I guess this is long over due, I have not really opened up about how EDS has ruined my life, and I think it is time to try to find others like me. ......I do not have many friends or people to talk to, so when I found out I had Ehlers Danlos, it was hard to accept.
For the first few years I fought with myself asking was this all in my head. I mean if you look at me I look like a normal fit person, but in reality I am anything but that. EDS makes the most simple things in life very hard, I mean everything from walking, running to getting in and out of a bath, it all changes. I once tried to get out of the bath tub and just standing I dislocated my knee.
I am at stage three, and on pain meds........the pain is so bad that some days I can not move or get out of bed, and it drives me nuts. When you try to explain how bad the pain is to other people they look at me and say things like " It can't be that bad." or " You are not in a wheelchair or anything, so stop feeling sorry for yourself."
I just look at those people and with they could feel what it is like to live with this for one day. I have tried so many times to live normal again, and each time the EDS screws things up. But I am happy to say, I have found new things to focus on like writing,poems,music,anime, and cooking. It helps to keep my mind on moving so I do not get depressed.
Well, just had to vent a bit. I have to go to the Doctor and find otut about my next operation.
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3 comments:
Stage 3? I've never heard of EDS as being staged. Type 3? I also have EDS and it does change life and make it more difficult. But then we were born with it, right? I find that some days are worse than others, but staying in bed makes me worse. It sounds like your pain levels aren't in check. Avoid operations if at all possible. We just end up with more complications from surgery.
Anyway, I just wanted you to know that there are lots of EDSers out there and you are not alone!
I'm so sorry you feel that EDS has ruined your life. I recognize those really bad days; I have them myself. And yeah, I have my times when I rail against the disability.
But I do try to keep a positive spin on it, as much as I'm able to. EDS has certainly changed my life, and not always in ways I'd hoped or expected. I know it's made me more compassionate, more understanding of those who are mobility challenged. I've started advocating for disabled persons, writing to my congresspeople and sharing my story. Maybe my life with EDS won't improve a whole lot, but maybe something I say or do will help the next person.
I hope you can find some small kernel of blessing in the midst of all the crap. One thing I did was set up Google Alerts so that I see new blog posts and news stories related to EDS. This helps me learn more from the medical community, and it helps me find blogs like yours of fellow EDSers.
Please take good care of yourself. You deserve it!
Thanks you guys.
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