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. 🙂
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
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.
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!
I think that the most misunderstood aspect of EDS is the most obvious one. You can’t see EDS. You can’t look at someone with Ehlers-Danlos Syndrome and think “oh yeah, I can tell she has that.” Being invisible makes it harder to understand for those who come in contact with a zebra. Understanding a broken arm is easy because you see the cast or psoriasis because you see the red skin. It is impossible to see EDS in everyday life. You can’t see the pain behind someone’s eyes without really knowing them and you can’t tell when someone is falling apart from the inside out. Because of this people mistake those with EDS as complainers and hypochondriacs. It is important to understand that everyone has struggles. Some are larger than others but all are important. I struggle with this. I struggle to understand why people can’t just stop and take a moment to think about what others go through but I know that if I was not going through something myself that I may not do this either. This is why I started a blog, to help others understand that just because I look okay does not mean we feel okay. We are literally living through a battle under our skin but smiling through it. Please, next time you see someone take a moment to understand them before you say something about them.
How do you feel about your current treatment plan?
Treatment plan? What treatment plan? HA! Right now, I do bare minimum to deal with the daily pain and dislocations. When I hurt, I rest the limb and try and distract myself from the pain. When I dislocate, I rest, ice the limb and sometimes take some advil or something over the counter. I try to avoid medicines as much as possible because of the damage they can do to your body. Other than ice, rest and some advil, I have no other treatments other than taking a hot shower to relax. I am doing fine without extensive treatment right now but I know that I will need more and more as life progresses. I think that it is easier for me to live with such a relaxed treatment plan because I am able to make the adjustments I need to deal with day to day life. For instance, at home I use a walker to help navigate and I sit when needed. I also have an amazing family that is there for anything I need. My brother is a pro at setting up my ice machine and I can’t thank him enough for everything he helps me with. I am happy that I am on a minimum effort treatment plan right now because I am young and I do not like the idea of being held back by the plan set in place for me to survive. We will see what the future holds but for now, I am content.
Another day, another post. So the question is…
What healthy habits have you adapted since getting diagnosed?
Since being diagnosed I have changed some of my habits but I haven’t changed tremendously. These have included… Continue reading