So recently I found 29 quotes from people with Ehlers-Danlos Syndrome explaining what it is like to live with EDS. I am going to start posting them periodically to give a voice to those with EDS and try to give you guys more than just my opinion. This is the first of many to come.
First, I want to say "oops" because I haven't posted in 5 days. Yikes. I didn't realize it had been that long. I have been packing and moving and unpacking and working. Needless to say it's been crazy. BUT I think we are done (for the most part) so I can focus on EDS-EveryDay Successes again! Yay!
I wanted to share some of my moving grief with you guys. So moving is rough on anyone right? You're tired and sore and probably cranky. Sound familiar? Well with EDS, I find it to be much more. I can't do much on my own as far as lifting large amounts of weight or even awkwardly shaped objects without risking dislocations. This is extremely frustrating. My poor brothers and fiancé had to do the heavy lifting and I'm sure they are wore out. I hate not being able to do for myself and I hate it more having to get someone to do for me. Then comes dislocations and subluxations. I can't even count how many times I lost to my knees in the last few days. It's been rough. But you know what? I didn't stop. As much as I wanted to, we did it. I am very proud of that. There are people out there who are proud of climbing Everest or being able to run faster or longer than everyone else and I'm very content knowing I moved my stuff across town. Seems silly but it's not. It's my reality.
There is one more thing I wanted to mention. It is the bruises. And you are probably thinking, "what is she talking about?" With EDS it is much easier to bruise and this is evident today. I looked at my legs and I have 6 random bruises of a decent size and nasty color scattered all over my legs. I looked some more to find 2 on my back and 3 on my arms! What the heck? That's 11 for those of us who don't do math! I haven't the slightest clue what made these or why I have them. I know it was moving but no idea what actually caused it. Oh well. It's been a rough week but I'm happy to be done with it, even if I have he marks to prove that it has been filled with EveryDay Successes!
Well guys, I decided to go camping with my family and it’s been rough. First we went to the aquarium and I dislocated 3 times while there. The next thing that injured me was feeding the ducks. Yeah, you read that right. I threw some bread to some ducks and subluxed my shoulder!!! What the duck? Well, since then I have subluxed my shoulder one more time and dislocated my right knee two more times. It’s been rough but I’m still having a good time. It’s been a good time other than the pain! Looking forward to some more fishing! (Just got to get someone to cast for me!)
The question of the day is, “What is your biggest pet peeve about trying to explain EDS?” Oh this is going to be fun. Before I start please know that I mean no offense to anyone that has done this. I understand why you may and I appreciate you but it does hurt my feelings a bit.
My biggest pet peeve related to EDS (Lord knows I have a lot in general) is people saying “oh yeah I have that too” or “yeah, but I have insert minor issue, which is worse.” It really frustrates me to no end for someone to act as if what I am going through is nothing. I know what I deal with and how much it hurts and how crippling it is. It is crazy to me to think that someone can hear multiple dislocations of all major limbs and think that it can’t be worse than their ailments. Now, I know that people out there have it way worse than me. I would never try and say someone with a life threatening disorder has it better than me. I feel for people and I hate what others are going through. We all have our own struggles but it is important to respect and listen to understand each other.
I know that it says one but I’m going to discuss two. Another thing that I (and other EDSers) don’t like is when we say we are stretchy and someone says, ”me too!” and shows us that one finger that they are double jointed in. And guess what. That conversation always ends in, “well maybe I have what you have, because I am bendy!” -_- Being double jointed or extremely stretchy in one spot is not means to jump to conclusions. I get that people are trying to relate but we spend so much of our time dealing with dislocations and stretchy joints that we don’t want to spend our free time looking at more.
Please know that if you have ever done any or all of these things, I understand. It is hard to understand what is going on and you have probably never experienced a dislocation. It’s okay. I understand you are just trying to relate. To be fair, I only dislike these things because I envy those who don’t have to hurt and dislocate. I envy the freedom you have and it makes it hard to hide my jealousy when these situations arise.
Well it’s that time again. Day 12 is here and it wants to know if my related diagnoses came before or after my EDS diagnosis. Well if you have been reading all along then you already know the answer to this.
Take a minute and quiz yourself. I’ll wait…
So we all know that our parents know best and if you don’t know that yet, you will. It’s no secret that parents are some of the most important people in a child’s life. Parents are there to kiss all the boo-boos and give hugs when you get straight A’s but have you ever thought about how it makes them feel to do all these things? Take a moment and consider how it must feel for them. Now take a moment and consider a parent of a child with EDS. Do you think it is different? I decided I wanted to know.
This is a story all about how my… best friend handled me during my last surgery.