, one of my medications helps me with my exercise intolerance and allows me to do some small simple strengthening activities, but it is slow going. The past week I have been able to exercise a total of 15 minutes a day! To a non-spoonie, that doesn’t seem like much at all. For me, it’s like I’m climbing freaking Everest every single day. It is difficult, it is exhausting and I face many, many setbacks.

So, I thought it would be fun, and educational, for me to share a bit of what goes on in my head as I attempt my exercises each day, to maybe help paint a picture of how difficult even small amounts of activity can be for a spoonie. Try not to take any of it too seriously, I surely don’t.

3:00 p.m.: “I should probably do my exercises so I have time to recover before dinner.” *stares blankly at the closet where my exercise equipment is held*

3:15 p.m.: “OK, I definitely should start exercising now. Here goes nothing.” I put on a bra, a dreaded task, and slowly rise up out of bed. I carefully peel each electrode pad from my TENS unit off my body and place them tenderly on their plastic protectors. After a quick trip to the restroom, since standing up makes me have to pee due to a stretchy bladder, I’m ready to go.

3:20 p.m.: I pull my extra large yoga mat out of my closet and unroll it on my floor. Already my heart rate is climbing. “Surely this counts towards my exercises.”

I proceed to begin my exercises given to me by a physical therapist:

Hip stretches. “Shoulders back, am I winging? Shit, I’m hyper-extending. Engage the core, re-position my rib cage, there’s that winging again…oh crap, tuck in my chin, no swan necks. OK, stretch….dammit, hyper-extending again!”

Back twist. “How far should I twist? How far is normal? Oops, was that a good pop or a bad pop? Ugh, hyper-extending again, engage your damn core.”

Hip raises. “Which muscles am I supposed to be working here? My thighs? That feels interesting. My back? Nope, that hurts. My stomach? That seems right…oh crap, I went to0 far again. Pull in your belly button, engage your core.”

Arm and leg extensions. “OK, engage the core, don’t hyper-extend your back…good, wait, what is that clicking sound…why is my hip clicking?” *moves leg in different directions until clicking stops* “Ah, OK, so that’s how hips are meant to move…crap, forgot to engage the core again. Oh man, I don’t even know what my shoulders are doing right now. How do normal people move their arms?? Dammit, engage your core!”

Plank. “Where are my shoulders supposed to go? Are they winging? I can’t feel if they are winging! I need a spotter just for my shoulder blades. Crap, engage your core, your butt is dropping. Shit, tuck in your chin, no swan necks.”

Child’s pose. “Ah, this feels nice. Why can’t all exercises feel like this? Surely this is building up some kind of muscle.”

Standing up to roll up the mat. “OK, remember to rise up slowly…” *sits back down until spots leave the field of vision* “OK, let’s try that again…slowly.” *rolls up the mat while trying not to pass out as room spins around me and my heart rate increases*

Recumbent bike. “Start slow, don’t push too hard. Easy going…why does my hip keep popping?” *quick adjustment* “That’s better. Crap, stop freaking hyper-extending your back! Engage your damn core!!! God, my head hurts…there’s that swan neck again…I don’t even care what my shoulders are doing anymore…are my eyes shaking? Can eyes shake? Why do they feel like they’re shaking? OK, don’t just stop, cool down…I think I’m cool enough.”

3:40 p.m.: “Let’s check my heart rate. 170? OK, maybe the bike was a bad idea. How long was I on it…five minutes?!?! Ugh! I need water, and salt, and my heating pad, and my tens, and sleep.” I lay back on my bed, allowing my heart rate to calm down to its normal rate. The room is spinning and my eyes still feel like they are shaking. I am hot and cold at the same time.

As I slip back into my comfort zone, I quietly whisper to myself, “Engage your damn core.”

Now, not all spoonies will experience the same things as they exercise. Since I have Ehlers-Danlos syndrome, part of my battle is trying to figure out how to move my joints without hyper-extending them. The other part is trying not to pass out thanks to POTS. That 15 minutes of exercise uses up about half of my spoons for the day.

All of that to say: if you ever feel the need to tell someone they aren’t trying hard enough to get better, please remember that things that may come easily to you (such as standing up without passing out) do not always come easily to others. For my fellow spoonies out there, whether you can exercise five minutes a day, an hour, or not at all, you are a warrior and you are rocking it. And, remember, it’s OK to laugh at yourself once in a while.

This post originally appeared on Spoonie Warrior.

Thinkstock photo via KatarzynaBialasiewicz.