Unforeseen challenges in keeping up with my EDS exercises
I wrote my last post about the EDS exercises that have vastly improved my mobility, strength, stability, and pain. Since writing it, I've been finding myself hyper-aware of the shortcomings of such a protocol.
In an ideal world, I would exercise for an hour every day -- SIJ stability on Mondays and Thursdays, arms/shoulders on Tuesdays and Fridays, and legs/biking on Wednesdays and weekends. That way, I'm hitting all muscle groups at least twice a week, which is just barely often enough to not lose strength.
Anyone who's ever tried to exercise daily knows it's a struggle; you can forget, or have plans one day, or simply feel too tired/stressed/whatever and miss a day. Add to this the complications of not being healthy. Some days my joints are so loose that any exercise will simply end in pain and injury, without any strengthening/tightening. Other days I'll be too nauseous or crampy to do the exercises that involve lying down. The worst, though, is fatigue.
I can't exercise right after eating without being sick, so I have to time it right. Unfortunately, I often crash and have to take a nap about an hour after I get home for lunch. These naps can take a few hours, and by the time I wake up I need to eat dinner. That means I won't get around to exercising an hour or two before bed. Odds are there are other important things that I need to do before bed, but even if I do have time, I rarely have that kind of energy late in the evening. Sometimes I try to power through the afternoon crash. As I've mentioned in the previous post, that can result in me falling asleep mid-exercise, face down on the wood floor, limbs subluxing or hyperextending. Plus, it feels terrible throughout the whole exercise, and I'm likely to hurt myself from not being that engaged.
That being said, I have started having more and more days lately in which the fatigue isn't so bad! I've had entire weeks now without naps (although I napped every day this week...), which makes finding time to exercise much easier! When I do miss a few days, though, it can be pretty rough to get back into it. I lose strength so quickly, and things get looser, which makes everything more painful.
There are other complications that I have not had to face as much as others. POTS can make it difficult on a bad day, but most of the exercises can be done while sitting/lying down, and my POTS isn't bad enough to make it impossible. Cervical instability can be an issue -- I've definitely had days in which I couldn't do a single exercise without my neck popping, discs slipping, nausea, etc, but my neck is generally not as unstable as many zebras. Some people with ME/CFS symptoms may crash from the exertion, MCAS can get badly triggered by exercise-released histamine, people who work 40 hours a week may have trouble finding time, others may get seizures... there are so many reasons it could be a challenge for zebras to do such a protocol.
My PT is often amazed by how well I'm doing, and repeats that it's because I'm her "most compliant" patient. She has no clue how hard it is to "comply." I feel privileged that I am able to keep up with as much as I can. I recognize that people with worse fatigue, more pain, or any other complications, cannot possibly comply as much as she'd like, despite every intention. So, while I do highly recommend the protocol, I also recognize the additional hurdles that EDS zebras have to clear to even try to get better.