The following is a list of questions answered by my fiancé. I asked him to answer questions related to what it is like to have a spouse with EDS and have not changed any of his answers. I hope that this can help give insight into how others affected by EDS handle it and what their lives are like. I am so thankful to have someone as supportive and loving in my life and want to thank him for putting up with me and all my zebra tendencies.
- Explain EDS in your own words.
EDS to me is a chronic “invisible” disease that limits the mobility of one’s body from accomplishing certain everyday obstacles.
- What is the hardest part about having a spouse with EDS?
I think for me, the hardest part is keeping in mind about how much we do together in a single day, whether it is going to the grocery store, hanging out with friends, even long car trips, makes it difficult for her at times, and that’s something that I always have trouble with.
- What is the most rewarding part about having a spouse with EDS?
The most rewarding part about Tori having EDS is that I have gotten to see over the last 4 ½ years, how strong she has become. Even though she is in constant pain 24/7, she never lets it get the best of her.
- In your opinion, what is the hardest part of your spouses life with EDS?
I think the hardest part about Tori’s life with EDS is that she is in constant pain. The smallest tasks can sometimes be almost unbearable for her to get through, but I’m not sure how she does it, she always seems to reach her goals without even slowing down!
- Does having a spouse with EDS differ from having a spouse without EDS? How? Why?
Yes, it does differ having a spouse with EDS, due to the fact that it is so rare or invisible if you’d rather. You can’t see it, so you never know how someone with EDS is feeling at the time, unless you really understand what EDS is.
- What are the challenges that your spouse faces?
She experiences different challenges daily. It can be getting out of bed, taking a shower, picking something up off the floor, or even holding her cat.
- How do you think it will affect your future together?
From what I know about her case of EDS, is that as it progresses, her ligaments will slowly begin to get stretchier and stretchier to the point where she may have to begin having surgeries to fuse her body parts into place, but no matter what, the more that we learn about it, the easier it is to plan out our day to day routine(s).
- Does it scare you?
Excuse me, but yes, it scares the Hell out of me at times. I’ve been there for good days, bad days, and worse days, and it’s never easy going when it’s a bad day, let alone a worse day. A lot of times I feel like I am helpless when she has dislocated or subluxed. I have no idea of what pain she may be in or what I can do to make things better. Luckily she is able to coach me through a lot of times what she needs, and what I can do to help her and make her more comfortable.
- What are you most proud of when it comes to your spouse having EDS?
How strong minded, dedicated, and motivated that she is. Always going that one extra step to make it through the day, hurting or not, always helping someone else in need, and how amazing of a person she has become despite her disease and discomfort.
- Anything you wish to add?
(Personal Message): Tori, you are truly and inspiration and have played a huge roll in helping me understand this invisible disease that you suffer from on a day to day basis. I can’t imagine what you go through, only what I see for myself. You are one of the most amazing people that I have ever met, become friends with, and have had the chance to get to know you on a level that many others haven’t. You are a living superhero. No matter how bad you may be hurting, you continue to strive to make a difference in other people’s lives. Always putting others before yourself, and helping them make the best of their situations. I Love You!!
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.