The thing is I haven't even told this to my own family yet. My parents and my friends don't even know about this. Mostly it's because I'm afraid of the reaction I might get; I feel as though if I told them this the stunned reaction and disbelief I might get in response will be too big of a bridge for me to cross. Even the slightest bit of hope that may result from them knowing this might be too much for me, too much for them. Okay, so here goes: sometimes I am able to tell when a fracture will happen. There, I said it.
Part of the frustration with having OI is that fractures occur so unexpectedly. But imagine the slightest relief we and our families could have if we KNEW ahead of time when a break would occur. Maybe we could be more careful that day? Perhaps we could call the doctor in advance? Prepare the necessary splints or slings? Brace ourselves for the pain that we will experience? But would anything change? No. Would the fracture still happen? Yes. I guess these last two questions are why I have kept this observation to myself. What difference would it make if I knew or didn't know? But figuring out those questions is an individual decision, a personal journey. What I really wanted to write about was HOW I know something bad will happen.
It's the bone pain that clues me in. It's a different bone pain from having spent a day doing too much physical activity, or the slow dull pain that comes with a rainy day. That kind of bone pain kinda hangs around inside of me, hopping from one corner of my body to the next - just reminding me that pain once in awhile is a symptom of OI, that at times it's okay to spend an afternoon laying in bed playing games on my iPod. But the OTHER kind of pain, the kind that I can pin point to the moment a break is just about to happen - that's a totally different creature all by itself.
For me that pain usually starts and hangs around in the same area for the entire day, or at least until the fracture finally happens. I imagine it to be like the moments before a branch finally loses the battle against a blustery wind, it'll curve and try its best to boomerang back, but it'll lose despite its noble efforts. The most annoying thing about this kind of pain isn't that it hurts necessarily, it's that I'll be conscious that it's there for the entire time. If I could describe the pain in terms of a universal experience, I guess it is similar to the pinch or puncture of a needle into your arm when you're getting a shot. Except transfer that pinch internally, put it inside of you for an entire day, lay it on top of your arm, your femur, or lower leg.
It took me a good number of fractures before I figured out the correlation between experiencing that pain and when a break would occur. At first I didn't want to believe it. And then I told myself that it was just a coincidence. But when it happened more than a few times I just kept it to myself, like holding a friend's surprise birthday party on the tip of my tongue until the big reveal occurs. The fractures would happen like any of my other fractures happen, nothing out of the ordinary or different about them. For the fleeting few seconds when my mind manages to get distracted from that pinch inside of me, that's when the break will sneak up and snap me back to its attention. Remind me: hey, I'm the real priority here. Pay attention to me! And then for a few hours I will, I'll go through the routine that my family, friends, and I know all too well. But when everything is all bandaged up, and as I'm lying there waiting for the fiber glass cast to dry and I think alright body - maybe you've won this time...I let myself accept the fracture, understand that it was bound to happen and then pick up and move along. I race on to the next experience in life before the next pinch gets there before me.
Forecasting Fractures:
- I'm not so sure that there are any suggestions I can offer here that would be different from managing any other fracture. Like I mentioned above, these hunches are only about 45% accurate for me, and they might not be true for every person with OI
- One thing that I AM thankful for though is that instead of spending an entire day in my room when the pinch occurs I go about my routine as normally as possible. I might not be as active that day but I refuse to let anyone else in on the secret my body and I share. It's a communication that I protect to the best of my abilities.
- When I do get these hunches though, I will admit that when the fracture occurs I am more "mentally prepared." It's like if you were at the doctor's and they stick you with a needle before telling you it would be more shocking and painful for you than if they said "1, 2, 3, and..." If there's any 'bright side' to this situation it's that I am ready for the inevitable.
- If you're a parent or a friend of someone with OI, know that somethings will be difficult for the person to explain. And maybe we won't want to explain because we're afraid you might not understand, or that you'll totally become unnecessarily worried. We KNOW and trust that you do love us, and that you want to take the best care of us as possible - but when these secrets are kept from you, know that it's not out of selfishness or stubbornness. It's just that somethings are hard to grapple, and it may take years or decades before it will surface on its own.
- I continue on.
I didn't know that other people with o.i have that feeling too. I used to get that feeling like I was going to break a bone a lot when I was younger and every time I got that feeling a close call would happen and I would almost get hurt. I always looked at this as God's way of telling me I'm about to break again and to get prepared. After a while of failing to prevent getting hurt when ever I got this feeling I realized it can't be prevented and beating myself up about it won't help. Thank you for posting this thou, I always thought I was the only one that had a feeling like this but now I don't feel so alone :)
ReplyDeleteI never really "felt" or "knew" that a break was about to happen, so I don't know if this is the samething but I did have this weird thing happen with my eyes. It was almost a way to let me know that a break could possibly happen. My sclera would (they still do sometimes) range from white, blue, to a dark purple-blue. But when I was a kid they would change from light to dark and when it got really, really dark, I almost always broke something. So whenever they were dark, my mom would always tell me to be extra careful that day because of my eyes. Now, I didn't break everytime they were dark but it did happen enough to use it as a precaution. lol.
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