I have always wanted to run.
I’ve wanted to be a runner.
To outsiders, it appears to be something of a brotherhood… to insiders, well, I have no idea – I’m not on the inside.
I dream of running.
Literally. I regularly have dreams that I can run longer distances (I’ll run miles – long miles – and not be winded – and make it the whole distance – without hurting).
I bought a jogging stroller shortly after munchkin man was born, and fully intended to use it. I had plans to complete the C25K program, and seriously, honestly thought I would do it.
I checked in with my PT, whose response infuriated me, yet motivated at the same time: “Are you CRAZY???”
Then, just a few weeks ago, reality set in.
I’ll never be a runner; I’ll never run that 5k.
I’m realizing that, as I get older, my joints are a lot less stable than they were even a year ago.
I dislocated my wrist closing the car door.
I dislocated a pinky (in two different places) putting on Munchkin Man’s coat.
I dislocated my jaw eating.
I know that there will be those people that will read this and think, “she’s just lazy. why doesn’t she exercise? why doesn’t she make it her goal to run that 5k and, well, just DO it? why doesn’t she make herself stronger, make her joints more stable?”
It’s not that easy.
For me, exercise = pain.
For me, a lot of the time, exercise = injury.
Also – people with EDS are believed to have decreased muscle tone, which means that it is difficult to keep things in place (even more than it already is).
EDS is like that. I was given my “diagnosis,” which consisted of the rheumatologist writing the phrase “Ehlers Danlos Syndrome Type III” on a piece of paper, handing it to me, telling me to do some research, and walking out the door. When I requested my “notes” from this office visit (“Ehlers Danlos Type III, Hypermobility, if pain, then injury. Be careful.”), I was surprised – he hadn’t given me much information, but what he had given me, finally, was an answer. I had always known that there was something wrong, but of course, in the back of my mind I thought it was all in my head. I wondered if I was a hypochondriac, if I was just over-sensitive. But this was eye-opening. There is a lot of joint instability, pain, injury, and therefore uncertainty with this condition. I didn’t realize just how difficult it would be to find a good doctor that could explain to me what everything meant (EDS is a connective tissue disorder – the connective tissue I have contains damaged or incomplete collagen, and that’s irreversible). I didn’t know what it would take to find a doctor that was willing to educate him- or herself to know how best to treat me… I’m still looking for a good primary care doctor to take care of my everyday needs, someone that is willing to learn or that already knows about EDS.
After my quack diagnosis from the “if pain, then injury, be careful” doctor I went down to Boston for a second opinion (with direction after the fact that my primary care doctor would continue my treatment after I left). It was the right choice, because they were able to tell me what to watch out for, and how best to keep myself from hurting myself (splints and braces). Gentle exercise (walking and swimming), nothing high-impact. And best of all – one of the real reasons we went down to see the Geneticist in the first place – it was safe to have a baby. It would mean that I would be considered high-risk and I would need more close monitoring to be sure I wasn’t going into premature labor, but I would be able to carry a child.
We have had our (first) child; I had an uneventful pregnancy and carried to 39 weeks. Throughout my pregnancy, from week 13 through week 30, I was closely monitored to ensure I would not go into labor early; this meant monthly ultrasounds and extra genetic counseling. I got to see my baby more before he was even born, and I knew I was healthy and progressing normally.
One of the risks with EDS is the chance of passing it along to children; there is a 50% chance is passing it to my children because it is an autosomal dominant gene – you only need one copy to have the condition. It’s still early, but we will likely know by the time he is in early adolescence whether munchkin man also has EDS. Because of the nature of the beast, there’s no GOOD genetic test right now for type III, because the gene has not yet been isolated. The test is mediocre at best – a 50% chance of accuracy – and because it is still so new (and not yet very accurate), insurance won’t cover it. It’s rather expensive.
Growing up I was rather active – I played softball and soccer, and danced ballet (even making it en pointe for a full year before the pain in my knees made me stop – well, that and my orthopedist telling me that one day my knees would just go. Full disclosure – the orthopedist was right – they just started to give one day, walking across the road). Even at the height of all my activity, I was in constant pain and because I didn’t know any different, I thought it was normal. I pushed through it. I didn’t realize how much harm I was actually causing to my body. Since my senior year of high school I have had 4 joints operated on – both knees, my left shoulder, and my right ankle. Both knees were essentially rearranged and fixed to make them more stable (they no longer give out with no warning); my left shoulder was repaired after a fall, though it was not successful; my right ankle was repaired after I turned it standing (see this, this, this, this, and this for details). I still have extensive pain in all of my joints – especially the surgically-modified ones – and my hands are getting worse every day.
I love, love, love to crochet. I recently finished an afghan for my new niece (at the beginning of October), but because of the pain in my hands, have not yet started my next project. Due to the progressive nature of EDS, I shouldn’t be surprised; however, because I am still relatively unfamiliar with everything that comes along with this diagnosis, I know that I have a ton of research still to do before I understand it as much as I should. I recently picked up this book by Dr. Brad Tinkle, which multiple people have recommended to me. It should be arriving soon.
The pain in my hands is exacerbated by the fact that I sit at a computer all day; I also enjoy writing (with a pen and paper) and do it when I can. I keep a journal (both one for myself and one for L), and hand-write each. Because of the pain that keeps increasing, I notice more and more how much my fingers hyper-extend. I try not to let them, but it’s rather difficult. I noticed on my drive home last night that even while driving they extend in ways they shouldn’t – in ways that cause me intense pain. I have been looking into these - they keep fingers from bending in ways they shouldn’t – and have schedule appointments with an occupational and physical therapist; she was actually the one that pointed me in the direction of rheumatology in the first place, and suggested I find out if I did in fact have increased hypermobility. Hopefully she will be able to point me in the right direction of things I need to do to ensure that I don’t hurt myself more, and perhaps even help stabilize my hands and fingers.
I will never be a runner. I will never dance ballet again. I will never be able to play basketball (not that I ever could anyway!), or climb a mountain. It’s not recommended, it’s not smart, and the amount of increased pain and daily difficulties it causes me is immense. I apparently hide it well. I’m lucky – I have a very, very supportive husband. He gets it. He sees me living with it day in and day out – and does not try to push me in ways that he knows would hurt me.
I may love the idea of running, but I will never, ever BE a runner… unless you count running in my dreams.