So I get asked a lot how I'm doing.
This video (minus the kids) is a pretty decent explanation of what it's like being someone with EDS.
I was lucky in some ways when I was younger as respiratory and immunological and GI issues kept me from being an athletic kid (I still did enough to do some permanent damage to my body, figure skating and horseback ridding mainly). I wasn't able to run and jump like the other kids and everyone noticed pretty early on that my fingers dislocated if I were told to catch a ball (I was just delicate) so I was able to avoid injuries because of it (meaning I couldn't participate and I was glad because those kinds of sports hurt me). I've never needed surgery for joint problems. And that's very good because we know now that those types of surgeries in a person with undiagnosed EDS are likely going to do far more harm than good. Otherwise this is very very much what life is like for me these days. I have some scary problems that will have to be addressed in the near-ish future and I have my younger sister to worry about and my dad too because I'm positive they both have it.
People with EDS sometimes mention the number of subluxations and dislocations they suffer a day. I'm only just learning how to tell--when it's been happening your whole life it's hard to notice--the pain in my case is delayed. My ligaments are so loose that there isn't any instant pain even with full dislocations. I have muscle pain later on (and always/chronically) from the constant injuries. But I think my left shoulder dislocates/subluxes somewhere between 12 to 22 times a day and while I sleep. That's just one joint in a whole body that's that unstable. And there's so much more that goes wrong than just loose joints.
This is how I am. And life goes on anyway. Most of the time. This week I've spent 3 days bedridden and today I was only able to do a couple of small things, put clean sheets on the bed for example. Hopefully tomorrow I will be even better. This week life didn't really "go on". This week all I could do was wait patiently for my chance to live again, while I focus on keeping calm, trying to let the people around me who have to pick up my slack know that I appreciate them and being taken care of, and occupying myself so I don't implode with boredom.
Watch the video if you want to know what it means to have Ehlers Danlos Syndrome, if you want to see what kind of things are in store for me in the future medically.
http://www.youtube.com/watch?NR=1&feature=endscreen&v=9aVDHi0Rsec
This video (minus the kids) is a pretty decent explanation of what it's like being someone with EDS.
I was lucky in some ways when I was younger as respiratory and immunological and GI issues kept me from being an athletic kid (I still did enough to do some permanent damage to my body, figure skating and horseback ridding mainly). I wasn't able to run and jump like the other kids and everyone noticed pretty early on that my fingers dislocated if I were told to catch a ball (I was just delicate) so I was able to avoid injuries because of it (meaning I couldn't participate and I was glad because those kinds of sports hurt me). I've never needed surgery for joint problems. And that's very good because we know now that those types of surgeries in a person with undiagnosed EDS are likely going to do far more harm than good. Otherwise this is very very much what life is like for me these days. I have some scary problems that will have to be addressed in the near-ish future and I have my younger sister to worry about and my dad too because I'm positive they both have it.
People with EDS sometimes mention the number of subluxations and dislocations they suffer a day. I'm only just learning how to tell--when it's been happening your whole life it's hard to notice--the pain in my case is delayed. My ligaments are so loose that there isn't any instant pain even with full dislocations. I have muscle pain later on (and always/chronically) from the constant injuries. But I think my left shoulder dislocates/subluxes somewhere between 12 to 22 times a day and while I sleep. That's just one joint in a whole body that's that unstable. And there's so much more that goes wrong than just loose joints.
This is how I am. And life goes on anyway. Most of the time. This week I've spent 3 days bedridden and today I was only able to do a couple of small things, put clean sheets on the bed for example. Hopefully tomorrow I will be even better. This week life didn't really "go on". This week all I could do was wait patiently for my chance to live again, while I focus on keeping calm, trying to let the people around me who have to pick up my slack know that I appreciate them and being taken care of, and occupying myself so I don't implode with boredom.
Watch the video if you want to know what it means to have Ehlers Danlos Syndrome, if you want to see what kind of things are in store for me in the future medically.
http://www.youtube.com/watch?NR=1&feature=endscreen&v=9aVDHi0Rsec
VIEW 22 of 22 COMMENTS
temper:
I watched the video. All the things are good to know.
temper:
We are hoping that maybe if everything goes well we can travel in January or February. Just wanted to let you know. 