Happy Summer 2022!

Hello friends! It’s been a while! What have you been up to?

I have a full life these days that Ehlers-Danlos Syndrome is no longer ruining. So, I forgot about my blog.

I remembered it because I like to post about the annual Dwight Crum Pier-to-Pier ocean race, especially if I got a good pic. I did this year.

To be clear, I am not normal. I still consider myself a disabled person. EDS remains a significant, expensive, annoying, painful, and time consumptive part of my life. Only now, I am very high functioning.

I tape up my hands so my fingers don’t bend backwards.

I am the same person I always was, inside and out, but with daily injections of ascorbic acid – yes, I am still doing them – my harrowing EDS problems are a shadow of what they once were. Yay!

Not only did I forget about my blog, but I also forgot to train for the Pier-to-Pier. I swam only twice in 2022, and one of those was just a doggy paddle out past the waves.

The problem is that my triathlete friends – get yourself some of those, they are happy people! – like to meet at 6 am to go for an ocean swim. That's a little cold for me. I was like – um, I'll hope someone will want to go some afternoon. But that didn't happen.

Then I forgot that August comes right after July. I had it in mind that August was about six months away.

Suddenly the race was a week away. That is no time to start training. That is time to start tapering, or resting your muscles before the race.

I visualized my swim, remembering how nice it is to be out there in the long field of swimmers with paddle boarders watching over you in the bubbly bluey-green Pacific on a sunny day, and declared myself ready.

I wasn’t worried. Just because I hadn't been swimming does not mean I was not exercising. In fact, now is the strongest I've ever, ever been.

Here is what I've been doing for exercise

I developed email apnea during the pandemic: when you sit at your computer or zoom screen so stressed out that you continuously hold your breath.

For me, this seems to have caused all sorts of digestive problems, which is interesting because I just heard on the Hypermobility Happy Hour podcast that EDSers suffer from blood pooling in the abdomen. So, best to breathe well and get that blood moving. Now you know.

To fix myself, I went to physical therapy with someone trained at the Institute of Physical Art. I have never had such precise and effective manual work on my body. This PT got my diaphragm freed up and properly moving like it used to, relieved nerve compression around my low back, and mobilized my injured foot. Yay!

Also, I found this exercise platform I am enjoying so much, I must tell you about it. It is all about breathing with very light stretching.

You see, stuck at home during the pandemic, my diversity of movement diminished. My body needs to move a lot to stay calm. Not moving, I will hurt and feel strain in new ways. That is a big problem when you have a disease that causes fatigue so profound you can hardly move. EDS is such a nightmare.

Static stretching (holding a stretch) is not productive for me. I avoid it. I love Oxycise because breathing into a pose gives me tremendous relief without twisting any joint far. It's also feminine and relaxing, which was missing from my workouts.

The X3 Bar

My lovely primary care doctor recommended I get this crazy contraption - the X3 Bar.

Mr. Pennington was all over it. Who does not want to look like this? I sure don't, but the way bands load tendons and ligaments strengthens them. I’m in!

One fantastic thing about the X3 Bar is that there are only eight exercises, and you only ever do four of them in one day. Four is a number very close to zero. So, the suffering ends quickly. Amen to that because it is hard.

What else do I do for exercise

I lift with 10-pound dumbbells, that is, one 10-pound dumbbell in each hand. Yay!

During the pandemic, I took up rucking. Note that is an "R," not an "F."

I got this idea from a Strong First blog post: Take Your Kettlebell for a Walk. I love that site. I like to pretend I'm one of those people.

Nowadays, I never walk or hike without one heavy weight. Weighing down one side builds stability into the spine.

I even haul my 15-pound kettlebell on a walk to the store to buy a carton of milk. (Don't go vegetarian or, God forbid, vegan, kiddos. Those eaters have much higher rates of osteoporosis, something hypermobile people tend to get young. Vegans get the most cracked bones. You don’t have to eat tons of animal products to avoid osteoporosis, just don’t eat none.)

Rucking builds strength and endurance. Who has the time to waste simply walking? I need to be strong and powerful.

Start with a 1-pound dumbbell, and yay for you!

Grip strength is related to brain health, so grab anything, hold it and get your hands strong.

You must go slowly when strengthening a delicate hypermobile body.

Always be proud of yourself!

Always keep trying!

Other helpful exercise

We upgraded our spinner to an air bike with arm motion so that I can get whole body circulation.

This is oh so nice for keeping POTS symptoms down. I never thought my delicate spine could tolerate this much aggravation, but it does.

I put something dumb on to watch, like 90 Day Fiance UK.

Then I warm up.

Then I push myself and get my pulse high high high, like above 130 or 140 or 150 for a few minutes.

Then I reduce the intensity and let it come back down.

I repeat and repeat and repeat. Getting your heart rate up over and over is an excellent method of cardiovascular conditioning.

Cycling is not great exercise overall

Cycling can cause back pain, and it does nothing for bones. But working those big leg muscles is very health enhancing. So take care of your bones by getting impact in other ways. Hop in each foot 100 times per day, take up line dancing, or do some jumping jacks. You get the idea.

Play a racquet sport or throw around weighted balls to get plenty of impact vibrating through your wrists. That is often an area of low bone density.

A new injury

Because rucking was so fun, I added carrying an 8-pound dumbbell when I went for a run, just to shame the other joggers who run by holding nothing.

I started with a 3-pound dumbbell. Ouch, when I do something new with my body, it will ache excessively.

Part of the problem with EDS, IMO, is that my body is improperly calibrated, overreacts, and cannot tell the difference between falling down the stairs and picking up a paperclip. The pain signaling in both scenarios is the same to my brain and is as real as a cancerous tumor.

No, my pain is not psychosomatic, conversion disorder or stress related. It is how my body perceives and understands forces it runs up against. Explore my blog for methods on turning down pain signaling. A big one is exercise.

I respect my body’s processing shortcomings and give it time to adjust. It quickly did and I went to heavier dumbbells.

Like rucking, running with a weight is magical because your body must fight to go straight and not tip over. This battle is wonderful for improving balance, proprioception (how your body knows where it is) and the strength of neglected cross fibers in muscles around the spine, so your spine will hurt less. Confession: I am no great runner. I am more of a trotter, but I hold my head and my dumbbell high for everyone to see.

But then: trouble. My formerly broken and then reconstructed foot was not ready for running. It was too weak. I’d had lots of physical therapy for it, but that was not good enough. That happens too often. Sigh.

I developed a bone spur at a break site. Wow does that sucker hurt when I hit it. The good news is that bone spurs can reabsorb.

To give it time to heal and to work my foot muscles, I have switched to running on deep sand, which is even awesomer because I can shame everyone running on the pavement while I get my pulse up to 160 or even over 170 during short sprinting intervals in the sand with my black 8-pounder.

Finally, reluctantly

I went back to ocean swimming once per week. Why, you ask, when I rail about how swimming is lame exercise.

Squishy water offers

No balance
No proprioception
No impact
No encouragement to improve form, function or posture

The upside is

Flailing with all four limbs provides a high calorie burn
Immersion in cold water tones the vagus nerve, a way to ease EDS suffering from autonomic (nervous system) misfiring. More information about the benefits of cold training on this podcast.

Honestly, I always wondered

What would happen if I didn't train for the Pier-to-Pier?

Well, turns out, it would be a long race of suffering.

Unacclimated to the cold water, my body was overwhelmed and struggled from start to finish. As I swam, I thought there must be a strong current! Nope, just my lack of training.

My swim took 15 minutes longer than usual, which is a long time. Still, it was a superhuman showing for someone born with very severe Ehlers-Danlos Syndrome.

But look at that! I swam in a straight line, a rare skill.

That comes from having equal strength on both sides of my body, something I recommend you work on if you are hypermobile.

Give your body the best foundation for coping with its confusing looseness.

Much of my musculoskeletal discomfort comes from uneven strength, overfiring muscles desperately trying to create stability of my hypermobile mess, and poor posture/bad form/sloppy joint use, whatever you want to call it. There is no surgery to fix those problems, just good physical therapy, lots of exercise with compassion and patience for yourself.

Get your body as strong as you can and learn to use it well.