Start Where You Are

My physical therapy team is amazing!  I found them long before my diagnosis when I kept getting injured during exercise. I hobbled into the office for the first time in a boot and on crutches with stress fractures in both shins from running through shin splints. I've cried a lot of tears on their tables! 

Many times we've talked about how my body responds in ways that aren't necessarily expected.  One of the fun aspects of EDS is that our Zebra bodies don't heal in the "typical" patterns practitioners are used to seeing. My healing, or lack thereof, made no sense to any of us for a really long time.

For example, when one gets cut badly enough to require stitches, that person would go to the doctor/ER, get stitched, and return in a certain number of days to have the stitches removed. When a person with EDS cuts themselves badly enough to require stitches, we go to the doctor/ER, get stitched, then have to constantly monitor those stitches because they might not stay tight - our skin is super stretchy (which prevents the wound from healing) - or they might tear right through our thin skin and have to be re-stitched or cauterized or who knows what else! 

Bottom line... my body usually doesn't tolerate the general standard of care. What felt amazing on the PT table, would often leave me in bed for the subsequent three or four days because of the rebound effect, which can trigger a bad vertigo spell. It took me years to work up from one wall push-up with my toes inches away from the wall to a set of three "girly push-ups" (knees bent) as part of my strengthening regime. Literally years. I say that this wasn't always the way, but when I really think about it, I used to push too hard too quickly and end up injured... so maybe it was!

At one point, soon after I had to stop working, I thought I'd found the Holy Grail of recovery protocols for EDS'ers. I bought the book, brought it in for my team to review, and learned very quickly that it is not the best protocol for MY body! Like some types of yoga, which I love, it required long holds and advised that the person not move forward in the protocol until that person can hold each position for three minutes.  Three MINUTES!!  If I hold any yoga pose for longer than 10-15 seconds, it may feel good at the time, but I will pay for it for days or even weeks afterward! I was determined though.  I spent a week trying to hold the first position for the recommended 30 seconds each night... and spent three weeks flat on my back with the world spinning. I put the book away. I came to terms with my disappointment in "the magic cure." I accepted that my body rarely fits into the "standard of care" category. I accepted that I will never run again.

I went back to the drawing board. C and I had a conversation while I was on the physical therapy table and the lightbulb finally clicked. I learned what "start where you are" really means. It literally means that you start. If you can't walk for 10 minutes, or even 5 or 1, you just start.  I set a goal that someday I would walk a 5K again. I started three years ago. I'm not there yet.

At first, I couldn't walk to my next-door neighbors' driveway, about 100 yards away.  So, twice a day, I walked from my back door to the back of my yard and back.  It took me no more than a minute each time.  I was shaky and hyperfocused on not getting dizzy I walked slowly and purposefully, knowing that I could lay down if I needed to and that I would be safe... knowing that the vertigo would eventually ease enough that I could get back to the couch.  There were days when I had to wait long past my "scheduled" walk time because I was too dizzy, but I kept my commitment to myself. I will walk.

At first, I had to be really militant and scheduled about walking (structure and schedules are NOT strengths of mine!). Since I made this commitment to myself three years ago, I've been able to be less rigid, because I've developed the habit and my body almost always feels better after I do it, so now I crave it.  I rarely give myself an entire day off, but I will occasionally allow myself to bypass one of my two daily walks.  I also have found a way to walk inside when the weather is just too miserable (torrential rain or temperatures below 15 or above 85). I have little tricks to add extra steps in case I'm a little below my step target for the day and I set a target that I can reasonably expect to meet.  When I started, it was 500 steps a day... for real!  Now, it's 5,500 steps a day.  I'm hopeful that I'll hit 10,000 steps a day consistently at some point again. I'm doing it slowly though. I'm listening to my body and I work hard to overcome my natural "all or nothing" mentality.

I realized that I walk every day, not because I want to (there are more days than I can count when I absolutely DON'T want to!) or because someone has told me to.  I walk almost every day because the pain of not doing it (I'll end up flat on my back in bed, dizzy 24/7 again) far outweighs the pain of just doing it.  It's not will power. It's not loving exercise. It's because I love me.