I don’t think I’ll tell this story chronologically. That’s boring – at least it bores me. The details of how I got here over the last 33 years are often painful and frustrating. Rather, I will reveal bits of that story from time to time as needed. Suffice it to say, I was not diagnosed, and then misdiagnosed for a long time, and because of that, it was bad. People who have hypermobility have a very specific list of things they need to do and more specifically NOT do. I think I had been doing everything on the DON’T DO list for some time. By the time I got to my physical therapy office, I had years of injury built upon itself. This can really complicate the picture, especially when your flexibility causes you to be, well, inflexible. It can make it hard to get an accurate diagnosis (it did for me). My whiplash was so bad, I could barely move my neck for about 20 years, and yet, after one month of proper therapy, I could touch the back of my head to my back. (Sidebar: that’s not normal. And it’s gross, according to my friends). So don’t think just because you can’t touch your knees/shins/feet that you don’t have this. That’s not normal either…
The first lesson I learned in PT was that our posture was going to make or break us. My therapist proved it to me by testing our limbs – we couldn’t resist her muscle test at all, arms or legs. She rolled up a towel, stuck it behind our lower back, and “supported” it. After about a minute, she tested us again. Boom – stronger. Hypermobile people have weakness in their arms and legs caused by poor posture. It is simply harder for us to hold our spines up, because they are too loose. By adulthood, many of us have scoliosis that we were not born with. I’ve seen my MRIs: they’re a hot mess. The “migraines” I were getting were not migraines, but were cervical headaches caused by my neck falling forward and constricting nerves and blood vessels. Many EDS people have instability of their atlas/axis joint, which holds their head up. You’re head is about 10-13 lbs, and on a rubbery neck, that makes you like a newborn baby.
So, I became fanatical about our posture. I bought back rolls for chairs, for my car (you want your hips to be above your knees), lumbar support for the kids chairs at school (which everyone told me they would get teased for, and really, all of their friends think they are “so comfortable.”) I stopped crossing my legs (that was hard. It took me about a month to kill the urge)
I had to think about this stuff all of the time, and what was harder, remind the kids all of the time. That first summer was rough. When people want to change a habit, they need to really focus on it: it doesn’t happen on it’s own. The first 24 hours I thought “chin tuck, chin tuck, chin tuck…” and then it was just a few times a day I checked in with myself (chin tuck?) Now, maybe once a month, I say to my PT, “How’s my posture?” Perfect…it always is now. It became a habit.
My kids are a different story. They need me. They are not mature enough to understand the consequences of their actions. They love slouching on the couch, and lying on their belly, propped up on their elbows to read. They like to sit at the table and lay their head down when they are writing their homework, slouched over. And crossing their legs feels good. What can I say that convinces them not do it? The consequences are too far away…I bought pillow pets, pillows with arms they can read against, anything to make supporting their spine more fun. In the beginning I was very strict, and cued them all of the time. I took a lot of flack from well-meaning people for my Drill Sargent demeanor (I didn’t care. They don’t have to pay our price.) I have tried it all: lengthy explanations as to why we can’t do ___ anymore, brief one word barking (“Chin!”), non-verbal physical cues, (gently uncrossing legs, putting prop pillows in place, pushing necks into place). On bad days, I resort to, “You don’t want to turn out like ME someday!” I make a game out of it as much as I can. For example, you may catch my kids and I playing “Who has their core muscles activated and can take a stomach punch?”
Don’t judge me. It makes them laugh, it keeps them strong, and I can always take the hardest punch.
(first Published on Blogger on 3/29/14 2:34 PM Pacific Daylight Time)