Stand Up Straight!

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. Jen 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.

Normal  Cervical Spine

My cervical spine, straightened by chronic whiplash...yuck

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 work station. I have two pads on my chair, I prop up my iPad so it is at eye level and I don't strain my neck looking down, and use a remote keyboard so I can support my arms on the table to type.
When I need to use a laptop, I have it up at eye level, and I  go back and forth from sitting to standing, but it doesn't support my arms. I won't buy a lap top again. When I next upgrade my computer,
I will make sure my monitor and my keyboard are separate...

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.

Why this? Why now?

I don't need one more thing on my plate. So when I told my husband that I was starting this blog, he gave me that look. "And why are you adding this right now?"

"My physical therapist made me do it." She's always making me do things that I should do but don't want to. That's her job, right? I don't think he bought it.

The truth is, she has been nudging me for a while to document all of the things that I have learned and done over the past two years as I stumble (sometimes literally) through life as a newly diagnosed person with Ehlers-Danlos Syndrome and the mother of two children who also have it (yup.) I am an aspiring writer, and as many of you living with chronic issues know, there is never enough time to meet the goals that we have set for ourselves because of the many setbacks caused by injury, pain, or the demand for extra rest. But this blog idea has scratched its way into my brain, and I can't get it out now.

I had my reservations for many reasons. I am normally rather private about my health, choosing carefully the moments and the audience for any reveal. Throughout my life, I have functioned on a high level by focusing on positive things and not dwelling on my pain or problems. I don't want people to associate my name with illness or disability, or to see me as the "one- legged marathon runner." And yet, living on that island with few visitors did not do me a lot of good when I found myself in a three year stretch of cervical instability and daily, debilitating headaches, and needed to rely on the proverbial village to help me with my kids. I am learning that it is OK to let people know - that it is not the same thing as whining.

Here is what my blog will be: An often humorous, and hopefully informative diary based on my family's case study. Learning that you are hyperflexible, and that it has caused your body to be very weak, is a weird concept. I am two years in, and I still don't always get it. My eldest is 11, and she is as sharp as a tack. We often make jokes about how we are flexible, so we have to be flexible (plans are what you make, Life is what happens...) Another one that we came up with is, if we were a business, this would be our cheesy tv commercial:

Our flexibility is our strength!

Hey, it cracked us up, and I love that my kid is already this ironic. She's going to need it.

Here is what my blog will not be: I am not a doctor or a physical therapist: I cannot tell you if you have EDS. If you identify with the symptoms that I describe, please go seek the advice of a medical professional who is familiar with hypermobility. A good place to start is the EDNF website.

OK, people. Let's do this.