How Often Do You Dislocate?

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. 🙂

 

“Walk it Off”

Everyone has those family quotes and inside jokes. Well in my family we say, “Walk it off.” I can not count the amount of times I have heard this. Whether it was being screamed at me from the side lines of a soccer field, or when I stubbed my toe at the house, this could always be heard. It originated when
Continue reading

A Butterfly on my Knee.

On my Instagram page (eds.everydaysuccesses) I posted a picture of the butterfly tattoo I just got a couple of days ago. I promised an explanation about the butterfly and ensured you that it had to do with Ehlers-Danlos Syndrome and my journey. So if you are interested here it goes… Continue reading

“What Keeps You Going?”

Recently I was asked why I work so hard to maintain a normal life. At first I thought that it was such a weird question. I thought, “why wouldn’t I have a normal life already?” and “who doesn’t want a normal life?” Then they restated the question, Continue reading

My Worst Dislocation Experience…

I hate sharing the personal and embarrassing stories but I think that it is important to share the things that we do not like talking about. It is hard to imagine the pain we go through physically but mentally there is some pain too. Feelings of not being able to do things and feeling guilty because friends change plans to incorporate you. These feelings stay below the surface majority of the time until something happens… Continue reading

Image

How do you describe EDS?

Recently I asked my Instagram followers to give me a one to three word description of EDS. I took the answers that I got and put them into a word cloud. I am very happy to present the descriptions of EDS provided by those who know it best. Screen Shot 2017-09-12 at 12.04.33 PM.png

Leave me a comment: Comment and let me know your one to three word description and if you liked this post comment and like to let me know and I will do more like this!

Interview of a Friend of EDS

We all know that Ehlers-Danlos Syndrome is hard on those who have it but have we thought about those around them? Obviously it is hard on family but what about our friends? Think about it… These friends have seen some seriously weird stuff. They did not ask for the random dislocations in the mall or the numerous surgeries and having to send “hope your feeling okay” texts, but they do. They deal with all of this with such elegance. I am so thankful for all of my true friends that have stuck with me through it all. I asked some of my closest friends to answer a few short questions about having a friend with EDS because I wanted to know their true opinions. I sent them questions so they wouldn’t feel pressured to be nice if I asked them to their faces and over the next few weeks I am going to be sharing their answers. Today is the first. This is from my friend “M”. She has been a friend since high school and has been so supportive of me and anything I have wanted to do. This is what she had to say…

Explain EDS in your own words. 

 EDS is something that is widely unknown and invisible to someone who doesn’t know what they are looking at. Ever since learning what it is I am much more aware of what it is and what it may look like.

Does EDS scare you?

No. What scares me is my best friend being in so much pain and I can’t do anything to help.

What’s the hardest part of having a friend with EDS?

I guess the hardest part would be wanting to be able to understand what she is going through but knowing I never will. I only know what she tells me and I try my hardest to be understanding of what she is going through.

What questions do you have for a person with EDS?

My only question is how on earth do you find the strength to get up everyday in such pain? I definitely don’t want you to not get up, but I really truly admire you.

What do people need to know about your friend with EDS/people with EDS in general?

Don’t let this Invisible thing define her. She is an amazing person. Point blank. She is my hero. She loves with her whole heart and she is someone whom I can most depend on. I’m sure  anyone else with this invisible “beast” can be thought of the same way. They are not their “beast.”

Give the most memorable story you have about your friend and their EDS.

The most memorable time I have with tori is when she first dislocated her knee in class and then the many times afterwards. That first time was scary as mess for me because all I saw was the pain in her face and I didn’t know what was going on. But once I learned, I was the one who would thwart others from being too nosey or disrupting class. I knew that what she needed was to be left alone. Of course unless she told me specifically that she needed help.

Finally, I just want her to know that no matter what I am always there for her. Always. She is my sister and I love her.  ️

*I have got to mention that this is the whole truth. “M” would definitely be the person to say, “What are you looking at?” or “Mind your business” if someone was being noisy or rude when I would dislocate and many times I would have to control her when someone would say things like, “she is faking” or “she just wants attention”. I can’t thank you enough for all the times you have been there for me.*

I love you too and I will always be there for you (even if I am in pieces!).

 

If you have EDS and you wonder about your friends and family. Send them these questions. Tell them you want to know their true opinions of you and your “beast” (sorry M, I am stealing your word). You will be pleasantly surprised that everyone in your circle is also in your corner, pulling for you. Then share your experience with us!