I would like you to take a second and imagine you have never heard about EDS or hyper-mobility syndrome. Imagine meeting a zebra and hearing all about Ehlers-Danlos Syndrome for the first time. Now for some of you this may not be hard because you recently heard about it but for those of us with it, it has become like second nature for us. Just imagine someone casually mentioning that they dislocate. They literally fall apart like Mr. Potato head. Oh, I have A LOT of questions for this person.
When I tell someone about EDS, the most common questions I get are, “How often do you dislocate?” and “Have you dislocated while you were with me?”. I love when people ask questions. It makes me feel like I am doing something good to share what I and others are facing. So, please ask away. But to answer your questions, I don’t dislocate on a schedule. I can not tell you in the morning how many times I will dislocate that day. I have learned to assess the damage and guesstimate the number of dislocations I can expect but I can never tell. On a good day, I will dislocate my knee around 2 or 3 times. I know what you are thinking, “THAT IS A GOOD DAY?”. Many of you may say that because it is such a low number compared to your dislocation count and the other part of you guys reading is thinking, “this girl actually losses control of a body part and it dislocates DAILY!”. These are my good days and I take them as there are. I am thrilled to only have 2-3 dislocations in a day but my bad days happen to. Bad days come in one of three fashions. There are bad dislocation count days, there are body part dislocation days, and then there are those days that are both. Those are similar yet very different. I’ll explain them briefly.
Bad dislocation count days: These are days where one body part dislocates many times. The pain is mostly centralized to one body part. The one part will dislocate more than a few times and continue to grow the pain levels.
Body part dislocation days: These days are defined by the number of body parts that dislocate in that given day. The pain is dispersed throughout the body and radiates from each piece that has dislocated.
As you can see, it is very hard to answer the question of how often I actually dislocate. I guess it all depends on the day and which piece we are talking about. But to give you a number, I’ll guesstimate. On an average good day, about 2 to 3 and on a bad day upwards to 10 or more. I know large numbers are scary, especially when they are two digits but honestly, I have it easy. There are many people out there with worse and I am doing just fine. I am enjoying myself and celebrating my EveryDay Successes.
Tell me what your good and bad days are in the comments. 🙂