As an infant, I walked a little late ( as did both off my daughters). I am told I did an army crawl with my belly on the ground, rather than a full hands and knees crawl for a long while. But once I finally got on my feet, I moved. Even though I was a bookworm growing up, I was always an active child. I read constantly, but often in odd places, like the top branches of a tree in my grandmother’s back yard.
I think it started with the exploration walks my mom used to take me on. When I grew a little older I rode my bike on grand adventures ( when you are 6 a few blocks on your own is a grand adventure- by the time I was in middle school, I was biking around the county). When we were not biking, we were walking. Then there was yard work. You know.. weed pulling, lawn mowing, tree re-arranging ( what? your dad did not have you digging up and re-arranging the trees in the yard!?). There was the swing set and pick up softball, sledding and ice skating ( which I was never much good at, but enjoyed falling and ankle twisting and drinking hot chocolate…) There was climbing trees. Wandering through the woods- with a gaggle of cousins, or alone. All of it built muscle. Built strength.
There were a few early years of Ballet that were traded in for horseback riding in elementary school.
I was a swimmer. Not competitively, but took to it like a fish. I raced through swim lessons, and pretty soon, I was teaching them myself.
I twisted ankles and knees. I always had cuts and scrapes and bruises. But that seemed natural. I sprained things, and recovered. But I never stopped moving. I had a bunch of growth spurts and was a complete klutz. I broke nearly everything breakable in the house. But that did not slow me down.
Then I hurt my knee more seriously. I tore my medial meniscus and had to have it removed. This was back in 1976, before arthroscopic surgery. I was down hard for a while. Even then, I bounced fairly fast. I was a demon on crutches. But some things were never the same. I was off and on crutches for most of high school and a few times in college. I played Volleyball for a while in High School, but often ended up with small injuries. I played tennis in gym ( for one day) and ended up with the worse case of tennis elbow the doctor had ever seen. We all wrote it off as me being overly enthusiastic. I dropped a jar of applesauce and broke a toe. Life became a roller coaster of activity ( mime club, marching band, swimming, walks, biking) and impaired mobility ( injury and recovery).
I am now convinced that all of this early activity built critical muscle strength and was a life saver. Yes, I had pains as a child. I had “growing pains” that sent me to tears at night. I had mysterious wrist pains that hurt so badly that we ended up inn the ER off and on for most of middle school. I had an endless litany of small injuries and aches. But I read stories of other EDS’ers and I know that things could have been so much worse. Honestly, we just thought this was what childhood was like. And for lots of kids, it is. And I am not so sure that is a bad thing.
In college and grad school, I walked. A LOT. I danced a lot. Once I had kids, I was carrying babies, chasing small ones, and taking them on exploration walks. They grew, and I got a full time job, but it was in a manufacturing plant, where my “desk job” really meant I walked the plant a lot. it was only 10 minutes from home, the driving was minimal. I danced. I planted gardens and tended them. I ached, I injured, just like the rest of my life- but this was normal. I had learned how to successfully eat anti-inflammatory meds when needed long ago. I sometimes had to get off my feet, because my knees gave out. I danced more.
I was strong. People were always surprised that I could lift almost as much as a man. I accidentally created a legendary story by spending an afternoon tossing hay bales with a baby on one hip. One thing about this collagen, is that when you move and use them, it allows muscles to grow very strong. And that strength happens pretty quickly.
My job shifted and changed, became more global, more phone calls and coordination. But I could work from home. I spent lots of those phone calls on my feet, pacing the floor. I was still moving and strong.
Then I switched jobs. For the first year, I still worked half time from home and it was fine. Then the job needed to shift. I needed to be onsite all the time. I drove 90 minutes twice a day to get to the office. When I was in the office, people came to me, rather than me going to them. I was sitting at a desk more than I ever had. This started in July of 2010 and went through the end of September. I was stressed, not sleeping much and moving much less. I came home, I was exhausted, I did less. I had started on a downward spiral without even knowing it. In August I developed a superficial phlebitis in my left leg, I was on my back with my leg in the air. Moving my daughter into her college dorm, I had trouble hauling boxes up and down the stairs. Walking back and forth across campus, my knees and hips were painful and going out. I was gimpy.
At the end of September, early in October, I got sick. A respiratory bug. I fought it off, I thought. We had parents weekend I walked around campus again. After a bit of walking, I was in pretty constant pain. I pushed through it, but was glad every time a chair came in view. I went back to work for a week, driving, sitting and my respiratory bug was back. I could hardly breathe, the doctor thought I was getting pnuemonia. I had rattly lungs and was seriously pale. I laid down. For almost 10 days. Near the end of the 10 days, when my congestion was starting to feel better, I tried to get up. And almost fell down. Lack of movement had finally taken it’s toll. I was instantly transformed. I was so weak, I could hardly breathe. I was weak everywhere. Legs, arms, back, core, neck, diaphragm. It got worse and the doctors were sure I had Myasthenia Gravis. Lots of testing and the recommendation was- do what you can and when you are tired, rest.
I got worse. My vision went double. I got progressively weaker until it bloomed into pain. By Thanksgiving, I was in constant chronic pain. My awesome neurologist battled forward with me, but nothing made a difference. Honestly, there was more than once I was certain that whatever was wrong with me, I must be dying. I could feel my body deteriorating under me. I have already written about how I finally got my EDS diagnosis, so I am not going to re-cap that here.
Once I was on lots of anti-inflammatories ( at a level that I do not recommend to anyone). I started moving again. It was slow. I have an old Pilates DVD that has a series of 10 minute workouts on it. I started with the one that used to be my warm up stretching.. all on the floor. And I could not do it. I ended up in tears, it hurt so much to try. The next day, I put it on again. By the end of the week, I could get through the 80% of the 10 minutes without crying and pain. At the end of two weeks, I could do the whole 10 minutes and was adding a second segment.
I have continued on like this ever since. I yelled. I screamed, I grunted and moaned and cried. I really do not know how those of you who were told by your doctor to join a gym did it. Most days, After the workout it was all I could do to get up off the floor. I never could have driven home again. Some days I would workout, then roll over and sleep for 30 minutes or so. Personally, I would not have been able to curse and yell back at the instructor if it were a real person, like I did to my DVD. If I had not been able to yell back, I would have given up.
I learned early on that ice after the workout helped significantly. At first, I would do 20 minutes of workout, then run out the front door in my shorts and work out bra, lay in the snow for 2 minutes, come back on the couch and sleep for 30 minutes. I have progressed to cold packs and rarely have the need to nap any more.
I am up to 35-45 minutes of workout 5-6 days a week. I am still doing Pilates and have added a bit of upper body weights, because my shoulder and arms were not improving from the Pilates. I even occasionally add some wrap on ankle weights when I do the floor exercises to push my legs a bit more.
My pain is less ( not gone, it never will be). I am getting stronger ( but still have a long way to go to get back to where I was 2 years ago, even).
I have learned that mornings when I am feeling weak, tired. That is the most important time to work out, my muscles are needing a strength boost. Some days, I still yell back at the DVD, bur I can do all the exercises in the routine now.
Yesterday, I had to go over to my old office and drove 90 minutes each way. I sat in a chair for 5 hours straight and when I came home last night, I was exhausted. This morning my shoulders and left leg hurt more than they have in about 3 weeks. I know I need to move. This bendy body was built for motion, to be active.
When the movement continues, I get strong. When the movement stops, I am crippled.
The choice seems simple when you put it like that.